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chromosome disorder ; baclofen ; preemie twins

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Old 09-16-2009, 09:10 AM   #1
josephs mommy
Join Date: Sep 2009
Location: carthage, MO USA
Posts: 1
josephs mommy HB User
chromosome disorder ; baclofen ; preemie twins

Hello, I am new here and trying to find other moms that are going through what I am. I had a set of boy/girl twins in Sept of 2007. They were born at 34 weeks and had to stay in the NICU for 24 days due to lung development and feeding issues. They came home on Apnea moniters and Oxygen. They seemed to be developing normally for the first couple months. When they were about 4 months old, my son had to have a bilatteral hernea surgery. (sp) After that, he lost alot of weight and he seemed to be at a standstill. So finally I talked my doctor into getting him started in therapy at the age of 9 months. As a mother I knew something was wrong but the Dr. seemed to think I didn't know what I was talking about. He started getting OT, Speech, PT and Development therapy. Then I finally got into a neurologist when he was about 14 months old. He was thought to have CP for quite a while and then the MRI told us that he didn't have it. They said he has a chromosome disorder. He has 2 extra fragments of chromosomes. They said it was very rare and they don't know much about it. So I am trying to find other moms who have this.
Ok, so then last week I was told about BOTOX shots for his legs due to the spasticity in his legs. This was the first I've heard about it and I was told by other mothers that it was a very painful process and his therapist doesn't think it will benefit him. They told me to try the Baclofen first. I am wondering how this will affect him. I don't like to give him drugs if I don't have to but I am wondering if this will help him. He is almost 2, all he can do is roll over and scoot across the floor. He can babble but not say any words, has a very hard time gaining weight. He can sit with help, without help no longer than 30 seconds or so and he is starting to bring his legs up into a crawling position. I am wondering if this drug will help him with the therapy to progress faster or help him at all in general. Meanwhile his twin is walking, talking and doing everything she is supposed to be doing which is how I knew there was something off about him in the first place.
Sorry for such a long post, I thought the background info would help a little bit.
Thanks so much & I would appreciate any help from anyone out there who may have children like my son.

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