Hypotonia in children - Page 3 - Mothering Forums

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#61 of 88 Old 12-28-2008, 02:07 AM
 
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Welcome!
Every state is different but that is not at all consistent with early intervention in states I know of.
http://www.cms-kids.com/earlysteps/ I found this link which leads me to believe it isn't true in Florida either. Perhaps call the 800 number on that site and ask for clarification. Perhaps they bill insurance if the child is insured but it sounds to me as if they do provide services.

Thanks sbgrace ! I'll definitely call them on Monday.
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#62 of 88 Old 12-28-2008, 05:00 PM
 
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I'm in Florida and I called them 3 days ago, and they told me we can only qualify if DD doesn't have private insurance (she does, through my DH). What is your experience?
??? Gosh, I don't think this is right at all, unless it varies by county. I'm in FL and we have private insurance and DS has been in early intervention home therapy for about 4-5 months now. It's all free.

I'll give a little info about DS here in case anyone is interested. He was dx as hypotonic around 4 months after serious nursing issues/borderline failure to thrive. He is also hyperflexible. He started gaining tons of weight after starting solids and increasing donor milk and formula around 6 months, and soon after started making huge strides with his motor skills. At his last visit with the PT, she said he is now age-appropriate. At 6 months he could not sit up *in the Bumbo*; at almost 11 months he is sitting, kneeling, crawling, pulling to stand, and walking with a walker toy. We had numerous tests run, all of which were normal. Basically, no one has the slightest clue what the deal is, and he is being monitored, but I am here to say that great improvement *is* possible.

grateful mother to DD, 1/04, and DS, 2/08

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#63 of 88 Old 12-28-2008, 07:30 PM
 
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??? Gosh, I don't think this is right at all, unless it varies by county. I'm in FL and we have private insurance and DS has been in early intervention home therapy for about 4-5 months now. It's all free.

I'll give a little info about DS here in case anyone is interested. He was dx as hypotonic around 4 months after serious nursing issues/borderline failure to thrive. He is also hyperflexible. He started gaining tons of weight after starting solids and increasing donor milk and formula around 6 months, and soon after started making huge strides with his motor skills. At his last visit with the PT, she said he is now age-appropriate. At 6 months he could not sit up *in the Bumbo*; at almost 11 months he is sitting, kneeling, crawling, pulling to stand, and walking with a walker toy. We had numerous tests run, all of which were normal. Basically, no one has the slightest clue what the deal is, and he is being monitored, but I am here to say that great improvement *is* possible.
Thanks so much for your info. Maybe I just spoke to someone not well informed. I'll try them again until I get a satisfactory answer. What county are you in? I'm in Broward.
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#64 of 88 Old 01-08-2009, 12:55 AM
 
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I called EI again and they told me to call Child Find. Child Find took my info and said they'd send a referral to EI who will contact me withing 10 days (you gotta love bureaucracy, LOL). SO now I wait for their call. Insurance was not an issue, just as everyone here mentioned. I must have talked to someone not informed or not willing to help me.

Thanks for all the help.
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#65 of 88 Old 01-08-2009, 02:38 AM
 
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Oh, good! I'm glad you're on the right track now.
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#66 of 88 Old 06-02-2009, 06:55 PM
 
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Not sure if this thread is still being monitored but I saw someone say there's a good metabolic specialist in Houston. I was wondering who it is since my son is 12 months and has hypotonia but no diagnosis. I want to see if he has a fatty acid oxidation disorder but am tired of wasting time and would like to go to the best.

Thanks,
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#67 of 88 Old 06-02-2009, 07:09 PM
 
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#68 of 88 Old 06-05-2009, 06:02 PM
 
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My son has been hypotonic since birth - he had poor suck, inability to feed which led to an NG tube. The final diagnosis was Prader-Willi Syndrome which many kiddos with hypotonia would (and should) be tested for. By age 4, however, other classic PWS signs would likely present themselves such as extreme interest in food and possibly constant eating/ food seeking.

Motor planning issues def. go hand in hand with hypotonia - we have to physically move his body to show him how to do something and after a few times he seems to create that neuro-pathway to the brain and remembers how to do it. I understand that Hypotonia is either brain based or muscle based.

Sensory Processing Disorder is also common - hypotonic kids can often be sensory seekers . DS loves bear hugs, rough play (only with those he feels safe) and can occasionally have issues with picking (nose, scabs, etc).

We also have to watch for scoliosis which I think is common due to the low muscle tone.

I think testing is important - there are many disorders which have specfic treatments and guidelines. That said, it can be a long road to finding a diagnosis. Just thought I would throw out the Prader-Willi possibility for younger babies and list the issues we have dealt with in regards to hypotonia.

We have experimented with supplements -specifically CoQ 10 and L-Carnitine that are said to help with sleepiness and muscles. They did not work for us a while back but I am thinking of starting L-Carnitine again. Anyone else try these ones? We also do fish oil.
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#69 of 88 Old 06-05-2009, 07:16 PM
 
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My daughter developed hyptonia at 4 months old. It was a symptom of her condition, Rett Syndrome.

A few years ago, I had quickly written down her "Hypotonia Story" on a website.http://www.angelfire.com/pa5/littleones/story.html
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#70 of 88 Old 06-27-2009, 12:00 AM
 
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I know this is an older thread, but I am very interested in your mention of Prader-Willi Syndrome. I have read a bit about it during my excessive googling of hypotonia.

My dd is 15 months and has been described as "a little floppy" by her ped. I pushed him to refer us for OT/PT and he reluctantly did. Her PT says that he wishes he would have seen her months ago, and that she has low tone.

How did you find out that it was Prader-Willi syndrome. What sort of specialist diagnosed it? What sort of testing was involved?

Initially I thought perhaps CP because she was a 35 week preemie, I had preeclampsia, her growth slowed a lot in the last week, and I had a terribly abrupt labour. So to me that is what made sense (with my "medical degree" and all, lol.) But both ped and PT have said they are "pretty sure it's not CP."

The only thing that my ped perked up over was my concern that, while she DOES use both hands, she doesn't use them at the same time. (PT also noted that her right side is weaker, although she does use it.) So he scheduled her for an MRI. He thinks there may be a problem structurally with her corpus collosum, but I'm not entirely convinced after reading about that online (again here goes me and my medical degree.)

I think she may also have sensory issues as well. She seems to be less bothered by pain, seeks out sensory stimulation by things like jumping, etc. etc. Too much to recount right here. Stressed out mind today.

I'm at a bit of a crossroads, as I think I have to seek out a new pediatrician and I'm wondering what sort of testing we should have done if the MRI comes back without answers.

Anyone else have any ideas of what sort of testing we could request to get to the bottom of this hypotonia?
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#71 of 88 Old 06-27-2009, 12:55 PM
 
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My son's hypotonia was actually caused by a metabolic condition affecting his mitochondrial function and ability to metabolize fat. If a child has hypotonia that is significant or hypotonia with other issues I think both metabolics and genetics need to be looked at. Prader-Willi would fall under genetics. There are a whole bunch of genetic/chromosome and metabolic disorders that cause hypotonia.
However, particularly in metabolics, the testing can be invasive and expensive. And when you move into mitochondrial function usually you're going to have to travel to someone who knows that area. So if a child is mildly hypotonic but otherwise healthy with no other signs of problems I don't know that testing is worth it.

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#72 of 88 Old 06-27-2009, 01:59 PM
 
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#73 of 88 Old 06-30-2009, 01:48 AM
 
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My daughter is almost 2 and has SEVERE hypotonia. She can't sit up, crawl, or hold her head up very well. I haven't heard of the muscular dystrophy, but that is something very interesting to me. I am going to look into that. PT hasn't even worked for her so since I have been around PT for so long I have taken her out of it and doing it myself 3 days a week at home. My suggestion to you is google the "benik vest" I purchased one for my daughter and it helps with sitting up greatly and even standing. If you can get a script from your dr insurance may cover it.
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#74 of 88 Old 06-30-2009, 11:37 PM
 
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My son was tested for PWS at around 3 weeks of age. He would not feed at all so that was the first red flag that something was wrong. They tested for a number of different things, I think. PWS diagnoses is done through genetic testing. There are a couple of "types" and different tests to be done. the DNA methylation will rule out all types of PWS with 99% accuracy.
visit http://www.pwsausa.org/syndrome/Genetics_of_PWS.htm for info. on this and other diagnosing criteria.

For males, there is a very high incidence of undescended testicles - over 95%. For a person who is older and not yet diagnosed, they would likely be short in stature and have incomplete puberty, and often small penis/testes. Another common trait is lack of vomiting. But please note that PWS is a SPECTRUM disorder and not all features apply to each person.

Many families with PWS do lock up the fridge/cabinets and find their children function better with this food security. Sort of an out of sight/out of mind thing. If the person with PWS knows that there is no way they can get to any food then they don't obsess over ways to sneak and get to it.

There are also "PWS-like" cases where a person does not genetically have PWS but can have all the classic symptoms. This is more rare but as we are learning more about genetics and various micro-chromosonal issues I think we will find new "syndromes" more and more through micro-arrray chromosonal testing.

The most important reason to do testing, IMO, is that there are specific medical issues to PWS and other disorders that can help save the child's life if you are aware of them. Also there are treatments for certain aspects - like with PWS growth hormone treatment has really improved the lives of many people. Our children who are on GH have improved muscle tone, higher IQ's and more energy. Feel free to ask any more questions about PWS!
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#75 of 88 Old 07-06-2009, 04:51 PM
 
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#76 of 88 Old 07-06-2009, 06:32 PM
 
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You would test him rather than his mother. See a geneticist. Any geneticist would be able to handle that testing I believe. Children's hospitals have genetics departments with pediatric doctors.

I believe they would be able to test for both conditions with the same draw/at the same time.

I don't know how the autism thing works. I believe that if a person meets the criteria for autism the underlying condition doesn't matter. I know that's true in metabolics but I'm not familiar with those particular genetic conditions.

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#77 of 88 Old 07-06-2009, 11:25 PM
 
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It would only be your DSS who would need to be tested unless he tests positive for the translocation type of PWS (which is less than 1% of cases) which is an inherited form. Testing mom would only determine if she was a carrier. Talk to a genetic counselor to confirm this.
Years ago they did not have the methylation type of testing they have now so there are many many undiagnosed cases of PWS. For most all cases (except for the one mentioned above), it is a random genetic "oops" with no real risk factors. No one in our family has ever had it or had any issues with genetic abnormalities or cognitive delays.

Small feet are very common. Another oddity is that bracelets on wrists fall off as their hands are small and are not wider than the wrist. If you go to www.pwsusa.com you should be able to see some photos of people. Some do have a particular "look" and stance.

I would imagine that if he already has an autism diagnoses that this would not hinder him. Many with PWS do fall under the autism spectrum as well.

The lack of vomiting feature is an important medical one. For those who never vomit, if they all of a sudden start vomiting it can mean that it is a life-threating situation and they should be immediatley taken to a hospital. There have been cases of gastric rupture where vomiting occurred (due to an one-time excessive intake of food or water). You can read more about this on the PWS site. This is what I mean about getting a diagnoses so you can be aware of potentially life-saving situations.

Good luck - I hope you find some answers!
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#78 of 88 Old 07-07-2009, 11:58 AM
 
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#79 of 88 Old 07-09-2009, 12:05 AM
 
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Motor planning issues def. go hand in hand with hypotonia - we have to physically move his body to show him how to do something and after a few times he seems to create that neuro-pathway to the brain and remembers how to do it. I understand that Hypotonia is either brain based or muscle based.

Sensory Processing Disorder is also common - hypotonic kids can often be sensory seekers . DS loves bear hugs, rough play (only with those he feels safe) and can occasionally have issues with picking (nose, scabs, etc).
This is Audrey to a T! She is a fairly quick learner, but you have to show her how to do everything- she doesn't really figure it out on her own. For example, stairs. Before we did stairs in pt, she never so much as went near them, it just wasn't in her mind at all. After two sessions of doing stairs, she now climbs on everything. She doesn't seem to learn by watching/observation, you have to show her, like move her body to show her the movements. After that, she picks it up pretty quickly.

She is definitely a sensory seeker as well. Right now her favorite thing to do is lay down flat, and let her face lay on whatever it is that she is laying on- the floor, the pavement, a doll, the cat's dish of dry food, etc. She will just lay down from crawling, and lay there with her face on the ground. Not for a long time, just a little bit, like under a minute. It looks like she is resting actually. She's been doing this for probably a month-6wks, where as before this, she HATED tummy time, would scream when we put her on her belly.
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#80 of 88 Old 07-09-2009, 12:34 AM
 
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If you go to www.pwsusa.com you should be able to see some photos of people. Some do have a particular "look" and stance.
I was curious so I clicked on the link but it goes to an advertisement site. I think you mean www.pwsusa.org.

http://www.pwsausa.org/

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#81 of 88 Old 07-09-2009, 01:08 AM
 
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I'm coming out of lurkdom to respond to this interesting thread.

My DD (17 months) is a bit of a mystery baby- suffered a full on regression of all motor skills at 6 months and has sloooowly gained, but remains severely delayed (can't sit up, crawl, fed by g-tube, etc. ) We have done an absolute poopload of diagnostic testing, the most recently being a muscle biopsy, but so far everything's coming back normal.

She's been labeled with central hypotonia and developmental delay. Its never even occured to me that hypotonia could be a diagnosis in and of itself. Very interesting!

Anyone out there with an older hypotonic kiddo who eventually learned to walk after super-delayed sitting? I keep reading that kids who don't sit by two generally don't learn to walk. I hope she's sitting by then, but that birthday's just kind of hanging out there like a dark cloud.

My youngest son is 4.5 years old. He did not sit up unassisted until he was 27 months, he walks, runs, etc. We did a lot of trunk strengthening exercises, bought him a Rifton chair and and propped him up with pillows to help him until he could sit up unassisted.

Take care,

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#82 of 88 Old 10-08-2011, 11:31 AM
 
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Dear mates,

I am glad I have found this forum and to be honest I am really suprised that so many children suffer :(. Till now I felt myself that there is just my child with this strange condition far away around I even have never heard before about hypotonia till the time we starded experienced problems with significant development delay at one year of age. And I have already learnt a lot from all the posts in this group. Now I have finally better idea what we should expect in the near future because I was always having no idea what it is going to be as doctors are saying “nothing” and after some time I think I know more about this “diagnosis” then they do. They significantly has no other experience with the child with hypotonia before and I see their wonder and interest in my son progression. It is because I am from small town and the neurological threatment here is as well very terrible. Therapist do more nothing then something :( Unfortunatelly any specialist is too far from us as well as any suitable therapy so we do hard work at home mainly on our own.

I am really wonder if anybody has an experience with SCENAR therapy? Or has heard about someone has tried it? I have heard a lot about this therapy and it’s rumoured possitive curing effects. Like excellent progresses while threating cerebral palsy (and other neurological, skin, ... and many many other diagnosis). It looks like it can help to get progress within any diagnosis. You can find some doctor’s recommendations onto this therapy on internet but I cannot find any evidence of someone’s real experience or someone’s apparent positive achievements while threating their diagnosis with scenar.

I would be very grateful for sharing your or somebody you know experience whatever it is…

My son has decreased muscle tone and still cannot walk independently in his 24 months because of this hypotonia. So I think we might try this therapy…

I really appreciate your comments… :)

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#83 of 88 Old 10-08-2011, 08:52 PM
 
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My son also has hypotonia. He has hit all his gross motor milestones late and has been in PT and OT since he was 13 months old. 

 

He does have an underlying diagnosis: developmental dyspraxia, which is a neurological disorder. He has poor motor planning in some areas, particularly feeding and swallowing, and also dressing, but oddly enough, his fine motor skills seem to be at or above age level. A pediatric neurologist diagnosed him. I encourage pushing to see every specialist possible to see if there's an underlying cause.. Having a diagnosis really makes finding appropriate treatment much easier. 


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#84 of 88 Old 07-14-2012, 12:53 PM
 
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I am so happy to find other people with children like my daughter. Like you all I was worried and knew there was something wrong but all the doctors didn't listern and although I was informing them to look at her feet (she has very flat feet and walks on the inside of her feet where her little toe doesn't reach the floor) they were all saying I was being silly and she will be alright and it took to moving counties to a new doctor (number 5) to cooly say argh yes I will put you in contact with a specialist. 
Again, like others here, she was a late sitter and a late walker but is very good at talking and the sitting activities although suddenly (she is 31 months) she has started to 'do running' which is more like fast walking with her arms out like a zombie and jumping where she can in fact jump off the floor about an inch. She has physical therapy once a week for 45 minutes and we go swimming every sunday, although it takes her a good day to get over the swimming. Some days she is happy just to sit around the house and do drawing etc. I have a placement for her in September at nursery just 3 half days a week I do hope she will be alright.  I have been informed that there is an operation at about the age of 7 where she could have her instep supported by pinning it up but it can only stay in for 3 years and then it has to be removed. Has anyone else heard of this or had it done?

The more i read about hypertonia the more it would seem i have it, the posture, the 'not getting anywhere' when running the bad PE reports from school, the bending of the limbs etc. I have dyslexia as well and I am wondering if this could be a result of the hypertonia? 

my daughter is doing very well and we have another daughter some 5 months old and the difference at the milestones is great as our first daughter was witting unaided at 9 months our second is nearly there at 5 months. 

I would be interested in hearing from parents of older children to find out what to 'expect'.

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#85 of 88 Old 07-14-2012, 04:31 PM
 
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I just found this thread and didn't have time to read all the responses but my dr just casually diagnosed my daughter with hypotonia without even telling me. When we were asking him for a referral for specialists regarding being on the autism spectrum, he just kind of said "oh yea and there's that hypotonia I diagnosed her with at 18 mos". He's a great ped and gave us lots of referrals with no trouble, however I would have wanted to know he considered her to have hypotonia at 18 mos and possibly have started physical therapy then and there. We thought she was just oddly clumsy greensad.gif in her case I do believe its related to being on the ASD. She didn't get a diagnosis for that yet either. Its hard to wait to know what's wrong with your child. I'm amazed so many kids have this issue

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#86 of 88 Old 07-19-2012, 05:52 AM
 
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Hi,

 

we have some progresion with our son. He has been diagnosed with spastic diplegia (cerebral palsy) that must be developed during a prenatal development it is uncertain background as there are no findings on MRI of his brain at all. However we were said it might be caused by a bad cold I was experienced during first trimester.

 

After diagnosis was specified we were given botox injections into both of legs at the oge of 2,5 and 2 weeks after our son started to walk independantly for the first time in his life. It is not walking as walking but he is able to walk alone alongside a flat and for a small distances outside. Now we are expecting examination with neurosurgeon to be said if we are eligible for a selective dorzal rhizotomy that my help our son to loose spasticity in his legs forever so we are in great expectation.

 

We are happy about our threatment at the moment because all the results we got were at the children hospital DFNSP in Bratislava Slovakia where we started to visite app. every 3 months for various threatments. There is really excellent care for children. It is 3 hours travelling for us to get there but it cost everything as they have great experience with all neurological diagnosises.

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#87 of 88 Old 11-08-2012, 02:51 PM
 
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I just found this thread while doing some research online regarding my grandson's condition.  My grandson has hypotonia.  He is now 11, and is doing "well" relatively speaking.  As an infant, he could not sit up, roll, crawl, stand up or walk until long after others in his age group.   He has progressed well, but is still far behind his contemporaries in physical abilities, and it is becoming clear that he will never catch up.  By my estiamte, he is at 60-70% of muscular function.   That is tough on a young boy, because he cannot participate with his friends in physical activties on anything close ot a competitive basis.  However, he has a lot of support, and there are non-traditional opportunities for him to be involved in physical activies.  He is currently involved in a "sled hockey" program, when he is strapped into a sled with a runner, and has two small hockey sticks to propel the sled and to hit the puck.  That is just one of many opportunities.  He also was blessed with a mighty intellect, and is far ahead of his contemporaries in terms of his intellectual skills and accomplisments. The bottom line is that the condition does improve in most cases, in varying degrees.  Also, there are opportunities for children with this condition to become involved in physical activities and sports.  You just have to look for them.   There have been some developments in the area of treating muscular disorders.  Most of the research is in the area of muscular dystrophy.  A very recent development in that area is a still experimental drug called Eteplirsen.   The drug has been very effective in treating Ducheme's disease, which has many of the same manifestations of hypotonia.  It appears to encourage the growth of the proteins necessary for muscle development.  So far, there appear to be no side effects.   I am trying to determine if this treatment might also be effective for hypotonia, but I am not sure if the root causes are the same.  Good luck. 

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I saw your thread and my friend's daughter went through the same pattern your daughter did.  They too went through a bunch of testing.  Ellie went undiagnosed for the longest time and then finally they nailed it.  She was diagnosed with Rett syndrome.  It is a syndrome that is rarely tested because at the time not much was known about it.  Today they have a better understanding about it but still do not test regularly for it. 

I don't know if it will help but here is the link. 

http://www.rettsyndrome.org/
 

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