Hypotonia in children - Page 4

[Emma_31]

Originally Posted by sbgrace

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.

[loraxc]

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.

[Emma_31]

Originally Posted by loraxc

??? 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.

[Emma_31]

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.

[CorbinsMama]

Oh, good! I'm glad you're on the right track now.

[laragazza]

metabolic specialist in houston?

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,
Susan

[MotherWhimsey]

Mary Kay Koenig at Hermann memorial in Houston. She's brilliant! We really love her.

[half-pint]

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.

[veiledexpressions]

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

[mommatj]

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?

[sbgrace]

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.

[guestmama9916]

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[Calliesmom]

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.

[half-pint]

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!

[guestmama9916]

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[sbgrace]

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.

[half-pint]

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!

[guestmama9916]

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[mommy2maya]

Originally Posted by half-pint

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.

[BookGoddess]

Originally Posted by half-pint

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/