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Willa
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| Posted: Oct 11 2007 at 8:56am | IP Logged
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My 8yo Aidan just got evaluated for Botox injections for his leg and arm (he has mild CP which affected his left side, so he has extra tone in those extremities).
I wondered if anyone has had experience with Botox injections (for hypertonic children) and how it went. What were the results, and so on.
The doctor recommended PT twice a week for at least a month which is quite a step up from monthly. I guess the goal is to retrain those muscles while they aren't firing off so arbitrarily -- so even though the Botox wears off after 2-3 months, they hope there will be long term good results.
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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wamegomom
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| Posted: Oct 11 2007 at 10:06pm | IP Logged
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Oh, Willa, I pray that Aidan has the excellent results that my dd Jane has from Botox. She also has C.P. and we have found the botox to be a real benefit. You should notice maximum weakness around 2 weeks post injections in the muscles that are injected. If a lot of sites are injected, a few kids can get some loose stools, but Jane never did. The reason you go like gang-busters with the frequent physical therapy right afterwards for a couple of months is that the botox causes the spasticity to significantly lessen so that you CAN strengthen the underlying muscles without the spasticity getting in the way. While, unfortunately, the spasticity returns slowly because that is a lifelong condition for our kids, they do not lose the muscle strength and tone gains that they achieved while the spasticity was temporarily gone or lessened. It is liquid platinum to us (ok, and it costs that, too!)
It simply amazes me that a toxin that could kill you if you ate it can help Jane so very much. Jane's orthopedic surgeon in Kansas City has incredible successes with botox for most of "his" C.P. kids. It burns like crazy to inject so the kids are given IV sedation but that has never been a problem. She has had various muscles in her left arm, both legs, and her lower back injected. A couple of times he's injected near her spine so a radiologist is in the room to check placement of the needle before the botox goes in. It's always been fine. It is an outpatient procedure. We've been going to St. Luke's in K.C. and then about an hour after she arrives in the recovery room, we head out to the Plaza to P.F. Chang's for a special lunch.
Our insurance, Blue Cross/Blue Shield, requires pre-approval before the botox injections since it is such an expensive procedure. You might check with your doctor's office, as they would know what you need to do. You sure don't want to go ahead and have it done, and then be denied, as I've heard has happened to a few families with other insurance.
PM me if you would like to chat on the phone. From our experience with Jane (who was adopted from China at age 8 1/2, began botox at 9 and gets it once or twice a year at age 15) we're big Botox fans!!
Let us know how it goes and Aidan will be in my prayers (I love that name!)
Mary Alice in Kansas
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KASB
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| Posted: Oct 25 2007 at 9:15am | IP Logged
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My daughter has cerebral palsy and took oral baclofen for a couple of years, but the results were not worth the side effects. We had asked about the botox injections, but her orthopedist at the time didn't think that was the way to go and recommended the baclofen pump instead. She did have testing done for it, and the results were positive, but due to several factors she never had one put in. She's having a lot of pain due to her spasticity and we've been trying to decide what options we should pursue. Mary Alice, I'm curious as to whether the pump has ever been an option for your daughter. I would think Aidan's other medical issues would rule it our for him.
Also , Mary Alice, we drove through Wamego back in August on our way home from Colorado. We were stationed at Fort Riley years ago and wanted to show our younger children the Old Dutch Mill. I wish I would've known to look you up !
Kym
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wamegomom
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| Posted: Oct 25 2007 at 9:26pm | IP Logged
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Kym, my understanding is that baclofen pumps have their own side effects that can be troublesome for some folks. Botox has had no side effects for Jane. Gosh, Kim, can you maybe check with another orthopod? Jane's doc, Ganesh Gupta in Kansas City, has had so much success with it that he's doing more Botox than surgery right now, even tho he's a board certified orthopedic surgeon. I wish you could see him--he's so wonderful.
It is so sad that your dd is having pain. Do you have an NDT trained physical therapist in your area? They are so terrific and might be able to make a big difference for your dd. Honestly, if I were you, I'd check around for another doc willing to try botox. Some doctors just don't want to do it because it's relatively new for spasticity. Several docs here flat out refuse and will only do traditional therapies, but Dr. Gupta has helped Jane so very much.
Please do contact me if you're ever in the area again. I'd love to meet you! And our house is totally accessible.
Mary Alice in Kansas
p.s. How old is your dd?
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CrunchyMom
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| Posted: Oct 26 2007 at 7:44am | IP Logged
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That sounds like a good alternative to the baclofen pump. My brother (who is 22 and has severe CP) had one put in several years ago (I almost wrote the word installed, lol--my brother isn't a car!). It really had good results in the beginning, but his trunk was already loose (I forget the word, the opposite of spastic, and my brother is the combo of the two); so, his mild scoliosis that had been somewhat in check by the spasticity worsened, and he had to undergo major back surgery with insertion of metal rods. He still has problems keeping his neck straight (which also stems from his lax attitude about doing the prescribed exercises, and he's 22 now (supposedly old enough to decide for himself what to do), and my mother passed away last year and is no longer there to "force" him, er, I mean encourage him  , but I digress...).
So, anyway, my point is that the botox sounds like an improvement over the baclofen since it can be localized to the muscles that need therapy. I think the concept was good, and my brother did benefit from the baclofen (rather, he may still benefit from it, I think he still has the pump), but if one could have some of the benefits without the potential side effects of the baclofen, it sounds like a good alternative!
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Willa
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| Posted: May 05 2008 at 4:54pm | IP Logged
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Mary Alice and all,
I just wanted to update on Aidan's Botox. The injections were astonishingly easy for him to cope with -- four in the leg and 2 in the arm. He only got EMLA which has never had much effect in the past, but this time either it worked, or the lack of feeling in his left side made it easier than one would expect.
Anyway, the results have been extremely good. It has been three months since the injections, so it would be wearing off around now, but he still has better function in both his leg and his arm.
I am not a very big interventionist type person but this is something I would do again. Now, right after Aidan got the injections, the news story came out that a few people had died after receiving botox injections. There is a bit of information here From what Aidan's PT said, all the deaths were associated with extremely high dosages of the drug -- 400-600 units rather than the 40 or so units they used with Aidan.
So if you ever are looking into botox injections for cerebral palsy it is probably a good idea to check your clinic's dosage range.
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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wamegomom
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| Posted: May 05 2008 at 9:54pm | IP Logged
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Willa, I've been keeping your family in my prayers and am glad to hear that Aidan had such good results. You are spot on about the dosages.
I think having an experienced doctor is another important factor. Some docs who haven't much training in this are jumping on the bandwagon and don't know what doses are safe and effective.
I'm sure that it was a challenge with gas prices being what they are to keep hitting the physical therapy so hard, but you can see how it pays off. Hooray for Aidan!!
Mary Alice in Kansas
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4Real Forums : Special Blessings
Topic: Botox injections ?
