Discussion Forums
Mon, 02/01/2010 - 13:31
Our son Zachary has received botox and phenol injections several times over the last couple years and we've seen great results. His range of motion and use of hands, arms, legs is greatly improved. We can really notice when the effects start to wear off. He's scheduled to get another round of treatment very soon, because he is getting very stiff once again. We know Zach will get more and more used to the treatment and it could eventually not work for him. Doctors have given us various suggestions for medications, but all the meds carry risky side effects and with Zachary's history of seizures, we just don't want to take the chance. So we're stuck in this limbo no knowing how many more times we can use this botox treatment to help his spasicity while also doing everything we can to hold off medication.
Has anyone had great experiences with medication though, such as baclafen, or artane? And has anyone had their kiddos get so used to botox that it doesn't work on them any more?
Hello Nathan
My son has had botox and baclofen. When Garrett had his first round of botox it worked great. after 4 mths the effect had worn off and we went in for our 2nd dose. But after the first round it never worked for him and we ended up tring it 2 more times. As fare as the baclofen he tried that and it worked alright, you sould try that b/c they can instale a pump in his body that will help the baclofen preform better. Hope that helped.
Carrie
My daughter is 16 now but had the botox injections in her hamstrings and adductors for a couple years before they stopped working for her. She is on 70 mg of oral baclofen daily and had tried a 3 day baclofen pump trial with no great change so we stick with the oral and it keeps the spasticity at bay. I would recommend doing the trial in hospital as that shows you what the pump will actually do. In our case it worked out because it made her sick and had a huge spinal headache and did nothing for her. If we just had it implanted, it would have had to come out. There is also Dorsal Rizotomy which we have not tried. Too scary but I have heard good things with the younger children. Hope this helped and good luck.