Friday, January 18, 2008

Get The Diagnosis

(This discussion was started in the comments under a previous post but it is very important so I am making a post out of it.)

Helen Harrison wrote: "About 20 years ago, a friend of mine was sent to psychotherapy because of her infant preemie son's eating disorders -- which the docs felt was due to her failure to bond with him. The child's feeding problems were finally solved after gall bladder disease was diagnosed and his gall bladder was removed."

Terri w/2 wrote: "Helen - my best friend was also sent for psychotherapy because of her daughter's feeding issues. The hospital videotaped her attempting to nipple feed her daughter and then told her to go home for a few days while they took over. They had no more success than mom did, however, they still blamed mom for the baby's feeding issues.

She was later dx with cerebral palsy, had a fundoplication done (twice) due to severe reflux and a g-tube placed at age 2.

I hope that medical care in this area involving preemies has since changed, as this caused this very devoted mom a mountain of anguish."

Joan wrote: "I've been thinking about this story since reading it last week. It's one more example of what preemie parents go through over and over and over - dealing with so many issues that don't have appropriate identification or treatment - in the context of the health care system - and enduring treatments or attitudes that inadvertently become abusive, although the abuse is stemming from blatant ignorance rather than intentional cruelty.

Lack of real help is SO prevalent for the many issues our preemies face."

Chris and Vic wrote: "There is this doc on public radio--Zorba Paster (The Longevity Code), who always says, "You've GOT to get a diagnosis". I don't agree with everything Zorba says, but I think he is dead-on with insisting that people who call in have got to go back to their docs and get a diagnosis.

In the case of our ex-preemies, if there is no diagnosis, what Joan says happens will happen again and again. Blaming parents. Yes, it is an abusive practice--and I would not let any doc off as easily as Joan lets them off. I think it is abusive, and ignorance does not absolve . . .

Instead, if a diagnosis is doubtful or long-in-coming, those docs should document, document, document what has been ruled out; what parents suspect; what docs suspect but cannot prove with conventional testing. Docs should go on to write, to document, that they do not blame parents, that they believe that the parents have some insight into the problem, etc.

The docs should write a tentative diagnosis. They should write into the record the lab error rate for the tests that have been done. They should write that they have referred the child on for a 2nd or 3rd opinion to such-and-such specialist. They should write in the record (a commitment) that they will follow up in 6 months or a year, repeating the tests, or giving the child a trial on a med, or giving the child more time to mature or show additional symptoms, or whatever.

Often enough, the parents are sent home with their child having symptoms, even worsening symptoms, and the parents have to figure out a way to deal with it on a day-to-day basis. And the docs get to blame them for their creative solutions, or for whining about the problems, or for their angry or depressed reactions to the lack of a solution.

Come on!!! Play fair!!! Follow up. Keep sleuthing till you find a diagnosis. Repeat the tests. Refer to a specialist. Do whatever needs to be done. Don't dump on parents and then blame them for the difficulties they have in coping."

******************

For me, this is a very sensitive subject and one that still makes me tear up. Many of what has been talked about, happened to us. I think I've blogged about this before but forgive me if I am repeating myself.

Many times, through many preemie issues, hubby and I were accused of everything from being nervous parents all the way up to M√ľnchhausen's. A few examples that really stick out in my mind.

# 1. When Paige was about 3 weeks away from turning 4 she passed out on a swing, twice. I talked to the doctor and described Paige's behavior before, during and after. He tried to convince me that Paige was just being silly. When I asked about seizures, he chuckled and said that she clearly did not act as if she had a seizure.

The next day we had a scheduled appointment (unrelated) with another doc in the practice. We brought up our concerns about the swing incident. She looked hubby and I in the face and told us that we are going to have to stop treating her like a preemie.

2 days later Paige's OT told me that she had concerns over Paige's behavior. When I told her about the swing incident, she told me that I was not over reacting.

I called the doctor and demanded that he order an EEG. He refused. I told him that I felt that he was being irresponsible. He was quite angry with me. The day after the EEG, he called me, apologizing up and down, while telling me that he EEG was the worst he had seen.

2 days later we went to another neurologist, who repeated the test. He told us that the original test must have been performed incorrectly. As the tech was hooking Paige up, the neuro even commented that she looked too good to have an EEG that severe. He felt that we were looking too closely at her because of her prematurity. After the test the neuro came in, shaking, telling us that he didn't understand how Paige was walking and talking. He showed us the tracings... continuous spikes. We left with a diagnosis of Epilepsy.

#2. When Paige was about 4 she had an odd fever. We aren't ones to freak out over fevers so we just kept an eye on her. About an hour later I checked it again and it was higher. I gave her Tylenol. She started complaining that he joints hurt. She laid down on the couch. Then I knew something was wrong. When Paige was that age... she NEVER sat still. After a few hours I called the doc, explaining that I gave her meds-alternating Tylenol and Advil but her fever was 105, and she had joint pain. He told me that kids get fevers and made me feel like a fool for calling.

2 hours later I called him back because she was very out of it, despite being hydrated. Doc told me, "listen, if you bring her to the hospital they will have to do a lumbar puncture and you don't want that."

About 3 hours later Paige was fine. Fever gone. But, she was not the same. From that day forward, she lost the ability to walk without being fatigued. Other odd symptoms came on but the docs would say, "well she is a 25 week preemie-what do you expect?" After a year filled with begging docs to help, they all gave up. More than one of them suggested we head to mayo clinic but would always follow that with a reminder that she is a preemie. Ugh. My point was that she changed after that fever.

A friend mentioned the possibility of Paige having a mitochondrial issue. I talked with docs and a few of them agreed that she fits the criteria. We finally got an appointment with a geneticist. I came very prepared, huge typed packet of info. He agreed that her issues were indicative of mito, he even pointed out a feature that we hadn't noticed. Paige was 5 by this time. He spent a short amount of time talking to her and then turned to me and said, "she is too intelligent to have mito." I tried arguing that not all mito issues present with cognitive delays but he stopped me and said, "do you know what test would have to be done?" Of course I did... a fresh muscle biopsy. By this point, after quite some time researching it all, I even knew where to go for it and how you should not waste time getting a frozen biopsy-which meant we had to head to Cleveland. He then said something that caused me to fall apart as an advocate... "Mom, why would you want to put her through that? It's very painful."

I gave up. I talked with 2 docs who were not in the mito "field" but were very interested in it and had spent some time researching. They both said that the best thing we could do was wait until she crashed again and then push for the test. They both also told us that she may not "crash" again until puberty.

Waiting sucks.

There are so many other instances that docs have dismissed our concerns over the past 9 years. I've learned to fight for help but it is very draining. I shouldn't have to fight.

On the flip side, in recent years, doctor's attitudes seem to be getting better. I didn't figure it would happen since we moved from one of the largest cities in the U.S. to a state that is lacking in pediatric care. But, it seems that Paige's docs, here in our current state, believe that there are long term effects of prematurity and do not turn up their nose when we walk in. It still isn't perfect, but it's better.

I wish I could say that our new positive experiences are the norm but I know better. I read, on the preemie groups, about the troubles others are having and how they are not being taken seriously. Since starting my blog I've gotten a few emails on this very same subject.

I do agree with Zorba Paster and Chris who say... "Get The Diagnosis". I just wish it wasn't so hard.

52 comments:

Tammy said...

This sad part of this particular blog entry is that it is 100% accurate. I constantly get labeled as an overprotective parent and suggestions from the pediatrician and specialists to treat him like a “normal” kid. Are they serious? What is normal? Nothing about having a child at 24 weeks is normal. Normal implies usual, standard, regular, ordinary, typical, common, and conventional. However, we do get odd characteristics, unusual behavior, and atypical symptoms. When I bring my son to a doctor or specialist it’s because there is a problem or a condition that is being managed. He usually ends up with rare diagnosis’ for “normal kids” but typical for premature kids. Most kids don’t have sensory issues, fine motor problems, chronic sinusitis, and the list can go on and on, but they want me to treat him like most kids. My child is extraordinary and I refuse to give into their intimidations. I will continue to be proactive and advocate for my child and his special needs. I just wish they would listen more and realize we’re on the same team. Kudos, Stacy, for bringing this up. I really needed to let that frustration out. Thanks again!
-Tammy

Anonymous said...

Oh, the perfidy!

The docs want to have it both ways
--use the excuse of prematurity when it suits their purposes; and ask you to stop viewing your daughter as a preemie, when it suits their purposes.

As I said before, this is not playing fair. It is not dealing with parents/patients honestly.

If a doc cannot arrive at a diagnosis, say so, honestly, and refer the patient on to the next person up the ladder of expertise.

Also, keep in mind that without a diagnosis or ruling-out of a diagnosis, the insurance company may balk at paying for the visits and tests---so, any way you slice it, you'd better get a diagnosis.

Chris and Vic

Helen Harrison said...

One of the big problems for parents of preemies is finding regular pediatricians who will treat their children at all. Pediatricians are, understandably, frightened of having prematurely-born children in their practices. They are too complex and time consuming and scary.

I'm beginning to think that a new pediatric specialty needs to form to provide the complicated after-care preemies often need throughout childhood. And then we'll need new adult specialists to handle the problems that turn up later.

We currently have a reported oversupply of neonatologists -- 2 to 6 times as many neonatologists per live birth as other developed countries. (Yet this hasn't helped our neonatal mortality rate much, but I suspect it has helped expand neonatal care to new populations of preemies -- i.e. micropreemies.)

Perhaps some pediatricians considering going into neonatology could be funneled off into a post-neonatal "preemie care" pediatric sub-speciality. It wouldn't be *nearly* as glamorous as "rescuing babies," and it wouldn't pay *nearly* as well, of course.

I'm not holding my breath on this, but it's something we all badly need.

Aidan's mom said...

Interesting thought Helen. I was *extremely* careful in selecting Aidan's ped. I was a drug rep for years before my son was born and knew virtually every pediatrician breathing in the Seattle area. Long before we even got pregnant, I knew he was going to be our son's ped. Top of his medical school class, had 3 kids of his own who were by his own admission very different from each other (I liked that), and had a practice with typical kids, preemies, etc.

Only in the NICU did I go on to discover that our ped had considered neonatology and changed his mind. He was pretty much the top recommended ped in the area for preemies and had 30+ preemies in his practice.

I almost think that it is time that pediatricians that "specialize" in preemies are noted as such in provider directories.

Lori

Anonymous said...

There is another way to answer the need: medical home.

In 1967, The American Academy of Pediatrics espoused the idea of "medical home," that is, a modality for care delivery to Children with Special Healthcare Needs (CSHCN). "Medical Home" did not catch on. It still has not caught on, except in small pockets around the county--New Hampshire, Vermont, one or the other Western states, and a 3-yr-long effort in one metro Milwaukee pediatric practice that I know of here in my state, WI.

Medical Home means that kids with special healthcare needs--preemies being a perfect example of the complex and chronic needs--will get comprehensive care, care coordination with specialists and therapists and schools. Parents become partners. Accessibility is paramount, as is follow-up. The care is culturally sensitive, etc.

If the peds would respond to their own professional org, the AAP, and establish medical home practices, the preemies and the kids with ADHD, diabetes, asthma, CP, genetic conditions, etc. would get the kind of attention they need.

Chris and Vic

Joan said...

OK, it might be wise to get the diagnosis - but where?

For one example,I've had no where to turn to get real help for my son's eating issues, or disorder, or what ever you want to call it - that which is apparently common among preemies - but is not appropriately understood, diagnosed or treated.

Where to go? Nowhere - there is nowhere to go that I know. Nowhere to go for REAL help, that is.

Doctors told me he would "grow out of it" since he was a baby. He' a young man, now - and it hasn't changed. The ones we've seen don't know - they stare blankly at me without an answer.

Joan

Anonymous said...

Joan, it is a cop-out for a doc to stare blankly.

He needs to refer you on to the next expert. He needs to go online and use the diagnostic supports/networks available. Look up studies, like mad, like we do, here on this list.

S/he needs to suggest Mayo or Cleveland Clinic or wherever the experts live. He needs to find clinical trials that yield new data/diagnoses. S/he needs to have a creative thought or two, and have the indomitable spirit to pursue the diagnosis.

You, as the parent, have the indomitable spirit to deal with the feeding issues daily (it would be called clinical expertise in medicalese). Find a doc that can match YOUR OWN indomitable spirit/pereseverance. Insist that your docs help you find other knowledgeable docs/specialists.

I know that all of us have only so much energy and time, especially after years of uphill battling. And if you have figured out tricks and means of getting your kid to feed/grow, you may think of his condition as "stable" and let it ride. But we also know that all it would take is a bout of flu for our kiddo, who is just on the edge with nutrition and hydration, to go over the edge and be in a bad place. Our kiddos can quickly become unstable . . . So, perhaps, when they are stable is the BEST time to pursue answers--without the pressure of our kid being hospitalized on I.V. fluids, and our missing work, and scrambling to find answers in a big hurry.

You know what I'm saying--hold their feet to the fire. Diagnosis is supposed to be a developed skill in the practice of medicine. Keep dogging away at the problems till there IS a diagnosis. Parents know very well how to keep dogging away at an unresolved problem--docs can learn to dog-away, too.

Chris and Vic

terri w/2 said...

Yes, there definitely SHOULD be a sub-specialty devoted to preemie care following the NICU. If that subspecialty ever does pop up, I wanna work for that practice!

I've also thought for a long, long time about the need for long-term care for preemies specifically. There should be care centers devoted to respite care, behavioral issues, post-surgery care, or for those extremely disabled children, full-time care. Right now parents are expected to do it all once the NICU doors close behind us. .

Advocacy is exhausting, no doubt about it. .we had to advocate just last week (again) for my daughter's gall bladder issues. She went to the ER with severe stomach pain, which was basically poo pooed by an ER doc even though a gallstone was found on a CT scan and ultrasound. Upon discharge, I called a local surgeon from another practice and got her in to see him, (and took copies of the scans with us). He scheduled her for surgery 2 days later. When her gallbladder was removed, he said that it contained scar tissue inside, so he suspects she's been having gallbladder attacks for awhile.

Frustrating as this is, I wonder about the children of parents who do not have advocacy skills like parents on this list. Too often parents trust what any physician tells them and that's it.

The NICU experience for us has caused extreme distrust in physicians - however, this seems to have resulted in better care for my kids, as I question everything.

NICU101 said...

As the mother of 3 kids - 2 preemies, I have to say that part of your advocacy for your child needs to include finding the right pediatrician for them. Our oldest daughter's first ped was layed back about everything, and didn't take me seriously, so after 2 appointments in one month that didn't satisfy me, we got a new pediatrician. That new doctor never lets anything slide or pushes anything off on prematurity. She may comment that the problem we're having is common in preemies, but that does not stop her from ordering tests, x-rays, etc to make sure we know what we are dealing with and what can be done about it.

Bottom line, if your ped isn't giving you what you need, and you are clearly articulating your concerns, then it is time to go someplace else. Find a ped that likes to work with kids with complex medical issues. Call the nearest Children's Hospital and ask for a reference for a ped that does "special care" or likes to work with kids with problems like yours. They may even have a special peds clinic at the hospital that will meet your needs.

The Preemie Experiment said...

nicu101 wrote: "Bottom line, if your ped isn't giving you what you need, and you are clearly articulating your concerns, then it is time to go someplace else."

I couldn't agree more. When we were still living in Illinois (near Chicago) we changed pediatricians 5 times before Paige was 5. Neurologists... 7 before Paige was 5. GI... 2 times.

Can you see the pattern here? Guess what we were labeled? With each and every doctor, I can tell you exactly what went wrong. It's still that strong and raw for me. I'll never forget the way we/Paige was treated by some docs. And, like I've written about before... most of the appointments ended with "well, she looks good to me"

Then we moved to a state/area where pediatric care is so lacking that we only have 1 pediatric neurologist and we even have a major kids hospital. Only 3 peds GI's (we've gone through all of them). Pediatricians... I gave up and now we see a family doc. He knows nothing about prematurity but doesn't roll his eyes when we walk in.

Just like others have mentioned... Strong advocacy breaks you down after a while.

I bury my head in the sand at times and then come out when I'm ready to deal with it all. I think parents of kids with issues need to do this every once in a while.

The most recent issue that has caused me to find comfort in the nice cool sand is Paige's dilating eyes. There are many times when her pupils cover almost her entire blue eyes. Psych says it's not his meds and wonders why she is not having headaches or complaining of brightness when it happens. Cardiologist shrugged his shoulders. Eye doc never saw it happen and has no idea what it could be. Next? Peds neuro? It will take over 8 months to get an appointment. He will then repeat her EEG, find it is still abnormal and shrug his shoulders.

Ugh.

The Preemie Experiment said...

Helen wrote: "I'm beginning to think that a new pediatric specialty needs to form to provide the complicated after-care preemies often need throughout childhood."

A few days ago, after watching a pediatric surgery show, Paige reminded me that she wants to be a doctor. We've been hearing this for as long as I can remember. She is pretty serious (for now). She got a real microscope for Christmas, watches every reality medical show she can find and likes to do the surgeries on http://edheads.org/.

She has always said she wanted to be a surgeon. But this time she told me that she wants to be a preemie doctor. When I asked the reason why she said, "because preemies need better doctors. Ya know mom, one who won't call a preemie kid "skinny" to their face." She asked me why I don't take her to a preemie doc. She was surprised to find out that no such specialists existed. And, in true Paige form, she responded with, "Geesh. Since so many preemies are born each year you would think there would be preemie doctors in every state."

I love the way she thinks!

I told her that she could create that specialty and told her that people would be knocking her door down to get in.

The Preemie Experiment said...

Also, I still firmly believe that the more impacted a child, the easier it is to get help.

When we walk into a new doctor who has reviewed Paige's history, (but not seen her) we get the same expression every time. They expect her to "look" a certain way. Immediately I know we will not get the help she needs. The doc then forms an opinion and the type of care she receives changes.

Paige is an excellent advocate for herself too. The type of care she receives suffers because of this.

"She looks good to me"
"She is too intelligent to have..."
"There is no way she is experiencing.... She would not be so chipper."
"There is no way she can be having... She would be tired."
"If she really had... she would be in pain."

I've heard them all. And more.

The Preemie Experiment said...

Sorry everyone, this is off topic..

Tammy wrote: "Most kids don’t have... chronic sinusitis...

Tammy, have you had him evaluated by an ENT? So many preemies have early onset of chronic sinusitis. Paige suffered for years. She was on antibiotics for 2 weeks then off for 2-4 weeks. They infection would come back. This cycle was repeated for almost 6 years. When we moved she was seen by an ENT who was helping us with her sleep study (done in prior state). He felt that her sinusitis was due to her tonsils and adenoids. They were not enlarged but because her neck was small, they were preventing draining. Her surgery was a huge success and she has had only had 1 sinus infection since (almost 3 years). Her apnea (hypopnea) is gone too.

We aren't the only success story either. There are many parents of older preemies that have gone the same route and have had the same outcome.

Just a thought.

Joan said...

Hi Chris,

I agree it's a cop out for docs to stare blankly.

I think our experiences illustrate that docs have a profound level of ignorance regarding prematurely born children. It's not in their bag of tricks.

I have very low expectations of physicians regarding the needs of this population.

When we talk about our children's issues to physicians - it's like they are hearing about an imaginary place like Atlantis - an entire civilization buried deep beneath the waves - submerged and obscured - although, according to some, a place with a possible reality.

And when our Atlantis is discovered, when it rises from beneath the waves and its contours and landscapes become defined, and the suffering of its children becomes apparent, we will see the inhabitants of the land who have lived there - like Paige, our someday physician - leading the way with a light like a beacon - the light of wisdom, intelligence and knowledge - an intelligence and wisdom that can only come from an extraordinary and hidden and suffering civilization.

Joan

Helen Harrison said...

To Stacy and any docs who may be reading this:

If Paige's pupils are unnaturally dilated (all the time?) could this possibly lead to retinal damage from all the light that goes through?

Laura said...

preaching to the choir here. daniel was diagnosed as failure to thrive at age 6 months and although he would not eat, seriously would not eat, his doc refused to believe it telling me that no baby would allow themselves to go hungry or thirsty. instead he forced me to jump through hoops hospitalizing both of us with a suspected munchausen's by proxy diagnosis with orders that my son was to be only bottle fed and no iv hydration no matter how long he refused. he went 36 freaking hours taking only a collective 8 hours force fed to him by myself and staff alike...actually 6 hours into the admission, i refused to feed him with the nursing staff's backing stating that if it was me then surely he would eat...he didn't and the pedi reluctantly admitted perhaps he had other issues. he received a g tube a week later which was something i had begged for for over 5 weeks. seeing the dramatic change in my son once a normal feeding routine was established made me so angry.
a year later i worked with that pedi with another infant patient with similar issues. this time i was the nurse and whoo-boy did he get an earful from me when he started his "no baby will starve themselves" lecture with me over the phone when i called asking for an iv tko order during his hunger challenge orders. he shut up and obliged when i identified myself not only as the patient's nurse but the mother of a former patient of his.
after this experience i seriously work with my convalescing preemie patients' parents for preparing them for this potential concern and how to work for the benefit of their babies.
to me nothing makes a parent feel more like a failure than to be unable to feed their child for whatever the reason and having walked in those shoes i feel that this should not have to happen.

Laura said...

oops!
i really need to not debate with my teenagers while typing on my computer....my son went 36 hours taking collectively only 8 ounces in that period of time....i hope that makes more sense.

terri w/2 said...

Wow, Laura. What an ASS that pediatrician was! I wonder just how many of us have been accused of Munchausen or maybe just "wondered about" due to our kids atypical behaviors. I know that there is a website for mothers who've been falsly accused of Munchausen by proxy. In addition, a parent advocacy group mentioned once that in divorce situations with kids with disabilities, the opposing parent (usually dad) Munchausen may come up as a strategy. With our children whose diagnosis are so vague and so little is understood about the feeding issues, behavioral problems, etc., this can be a very real concern.

I'm glad you gave him an ear full when he pulled the same thing again. He deserved this and so much more. .

Once again - there needs to be a preemie subspecialty as Helen suggested to address these very real issues! It's so easy to just blame the mom when things don't follow the typical developmental track.

Anonymous said...

Although the issues may be even more complex for premmies, this is the standard attitude to all special needs children, diagnosed or not. The fact is, it is the parents who are the experts on these complex situations, but most doctors have problems with that. I am sure I have "Munchausen's?" floating around in our file somewhere - but usually not for long. Doctors like to cure, and like textbook cases - so heaven help us. Nocturnal epilepsy accompanied with vomiting and status epilepticus was our hardest battle. I could see the doctors roll their eyes at this neurotic mother when I said she had been fitting for 20+ minutes. You could see them translate that to "a couple of minutes - mother exaggerating". There was a report here in England a while ago that showed that people with learning difficulties had an unacceptably short life expectancy because the medical profession were not too bothered. It is a battle - but a battle we will all go on fighting.

Katenali said...

I think everyone has a different expected standard of care in mind when dealing with the medical establishment. I actually don't enter any contact situation with the doctors with a sense or expectation that the end result will be your child (or you) have XXX condition. It can be treated Y or Z way(s) and has this prognosis - it's just not my experience, so I do not carry the preconceived notion it is their job - does it happen from time to time - of course ... you get lucky and the condition is common and has very specific symptoms and the doctor you're visiting has seen it before. But typically, what I'm hoping for is a guess about the possibility that the current symptoms are part of a more dire diagnosis. If they can give me a hint about how to tell if things are going south (that wouldn't be part of obvious observation) then terrific they get an A. But if I'm taking a 12 year old child into a doctor with an unlikely sort of symptom like 'chest pain' - I don't actually think I'm going to get a action plan beyond the "watch and see" what happens and perhaps a shot in the dark medication (which I often wouldn't even GIVE to the child - knowing it was just a "get the parent out of my office" sort of prescription). If my own research had turned up the data that the medicine might be helpfully diagnostic - I'll give it a shot. I actually don't have any expectations of deep engagement into the diagnosis process even if there are clear clinical findings.

I look at MD's in the exact same way I look at educators - they're just trying to keep the sheep in the pen and get them through the chute to the next pen and don't have time to deal with the occasional goat that wanders into the herd. It is the owner of the goats responsibility to get them into the next pen if they don't go with the sheep.

I was very recently reminded of how stupid the medical system in the US is when I atypically agreed to have Ali examined by a genetics guru. After we had wasted a day to accomplish this visit - I was deeply struck by the realization of how stupid it was ... it doesn't matter one bit if Ali gets a "diagnosis" ... it's like CP ... having a diagnosis cannot change anything, but if you need equipment you cannot afford, then having a label can help you get that - but wouldn't it be better if we just had the ability to provide our children (and ourselves) whatever equipment and services we need to make our lives as happy and productive as possible without being predicated on a meaningless medical label ? Why do we feel that doctors need to go on a medical investigation when what needs to happen is the child needs XX assistance ? I think we need to take back sensible control and reset the US health care system into consumer hands = we should be able to say "my child needs a wheelchair" because I'm the expert on her/his mobility and have that be the necessary 'approval' step.

I don't expect MD's to help me beyond my specific request - "I would like Test A", I would like to try "Medicine B" ... I felt this way for most of my adult life, but had a situation a few years ago, that sort of sealed my beliefs. I had West Nile virus - I did not believe there was any possibility that I had that particular disorder because I was waaay too sick based on everything I'd read in the media and online(so clearly, our own investigative tools aren't always the best - nor are our MD's resources). By the time I had been rendered into an altered state of consciousness it was clear that the MD's suggestion that the rash I had developed mid-disease was Parvo was clearly incorrect. My paramedic boyfriend convinced the ER that they should test me for WNV .... and low and behold ... it was WNV - but the point to that story was, having a 'diagnosis' and not having a 'diagnosis' was the same exact situation. It didn't matter, didn't change the course, provided no treatment (because none exists) etc..etc... but did of course generate a large medical bill. I'd have been just as safe (and way more comfortable) without a diagnosis. That was a turning point for me in my view and relationship with the medical profession. I now focus on the pragmatic and rational care options to improve the day to day quality of life for myself and my kids. I use medical advice/service, only to rule out any concerns I might have that the symptoms observed may be caused by a more drastic condition that I have researched if symptoms can overlap between serious and benign conditions.
In my recent genetics example with Ali ... I've spent a good amount of time researching the possibilities and outcomes and cannot come up with a good reason to continue on with a very expensive evaluation that even if it comes up with a finding cannot change any outcome .... so why would I bother ? I think we often accept medical treatment without asking the most important first question which is "what happens if I do nothing ?" I don't have a burning desire for a diagnosis if having that diagnosis doesn't change anything. If you have a ruptured appendix it's probably good to catch that diagnosis ... if you have some obtuse genetics condition ... seems like a lot of money for a bag of air.

=Sheila

Helen Harrison said...

To All:

These accounts of parent-abuse by physicians are so infuriating! And the smug ignorance so many neonatologists have about NICU survivors -- most of whom, they claim, are "completely normal" -- is outrageous!

I have a neonatologist acquaintance whose name is a household word (among other neonatologists, at least) who assured me that no preemie from his unit ever goes home with a g-tube.

I had to inform him that they may not go *home* with them, but they end up with them all too often for failure to thrive (after the mother has been thoroughly investigated and traumatized).

Has this man ever visited a follow-up clinic? How many of these seriously involved kids actually return for follow-up?

I just heard a presentation at Hot Topics in Neonatology by another big-name neo who questioned whether GERD in preemies is real. I'm not about to argue definitions here, but *something* is going on that makes many preemies unwilling and unable to eat. This is a huge, horrible problem that is often ignored or used as an excuse to beat up parents.

We need to fight back -- perhaps we could start "educational" picketing at neonatal and pediatric conferences. We also need to write up our experiences and send them out to parenting and childbirth magazines, with copies to our children's NICUs and pediatricians.

The docs need to wake up and see what is happening to our children and our families. They may not always be able to help, but at least they can stop being part of the problem.

Anonymous said...

But Sheila, what would happen with respect to insurance coverage if you didn't have a diagnosis or an anti-diagnosis (a rule-out statement) on the records? Would insurance pay-up? I guess they wouldn't pay for treatment that doesn't exist--but would they pay for the tests? Or for further testing?

On the subject of Munchausen by Proxy . . . The Dec. 2007 issue of RN had an article with numerous references. Many of them seem to be available on the web. If anyone is interested, contact me through PE--she will give you my email addy--and I will send them to you. They are current.

In this, that is, Munchausen by Proxy, we are all at high risk.
Our kids have unsolved problems for which we bring them in to the ped's office or ER repeatedly. ("Keep a watchful eye on mothers who frequent the ED, don't express relief when test results reveal there's no medical problem, or seem to enjoy being in the hospital setting. They may be unusually calm in spite of their child's poor health, welcome additional procedures regardless of the risks involved, or thrive on sympathy and attention." This quote is from the Nemours Foundation. www.kidshealth.org/parent/general/sick/munchausen.html
5 Nov 2007)

Chris and Vic

Anonymous said...

In my ref from the Nemours Foundation, the "html" got cut off from the www.kidshealth
addy . . .
C & V

katenali said...

I just heard a presentation at Hot Topics in Neonatology by another big-name neo who questioned whether GERD in preemies is real. I'm not about to argue definitions here, but *something* is going on that makes many preemies unwilling and unable to eat. This is a huge, horrible problem that is often ignored or used as an excuse to beat up parents

Dear Helen,

I find this situation totally preposterous. Even run of the mill pediatricians are acknowledging that GERD is a serious issue in infants, particularly preemie's. I thought the article I read last week that someone sent to p-l was interesting because it postulated that body positioning of preemies may be a major contributing factor to their GERD issues.

Regardless of whether or not MD's want to diagnose or acknowledge severe, severe feeding disorders in the preemie cohort, the MOUNTAIN of anecdotal evidence available is totally capable of drowning their uninformed opinions out. In 12 years the "major concerns" on the p-l list have shifted somewhat, but of the concerns that have been a source of discussion and emotional angst - feeding disorders have not only remained in the top 10, they've consistently remained at the TOP of the top 10.

Just in the last week, I received private email from two members whose severely feeding disordered children had landed them in situation with childrens services in their hometown's, accused of Munchausens' and worse. It is a disgrace. I don't feel we should rely on our doctors for an accurate diagnosis for everything - but they SHOULD keep quiet rather than propose a diagnosis that is merely a good defense against malpractice, by casting a dark shadow on the parents first.

sheila

katenali said...

But Sheila, what would happen with respect to insurance coverage if you didn't have a diagnosis or an anti-diagnosis (a rule-out statement) on the records? Would insurance pay-up? I guess they wouldn't pay for treatment that doesn't exist--but would they pay for the tests? Or for further testing?

Dear Chris,

I totally agree - the current climate in medicine today puts us entirely dependent on getting some doctor to give us some diagnosis - so that we can get things we need which in all likelihood have nothing specific to do with the 'treatment' of the diagnosis (ie, mobility or caregiving equipment for the parents of a child with CP) - it isn't going to help the CP - but it will help everyone's QOL in that situation. But was it *necessary* to have a CP diagnosis to recognize that a child with spastic quad CP needs help being lifted, help to move around etc..etc..

I agree that currently the MD's hold the keys to the treasury - I just question the value of that.

Hugs,
=S

The Preemie Experiment said...

Sheila wrote: "I don't have a burning desire for a diagnosis if having that diagnosis doesn't change anything."

I have been moving closer to this way of thinking for a few years now but... I will be the first to admit that the reason I end up at the specialist is because of an intense fear that something could be missed and Paige will die. I know this comes from the uncertainty of the NICU but it also comes from the memories of the times when I have just "accepted" what docs have said and then it turns out that Paige has something more.

I would love to be able to relax, breath and enjoy my child. Instead I am constantly staring at a child who seems to be on the verge of a catastrophic illness.

Why? Because docs throw their hands up in the air and give up. I wouldn't be more impressed with a doctor who says, "I'm sorry. I don't know what is going on with Paige. Let me talk to an associate and figure out who to send you to."

But, instead I am constantly treated like her health is no big deal. "Oh, don't worry about her dilated eyes. She seems fine to me." or "Don't worry that she isn't on the charts for weight or height anymore. She's a preemie."

I would love to be able to jump completely over to the other side and not need to find out the reason (diagnosis) for her issues. Unfortunately, the fear sucks the breath out of me. I've been right too many times. Ugh.

The Preemie Experiment said...

Chris wrote: "n this, that is, Munchausen by Proxy, we are all at high risk.
Our kids have unsolved problems for which we bring them in to the ped's office or ER repeatedly. ("Keep a watchful eye on mothers who frequent the ED, don't express relief when test results reveal there's no medical problem, or seem to enjoy being in the hospital setting. They may be unusually calm in spite of their child's poor health, welcome additional procedures regardless of the risks involved, or thrive on sympathy and attention." This quote is from the Nemours Foundation."

You are so right... we are all at risk! We had a family member mention it to us once, in an accusatory tone. It was horrible.

I know of parents who have been flat out accused. I know of parents of mito kids who have been flat out accused.

It's sickening. I wonder what the real numbers show... people accused versus REAL cases?

Very scary!

Anonymous said...

Stacy, the article in RN magazine said that this condition is rare--about 200 fatal or near-fatal cases per year--most involving suffocation or poisoning.

Schrier, H. (2002). Munchausen by proxy defined. www.pediatrics.org/cgi/content/full/110/5/985 (18 Sept 2007)

C & V

The Preemie Experiment said...

Chris wrote: "Stacy, the article in RN magazine said that this condition is rare--about 200 fatal or near-fatal cases per year--most involving suffocation or poisoning."

Yet, so many parents talk about being accused or at least that it was inferred. Sickening.

terri w/2 said...

http://www.msbp.com/

This website is a very frightening look at just how far the medical and legal system can carry a munchausen accusation. I read it thinking that this could easily have been me when trying to get my children medical care at some point. Any preemie parent struggling with "unseen" health issues in their kids may want to take a look here. Furthermore, if you type in a search "Munchausen false accusation" a mountain of websites pop up, including attorney websites that specialize in false accusations.

The Preemie Experiment said...

Helen Harrison said...

To Stacy and any docs who may be reading this:

If Paige's pupils are unnaturally dilated (all the time?) could this possibly lead to retinal damage from all the light that goes through?"

Hi Helen,

I'm beginning to pull my head out of the sand with regards to Paige's eyes. I was just talking to hubby about it tonight. I was saying how I get so angry at myself because I have no "fight" left in me at times, especially when I know what I am up against. I get so down about it.

But, I'm cleaning the sand out of my ears, brushing it out of my hair and getting back on the diagnosis train.

I was doing some searching tonight and dysautonomia has resurfaced. It has come up quite a few times over the years. She has many of the symptoms.

I'm even wondering if her dilated eyes could be related.

But the local cardiologist, who specializes in dysautonomia, brushed off my questions when Paige was there a few months ago. We went there to make sure her palpatations were not cardiac in nature. Everyone felt they were just her panic attacks (including myself), despite being on 100mg of Zoloft. He even said that her blood pressure was very low and we should be adding salt to her foods.

When I mentioned that a few other docs have thrown out "dysautonomia" when she was much younger, as a possible cause of her issues (dizzy when standing up, rapid heart rate, low blood pressure, fatigue, headaches, anxiety, panic attacks), and how they said the tilt table test may be in her future, the new cardio gave me a disgusted look and said that it would be cruel to put her through a tilt table test at her age. !!!

So, here is where I stand. Do I travel to another state to go to another cardio? Talk to her doc who will agree with the cardio (since he is a highly sought out cardio whom every doc loves)? Or just wait it out? Maddening, isn't it?

The biggest problem right now, besides her dilated eyes, is that she has been VERY fatigued. There are some days where she is having trouble making it through school. She isn't sleepy, just fatigued. And, she has been complaining of being dizzy a lot. We were starting to think that her seizures were back.

I'm sure it's just hormones tonight but I'm so teary over this. My baby is suffering and I don't have any "fight" in me right now.

Helen Harrison said...

To Stacy,

Has anyone ever mentioned that fixed dilated pupils might damage the retina by allowing too much light to come through?

I don't know if this is the case... but in the short run, before trying for a diagnosis, I'm wondering if Paige should be wearing sunglasses to protect her eyes from possible light damage.

I really don't know if this is an issue to worry about or not... and if any docs are reading this, can you help???

Anonymous said...

This is probably going to be taken wrongly, but it is not meant as an inflammatory statement. *Sometimes* we as preemie parents get so caught up in the trench warfare that our lives have become, that we forget how to relax. We become hypervigalent, seeing every quirk in our child as a signal of impending doom, and get really bent out of shape that the medical community doesn't see the same thing. We jump from symptom to symptom, specialist to specialist, demanding that they listen and "do something", when there really isn't anything to be done. Then when something does come along that needs to be addressed, we are already labeled as "The Boy Who Cried Wolf" and then our children suffer.

Anonymous said...

Re: dilated eyes. Yes, this could be dysautonomia.

Dizziness could be dysautonomia but also be middle ear infection (most likely viral). Dysautonomia with low blood pressure (hypotension) can cause both fatigue and dizziness. You can monitor her blood pressure at home, but she would need to have the cuff selected for the size of her arm or you will get falsly high or low readings.

Ask your neuro, not cardio. Many children with brain injury have dysautomia (though they may not be formally diagnosed or treated as such) and these will be children the neuro will be seeing. BTW---and I DONT mean this as a challenge, but to put in perspective some of the comments from your docs---in comparison to them, your daughter does look really really good. Why? because she walks and talks. Most of the children with dysautonomia from bad brain injury don't.

When you tell neuro about pupils, other information you want to give:

1. does she have pain with bright light?
2. Is her vision affected?
3. Try this if she can tolerate bright light (Or even if she can't, if you can ask her to cooperate). Get her in a dark room (doesn't have to be pitch black, just darkish) and shine a light for 3-4 sec into each pupil, one at a time. The pupil should constrict.

If either one pupil or both don't constrict, she should be seen sooner rather than later.

ALSO, look at her medications. Dilated pupils may be a side effect especially of some meds used for wheezing, cough (even those availible OTC) and reflux.

In addition to dysautonomia and meds, the rare but bad stuff: certain optic and brain tumors can cause this. Head CAT scans (and all CAT scans) are being shown to increase risk of brain tumor development. Has she had any? (And this is another reason, that if stuff can be ruled out without CATs, it's better). INgestions can cause this---does anyone else in the house use blood pressure meds? Viral infections can cause this---usually no treatment and have to run their course.

A final thought: When 99% of the population falls in a certain range, 1% of the population is totally normal and does not.

katenali said...

In addition to dysautonomia and meds, the rare but bad stuff: certain optic and brain tumors can cause this. Head CAT scans (and all CAT scans) are being shown to increase risk of brain tumor development. Has she had any? (And this is another reason, that if stuff can be ruled out without CATs, it's better).


Hi Anon,

It is interesting that you mention this CT issue. Recently, my younger daughter Ali had some evaluations surrounding her chest pain symptoms and dilated cardiomyopathy diagnosis (which will hopefully turn out to be temporary virus related form) - but anyway, because she fit the general dysmorphic features of Marfans, her Pediatrician agreed that taking a look at her aorta was not an entirely unwise option (because quite frankly, though her chest pain could have cardiac in origin it's retro-sternal placement, and radiating to her back characteristics had a 'vascular' ring to it. (Side bar info - my family has a HUGE history of aneurysm both male and female members). He initially wanted to order a chest CT (and when I mentioned reading this new data about CT he did one of the 'oh god one of those irritating internet parent eye rolls' LOL ... he said, well the data is far from conclusive and we've been using CT longer than MRI so you'd think there would be a stronger pattern - but what is it that YOU want ?? I asked if there was anything less diagnostic about an MRI/MRA and he said he'd ask the radiologist. He called later and said, we put the referral in for MRI instead of CT are you happy ?

If he and I weren't so close I might have been irritated, but instead I simply said, No ... three weeks snorkingly in the pristine blue waters in Belize or other points in the Carribean would make me happy ... but thanks for being so reasonable about the testing.

I have moderately regular imaging studies done - and I sort of lucked out that most are ordered for MRI, other than the fact that I need an annual skeletal survey for lytic lesions that is traditional flat x-ray... I only hope that doesn't turn out to be the thing that changes my plasma cell dyscrasia into something more ominous - but it would be funny if it did considering my outward suspiciion of all things "medico".

How long before the concerns about CT become part of the general medical knowledge base ? There is seemingly some pretty good data about its risks already available.

I did want to mention to Stacy that Ali does not have dysautonomia, but she does have pretty much all the symptoms you listed for Paige 'cept the pupils (though honestly her eyes are brown so I don't think I'd notice that) and her issues were explained away via her cardiac issues (dizziness, severe fatigue, PVC's, sinus arrythmia's, and low BP). Most of her symptoms were dramatically improved with beta-blockers, but as an interesting coincidence, her aunt (whom she greatly resembles) has a very severe form of neurocardiogenic syncope "aka" vasovagal syndrome ... she went from specialist to specialist until she found a cardiologist who did do a tilt table test (which in her case only lasted about 20 to 30 seconds because she blacked out at the first tilt). She's on the same beta blocker as Ali. I'm guessing that at least some of Ali's symptoms probably have to do with being genetically similar to her Aunt ... but I don't think it is necessary to put her through the tilt table if she's already on atenolol and it is helping (that would be one of those label things that are probably unnecessary if you've already come up with a plan (Ali has a whole diet, behavioral, emotional and RX plan to deal with her symptoms) She feels pretty good about everything and that is all I really wanted from the process in the first place.

=sheila

medrecgal said...

Stacy,

Again you managed to touch something terrifically familiar, with your comment that "a few days ago, after watching a pediatric surgery show, Paige reminded me that she wants to be a doctor. We've been hearing this for as long as I can remember..." This was completely reminiscent of my experiences in high school when they first started to realize I had some sort of cognitive issues, because they delved very deeply into my obvious and persisting desire for a career in medicine. My father's comment to more than one school counselor was something like, "She's wanted to be a doctor ever since she could talk...". And after taking a couple of totally wrong directions thanks to supposed experts who didn't "get it" that it wasn't an option for my psychological health to just forget about pursuing something at least related to medicine, we finally struck a compromise between getting in completely over my head thanks to NLD and ditching the whole notion.

I'll always be a little "weird" in that I watch all of those strange medical reality type shows (I love Discovery Health and related channels), read medical journals, and am not particularly squeamish. But some suggest that's not surprising given my start in life. For some a precarious entrance may drive them to fear all things medical; for others, it will drive them to a fascination with such things. At least now I've finally found a way to use it productively. Hopefully if Paige continues to express an interest, she will do the same.

SCE said...

Funny, reading this, after all these months of reading your blog, and being left to contemplate that while in some cases there is definitely something "wrong", there may not actually BE an appropriate medical diagnosis yet (let alone a proven effective treatment)for some of these difficult to define preemie aftermath ailments. Yet, labeling moms as overprotective, and telling them to treat their children as "normal" is just nauseating.

I understand that without a diagnosis, there is no treatment, and thus no chance of improving things, and without a diagnosis, the parent is unfairly just left looking like a nutcase. But I am a little leery though, of pushing medical professionals to diagnosis, citing the old saying that if you get on the wrong train, you'll end up at the wrong station.

Anonymous said...

Hi, I am sorry for all of the anguish you have been through. The medical maze can be really horrific. I have had difficulties with doctors in my own medical care, and it is infinitely more frustrating when it is a child. Doctors are super-educated guessers in a lot of cases, and probability dictates that a large percentage of the time they will be right, but that is no comfort when you are the improbable case.

I am wondering whether you think the root cause of most of Paige's medical issues is preemie-related, or whether it is possible that one or more of the medical issues are the root cause of the preemie-ness? I have often wondered this in the case of my two kiddos--perhaps something as-yet-unknown necessitated their early birth, and being preemies was the best outcome for them.

Helen Harrison said...

To anonymous who wrote: "I am wondering whether you think the root cause of most of Paige's medical issues is preemie-related, or whether it is possible that one or more of the medical issues are the root cause of the preemie-ness?"
***

This is a really interesting question, and there is some evidence for damage happening to preemies both prenatally and postnally.

Most extremely preterm babies appear to be born early because of an underlying bacterial chorioamniotis (infection in the membranes). Exposure to bacteria in utero seems to set preemies up for BPD and, perhaps, some of the other serious problems of prematurity.

However, in baboon experiments, when baboon fetuses from totally healthy pregnancies are delivered prematurely on purpose, they later show signs of brain damage, indicating that preterm delivery *in and of itself* causes some degree of brain injury, even if there hasn't been anything adverse going on prenatally.

Then, if you put the baby baboons on ventilators the damage becomes even worse (CPAP seems less harmful).

I suspect that other organs (kidneys, liver, lungs, etc.) are also permanently affected along with the brain as a result of the entire perinatal experience.

Tammy said...

The preemie experiement wrote,
"Tammy, have you had him evaluated by an ENT?"
Thanks Stacy. Daniel had tubes put in and adnoids taken out in 11/06. We didn't take out tonsils because they weren't a concern then. However, he was sick so much in 2007 and his tubes stopped working in October that he's scheduled to have his tonsils removed this Tuesday the 29th and a new set of tubes put in his ears. I'm hoping this stops him from getting sick so often, especially since oral antiobiotics don't work for him anymore. Please keep Daniel in your prayers. I can't stand having him go through surgery. My stomach is in knots. I'm sure you know how I'm feeling.
-Tammy-

The Laundress said...

Babe, you have given me a heart stop.

We are on "wait and watch" because my son has some sort of thing in his brain. We got the last of our formal paperwork in today's mail for Monday's annual brain MRI and neuro-onc visit.

We have had every single test known to medicine. We have seen pints and pints of blood drawn from our uber-needle phobic half-pint.

I have mailed scans and medical records all over the world to get all kinds of opinions (and some dismissive ain't nothings back.)

We tried to dodge this upcoming MRI. Got caught out by a urologist with a sly wit.

Your scaredy cat,
with a kid who really is NOT schizoprhenic nor autistic. He just wants to be better at soccer. Nope, no brain tumor there but rotten lousy thing to wait and watch. yeah, lots of people have it worse but just shakin' in my boots this week.

Whew, when Monday is over? Milkshakes all around!

Anonymous said...

Anonymous 1/22, 11:56 said:

. . . seeing every quirk in our child as a signal of impending doom, and get(ing) really bent out of shape that the medical community doesn't see the same thing. We jump from symptom to symptom, specialist to specialist, demanding that they listen and "do something", when there really isn't anything to be done. Then when something does come along that needs to be addressed, we are already labeled as "The Boy Who Cried Wolf" and then our children suffer.


Nope. I do not find this argument convincing . . . It sounds too much like "There is nothing more I can do. And/or I am giving up on your child."

I cannot hear that. I cannot work with a person who says that.

If a diagnostician (physician) says, in all honesty and humility, "I don't know what else to suggest/do," there is still a chance. If s/he says (even in annoyance), "What is it that you WANT me to do?!?" I can still work with that--it gives me an opening.

What would I put into that opening? A 2nd and 3rd opinion; referral on to another doc/specialist; CAM solutions; nutritional ideas; trials of this or that (med? treatment?); enrollment in a clinical trial related to the problem; researching the problem in the medical journals--even if there is "mere" anecdotal evidence, it is better than throwing up one's hands and giving up.

Some of us have tried HBOT. Some of us have tried hippotherapy. Some of us have our kids on diets. Some of us have tried "sensory suits". Some have tried chiropractic and/or cranio-sacral therapy. (We even looked into the Doman/Delacato therapeutic regime of patterning . . . which would have taken over our whole lives.)

What would you try/not try in order to help your child? What lengths would you go to to make your child's pain and disability less? How assertive would you be willing to be? What kind of advocacy skills would you be willing to develop?

I, for one, am willing to be seen as a nutcase. I am willing to beg. I am willing to be poor to pay for something that might help.

AND at some point--and only I will know where to draw this line, not the docs--I will accept the (lack of) diagnosis and treatment. And decide to live with it and make the best of it.

Chris and Vic

Helen Harrison said...

Someone once said that neonatologists are "creating a whole new population" of human beings, and they are. And we, the families of these children, are left to play out the "preemie experiment," and do the best we can with our children who are, unfortunately, far from normal.

But I do hope that when we if/when we reject the medical model (and I understand how parents like ourselves are tempted to do this), it doesn't mean taking up with the cure-alls of snake oil peddlars. There are so many people out there ready to play on our desperation and take what little money we have left -- some of them truly believe in their cures and can sound *so* convincing.

We really, *really* need to be cautious, skeptical, and look long and hard at the evidence.

Doman/Delacato is just one of many variants on the snake oil. And it has led to unbelievable tragedy.

Caveat emptor.

Dreaming again said...

God I hate the mitro wait!

We went through that, it was terrifying. We waited ..and waited ...and wondered ... waited for puberty ...and it's come ...and he's gotten better ...and so ..... .... .... the assumption that since he was discharged from the neuro's last week meant it was off the table.

Then a call from neuro yesterday to remind me
while he's discharged it's conditional
IF Arnold Chiari Symptoms don't crop up
IF Mitro doesn't rear
IF the epilepsy stays at bay
IF

IF

oh ...yeah ...

so, I watch my son this week, and I still see the slurred speech that others think is mumbling, the inability to find the right word at the right time, that others think is just not paying attention ...
the clumsiness
the lack of ability to understand where his body takes up space in this world

and I know

as far as he's come

we're not done ...we're still back where we were when he was 3

waiting ... wondernig

when?
IF?

Why.

Why so much dark in so much light ... it doesn't seem the two could co exist, but they do.

I'm the lucky mom ... the mom that had the neuro since he was 2, that never blamed me, and worked ... with a working diagnosis ...

some other docs ..eh ...

but the main doc ... he always went with a 'working diagnosis'

I learned to cling to that term ... it meant ... it works ..we have something to start with, something to base what we're doing on, and what we are going to do. A start point, and goals to get to, and a path on which to go ...

A possibility of fluidity if it proves to not be true (and ... in a few cases, it did) but the working diagnosis lead us right to the right diagnosis, which became the working diagnosis.

ok, done high jacking your comments girl. See ya in scrabulous!

Dreaming again said...

That should have read, the mom that had the neuro since he was 2 months.

He's 16 now.

The Preemie Experiment said...

Helen Harrison wrote: "But I do hope that when we if/when we reject the medical model (and I understand how parents like ourselves are tempted to do this), it doesn't mean taking up with the cure-alls of snake oil peddlars. There are so many people out there ready to play on our desperation and take what little money we have left -- some of them truly believe in their cures and can sound *so* convincing.

We really, *really* need to be cautious, skeptical, and look long and hard at the evidence."

I completely agree Helen. I still plan on starting a series of posts on alternative therapies. It hasn't been that easy though. So many of them are out there but there aren't many parents willing to speak out against them. The parents spend the money, don't get the results they were hoping for, but are then convinced that it was something that they themselves did wrong. Feeling foolish, they don't speak out. I'm still working on it though.

Anyone who wants to help, by contributing any piece of a post, please email me.

The Preemie Experiment said...

Dreaming Again wrote: "but the main doc ... he always went with a 'working diagnosis'"

Funny that you mention this term. We did have a doc, in our previous state, that used to use that term. But, it went something like this... "If we could only bottle all of these common preemie issues into one term we could then have a working diagnosis." We liked him, at first, because he was willing to look at each issues individually but then also look to see how it may fit in the puzzle. He used to even study the issues that weren't in his realm. Unfortunately he too got burnt out and eventually told us that we should just head to Mayo.

See you on scrabulous! I sure hope they don't take it away!! lol

The Preemie Experiment said...

Anonymous wrote: "his is probably going to be taken wrongly, but it is not meant as an inflammatory statement. *Sometimes* we as preemie parents get so caught up in the trench warfare that our lives have become, that we forget how to relax. We become hypervigalent, seeing every quirk in our child as a signal of impending doom, and get really bent out of shape that the medical community doesn't see the same thing. We jump from symptom to symptom, specialist to specialist, demanding that they listen and "do something", when there really isn't anything to be done. Then when something does come along that needs to be addressed, we are already labeled as "The Boy Who Cried Wolf" and then our children suffer."

I agree with what you are saying, I think.

In the beginning, when our kiddos are newly home from the NICU, we are still very much in a state of heightened alert. We then are put into early intervention, being told by OT's, PT's, etc what milestones are kiddos are not reaching. The heightened state continues.

We take our babies/toddlers to the doc because of every sniffle, cough and and sneeze, convinced that they are worse off then they are.

Then there is RSV season. Enough said.

The heightened state we have lived in for the past few years has now become our normal self. There is some relaxing but for the most part, we are waiting for the other shoe to drop.

Then, your baby/toddler becomes a child. Now the fun begins. That relaxing that you started to do gives way to the harsh realization that your child is so completely different than others their age.

Now they are growing. Their bodies hurt. They are struggling socially (with peers-not adults) and those little issues that everyone told you they would grow out of... become permanent.

We head to the docs for help. How can we not? Our little ones need help and now no one is listening.

The Preemie Experiment said...

medrecgal wrote: "For some a precarious entrance may drive them to fear all things medical; for others, it will drive them to a fascination with such things. At least now I've finally found a way to use it productively. Hopefully if Paige continues to express an interest, she will do the same."

I hope she does continue on. I think she would make a compassionate doc since she has gone through so much herself.

A few weeks ago I took her with me to the foot doc for Tyler. The doc started scraping a wart off of Tyler's foot when I saw Paige straining her neck to try to watch. I told her to come around so she could see. She never took her eyes off of the scalpel, watching every move the doc made.

When we got in the car she couldn't stop talking about it. It was really cute.

Katenali said...

Stacy wrote:
We really, *really* need to be cautious, skeptical, and look long and hard at the evidence."

I completely agree Helen. I still plan on starting a series of posts on alternative therapies. It hasn't been that easy though. So many of them are out there but there aren't many parents willing to speak out against them. The parents spend the money, don't get the results they were hoping for, but are then convinced that it was something that they themselves did wrong. Feeling foolish, they don't speak out. I'm still working on it though.


Hi Stacy,
I wouldn't have any trouble speaking out against alternative treatments that I felt were snake oil being perpetrated on vulnerable preemie parents... it's only that my actual experience has been the opposite. Conventional medicine has profitted more, and created less benefit in the preemie population than *ANYTHING* in the alternative realm.

I've never heard of a single alternative practioner accusing a preemie parent of Muchausen's by proxy or calling childrens services because the kid fell off their growth chart.

We *should* be able to count on mainstream medicine for support - but I just don't read that in my day to day dealings with hundreds and hundreds of preemie parents.

Sheila

medrecgal said...

As for curiosity in regards to watching actual procedures & such, I've always had that, too. Sometimes it's kind of funny, particularly since most people are sort of squeamish about those things and medical types don't expect patients to be especially interested. It's like I told the surgeon when I wound up in the hospital last year, "If I can't watch, I don't want to be there." Observation of such things, in some twisted way, helps quell the anxiety that usually comes with being a patient. Maybe that's a little weird, but that's OK.

Anonymous said...

I know I'm in late on this but I simply MUST comment on the erroneous CT scan scares. CT scans are ABSOLUTELY NOT being "shown" to increase cancer risk. This hype is based on a study published in the NEJM. The data is based upon THEORETICAL numbers - NOT actual numbers of cases. In fact, there is not once single documented case of anything caused by the dose of radiation inherent to CT scanning. The authors extrapolated risk numbers from the atomic blasts in Japan in WWII. First of all, the doses used in this study were well above those used in typical CT scanning techniques. Secondly, the machines used in this study were over 15 years old - today's machines are up to 50% less radiation. What's more, today's children's hopsitals' machines usually have dose-reduction software installed to further reduce the dose. Thirdly, the protocol used in the study were NOT the protocol set forth by radiological protection agencies that is used in hospitals. So PLEASE DO NOT SCARE PARENTS whose children NEED a CT Scan. This technology has saved countless lives and ruled out serious, serious conditions for others. It has eliminated the need for exploratory surgery for many preemies and other young children. PLUS, even if you do believe the study, the risk of your baby developing something scary from a single scan in a fraction of a percent. We're talking like 0.08% (as quoted in the study for a baby receiving a head CT at higher-than-normal levels). So please, don't be afraid of this technology. As parents, we naturally worry about our children, especially when they are given tests and other procedures that other kids don't get - but don't let this be something that you worry and fester about. The risk is MINISCULE, if not zero (remember, these are extrapolated theoretical numbers - they are not fact).