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botox for post concussion syndrome?

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Unread 04-09-2007, 11:26 PM   #1
michellecutloose
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Join Date: Apr 2007
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Help botox for post concussion syndrome?

My 10 year old son recieved a concussion sept. 16th 2006, 7 months later he still has headaches daily, by feb 2007 he was able to attend school 3 hrs a day. our ninth doctor who is a tbi specialist suggested botox injections. i think it was the biggest mistake ive ever made, besides letting him play football in the first place. the shots have set him back to almost the beginning only now he is nausus all the time with his headaches, one hit to the head not even knocking him out, is tearing our lives apart, i live in the 4th
largest city in the u.s. 5 minutes away from the biggest medical center in the country and no one can help him. it also seems to have weakened his immune system he is on his 4th bout with diarreha feeling like he's gonna throw up. the doctor says the botox could not make him worse but there is no other explanation. we've seen 2 nueroligist,nuerosurgeon, nuero-phsycologist,neuro optomtrist,ent docs sports doc,tbi specialist had mri,cat scan, both showed nothing. My son is now 11 tries to stay positive. I promised him I would not give up on trying to find help, but I'm running out of options and the docs are just blowing me off because they feel helpless too. My son was an honor role student and an active child now he has gained about twenty lbs. and is as smart as ever but cannot go to school or do much because of the pain and being wiped out. Does anybody out there have any suggestions?
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Unread 04-10-2007, 09:43 AM   #2
Nancy F
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Hi,
I am very sorry to hear about all your troubles. It sounds like you have gotton all the professional advice there is on this post concussion delemna. I am also a mother trying to problem solve for my son who is 16 and had a concussion from wrestling in mid February, he has been dizzy(primary complaint), light headaches that seem to be localized to where his injury was,has difficulty falling asleep. He is slowing regaining mental stamina and is able to do more and gets less symptomatic with light activity. We are being advised to listen to the symtoms and back off if they creep back. He is going to school but doing no homework, tests or exams. My gut feeling after reading, listening to others with the problem and tuning into the experts is that the prognosis is good and that the patient will get better but it is SO HARD TO BE PATIENT! You and your son have really had to wait a long time. I hope he will get better soon and please keep us posted on progress.
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Unread 04-10-2007, 10:48 AM   #3
Nancy F
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One question, why botox? What was the rationale?
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Unread 04-10-2007, 02:23 PM   #4
moose53
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Michelle,

It says here that botox can be used for migraines, but, "While the existing studies have shown that some people do benefit from low-dose Botox injections, the response rates to Botox are still unknown and it cannot yet be considered a standard treatment for headache":
http://www.uni.edu/walsh/neuro99.html (01/29/2007)
http://www.achenet.org/articles/24.php

I don't have any experience with traumatic brain injury, other than I have a friend on BrainTalk with TBI. But, speaking from my own personal experience with the medical community, I wouldn't accept a non-standard medical treatment for a 10-year old.

You said that they did an MRI and a CT scan. Have they checked his neck and his brain stem using these technologies?? Have they done a PET scan to narrow down where the activity is coming from??
http://www.treatment-options.com/art...5&Type=Article

There's TONS and TONS that's not known about TBI. I just got interested in it because of my friend. I've started keeping bookmarks: http://public.murl.com/moose53/HEALT...N_INJURY_(TBI) (press the [page-down] key two times to get to the appropriate section)

There used to be a pretty good traumatic brain injury group on BrainTalk. But, they crashed last year and a lot of the history is gone. Although, most of the links are in my bookmarks.

Read this and see if it gives you some ideas: http://www.tbiguide.com/index.html

I don't think we have a TBI group here at NeuroTalk

There is one over on BrainTalk -- post there and see if you can get some help http://brain.hastypastry.net/forums/...play.php?f=269.

Get in touch with Chaplain Patrick -- you can find his address in the 'links' on this website: http://web.mac.com/lamontglen/iWeb/B...n/Welcome.html He used to be a member of the TBI group on BrainTalk. Don't think he is a member anymore. He's got a lot of good connections around the country. Ask him for some help and some suggestions.

You're doing EXACTLY what you need to be doing -- you're standing up for your son. Doctors -- way too often -- don't fight for kids the way that they should. You'll be an "expert" in this by the time you get something done for your boy. But, you WILL get some help for him. I believe that.

Stay strong. And keep fighting. Hugs.

Barb

PS: Here at NeuroTalk, we have a Child's Health forum http://neurotalk.psychcentral.com/forumdisplay.php?f=9

and over at BrainTalk, they have a Child Neuro forum http://brain.hastypastry.net/forums/...play.php?f=115 This one has a lot of parents with brain injuries from birth, problems with epilepsy and other sorts of things that cause headaches. If you can't get some help on any of the TBI forums, this would be a real good resource for help and support.

I know how hard it is to watch a child suffer and feel like you're not helping.

Oh, one last thing: if you, as the parent, have a "feeling" about the botox, then that "feeling" is probably right. I already told you my "feeling" about it. It's not been researched enough. I would put it at the top of my "not to use anymore" list.

More hugs.
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Unread 04-11-2007, 05:21 PM   #5
michellecutloose
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Wow barb thanks for all the info, I have enough to keep me busy for days. you know you get to the point where you'll do whatever you can just to ease their pain, and because it's such a rare situation you don't know where else to turn. Thanks for your advice, I'll keep you posted.
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Unread 04-11-2007, 08:18 PM   #6
janet
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I have trigeminal neuropathic pain (long story) - Tried two "rounds" of Botox in my face (along 5th branch trigeminal nerve) - I tried this "new TX" even though the study trial was in Brazil on 15 pts. It did not help me. I agree, it set me back and it took a lot of time, prayer and medicine to regain the ground I had lost. I agree with another post - Your "feelings" are probably right. One thing that has helped me tremendously - keep a daily journal. That's been the only way I've been able to justify my "feelings". It will also help you see the progress your son will make. God bless.
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Unread 06-02-2011, 09:20 PM   #7
rissma
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Join Date: Jun 2011
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Default botox for post concussion headaches?

Hi,
The neurologist I see today suggested botox for the daily headaches
I have as a result of post concussion syndrome. I have had these
headaches for 6 years now since falling off a ladder and hitting my
head on cement. We have tried several types of medication but
the headaches still continue on a daily basis and all the medication
does is mask the headaches until the med wears off.
I am very wary of botox for many reasons and am wondering if
anyone out there has any thoughts on this. I am a 50 year old
woman who is tired of the constant pain. I welcome any ideas?
Thankyou so much.
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Unread 09-16-2011, 11:52 PM   #8
Shasta50
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Join Date: Sep 2011
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Default Dicyclomine, a smooth muscle relaxer may help PCS

Greetings, I'm new to the board. My Dr. just suggested Botox; I'm a researcher with PCS. I was wary of Botox and my research has shown me to be correct. that's how I found this site. In June, by accident, I found that dicyclomine took away an 18+month headache I sustained after a fall resulting from a burglary. I still have headaches and use a chiropractor who can adjust my head and upper palate as well as the more common spinal adjustments. But thay are not as brutal as they were; I can actually think and move without head pain now. Dicyclo is not expensive and while everyone keeps telling me its not for long term use, they keep letting me use it. 20 mg 4/day. It does have a sedative side effect so I don't always use it 4 times a day but it works. The theory is that, since it's a smooth muscle relaxer, it relaxes the muscles in the neck and allows more blood flow to the brain. My research has found nothing to contraindicate this theory. Botox on the other hand threw up a bunch of red flags. Since is paralyzes muscles it seemed antithetical to the way dicyclo works. In less than an hour of research into botox and migraines/PCS I've decided that the risks far outweigh the potential benefits of this treatment. I was an FDA Investigator. Just because something is approved by the FDA doesn't mean it's safe. I'll be doing more research on this issue and at some point I'll write an article for my blog about it. Are we allowed to give resource sites? I'm going to take the risk and say check*edit*at some point. Also, my doctor is recommending methadone as a safe alternative to narcotics for chronic pain. I was badly and permanently injured. I'll be checking that out too. I set my initial profile to not receive emails. I'm not generally active on discussion boards. I may come back to this board for more info at which time I may actually put up a profile and change my em status. This site helped me make a very important decision re: botox. In my highly weakened state, I think it would be a disaster. If you use nutritional supplements, are you aware the FDA is trying to crush the industry with new and unnecessary legislation? There is a lot of info on my site; I collect no info about you if you just read; and I don't spam folks if they leave a comment. I'm a public servant. My info is free; my concerns are for our health. sorry: but the FDA law is not a good one. I'll make a note to come back and post info on methadone when I find it; I'm going to try this avenue unless I find something truly horrible in my research; I don't think I will; I've inspected methadone clinics; it seems fairly benign as pain treatments go. *edit* Blessings. Shasta

Last edited by Jo*mar; 09-17-2011 at 12:47 AM. Reason: per guidelines on new member linking / promoting another site
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