Tina about the hypotonia and wheelchairs

[Guest guest]

Hi Tina, reading about your Sophia, reminded me of Santi. Born with major

hypotonia of the muscles. You said something that has made me a little

nervious, I also did the EMG on Santi when he was 2, also came back normal, but

you mentioned that some doctors are mentioning that some children with muscle

diseases only live in the 30s and are in wheelchairs, now wouldn´t they be

talking about de-generative muscle diseases??? I thought that if they had

de-generative such as spinal muscular atrophy, they would not be getting better,

but worse...in addition, the EMG would have come back showing problems, either

in the nervous system or muscles. Doctors throw out too many things, without

thinking of what they are saying. Neo-natal children born with hypotonia or

connective tissue disorders THAT IMPROVE with time, should not be told that they

might end up in a wheel-chair down the line, that is something that only the

will of each child and parent will

decide. That is what I have been told by several docs, but you have me

thinking and worrying that maybe their is some neo-natal connective tissue

and/or muscle disorders that improve initially (Santi is now 6 and went from 0%

of muscle mass to about 60% right now) but then decline. Please let me know if

the docs mentioned anything else, I will bring it up at my next appointment with

Santi. Good luck with Sophia, she sounds like an angel...B.T.W. we also stopped

the muscle byopsy, like you mentioned won´t change the treatment and it is an

agressive method of obtaining bone, only one of the 5 docs I have seen even

wanted to do it, I think unless the child is worsening and they want to find out

why, I wouldn´t do it.. Take care.,.

Kelli and Santiago

[infantile_scoliosi s] 5 year old girl needs our help

Watching the local news last night I heard a headline I could not

ignore. A 5 year old girl now paralyzed from the chest down after

surgery to correct a scoliosis related condition. Hearing this, I

looked down at my son sleeping in my arms. He is in his first cast.

If I hadn't researched treatment myself and had followed the first

recommendation of surgery we recieved, that could have been Jaydon. It

brought into perspective, even more, how critical educating our

pysicians on EPT is for our children and the children of those who are

not aware that they have options.

Here is a link to the website for Abrigail Gadson. I hope some of you

will be able to help. I intend to do all I can for a family that

wasn't as lucky as my family has been.

http://www.abrigail

<http://www.abrigail gadsonhopefund. org/Abrigail_ Gadson_Hope_ Fund/Welcome. >

gadsonhopefund. org/Abrigail_ Gadson_Hope_ Fund/Welcome.

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