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I wanted to comment to tell you that we are blessed with a son Luke that has Quad Cp . He is only four and we have been following his hip development with an Ortho . We have talked about hip surgery but I'm really not sure I want to put him through the pain and the casting as well as the muscle spasms from being in a fixed cast for weeks .
I spoke to a mom yesterday that has been through allot of ortho stuff with her son and she said "put surgery off as a last resort ", "Wait as long as Luke is not in pain " ! I just wanted to pass on her advice to you .
Have you tired a SWASH brace ? This brace would help her leg and possibly foot position while she walks ?
Thinking of you and sending hope and healing your way today , Hugs Ronda & Luke
----- Original Message -----
From: Sandra SanchezSent: Wednesday, June 10, 2009 6:52 AMSubject: Re: [cerebralpalsy] oral baclofin
hi my daughter is 4 and has mild cp only in her legs, she is high funtioning,she walks and runs granted her gait is a little odd but she keeps up with her 6 year old brother.she see's dr stelly seitz in houston,
she has had countless botox injections.they would like her to have a rhyzodomy.but i feel that is way to invasive right now.her orto wants to cut her bones to straighten her feet she is very pigon toed. i need to talk to other parents that have gone thru these things. now they want to do oral bacolfen. she also has a seizure dissorder.they have her on carbatrol and keppra. im so afraid of damaging her liver.i guess im a little parinoid.i lost a daughter to cancer in june last year .now my son is fighting that same battle. different cancer.so im scared to death to try new stuff.. and advice you all can give is appreciated
From: MARY PHILLIPS <p_l_u_m_d_u_m_b@yahoo. com>
To: cerebralpalsy@yahoogroups. com
Sent: Wednesday, June 10, 2009 1:03:13 AM
Subject: Re: [cerebralpalsy] oral baclofin
Hi there. I have a 3 year old son diagnosed with spastic quad CP and Dysphagia (swallowing issues). As soon as we started him on the oral baclofen, within a couple of days, he started having even more trouble than usual swallowing his food and actually aspirated on his apple juice. He also had a very strong AT &R reflex that surfaced and even after taking him off it, the characteristics of the athetosis are still there and are not masked by his spasticity anymore. His arms and head turn sideways and he gets stuck there. He has been off the medicine now for 6-8 months. It was not the right choice for my son! Hope that this helps some. Take care and good luck!! Maria
--- On Tue, 6/9/09, temp_mom <temp_mom@yahoo. com> wrote:
From: temp_mom <temp_mom@yahoo. com>
Subject: [cerebralpalsy] oral baclofin
To: cerebralpalsy@ yahoogroups. com
Date: Tuesday, June 9, 2009, 7:42 PM
forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/
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