HidingFromYou
05-25-2004, 07:06 PM
I'm a 16 year old girl, and I'm deciding between either botox or a pump in my back to help my spacticity (sp?) and I was wondering if anyone had either one done... any advice would help.
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Zagreus
05-26-2004, 09:49 AM
I'm a 16 year old girl, and I'm deciding between either botox or a pump in my back to help my spacticity (sp?) and I was wondering if anyone had either one done... any advice would help.
I'm not at all familiar with that procedure so I won't pretend to give you advice. My son, however, had botox therapy several times and it worked well until he hit pre-adolescence. Then the botox couldn't really keep pace with his growth spurts. He recently had his heel cord lengthened surgically. Though he's still in a cast, it looks very promising. For the first time in his life he's getting a normal range of motion in his ankle and foot and getting his heel down to the floor.
Again, I have no idea if any of this applies to your situation. I offer it only as information that you and your parents or guardians might want to consider as you talk to your doctors.
Good luck!
I'm not at all familiar with that procedure so I won't pretend to give you advice. My son, however, had botox therapy several times and it worked well until he hit pre-adolescence. Then the botox couldn't really keep pace with his growth spurts. He recently had his heel cord lengthened surgically. Though he's still in a cast, it looks very promising. For the first time in his life he's getting a normal range of motion in his ankle and foot and getting his heel down to the floor.
Again, I have no idea if any of this applies to your situation. I offer it only as information that you and your parents or guardians might want to consider as you talk to your doctors.
Good luck!
HidingFromYou
05-26-2004, 07:06 PM
I guess it applies to my situation, but I have talked to my doctors, and they haven't really had an opinion on which is better for me. I think the pump gives a small amount of medicince to relax the muscles or something like that. Once I get more information on the pump I'll post it. It might benifit others... but thanks anyways for the reply. :wave:
Zagreus
05-27-2004, 10:03 AM
Have you seen an orthopaedic surgeon for an opinion?
HidingFromYou
05-27-2004, 11:05 AM
No, but I don't see why it would really help my case any
lastramy
05-27-2004, 06:52 PM
I am 39 with left sided spastic hemiplegia. I was offered baclofen as an oral medication but was told it has several sedating properties to it as side effects. Are you in a wheelchair or are you mobile??
I have been getting botox injections for over a year now. I get them in several locations. I usually get my gastrocs/soleus muscles of the lower leg done and then the adductors and iliopsoas group for the upper leg.
The botox then has a weakening effect on the muscles which will allow you to better strengthen them.
Botox is not for everyone as is the case with baclophen. There are also other muscle relaxers out there that may do a better job if you are an active person. You should get some more advice from your doctors.
The botox is temporary also in that you have to go back every 3-4 months for reinjection. On average I get no less than 5 injections and have received as many as 10 at a time. Something else to think about if you don't like needles.
Well I don't know if this helped but good luck and talk to your doctor some more.
Lastramy
I have been getting botox injections for over a year now. I get them in several locations. I usually get my gastrocs/soleus muscles of the lower leg done and then the adductors and iliopsoas group for the upper leg.
The botox then has a weakening effect on the muscles which will allow you to better strengthen them.
Botox is not for everyone as is the case with baclophen. There are also other muscle relaxers out there that may do a better job if you are an active person. You should get some more advice from your doctors.
The botox is temporary also in that you have to go back every 3-4 months for reinjection. On average I get no less than 5 injections and have received as many as 10 at a time. Something else to think about if you don't like needles.
Well I don't know if this helped but good luck and talk to your doctor some more.
Lastramy
Zagreus
05-27-2004, 09:18 PM
I asked because an orthopaedic surgeon operated on my son. It sounds like you're dealing with different issues if no one's had you consult with an orthopaedic surgeon. Lastramy's asked some very pertinent questions, I think. My son's spasticity was in a range where lengthening the tendon by 2 cm may give him a full range of motion. Your situation may be more complex, I gather.
Good luck -- I'll keep you in prayers.
Good luck -- I'll keep you in prayers.
KIDSAREGREAT!
05-29-2004, 12:09 PM
We had to make that same decision when my son was very young. He first tried the baclofen pills and noticed major side effects so he switched to the valume sp? but he was still not himself. After going through that, we knew a pump would be out of the question. You could first try the pill version if you aren't now.my son ended up trying botox. It worked well but didn't last long we opted for the tendon release surgery which worked great! now he is 9 and we are facing the decision between surgery or botox. We are doing the botox b/c now that he is very active and the botox could give him the little bit of range of moyion that he needs. Pretty much, you have to do what's right for you just. I would definitely check out everything thoroughly before making a permanant decision!
Hurdy
06-03-2004, 02:45 AM
Hi There, I am a mom to a severely handicapped child. I must say that i have not had to deal with this particular situation with my son, however, i do know about the Baclofen pump placed in the lower back. A friend of mine has a son who has severe spasticity and the docs recommended the pump for him. It was the best thing that could have happened for him! The pump was filled with the Baclofen and placed, as with any medication there is trial and error until the right dose is achieved for each individual person. For his spasticity it has worked wonders and was not over sedating to him. He has had the pump for about 3 to 4 years and goes in the docs every month to have the pump refilled with medication. As with anything, what is right for one person may not be right for the next and is a personnal choice. I hope the info helps some. Hurdy
madine
06-16-2004, 09:29 PM
Hi,
I'm a mom to a fourteen old boy who is a victim of shacken baby syndrom at age 2. I've been searching for informaton on the baclofen pump. Yesterday I visted a young lady who has had the surgical procedure for the pump. Her mother says it has made all the diference in the world for her. She is no longer stessed out with painfull spasms. I'm going to authorize his surgery tomorrow. Good luck and I'll get back to you after we have had some time with the pump. I sure think it is worth a try.
madine
I'm a mom to a fourteen old boy who is a victim of shacken baby syndrom at age 2. I've been searching for informaton on the baclofen pump. Yesterday I visted a young lady who has had the surgical procedure for the pump. Her mother says it has made all the diference in the world for her. She is no longer stessed out with painfull spasms. I'm going to authorize his surgery tomorrow. Good luck and I'll get back to you after we have had some time with the pump. I sure think it is worth a try.
madine