[lucinda]

much too soon for my liking. It wasn't very long ago that I was told Matt would likely never require botox but today I was told that he needs it.

She did give me three months using the AFO with night strap 24/5 and doing 20minutes of daily stretches to see if we can regain range. If not, then I will at least agree to the consult.

so, i get a break from seizures but move on to this instead. blech!

Also, i spoke to the OT hoping she'd say Matt's printing was fine (and it is in some senses) but she still thinks he'd benefit from the writing clinic.

Now i'm nervous to go for the neuropsych testing. I was feeling so good I thought of cancelling it but am no longer so sure.


sigh.

lucinda

[AnnieCB]

Livy saw her physiatrist yesterday and we too heard that it is time for botox. I was planning on posting here and asking for info. I've heard it can be very painful. Anyone who has gone through it care to share?

[PaulaScott]

We did Em's first round of Botox in May and she did fine. They used EMLA and a tiny needle for the actual shots and she was mad, but mostly because of being held down, not due to the shots.

We didn't notice any pain at the time or immediately after (and Em, though non verbal, lets us know when she hurts), but about three weeks after, she had some sort of spasmodic episodes that lasted for about 3 days and disappeared as quickly as it showed up. Whether or not it was linked to the Botox, we will never know. The Botox did have the desired affect of loosening up her adductors with the help of the SWASH brace.

Em is going in for round 2 next month, this time for ankles and hamstrings and will be getting new AFOs as well. I'm not quite as nervous this time.

[swift]

I have Botox every few months. I find that it stings for a short while after, but apart from that it's like any other intra-muscular injection in that the 'tighter' the muscle being injected is, the more sore the actual injection is going to be (and unfortunately I can't relax those muscles to save my life!).

That said, I can convince myself to hold still because I know what improvements will happen. I also found that some positions were better than others in terms of trying to get the muscles to relax just a little bit more.

HTH
Swift

[lucinda]

well, for us, the PT said that their experience with children around 7/8 years of age with mild cp is that the botox usually lasts at least one year, particularly if followed by serial casting.

I was shocked that my husband listened attentively to my relaying the PTs thoughts and said he preferred we didn't (naturally) but nothing strong. He also asked what else HE could do...eg. would taking Matt for massages help? Would getting him exercising more -like walking on a treadmill- help?
I think that is one of the few conversations he responded to me so positively. He's a great guy but tends to shut out anything medical if he can.

anyway, time will tell. Although botox can be painful I'm more worried about it because of how Matt reacts to meds. 1 gravol knocked him completely out for 3-4 hours. Minimal doses of seizures meds are like high doses to him and he has MORE but off meds he does better. etc. So, i'm not sure how to determine the right amount when he acts that way so that he won't go too loose.

will cross that bridge

lucinda

[swift]

One of the good things about Botox is that it's not systemic - it generally only affects the muscles around the injection point (so whilst they do sometimes have to play with the dose a little, it's not quite the same as with meds that affect the whole body).

Did the PT say whether anything else might help? (like weight-bearing with corrected alignment - which obviously depends on a lot of things).

xxx
Swift

[DystoniaGal]

If you have concerns over what kind of reaction he might have. Some places do a test shot to see what kind of effect it will have and a few weeks later they will do the actuall injections. So that might be a suggestion.

[Tracy Sheppard]

MEgs has botox every 6 mos in her arms and in her shin area. She usually gets 14 injections. Our ortho surgeon sprays a numbing spray on 1st and it literally freezes the area. Megan doesn't even flinch. Megs has had 3 rounds so far and no side effects. I do hope your experience is as pleasant as ours has been. I too, was worried about it being painful. With our doc and the way he does it and it is done so quickly Megan has done great! Good luck
Tracy

[momster]

I'd like to say our son's experience was as pleasant as the others..............
Our doctor has used emla, but also sedates Benj. And he still cries and struggles. It is clearly painful for him, even very drunk (and I do mean very - last time I nearly had to carry the kid to the car).

Benj is scheduled to be serially casted for his next treatment (believe it or not, 7/07) if we go through with it. Our experience is that it kicks in very quickly (with in 24 hours) and only lasts about 6 to 8 weeks. I feel it's helped to some small degree - it is really a cost benefit analysis each time in deciding if the discomfort of treatment and the time off from school for a day, plus the effort of trying to get good OT services post botox is worth it.

Hope it all goes well!!

- momster