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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Is remission possible?

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I was diagnosed with PANDAS in October and have made a lot of progress on my anxiety. I now only have 2 intrusive worries left out of about 20. In fact today was the first day I think I had multiple hours worth of not obsessing. (Even though the time was sporadic and not all at once) Anyways, one of these is the fear that no matter what I do it won't completely fix the problem. I know that this disorder is chronic and is not considered curable, but I have also found that remission rates are low. I feel like this fear is holding me back, so I feel the need to write this. By the way I must say college is getting easier to attend as well as driving, it is just the ruminating. One final note, I decided to ask this here instead of a more traditional place for questions like this because of the amount of respect I have for you all. This site has truly helped me more that any other ten fold. Thank you for any replies. Happy Holidays!

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Yes, remission is possible and is often achieved. You won't hear about it on forums because once people are healed, they move on and no longer live on forums. My son was stricken with Pandas and Lyme at the age of 6. He underwent many, many treatments and finally came out on the other side. He's 14 now and Pandas hasn't significantly impacted his life in about 3 years. About once a year, some nasty bacterial bug will pass thru school and he'll come home not feeling "right". He'll take an herbal antibiotic for several days and the Pandas stuff never has a chance to mushroom into something. Other than these times, he's 100%.

 

I think the key is find/treat your trigger, realizing it may not always be strep and it may not always be just one thing. Along the way, my son had to battle strep, Lyme and mold, plus some nutritional deficiencies. Now that these are addressed, he's able to enjoy physical and mental health.

 

Remission doesn't just "happen" - just like anyone who achieves great things, like an athlete or entrepreneur, reaching a goal takes a lot of hard work and perseverance. But it is absolutely attainable.

 

Best of luck!

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Yes, remission is possible and is often achieved. You won't hear about it on forums because once people are healed, they move on and no longer live on forums. My son was stricken with Pandas and Lyme at the age of 6. He underwent many, many treatments and finally came out on the other side. He's 14 now and Pandas hasn't significantly impacted his life in about 3 years. About once a year, some nasty bacterial bug will pass thru school and he'll come home not feeling "right". He'll take an herbal antibiotic for several days and the Pandas stuff never has a chance to mushroom into something. Other than these times, he's 100%.

Hi!!

 

You mentioned an herbal antibiotic...what is that? Just wanted to keep it noted in my files for 'some day' when we are out of the woods. :-)

 

Thanks!

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We use a blend of 3 herbals - cryptolepis, sida acuta and alchornea - all recommended by Stephen Buhner in his Lyme and co-infections books. We get the blend from Woodland Essence http://www.woodlandessence.com -

listed as C.S.A. on their site. But you can also buy any one of them separately if you prefer.

 

Here's some research on alchornea

http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/

http://www.prota4u.org/protav8.asp?h=M12,M14,M15,M16,M18,M19,M20,M21,M23,M25,M26,M27,M34,M36,M4,M5,M6,M7,M8&t=Alchornea,ALCHORNEA&p=Alchornea+cordifolia#OtherBotanicalInformation

 

Lots of good info on all three herbs in Buhner's books. Herbs tend to be "earthy" and bitter. So to get my kids to ingest them, I put a dropperful into an empty gel capsule (from amazon). I give 1-2 capsules 3x/day for 5-7 days or a few days past the time they feel better - whichever is longer.

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Like LLM, I too, will say the remission is possible. I also think, however, that it looks different in most cases, too, and is very individual.

 

In our case, my DS had been diagnosed with OCD and had suffered from various anxiety issues for nearly six years before we found PANDAs and were successful in getting medical intervention (abx) for it. So, his brain, during some key developmental stages, had been wiring itself to cope with all that anxiety, compulsions and obsessions for a long time before we started really beating back at the strep and inflammation that had thrown things askew to begin with.

 

So, maybe because of that protracted period before intervention or because of his age at diagnosis (12), he's recovered, but still somewhat anxiety prone. He no longer has violent behavioral responses to strep exposure or allergens, he no longer "flips out" and finds things unmanageable. He's happy and physically and mentally healthy, doing well in college and loving the social side of it all like he never really could in junior high and even the early years of high school, but he's not 100% anxiety-free, nor am I sure he ever will be.

 

Folks talk about getting back to "100%," and I'm sure that's achievable in many cases. It may still yet be achievable for my DS, but maybe it's just going to take a while longer for him to completely rewire all those coping mechanisms; he's certainly gained leaps and bounds in the last couple of years, that's for sure!

 

So, all that's to say, I hope you can celebrate your recovery, your good times, your returning happiness and functionality, even if sustaining it just yet seems like something of a delicate balance. Enjoy every minute you can, and congratulate yourself on every gain. If my DS is any measure, things just continue to get better and better as the body heals, the brain heals, and the psyche finds other focal points (school, social life, etc.) for all that mental energy that PANDAs and its behavior set used to consume.

 

All the best to you.

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I thank you all so very much. This group has really helped me more than anything really. I am getting a bit worried however, as my augmentin is running out, and although I'm not 100% back, (more like 80) I can coast and seem 100% and I am afraid my doctor will take it away. Good luck and may everyone affected by Pandas or OCD find remission!

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