Wednesday, August 25, 2010

Botox Problems

Hey guys! So last January JT got botox like he does every 6 months but something went wrong. After a month the botox started wearing off and wearing off fast. Within about 5 weeks of getting it we were back to where we started. The reasons we were given were that:
1. It was a bad batch of botox
2. It was a badly placed injection
3. For some reason his body isn't reacting the same way it used to.

So at the beginning of August we did another round of botox and this time we bumped him up to the maximum dosage. It worked. I have never seen his leg be that weak. You could tell how he walked and moved that the botox was working and when I pushed his foot back toward his shin it actually MOVED!

But now, not even a month later, I can see him tightening again. We have a night stretching strap but now that I am putting a little tension in it he can't sleep through the night with it. I can barely get his ankle to 0 (ankle and a 90 degree angle) and when I do he says, "Ow".

Have any of you been here? Do you know of other options other than surgery? We see his doctor in about a month but if I can come with some ideas it would be nice.


Luke and Erin said...

I am so there right now. It has been suggested that we do botox for Bree. I looked into it and I just was not 100% sure it would work.
With Bree we do massage... you can find a lot of info online or I can send you what I have. But we do it 3-4 times a day. And alway right before she goes to bed and right when she wakes up. It can be very wearing sometimes. But it seems to help.
Ask your doctor about tums. I have HEARD that the calcium helps losen the muscle. I have not explored this in much depth as I just heard about it. So do some research and I will let you know what I learn.
It is so hard to watch them get so tight. Bree's arm will sometimes ball up into a little baseball.

so would you recommend the botox, even if it lasts for a month? What are the longer term effects you have seen. I wondered if once it wears off, if it is more painful?

Katherine said...

Well, our situation is not really normal. For most people the botox lasts for about 6 months. When it was lasting 6 months we loved it. It was easy, lasting and made a huge difference. It felt like BOOM! tension was released in a day and we didn't see any tightening for 5-6 months. And I felt better about that than medication because botox is so localized.

JT's body seems to fight everything we do to it. We put in ear tubes and the first set lasted 8 months. The next set lasted 4 months. The next set lasted 2 months and then next set another 2 months. We had to upgrade to a more intense tube. Same thing is happening with the botox. It used to last the right amount of time but then his body started fighting back and the time between got shorter and shorter.

I don't think the doctors recommend getting botox more than every 6 months. Even when it wore off so fast we waited to get more done.

I hope that helps. We really have loved the botox, it made all the difference and it wasn't difficult to do.

Katherine said...

Oh, I haven't seen any long term effects. Once it wears off it is like they have never had it as far as I can tell. My son can't tell me if it hurts when it wears off but he has never complained.

The good thing about it is that it doesn't just weaken the tight muscles. While those muscles are weakened, the opposite muscles that don't get worked out because the other side was too tight can now get use. So the opposite muscles get stronger while the botox is in affect. Does that make sense? So in theory, you may strengthen the weak muscles enough to fight the tightness and eventually not need as much (or any) botox.

Miracles Happen said...

We did botox for about a year. We were doing it every six weeks-3 months. It didn't do ANYTHING for Ty. We went and did phenol. We also did serial casting with the phenol and saw a HUGE amount of differences. We did a round of phenol and no casting and we will do casting next time. It seems to last about 5 months. We didn't notice as much of a difference as we did when he was casted but we did notice when it wore off how much it worked.

I don't know exactly where is spaticisty is so I don't know what other options but you can ask about phenol

Luke and Erin said...

All good to know! Thanks!