Botox for external rotation & supination (esp for infants & toddlers)

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Adrienne
Posts: 29
Joined: Thu Aug 10, 2006 3:08 pm

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by Adrienne »

My son is now 17 mos (on June 1), and he does the army crawl mostly, but when he feels like it can get up on all fours, although he fists with his left hand instead of keeping it flat.

Because they weakened his triceps (the effects can last about 4-6 months), we used braces which basically took the place of the weakened triceps to help strengthen his biceps which were weak. When using the braces, he was able to crawl on all fours.

I don't think the botox had anything to do with his crawling, but more of the shoulder issue he had. He's still not walking, but is pulling himself up and cruising.

We had shoulder surgery done on him Tuesday, so we'll see once the cast comes off and he goes through therapy to see how his shoulder is doing.

Feel free to e-mail me any other questions, or you can post here :)

Adrienne
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F-Litz
Posts: 970
Joined: Fri May 26, 2006 6:53 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
Location: Ambler, PA

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by F-Litz »

I am just curious but are there any long term studies on what the result of injecting botulism into children is? I know they've been doing it a long time for CP kids - but is there a limit on how much they can inject per lifetime? guidelines for how much to inject at one time? anything published about this anywhere?
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marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by marieke »

A friend of mine who is a doctor sent me an article and in it it stated that the max for children should be 12 UNITS/KG per visit, which should be at a minimum of every 3 months.

There are no long-term side effects from Botox based on a 10 yr study... it does not change the muscle permanently either.

Marieke (31, LOBPI)
(I had Botox done on my leg for spasticity.. so far so good)
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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F-Litz
Posts: 970
Joined: Fri May 26, 2006 6:53 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
Location: Ambler, PA

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by F-Litz »

Thanks Marieke!
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marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by marieke »

just an FYI... for adults the max dosage is much higher...

Marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by katep »

Adrienne made a very good point. A subluxed shoulder is going to be MUCH more incompatible with crawling than weakened triceps, which can be braced. But a shoulder which is posteriorily subluxing will be very difficult to crawl on "normally", and the child will be less likely to want to weightbear in a crawling position, which would just further exacerbate the instability.

If given a choice, I would do all I can to correct an internal rotation contracture/posture. That is a higher priority than crawling. Excessive internal rotation will deform the joint, but many children skip crawling altogether without permanent damage.

Kate
Adrienne
Posts: 29
Joined: Thu Aug 10, 2006 3:08 pm

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by Adrienne »

Exactly. Christopher (my son) has/had a subluxed shoulder which he just had corrective surgery for. His humeral head was slightly malformed which was making his shoulder blade (scapula) "wing", and not allowing him to come up higher than 90 degrees with his arm. Because of the mispositioning of his shoulder, he didn't/couldn't put the correct pressure on his arm to crawl correctly.

Think of it this way... a normal shoulder socket looks like an ice cream cone with the ice cream on top. From what we saw on the MRI, Christopher's shoulder had the ice cream at about a 10:00 position, so he couldn't get correct positioning unless he was braced and the shoulder was "put" into position.

We initially did the botox to get him to bend his arm at the elbow and put his hand to mouth. Prior to this he was getting to his hand to his mouth by coming from the side which is because his triceps and brachial radialis were much stronger than his biceps, which was needed to get the correct motion. He was going to get a 2nd round of Botox, but Dr. Brushart (from Dr. Belzberg's team) said if he's still doing the hand to mouth the correct way, then it's not necessary.

If you'd like, I can give you Dr. Belzberg's information. He was extremely nice and spent over an hour with us both times we've seen him, and would like to monitor his progress even though we've done the surgery with Kozin. He's pretty honest about whether surgery is needed or not, and we felt comfortable with his information because he was a neurosurgeon familiar with this type of injury where the others (Waters, Kozin, Nath, Grossman, Price) are Orthopedic Surgeons.

Hopefully this sort of makes sense :) Feel free to e-mail me if you want to chat about it - agnj@aol.com.

Adrienne
BPI mom
Posts: 16
Joined: Tue May 22, 2007 2:26 pm

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by BPI mom »

So it sounds like most everyone was glad that they did Botox. Was anyone unhappy? Do you know what the primary reason is that they limit the dose on Botox? What kind of bad effects could happen? Any chance that it won't wear off and you might have a permanently weakened muscle? THanks.
BPI mom
Posts: 16
Joined: Tue May 22, 2007 2:26 pm

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by BPI mom »

Kate,

Sorry, I just reread your post and now I'm confused. What is a subluxed shoulder? I don't think my baby has it. Do you mean that she may develop it if she gets botox?
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marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Botox for external rotation & supination (esp for infants & toddlers)

Post by marieke »

They limit the dosage because too much can cause paralysis or systemic muscle weakness, BUT done by a liscensed doctor this is not likely to happen.
There are no long term effect and will not be permanent. It wears off after 3 months, in some people after 5-6 months, even if overdosed.

"Intramuscular injection of the neurotoxin complex blocks cholinergic transport at the neuromuscular junction by preventing the release of acetylcholine. The nerve endings of the neuromuscular junction no longer respond to nerve impulses and secretion of the chemotransmitter is prevented (chemical denervation). Re-establishment of impulse transmission is by newly formed nerve endings and motor end plates. Recovery after intramuscular injection takes place normally within 12 weeks of injection as nerve terminals sprout and reconnect with the endplates."
http://emc.medicines.org.uk/emc/assets/ ... mentID=112
Marieke (31, LOBPI)
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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