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so mad at how much information is out there and its all contradicting


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I understand that this is a new disease and that they are still learning about it, its just frustrating to me that they arent doing more...how about stop spending money testing if eggs are good to eat in the morning and test on this stuff, our kids are suffering and the family is as well!!! My son is 7 years old, before christmas he got sick (puking, fever, squirts and everything) two days later he started a confession of sins and then the thoughts came on board, he told me all about how he likes girls (pretty much everyone he could think of and didnt want to leave the house due to seeing girls and thinking they were "sexy" (His word, which we told him to have proper thoughts about girls, they are Gods creation and we are to respect them) after two weeks things started getting better but I just knew something was wrong...got an appointment with who i hope i a pandas specialist (he has been great so far dr k in beechwood ohio) anyways he took blood and said to continue with ibprofuen (we had done it for two to three days and it seemed to help...about 7 days later he called and said ds had elevated lyme wanted us to see him in 4 days...he then said ds was pans/pandas probable and that lyme and pans treatment is the same...so we are about day 24 into the treatment of augmentin...so far so great (except with me i feel like i am waiting for the other shoe to drop and reading a ton)....anyways people that went through this with us i have shared ds diagnosses and they have said the same thing, "i have tried to read on it but there is so much info that contradicts out there"...and i agree. As a parent i am so confused and even the dr does not give straight answers. Again i know this is new... I just feel helpless and want my son to have a good life. dr said augmentin for three months and we will talk about lower dose.

 

Questions

 

should i push for ivig? I have read that kids who get this caught early and get IVIG have been healed majority of the time/then i read that both abx and ivig are whats needed when caught early.

Do kids need Abx till they are like 21 or can a year or two put a kid who is back to baseline where he needs to be and he would have no flares again...or will heneed ABX for his life? I thought sammy from saving sammy was off all medication but then i heard him say he gets ABX when he feels symptoms return.

 

with elevated lyme if we get rid of it (he had 5 of 6 lines neccesary for lyme) do we get rid of pandas (no bed wetting, no dialated eyes, no real big detoration in handwriting but he is in first grade whos to say for sure)just anxiety and crazy thoughts for two weeks.

 

why are people not looking into this, why do Kids have to suffer?! I will say I did talk to our regular ped as another kid has the stomach flu and we had a newborn (oh boy first dealings with pandas and a newborn) and she said that she was taught about Pans/Pandas in Med School and knows about it, so thats a good sign. Anyways, SO FRUSTRATING...heck the page they tell you to go to says to treat a pandas kid as with any other OCD child with PYSCH drugs and that is all....I read about kids they have gone into remission for good and then I read on here that that does not happen....But then other places say it does and one website said 63-68% of kids that took ABX went into remission for good....so confusing!!!!

Edited by madisonjar
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You can be mad, but it won't help. You will not change the current state of affairs in mainstream medicine with your anger; what is, is. You need to save your energy and focus it towards healing your son. Perhaps what you learn and share with others will be important.

 

If your son has positive or IND lyme-specific bands, he has been exposed to the infection. Lyme doesn't travel on it's own, coinfections are frequently involved. I am glad you have a doctor who is open to the possibility of tick borne infections causing PANS reactions. These infections are very immune suppressive and need to be addressed. Our daughter's PANS was caused by bartonella. Treatment, first with abx, and now with antimicrobial herbs, has brought her to remission.

Edited by rowingmom
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I am spreading the word as much as I can right now and trying to do it smartly. We dont know where we are at on this path, its just frustrating that doctors will fight over this all because their textbook in 1959 didnt say anything about pans/pandas and so it couldnt possibly be true. Well Guess what Autism was controversial too, open your eyes people and lets help out the sick, you know the job you signed on to do :).

 

also the bands he tested positive for is IGG 23,41,58,66 and IGM 41. I asked the doctor about co infections and he said not to worry if augmentin helps brayden get better he is not worried about co infections. In the mean time We have decided to go the essential oils route we are currently using thieves and frankincese and rolling it on him 3-4 times a day, weird part is the first night we rolled it on him (we did it right before bed) he threw up that night for no reason.....could that be a herx? He had been on antibiotics for two and half to three weeks before that....this week I am going to add a little oregano oil to the mix as well and put it on him everyday, I hear that is great to cure co infections of lyme. I have also added a Omega 3 and DHA gummy for him, but I am looking into getting stronger stuff.....We will also continue with his probiotic as well.

 

The whole point of this thread was to say how crazy it is that this disease has been around and getting noticed yet it seems like its still stuck in first gear as far as testing and studies on it...and very little information, and the stuff that is out there is contradicting itself....if it wasnt for this forum, I would be really stuck lol.

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There is no point in doing IVIG until all infections are cleared. We've done IVIG twice. It's not a cure. My son had lyme and wasn't tested. After all that money and time, two years, we finally got some healing by treating lyme.

 

Augmentin will not get rid of lyme on its own. My son was on it for the first two years.

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"The whole point of this thread was to say how crazy it is that this disease has been around and getting noticed yet it seems like its still stuck in first gear as far as testing and studies on it...and very little information, and the stuff that is out there is contradicting itself....if it wasnt for this forum, I would be really stuck lol."

I don't think you are correct about this. P/p is still "controversial" for those who are not well informed. NIH is in our corner and has been for a while. There are many PANDAS clinics out there. THere is no test yet because there cann't be a test for this condition given how it is conceptualize at this point -- there is, however, a good proxy, Cunningham's. science does not understand the way immune system works or the way genes work or the way methylation works well enough for a better definition of this condition. When that underlying knowledge is available, we will have a better understanding of this pediatric condition. it, probably, will no longer be just two conditions Pandas and Pans but several.

there are tests for various infections that might cause P/p. The principle of healing is also very clear: lower inflammation, clear infection.

For some infections like strep can be cleared more easily, though not easly by any means. Lyme is more difficult although there seems to have been a recent breakthrough with allergy medicine -- if I understand that one correctly.

Many kids are getting better.

Edited by pr40
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