Re: Prophylaxis - what would you do?

[Lydiasmum]

​Dear Everyone,

 

​I had waited all day for a phone call from the paediatrician to get advice. The call never came. I am pondering and worrying and thought I would turn to this wonderful forum for advice.

 

​My DD is 81/2 and she has been taking prophylaxis erythromycin for just over 3 years now. She has remained at 90-95% good, with very minor and manageable anxiety and mild tics following viruses. She has achieved 100% attendance at school since taking the abx and has tolerated them well - no stomach issues and no major behavioural issues and explosive movement disorder since PANDAS entered our lives.

 

​However, in the past few weeks she has mentioned an 'odd feeling' in her chest and stomach area a couple of times. On these occasions, I put it down to a bit of worry or stress relating to what was going on at the time. However, last evening at tea time she was holding her chest and looking uncomfortable. I saw she had cleared her plate and asked her if she might have eaten too much/too fast. She said 'no mum, it's that funny feeling I told you about before, happening again'. When I asked her to describe the feeling, it sounded very much like irregular heartbeat. Me being me, I googled her abx in relation to this occurrence as a side effect, and - yes - there have been reports of prolonged use causing arrhythmias.

 

​Now I have a dilemma because, obviously, this isn't good but I am assuming its the abx, not knowing for sure (just like everything else it seems!). Being scared about the fact her heart could now be suffering from such an extended use of abx, I stopped them last night. Gave her none today either. I am left wondering - what could be the effect of stopping prophylaxis suddenly after so long? I can't find any useful information on withdrawl symptoms of continued abx. And of course the awful fear she is now a sitting duck for strep and other bacterial infections.

 

​I never imagined keeping her on them indefinitely, but then again I haven't wanted to think that far ahead. We have just been happy living with the worst behind us. It has taken me over 2 years after the initial 'event' to actually file the thought of PANDAS somewhere away from the front of my mind. What would you do? Does anyone have any similar experience? Could her immune system now be stronger with age, despite being protected from the abx? I feel sick to think this may invite another major flare and then we can't get her back to this good, but on the other hand - why is she feeling heart flutters?

 

​Thanks for reading - and Merry Christmas by the way! x

[LNN]

I'm so glad your DD has enjoyed such a long remission! I don't know of any warnings about suddenly stopping antibiotics. We did wean my son, but I think it was an abundance of caution because he had Lyme and had been on several abx at the same time and had regressed a few times when we first tried to stop them. In hindsight, the problems were due to mold in his school building, which went away when he matriculated up into a higher grade in a different building. Once he was in a new building, he was able to stop abx entirely.

 

For what it's worth, I used to suffer from periodic chest pains as well - from the time I was in my teens until my 40s. I described it to my doctor as a vague pain around the area of my heart. Not a pinpoint pain - more of a general area pain, a tightening, like a headache, except in my heart. It would come in bursts - the feeling would come on a few times in a week, or a few times in a month, and then I'd go 6 months with no issues. Turns out it was a magnesium deficiency. When my kids became ill with Pans, I started them on several supplements, including magnesium. I also started taking it and then realized that the pesky chest pains had stopped and never come back. Last year, I ran out of magnesium and went a month or so without it and the pains returned.

 

So I think it's wise to have a medical evaluation to rule out anything serious, but you might also look into something more benign and less likely to be tested - a mineral or vitamin deficiency.