2 questions

[Broo100]

Hi everybody. I am happy to report that my ds 10 is doing great. I am watching him carefully and swabbing his throat every couple of weeks to be extra vigilant. He is off antibiotics and used Anatabloc whenever he gets tics. I had 2 questions. First, do any other Pandas kids here display tics but no OCD signs? At the height of his exacerbation my son had very bad motor and oral tics, distress and inattention but no traditional OCD symptoms. Is OCD something I can expect down the line? Also, I am curious is your kids do better in the summer when school is out. Finally, are there any PANDAS support groups in Manhattan? Thanks!

[Fixit]

Hi everybody. I am happy to report that my ds 10 is doing great. I am watching him carefully and swabbing his throat every couple of weeks to be extra vigilant. He is off antibiotics and used Anatabloc whenever he gets tics. I had 2 questions. First, do any other Pandas kids here display tics but no OCD signs? At the height of his exacerbation my son had very bad motor and oral tics, distress and inattention but no traditional OCD symptoms. Is OCD something I can expect down the line? Also, I am curious is your kids do better in the summer when school is out. Finally, are there any PANDAS support groups in Manhattan? Thanks!

 

Hi there,

Mom of 3 ticcers, 2 in remission, one of those 2 looked like heading to possible autism(cleared gut of yeast and is fine), oldest ds12 still fighting to get to 100%.

Yes, i think ocd could pop up. with this ongoing episode almost 4yrs, we have had, tricatelanmais(sp), complusions, and a recently a desire to leave a room the same way he comes in. I try not to feed it nor ignore it. I brushed it off when he "confessed"it. And a couple of times i noticed he turned around to leave room the same way, i acted as if to do some other thing to redirect him out the other direction with a chore or something. And this is not daily, it's occasionally when he has time to think.

TICS are the main/only problem. AND adrenal fatigue(dialated eyes, like a cartoon character)(could be inflamation as well?)

 

Except last summer..yes for us the summers are better.

 

 

Also re Anatabloc

who prescribed this for you?

was it for pandas, inflamation in general, inflamation in the brain, or for thyroid?

Is this supposed to stop thyroid conditions???????!!!!!!!!

DS12 going on13 has a thydoid condition that i believe ties into his pandas on some level. he is on levoxyl, and we using other supplements.

 

ARe you saying he is tic free once you add antabloc?

how long do you have to use it for?

is it something that you take off and on? or should you maintain a steady dose?

WEre you warned of any known side effects?

Are you in a clinical trial?

 

Thanks for your great update and information!

Edited January 25, 2013 by Fixit

[911RN]

I, too, have an interest in the Anatabloc...wow, I just looked it up. Supplement from GNC- my favorite supplement store-ha!The ingredients are Vit A, Vit D and Anatabine.

 

Anatabine is one of the minor alkaloids found in plants in the Solanaceae family, which includes the tobacco plant and tomato, that has been shown to affect monoamine oxidase (MAO) activity.[1][2] Anatabine is found in cigarette tobacco and smoke, and is absorbed in the human body after tobacco use.[3]

 

This is interesting...my Neuro actually suggested Nicotine patches for my son for tics to see if it would have an impact. I never did...just thought there was something so wrong about pot'l addiction to nicotine and also there as age thing re:patches. He is too young at 12.5.

 

If this stops tics- I'm tempted to try it.So far, the supplement trials have had very little impact for us. But, always willing to trial another one

 

My son's tics are usually better in summer once we get through height of allergy season.

 

My son's tics started first then OCD many years later. His OCD is not bad, rather quirky. It was never really identified as OCD years ago. Perseverating, resistance to change, liking routine, needs for task completion etc. I didn't really start calling it OCD until he was older- about 10. He waxes and wanes with it.

[Broo100]

I noticed that, when he went off antibiotics, whenever he tic-ed Motrin would work really well. Since I am scared of ulcers I started to look at OTC anti inflammatory alternatives and stumbled upon Anatabine. I asked Dr T and he suggested that as a MAO my son should stay off some foods like cheese or wine (not an issue yet!). Otherwise he said that Anatabine may be very interesting for Pandas. My son does amazing on it. He carries a little dispenser with him to school and if the tics bother him he takes one. He can take up to 3 a day (adults 6) but he usually just takes one. My husband is also taking it for an autoimmune condition (doctors don't really know what it is but it comes and goes) and now my dad is taking it for allergies and rosacea. If this ends up having some horrible side effect I will end up with no men in my family!! but so far everyone seems very happy. I could not find anything about side effects online but would love to hear from other people that are taking it. Again, for my son it produces immediate results and he also like to feel in control of his tics by carrying the pills around. THat in itself, I think, reduces his stress and makes him tic less. The pills are EXPENSIVE but would love to hear other people's experiences

[911RN]

I noticed that, when he went off antibiotics, whenever he tic-ed Motrin would work really well. Since I am scared of ulcers I started to look at OTC anti inflammatory alternatives and stumbled upon Anatabine. I asked Dr T and he suggested that as a MAO my son should stay off some foods like cheese or wine (not an issue yet!). Otherwise he said that Anatabine may be very interesting for Pandas. My son does amazing on it. He carries a little dispenser with him to school and if the tics bother him he takes one. He can take up to 3 a day (adults 6) but he usually just takes one. My husband is also taking it for an autoimmune condition (doctors don't really know what it is but it comes and goes) and now my dad is taking it for allergies and rosacea. If this ends up having some horrible side effect I will end up with no men in my family!! but so far everyone seems very happy. I could not find anything about side effects online but would love to hear from other people that are taking it. Again, for my son it produces immediate results and he also like to feel in control of his tics by carrying the pills around. THat in itself, I think, reduces his stress and makes him tic less. The pills are EXPENSIVE but would love to hear other people's experiences

 

Broo100,

Did you see results immediately with tics when your son started taking Anatabloc or did you give it awhile... and then it helped. In other words, do you have to give it routinely for awhile then the results are more immediate? I bought some- only gave my son a 1 tab, then 1 tab then 2 tabs over last weekend. Didn't appreciate much for my son's vocal tics(main tics- he very little motor tics). Just wondering...also son does not like mint. Very sensory to taste so he just swallowed them. He dry swallows pills when needed. Grosses me out but he has never had any issue with it. You may not know... but does it have to be used like lozenges to work? Should sucking on it vs swallowing it have much impact?

 

It recommends 2 tabs 3 times per day...does you son take that much daily or more?

 

Thanks!!

[ThinkGutBacteria]

We haven't seen any OCD yet either, just vocal tics, which Benadryl helps. I recall Dr. Swedo saying something about OCD and/or tics can occur. On her radio interview, maybe? The separation anxiety, oppositional behaviors/tantrums mostly went away with tonsillectomy/adenoidectomy. The insomnia was helped a lot by T&A, but then we had to add melatonin to really fix it.

 

Here's the link to the radio interview

http://www.blogtalkradio.com/thecoffeeklatch/2011/02/10/dr-susan-swedo--nimh

[Broo100]

I started off with 3 a day. My son likes mint but I imagine that it does not matter if one chews it or swallows it. Now his tics are considerably better and he only takes a pill if he has an exam or a viola class or is in a situation where he is scared he might tic. If he has sugar (which I try to limit as much as I can) he tends to tic and and he will take a pill then. In those situations I do see a very quick result. Within 10 minutes it's much better. While I am not really sure I would try it for at least a month 3 pills a day. My ds is only 10 if he was a larger teenager I would up it to maybe 5 or 6. I hope this helps. I love this supplement.