Hypotonia Support Group

Hypotonia is a condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.

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rmae990 01/06/2011

Hi everyone, I am glad to have found this group. My son is currently 20 months old and not walking (although he just started walking on his knees). He did not pull to stand until 14 months or crawel until 15 months. I was told by birth to 3 that he just had a developmental delay. I finally went on my own to a private physical therapist and he was dignosed with hypotnia which effects his core and lower limbs. He suffers from very bad constipation which he was actually hospitalized for 3 days because he was compacted which caused severe dehydration.

I feel like birth to 3 has let me down a lot. They only service him 2x a month for 45 minutes. I am currently having my insurance pay private PT (thank God) for 4x a month. I also had to push to get referred to an MRI which we are having done Jan 10th. Birth to 3 is not taking this seriously and I have to advocate for everything.

It hurts me so much to see my son struggle so much and have no diagnoses other than Hypotonia and no where to turn. I guess I just needed to vent.

deleted_user 01/07/2011

First of all Welcome you came to the right place to vent we all do it hear. Well I now exacly how you feel my son is now 4 1/2 years old but he was diagnosed with Hypotonia when he was just 18 months old. He could not sit on his own until he was 21 months also could not pull to a stand or walk until 22 months old. He had therapy since he was 22 months old. Now he is abel to walk, play, even run but he does struggle alot with synple things like getting up when he is laying down. You just have to keep it up pushing for what you belive in and if you feel there is something else going on don't give up I didn't. My son was diagnosed at 27 months with Autism, at 18 months the hypotonia, at 3 1/2 years old with Von Willebrand's (bleeding disorder) and just three days ago with a Syrinx on his spine that goes from the top to the bottom of his spine ( it is a cyst in the spinal cord). I new something was not right with him since he was just 3 or 4 months old, I am a mother of three he is the baby. Well this is why I saay don't give up until you get the answers to your doughts. He is a amazing little boy, This site has helped me alot with getting answers to my questions and also help with what to ask Doctors.
I hope my little story helps in a way or another just remember ALWAYS HOPE FOR THE BEST AND SMILE ABOUT THE REST this realy helps.

rmae990 01/07/2011

Thanks for the reply and the encouragement. I am so glad to hear that your son has come so far! My so is also on miralax indefinately because he can't seem to pass a bowel movement without it. You seem like a great mother who has done so much for your son!

We will be having him fit for sure step orthosis (leg braces) this monday and I am praying that they help. He just seems to frustrated with himself. I know he wants to walk, he just can't. I don't think that our MRI will come out with a solid dignoses either. Our neurologist said that he has seen many kids like this and no cause is found. I think that you are right that as he gets older the why will seem less important.

I am truly wishing for the best for all of us!

deleted_user 01/08/2011

Eddie wa fitted with AFO's ( ankel and foot orthotics) back in May of 2010 they are a miracle helper for my son he whent from falling on his face 2 to 3 times, to now only falling when they are not on and maybe once or 2 times a week. They are realy amazing and it is with them that he stanted to be abel to enjoy the play grounds and outside activities. Eddie also has the bowel problem he has been on Peg for the past year and it helps but he still only has bowel movements once every 2 to 3 days, he also does not feel him self go all the time for pee-pee or poo-poo, he is still wearing pull-up day and night. I am only good at what I have sone thanks to the help of his teem of Angels as I reffer to them, but thank you it is always nice when some tell you you sound like a realy good mom. I thing you sound like a great mom too. Keep it up and you will see he will be a amazing little guy to, he is very cute.

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