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Are there any PANDAS kids thriving?


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Thank you for all these great responses. The amount of experience and knowledge in this board puts to shame any doctor. I was watching my son play, tic free, this morning and thinking that maybe this was the worst? I don't know and will certainly be vigilant but am feeling positive. I have also noticed that many pandas kids seem very smart. Maybe the parents here are specially involved and that extends to academics. I have 2 daughters who have not exhibited any pandas symptoms but I notice that they tend to affect siblings too so I am watching them carefully too. Do any parents here suspect that they themselves had pandas growing up? I suspect my brother might have. Finally, I have been using Anatabloc for my son which is supposed to be a natural anti inflammatory that does not affect the stomach. It works quickly and perfectly in stopping the tics but I was hoping to hear if anyone here uses it too as I can't find anything anywhere about possible side effects. When something is too good to be true...

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YES -- i consider my ds8 to be thriving. it's been a long, hard road but he is at a good state of health and doing well.

 

he had sudden onset at age 4.5. we discovered pandas relatively quickly -- a few months and he had 100% remission when he got on the right abx. unfortunately, he did not sustain that when he went off abx. we've discovered multiple bacterial and viral issues and have seen good results on treating them. we have also discovered a copper/zinc imbalance and vit D deficiency and are working to correct that. a little while after beginning that treatment, he seemed to have a bit of an exacerbation -- we recently discovered a few viruses back to trouble him. i'm hoping that when we balance those imbalances, he will not be so susceptible to the viruses and thus their effects on him.

 

 

he was hit at a young age, so he is a bit behind in social/emotional aspects and we are in a bit of a muddled situation of what may be effects of being sick during developmental/learning years and what may be simply his personality -- i think it's likely a mixture of both. He's doing very well in learning the skills he now needs, but it is a process in learning - so i don't say he's back to age appropriate as if he was never sick. however, he does reach the bars we set just a step or a few past where he is currently or is comfortable.

 

he's doing great in school -- academically and socially -- and in just getting there -- which all was a very big struggle for a long time. and, he often comes up with some very good solutions to problems he thought were going to stop him.

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broo -- how did you hear of the antabloc? you see an immediate effect from taking it? do you have symptoms other than tics that you see improvement with? i've never heard of it.

 

yes, unfortunately, you are wise to watch your other children. my older ds, 10, does not have an official diagnosis but has exhibited symptoms. his onset included not being able to be on a level of the house without another person present and 'bad thoughts' at night. he had high strep titers and tic borne illnessess.

 

good luck and i hope you have seen the worst!!

Edited by smartyjones
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Hi smartphones,

 

My son had very loud and crazy tics. Jaw pulling, vocal clearing, eye rolling. Non stop. He could not focus at all in schoolwork and was an emotional mess but no OCD symptoms that i noticed. This came overnight and i got a diagnosis very quickly from his regular pediatrician who happens to have a daughter with Tourette's so she is well versed in Pandas. I thank my lucky stars for her. I got eeferrd to Dr T who tested him and he had not only strep but also Mycoplasma. He was put on two antibiotics. I tapered him off and the tics were much better but still going on. I took some advice from this site and added OLE, oregano oil with honey, magnesium/calcium and took sugar and gluten away with great success. Every now and then the tics flare up and I give him this anatabloc which i heard about when searching for natural Antiinflammatories online as I don't want to give him motrin because there is a history of ulcers in our family. He tells me that the "mint pill" works "the best". I actually bought a bit of stock in the company that makes it today (I probably will lose my money but, hey). I try to give as little as possible to him until I hear more about it. It is made of anatabine which grows on tobacco and tomatoes and other vegetables. The tobacco part sounds fishy that's why I was hoping to hear from any other parents that may be using it.

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Thank you for all these great responses. The amount of experience and knowledge in this board puts to shame any doctor. I was watching my son play, tic free, this morning and thinking that maybe this was the worst? I don't know and will certainly be vigilant but am feeling positive. I have also noticed that many pandas kids seem very smart. Maybe the parents here are specially involved and that extends to academics. I have 2 daughters who have not exhibited any pandas symptoms but I notice that they tend to affect siblings too so I am watching them carefully too. Do any parents here suspect that they themselves had pandas growing up? I suspect my brother might have. Finally, I have been using Anatabloc for my son which is supposed to be a natural anti inflammatory that does not affect the stomach. It works quickly and perfectly in stopping the tics but I was hoping to hear if anyone here uses it too as I can't find anything anywhere about possible side effects. When something is too good to be true...

Yes I have heard of anatabloc. It was recommended from a friend of friend who uses it to control an autoimmune disorder (which one I don't know). Said it was unbelievably helpful in controlling her symptoms. Said it was available at pharmacy (not sure If this is accurate as it isn't at our local Cvs). I am going to try it.

Also highly recommended by our endocrinologist & MTHFR doctor who also treats lyme is Reuma-art x-strength by Full life company. All natural herbal blend of horsetail, stinging nettle, garlic & celery. He said its been incredibly helpful to patients with inflammation and rheumatoid arthritis etc. one of his favorite products (among our 40 other supplements :) surprisingly he wasn't familiar with anatabloc

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Broo100 -

 

 

You are so lucky to have caught it early. Are you in NY/Long Island? If so, can you PM me your pediatrician's name? How long did it take for you to see an improvement in your child's tics and what antibiotics were you using? We are seeing Dr. T too. It is just taking a longer time for us to see any pos effects.

 

Thank you!

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Hi Stillhopeful, my pediatrician's name is Dr. Silverblatt in Brooklyn Heights. While she "caught it", dr. T has been running with the treatment. But she has been very open minded about it. The improvement in tics was immediate after antibiotics. However, some still remain but i think it is getting better.

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Yes. Have three. First son-diagnosed in 2009. Very bad case requiring PEX and then IVIG. Now he is in 5th grade and doing great. To hear the story of where we came from you would not believe it was the same child. He is sweet, sleeps like a baby, no tics, no movements, patient, kind, focused. Unbelievable. My second child had responded to antibiotics and IVIG and is now doing well. We have not had any issues this school year. My third child was diagnosed this fall. She has responded to antibiotics alone but I will do IVIG without hesitation if needed. It has brought my other two children back.

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Yes! I went undiagnosed for most of my life--didn't know what wrong until I was 19 and I personally feel I was a pretty bad case. But I just finished my first semester of college with a 3.7, Dean's List. First semester was rough about halfway through when strep went around the college and I had a small exacerbation but Augementin 1000 XR twice daily pulled me out once again. I've also got an entry level job in my intended field and a decent social life. So yes, I feel like I'm thriving, PANDAS or no. Not gunna lie, it's a chronic illness and it is very hard to live with sometimes, but I think it's possible to do well with it.

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My chronic pandas child is doing well....caught early and many, many abx I've the last 4 years. Tics are gone,some residual anxiety, but getting help with this. Mistake I made along the way were trying to take her off abx. She remains well on prophylaxis.

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Yes! I went undiagnosed for most of my life--didn't know what wrong until I was 19 and I personally feel I was a pretty bad case. But I just finished my first semester of college with a 3.7, Dean's List. First semester was rough about halfway through when strep went around the college and I had a small exacerbation but Augementin 1000 XR twice daily pulled me out once again. I've also got an entry level job in my intended field and a decent social life. So yes, I feel like I'm thriving, PANDAS or no. Not gunna lie, it's a chronic illness and it is very hard to live with sometimes, but I think it's possible to do well with it.

Edited by croatian mum
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