Hypotonia and bad Hypermobility at 16 months old, what to expect, anyone with experience?

Tera - posted on 03/19/2011 ( 2 moms have responded )




We have no diagnosis for these symptoms yet but she is no where near walking and has just got her first AFOs. We will be getting several tests done in the next few weeks to try to determine what is causing this. Does anyone have a similar experience? What was the diagnosis?


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Gaby - posted on 12/03/2012




My daughter was born with hypotonia too. when she was 3 months old she couldnt hold his head.

We started fisiotherapy, every day, three times a day. I went to 2 differents places to see doctors. Here we have "TELETON MEXICO" wich is an institution that helps kids when they need fisical therapy. A friend gave us an electrostimulator and it was wonderful.

She worked so hard since then. We did everything the doctors said. She has an atrophy of the brain- a litle space in her brain.

Now she is a normal girl, She goes to a school and the teacher is surprised of how samrt she is. She knows colors, some numbers, she obbeys orders, she is learnins so many words, she doesn't use diappers or bottle since 18 months old.

She doesn't need the rehab exercises anymore, since this february, she is a strong litle lady, she is 2 years old now.

The doctors dont know if that litle space means anything, if she is going to have some kind of trouble learning or something or if she is going to be a normal girl. We must check her with a neurologist and an orthopedic every year.

I saw kids that their parents didnt take them to fisiotherapy and they were 1 o 2 years old and they were lying on a bed. it was awful because you have the oportunity in your hands to give your baby a better life.

We were lucky enough to se her holding her head, to crawl, and now she walks, she runs, she jumps and she loves dancing..

The orthopedic diagnosed us (my 3 kids and me) with EHlers Danlos, nos we are theing to find the right doctor. The older (6 years old) has Wolff-Parkinson-White and he had an hernia, the middle one (3 years old) has strabismus (looking ofr botox or surgery), hernia (surgery next month), and they have asma too.

I found out about EDS asking and asking in websites, and doctors and a doctor on facebook told me to see if we had eds and she was so right.

So i,m still living day by day, trying to do the best for them, and for me too, i have EDS and POTS.

My advice to you is to MOVE, i went to a doctor and then i went to a second opinion, for every litle or big decision i look for a 2 or 3 doctors opinions. now im sure that was the best for her. it was crazy. i have two more sons and they had to understand how our lives changed.

Now im so proud of my three kids because they fought like superheroes. those were hard times but it was worthy for all of us

Made us a grateful, faithful, strong family. God is with us and is going to be with you, am praying for you and your baby, And if you need anything im here for you,

Iridescent - posted on 03/19/2011




Those are common with EDS - Ehlers-Danlos Syndrome with Hypermobility. It also can go with Congenital Benign Hypotonia, which resolves at 2 years old. There are a few other things as well. Just use the supportive equipment and push for anything you need well in advance of needing it, since it takes so long to get (ex: medical stroller/wheelchair, 6+ months).

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