Anyone use Topamax to treac tics?

[Dedee]

We took our son (who has PANDAS) to see a "wonderful" neurologist last week. She spent alot of time with us, explaining tics, OCD and the relationship to strept. Of course, I had already read everything and more that she was telling me. She agreed that we actually were seeing a decrease in his tics with the antibiotics and I was starting to get excited that finally someone believed me. She listened when I said that I did not want him on Abilify with it's side effects and that I felt that because of his PANDAS, antibiotics were the "medication" for him. I asked about switching from amoxil to Azith to see if we could clear up some remaining symptoms he has. So she tells me her plan is to start him on Topamax and slowly increase this medication. It has no bad side effects like the other "antipsychotic" drugs, will not cause drowsiness, or weight gain, ect.., new to treating tics. She would like to have him on it for a couple of months then start to gradually wean him off the antibiotics. Now, I know about Topamax in that I take it myself for migraine prevention. I also admit that personally, I have had few side effects and it has worked well for me. However, we are talking about a child with PANDAS. Am I missing something here? How is taking him off antibiotics going to treat the under lying cause which is the elevated strept titers? I know I should have jumped in and asked her that question, but she didn't seem the type to appreciate her plan being questioned if you know what I mean.

 

So now here I am trying to decide what to do. I have not started him on the Topamax. I have two more months worth of Amoxil left before I have to find someone to treat this sweet boy. I have our name on the waiting list to see Dr. Murphy in Florida (10 hr drive) but really do not know when that may develop. Looks like around April or May. He is doing pretty well really since the tonsillectomy. I just think we could clear up some remaining tics and anxiety issues with the right antibiotic and I am worried about running out of the current prescription. I have started probiotics, and a cal /mag supplement. He has always taken a multivitamin.

 

What is the general consensus on the Topamax for PANDAS? Love your opinions...

 

Have a good week-end -

Dedee

[Guest]

Hi Dedee,

 

I can't find any records of me ever taking Topamax for tics, but I want to encourage you to not go this route. I don't see what an anti-seizure med would have to do with PANDAS related tics/symptoms. I think the wait to get your son into a good PANDAS doctor/clinic would be well worth it rather than resorting to Topamax or any related medications.

 

Carolyn

[Chemar]

I absolutely agree with Carolyn, Dedee

 

an antiseizure medication to treat tics induced by streptococcus infection is IMHO a VERY strange treatment route and I would have to wonder if this neurologist actually knows anything about PANDAS??

 

the ONLY really fully effective treatment for PANDAS is prophylactic antibiotic use, preferably with azithromycin (zithromax)

 

Introducing a medication like Topamax is beyond my ability to comprehend??

did she explain why???

[kim]

Chemar/Dedee,

 

Her Dr. is suggesting this because, I believe, it's still the "official" recommendation.

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

Q. Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

 

A. Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn?t enough evidence to recommend the long-term use of antibiotics.

 

and

 

Q. What are the treatment options for children with PANDAS?

 

A. The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.

 

 

Now does that statement in the first paragraph make any sense to anyone? If the bacteria is eradicated, wouldn't it follow that the body would stop producing the antibodies, that are creating the problem?

 

Dedee, I thought this article was really informative regarding Topamax.

 

Topamax (topiramate) - The Good, The Bad and The Funny. From ...A user's perspective on Topamax (topiramate), including common effects, side effects and warnings.

 

http://www.crazymeds.org/topamax.html

[ad_ccl]

Hi Kim,

 

I think the problem is that the antibodies that are produced at such high levels - continue to believe there is still an infection in the body (even when it has been eradicated) - due to the molecular mimicry - and the area of the brain (basal ganglia) presents itself the same as the infection so the antibodies attack it. So -- the body of a PANDAS kid still thinks the infection is present - so the antibodies remain at high levels - then comes PITANDS, any form of illness, viral or even allergy - then kicks these already high antibodies into action - and they begin to attack the brain again due to molecular mimicry and the antibodies believing they are actually attacking the strep. Does that make sense, that is my understanding anyway. That is why I think the azith works so well - it is acting as an immono modulator - perhaps dampening the response of the antibodies in general - while also preventing more bacterial infections, given the body a break. Azith is being researched for its use as an immuno modulator with CF patients and asthma patients.

I am no doctor - but through the years this has come to be my understanding.

 

As I have said so many times - azith has been life changing for our PANDAS son.

 

I would stay clear of other drugs - unless it is really a last resort - this summer when all the other antibiotics were not working, and we were already doing the food/vitamins etc - I would have gone to other drugs - as the way he was he could not function in a classroom - a couple days on azith - and he was 100% tic free and as happy as a clam!

 

The quotes you posted are the exact same one's that were there 3 years ago when we started down this path - I think the research continues - and hopefully soon there will be a better understanding of what works for these kid.

[kim]

Alison,

 

I couldn't agree more with the statement about modulating the immune system. I'm not familiar with the research regarding azith. in this area, but the DAN community, is trying to do the same thing, with many treatments.

 

I had never thought about the mimicry aspect, resulting in high antibody levels. That's interesting, but I wonder if you could comment on something I find confusing about that.

 

When they test ASO and anti DNASE levels, are those things not produced by the strep, itself? If it were a matter of the body responding to the brain, would those titers still be elevated?

 

Also, any thoughts on this (from a thread on Braintalk)

 

http://brain.hastypastry.net/forums/showthread.php?t=2012

 

Swedo and colleagues propose that in PANDAS somewhat lower levels of enzyme activity than seen in chorea may contribute to OCD symptoms. Although how the antibodies cross the blood-brain barrier remains a mystery, the researchers say the new findings provide insights into how antibodies against strep may disrupt neuronal communications and cell function.

 

I had been looking at some studies regarding aluminum, increasing the permeability of the BBB recently, in regards to something else. When I saw this remark, it sort of made me go hummmmm

[faith]

I'm just gonna throw something wild out there. Just something I've always been curious about, and with all the talk of strep A.

 

Has any mom here tested for STREP B positive when they were pregnant? This is a common test done with a swab in vaginal area in last trimester. If you are positive for it, than you will be treated with antibiotics during labor to prevent being passed to the baby. Group B strep is common in the flora of the body and is not harmful, but apparantly can be to a newborn.

 

I know this is probably in left field and probably doesn't have anything to do with all this, but, hey, you never know! It's still strep, right? Maybe all the research leading to the PANDAS was concerning the Group A strep, and I'm wondering if this (the Group B strep) could be a factor in those who are not Group A strep positive (and high ASO titres). I wouldn't know where to begin on this one, but, I don't know, I know I had that (positive culture) when pregnant with my son, and just wonder...

 

If any of you remember, I'd just be curious to know.

 

Regards

Faith

[Chemar]

hey Kim

great research as always!

 

yes, I know the archaic suggestion is still there on NIMH re meds for PANDAS, but I still dont see why this neuro feels TOPAMAX would work?

 

 

as an aside, noting that suggestion on fluoxetine (prozac) on the NIMH site here is a link to a discussion on NeuroTalk re those types of fluoride containing drugs (and fluoride itself) being thought to be responsible for the rise in fibromyalgia

 

http://neurotalk.psychcentral.com/showthread.php?t=13427

[kim]

Well Cheri... you must have missed the phase 3 trial! When there's a Pharma drug, that might help control symptoms, why bother with the source???? Better yet, just give it a try, what can it hurt? I'm sure that the neuro has done the tests referred to here.

 

An Open-Label Study to Determine the Efficacy and Safety of Topiramate in the Treatment of Tourette Syndrome.

 

During this visit, a blood sample will be taken (approximately 3 teaspoons) and tested to rule out any abnormalities and to make sure that your liver is working properly and your electrolytes are normal. You will also be asked to answer questions for the scale that measures your symptoms, if any, of attention deficit hyperactivity disorder (A-D/HD). If you have Bipolar II Disorder, you will be asked to answer questions for one scale that measures your symptoms of mania. If you have obsessive-compulsive disorder (OCD), you will be asked to answer questions for one scale that measures those symptoms. The study doctor or his staff will complete two scales that assess the severity of your condition.

 

http://druglib.com/trial/36/NCT00206336.html

 

As a side note, these kids start giving us problems so early, sometimes it's best to just get them on 2 or 3 drugs, right away

 

http://www.nytimes.com/2007/02/15/us/15bip...&ei=5087%0A

 

DeDee, I'm sorry to use your thread to sound off here. I have kind of taken a break from posting, because I've been having a hard time controlling my attitude lately. It seems like I've hit a wall with being objective. The more I learn, the more disillusioned I become, with everything I once believed. Interestingly enough, fluoride and infant soy formula (revisiting) just about did me in! Still working on my youngest sons protein adversion, sugar and carb cravings, and his reaction to oral B12.

The fact that soy beans are acid washed in large aluminum vats, and are know to contain 600 times the amount of alum of breast milk (but what could that possibly hurt?) almost bought my lap top a one way ticket through the french doors, and that was one of the better features of soy! When I have the mental energy, I'll start a thread.

[Chemar]

I hear ya Kim...I hear ya

 

[Cum Passus]

Faith,

 

I was positive for strep B while pregnant with my son too. He has never had strep throat. He did have his titers checked and the Dr. said it was in the normal range. I didn't ask what # it was.

 

C.P.

[kim]

Thank you so much Cheri, you don't know how much that one sentence and a hug helps.

 

I see I messed up the second link in prior post. This is the one that was supposed to go there. I can't seem to get this to open when I copy it??? This little girl was 2 years old when these meds were started.

 

http://www.nytimes.com/2007/02/15/us/15bip...&ei=5087%0A

 

excerpt;

 

The case has shaken a region known for the excellence of its social and medical services. The director of the state’s Department of Social Services has had to defend his agency, which had been investigating the case before the girl’s death.

 

The girl’s treating psychiatrist has taken a voluntary, paid leave until the case is resolved. And New Englanders are raising questions that are now hotly debated within psychiatry, and which have broad implications for how young children like Rebecca Riley are cared for.

 

Tufts-New England Medical Center, where the child was treated, released a statement supporting its doctor and calling the care “appropriate and within responsible professional standards.”

 

Indeed, the practice of aggressive drug treatment for young children labeled bipolar has become common across the country. In just the last decade, the rate of bipolar diagnosis in children under 13 has increased almost sevenfold, according to a study based on hospital discharge records. And a typical treatment includes multiple medications.

 

Rebecca was taking Seroquel, an antipsychotic drug; Depakote, an equally powerful mood medication; and Clonidine, a blood pressure drug often prescribed to calm children.

[Dedee]

Thank you so much Cheri, you don't know how much that one sentence and a hug helps.

 

I see I messed up the second link in prior post. This is the one that was supposed to go there. I can't seem to get this to open when I copy it??? This little girl was 2 years old when these meds were started.

 

http://www.nytimes.com/2007/02/15/us/15bip...&ei=5087%0A

 

excerpt;

 

The case has shaken a region known for the excellence of its social and medical services. The director of the state’s Department of Social Services has had to defend his agency, which had been investigating the case before the girl’s death.

 

The girl’s treating psychiatrist has taken a voluntary, paid leave until the case is resolved. And New Englanders are raising questions that are now hotly debated within psychiatry, and which have broad implications for how young children like Rebecca Riley are cared for.

 

Tufts-New England Medical Center, where the child was treated, released a statement supporting its doctor and calling the care “appropriate and within responsible professional standards.”

 

Indeed, the practice of aggressive drug treatment for young children labeled bipolar has become common across the country. In just the last decade, the rate of bipolar diagnosis in children under 13 has increased almost sevenfold, according to a study based on hospital discharge records. And a typical treatment includes multiple medications.

 

Rebecca was taking Seroquel, an antipsychotic drug; Depakote, an equally powerful mood medication; and Clonidine, a blood pressure drug often prescribed to calm children.

[Dedee]

Thank so much for everyones input. To answer some of your questions, Topamax is an antisiezure medication, which I think the posted articles ( thanks!) demonstrate, is in the early stages of being tested for use in controlling tic disorders. The neurologist said she had seen great results with few side effects. But again, I think as you all have said, it all comes back to the fact that this child is a PANDAS patient and requires specific treatment. It is just so frustrating that I have now been to both a ID and Neuro and both agree that he definately has PANDAS, but neither will agree to long term antibiotic treatment. His pediatrician wrote me a few months worth till I could see the neurologist and said we would go with her recommendation. Is it just that they really don't understand how to treat this? I guess there really isn't enough documentation to make it well known. I mean these are supposed to be some of the best doctors in our state. It is really scary. My husband is losing faith in my opinions even though I have shown him every article and made him read them. He is the type that just wants to do what the doctor says, because he thinks they know what is best. This battle gets harder every day.

 

Thank goodness my son isn't struggling to bad right now. While on Amoxil he only has a few eye blinking tics left and some throat clearing that no one else would really notice. He also has some sleeping issues that cause problems at night that we are working on with supplements. When really stressed he will still burst out in tears, but it is better than before. I just think if we were on the right antibiotic some of this might clear up also.

 

Well, again, I appreciate all the input and articles that were posted. I have not started the topamax. I am holding out hope that we can get our appointment with Dr. Murphy before our antibiotics run out. I am not sure how we will manage that trip with three kids and keep our sanity, but all we can do is try.

Hope everyone has a good week.

 

Dedee

[kim]

Dedee,

 

Is it just that they really don't understand how to treat this?

 

I just have to wonder, if they are afraid to recommend the antibiotic use in too many kids. You have to remember, EVERYTHING is about what's good for the "herd." and profits Hey, who added that???

 

Someone posted an article recently about amoxicillan being effective about 75% of the time on strep. I remember the boys Dr. telling me that amox. was "just like water on a fire," with strep. Along about the 3rd positive culture, they would finally give us something else. I think they may be more comfortable using the drugs, not many of us are real fond of, and hoping the kids outgrow it, than chancing a strain of strep, that is highly resistant to the antibiotics that we have now?

 

If I had it to do over again, I would rotate every natural antibacterial I could find, and loads of probiotics. I do want to say though, we never had the "explosion" that is assoc. with PANDAS. If that had been the case, I probably would have looked for a "street dealer" of Azith, if I would have had to. I wonder if there is any such thing.

 

Seriously, I can only imagine, how frustrating this must be for you.

 

Have you checked out any of the PANDAS threads or suggestions here, by any chance?

 

http://www.ch3nutrigenomics.com/phpBB2/welcome.html