It has been suggested to us that we see about getting into Dr. Gooch at PCMC for some
spasticity treatment. From what I know so far it is using a form Botox to relax muscle. Do any of you know anything about this or Dr. Gooch?
I am a bit nervous to go down this road with Bree because I am not sure what the long term effects are. But we really need to try something because she is has kinda taken a few steps backward due to her growing and her muscles not keeping up with the bones. She is in constant pain and we are at a loss. Any thoughts?
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Mother to a five year old daughter who has cerebral palsy.
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Mother to a six year old boy with Autism.
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Mother to a four year old boy who is currently undiagnosed
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Mother of an 18 month old girl who has schizoencephaly
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mother to two children with Asperger's and sensory issues.
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mother of two girls with complex 1 mitochondrial disease
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Mother to a 2 year old boy born with gastroschisis & brain damage
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mother of a two year old girl who has spina bifida
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mother of a three year old boy with cerebral palsy, hydrocephalus and low vision.
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Mother of two micro-preemie girls born 4 years apart.
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Mother to a one year old boy who has chronic lung disease.
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Mother to a six year boy with autism, and a 19 mo. old boy who is undiagnosed
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mother to a 4 yr old with PVL,CP,CVI,SD and a 3 yr old with FAE & SID
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Mother to a 4 yr old boy with CP, seizure disorder & hearing loss
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Mother to several adopted daughters who all have cerebral palsy
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Mother of a 24 year old boy who has cerebral palsy
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mother of a daughter with 'short gut'
mother to three boys with autism, PDD-NOS, ADHD, and one undiagnosed.
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Mother of a daughter who has DiGeorge Syndrome
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mother to a 3 yr. old boy with PDD-NOS
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Mother to a little boy at risk for PDD-NOS
2 comments:
We see Dr. Gooch and LOVE her. I was not totally sure about her at first and the first time we met her I was so glad we were getting on a plane heading back to Arizona but his last 3 times seeing her I have LOVED her.
We did botox for awhile. It didn't work near as effective as our phenol treatment. We did phenol at Shriners. We will be repeating them in June.
Botox is scary at first and so many people freak about it but we found it no big deal. In fact Tyler was not sedated for them at all ( but we were in Arizona) The effects were not as shocking and or dramatic as I expected them to be.
I would try phenol again and will be doing it again along with serial casting. It made a world of difference.
We have also seen Dr. Ockey 9(sp) at the office at PCMC. If you can get into the CP clinic at shriners they do awesome
JT gets Botox every 6 months. I have seen a huge difference. We have done it with and without sedation. Either way isn't too horrible but for the next little while we will have to do sedation just because JT is getting a real fear of doctors.
For us it has given him just the help he needs. His muscles are atrophied because of Botox but other than that we have no complaints.
There are 2 different kinds of Botox. I wish I could remember exactly what they were called. One is more risky that the other. Not to say that either would have an adverse affect (it doesn't happen often) but one of them has almost no risk.
I hope I have not worried you. Botox has been a miracle for us. I hope you find what your daughter needs.
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