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Prophylaxis.... to continue, or not?...


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Hi all,

 

DD7 is good... I mean v. good!! :D It's been happy for over 12 months here.

 

Quick background - overnight severe TS/tics end of 2012 with all classic PANDAS symptoms following slapped cheek and a year of on/off strep throat, gradually resolved 3/4 months later. Prophylaxis erythromycin for 2 years now and just get mild OCD with very minor flares. Not seen tics in 12 months, just some on/off stuttering and repetitive questioning/heightened emotions with minor illness. Very manageable and DD is generally happy, sociable and settled at school.

 

Pediatrician is prescribing abx via local hospital as GP just refuses. Ped. is supportive but limited knowledge and wants to withdraw abx this summer (just as DD is going to change schools!! :wacko: ) - he says this will 'prove' if they are actually doing anything or not. I am scared that she will backslide and we may never get this 95% back again. I imagined treating her as if RF/Sydenham's and keep abx up until 18 years old +.

It was a horrific onset that rendered her dysfunctional as she could not control her body and had to limit school time. She was 4 years old and to see her then was truly heart-breaking. I know all the risks with abx but I would guess this is the best of 2 evils. She tolerates them well and has no obvious GI issues.

 

What to do?? Bear in mind we are UK and there are no true 'specialists' here.

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I vote no. My son flared after free for 18months. He was on abx. My point why chance it? And why does your child have to flare in order to prove something to doc!!!

That being said, summer months are probably best time for a break. Maybe supplement with turmeric for antiinflammatory. Fall time I would go back to abx though. My son has been in a flare since dec..ugh.So I have a strong reaction to compromising a good run. Good news he had second ivig six weeks ago and am seeing improvement. Dr k says his exp shows he has rarely had to do a third.

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I would say if you have no choice in the matter (ie doc stops prescribing no matter what you want), then I would start now and have herbal abx on board, at full doses if possible, and only then begin to wean off abx. You do not just stop abx, you must wean off very slowly IMO. I put kiddo on herbal abx (cyrptolepsis, sida acuta and alchornea) all at full doses before I began weaning abx off at 1/4 tablet per 3 weeks until she was completely off traditional abx. She eventually did flare again, and we are back on traditional abx for now. I would also suggest you make sure you have some traditional abx on hand so you restart them ASAP should a flare begin rather than having to wait to convince a doctor she really really needs them. That could take weeks and flares spiral quickly.

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