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BeeRae22

Tired of playing doctor

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I posted at the beginning if summer about dd10- regressed after removal of Bactrim for the 3rd time. So here we are, mid summer- I had hoped to have her off of abx by now, and now we're back up to 3 abx cocktail again of zith, Bactrim & mino.

 

So, we added the mino back in (had been off for over a year) and I'm not sure if its doing anything, or not? I am going to try removing it, but I don't know if I should-- dd is finally rounding the bend, but PANS is still there, humming under the surface. I think it's the Bactrim that's helping, but can't be sure of that either!

 

Love our doctor, but I often feel as though I am taking the responsibility for the decisions regarding dd's treatment..... We could try this, we could add that, we could change this-- how am I supposed to know what to do? 2 1/2 years of heavy abx treatment now, and no end in sight :( how am I going to live with myself if there are consequences of the treatment when ultimately I am the one that has to make these decisions? Now that she's had such a tough time removing Bactrim again, I am terrified to take her off it again. Backing off of it again during the school year seems like a risky proposition, so am I looking at another whole year before I try again? What do you do when you're "hooked on abx"? Keep going and going? Anyone done any real research on long term abx affects? Something I should look into more, but regrettably I lost my ambition to research much about any of this some time ago... It's exhausting and seems to go in circles.

 

Dd still not back to baseline like she was in May :(

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Hi there, I just joined this forum specifically to respond to you. I'm working on creating a blog about our PANDAS journey and help any moms I can...like us all, I'm sickened by the lack of knowledge, help and empathy on the doctors' end, and your post really affected me because I was also fearful of long term affects of abx. When things got really bad for us, we moved past the other doctors we were dealing with and found ourselves in front of a knowledgeable neurologist who suggested we start IVIG right away. While it did take a good 2 months to see full/optimal results, we are so glad we did! Is this something you have read about and/or discussed with your doctors or a neurologist? I know that insurance doesn't always cover it so that is obviously a huge factor, too...but I just wanted to make sure you'd heard of it and know that I can answer any questions or concerns you may have about it as we are now big fans. And my apologies if you have mentioned IVIG in other posts, I only had the time right now to read your post from today and wanted to reply right away!

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So sorry, Beerae. I can "hear" the frustration and demoralization in your words. This stinks.

 

We were on abx for about two years ourselves, and all I can offer is that having done that, now five years later, doesn't appear to have had any lasting ill effects on DS. He still responds when put on abx for different issues (wisdom teeth removal, ear infection), and his gut seems healthy and normal.

 

I know you've explored other supports and avenues, and I don't know what you're doing with your DD at this point beside abx, but in the end, while abx brought our DS back from the brink and started the turn-around and healing, it required other components to bring him back to his fully functional, happy self. Time was definitely a factor, too. And he was older than your DD when the worst of this hit him (12), so I'm thinking hormones may have played a role, as well, and your DD, unfortunately, may still have that to work through.

 

But don't give up, and even though you may sometimes feel unqualified (you're not the doctor) to make the treatment decisions, try to trust your gut, your experience, and your unique knowledge of your DD. Unfortunately, at this point in time, NOBODY has all the answers (doctors, researchers or parents) for all sufferers or situations, so we have no choice but to engage in some careful but "edgy" responses.

 

Treat yourself a little this evening, recharge, and know that you'll find answers and it'll get better.

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yes, it is so frustrating to have to make the decisions but feel not the best qualified to do it. i feel ya!

 

how are you taking her off the abx when you do? are you weaning or just stopping?

 

for initial exacerbation, my son was on abx that we likely took him off cold turkey. we then used homeopathic options. whenever we tried to stop that one (even wean) he reacted - so we left him on it for a long time (but it was not abx, so i wasn't as worried). when we finally took him off, we did it very slowly and watched carefully.

 

he has not been on abx for a long time and uses them only in acute situations. last year, he had a lyme rash. i forgot b/c he hadn't been on abx for a long time. we just ended the doxy when time was to come off. the next day was a disaster at school - and i mean disaster! a few months later, he had strep. this time - i remembered and weaned him off and he did much better.

 

can you have your docs support in weaning off the abx and adding back if needed or prescribing so you can do the weaning?

Edited by smartyjones

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