Infantreflux.org | Had the neurology appointment

This topic has 3 replies, 1 voice, and was last updated 14 years, 6 months ago by Anonymous.

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November 2, 2009 at 11:29 am #64408

Anonymous
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The neurologist that we had was amazing! We were there for about 2 hours with him checking out Isaac and talking to us. He thinks that there is something going on with Isaac. Isaac does not have reflexes and has low mucle tone overall among other issues. So far he has been diagnosed with some sort of myopathy and we started testing for genetic metabolic disorders. The neurologist and the developmental ped think it is a mitochondrial disorder. The neurologist thought that the feeding issues are connected to this. If we do end up doing a muscle biopsy the GI dr said that he will have a G tube put in. We are totally thankfull that we have finally found some drs that will look at Isaac as a whole and see that something is not right. Also Eli was brought up at the visit bc he is still not walking at 17 months old. The neurologist said that concerned him and that he considered it very important to Isaac’s case. Eli does start therapy this week but I cannot help but be worried about what the future has in store for my 2 little boys.

November 2, 2009 at 1:56 pm #64410

Anonymous
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Hi Sarah,

Hang in there! This can be a really tough road, but good doctors that take you seriously make the battle so much easier. Sounds like you are developing a great team.

My thoughts are with you and know that if you ever need to vent, you can e-mail/pm me anything anytime.

Ann Marie

November 2, 2009 at 8:40 pm #64425

hellbennt
Keymaster

hugs to you and your family, sarah!!
I’m so glad you’ve found drs that are looking at the whole person!
wow!

please keep us updated and, if you have a moment, please post who these
wonderful drs are
https://www.infantreflux.org/forum/forum_posts.asp?TID=13260

~laura

hellbennt2009-11-02 20:41:39

November 6, 2009 at 8:37 pm #64457

Anonymous
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I’m so glad that you found a doc that you like. We ditched our first neuro b/c i wasn’t happy with him, and it makes such a big difference to have a doc who looks at the whole child. I hope that finding answers helps Isaac. There are quite a few kids on P2P with mito disorders, so hopefully that’s another source of support for you. HUGS.
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