Hypotonia Support Group

Emma has Down Syndrome and Hypotonia...so a boat load of tests were done...she was DX with Hypotonia at about 3 weeks old and started PT at that time... we started to use Thera Togs at 4 months and after a few months she didnt need them anymore and was almost parallel to typical peers...we still have some lax but she is improving every day...we also have OT and Developmental that complement the PT and she really does well with that...we are able to work on the same problems but multiple times a week and in different settings...Emma will be 2 next month and the only lingering problem we are having is feeding...but with Vital Stim we are moving right along...she still gets tired with the repetition of using a spoon but shes improving at a steady rate...I do believe that her hypotonia has affected other areas...its hard to gain skills when you dont have the strenght...like fine motor and even alot of gross motor skills...but I think with alot of moderate therapies and the Thera Togs...she will continue to make progress...this is the only support group for hypotonia that I know of...but I havent felt the need to seek out more...we dont use any vitamins or supplements...good luck on lyour paper if you need clarification or have more questions I would love to help...

i started investigating my son's lack of movement and incredible fussiness at around 6 months, i did not hear the words hypotonia until about 8 months when my doctor mentioned it. he suggested going for PT if my son did not sit up by 9 months. so i started formal therapy at 9. my PT and doctor are wonderful at helping us understand and work out what is going on.

he has had an MRI which was normal and genetic and metabolic blood testing. nothing abnormal except some vitamins. by 14 months we were focusing more on nutrition and trying to get him more calories since he has been lingering around 18lbs for 3 months. he takes a multivitamin with iron daily.

so far no underlying cause has been determined but i have strong feelings about wether he got enough nutrition in the first 6 mo when i was exclusively breast feeding. he cried and cried...... we have speculated if his hypotonia caused him to suck/promote milk inefficiently. he has an atypical suck and poor use of his tongue to feed. we think the low muscle tone in his digestive system causes him to reflux. perhaps this was his reason for not wanting to be on his tummy.

so now he is DD across the board. he recieves PT and OT once a week (both helping). i expect he will have speech therapy too. i am making an appointment today with an accupuncturist who specialises in allergy treatment (NAET.com if you want more info)

while the support services in our area are wonderful they struggle to keep up with a tight budget and heavy workload. my son's therapy is provided for free by SPARC and they also put us in touch with other parents in our area for support. along with our doc i feel very supported in this community. there are a wealth of alternative options in this area too which we are also starting to turn to now that we have some information.

my son is almost 15 months and after 6 months of therapies we see he is getting more outwardly happy and in the last month he will voluntarily go onto his tummy and shows signs of wanting to crawl.

Your first Q, we didnt realize julie had hypotonia till she was 2yrs, and that was because she was being tested for all other stuff, she has autism, sensory, OCD, anxiety,

She has had an MRI, CT scan, EEG, blood work and unknown the underlying cause.

I had to look it up online as I had no idea what it was, they gave mea paper explaining it that was it..

the only support group is here at DS

My daughter just turned 4 so for 2 years now

She recieves Occoupation therapy as well as ABA

No vitamins,

about after a year notice progress

She has a hard time running and walking, so that affects her, her hands tire easliy so that affects her writing,

I don't know when my mom found out I had Hypotonia but I do know I was under a year old. I did have lots of problems with blance when I was young, I hear this is commen.

I am now 24 and live an atipcal life. There are still things I can't do. Just thought this info might give you a different perspective.

at Tyler's 18 month well visit we discusses developmental concerns with the pediatrician (not walking, talking, etc.) He referred us to a neurologist who told us Tyler has hypotonia. No cause found after blood testing and MRI. One night while researching hypotonia online I found a HYPOTONIA center at John's Hopkins...their main goal is to find the underlying cause of the hypotonia which I'd like to know so badly...I think there's more to the puzzle. He's not been diagnosed with anything else, but I think he has sensory Integration Disorder. We go to John's Hopkins in August, I CAN'T wait!!! Tyler gets speech (not paid for by insurance cause hypotonia isn't a REAL diagnosis in the eye of insurance carriers), OT, PT, and is in a self-contained Preschool early intervention class in a public school (2 years old) He was actually one when I put him on the bus...turned two a couple of weeks later. Took a parenting kids with special needs class which was nice, but short. That's the only support we've received for us as parents...God I'd love to hang with parents who have kids with hypotonia.

When did you first notice your child had a problem? DURING HIS NEWBORN EVAL AT THE HOSPITAL

Were any diagnostic testing performed on your child (blood tests, EMG, Ct Scans, etc.)? If so, was there an underlying cause that resulted in the Hypotonia? HAD MRI AT 6 MONTHS SHOWED 1) BENIGN EXTRA AXIAL FLUID 2) EVIDENCE OF AN OLD BRAIN INSULT 3) ENLARGED GYRAL SPACES. WERE TOLD NOTHING IS DIRECTLY RELATED TO HYPOTONIA THAT THEY KNOW OF. HAD GENETIC TESTING ALSO AT 6 MONTHS WHICH HAS SHOWN A DELETION OF CHROMOSOME 8 q 21.11-21.13. AGAIN DON'T KNOW IF THAT DELETION IS RELATED TO THE HYPOTONIA.

Were the necessary resources (books, dvds,etc.)and support groups made available to you to help you cope with your child’s condition? NO, HAD TO SEARCH FOR EVERYTHING ON MY OWN AND HAVEN'T FOUND ANY BOOKS OR DVDS.

Are there organizations and support groups in your community that you are a part of? If so, which ones? P2P COLORADO, EXCEPTIONAL FAMILIES, FACEBOOK AND THIS SITE.

How long has your child been receiving treatment? SINCE 2 MONTHS OLD

Besides physical therapy, is there any other treatment that is assisting with your child’s development? OCCUPATIONAL THERAPY.

Have you tried or thought about trying vitamin supplements or any other holistic approaches in helping to treat this condition? I GIVE HIM MASSAGES EVERY NIGHT AFTER HIS BATH TO TRY TO STIMULATE HIS BODY AND MUSCLES.

How long after treatment did you begin to notice progress with your child’s development? NOT REALLY SURE AS HE IS MY FIRST BABY AND I FEEL AS THOUGH HE IS STILL SO FAR BEHIND. PROBABLY 2-3 MONTHS.

Has Hypotonia affected any other developmental areas for your child? IN ADDITION TO GROSS MOTOR, HE HAS FINE MOTOR DELAYS. HE APPEARS TO BE COGNITIVELY APPROPRIATE BUT THE GROSS MOTOR AND COGNITIVE IS VERY INTERTWINED AT THIS STAGE.

1. At birth
2. MRI normal, EMG should degeneration, all other blood work was normal.
3. There was no resources available to us except me looking on the internet
4. Just this group.
5. She gets OT every week as well
6.She was on Biotin for a 2 weeks then was told to stop after coming home from the hospital.
7. I thought immediatley but I was hoping for anything. I really don't know how much it helped. The Doctors of course was skeptical.
8. I don't know yet of any other areas develop have been affected
I think this is great. I hope I have been helpful.

my son was 6 weeks old that I saw something strange was happing to hem. His eyes were staring and his body was stiff, that was happing 2,3 times a day sometimes more so we took him to his doctor he checked hem and we were told that everything is oke, but I knew that something was wrong so I decide to take a video to let the doctor have a closer eye on what happens to my child. My husband took the video to the doctor, when he saw the video he advised us to make appointment with a neurologist. We made appointment with a neurologist in George town university hospital, at that time my son was 3 months old. When the doctor saw his video he told us that we have to stay for 2 nights and 3 days in hospital for medical and lab examination (MRI, EEG scan & blood test) they found that he is suffering from seizure and the problem is must likely located in the right half of his brain. The neurologist started treatment with prescription Phenobarbital, in matter of few weeks the seizure attacks were taking longer to appear. my son was 6 month old when we took hem again to neurologist for check up and than the doctor told us that he is also diagnose with hypotonia and his blood test was abnormal, ammonia in his blood was too high and the doctor told us it might be that our son has a metabolic disorders but the doctor wasn’t sure about that, at that time my us visa was expired and I had to leave us. I am from Netherland but my husband is from the United states that’s why I came here and my son was born here but I couldn’t stay longer than 6 months. In July 2008 I went back to Holland with my son and I did al his medical examination over again in Holland, MRI And EEG scan were normal but ammonia in his blood was again high the doctor in Holland recommended a PT once a week so I stayed there about 4 month until I got a visa and came back to my husband, that was in November 2008 and after few days we made appointment with PT. he had once a week PT. some how the attacks became frequent, the neurologist in George town university advised us to see another neurologist in children’s hospital in DC, our first appointment were in February 2009 and his new doctor in children’s did EEG scan and blood test over again in may 2009 and the good new was that his blood test was normal so he hasn’t metabolic disorder, I was so happy I cried from happiness but they saw something in EEG scan I don’t know what, the doctor told me something about sodium channel, in June they took blood for genetic test that called sodium channel gene so in September we well hear about the result of that test .
Now my son Akmal is almost 19 months old he cant sit unassisted, he can roll in his tummy and grab his toys and play with them he makes sounds like hahaahaha. PT comes once a week at home and he loves to play with her, she is from early intervention (infant and toddler connection) but sometimes I have panic attacks regarding my sons condition. Will he stand, walk, run? please can somebody give me a hope

I know that waiting for skills to come is torture. I just want my baby who will be three to talk so badly...it's SO hard waiting. Hang in there.

If a doctor hasn't told you he isn't going to walk, then I don't see any reason to believe that he wont. Our kids develop in their own time and we just have to support them and wait. It will come.

I have a strong faith in God and I believe God wanted our kids here. God must think an awful lot of us to give us these kids that are so special and who need lots of extra support, patience, and love. I know God has a plan for your son and I think things will be okay.

Thank you so much for ur support, you are right we have to believe in god and pray and never lose our faith in god.