Thursday, June 21, 2007

Mommy, I need a wheelchair

Being honest here... I don't know what to do when Paige utters this statement.

Paige has very mild CP. You would not know it by watching her on the playground. She runs and swings and can maneuver the monkey bars like a pro. When she is with her peers, the CP is a little more noticeable. Nonetheless, most people still cannot tell.

Does that mean that she does not have pain?

Paige started telling docs that her legs were hurting as soon as she could form sentences. The first neurologist patted her on the head and told her that her legs really don't hurt. He said that she could climb up on the exam table so she must be fine. She was so sad. (yes, we fired that neuro) Other neuro's admitted that her legs were very tight but she must not be in any pain because she was so active.

Yet another case of "she looks good to me."

When we moved we started seeing a new neurologist (for her epilepsy). During the very first visit, and during the first 5 minutes of the appointment, she told him that her legs hurt. He listened. He told us it was because she has CP. That was the first time she was diagnosed. Age 6. This neuro put her on pain meds, which Paige took until they didn't seem to work anymore. We let her decide and she chose to try to handle the pain and stop the meds, mainly due to the side effects and the fact that they didn't work.

She has never been able to walk long distances. She only has short bursts of energy. She has been asking for a wheelchair for about a year. Her neuro has even offered to let her out of certain activities (mainly long distance running) in physical education class. I have never agreed to any of it.

I'm afraid she will give up.

Recently we were headed to the mall. We knew we were going to be there for a few hours. Paige was very upset and begged for a wheelchair. When we go grocery shopping she sits in the big part of the cart. But there are no carts at the mall. I told her that we would take breaks. She was so sad. "But Mommy, I NEED a wheelchair!" I think she is in a growth spurt because her legs are even tighter than they have been before. She has pain daily.

Hubby and I gave in.

Hubby pushed her while I pushed her brother in the stroller.

I held back tears.

Paige was the happiest I had seen her in the longest time. Every so often she would get down and run around. When her legs got tired, she got back in the wheelchair.

All was good. Then we ran into one of the secretaries from her school. The look on her face said it all. "What the heck is she doing in a wheelchair. She looks fine to me."

At the end of our trip, she thanked us for the wheelchair and asked us if she could get one of her own. She wants purple.

I'm not sure why I'm having a hard time with this. Maybe because I know what people will be thinking (about hubby and I-not what they will think of the wheelchair). Maybe because I am so afraid she will give up. Maybe because I am still hoping that all of the lasting effects of prematurity will just go away.

I don't even understand how she can have so much pain. I've watched her run around the playground... she looks good to me too.

91 comments:

daedalus2u said...

What kind of pain is it? Pain when she uses the muscle, or pain after she uses it. Or is it episodic pain associated with use, which can be relieved by resting?

Pain killers are not the way to treat this. If it is a problem with mitochondria and ATP levels (I am emailing you something on that), that maybe something that higher NO levels would fix.

It sounds a lot like chronic fatigue, which I see as a problem of not enough mitochondria (to have a reserve when increasing exertion), and chronic low ATP, so other energy storing phosphates (phosphocreatine) are not regenerated during rest.

ex=preemie said...

I also have mild CP. The kinds of pain I experience are muscle soreness when I overexert myself, during and afterward. I also experience shooting pain in my legs that can even wake me up at night, or keep me from falling asleep. I can walk medium distances, but I need to rest from time to time. I can walk long distances if I push my endurance, but I end up very sore and weak for days.

Meira (comments AT voirdire DOT org) said...

Just chiming in to say that I feel for you. Normally I find it pretty easy to come up with an opinion (assvice central=me!) regardless of whether or not I have any experience with the question, but this time I've got nothing. Sometimes imagining the future can help -- 10 years from now, if ?A? happens, will you wish you'd gotten it for her? What if ?B? happens? If you wait, would you guess that when she's grown she feel like you 'betrayed' her, or like you've lovingly nudged her to do her best?

Laura said...

i can share with you the perspective of a 30 y/o man who has mild cp. i have known him since he was a little boy of 6 years. he was a 30 weeker.
j was obviously impaired physically but mentally he was brilliant. he graduated from his university summa cum laude and today is working towards his masters of divinity no doubt with distinction.
stilol j often struggled to keep up with his peers. this i knew as one of his peer counselors in his high school days. he joked about it calling himself fall-guy because, well, he sometimes fell down. as a young adult and dynamic youth minister, he had a unique way of teaching teens calling attention to his disabilities using all the "incorrect" terms that make us all uncomfortable. the kids ate it up and flocked after this young man who seemed to fit in in spite of the fact he didn't fit in. he and i still work together from time to time.i kno stairs are pain for him and i have ridden with him in his car where he will pull out the handicapped placard apologizing for using it because of location that might impair his mobility in one way or another. still, when i ask him how is his life really, knowing the physical pain he deals with, he tells me aside from the fact he hasn't found the perfect woman, life is awesome. i know him well enough to know he is sincere.. still when j is in pain, i can't help but ache with him. i imagine you feel the same when you are with your beautiful girl.

daedalus2u said...

ex=preemie, is the pain local to the specific muscle that is overworked?

A characteristic common to chronic fatigue is that instantaneous muscle strength per se, isn't reduced that much. But fatigue can occur extremely rapidly, within a few seconds. To me, that looks like a mitochondria and ATP regulation problem, not something neurogenic.

Being sore and weak for days also looks more like muscle energy status stuff, and not something neurogenic.

twinsx2 said...

I just bought a $350 stroller for my son. Insurance won't pay for it because "it's not medically necessary." But he gets tired, and at 11, he's too big for piggy back rides. And since I have no insurance, I can't afford to get hurt.

Paige may qualify for a special needs stroller. It's a little more "acceptable" than a wheelchair. Most kids I know have a Convaid. And, it comes in purple, in fact, it's the default color.

annaliese said...

TPE--

Have you considered botox shots,Physical therapy , or a Selective Dorsal Rhizotomy to relieve some of her spasticity? I have heard the SDR works wonders for mild children. I've also heard good things about stem cell infuions, if you banked her cord blood. I'm guessing she has spastic diplegia??

That being said, I would have no idea what to do in the wheelchair situation.

-Anna

The Preemie Experiment said...

daedalus2u... Her pain usually comes on after awhile. Some days she wakes up with it. On the days when she really overexerts herself then the pain is constant and worse at night when she first goes to bed.

A few years ago I started to wonder if she had mito. I started going to groups that had mito speakers and joined some groups. I talked with one of her previous neuros and he agreed to send her to a geneticist. The geneticist looked her over quickly, asked her some questions and then turned to me and said, "She is too intelligent to have mito. If you want to go ahead with testing, it's up to you. But do you really want to let someone take a chunk of muscle out of her leg?" He was one of the rudest docs I ever met.

We never went on with testing. But, I did push for a lactic acid and pyruvic acid blood draw. We followed protocol (that I had looked up and had to tell the phlebotomist). The levels were off the charts, indicative of mito. Her new neuro said that he did not feel it was mito because she finally recovered (after 2 1/2 years of severe chronic fatigue). He felt the elevated lactic acid and pyruvic acid were due to her epilepsy meds (Depakote).

She also had an EMG/NCV test. The neuro could not handle her screaming (I told him that he would need to give her more Valium) so he only did one portion of one of her legs. That portion was fine so he said that she was completely fine. Ugh.

Laura, you are right. I do ache with my daughter. I watch her around her peers and she does everything she can to keep up. She hardly looks different until she gets tired. Still, the kids notice and often call her weird.

At the end of this school year she decided that she wanted to be in the talent show. She asked some of the girls in her class if they wanted to make up a dance routine and be in the show together. They all were so excited. The day before try outs she came out of school crying. The girls told her that she danced weird and kicked her out of the group. I watched her do the dance that they made up and, yes, she could not do it. I encouraged her to try out anyway, but play the piano instead. She did try out but didn't get chosen. The other girls didn't get chosen either so that made it a little easier.

I just hate watching her be hurt.

twinsx2... Her neuro said that he felt that she is not at that point. He still is not completely convinced that her legs are as bad as Paige says they are. I don't think he would help us get a chair right now, which confuses me. He agrees that she does not need to run in gym but doesn't agree that they are that bad.

Why is it that docs have such a hard time calling it what it is??

Annaliese... Her CP is not severe enough for those treatments. Her former physiatrist (who is very famous in the world of botox) even said that her CP will give her trouble with docs because she is not severe enough for most treatments. The pain meds did help but needed to taken 3x a day, which meant that she was being given a dose at school. That's a story for another day. Very stressful for her.

Today we went to Walmart. We were going to purchase a pool toy that she has been wanting for a very long time. She was so excited. About 5 minutes into our trip she climbed into the cart and sat there, very depressed. She told me that she is so tired of the pain.

I guess I'm not complaining about the severity of her CP. I know how much worse it can be. But, I just don't know what to do about it all.

daedalus2u said...

What is EMG/NCV?

The Preemie Experiment said...

http://www.hmc.psu.edu/healthinfo/e/emg.htm

Judy said...

Are you familiar with a blog called A Day in the Life of an Ambulance Driver? http://ambulancedriverfiles.blogspot.com/

His daughter has CP - perhaps not quite as mild as your daughters. You might want to email him and ask if he has any resources he could recommend. Email addy on his profile page.

I sympathize with your frustration. Last summer I saw an orthopedic surgeon about my osteoarthritis and was basically told to suck it up. When I cried, he suggested that physical therapy might help, so I insisted on trying -- it did, and exercise continues to help, but the pain never really goes away. It's mine, and I can deal with it, but it would kill me to watch my kid in chronic pain.

daedalus2u said...

So when Paige was in pain from the EMG/NCV test was that toward the end of the test? That is, did the pain get progressively worse?

terri w/2 said...

Is it typical for kids with mild CP to have pain?? My first twin is very, very severe, and now has contractures, I'm sure she is hurting - she has a baclofen pump to help relieve some of the spasticity. Her twin sister, however has mild-moderate CP, and although she's complained of fatigue and stiffness, she's never complained of hurting on a daily basis (besides surgery recovery, PT, etc) until recently when she had over-exerted and had some transient hip and knee pain. Otherwise, no pain. So I'm wondering if this isn't something besides the CP causing pain for Paige too. . My daughter has been told that as she ages, she may need to use a w/c for mobility even though she ambulates independently now w/o braces, walker, canes, etc. .she is terrified of the possibility of a w/c in her future, but her PT said that as kids with CP age, their fatigue often increases, and they choose to use a w/c to conserve energy. .

On the other hand - whether to let Paige use a w/c or not. .my vote would be to let her decide. If it conserves her energy when you're out on longer shopping trips, and she is happy, go for it. If she really didn't need it or doesn't need it in the future, the stigma of it will probably make her stop using it if in fact it's not necessary.

And Anna - my daughter is researching using stem cell transplants to help "cure" her CP -do you have knowledge of where in the U.S. this is being done? She's looking at Mexico and China -like NO! Perhaps if she could even get an evaluation in the states or Canada, it might give her the info she's seeking and pacify her some.

annaliese said...

Terri- I'm sorry, but all the stories I have followed online feature children who had to fly to China to get the transplants and live there for awhile.

I don't understand why more research on this is not taking place here, since there is no ethical controversy over cord blood cells. As I understand, this treatment, is still in its "infancy" and has not cured anyone-just improved their symptoms. Supposedly the stem cells can "find" the dead, PVL cells and cause them to replenish. The day we can reverse brain damage will be a great one indeed...

Good luck to your daughter.

-Anna

terri w/2 said...

Thanks Anna - this is what we are finding too.

Yes, and why is it that the Republican party that passed the Baby Doe Laws in 1984-86, insisting that every baby be "saved" - refuses to sign into law $ for stem cell research that could enable higher quality of life for kids with brain damage, etc.. hypocricy at it's finest!

annaliese said...

Terri--

I've NEVER heard of using embryos for CP- that's what the R party opposes b/c of the life issue. As far as I know, they support research for cord blood/amniotic fluid/adult stem cells. My R senator (Norm Coleman) passed the HOPE Act to fund these kinds of research.

I honestly don't know that much about stem cells- th but I believe, in order to treat CP, a child needs their own cells that "match"-- cord blood.

At any rate, I thought you might be interested in these

http://nanaslug.livejournal.com, blog of a mom w/ a CP/PVL baby who recieved treatment in the US! (why did I think they were in China?)

http://www.news-tribune.net/local/local_story_163105132.html

article about why US doctors aren't fanatic about the treatment here

-Anna

terri w/2 said...

From my understanding, Bush just vetoed funding for stem cell research (again) yesterday. I can understand why they might veto stem cell research on embryonic if they support the pro-life stand-point, but all funding? What a shame. So much suffering might be cured. .

I'm curious about why the child would need their own cord blood for stem cell transplant - will check into this further. Thanks a bunch for the info Anna!

Terri

Jennifer said...

I just came across your blog. I have been in that same situation. However my little man is only 20 months old and doesn't use his legs. When we got his wheelchair I thought he would get so comfortable with it he would never want to get out. It actually is the opposite. He loves being up high like his sister and loves being able to just be on the floor. It has been the best thing to ever happen to us! I do have to admit that when we finally got his bright orange chair and put him in it I cried. He "looked" disabled. Before not many people noticed that there was a problem. Good luck with this. I know it helped our Zach. He is happier with it.

Jenn K.

Mommy to Hurricane Emily the 2 year old smarty pants. Zach "Bubba" the one who finds himself SOOO funny born at 27 weeks, CP,CVI, IVH, PVL, Infantile Spasms, and a contageous smile!
http://neffster.wordpress.com/

Premature said...

I don't have any advice for you but did want to say that you are all in my thoughts and have my good wishes.

Its never easy to see prematurity effects last so long...

Anonymous said...

Although she may have pain, its quite possible that reduced coping skills are creating the psychological need to be ill. She has been surrounded by her prematurity i.e. presentations at age 6, and if she is learning that prematurity=struggle or pain, she is incorporating it into her self-identity. Accentuate her strength, ability, coping skills. When she is tired, let her sit on a bench or some other appropriate venue. To give her a wheelchair is a mistake and is enabling in that it creates a twisted form of empowerment.

Long Term Listener said...

Oh dear anonymous of 11.46pm; please tell us all that you are not working in any health field and especially not with children.

Her experience is just that -her experience. If she says it hurts, then we take that as the starting point and we see what we can do to help her. Won't we don't do is dismiss her and tell her that WOW , she is SO good at xxx, that her legs will hurt less.
Goodness me - let's hope when you are in pain, someone listens to you rather than seeking to empower you and over riding yor pain by highlighting just how great you are in other areas- Perhaps how fab your hair looks cos that will really help diminish chronic pain.

Children who live with chronic pain know how they feel.They are far more able to assess that pain and its impact than some adult who thinks they know best with some misguided notions of their own.

daedalus2u said...

I completely disagree with anonymous of 11.46pm. The vignettes PE has discribed don't sound like someone trying to use reports of pain as a mechanism for manipulation.

Pain is a very real signal that the muscle is being overworked. Muscle is an organ that can be worked to death. Muscle has the capacity to consume ATP faster than it is generated, and will do so whenever you order it to. Normally that produces fatigue and eventually pain, and so is self-limiting. When the pain is masked, or ignored, muscle can be permanently damaged and even killed by over work. The ability to run muscle until it kills itself from overwork is an important survival feature when "running from a bear". Under those circumstances, minor damage, even major damages is better than being caught. Invoking such extreme metabolic states is not healthy.

That is essentially what happens in a heart attack. The heart muscle continues to work even though it doesn't have enough ATP until that part of the heart can't work any more and it dies.

terri w/2 said...

Anonymous - perhaps you should read PE's original post again - Paige told a neurologist as soon as she could form sentences that her legs hurt - she didn't know crap then about manipulation involving prematurity=struggle and pain. .

If a child's vision was good but then throughout the course of a stressful time suddenly went away and we held glasses that could help her eyes become rested and restored, would we keep them from her? Of course not - that would be abusive. What you are saying anonymous is negating and abusive.

Future of Hope said...

Stacy,

I'm not sure if this is the kind of feedback that you are looking for, but have you considered one of the small power scooters, such as the mini-moxie? Unless your insurance is MUCH better than anything I have dealt with, you are correct in assuming there is no way they are going to cover a chair for Paige, given her level of mobility. If you are having to look out of pocket anyway, why not expand your options to something that can conserve her strength and still give her independence? They also do not look as clinical as a chair, and are designed for people who CAN ambulate, but still need help with distances.

daedalus2u said...

An unpowered scooter might be better, and worth a try. It takes less energy to get around, it still takes balance, so that won't atrophy, and lots of kids have them so there isn't a stigma. But be sure to get a helmet, and perhaps other protective equipment.

Roller blades might be something to think about too. There is a big learning curve (I still can't do them).

Future of Hope said...

to daedalus2u -

The problem with a kick scooter would be that It would not be allowed to be used indoors or in public places, such as a mall, or at an amusement park. It is not an assistive device, therefore it does not qualify under ADA for access. The powered scooters that I mentioned are of the 3 wheeled, adaptive equipment variety.

Helen Harrison said...

Hi everyone,

First an update: Edward has not yet gone to surgery! The neurosurgeons could not get a free OR yesterday because of a sudden influx of heart and liver transplant cases.

Ed is doing well, all things considered, and is being given lots of pain meds. Mostly he has been sleeping.

He is supposedly third on the OR list for today...but given yesterday's "holding pattern," who knows?

I have the computer plugged into the phone line in his room and it is helping me to stay occupied during the interminable waiting.

I am following the current discussion here with great interest, and really appreciate input from adults with CP and from Daedalus on the topic!

Edward has CP, but rarely admits to pain -- from anything, including extreme intracranial pressure. That doesn't mean he doesn't have it!

For example, he denies having a headache when his ventricles are intensely and unusually enlarged and he is falling down from dizziness, crying out and moaning.

He attends a day school during the week where he walks 4 miles a day (in two 2-mile walks each day), and though I've worried about what this might be doing to him orthopedically (he limps badly when he walks), I never gave any thought to his energy levels and possible mitochondrial issues.

Ed is overweight (5 foot 6 inches, 168 lbs) and the walks are what keeps his weight under even this degree of control. We don't give him a high calorie diet and he is not able to snack on his own, so it is clearly a matter of the typical "preemie metabolic syndrome" kicking in. He is 31 years old.

Nevertheless, he seems sturdy and strong, and doesn't complain during walks, but doesn't much like them either, and will, if given the choice, do something involving less exertion.

What I *have* noticed is that his legs seem to itch a lot. He is always scratching at his lower legs, sometimes until he bleeds. The itching becomes especially intense if he is in warm water -- a hot tub or a bath tub. At first I thought we had fleas in the house, but no...

I'm wondering if the itching is a sort of milder pain response from the conditions being discussing here. I'm particularly interested in any feedback from adults with mild to moderate CP, as Edward has. He can't tell us (usually) what he is feeling, but maybe the itching is something you have also experienced?

daedalus2u said...

What about with a prescription from her doctor for it? I think one could make a good case under the ADA that it is an assistive device. Getting various places to be accomodating might require a letter from her doctor and some back and forth.

daedalus2u said...

Itching is a common symptom of some disorders which I associate with low NO. I think it is a mechanism to stimulate lymph flow in the skin, and so accelerate transport of NO/NOx from the skin and "my" bacteria to the systemic circulation.

Laura said...

to helen harrison:
i vaguely recall in the book: pain; the fifth vital sign, that itching being described as a response to pain.
i know i had episodes of intense itching once while in pain.
nice update of edward...although i cringed a bit at his height and weight stats....i am only about 5 lbs less and 1 inch taller yet my doc swears i am just right in spite of my desire to try to lose 5 lbs that won't budge.
good luck with the surgery, i do hope you get a or time soon. hang in there with those transpalnts...near and dear to my heart since my baby brother needed one three years ago.

annaliese said...

As long as we're on the subject of CP, I always wondered about this but have exhausted google and CANNOT find an answer!

Helen, (and other experts), is it true that the severity of PVL doesn't correlate to the severity of the outcome? Someone (who is not a medical professional) once informed me that children w/ mild PVL could have a more severe outcome than a child who has has significant PVL. Her little one has very mild PVL but a severe disabilty, while another woman's son (whose story I have only ever followed on the internet) has "significant PVL" but supposedly no CP or cognitive impairment. Is it dependent on the PVL's location??--becaue I would think the greater the damage, the owre this disability. Also, PVL affects motor/mental function--it wouldn't cause autism or behavior issues, would it??? And Finally, someone else (who is not a medical expert) told me that the brain can compensate and form new pathways around PVL??

Is this stuff true? Sorry for the constant questions...

-Anna

Regina74 said...

Accepting that our sons would be wheelchair users was a difficult pill to swallow at first. After all that work of learning to walk in the first place (one at age 3 the other at age 4) was for naught. I must say, the "work" of walking was just too exhausting. Particularly when they were in Jr. high and high school (they are 20 y.o now). They haven't given up walking when they can.

Helen Harrison said...

Ed had surgery last night and the entire shunt was replaced -- or at least what could be easily extracted (it was entirely calcified and clogged after 15 years of service).

Ed has a fashionably shaved head now and is on some fashionable painkillers as well (for which we are *very* grateful).

We, and the general surgery team set to deal with Ed's peritoneal adhesions, were particularly delighted to learn that a small portion of his lower peritoneum is adhesion-free, so installing that part of the shunt went more easily than anticipated.

I am at Ed's bedside and he is resting quietly listening to his XM radio hits-of-the-60s station

To Anna who asked about PVL:

MRI studies are now showing that PVL is much more common in preemies than previously thought and that most preemies have it to some degree. Previously, with ultrasound, only (relatively large)cystic PVL could be easily seen. Now diffuse, pin-point lesions are being widely detected. So it is hard to compare what one mother may have been told to what another mother was told because the understanding of PVL is changing.

Sometimes, for children who have not had sophisticated MRI scanning, the main sign that they have had a major hit of diffuse PVL is ventricular enlargement. This is caused by the shrinkage of the brain surrounding the ventricles which, in turn, allows ventricular fluid expansion into the void left by dead brain tissue.

Other brain structures may also be deformed by the PVL and other prematurity-related injury such as the corpus callosum, the hypothalamus, the hippocampus, the cerebellum, etc.

Unless a child has been part of one of an MRI study, it may not always be known that PVL has taken place or the true extent of damage from diffuse PVL or other causes.

And MRI can't give the whole story.

Baboon studies are now yielding clues about what happens to the brain as a result of prematurity and NICU treatments on a cellular level. Fetal baboons from normal pregnancies (to eliminate prenatal damage issues) are being delivered prematurely and given various NICU treatments. Then their brains are examined on autopsy.

These and other types of studies are showing that prematurity *per se* causes damage, but that a major source of additional damage and disability is the ventilator.

PVL (and other brain injuries that often accompany it) could be a cause of, or marker for, the damage involved in autism, MR, CP, cortical blindness and more.

I would guess that the cerebellum and/or pathways connecting the cerebellum and other parts of the brain will turn out to be a part of the autism story in preemies.

Helen Harrison said...

I shouldn't have dared to be even *tentatively* optimistic about Ed's condition. He is now running a temp, is nauseated (after having a good appetite this morning), breathing rapidly, and has an O2 of 89.

He is on an oxygen cannula which he really hates. We are hoping this is only a 24-hours-post-op temperature spike and not an infection. He's gettin major IV antibiotics of course, but with all the weird antibiotic resistant microbes out there...

Lisa said...

Anna,
I very specifically asked my son's neuro during our last visit if the extent of PVL damage (as determined by MRI) can be correlated to outcome. She said that the amount of PVL is a very good indicator of future ability. She said that it isn't 100% and there will always be outliers, of course. (I was very interested in this because I had read the same accounts as you apparently have.)

This is just one Neurologist's opinion, however.

daedalus2u said...

A question, is PVL periventricular leukoaraiosis?

annaliese said...

Thanks for answering my questions! Who knew i could learn so much from the internet?

Helen, please send Edward my get-well wishes.

-Anna

annaliese said...

Periventricular Leukomalacia.

buddhist mama said...

Dear Helen.
I wish you and Ed well, I hope he gets off that nasal canula soon---which my daughter also despised along with the feeding tube, and whose (admittedly minor) effects caused long term food aversion and other sensory issues.

I have been off the internet for some time and missed two superb posts by PE (response to a reader and pregnancy after a preemie). I have a pressing response to the person who noted:

"the people reading this blog are people who have ALREADY made their decisions. It appears you are really trying to reach parents who have not yet had a premature birth, in an attempt to enlighten them were they to encounter such. No?"

Excuse me, for pointing out the obvious, but those who read this blog may or may not have had a preemie themselves, they may or may not work in the NICU or wider medical and social worlds that treat preemies, they may or may not be academics who teach others (ie. like myself, i teach college students who may one day be medical students) about preterm birth, and they may or may not themselves be pregnant again one day or KNOW SOMEONE who is at risk of recurrent preterm birth. We may have sisters, friends, daughters one day who end up having one preemie and are wondering about the very issues that this blog discusses on a daily basis.

Thank you, Thank you to PE, to Helen, and to others who continue to post valuable information about your own experience or the medical literature you come across that relates to issue of premature birth.

Re, the medical literature, I just finished interviewing Alan Peaceman, head of Maternal/Fetal Medicine at the Feinberg School of Medicine and a co-author on about 4 articles about Alpha 17, the progesterone drug that PE mentioned. His major 2003 NEJM study did show a marked improvement of the drug over the control group. Yet a major flaw of the study (and the subsequent articles which used the same data as the original NEJM study) was that the control group was elevated by almost 35% above a similar cohort/demographic of women who chose not to be in the study. So the drug only showed a marked improvement against a substantially elevated control. The net effect was zero, as the rate of preterm birth in those who didn't participate in the study and those who got the shots was about the same.

The NEJM study I am referring to is: Meis PJ, et. al. Prevention of Recurrent Preterm Delivery by 17 Alpha- Hydroxyprogesterone Caproate. New England Journal of Medicine June 2003; 348(24): 2379-85.

buddhist mama said...

My last post did not respond PE's concern about a wheelchair for Paige. Given that my twins are only 3, I feel out of my depth. I would say go with her wishes, as my hunch is to go with my own children's wishes, when it concerns their body or pain. I strongly feel their wishes and pain may have been denied during the NICU. How could they have made their wishes or pain known at that early stage, and even if they had---by grimacing---I'm not sure anyone alters treatment in the NICU based on a grimace.

Anonymous said...

This is only for PE. I posted earlier about not using a wheelchair. Please keep in mind that there is a major mental illness present, and that there is more going on here (in a general sense) than muscular issues. You have some dedicated, yet terribly myopic readers.

Anonymous said...

HI PE,

I don't want to minimize what you or Paige are going through, so please forgive me if this sounds in any way condescending. And I am a different anom to the previous one.

Your daughter has mild CP and is complaining of pain that is consistent with CP. I know that there is a lot going on in her brain, but it's a bit of a co-incidence that she is complaining of something that is consistent with a diagnosis that she in fact has.

Personally, I would get her the wheelchair. But I would get one that self-propels - maybe you can borrow one until you work out whether it is a permanent thing or not. I think that you will find it has the opposite affect to her giving up.

Also, only a suggestion but we give magnesium phospate and calcium supplements to our sons (one has CP, the other ones doesn't but gets growing pains) and they act as mild muscle relaxants. It doesn't always stop the pain but helps most of the time.

terri w/2 said...

Anonymous 1:38 - but Paige DOES have as you say "muscular issues" -although CP is really a neuro issue impacting her muscles, but I digress..

It sounds like you are wanting to deny a child what she feels she needs to deal with her CP - BECAUSE she has mental health issues? Scarey. As one commenter above stated, I hope you don't work in the health field with children.

I like the advice of the other anonymous - borrow a self-propelled w/c (there are tons of loan closets out there with outcast peds w/c these days - since so many of our preemies need them). .if she really does need it, she'll use it - if she doesn't she'll abandon the idea pretty quickly, and you won't be out any $$. . Better than just flatly negating the issue - you're letting her decide.

The Preemie Experiment said...

I have had a very emotionally draining week (nothing to do with Paige) here on the homefront and have not had the time to comment on all of the wonderful suggestions from everyone. Please know that I am grateful for all of you.

As far as Paige's pain being "real" or part of her mental health issues...

I can see where the comment may be valid if it was relating to something other than pain with walking/running. For example.. if I asked her to clean her room and she started saying that her legs hurt, well I might agree that she was just trying to manipulate the situation.

But, considering that children do everything in their power to NOT be different than their peers, the fact that she wants a wheelchair in a public place, where others are staring at her, makes me believe the pain is real.

She really has been talking about this pain since she was very little. Even before she could speak, she would point to her legs. When she was little and would sit with her legs stretched out in front of her, her toes touch the ground. The docs want to say that this is impossible because she passes 2 tests, consistently. One is that she can walk on her toes and the other is the fact that she can walk on her heels. Her legs hurt immediately with both of those excersizes though.

Her current neuro is giving mixed messages. He is willing to let her out of any running activities in class but gives her a condescending look when she talks about a wheel chair. Other docs have done the same. I really think it's becuase she is so active. And, as other docs have mentioned, she is very intelligent which (under old criteria) knocks her out of the category for mito issues.

Another part of the problem is that I am tired of fighting to have the docs believe her. I have spent the last 8 1/2 years trying to make docs give up the "cuteness factor" and understand that she is suffering. I go back and forth between fighting and sticking my head in the sand, neither of which get me anywhere.

Hubby and I have talked about the real fact that she may not get any help for her pain until she is older and on her own.

Since Paige's symptoms, as with other preemies, do not fit into a nice clear category, docs don't believe they exist.

I am so tired of docs looking at hubby and I as suffering from "fragile child syndrome" instead of believing that we know our child.

tervy said...

have you considered EDS? the joint hypermobility form; re comment toes touch the ground; see: http://www.ehlers-danlos.org/eds.htm

quote: Pain is a common feature with hypermobile joints, even when skeletal X-Rays are normal /quote

As a kid I had brittle bone and hypermobile joints; they do hurt.

daedalus2u said...

Hypermobile joints and porous bones are (to me) a symptom of low basal NO. The main signal for bone to rebuild itself and strengthen a particular spot is NO released when the bone strains (strain as in a deformation due to a stress, a change in length due to stress). That NO activates cells to deposit more mineral in that spot making it stiffer. When the basal NO level is lower, the bone has to strain more to achieve the action level of NO, so the bone has to be more deformable.

The same mechanism applies to connective tissue holding the joints together.

Helen Harrison said...

Ed is in the ICU and this is the first time I've been able to go online in quite a while

Ed took a nosedive after surgery, with nausea and a swollen abdomen. He began desatting on 100% O2 last night, and projectile vomiting; and it was off to the ICU.

He either has post-surgical ileus (which may resolve with time) or another more serious SBO that will probably require the same surgical marathon we endured in 2004.

He now has an NG tube to try to decompress his GI tract so that he has room to breathe. There is talk of beginning TPN since he hasn't kept anything down for almost a week. But TPN risks a shunt infection which Ed doesn't *seem* to have at the moment.

I will have to sign off soon since I'm (very illegally, I'm sure) using an ICU phone line.

In the all-too-few few quiet moments, I've been reading through articles on nitric oxide that Dave (Daedalus) has been kind enough to send me. It is fascinating!

I look forward to well-funded research projects and -- if Dave's NO producing bacteria turn out to be as curative as they seem -- help for many of the ills that beset us and our preemies.

Chris and Vic said...

Re: pain in general.

Medical people are trained that the definition of pain is subjective, that pain is whatever the patient says it is. And that we, who are in charge of attending to the pain, and perscribing and/or administering pain meds or treatments, are to believe our patients when they say they have pain. The only question we ask is for the patient to rate the pain on a pain scale (1-10) for adults or a smiley face picture pain scale for young kids.

I believe we do Paige a disservice when we discount her pain.

Where I work, we may also modify our response to alleviating pain when addicts (supposedly with low pain threshholds for pain) say they are in pain. We may hold back on addressing their pain, calling it drug-seeking behavior. We do them a disservice, too, I believe.
In fact, I think we are playing God when we dole out the pain meds and treatments as if we know better than the patient . . .

Chris and Vic

The Preemie Experiment said...

Chris, you are so absolutely right! I never could understand a doctors thinking when they discount Paige's pain just because she is still smiling and moving around. To me, it just speaks to her pain threshold and ability to persevere. I honestly think they would believe her faster if she went in to their office in tears!

On a side note... Paige hurt her foot a few weeks ago. She tripped (as she often does) and instantly started screaming (which she never does-in response to pain). After a few minutes a bump appeared on the outside of her foot, about half way between her pinky toe and her heel. Instead of rushing her off to the local germ factory (ER) I choose to play the "wait and see" game. Honestly, I forgot all about her foot because she never mentioned it again.

Tonight she fell again and proceeded to show me the bump. It is now bigger than before. She swears it doesn't hurt and even let me push on it. It's solid, no fluid.

Time to make a decision. She doesn't feel pain like the rest of the population (let us not forget the pencil in the eye incident). Should I have it xrayed or leave it alone? I asked her what she thought (not really giving her control but well... giving her a say in what happens next). She told me that it needed to be xrayed because her body is telling her that it is fractured (her words-not mine). hehe

Off to the doc we go tomorrow.

The Preemie Experiment said...

Helen... you are in my thoughts, as always. Thanks for the update.

Sending healing thoughts your way.

Anonymous said...

Written by Buddhist Mama:

"Excuse me, for pointing out the obvious, but those who read this blog may or may not have had a preemie themselves, they may or may not work in the NICU or wider medical and social worlds that treat preemies, they may or may not be academics who teach others (ie. like myself, i teach college students who may one day be medical students) about preterm birth, and they may or may not themselves be pregnant again one day or KNOW SOMEONE who is at risk of recurrent preterm birth. We may have sisters, friends, daughters one day who end up having one preemie and are wondering about the very issues that this blog discusses on a daily basis. "

I will grant you that some of the people you list might be reading this blog...doctors, teachers, etc. However, you and I both know that the great majority of readers are mothers of preemies. I think we both also know that there is more that can be done to reach those who need this information most.

If your target audience is doctors (OBs and neonatologists), educators, and those potentially facing a preemie birth, how could you better reach those people? Sure, it's easy to post a blog entry each week and act like you're a pioneer...but where's the real work? Where's the literature documenting the things talked about on this website? How could that literature be disseminated to reach your target audience? How could you build relationships with doctors, birthing centers, etc to get your information out there to the people who need it most? Could you set up lectures at med schools to talk about prematurity? And on it goes...

Long Term Listener said...

Anonymous of 9.27

I think your point is a fair one- but seriously, when do we have the time to do as you suggest?
Honestly- we are already a vulnerable group. Our time is limited. We veer between hospitals, clinics, education, psycologists.
We try and maintain our lives by the odd trip out - if we can get someone to baby sit.
We come on line to feel a bit more supported perhaps.
We would go to conferences - but as you know- how much are they to attend? We don't get to go for free.

If you can practically give us a way in- we would take it. If you can say - right, come to my grand rounds and talk about your experiences -we would. Please don't ask us to do it for free. Pay our travel, our accomdation and a fee - the same fee that you get paid - and I, for one, will be there. If you can give me that commmitment - count me in for sure.

terri w/2 said...

No kidding, Long Time Listener in response to anonymous. .

My girls are now in their early 20's - both launched, sort of. .one to permanent care outside of my home, the other still lives with me but fairly independent. However, when my girls were younger and BOTH living with me, a trip to the grocery store and post office was a treat! You just don't get the local teenie bopper babysitter in to watch a child with status epilepticus, etc, etc. Outings are massive undertakings either with or without the kiddos. Yes, I had attended a number of conferences nationally, but again, planning and cost were extreme. Our message is important and one that docs, etc should hear, but social isolation is a HUGE issue for families in this situation. .as well as financial issues.

As far as the "where is the literature" comment - there is frequent reference to medical literature here - have you been reading this blog for any length of time? Besides since we are the ones in the long-term trenches, our personal experiences tell the truth of what life is REALLY like for many preemies, especially those who are extremely premature. Where do you get this kind of vast personal knowledge and experience in medical literature? Where is the "real work?" The real work is our lives, every minute of every day consumed with the care of our children, keeping our children healthy, happy, and in some cases ALIVE.

Is our truth too difficult for you to hear? Perhaps our children's lives are making you uncomfortable ethically. .as it should.

23wktwins'mommy said...

I just wanted to say that I hope Ed is doing better, and I feel so sad about all he and his family are going through. It must be so hard to go through the same sorts of things you experienced in the NICU 30 plus years later.
I'm sorry. Healing thoughts your way.

The Preemie Experiment said...

Anonymous (june 25th at 9:27) wrote:

"If your target audience is doctors (OBs and neonatologists), educators, and those potentially facing a preemie birth, how could you better reach those people?"

To be honest, I never put much thought into my exact "target" audience. I have witnessed parents be run over when reality hits that their preemie did not "catch up by age 2". They need to know that not all kiddos actually do catch up. And, in fact, those who do catch up are still at risk for other issues. Better to know the possibilities than to get slapped with reality when you were told a non truth.

Anonymous wrote: "Sure, it's easy to post a blog entry each week and act like you're a pioneer..."

I have never called myself a pioneer!

Anonymous wrote: "but where's the real work? Where's the literature documenting the things talked about on this website?"

Helen and others have listed studies in many places throughout this blog. As soon as I have some time, I will be adding tags to the past posts so it will be easier to find the research.

Anonymous wrote: "How could that literature be disseminated to reach your target audience? How could you build relationships with doctors, birthing centers, etc to get your information out there to the people who need it most? Could you set up lectures at med schools to talk about prematurity? And on it goes..."

As others have written, I do not have the resources, that doctors have, to attend conferences and fund research. They leave their spouses to take care of the children while they are off at those conferences. I do not have that option. My days are filled with running between doctors and therapies.

If I was invited to speak and someone paid my way, I'd be there. Many of us would.

I speak about my experience any chance I get. One outlet is this blog.

As far as building relationships with docs... I get private emails from docs who did not realize the other side of prematurity was this widespread. Once they joined on line groups and could see for themselves, they were floored. Hopefully they will do some good with the information.

I will continue the blog as long as I can. The comments have been wonderful. I am proud of the discussions going back and forth, even the ones from people who do not agree with me.

We are all learning.

Anonymous said...

Ugh! I hate Blogger-- it ALWAYS rejects my pass word and never lets me log in!:(

Anon- just google "Helen Harrison" and you'll find LOTS of stuff. Plus, if you look back @ PE's old posts, she quotes studies and stuff; they always have the facts to back it up.

-Anna

Chris and Vic said...

Why is it that there has to be 2 sides--the experiential side (parents doing the relentless, everyday work of raising ex-preemies) and the scientific studies side (researchers, docs and academics)? And perhaps more importantly, why is it so difficult for one side to "reach" the other side?

You may take me for an anti-intellectual, but I strongly believe that the people in the trenches, the parents raising the kids, ought to be heeded and believed. Whereas the burden of proof, that is, the necessity of proving themselves/their research, ought to be on the 2nd group, the academics, the docs, the researchers.

Those of us raising preemies are individualizing the care for each and every ex-preemie---a goal that clinical medicine only HOPES to achieve.

We are making judgment calls on a case-by-case basis and avoiding wild generalizations that are spawned by studies and by recipe-medicine.

We are integrating body, mind, spirit, education, healthcare, family-life, in our homes on a minute-by-minute, day-by-day basis. (As opposed to narrowing the focus of the study appropriately so that we can be sure of its validity.)

We are doing a fair amount of trial-and-error, which makes us more sure of the conclusions we arrive at in caring for our kids. (It also demonstrates our flexibility and willingness to try new approaches if one or the other approaches don't work.)

For my own child, who has hydrocephalus, one of the many sequellae of prematurity, it is day-by-day, a venture with a kid who is not neuro-typical in many ways. The neurosurgeon has been MOST unhelpful. He hasn't a clue about what it is to live with hydrocephalus on a day-to-day basis. He only knows surgery, not the ebb and flow of CSF build-up and drainage. (He denies that there can be shunt malfuctions--saying that either the shunt is working or it isn't. There can only be out-and-out failures, he says. He is soooo wrong---my child would have had hundreds of surgeries for what I see as malfunctions, that are time-limited, if it was up to the views of the neurosurgeon. Instead, he has "only" had 8 shunt revisions.)

Hey, listen to me/us! Give me/us credit for being tuned in to our kids and their issues. We, in turn, "listen" (read "observe the cues") of our kids, the patients. We spend the time. We are the intensivists. We have insights and at times, answers for our own individual kids' issues.

As far as building relationships with the docs, it is not easy in many cases. They look at us as folksy and anti-intellectual and superstitious, many-a-time. It is difficult to find a person who has the smarts, the ability to listen and learn from the people in the trenches, and the flexibility to do the trial-and-error and to partner with the family of a chronic, un-neuro-typical ex-preemie.

Any doc who wants to know the real deal must spend a day-in-the-life. Period. Full stop. (As opposed to reading the literature.)

Why is it up to me/us to reach out to the docs, who are so entrenched in their own pathways to knowledge (medical school preparation and clinical practice in practice-settings)? They aren't ready to listen for the most part. They don't care about the consequences, long-term, of what they begin in the NICU. They are heroes-of-the moment, saviors in the NICU. "Just get 'em out the door alive," seems to be their mantra---who cares what the future may bring? That is up to the peds and the families. That is clean-up. Boring?

This blogspot and the on-line preemie lists have the knack for being supportive. Research and docs don't. I, for one, am all about giving and receiving support.

Chris and Vic

Anonymous said...

Chris wrote:
Hey, listen to me/us! Give me/us credit for being tuned in to our kids and their issues. We, in turn, "listen" (read "observe the cues") of our kids, the patients. We spend the time. We are the intensivists. We have insights and at times, answers for our own individual kids' issues.

I believe this is a huge part of the entrenched partisan-ship that defines the post-NICU landscape. The MD's chiefly responsible for the these children (from a rescue/science perspective - not wishing to ignite the who made who do what debate) - have no hands on experience of what sequelae mean - but they often are quick to interpret *OUR* observations as amateur, unscientific, emotional or g*d forbid "parental"... Our experience isn't a double-blind controlled study - it's a toddler who can't quite sit up on their own, a preschooler whose sensory integration issues make walking into the beautifully decorated and noisy preschool classroom not only not fun - but some sadistic torture chamber. Unfortunately -- in some cases like Stacy's situation with Paige - there is even more prejudice - our culture wants to hide the mentally ill away - we are uncomfortable being around them and are consumed by irrational fears. Stacy will have even MORE trouble than many preemie parents getting medical issues addressed because Paige has a significant mental illness history and so will first be viewed with that lense.

Chris continued:
They don't care about the consequences, long-term, of what they begin in the NICU. They are heroes-of-the moment, saviors in the NICU. "Just get 'em out the door alive," seems to be their mantra---who cares what the future may bring? That is up to the peds and the families. That is clean-up. Boring?

Our lives ARE boring to the cowboys of the NICU (this does not describe all Neo's - some are poignantly and beautifully caring and ethical) but to the "let's see if we can keep a 21 week fetus alive " or "maybe we should try for an artificial womb/placenta" our brain damaged, impacted surviors are nothing more than inconvenient truths - mistakes they want to chaulk up to a bygone error of clinical mistakes - even though what they continue to do is simply more and worse of the same. Ironic that it's our KIDS mental illness that they want to hold up as explanation ... when perhaps the ULTIMATE definition of mental illness is someone who keeps repeating the same behavior and expects different results.

Chris as always - you are so spot on perfect in your posts - when I grow up I wanna be Chris.

Sheila

Chris and Vic said...

Sheila, your point about repeating more of the same (errors) in neonatology---not only is that a definition of mental illness; but it is NOT scientific. Nor is it ethical. It is stubbornness. It is cowboyism. Maybe it is even grounds for litigation.
Chris and Vic

Helen Harrison said...

To Chris, Sheila et al,

It is also "kicking the can further down the road," getting a problem "off my desk and on to yours," its "fragmentation of care," "compartmentalism," and an "authoritarian hierarchy" also, a big dose of "groupthink," often fatally flawed by misinformation from reports lower in the chain of command. No one seems to understand, or is inclined to think of, the big picture. Or if they have thought of it, they don't share it with us.

We are at UCSF which is probably as good as it gets for medical care, and yet the lapses of common sense here are immense. If DH and I weren't here every minute of the day/night...I hate to think.

We have to initiate each new caregiver (and it seems there is a new one for some fragmented task or other every five minutes) into "Edcare" and "Edspeak" and, "No, he can't rate his pain on a scale of 1 to 10, he is autistic and only marginally verbal and the pain scale makes no sense to him. Ask him instead if he wants pain medication. That's a question he can answer. But for heaven's sake just LOOK AT HIM! He's miserable!"
"No he doesn't understand about pushing the call button,etc., etc,"

Why can't this, and other, even more critical info be passed along accurately from shift to shift?

Everyone is walking around in his/her groove marking tasks off, timeserving. I don't blame the medical profession, since this situation is probably endemic to any large bureaucratized system, but why can't we have continuity of care and developmental care for adults? And why can't we give it to more preemies to help prevent them from becoming impaired adults.

I see so many places where the tiny details of personalized care could help avert bigger problems.

A few on the staff do rise above just doing what they have to do to get through the day, but most don't, and it seems that every hour brings a new tragi-comdey of errors.

And despite the "groupthink" every doc seems to have a different version of what we're facing here.

We are now back on the neuro ward after 2 1/2 days in the ICU where an NG tube was inserted ( using ketamine and lidocaine) and a PICC line was installed (atavan and lidocaine). The PICC line went into the wrong vessel (up the neck instead of into the chest.) Attempts to reroute it have been futile, so far, and another attempt to install a PICC line is to be made this afternoon.

Meanwhile Ed has been essentially unnourished for a week.

I am in correspondence with
Daedalus who is explaining to me the chemistry of Ed's condition, which grows more dire the longer he is without nourishment.

I'd like to invite all the neonatologists in the SF Bay Area (and beyond) in to visit Ed, to see where their "good intentions" all too often lead.

Anonymous said...

When I mentioned literature, I did not mean the scientific studies that are sometimes cited here. I meant literature which encompasses not only science but the experiences which are spoken about on websites such as this one. I meant literature that talks about the real-life, day to day, reality of preemies. The docs already have access to scientific literature. What they need is what only parents and survivors can offer.

As to cost issues, most conferences offer a few scholarships that can help offset the expense of attending. And, who says you can't raise funds to support what needs to be done? What I hear are a lot of excuses... Where is that person (besides Helen) who is going to step up the plate? Who is going to become more than she thought she could be, accomplish more than she ever thought could be accomplished? And, if you find resistence from docs to your message...keep plugging away. What else is there to do?

terri w/2 said...

Wow. . anonymous. ."exuses?" This is so outrageous, I can't even comment - it's not worth it.

On another preemie front - I heard today from a MN health professional that a 4th sextuplet has now died.

Long Term Listener said...

Oh dear - what a surprise. Anonymous of 3.56 pm runs away.

Look at the transference here-they had the chance, if they are in the medical field - to stand up and be counted. But no- they try to pass the buck.
We offered-anonymous ran.Sad really, I can't help but wonder what they do stand for?

Why should we fund raise our way to conferences? I don't see any doctors doing that and please don't tell me that their knowledge is more valuable than ours.
Shame eh? If you are involved in the medical field - go to your board - get us the funding and we will come.

Anonymous - you don't know our lives - or our capabilities - and we know we are all so much more capable then you know because we don't run away when confronted with our realities.


and hmm.. on the word "surviviors" - I'll ponder that word - such a loaded and emotive word.

BTW - if you chose not to find us the funding - we won't be surprised, you will just be another person who lacks courage. Our children however, wow, are they courageous and brave.

Helen Harrison said...

A note from the trenches:

Ed finally has a working PICC line and is on TPN. His ileus/SBO *may* be resolving, but I'm frightened even to hope.

Having ranted about bureaucracies and fragmentation of care yesterday, I want to add that, on the positive side, UCSF has *great* PICC nurses (although apparently the admin wants to get rid of them in favor of having the already overburdened ICU RNs to all PICC lines),
and we have a great team of nurses working with Ed on the ward this AM.

Best case scenario, according to the docs we saw this morning, is that Ed may go home sometime next week barring further complications.

helen harrison said...

Ed is napping, so I would like to respond to Anonymous 3:59.

I "stepped up to the plate" because I was fortunate enough to have the resources to do so. I was also in a position where no one could fire me -- though I have been subjected to harassment personally by physicians and others for speaking out.

Speaking honestly about our experiences with neonatology is not something any parent does lightly.

I know of families who have lost their jobs, lost the support they needed to care properly for their child, had crosses burned on their lawns, been followed and stalked to their place of work, been threatened with loss of custody of their child (or actually lost custody), or been taken to court on trumped up charges, all because they dared to voice a less than politically correct opinion of neonatal care and its aftermath or dissented to proposed (disastrous) neonatal treatment.

I have seen, over and over again, the neonatal establishment try to blacken the names of any parent who dares speak up.

Jill Lawson, who went public on the "unanesthetized infant surgery" was declared "mentally unstable" "suffering from a grieving disorder" and referred for psychiatric care for saying that preemies could feel pain even though they were not being anesthetized for surgery!

Read the _Long Dying of Baby Andrew_ by Robert and Peggy Stinson to see how these fine parents were maligned and slurred by the medical staff when they dissented to their son's futile medical torture.

I can cite many examples.

Our fears are real, and no one "complains" about the status quo easily or without negative fallout to themselves and their family.

Anonymous said...

Helen wrote:
Our fears are real, and no one "complains" about the status quo easily or without negative fallout to themselves and their family.

Absolutely brilliant Helen ... the struggle against injustice is a path of broken glass to an unknowable end .. but you walk with the angels on the path - and carry the thanks of many grateful hearts.

Thoughts from people much more eloquent than I -

Modern Man is the victim of the very instruments he values most. Every gain in power, every mastery of natural forces, every scientific addition to knowledge, has proved potentially dangerous, because it has not been accompanied by equal gains in self-understanding and self-discipline.
Lewis Mumford (1895 - 1990)

Injustice anywhere is a threat to justice everywhere.

Martin Luther King Jr. (1929 - 1968), Letter from Birmingham Jail, April 16, 1963

helen harrison said...

I, and a fair number of others, have been walking the path of "broken glass" for decades now. I think it has done some good, but I have wonder about the burdens-to-benefits ratio.

In 1983, a number of parents and professionals from around the country (and world) met to establish "Parent Care," an organization for parents of premature and high-risk infants.

We had a good run... (T. Berry Brazelton and Peter Gorski were keynote speakers at our first conference)and we had substantial medical/corporate funding... for a while.

But then, when we wouldn't *all* tow the neonatal party line *all the time,* the funding was pulled and the organization had to fold.

One of the main points of discord was the performance at one of our conferences of the Tony Award-winning play, "When the Bough Breaks." I had absolutely nothing to do with this, by the way, though in retrospect I totally support the performance.

The play offered an even-handed view of neonatal care with all the ambivalences, ambiguities, and arguments fairly presented. This more-candid-than-usual look at the NICU and its consequences made the docs and corporate people very angry, and they pulled their support.

There were other reasons why Parent Care folded, but I think the play may have been a turning point.

I know of other parents (some from NAROF; some here participating in this discussion) who have given Grand Rounds presentations and who speak at conferences and publish about their experiences and views in medical journals. We write "letters to editors." We object to the media when they present one-sided "miracle baby" stories, and to the docs when they publish obviously (to us) flawed research. We attend, and try to speak up, at major neonatal conferences. We are generally told to sit down and shut up.

We are dismissed as "angry," "embittered," "nuts,
"discriminating against the handicapped" or similar nonsense.

Anyone who has has been reading the neo blogs since the beginning of this year knows just the sort of thing I'm talking about.

Some of us have been trying (against formidable opposition) to get the message out, but it costly and dangerous. There are so many more parents out there who are with us but lack the resources to join to the fight, however much they'd like to.

When I'm feeling optimistic, I'd like to think that the Internet has helped evened out the odds and given us more of a voice. I'm particularly heartened by the bravery, candor, and readership of TPE!

I suspect that we will eventually be taken seriously when we, in the US, try to institute some sort of single payer health care, and the true costs of NICU are scrutinized.(The Wall Street Journal ran a good article on the special education issue several days ago -- I'll try to get the refs.)

AOL is trying to kick me offline again for exceeding my allotted dial-up hours (I'm on a phone line at UCSF med center, where our 31 year old preemie son has recently come out of surgery and intensive care for prematurity-related problems) so I will close for now.

Ayesha said...

I am a 30-year-old woman with CP and just wanted to comment on the wheelchair and pain issue. First of all, with regards to the wheelchair, I think many parents (including mine) make the mistake of waiting too long to get one, forcing their children to suffer pain and fatigue and miss out on life. People without disabilities often see a wheelchair as sad, or a sign of failure, but for the person using it, it is liberating. It gives us the opportunity to participate more fully in life and keep up with the pace of able-bodied people.

Paige sounds like a child who would benefit from a scooter or power chair, to use for long outings such as trips to the mall, zoo, etc. Many of these locations provide free scooters, so you might not actually need to buy her one - though if you did it could be customized to her circumstances. Your description of her reaction to getting to use a chair really makes it clear from where I sit that this is something she truly needs, not wants, and that it will only improve her quality of life.

With regards to pain...it could be from spasticity, but I would look into other possible causes. I personally did not have pain like she describes at her age, but we with CP are all so different. You might also look into the drug Provigil as a treatment for spasticity - there have been some very encouraging studies done on it.

Hope this is helpful to you and your daughter.

terri w/2 said...

Yes, Helen, I would have to agree that many of us have spoken up in regards to these issues many many times. .personally, our family's story was covered in the largest newspaper in our state when our girls were 4 - I've written numerous letters to the editor and all have been published to date. Last semester, we had to do an "ethics issue" in our nursing management class, and my fellow nursing students were sickened by what they learned about prematurity - the long term issues, the costs, but especially the aggressive NICU care and suffering of neonates. One student, 20 weeks pregnant and working in a peds unit at a hospital with a NICU was quite angry with us and said that parents want us to do these things - my response back to her, we have to look at why that is . .it's because parents ONLY hear the miracle baby stories, they see the Children's Miracle Network Telethon highlighting only those "normal" children of extreme prematurity = NO one ever hears the other side of this. Hospital PR depts pump out extremely one-sided prematurity information. She had to back down and agreed.

In addition to speaking up and risking my family's privacy, we participated in an neonatal ethics video a couple of years back. I allowed cameras into my house and allowed them to film one of my daughters. In addition, they interviewed my best friend whose preemie died of a succession of shunt infections and failures at age 12. I was so proud of her.

So yes, we are talking - but neonatologists are NOT listening. We're being brushed off as atypical outcomes - really? One look at what is happening to the sextuplets in MN right now only 2 of the 6, 22.6 weekers are still alive. A far cry from what some neonatologists are saying that most of 23 weekers survive and live normal lives. We are the norm if there IS a preemie norm - the death and disabilities and horrific life-time struggles.

After 20 years of saving preemies as early as 23 weeks, and outcomes not really improving, if at all, the question should be WHY aren't they listening?

Long Term Listener said...

Hi Terri w/2

I also wonder why they are not listening.
My hope is that anyone reading this blog who works in neonatology will go to their conference committes and their research boards and get some cash together to invite us to conferences to discuss perhaps our experiences. Or they could do a joint research project with us to capture all that is for example being disucssed on the web ( not just here).
If I am truthful- it is not a high hope. A higher value is placed on academic knowledge and I would be astonished if anyone opened the doors to let us in and produce new knowledge in this area which can then be submitted to journals.

Don't hold our breaths.

Anonymous said...

FYI (this was in the Boston Globe) -

Backlash on bipolar diagnoses in children
MGH psychiatrist's work stirs debate
By Scott Allen, Globe Staff | June 17, 2007

No one has done more to convince Americans that even small children can suffer the dangerous mood swings of bipolar disorder than Dr. Joseph Biederman of Massachusetts General Hospital.

From his perch as one of the world's most influential child psychiatrists, Biederman has spread far and wide his conviction that the emotional roller coaster of bipolar disorder can start "from the moment the child opened his eyes" at birth. Psychiatrists used to regard bipolar disorder as a disease that begins in young adulthood, but now some diagnose it in children scarcely out of diapers, treating them with powerful antipsychotic medications based on Biederman's work.

"We need to treat these children. They are in a desperate state," Biederman said in an interview, producing a video clip of a tearful mother describing the way her preschool daughter assaulted her before the child began treatment for bipolar disorder. The chief of pediatric psychopharmacology at Mass. General, he compares his work to scientific break throughs of the past such as the first vaccinations against disease.

But the death in December of a 4-year-old Hull girl from an overdose of drugs prescribed to treat bipolar disorder and attention deficit hyperactivity disorder has triggered a growing backlash against Biederman and his followers. Rebecca Riley's parents have been charged with deliberately giving the child overdoses of Clonidine, a medication sometimes used to calm aggressive children. Still, many wondered why a girl so young was being treated in the first place with Clonidine and two other psychiatric drugs, including one not approved for children's use. Riley's psychiatrist has said she was influenced by the work of Biederman and his protege, Dr. Janet Wozniak.

"They are by far the leading lights in terms of providing leadership in the treatment of children who have disorders such as bipolar," said J. W. Carney Jr., lawyer for Dr. Kayoko Kifuji, a Tufts-New England Medical Center psychiatrist who temporarily gave up her medical license after Riley died on Dec. 13, 2006. "Dr. Kifuji subscribes to the views of the Mass. General team."

Part of the criticism of Biederman speaks to a deeper issue in psychiatry: the extensive financial ties between the drug industry and researchers. Biederman has received research funding from 15 drug companies and serves as a paid speaker or adviser to seven of them, including Eli Lilly & Co. and Janssen Pharmaceuticals, which make the multi billion-dollar antipsychotic drugs Zyprexa and Risperdal, respectively. Though not much money was earmarked for bipolar research, critics say the resources help him advance his aggressive drug treatment philosophy.

Numerous psychiatrists say Riley's overdose suggests that bipolar disorder is becoming a psychiatric fad, leaving thousands of children on risky medications based on symptoms such as chronic irritability and aggressiveness that could have other causes. Riley's father, for example, had only recently returned to the home after being accused of child abuse, according to police. Since the girl's death, state officials have stepped up a review of the 8,343 children taking the latest antipsychotic medications under the Medicaid program for conditions including bipolar disorder, to be sure the treatment is appropriate.

Psychiatrists too often prescribe these medications, which carry side effects such as weight gain and heart disease risk, without addressing problems in the children's lives, said Dr. Gordon Harper, director of child and adolescent services at the state Department of Mental Health. He likened the approach to "tuning the piano while the subway is going by."


Aggressive treatment
Biederman's critics chide him for not speaking out against misuses of a diagnosis that he has helped inspire. Among leading authorities on bipolar disorder, the Mass. General team has proposed the most aggressive treatment for the broadest group of children, they say, and Biederman should take responsibility when treatment goes wrong. At a conference on bipolar disorder at Pittsburgh's Point Park University last weekend, one speaker, Dr. Lawrence Diller, a California behavioral pediatrician, contended that Biederman bears some blame for Riley's death.

"I find Biederman and his group to be morally responsible in part," said Diller, whose popular book, "Running on Ritalin," accused psychiatrists of over treating another childhood condition, attention deficit hyperactivity disorder. "He didn't write the prescription, but he provided all the, quote, scientific justification to address a public health issue by drugging little kids."

Biederman rejects the idea that Riley's death is a cautionary tale, accusing critics of exploiting a tragedy to fan fears about psychiatry, a profession that has long faced prejudice. "The fact that she had XY drug or XY treatment is irrelevant to what happened. . . . If this child had the same outcome from treatment for asthma or seizures, we wouldn't have this frenzy," said Biederman in an interview at Mass. General's Cambridge mental health clinic.

Though Biederman acknowledges that distinguishing bipolar disorder from ordinary crankiness and flights of fancy in young children is challenging, he insists there is no ambiguity in the patients at his practice. "People have to wait a long time to see me or my colleagues. . . . It's not that somebody comes to me after their child has a temper tantrum. They do things for years that are dangerous. These are things that profoundly affect the child," said Biederman, putting them at risk of academic failure or even suicide.

Biederman dismisses most critics, saying that they cannot match his scientific credentials as co author of 30 scientific papers a year and director of a major research program at the psychiatry department that is top-ranked in the "US News & World Report" ratings.

The critics "are not on the same level. We are not debating as to whether [a critic] likes brownies and I like hot dogs. In medicine and science, not all opinions are created equal," said Biederman, a native of Czechoslovakia who came to Mass. General in 1979 after medical training in Argentina and Israel. He now lives in Brookline.


Struggle for research funds
Biederman's thinking on bipolar disorder grew out of his work in the early 1990s, when he observed that many children referred to Mass. General's psychiatric clinic seemed to have periods where they were extremely aggressive, deeply depressed, or angry. And they were not getting better from taking medications such as Ritalin, which is prescribed for attention deficit hyperactivity disorder.

At the time, psychiatrists considered bipolar disorder a condition that typically revealed itself around age 20, and rarely in children under 12, but Biederman believed that many of his patients met the definition normally applied to adults. Working with Wozniak, he published an influential paper in 1995 reporting that one out of six children at his clinic might be bipolar and that the rate was even higher among children with ADHD.

Biederman was already quite successful as an ADHD researcher, establishing close ties with companies that manufactured drugs such as Ritalin to fund research projects that the federal government would not pay for. He also received payments for giving speeches about mental health issues and serving on scientific advisory boards that typically meet a few times annually to discuss research. He declined to say how much he receives, but said that all of the income was approved by both Harvard Medical School and the hospital.

Biederman's boss said he does not believe the money affects Biederman's judgment.

"I think a pharma person would not dare to tell Joe what to say," wrote Dr. Jerrold Rosenbaum , chief of psychiatry at Mass. General, in an e-mail. "And if they made that mistake, it would be only once. . . . For Joe, it is his ideas and mission that drive him, not the fees."

Biederman said he quickly discovered that drug companies were less interested in bipolar disorder than the more established ADHD. He and Wozniak, who did not respond to a request for an interview, struggled to get funding for research on bipolar children. "The more controversial a diagnosis is, the harder it is to get funding from conventional sources," he explained.


Contrasting viewpoints
Occasionally, they received small grants from drug companies or private philanthropies to test drugs on children, but Biederman admits these studies are not enough to prove the drugs are safe and effective. Nonetheless, the Mass. General studies were enormously influential: their 2001 study, in which 23 children diagnosed as bipolar received the drug Zyprexa for eight weeks, became one of the most frequently quoted articles in the history of the Journal of Child and Adolescent Psychopharmacology. The study showed that the drug eased outbreaks of aggression, though children typically gained more than 10 pounds.

Biederman was disappointed that he could not do more comprehensive studies, but he saw no reason to delay treatment. "At least the line of drugs I'm talking about gives some relief," he said. "The only way to understand the side effects is in the context of the seriousness of the illness."

As bipolar disorder received increasing media attention, Biederman and Wozniak's research was often cited as the scientific rationale for diagnosing and treating the disease aggressively. Another leading researcher, Dr. Barbara Geller of Washington University in St. Louis, adopted a more restrictive view, requiring that children have a series of specific symptoms such as reduced need for sleep before she would diagnose the disorder. But the Mass. General team used broader categories, saying that children who are extremely irritable or aggressive might be bipolar. Skeptics said those symptoms were too common, leaving too much room for dispute over who is really sick.

Dr. Biederman's staff "can do the same diagnostic interview on 100 children and come up with five or 20 bipolar disorders, and I might do the same thing and find only one or none," said Dr. Jon McClellan , a psychiatrist at the University of Washington who chaired a panel of the American Academy of Child and Adolescent Psychiatry that recently concluded there is no proof that children under 6 can be diagnosed with the disorder. He says he has received no money from the pharmaceutical industry for years.


A surge in diagnoses
Biederman's work helped fuel a surge in the number of children diagnosed with bipolar disorder over the past 15 years. A national study of community hospitals found that the percentage of mentally ill children diagnosed as bipolar quadrupled from 1990 to 2000.

The rapid rise raised concerns at the National Institute of Mental Health, prompting its top officials to convene leading specialists, including Biederman, to urge them to come up with diagnosis and treatment standards. The resulting guidelines, released in 2001, acknowledged that Biederman was right: Bipolar disorder can strike before puberty. However, the guidelines also stated that identifying the disease among children is challenging because normal children are prone to be irritable, aggressive, or giddy.

Dr. Steven Hyman, who was then director of the mental health institute and is now provost at Harvard University, said he remains very concerned about the growing use of "big gun" antipsychotic drugs such as Zyprexa, Risperdal, and Seroquel on children. In the Massachusetts Medicaid program, the number of people under 18 receiving at least one of the "atypical antipsychotic" drugs rose from 6,943 in 2002 to 9,123 in 2005, a 31 percent jump, before declining to 8,343 in 2006. Hyman says that none of the drugs has the approval of the Food and Drug Administration for use in bipolar children, and doctors prescribe them based on their individual judgment.

"We don't know the first thing about safety and efficacy of these drugs even by themselves in these young ages, let alone when they are mixed together," said Hyman.


Rebecca Riley's treatment
Kifuji was careful in treating Rebecca Riley, meeting the child six times before diagnosing bipolar disorder, according to Carney. Based on the child's behavior and family history, Kifuji prescribed three drugs to the 3-year-old child, including the antipsychotic medication Seroquel and Clonidine, a high blood pressure medicine that is often prescribed to calm aggressive children. Last year, Clonidine was prescribed to 1,195 children under age 7 served by the Massachusetts Medicaid program, including Riley.

Police charge that her parents, Carolyn and Michael Riley , repeatedly convinced Kifuji to give them extra Clonidine, ultimately accumulating dozens of extra pills that they used to control the little girl. Long before the child finally died on the floor beside her parents' bed, the police report said, teachers and school nurses noticed that she had become lethargic like a "floppy doll" on a nurse's lap.

Carney said his client, who is not practicing while the investigation continues, did nothing wrong in writing the prescriptions for the girl. Although some were shocked that the child was taking so much medication, Carney said Kifuji was practicing mainstream psychiatry for a very troubled child. He observed that Biederman's "research and teaching validates Dr. Kifuji's work with patients."

Scott Allen can be reached at allen@globe.com.

© Copyright 2007 Globe Newspaper Company.

© 2007 The New York Times Company

Vika said...

Sounds like you have a pretty life-loving, observant kid. Trust her, she won't give up.

And many, many sympathetic noises from a stranger to you. Of course you're having a hard time with it. You're a loving parent.

Annie C said...

Found your post through pediatric grand rounds, and had to suggest something. I'm had a stroke as a child, and still have to deal with some left side weakness. Usually it's doesn't hamper my mobility, I can get around my usual errands without stopping, or with only a brief stop to stretch. Except at the mall, or places like Walmart

Going to those places always magnified my pain to the point where I wanted a wheelchair. I hated them, and yet my Mother was, and is quite the shopper so many of my week-ends as a child were spent in just such a place. You would not believe the misery, or the level of painkillers I used to have to take just to get through a shopping trip, but I was never allowed to use adaptive deviced becase Mother wanted me to be strong and learn to cope. And yet put me in the woods and I could hike for miles.

My husband was the one who finally figured it out. Most of those places have tile floors, easy to clean but also quite slippery. Odds are you don't notice the lateral stress it's putting on your joints and muscles not to slip on those floors, but I surely do. It's the combined stresses that caused all the pain.

Now when I have to go to the mall I usually take at least one cane, somedays two, depending on how I feel. The added balance points helps to take some of the stress off those muscles. Along with physical therapy and regular, targeted excercise. I also do much of my "mall shopping" online.

I don't know if it helps or not, but if she's complaining more about pain in certain situations that others, you might want to think about what makes those situations different, the external situation rather than the internal. Hope that helps.

Anonymous said...

I'm not trying to be cruel to you, but it really sounds like you're more concerned with what other people think than with Paige's comfort.

Please, before her chronic pain leads to more health problems, get the poor kid a wheelchair (contact your local Lion's Club; they provide wheelchairs and other medical equipment to people who need it). This doesn't mean she will "give up"; it means she will be able to experience life more happily.

If you're worried about her not engaging in enough activity, then plan periods of activity that are suited to her comfort and ability. She has already demonstrated that she'll walk when she's comfortable doing so, even if the chair is available. She also demonstrated that being able to rest when she's hurting and tired makes her so much happier during family outings.

As a person who has chronic pain, I am capable of walking. I am not, however, capable of doing so for long periods of time without my pain and fatigue getting steadily worse. When my spouse and I go to a mall, zoo, museum, or other place that will involve a lot of walking, we bring along the wheelchair so that I can enjoy myself. If I do not have this option, I either have to cut the trip short, or I become progressively more unable to focus on anything besides the pain I am feeling.

When I started using a wheelchair, I was amazed at how DIFFERENT my experience was. I noticed details, read more signs, absorbed more information, and was able to delight in these things instead of dragging myself past them with the red-haze of pain blinding me to pretty much everything around me.

I am an adult, and therefore I can decide for myself to use a wheelchair. I can effectively communicate what I am feeling to my doctors and my family. I cannot imagine being a helpless little girl whose begging for relief is not taken seriously enough to actually do something about it.

You say that you ache with her--if you truly do, then why are you continuing to allow her to hurt, when she doesn't need to?

Again, I am not trying to be mean to you, but I cried when I read this, because I know what Paige is going through, and it kills me to see it being blown off because of unsubstantiated fears that she will "give up", or because you are afraid of what other people will think. What they think is their problem. The fact is, chronic pain changes a person's life, and total normalcy is not always possible. It's a noble goal, but it can be a cruel one when the sufferer is not allowed to make that decision for herself.

Finally, your worries about her "giving up"--if her pain continues to be unrelieved, she WILL give up. Pain wears a person down, piece by piece. It can lead to severe depression and other health problems. And what are you going to do when she decides that she doesn't want to suffer anymore, and refuses to walk at all? You can prevent that by permitting her the relief of a wheelchair for certain circumstances.

LISTEN to her. She's been trying to tell you for how long now? When she stops trying to tell you, it's time to worry, because THAT is when she has given up.

Anonymous said...

"contact your local Lion's Club; they provide wheelchairs and other medical equipment to people who need it"



They will do what?!? Not in most parts of the universe. Adaptive equipment is rarely lying around for the taking. A parent has 3 "choices". 1) Good insurance coverage - and even then you FIGHT for it 2) Buying new items out of pocket that are priced 5x's higher than they should be because the words "Special needs" are attached, or 3)Finding used items from other special needs parents.

Anonymous said...

Oh, but they will. It's called the "Medical Loan Closet" program. Contact the clubs in your region to see if they have anything available. My chair came from a club in the next county over, so if you don't have success with the nearby one, fan out your search. Do a google search for "Lions" and "medical loan closet" along with the name of your town to see if they have the program available.
Here are some pages from a couple of clubs that have this program:
http://www.churchvillelions.org/medicalloan.php
http://www.logisticsoflove.com/Lions/Projects/LoanCloset/index.htm

It doesn't hurt to ASK, and if you tell them the situation, they may be understanding. Denying its existence and refusing to even try is just silly, though.

catherine said...

if you get a permanent wheelchair, make sure it is the lightest and really manuverable. we didn't do our homework and ended up with a 45 pound chair when i now know i could have gotten something 1/2 the weight. check out colours wheelchairs, that is what we will get next (nice, sporty, light, rigid frame). your back muscles will appreciate it. good luck (and i don't know what to say about the mega-comment section? except wow).

terri w/2 said...

Is anyone else confused as to why Anonymous posted the lengthy article from the Boston Globe on bipolar in children? Seems a tad off topic, unless I'm missing some hidden point here. .

Lori said...

I assumed the article was posted for Stacy because of Paige's BP dx and that there was no other place to post it??

terri w/2 said...

Lori - perhaps you are correct - I just hope that "anonymous'" message is not trying to negate issues with Paige's mental health. Stacy's had enough of healthcare professionals, etc negating their concerns. . .

terri w/2 said...

Stacy - I wish we had kept my daughter's wheelchair from when she was 8ish - it was lightweight and PURPLE! There is a recycling program here in our state - we just take unused medical equipment and especially kids w/c's that they outgrow every couple of years and take them back to the w/c vendor. They give us a slip for a tax write-off. Our state has apparently had massive amounts of medical equip end up in landfills, and this was a way to curb that. I do not know where the chairs, beds, standers, etc. end up though after donation.

The Preemie Experiment said...

Thank you to everyone for their comments, all sides.

Yesterday Paige and I had a very long conversation about her needs in regards to a wheelchair. I tried to pin down the exact spot where she is feeling pain. As we talked it out, she was able to articulate that it is her feet and lower legs that hurt and the rest of her legs get sore. I asked her what places give her the most problems to which she responded, grocery shopping and the mall. We agreed to continue letting her sit in the cart at the grocery store and then we'll rent a wheel chair at the mall. She then says, "I only need the wheelchair at the mall when I'm bored. Like when we are there for my brother and not clothes shopping for me."

I think what she means is that she can ignore the fatigue when she has something else to focus on (like clothes shopping-she is a fashion diva). Again, I believe that her pain is real but it's easy to see how hubby and I can be so confused and how docs can misread her comments.

Anonymous said...

Maybe if you're going to the mall for shopping that isn't for her, you could let her stay with a relative or friend for the duration? I too get bored off my rear when I'm watching other people clothes shopping.

Carla said...

I've been out of town, but thought I'd add my 2 cents now that I'm back...
I'm pretty sure that CP affects EVERYONE differently; so if she is really in pain; then walking long distances is a big issue and a wheelchair is a tough decision to make. My son with mild/moderate CP has a wheelchair (it's a Convaid EZ Rider and looks more like a big stroller) for long distances. A lot of times it seems my son has better endurance than his twin sister. After a while walking around she then gets a break and sits in the stroller while he walks.

If you can get away with borrowing/renting wheelchairs for now then great. Otherwise, a wheelchair or electric scooter would make her more independent, but we opted for a lightweight stroller-type chair for a couple of reasons--Jacob cannot propel himself in a regular wheelchair because he is legally blind, DD, etc. It is also lightweight (weighs less than him!) and is easy to fold like an umbrella stroller (unlike his last stroller where each piece weighed 20+ lbs). Also, since it looks more like a stroller; it SEEMS less...permanent---aside from the tag on the back that says "wheelchair". The Convaids are expensive however, costing over $1,000 so if you can't get it covered through insurance you are out of luck. A cheaper option would be finding a used one (good luck) or the McLaren available at Adaptivemall.com for about $400.

Anyway, sorry I rambled but good luck and take care everyone.

Carla

The Preemie Experiment said...

Carla,

Thank you for your thoughts. We have decided to just rent her a wheel chair for now. She seems to have more discomfort during a growth spurt, which she is in the throws of right now. In a few months we'll reevalute the situation and go from there.

Thanks to everyone who commented both here and in a private email. Thanks especially to those who sent me positive emails. Those who know us, know that we have always had Paige's best interest in our hearts.

tbonegrl said...

Sorry I am so late, but my thoughts are with you guys.

Deborah said...

People do not understand why I have a motorized scooter and a wheelchair and a mobility dog for when I walk. Some days are harder then others though I would rather walk I thank God for the wheels and dog when I really need them. Hang in there and Purple? I want my wheel chair to be Pink. I will get Hubby right on that. :o) Deb

Lori said...

I found your post through a link elsewhere, and I just wanted to send a little sympathy your way. My husband (42 now) has comparatively mild spastic diplegia, and he apparently experiences varying degrees of pain - but I would never, ever know unless he said something to me. I see the tension in his legs when he walks (which is mostly around the house/office - not for significant distances such as at the store), but it simply never occurs to me that he's in real pain unless he mentions it to me.

He apparently also walked and even ran as a child, but the cumulative effects of age, weight, fairly unsuccessful surgeries, and even just wanting to do stuff and not pay the consequences of being immobilized for a few days because of it means that he now mostly uses a scooter (paid for with our own money, of course, since - at least for adults - "mild" CP = technically ambulatory = no insurance assistance).

One thing - when we met in Japan, he was getting around mainly on an adult tricycle, and getting an almost absurd amount of exercise doing so. He loved using it, and if he were allowed to take one on the train to work here in the US, he'd still be using one. They're much more complicated to use in the US, but would something like that be worth looking into for your daughter? My husband says that, in his case, a different set of muscles was being used to pedal than the ones that normally felt CP-associated pain, so it might be one way of helping her to remain active while allowing her a little more ease of mobility...

At any rate, hang in there. It sounds like you're doing all you can to ensure your daughter a healthy and happy life. :)

Anonymous said...

My daughter is 12yrs and attends a special school and is undiognosed but ever for since she was too big
for her push chair it was actually at braking point she has always had alot of pain.
Never wanted to go out and if we did go out always sat on the floor when the pain got too much so essentual outings to shops were limited.
The doctors have always fobbed us off and she has had pain killers and physiotherapy with no one willing to know why.
My poor kid has been stuck at home for years with no life and i just went and bought her a £200 wheelchair and so we took it out for the first time.
A whole new world has opened up, she just doesn't want to go home and want to go everywhere and she now has a life.
The best thing is her smile and at the end of the day no more pain.

mobility aids said...

Wheelchair is one of the mobility aids needed by those who experience difficulty in moving around freely and independently. It helps them improve their life at home and be more independent. It is a big help for them.

Anonymous said...

Im the mom of twin preemies 24.6 weeks gestational age they are now 10 weeks old. They are still in the nicu, but now they are stable. Baby A was diagnosed stage 3 PVL , after getting a head ultrasound at 2 months old . The strange thing is that prior ultra sounds were normal and this last one show many holes in the central area of the brain in both sides of the brain .
Neurologists say that they can't predict the future outcome at such a young age, and they say some kids with severe PVL have good outcomes and some with very low damage can have more problems. I don't know exactly what it can cause when the holes are pretty much in the middle.
My husband and I have been researching online about it and found out about studies that stem cell transplants can help regenerate damaged tissue. We don't know if it works in the brain tissues and if it has bad side effects. We know there is a doctor in Houston Texas, Neurologist pedriatician who is researching about transplanting stem cells to newborn babies who have brain damages. I would like to know if you think it can work and if it's worth putting the baby in this study. I think as early as possible is better so if brain tissue regenerates he can grow up with a better quality of life.
There is also an institute in Panama City that treats children with CP with stem cells and maybe can do something for my baby.
We don't have Cord Blood and don't know if it is possible any other way.

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