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Old 03-20-2004, 10:22 AM
 
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My almost year-old girl has hypotonia and eating problems. We've done a lot of testing, but found nothing. I'm looking for other parents of kids with similar contiditions.

If your child has hypotonia, did he/she crawl or walk? If so, when. Is your child diagnosed?

What's the prognosis?

What other symptoms does he/she have?

Where do you go for information on your child's condition?

A bit about happy, sweet Maylon: Born three weeks early, but 6 lbs, 9 oz. Never breastfed well. Didn't eat. Coudn't suck well. Didn't gain weight. Didn't hold head up at 4 months. Got feeding tube. But, still didn't grow well. Sat at five months. At almost a year, just starting to bear weight on her legs. Doesn't crawl. Doctors are baffled.
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Old 03-22-2004, 12:37 PM
 
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My ds has low muscle tone. He has down syndrome. He was delayed in crawling and walking but no so much as yours. He sat by 6-7mos and crawled by 12 mos. Walking unassisted at 21mos.

Was your child vaxed? at birth with hep B ? Have you read all about adverse reactions? Often this is an area dr's do not look into....................


Hoping you find answers. Keep searching.


El
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Old 03-22-2004, 02:27 PM
 
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David has low muscle tone.. its got worse over the years though.. he used to crawl & sit up & feed pretty well.. he couldnt BF .. but did ok with a bottle

about age one he wasdiagnosed with hearing impairment

they originally thought he had congential Cytomeglovirus
http://deafness.about.com/cs/featurescauses/a/cmv.htm


then when he started getting worse they said it wasent that..CMV wouldnt have got worse
he saw a genetist & was diagnoised with Perioxsomal disorder a few months later

www.pacifier.com/~mstephe/peroxisome.htm


I was also told a lack of oxygen at birth could cause Hypotonia
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Old 03-22-2004, 02:51 PM
 
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My dd has low muscle tone.She crawled at 11 months,walked at 19 months.She is now 6 1/2 and she falls a lot.But she loves running and climbing but can't do monkey bars,or anything involving coordination.She is a very active kiddo though.No prognosis other then low muscle tone.Occupational therapy is really great for this.I will say that becasue of the low muscle tone my dd had serious speech delay and now she still can not pronounce words properly.Her tongue lacks the muscle to work her words right.But we are working on it!Speech therapy is a huge help.Look into the therapies though and good luck!

Oh and to answer the other questions.She still eats only soft things but sometimes likes raw broccoli over cooked broccoli.I went to my local school and requested testing for their early intervention toddler program.They provide free OT and Speech therapy.I also applied for SSI(through social security)for the disability and free medical.My pediatrician would not help.She just kept saying she would grow out of it.So i bypassed her with the other services.The school was a great resource.
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Old 03-22-2004, 06:03 PM
 
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My now-7 yr old was a mystery for quite a while (to some doctors, she still is). Full-term, born breech (vaginally), had a floppy feeling to her, especially her legs, that I didn't notice with my other kids. She also had contractures of her hips, knees, and ankles, and had casts for a couple of months to help straighten her knees and ankles. She nursed, but grew very slowly (she's still really tiny), and had an odd sucking pattern---6 or 7 sucks in a row, then a pause of several seconds while she swallowed than caught her breath. She started solids late, talked late, and hit all of her milestones late. I was always most concerned about her legs; they were like little noodles! She started bearing some weight on them at 15 months or so, but couldn't stand up.

We finally had an MRI at about 17 months, after having done several blood tests which came back normal. Turns out that my daughter has a spinal cord abnormality which would be classified as a neural tube defect. It formed very early in gestation, and apparently affected not only her legs, but also her arms, trunk, and neck. She's had PT and OT since she was about 4-6 months old, and had ST for a few years, too.

It's very stressful to know that something is different about your child, but to not know exactly what it is. Even if you have a "bad" diagnosis, you at least have a bit of info that can help you figure out what to do and what the future may hold! I hope you can get some answers about your sweet little girl soon. One place you can go to connect with lots of other parents of kids with hypotonia is parentsplace.com. There is a very active "Hypotonia" board there, and you may be able to find some other kids that sound like your daughter. Good luck to you!

Joni
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Old 03-23-2004, 04:39 AM
 
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Hi! I worked with a 3yo girl who had severe hypotonia ( I was her one on one special ed aide). She couldn't stand or bear weight on her legs at all; she was in lots of PT, which was helping, she made many improvements while I was working with her. She did eat okay, but not great. She also had some sensory issues.

My point is; I worked at an AMAZING public school; the resources there were incredible! They had an early childhood program for special needs children, ( where I worked) and it was amazing. I would look into finding some specialists (physical therapists and such) to help you out; and check your local school districts, they might have a program that she can or will qualify for.

Kristi

"Have faith in yourself and in the direction you have chosen." Ralph Marston

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Old 12-08-2008, 09:42 PM
 
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this is my first time to this website but i am trying to hit them all cause i have been in your shoes! my daughter had all the same symptome.. she didnt start walking til 2 weeks b4 her 2nd birthday! she started gaining weight at a scary pace and i was getting the run aroung cause no one knew what to do..
Please please please have your child tested for a rare syndrome called "Prader Willi Syndrome" my daughter was diagnosed about 4 months ago and it all makes sense now- her only symptom now is her weight but at least now i know why she was the way she was! you will have to ask for the test and alot of pediatricians dont know what it is! for your child sake and your peace of mind get her tested!
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Old 12-08-2008, 11:29 PM
 
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Have you had an MRI to check for brain injury? Juju has a brain injury/cerebral palsy. At one year he can bear some weight on his legs with assistance, he rolls only from his side, he does not sit or consistantly hold his head up, he does not play with toys with his hands. But there is a wide range of ability for kids with CP. He did not eat well, but we never got to the point of inserting a tube. Now he takes a real bottle - still eats less than normal, but is improving.
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Old 12-08-2008, 11:30 PM
 
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Hi, Kyleigh11, and WELCOME!!!

You responded to such an old thread...I only recognize a few of the screen names

I don't know if there are any other Prader Willi kiddos here, but you should start a new thread, introduce yourself, and see if any come out of the wood works.

My son has a different genetic syndrome, the link is in my signature. His hypotonia is pretty mild, he walked at 16 months, and now at 21 months is trying to run and seems to get the concept of jumping (hopping) but can't quite figure it out yet It's funny to watch him try, though! He has a whole host of other issues, but really is doing very well right now.

It's nice to "meet" you

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 12-09-2008, 02:46 AM
 
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I've been having these same questions about my son, Michael. Here is our experience.

Michael and his twin were born 2 months premature. They were induced due to severe preeclampsia.

As for the cause of his hypotonia, I don't know. I asked his pediatrician if we should have testing to find out why he had hypotonia. He said he thought we would do a lot of expensive tests, but would still be doing the same treatment: lots of therapy. He didn't think it would reveal much. I know other people have pursued metabolic studies, etc. I don't know if its prudent/necessary for us or not. I do know Michael is very social, easy-going, and cognitively sharp. He doesn't seem to have any health problems that aren't attributable to hypotonia. I'd be interested in people's thoughts on this.

Continuing with the "cause" question, preeclampsia does cause oxygen to shut off to the babies because of vascular spasms. That's why babies die so quickly with it. I'd never considered if oxygen deprivation was a cause of his hypotonia. $We had an MRI because he had intermittent tremors, which turned out to be benign genetic tremors. The MRI showed no abnormalities. He did have some spasticity in his lower extremities when little. I asked the neurologist if he had cerebral palsy. She told me it was "just a word" and wouldn't affect what we did: lots of therapy. She said they wouldn't diagnosis CP at that age. (He was like 4 months adjusted).

Now I'll turn to milestones. Michael laid plastered to the ground, unable to lift his hands to midline at 5 1/2 months chronological age. He couldn't lift his head.

I threw the book at this little boy, therapy-wise. I put his in OT twice a week, one through EI and one privately. I had him in PT. We did aquatherapy 2x/week. I got him into hippotherapy. I CONSTANTLY worked with him and tried to incorporate his therapies into our life. For instance, I would encourage him to pull up on me to be held, while being careful not to be cruel or let him get overly frustrated.

With all this, my little boy ended up looking like a miracle child. He walked at the equivalent of 12 months. At slightly over age 3, he jumped, which is a huge accomplishment for a hypotonic kid. He runs, but his gait is immature. He doesn't really lift his knees. He can balance in a flamingo pose on one leg with arms extended for a second. He can go downstairs, but not in a reciprocal pattern.

Feeding has been a huge issue for us. He couldn't latch on until he was 12 weeks old. His suck was ineffective. He ended up a huge chunk below the growth chart. After a zillion consultations, including feeding evaluations, a feeding specialist observed that he would only eat soft fruits and soft vegetables because he was swallowing them whole. One or two bites of unchewed food and he was full. They also included the hypotonia left him too exhausted to eat and chew. We went through MONTHS of him crying from hunger but being too exhausted to eat. It was so painful.

We still have lots of feeding issues, though I've finally got his little toe on the chart, as opposed to a shocking chunk below the chart. I never in a million years would have thought I, a health conscious, vegetarian, would be feeding my child McDonald's double cheeseburgers and french fries just to get as many calories and fat into him as possible. He seems to have little to no desire to eat. I primarily give him strawberry milk, kefir, yogurt, chocolate milk, juice, in short, caloric liquids.

EI ended and with it our luxurious aquatherapy 2x/week. I took him for a PT evaluation. She is proposing 6 months of PT and then reevaluate whether to continue, considering if he is simply being frustrated and cannot do much better or is making progress.

I would love to know how this looks for children as they get older. My sense is that Michael has done fantastically for where he started, but he will continue to be affected. He is TINY for his age. He hasn't needed speech therapy for language issues, but it seems like his speech is harder to understand. I wonder if the decrease in services his making his speech harder to understand. I'm curious what potty learning looks like for these children. My son is 40 months and hasn't shown a hint of any readiness to potty learn.
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Old 12-09-2008, 05:04 AM
 
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Quote:
Originally Posted by Purple Cat View Post
I've been having these same questions about my son, Michael. Here is our experience.

Michael and his twin were born 2 months premature. They were induced due to severe preeclampsia.

As for the cause of his hypotonia, I don't know. I asked his pediatrician if we should have testing to find out why he had hypotonia. He said he thought we would do a lot of expensive tests, but would still be doing the same treatment: lots of therapy. He didn't think it would reveal much. I know other people have pursued metabolic studies, etc. I don't know if its prudent/necessary for us or not. I do know Michael is very social, easy-going, and cognitively sharp. He doesn't seem to have any health problems that aren't attributable to hypotonia. I'd be interested in people's thoughts on this.

Continuing with the "cause" question, preeclampsia does cause oxygen to shut off to the babies because of vascular spasms. That's why babies die so quickly with it. I'd never considered if oxygen deprivation was a cause of his hypotonia. $We had an MRI because he had intermittent tremors, which turned out to be benign genetic tremors. The MRI showed no abnormalities. He did have some spasticity in his lower extremities when little. I asked the neurologist if he had cerebral palsy. She told me it was "just a word" and wouldn't affect what we did: lots of therapy. She said they wouldn't diagnosis CP at that age. (He was like 4 months adjusted).

Now I'll turn to milestones. Michael laid plastered to the ground, unable to lift his hands to midline at 5 1/2 months chronological age. He couldn't lift his head.

I threw the book at this little boy, therapy-wise. I put his in OT twice a week, one through EI and one privately. I had him in PT. We did aquatherapy 2x/week. I got him into hippotherapy. I CONSTANTLY worked with him and tried to incorporate his therapies into our life. For instance, I would encourage him to pull up on me to be held, while being careful not to be cruel or let him get overly frustrated.

With all this, my little boy ended up looking like a miracle child. He walked at the equivalent of 12 months. At slightly over age 3, he jumped, which is a huge accomplishment for a hypotonic kid. He runs, but his gait is immature. He doesn't really lift his knees. He can balance in a flamingo pose on one leg with arms extended for a second. He can go downstairs, but not in a reciprocal pattern.

Feeding has been a huge issue for us. He couldn't latch on until he was 12 weeks old. His suck was ineffective. He ended up a huge chunk below the growth chart. After a zillion consultations, including feeding evaluations, a feeding specialist observed that he would only eat soft fruits and soft vegetables because he was swallowing them whole. One or two bites of unchewed food and he was full. They also included the hypotonia left him too exhausted to eat and chew. We went through MONTHS of him crying from hunger but being too exhausted to eat. It was so painful.

We still have lots of feeding issues, though I've finally got his little toe on the chart, as opposed to a shocking chunk below the chart. I never in a million years would have thought I, a health conscious, vegetarian, would be feeding my child McDonald's double cheeseburgers and french fries just to get as many calories and fat into him as possible. He seems to have little to no desire to eat. I primarily give him strawberry milk, kefir, yogurt, chocolate milk, juice, in short, caloric liquids.

EI ended and with it our luxurious aquatherapy 2x/week. I took him for a PT evaluation. She is proposing 6 months of PT and then reevaluate whether to continue, considering if he is simply being frustrated and cannot do much better or is making progress.

I would love to know how this looks for children as they get older. My sense is that Michael has done fantastically for where he started, but he will continue to be affected. He is TINY for his age. He hasn't needed speech therapy for language issues, but it seems like his speech is harder to understand. I wonder if the decrease in services his making his speech harder to understand. I'm curious what potty learning looks like for these children. My son is 40 months and hasn't shown a hint of any readiness to potty learn.
This post SCREAMS fatty oxidation defect/mito, the treatment is an ultra lowfat/high carb diet (with various special vitamins like Riboflavin or MCT oil depending on which variety they have but all are lowfat/high carb). We finally figured out my 2 yr olds issue at 14 mo when she still wasn't able to sit unassisted (didn't suck until her 1st birthday either). Once we started the diet she went from barely sitting to RUNNING in 5 weeks. Anyway, the part that really screams to me is the fact that fetus's who have FOD's can causes severe pre-e/hellp syndrome in the mother. I didn't get it with my 2 yr old but I did with my 8 yr old who's had a lot of issues as well but none to the extent of the 2 yr olds. Were hoping to test her for the same defect as well. The computer flagged my 2 yr old as having LCHAD when she was 6 months old and no one checked it out becasue the numbers weren't that off but no one ever told me about it and just said "she miiiight have an metabolic problem, but were not sure". Her metabolic problem (final dx was SCHADD) causes death when untreated and is usually detected post mortom. I had to push for the testing after figuring out her low tone was directly tied to diet and proved it with pictures of her face where its very clear. I'd hate to think what would have happened if we didn't know and she went into a crisis... if you haven't had her tested for fatty oxidation defects I urge you to do so. You can get more info at http://www.fodsupport.org/

and yes I know, go study! I just wrote 2 papers, I'm taking a food break before my head implodes from to much thinking

Seriously?
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Old 12-10-2008, 12:22 AM
 
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Andrew is mildly hypotonic--late to hold his head up, late to roll, hit most of his next milestones (sitting/walking/running) on the late side of normal with heavy PT and hippotherapy. He finally was able to jump at age 4 after we started medication for mitochondrial disorder. We found he had a metabolic disorder affecting fat metabolism at 3.5. He's doing much better with treatment.
But he did have other issues--growth, energy (fatigue), reflux, constipation/vomitting/diarrhea and developmental delay. He stopped eating trying to avoid fat we believe.
http://www.mothering.com/discussions...d.php?t=734501 My link on signs of metabolic disorders.

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Old 12-10-2008, 02:41 AM
 
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My son has hypotonia, but it is mild enough that it was not apparent, except with 20/20 hindsight.

He actually had motor milestones that were ahead: he crawled at 7 months and walked at 10 months. But he had serious breastfeeding issues that I can now clearly see were the hypotonia (he did eventually figure out how to nurse.)

The main physical symptom we could see was fatigue. He was constantly complaining of being tired no matter how much sleep he got. And he never got enough sleep!

He has Asperger Syndrome, which was diagnosed after the social delays/difficulties became apparent.

His fatigue has improved tremendously through the use of various supplements/biomedical treatments suggested by our doctor. He may have a mitochondrial component to his AS.
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Old 01-01-2014, 05:49 AM
 
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Old 01-01-2014, 05:50 AM
 
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Old 01-01-2014, 06:53 AM
 
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Our
Our little grandbaby was three months early - had 3 months in the NICU- mostly because of poor feeding . He also had a level one and two brain bleed. He is now a year old and his weight and height has steadily gone in a downward direction to off the charts. ( Though his head is in the 50%?) eating is a big chore - Eats so little. also on Prilosec for acid reflux. been on it since 2 months after birth. We know he gets dry mouth from it as he loves water. Took him off of it but feeding got worse.
He is usually happy laughs and smiles all the time, waves hi and bye.
He is also way behind with large motor development. He can finally sit but he isn't very active while sitting( playing with toys etc.) and has'nt started to crawl or walk. His mode of transportation is rolling all around the room. Finn gets frustrated because he can't get at toys if they move away from him - cant get to them. He gets PT and she said he has low muscle tone. He doesn't seem floppy at all rather his legs at times are stiff - his fine motor seems to be OK as I have observed him passing a small string back and forth between his pointer fingers and thumbs.
Doctors say PT 5 times a day and feed feed him whatever you can. He had breast milk for his first six months sometimes from the breast sometimes the bottle. Finn also had his tongue clipped at 9 months - suck expert said he was only using part of his tongue - didn't make any difference. greensad.gif though my husband said he could feel the difference when he would stick his finger in his mouth. ,
My daughter goes to the pediatric GI guy tomorrow - just wondering if any of you awesome mothers fighting the good fights for your little ones have any input or ideas.
Thanks - it is just so frustrating - worry worry
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Old 01-01-2014, 06:23 PM
 
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Our son is 10 and also has/had the same things you mentioned. We told that he wouldn't walk or talk. We still don't have much for a diagnosis at age 10 but he is walking/running and talking rather well. We went to 7 years of weekly OT/PT/speech. We made sure that our therapists were very knowledgeable and up on the latest information in their field. It was a really good investment of time.
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Old 01-02-2014, 10:06 AM
 
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Thanks so much for your story. Did your baby also have problems eating?
Thanks
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Old 01-04-2014, 05:51 PM
 
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Yes he did have trouble with Now he loves to eat! We saw a "feeding team" that helped us with that for many years. Probably until about age 7.
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Old 01-05-2014, 08:05 PM
 
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Wow what is it that these little guys have such late slow development? Any ideas from all these experts as to why? But thank you for sharing as it gives us hope. Our grandson is in Austin, Tx. I hope they have good experts. Need a strong constitution to stay tough and do what needs to be done!
Thanks again.
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