Thursday, May 22, 2008

Those Years Are Gone

Under my post "Guilt Revisited"

Future of Hope wrote:

"Anyways.... My guilt hits me full force whenever I look back at my son's early years. All of the time spent focused on this milestone or that, pushing and prodding for just "one more" skill, all the time spent running from PT to OT to SLP and back again. I would give literally anything to go back in time and get off of that merry-go-round. We lost so much. So much fun, so much "bonding", so much discovering and play. All in search of what was "supposed to be" instead of "what is". If he hadn't spent so much time pushed beyond his limits, would his social/emotional outlook be better? I missed so much that can't be gotten back - so many "firsts" that came so late that they brought with them more anxiety than joy. I was so wrong. I want my baby back. NOT my "preemie", not my "special needs child" but my BABY. the one that I had in my arms, and that I dreamed away."

Not one day has gone by since I first read her comment, that I haven't thought about the emotional impact of her words.

I have often thought back to the beginning years of Paige's life. We had various therapies 4 days a week, for her first 2 years. Physical therapy (twice a week), occupational therapy, speech therapy. 4 days a week of people coming out to our house to tell us all of the milestones she was not reaching and how to help her reach them. After 2 years, the time spent in therapy lessened to 3 days a week and we then saw the therapists at a pediatric therapy facility. It continued this way (some months increasing the amount of visits) for the first 5 years of her life.

Despite all of this therapy Paige still sat up late, crawled late, walked late, talked very late, has tone issues, fine motor issues and has severe sensory issues.

Looking back, do I feel that therapy was beneficial? No.

It was not beneficial for Paige but it was beneficial for me. I felt that I was doing everything to help her. How can we turn away services that are supposed to help our child? After giving birth to a preemie, is any parent in the right emotional state to ask questions as to the efficacy of therapy? I know I sure wasn't!

I have met a few parents who did not put their child through therapy. I fully expected to see a child who had not progressed as far as Paige but this is not the case. All of the children that I have met, who did not have therapy, are exactly where Paige is at... tone issues, fine motor issues and sensory issues.

I've always been upset about how much Paige (along with her Dad and I) had been put through for 5 years, only to be exactly where she (most likely) would have been without therapy. But, until reading the comment left by Future of Hope, I never realized how much I lost.

I'm writing this post so we all can openly discuss the early intervention services. I want new preemie parents, who are desperately searching the internet for information, to know that they have a choice regarding therapy. I don't want to sound as if I am criticizing those in the therapy fields, there is a place for them. But, what I really want to know is how others viewed their therapy time.

33 comments:

Anonymous said...

Helen Harrison commenting:

I feel exactly the same way as "Future of Hope." Our lives, and Ed's, would have been so much better if we hadn't so relentlessly stayed on the therapy treadmill.

On the other hand, teaching Ed to read at age 2 (Glenn Doman's word card therapy) and getting Ed music lessons (starting around age 10) have made his life!

I don't know what therapies/lessons/educational trajectories to tell people to pursue and which to forego. Just, experiment, let your child's interests lead you, and please, don't take any of it too seriously -- something I wasn't willing to listen to back then.

From a thirty-two year perspective with my preemie, FWIW,

Helen

Sarah M. said...

We are currently finding our therapy very beneficial. However, we searched for therapists that helped us - and fired ones that didn't.

A lot of it is being proactive IMO. And remembering that ultimately, while it can help, therapy is not the be all end all.

-Sarah
http://sydney_lou_who.livejournal.com

Anonymous said...

Stacy,

We're some of those parents who refused therapy when Katie was little. At the age of five months the neuro did a CT. They told us, based on that CT, that she had CP and offered us therapy. Now, she was a five month old baby who weighed five pounds. Her adjusted age was about a month. I asked the doc to tell me the benefit of therapy. He couldn't. So, we refused.

We've used OT, PT, and speech/feeding therapy over the years. But I've never regretted refusing the early therapy. It took me so long to feel like I was Katie's mom that I just hated the thought of all those people coming in and out of our lives. I just wanted to love my baby.

With Katie, I developed some understanding for my own mom's guilt. I'm the only biological child of my parents. The others are adopted. My mom felt guilty, I know, for not immediately loving some of my siblings. When my brother (he's Asian and our mom is Caucasian) had his first child my mom jumped up and down with joy because her new granddaughter had my mom's dad's feet.

The physical bond of pregnancy creates and parental responsibility are very important to the development of parental love. I had neither with our sweet Katie. She made it through only about half a normal pregnancy (22 5/7 weeks). I wasn't responsible for her for 14 weeks.

Talk about guilt. The night my son was born was wonderful. I remember, after everyone was gone, I felt this wave of love coming over me. It was a physical feeling just like being hit with a wave on the beach. It took my breath away.

With Katie I felt fear. I was relieved she was alive when I woke up and was glad she was a girl but I didn't get to lay eyes on her for 2 days because of my fever. I spent those days planning her funeral.

When she came home I was her nurse. It must have been a year before I gave myself a break. I never told anyone this but I was scared to death I'd be a horrible mother to her. I didn't feel that warmth or that breathless love. It took me a very long time to realize that I was too exhausted and scared to feel the gooey stuff I craved.

Sometimes the deepest love is part of that makes the mommy pump freezers full of breast milk, wake up every 3 hours for a year, doubt herself, and become a nurse in her own household. In other words, it's the doing and the being responsible. Love is often about fighting for our kids.

That early time was just plain difficult. I felt guilty because I wanted to be a good mommy to this precious child I loved. It's really difficult to be a good parent. Thankfully I learned in time. I do the best I can based on the information I have in hand. So, let's take the guilt and embrace it. Let's realize that it's just a sign of our overwhelming love. In time, we'll discover that some of the decisions we've made weren't the best. That's part of life. We can learn by those mistakes, pick up, and go on to make better decisions.

Today we find ourselves the parents of a beautiful ten year old little girl who just fell asleep next to her service dog with her breathing treatment running. She was immediately asleep because she was exhausted by her horse riding lesson. We chose regular riding lessons rather than therapy because, well, she is ten. Her greatest wish is to have her own horse. This child, who weighed as little as 13 oz, and can't tie her own shoes because of her mild CP, was told tonight that she's one of the best new riding students her teacher has ever had. He said her balance is wonderful. She just learned to ride a bike. This child, this remarkable girl, is my daughter and she is very well loved.

Laura

Anonymous said...

Laura,
We also choose horse riding lessons over hippotherapy and I think it's made all the difference. My daughter is 2 and is an amazing equestrian. Who would have thought--this is a girl who couldnt sit on her own for years but now rides a horse so steady and with pride.
I agree with Helen, follow what your child loves and the you will see the best results.

Kellars Mommy said...

This was something I was pondering on a month or so ago, I even emailed Helen to ask her opinion on therapy and the outcomes with it. I have not taken Kellar out and Stacy I think you hit the nail on the head, it makes me feel better, it makes me feel that I am doing all I can for Kellar. I wonder if I take him out am I going to *hurt* his developement in the end, is it a chance I am willing to take? I honestly still sit here and struggle with this on a daily basis, Kellar enjoys it and it's not hurting anything by going, but I too look back on the last 2 years and feel that I have spent so much time focusing on the what if's, for me I spent a lot of time worrying and wondering, time on the floor with black/white printed paper trying to stimulate him, stretching him, trying to get him to reach for objects w/out tremoring, looking back now I realize that is time that I will never get back and some days I am so saddened that I couldn't just sit and hold my child and go on about our days and not have a worry in my head..ohhhh sorry I'm rambling.

Kyrsten said...

We just went for Joshua's 18 month (actual) check-up, and the ped. again put off any EI: he's doing "too well for that."

Just like this pregnancy, instead of being happy, I'm scared!

In some things he's advanced; in others, he's delayed. I know all children are different; how exactly do you know what to do about your preemie's milestones? On the one hand, I'm worried that I'm doing "wrong" by not insisting on more in-depth evaluations; on the other hand, I totally identify with what Laura said, about wanting to just love him.

I also don't want him to have survivor's guilt, so I bite my tongue when I get the urge to be overprotective. On the other hand, I do struggle still with his brother's death and worry that I'm not doing enough for him.

I wish I could learn to embrace my guilt as a "sign of overwhelming love!"

The Preemie Experiment said...

Helen wrote: "let your child's interests lead you, and please, don't take any of it too seriously -- something I wasn't willing to listen to back then."

This is so true Helen. I wasn't ready to listen to it when Paige was a baby either. I wish I had.

After I wrote my post I remembered one key reason for starting therapy... When the coordinator came to our house she told us that, if we refused therapy, we would have to sign a waiver and "have a good reason." I was terrified that some government agency was going to come knock on our door, assuming we were bad parents. It frightened me.

The Preemie Experiment said...

Laura wrote: "We're some of those parents who refused therapy when Katie was little."

Laura, you were one of the people that was in my mind as I was writing the post. Quite a few years ago (how did our kids grow up so fast?), you were the first one that I had ever met who refused therapy. I remember thinking how much alike Paige and Katie truly were, in respect to their prematurity related issues. Then, as the years went by I heard from so many others and their kids are exactly like ours!

Laura also wrote: "I never told anyone this but I was scared to death I'd be a horrible mother to her. I didn't feel that warmth or that breathless love. It took me a very long time to realize that I was too exhausted and scared to feel the gooey stuff I craved."

I went through a brief period of also not feeling that instant bond that I craved. I needed it. It wasn't there. Now I know so many others who also went through it.

Laura, thank you for sharing those emotions. New preemie parents, who are feeling the same way, will be glad to know that they are normal!

The Preemie Experiment said...

Kellars mommy wrote: "but I too look back on the last 2 years and feel that I have spent so much time focusing on the what if's, for me I spent a lot of time worrying and wondering, time on the floor with black/white printed paper trying to stimulate him, stretching him, trying to get him to reach for objects w/out tremoring, looking back now I realize that is time that I will never get back and some days I am so saddened that I couldn't just sit and hold my child and go on about our days and not have a worry in my head."

When you wrote about "stretching him", oh boy did that bring back a flood of emotions!

Paige's leg muscles are/were so tight that one PT told us that we had to stretch Paige legs, on and off, for 4 hours each day or else she would need tendon release surgery. This was before she could walk.

Jump ahead 9 years and her legs are the same. We never needed the surgery and she still has issues related to her tone.

I am not a doctor. I am not advocating that everyone go pull their child out of therapy. What I do want to get across is that everyone should trust their instincts. If you were to pull him out of therapy for awhile, you could always put him back in if you felt that he was regressing. If you take him out, use the time to play. I wish I had.

I wish you peace with your decision.

The Preemie Experiment said...

Krysten... how is your pregnancy going?

Ayesha said...

What a topic - I could write a book on this...in fact I've considered it. I am a 31-year-old survivor of extreme physical therapy. I was not a preemie, but a full-term baby injured by medical malpractice during my birth. I was diagnosed with spastic quad. CP at 6 months. Although my CP is pretty severe, my mother was obsessed with the idea of me learning to walk. She essentially taught herself how to be a physical therapist. For the first 6 years of my life I had PT/OT for an hour twice a day - in the mornings before school with my mom, and after school either with an OT or PT, or with my mom.

After I started elementary school it went down to an hour a day, under normal circumstances. However, half of our vacations were spent traveling to see some expert in this treatment or that, or going to a rehab center for a week of marathon therapy. At least once a year my mother's PT friend would fly in for a week of teaching her new exercises. When H visited it was 4-5 hours of PT per day. These sessions were documented with photos and video for my mom's reference, and you can see the misery and anger on my face. I was not a very good patient a lot of the time. I think that a part of me felt rejected, that I would never be good enough for my parents if I couldn't walk. Yet somehow I knew, my body knew, that I was not capable of walking as a useful skill in my daily life. I was smart, I was creative...why wasn't that good enough?

My mother was strongly opposed to me getting a power wheelchair for years. She said it would cause me to lose arm strength and make me "more disabled." She would use it as a threat, if I didn't do my therapy I'd HAVE to get one etc. I spent so long barely able to push myself around, unable to keep up with friends, left out of life. Finally, when I was 15, she used that threat again, and I replied, "Fine, I WANT a power chair!" It was one of the best decisions I ever made, and even she came to see that soon after I got it.

Today I have a wheelchair made by a small company that believes significantly disabled children should get power chairs as young as possible. They have successfully placed wheelchairs with children under 2. They have found that it actually encourages these kids to move more, explore their environment, and reduces sensory and perceptual issues. After all, that is the same age at which non-disabled kids learn those skills!

At age 18 I moved to California for college. Getting away from my parents was a major reason for my decision. I also stopped doing physical therapy at that time, and didn't go back to it for 12 years. However, it took my mother's death from cancer a few years later to get me into counseling and ultimately working through all the issues I have from the years of my body not being my own.

Last year I chose to return to physical therapy due to pain and loss of physical abilities. I now go once a week and would like to increase that to 2-3 times as my schedule allows. However, I am not going expecting miracles. I am not giving up the rest of my life in pursuit of someone else's dreams for me. I'm going for my own health, and on my own terms.

Despite my rather hellish experience, I do believe that PT helped me, and I recommend it. However, the key is MODERATION and setting realistic goals. Therapies should not take over your child's life. They should be kept as fun as possible. Music helped me through a lot of it. Hippotherapy was GREAT! Pool therapy is good for some kids too, though it increases my spasticity if the water isn't near hot-tub temperature. Help your kids understand how what they're doing will benefit them in life, using things THEY'D like to do or goals they have, not your goals for them.

Find other activities to be involved in that focus on their strengths. PT/OT will involve a lot of struggles and failures, so make sure they have something else in which they can excel. For me, that was academics, however I also really wanted to be involved in theatre and music. I had some opportunities for that, but my mother also kept me from a lot of it because therapy came first. Therapy should not come last, but it shouldn't come first either, IMO.

Anonymous said...

Helen Harrison to Stacy who said:

"Paige's leg muscles are/were so tight that one PT told us that we had to stretch Paige legs, on and off, for 4 hours each day or else she would need tendon release surgery. This was before she could walk.

Jump ahead 9 years and her legs are the same. We never needed the surgery and she still has issues related to her tone."
***

Studies consistently have shown that PT does not help preemies with development, CP, or with the eventual need for surgery.

I was told candidly by our pediatrician that there was no evidence supporting PT but "we have to give the parents something to do so they can think they are helping."

That a government agency could threaten you about rejecting this unproven (disproven) therapy is frightening.

We took Ed to a really good orthopedic surgeon recently to see if there was anything we should be doing about his muscle tone and limp and whether his gait (at age 32 years) was causing any hip problems. He thought intervention was not worth it.

I asked about PT and he said: "Don't do it, it doesn't change anything."

His PT and OT were helpful in encouraging activities that he liked (slides, etc.)but the
stretching exercises never did anything but make Ed angry. He still had to have heel cord surgery at age 8.

I just hate to parents guilt tripped and threatened over something that doesn't help.

I wish doctors would be candid with us from the very beginning about the evidence (or lack thereof) on PT, OT, and early intervention.

Helen

future of hope said...

TPE wrote : Paige's leg muscles are/were so tight that one PT told us that we had to stretch Paige legs, on and off, for 4 hours each day or else she would need tendon release surgery. This was before she could walk.


Four hours a day of stretching???? That PT could not possibly have been a parent herself, right? Daily stretching has it's place - but that's crazy. It is wrong to put that much pressure and unreasonable guilt on a parent. On the other hand, My son's spasticity has always been an issue. Learning how to stretch, massage, and position him have helped us avoid painful contractures, and has helped him to retain nearly full range of motion.

and Helen Harrison wrote : Studies consistently have shown that PT does not help preemies with development, CP, or with the eventual need for surgery.

As with daily stretching, PT does have it's place. But over the years my opinions of what it's place is have really changed. I cringe when I think back on the hours of tears, and fighting, and bribing. The frustration and overwhelming stress - all because "we had too do X, or he would never be able to do Y" True PT should be short-term, with a specific goal that the CHILD is trying to reach. Otherwise --- take your child swimming, roll around with them in the floor, get them a springy horse for the living room (it does wonders for trunk and head control)! Sign them up for karate or horseback riding - even the most involved child can find a sport that fits them.

future of hope said...

"Those Years Are Gone" - that title says it all, I think. Even more so, these years are still going by. Even though I am aware, now, that time moves too fast, I find myself caught up in the endless loops of IEP's and school battles. Mornings of trying to get an oppinionated, non-morning person, ADHD-ODD spastic quad child up, dressed, medicated, and out the door, UGH! If there were just a way to cut the outside world out of the loop......

Anonymous said...

Wow- I am in total disagreement about this. I bombarded my 25 weeker with way more therapy than was recommended by evaluations.

This is because I believe in neuroplasticity and knew there was an age window for potential best results to occur.

Now she is caught up/ahead in all areas and I still take her to a private gym coach twice weekly just to be sure. (Of course there is a developmental ped. who oversees her development, but I figure individually led gross motor stimulation can't hurt).

Therapy was a godsend for us. Her extreme delays are GONE. I don't understand the attitude, really. Yes you are missing out on baby time. That is your issue. Your child should have as much professional intervention as you can afford for his/her future!

Ayesha- Your mom had her issues too, on the other side of the coin. It should never be at a place where a child continually suffers. That must have been really tough for you.

Anonymous said...

Helen Harrison to Anon:

Randomized controlled studies have repeatedly shown no difference in simlarly delayed preemies exposed, or not exposed, to early intervention and physical therapy. All but the most severely impaired children will develop and outgrow some "delays" with or without therapy and it is only with use of randomization and controls that true effects
can be observed.

We, too, bombarded our son with "therapies" of the same sort preemies get now, from before the time he left the NICU until well into his teens.

YOu may be saying but that was *years* ago. However, there have been no advances in any of these fields in the past 3 decades either because there is no scientific foundation on which to advance.

The therapies (OT, PT, gym, SI, hippotherapy,EI, speech, etc.,etc.) did not correct, or detectably improve, any of our son's major problems.

He did eventually learn to walk (not by doing anything the therapist recommended). The rest of his development (IQ 59 at age 32) *may* have been helped by learning to read at age 2 and having music lessons, but he is still never going to live independently.

Brain plasticity only takes us so far.

I hate to see parents guilt-tripped into spending huge amounts of time, money, and anguish on unproven or disproven treatments.

Helen

Anonymous said...

Our experience with speech, occupational and physical therapy has been very positive (we have one therapy a day). It's given my son increased interaction with people who genuinely care about him - and he adores each therapist. His sessions have a lot of play time so they're enjoyable and fun. I like the fact that he has been learning from other people and not just me and my husband. The therapists have taught me tons of exercises, games, eating tips, etc. to do with my son - which I think has helped me be a better mom. They have also served as excellent sounding boards for me - they listen to my worries, offer tons of resource ideas, introduce us to new tools (eating, books, balance), and offer a level of support that I don't get anywhere else. I don't know how different my son's development would be without the therapies. But in my heart, I feel that I'm giving him the best support available, and I don't ever want to doubt that.

Anonymous said...

Helen Harrison to Anon 8:46:

My son also loved his therapists, as did we.

I think that, despite the non-efficacy of these therapies that has been shown in studies, there may be an unmeasurable benefit to parents and child of having kind professionals suporting and working with you and your child -- as long as you and your child enjoy it.

We did enjoy (much of) it, but I'm not sure I'd do it again knowing what I know now, at least not so seriously and relentlessly.

Helen

Nancy said...

Caitlyn started walking at 18 months old. She had a wide gait and her feet looked horrible. They were pronated and I was convinced she was in pain. When I approached her pediatrician about he, he told me to contact EI and gave me a referral for an orthopedist.

The EI PT came in and said that her feet were in fact pronating (didn't take a professional to see it, it was horrible looking) and encouraged me to go to the orthopedist. She also referred a PT group as a way to help her learn gross motor skills with the appropriate movement patterns.

Off to the orthopedist we went and he recommended shoe inserts. They weren't AFOs or DAFOs and I can't for the life of me remember what they were called.

We registered for the PT group, once a week, 60 minutes a shot.

That group turned out to be a farce. My kid basically sat in a chair and did fine motor tasks and engaged in gross motor tasks for about 15 minutes of the hour. Hardly what I would call a gross motor group. When I brought my issues to the director, I was told that the instructor needed to address all the issues of the 4 children in the group. To be blunt, I wasn't concerned with their issues. I was concerned with Caitlyn's and she needed gross motor activities. They recommended PT one on one.

We did that for about 2 months, with the shoe inserts.

I pulled Caitlyn out after she started crying about having to go there rather than to day care. It just wasn't worth the fight to me.

I took it upon myself to take Caitlyn to an indoor gym once a week for about 2 hours. That to me, was far more beneficial that ANY PT session one on one with the therapist. Not only were the same skills addressed, but she got to do it with about 10 other kids her own age.

We kept the inserts while she learned the correct gross motor patterns, and tossed them. When I asked the pediatrician about it, he said that she pronated because she has flat feet. and she will always have flat feet. And she still has flat feet. He also said that he gave me to referrals basically because I wanted them. But he was clear in stating that he didn't think it would make much of a difference.

All of this is to basically say, that I while think therapy has a purpose and a place, it really needs to be done in moderation. I would not have known what skills to specifically work on with Caitlyn in order to promote correct gross motor patterns had I not consulted with a PT. But once I was armed with that information, I could find activities that I knew Caitlyn would enjoy. and I could enjoy them with her.

I think there are specific therapies that should not be ignored though. For example, if you are talking about a child with some serious vision loss, I think a vision therapist is an essential part of a child's development. Same goes with hearing. I just can't see having a blind child and not incorporating a vision therapist into their development in those early years. That being said, again it needs to be in moderation.

sylvie mom to lilike, locke & anjeni said...

Paige is gorgeous and truly a gift. I focus on Lilike & Lockes gorgeous baby smiles, playing together, dressing her all pretty in bows and dresses as happy memories moments you can't miss out on as what should be remembered. Lilike crawled 7 months to the day because she crawled for and pulled the cats tail with squeals of excitement when the cat jumped in the air. My silly billy baby girl who was so gorgeous. What made gorgeous Locke crawl in an instant at 7 and a half months when he saw in front of him was a yummy baby yoghurt and spoon. When he was 8 months he snatched a cup and drank my yummy milkshake without letting me have it back lol! Food and drink is what makes Locke want to try new things.

Kristie McNealy said...

Cam started PT at 11 months because she basically sat up at 5 mos adjusted, and then refused to even try any other skills. By sat up, I mean if I put her somewhere, she would sit forever. She couldn't get herself in or out of a sitting position. Around the same time, her torticolis also became noticeable, and she also needed PT to fix that and avoid a brace or surgery.

Cam HATED PT. She was very uncooperative, and she pretty much cried every time we tried to get her to do anything. The first two sessions were useful because I got exercises for her neck, and a few ways to coax her to get herself in and out of a sitting position. Beyond that it was terrible, and her therapist ad I mutually agreed to discontinue therapy because of how distressed she was (her neck was better by then).

Stopping therapy was a good decision for us. Based on how she reacted to the therapist, we also decided to delay speech evals as long as it seemed reasonable. Knowing Cam's personality, therapy wouldn't have made a bit of difference. She refuses to do ANYTHING, until she is sure she can really do it. No walking until she could run, no playing on the stairs until she could climb to the top, and no talking until she was ready to talk in 3 word phrases.

I'm glad we listened to her cues, and decided to give her a little time to figure things out. The alternative was too stressful for all of us.

I totally agree with the other comments that you have to go with what your child finds appealing and enjoyable, or it can backfire.

-Kristie

terri w/2 said...

Ahhh. .this post brings back memories. .we also did the EI track - 2x per week of in-center therapies for both of the girls for their first 3 years. This meant packing up both of the girls, twin stroller, etc etc (in our cold midwestern climate) for 3 frickin years. I would not do it again - we too, lost precious baby time.

At the end of EI, one daughter went on to EC services through our local school. My other daughter who was more high-functioning was also referred, but I refused (and they were NOT happy with me.) She, up until that time had only been in EI with pretty significantly disabled children, had a twin who was severely disabled - how in the hell was she supposed to ever function with typically developing children? I placed her in a regular daycare that had a structured playgroup 3 times per week instead. We also started horseback riding for her at that time as well as aquatic therapy for both. I remember (age 3) she came down from upstairs the morning after her first aquatic therapy session and said "I don't feel stiff anymore". .at that point, I really feel we wasted all that time and effort on regular PT/OT, etc through EI.

In addition to the EI services which were VERY intrusive was the social services, which was nothing short of abusive. We were in a household that had massive medical needs, yet social services were virtually non-existent. No home-health care, little respite care services, horrible social workers that had no clue about family dynamics in these situations and were very judgemental.

One very wise mom wrote a long long time ago, that sitting and rocking your baby on the front porch is as much "therapy" as anything offered by professionals.

Kate K. said...

Regarding Helen Harrison’s observation that: “Studies consistently have shown that PT does not help preemies with development, CP, or with the eventual need for surgery.” Later, Helen said: “Randomized controlled studies have repeatedly shown no difference in similarly delayed preemies exposed, or not exposed, to early intervention and physical therapy.”

That makes sense to me when it comes to CP or something needing surgery. But that doesn’t make sense to me in terms of preemie development in general. When you say “does not help,” what were the outcome variables being studied?

Before concluding that therapy does not work, there are some things that I would want to know, such as…
(1) What are the outcome variables? Was length of delay one of them? Or were the outcomes simply whether or not a child hit a milestone regardless of when?
(2) What are the independent variables? What constituted “therapy”? I ask because there is so much variation of what is considered therapy. From reading a lot of posts on various preemie boards, it seems that there is a LOT of variation in how good the therapists are. If therapy hasn’t been consistently defined in the studies, then the measurement error is inevitably going to lead one to fail to reject the null hypothesis and thus perhaps incorrectly conclude that therapy makes no difference.
(3) What were the sample sizes of the studies? Low samples sizes inevitably end up in failing to reject the null hypothesis. I have been surprised in how methodologically suspect a lot of medical studies are. I’m in the social sciences. Prior to the past year during which I have read a lot of medical studies, I would never have guessed that our peer-reviewed studies in our top journals in the social sciences are much more rigorous in many ways than what I’m reading in the medical field. I simply could not get away with trying to publish a study based on the small sample sizes of many medical studies. I’m not convinced that a study based on a small sample size is better than no study at all.
(4) What types of people were likely to let their children enter randomized control studies? I ask because I can honestly say that despite its potential to help medical knowledge, I would never let my son enter a randomized control study. I would never give up that kind of control in his therapeutic regime.
(5) Related to comment 4, what was the “experimental mortality” (cases dropping out) like in the randomized control studies? Cases dropping out of studies is a potential threat to validity of experimental studies.

Our experience has been similar to that of Anonymous (May 23, 2008 8:46 PM). Our son enjoys his therapy, which he views as playtime with different people. Our son is 1 year old (25 weeker). He has PT and OT once a week. He has caught up to his adjusted age on milestones. I can’t say that each therapy session has lead to something new, but I can identify five areas in which I strongly believe that the therapy made a significant contribution to his well-being.
(1) Non-nutritive sucks. Our son has reflux. At 2.5 months adjusted, we were still struggling with feeding him. We pretty much had to feed him around the clock because he wouldn’t take much at one sitting. After 15 minutes with a fantastic OT, his suck pattern changed to nutritive sucks because of some techniques that she showed us for providing jaw support. That meant that our son could consume more in one sitting. This eventually lead to better sleep (for him and us).
(2) Massage therapy. The studies show that babies who are given infant massage put on weight faster and sleep better than babies who are not given massage. At our request, our EI coordinator found an infant massage therapist who did two training sessions with us. After the first session, our son had a huge bottle and slept for 12 hours straight. He generally hasn’t slept that long after that, but his overall sleep patterns did improve greatly; he has consistently slept about 7-9 hours straight at night.
(3) Torticollis identified and resolved. At his 2.5 month adjusted evaluation, the OT said that he had torticollis, which restricted his movement. His skills at that time looked more like a 1 month old than a 2.5 month old. She gave us some stretching exercises, recommended feeding him from both sides, and recommended switching up which side of the crib he was put to bed in and which side of the changing table he was changed (the switching forced him to turn both ways to look into the room). Torticollis had resolved in about 3 weeks. It was a light case; we were happy that it was identified early and addressed.
(4) Identifying a return of reflux. In January, our son was not eating much (10 ozs per day). His pediatrician was taking the "wait and see" approach even though our son had lost 11 ozs in 10 days. The Urgent Care doctor wouldn't do anything until Henry had lost 10% of his body weight. I wasn't interested in waiting for a FTT diagnosis before taking action. Our son's OT methodically went through the reasons why he wasn't eating. She asked about his Prevacid dosage. It turned out that he had been on the some dose since he was 6 lbs, even though he was 16 lbs. The dose was too light. We got the doctor to increase the dose (doubled it), and his reflux was minimized and he started eating. Thank goodness for his OT. She helped him, when the doctors were willing to turn a blind eye.
(5) Physical therapy. The EI program initially couldn’t find a PT who was willing to work in our area. So we got one through our insurance. She became his PT right before he could sit up by himself (around 6.5 months adjusted). Basically, she seemed to bring out new things in him each week. I think that we were holding him back a little in terms of what he could do. We didn’t challenge him much; his PT did. And he has blossomed. Initially, I think that our expectations were too low, and we were consequently a little too cautious with him. I suspect that she would say that he was going to meet his milestones at some point, but that the therapy helped facilitate the process, so that he has been meeting those milestones sooner than later. He is a happier child because of it.

It may be the case that therapy has a less demonstrable impact on children of parents who are active with them anyway. I suspect that the readers of this blog are atypical parents in that they are extremely involved in the care of their children. There are, of course, a lot of parents who are not engaged with their children, and such parenting styles (detached) have negative consequences for the children (which hopefully some intervention can minimize and perhaps try to get the parents engaged). My son’s EI coordinator says that of the 12 families on her case load, she suspects that only 3 of those 12 families have parents who actively work with their kids when the therapists are not around. Very sad. I have read in some preemie books that overall, preemies are more likely to be abused and neglected by their parents than FT babies on average. I hope that EI therapists can, in which circumstances, minimize harm that is being done and perhaps try to reorient parents parenting styles so that greater attachment for the children is created and the therapists can give the parents some skills on handling their kids.

Anonymous said...

Helen Harrison to Kate K:

I am referring to the Infant Health and Development Program in which 874 low birth weight children were randomized either to receive or not receive intensive early intervention from birth to age 3. 336 of the children got the intervention at 8 sites around the US at a cost per child per year of $15,146.00.

The rest of the children served as controls. SES (which covered the range) was similar in the two groups.

These children and their parents received massive intervention on a daily basis in a manner that was (and still is) state of the art. Methodology was standardized for every site.

This project involved the most highly esteemed advocates and practitioners of premature infant follow-up and early intervention in the country. Its results were to be considered definitive, and hopes were high.

However,the final results, measured when the children reached age 8, were that among the <2000 g birthweight children there were no differences in IQs (88 was the mean IQ of the intervention group -- 89 was the mean IQ of the controls). There were no differences in special ed needs, grade retention, or behavior problems or in health, or any outcome measured. (McCarton et al. JAMA 1997;277:126-132.)

Helen

Anonymous said...

Ah, perhaps the early intervention and therapies did not result in IQ differences. They may not have been the right kind of therapies. Children may not learn to swim or play soccer or dance or play an instrument or gain other skills that can bring them such joys if they do not learn the particulars. Even "normal" kids don't learn things without being exposed to them. I don't swim, don't dance well, don't do a lot of things because I never learned to do them. So for your children who may need extra help, I see no harm and much good in teaching certain skills and activities. When the therapies become so awful that the children are unhappy and you feel wretched, it becomes time to step back.

I remember in reading Pearl Buck's account about her special child how she saw her the child's hand, body, self shaking in effort to write her name. Was it that important for her to learn to write? She decided it was not. For each of us there is that balance. Some things we must pursue--breathing therapies, swallowing, eating, all skills that may make a big difference. But when the "skill" leads to more unhappiness, it's a different story.

The big problem with insisting that these therapies are so useless is the loss of funding and people interested in working with children who need some extra work. Perhaps a redirection of efforts is necessary.

Anonymous said...

Helen Harrison to Anon who said:

"The big problem with insisting that these therapies are so useless is the loss of funding and people interested in working with children who need some extra work. Perhaps a redirection of efforts is necessary."

***

Perhaps, some positive results that can be measured and reproduced are what is necessary -- at least if we are trying to get the taxpayers to foot the bill.

Helen

Anonymous said...

Laura to Katie K.

As parents we have the responsibility to do what we think is best for our children based upon the information we have. We don't have to justify or explain our actions to anyone else.

As a parent who decided against therapy, I will say that we used targeted therapy from NICU on. Our Katie received feeding therapy while in the NCIU. This allowed her to nurse. I participated in a breast feeding study, which provided me with a pump. I pumped 8 times a day and had a freezer full of milk by the time she came home at 14 weeks.

Sue, our feeding therapist, taught Katie how to suck and how to nurse. This remarkable little girl was born at 22 5/7 weeks and was hospitalized for 14 weeks. Once home, I never gave her a bottle again. This therapy amounted to a couple of sessions where I learned how to position her. She nursed until she was 22 months old.

She had feeding therapy in the NICU and then again as a toddler. She had a Nissen at age 2 due to her GERD and its aggravation of her respiratory issues.

Katie loved going to "Sue's House," the Easter Seal's building. It was a fun place to go. On her 10th birthday we visited Sue. She doesn't remember much of therapy and such but she does remember her friend Sue and all the fun they had. Sue helped her read, get rid of her lisps, and eat.

For us, most of the therapy we've used has been less than helpful. For us, short term targeted therapy has been the most helpful.

Laura

Anonymous said...

TPD Here. I was not very impressed with EI services (ages 0 to 3) and would not say there was any specific benefit to them. I see PT, OT, and ST as "soft" sciences, and I would participate to the extent it made common sense to me. I spent a lot of time wondering if I made the right decision to fire this therapist or that, and that was wasted time looking back. Also I scrutinized everything about my son, which made it hard to just enjoy his babyhood.

Results are hard to measure, and I suspect that success is based primarily on positive human interaction (ie, parent, child, and therapist all get along and enjoy the time spent together, so whatever they are doing during that time is going to have a positive impact).

As children get older and can more fully understand and participate in therapies (and articulate what bothers them) I think there is the potential for targeting specific issues and making better decisions about what to do, for how long, how often, etc.

Right now I think there is a general focus on early identification of issues and intervention through intensive remediation efforts - this can be an effective governmental response to a problem, to ensure over-treating instead of letting kids slip through the cracks.

Parents don't have to take the same approach, though, on the level of the family and individual - parents can take into consideration other factors when deciding how much is too much, and when a particular "remediation" may do more harm than good.

Anonymous said...

Feeding/speech therapy had a place for us, since Vic had an NG till about 15 months. The combination of the ped writing an order for the speech/feeding therapist to initiate oral exercises and then feeding WITHOUT a swallow study (our ped did not believe in their accuracy); and the slow, 2-year-long introduction of oral feeding, got us to a place where Vic could 1)suck from a bottle and live on Pediasure (for nearly 7 years), and consume a limited diet of yogurt and applesauce for about 4 years.

Feeding therapy ended at about 4 years, but speech therapy continues today.

Vic has poor oral/motor skills to this day--he is 13. This past weekend, he choked repeatedly on pancakes, till I had to stop him eating his restaurant pancakes. (At home, Bill makes Sweedish pancakes that "melt in your mouth," but restaurant pancakes are heavier . . . )

Vic is still learning how to take a bite of a sandwich, using his front teeth to sever the appropriate-sized bite, and then move the bolus to his back teeth for chewing. He inevitably chews insufficiently, and his eyes go wide as he swallows a BIG, partly chewed bolus with a gulp. He is constantly at high risk for choking, and in his IEP, we routinely include supervised eating.

So, I would have to say that Vic has needed and benefitted from feeding therapies, especially at age 15 mos-4 years. I would have stopped feeding him out of fear of him choking--if the ped had not written an ORDER for the speech therapist to persist.

At age 10, Vic started Tae Kwon Do, and I immediately felt better about the young male role models who coached Vic through the moves, as opposed to physical therapists who moved his legs and feet for him, and put him through balancing "techniques" that were not related to a sought-after goal, such as in Tae Kwon Do, where you WANT to learn the form or the kick or the block . . .
The young men at Tae Kwon Do, called "juniors," have great instincts for coaching younger kids through their initial learning of the moves and poses, blocks, strikes, punches and kicks.

Furthermore, in Tae Kwon Do, Vic is part of a group of neurotypical kids, all motivated to learn the skills. Whereas in PT and OT, he is a child with a disability or two. Big difference.

Chris and Vic

Anonymous said...

Stacey,

The pregnancy is going OK, though I'm feeling sicker than I did with the boys... many, many people are saying it must be a girl (?!). I'm just trying not to overanalyze every nauseous feeling!

Last week was very emotional, again. I feel like I'm afraid to "bond" with the baby.

-----------------------------------
Add to this our dealings with the federal government: apparently, we had "too much" income last year and shouldn't have received disability for Joshua (the cut-off is savings, income, 'salable goods' of more than $2000.... who the heck can raise a family on $2000. a month in the Northern NJ area?! -- and we are renters! --but I digress). No one told us these guidelines last year, and we gave them all the info. they'd requested at that time... But we just received a bill for nearly $6000. (payable by June 18th).

I know this is off-topic, but has anyone been in a similar situation?

Kyrsten said...

Sorry, that last post was Kyrsten.

The Preemie Experiment said...

I will add my .02 to others comments in a few days. I'm wildly busy but wanted to answer Kyrsten right away.

We had the same issue with SSI. It was enough to almost cause me to run and jump off of a bridge. We got a snotty letter telling us that my husband made too much and we owed it all back.

Kyrsten... I fought it and won. I had to show receipts for everything that I bought for Paige. I then made a list of all of our bills, including medical bills, pharmacy bills and even dental bills (and estimates for upcoming dental work). I appealed to them, showing that it was not only impossible to pay back the money, but it would be a financial hardship.

It was 9 years ago so the details are fuzzy, but we did win. It took months to settle it.

Call them then let me know what happens. If you still need suggestions, I'll make a post out of it so others can weigh in.

As far as bonding with the baby... I didn't bond with Tyler until the last few weeks of my pregnancy. It's normal honey. Hang in there.

Anonymous said...

I got ringworm when I worked at a daycare it spread on me very quickly . I had like four. I went to my general Dr and she wasn't sure so she gave me an antibacterial soap so then I went to a dermatologist. The picture in the medical books did not match what I had. First dermatologist I went to said it was dermatitis and told me to shower less when I only showered once a day, twice a day occasionally. She said she couldn't scrape it because if it was ringworm it wouldn't show up because of the antibacterial soap. She gave me a cream. I went to a second dermatologist and they scraped it. Sure enough it was ring worm and gave me a cream. Which was the same cream the first dermatologist gave me! She gave me an antifungal cream but said it wasn't ring worm. Unbelievable! She got a nice phone call!

So fast forward six years later I got some patches that looked like I had before and itched and I panicked because ring worm is so hard to get rid of. I went to the same dermatologist I went to the second time. He scraped it and this time is was the dermatitis. I will say they both itched like crazy but I remember the ring worm burned and it got much bigger quicker whereas the eczema stays smaller in size. I hope this helps other people as it is very difficult to tell sometimes!