Remission, Illness, and Flares

[Dean1065]

For those that have been battling this for a while I was hoping for some insight on what we might expect in the coming months/years. My DD9 is 3 1/2 months post IVIg and is doing quite well. We are new to PANDAS having had her first identifiable episode 5 months ago. We are currently on prophylactic Azithromycin. What I am wondering is whether or not the kids flare with every illness, how severe the flares are, and the normal duration? Obviously we hope that we never see another one, but are trying to be realistic and have an idea of what to expect.

[LNN]

I think this answer is different for everyone. I think in general, flares are rarely as bad once you have a dx and a supporting doctor on board because you have more tools at your disposal to act quickly. But you'll get mixed answers from the forum. I know kids who only see mild issues, parents up the abx dose and do ERP for a time and then they're fine. Others need stronger intervention. The ones who don't need much aren't on the forum anymore. But it really depends on the child.

[dcmom]

Hi Dean,

 

I am so glad your daughter is doing well!

 

I have two daughters with pandas (initially triggered by strep), diagnosed at initial onset a little over three years ago.

 

Both had plasma pheresis within a few months of diagnosis, which brought them to (or close to) 100%. Since then we have had definite flare ups due to losing baby teeth and/or illness. Most of the flare ups have been MUCH milder than the initial onset, but we also have a protocol to address flare ups immediately, which seems to be helping.

 

One daughter seems to flare up immediately, or even slightly before we see signs of physical illness. In the other we usually see pandas symptoms appear after (up to a few weeks) illness. Both have had one flare up with no corresponding trigger that we knew of.

 

Thankfully, both girls are able to live a fully normal and happy life, they have great friends, excel in school, participate in extra curricular activities and are generally happy. They do struggle with some ocd with flareups, that sometimes takes a little while to leave- but, thankfully, it is mild. It has been a rollercoaster three years, for sure, the first year being by FAR the worst, this last year, the best.

 

Our current protocol (which is always open to tweaking) is that the girls are not on any prophylactic antibiotics. They both get daily probiotics, and one gets vit D plus calcium (for a deficiency). If I see ANY signs of pandas, I usually wait 24 hours to be sure, and then start them on a z pack along with 5 days of 3x/day advil. MANY times this takes care of the flare up immediately. If this does not work, or they do not maintain improvement, we consider a burst of oral steroids. I have been using the dosage of 40 mg/day for 3 days, then 20 mg/day for 2 days. This seems to take care of things. Both have done steroids 3x (in that dosage) this school year. Usually, the summer is good for us.

 

I hope this helps! I have found, for us, the KEY is an immediate and aggressive response to any pandas flare up. Once "the train has left the station" I think it is a little harder......

 

I hope for the best for your daughter!

[dfw]

We are in a similar situation, about four months ago the initial episode. No IVIG, but our daughter is doing pretty well (though not 100%) after trying several different antibiotics. I feel like we just kept spinning the wheel of antibiotics and finally landed on the right one for whatever triggered it this time. I was wondering how you developed your response to flares plan. Do you see a PANDAS specialist, or was it trial and error? We have seen several different types of doctors in our area, but if it happens again, I don't think we would be much better off in getting the right treatment than the first time it happened. We are debating if it would be useful to see a PANDAS specialist now that she is better, or whether all the testing they do needs to be done during the flare. Just wondering how people know how to respond and are able to get the drugs they need quickly after the first episode.

[nicklemama]

Our DS has been sick w/ PANDAS for over 3 yrs now. He went more than a yr w/out a diagnosis. He had IVIG one yr ago. He's doing really well, for the most part. We do see flares. Not as bad as the original episode but they can be disconcerting. He has flares w/ getting new teeth. He has flares when he gets sick w/ a cold. He has not had any kind of bacterial infection since diagnosis and starting abx. He is flaring currently due to a cold he caught about a week ago. Its not an everyday thing but last night he had a meltdown when it was time to take a bath and go to bed. It was not nearly as bad as he was before dx but it also was not pleasant to experience. This occurred after he had a really good day and then played his best game of baseball ever. Its quite a letdown when you think things are going so very well.

 

He is currently on prophylactic abx (augmentin) and he is receiving some biomedical treatment to improve his methylation/sulfation cycles. We started this about 6wks ago.

[NancyD]

I agree with LLM. It is different for every child. And I think it is different for a child who is treated properly immediately after initial onset of symptoms vs. a child who has gone for years without the proper diagnosis and treatment, as many of our kids have.

 

As a parent who has been dealing with PANDAS for 14+ years, my only advice would be to rule out Lyme and other tick-borne infections (through IgeneX), as well as Mycoplasma and viral infections, to ensure that there are no other underlying infections that could keep you from staying in remission. And also to test (and treat, if positive) for KPU and MTHFR mutation, which might explain why your child is sick in the first place.

 

Best of luck to you for a long-lasting remission!!

[JuliaFaith]

When we first got ds14 dx he had to take abx if he had a cough appear at all. Otherwise, it would get worse and worse. Now after 18 months of lyme/coinfections etc. treatment, he seems to be healing like everyone else when he gets a cold, stomache flu etc. Have not used abx for colds for 18 months now but he is home-schooled so not around very many people. But every time he gets sick, he is back to baseline in the same amount of time as others in our family (non-PANDAS).

[EmilyK]

So it is possible to have a flare up while on penicillin? It's not as severe as pre-penicillin, but difficult nonetheless. My son has been diagnosed just this spring. He responded very favorably to his first three weeks of antibiotic. Flared up immediately when off and was then given another 30 days. He's doing much better but we are have some meltdowns and compulsive behavior again. I'm not looking forward to the end of the 30 day dose. It's great to find this forum