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21 days on ABX and waxing


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After 21 days on ABX and still going my DS is starting to wax again both behaviorally and tics. I was so hopeful things where stabilizing from ABX. Still have a few days left. I'm so upset. He's had some sugary food over past few days and also had a slight collision at basketball game so perhaps it could be from that. No sure what trigger was. However I'm confused. If its PANDAS than could sugar or a collision actually trigger a waxing phase? At my wits end.

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It might not be the sugar or collision but perhaps the stress/excitement of the game situation. I have noticed my son go from no ticcing at all to constant ticcing starting an hour before game time. I have also noticed ticcing when he has a speech or presentation at school. I don't say anything about it and it will usually pass.

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Stress could open up the blood brain barrier and cause increased PANDAS symptoms. Also, it's possible that your child was exposed to something (virus or bacteria) at the game which is causing the flare.

 

Have you given Ibuprofen?

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If his symptoms are caused by infections other than strep - our daughter's was caused by bartonella - then 1 antibiotic is not going to be effective. We saw the same initial waning, but then waxing with 2 initial rounds of PenVK for strep. The first 10 day course made a huge difference in ticcing and behaviour symptoms, but during the second course it all came back.

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Oh this strange strange disorder! For the last 2 years, I have gone from being completely stymied as to why my son would wax/wane his way through life since this all started. 2 years later, time and education has lended itself to understanding all of this. My son has exhibited full blown flares that lasted weeks, popcorn flares that vanished in a couple of days, to intermittent flares that lasted only a couple of hours...For my son, it seems to be indeed true that a scrape on the elbow can express itself with Pandas symptoms for a day or 2. I have seen him react to stress and become symptomatic. By that I include even good stress....excitement over his birthday party, the idea of Christmas. I have seen him react and recover over and over again to cuts, emotional stress, colds, even allergies. What is very apparent to me is that once this disorder is tripped off, it has a life of its own. It just takes something to trigger the immune response. It seems that until complete recovery, when the BBB has healed, the T cells are no longer misguided, the T cells leave the brain, the brain and autoimmune system has matured, we can expect the wax/waning to be apart of his life. What I am grateful for is that we are not completely helpless. Things like motrin, abx, ivig, steroid, supplement therapy, proper diets, methylation, have allowed all of us to take some control over the situation. Thank God.

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Thank you everyone for the quick responses. He's been on Biaxin and Augmentin for past 23 days. Still have a few days left. Also giving a probiotic. His behavior issues and tics seemed to wane after a week into ABX which had me very hopeful but he's waxed over past few days. Played in a basketball game on Saturday and had a birthday party on Sunday. Lots of sugary, cakes, cookies and also lots of excitement. Today is Monday and he's still having problems. Is there usually a lag time in the flare up? Does it usually last a few days even after sugars and excitement have subsided. How long should ABX be given for? I'm wondering if Doctor will suggest another course? Can you give Motrin while on ABX? Good grief this is all so stressful.

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My guy often has a meltdown just as something really, really fun is ending. Leaving a friends' house? Gonna have a total breakdown in the car. It's not about the sugar, it's about the sadness and disappointment that the fun thing is over. In our case this doesn't usually signal a new flare, it's just an ongoing symptom he continues to have. We have to set his expectations and impose consequences for wildly inappropriate reactions. We didn't have to do any of this pre-PANDAS, but currently I would say that his extreme reactions to this kind of everyday disappointment is our biggest ongoing symptom.

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A lot here report reactions to sugar and Pandas with their children. Mine does not. I read recently somewhere about how sugar and Pandas are not friends, something about it's effect on T cells...I read too much to remember where and when right now and exactly what it said...sorry. But for your child, it will have to be a parental clinical decision. Yes, their is definitely Lag time with flares. I have never read an explanation that fully explains wax/waning. I think there is a lot of good theories at best. My own experience and what I have learned is this: Sometimes the wax/wane is a part of recent flare. Sometimes is a whole new episode because your child barely recovered and was hit with new Illness or just exposure. Sometimes it is just stress because stress can turn on the immune system. When it comes to these wax/wane issues, what has helped me from going crazy is the understanding that anything that can cause an auto-immune response can cause little wax/waning or even a full blown flare.

 

ABX: I would wait until he is non symptomatic and returned to his/her own baseline of normal for a couple of days. Is he/she on prophylactic dose?

 

Yes, you can give Motrin with abx.

 

As far as your own stress: Have a glass of wine...that is what I do...

 

Best Regards....hang in there...

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