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What do you when you sense a flare coming on?


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DS10 has now been officially diagnosed with PANDAS/PANS. I posted a bit of his backstory here. He is generally doing well and recovering, but I sense that he is about to have a flare. (I hope I'm wrong, of course.)

 

What do you do beyond ABX when you sense a flare coming on? I just gave him some ibuprofen, and I give him Omega-3s and Vitamin C daily....but is there anything else I can do?

 

Already planning on loving on him as much as possible and hoping it passes quickly.

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Every child is unique somewhat, but here is what I do. When I see Pandas symptoms, I usually give him 2-3 days to see if it is just a popcorn flare. If he is symptomatic on day 3 I go to the abx. If he is out of the box crazy on day 1 or 2 I go right to abx (that only happened once and you know your own childs level of crazy). Dr K does not recommend motrin because it can hid symptoms and fuzz up the read on where a child is at during a flare. For example, one time I decided to use motrin. Sure enough, he was great on it. Kept it on it for 5 days. Then Dr. K shared his opinion on motrin and when I took him off of it, he went to over the top crazy as soon as the last dose completely wore off ten hours later. It was then that I realized that I should have put him on abx days earlier and we could have maybe shortened his flare and not hide it with motrin.

 

That being said, I do think motrin has its value. If your son is on abx, and you feel he really needs some extra help for a day or so until his flare gets under control, I think that makes good sense. Otherwise, I know longer use motrin in place of abx.

 

I have found increasing tryptophan in the diet helps...milk, eggs, turkey

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I would talk to your Doctor too... We are in the midst of a flare, which I believe could be caused by a front tooth finally cutting through. 5 days in I called and they wanted to change her antibiotic... This is our 1st flare since starting antibiotics so it truly hit me like a train. Looking back I now see her increased anxiety before we fell off the cliff... I will know better next time...

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None of the doctors even know what to diagnose DD other than somekind of autoimmune illness, by accident we discovered that ibprophen with a stimulant works to keep the flares to minimum intensity. DD has toouch anxieties to hold still for a clear mri but on the ones she did hold still .nothing can be seen

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I will start giving ibuprofen. If that doesn't do it after a few days, I'll call his doc. For things like an exposure where he isn't getting sick, ibuprofen does it. If he loses a tooth or gets sick, clindamycin for 10 days is called in to be added to current abx. That works. He's already on treatment dose abx.

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We kept an extensive log of symptoms/behaviors/triggers when my son was first diagnosed, and it helped us create a very specific plan tailored to him when he starts to flare. If you're new to the diagnosis, and haven't considered keeping a daily log - I highly suggest it. We were able to see distinct patterns and differences in how flares begin for a new infection vs. exposure For example, wetting the bed = positive strep culture and full flare EVERY TIME. We no longer even wait for other symptoms to develop. Wetting the bed is the first thing we see with a new infection. Our logs were so detailed and the pattern has been so clear even our ped doesn't question when I call and say "he wet the bed, we need to be seen ASAP".

 

Using our logs, we have been able to tell that flares from exposures usually start to subside on their own about 5 days post exposure (typically find out about exposure on day 3 or so, but if there's no wetting the bed, we wait and see). Flares from loose teeth/new teeth are a little less predictable - all depends on how long the tooth has been loose and it takes for the new ones to cut. (These are the hardest for us.)

 

Our approach is this: start immediately with the CBT techniques he's learned for all of his compulsions - even if they don't seem to be resurfacing, it gets him in the frame of mind that we will be enforcing the "no Harvey" rules (his name for his OCD). We modify dinner time rituals/rules - not eating is his most worrisome symptom, and one that we don't like to mess with. We know even at his worst, eating at the counter vs. the kitchen table is easier, so we automatically just start doing that (which we typically only do when one of us works late) as well as modifying the menu to include all of the things we know he won't fight. Makes for a week of crappy eating for mom and dad (mac and cheese again! yippee!!!) but it keeps him eating as long as possible. We also switch our daily ibuprofen doseage from one every morning to one in the AM and one in the afternoon. If the flare continues to deepen, we go to every 6-8 hours.

 

If symptoms don't seem to start to improve after 5 days (and there was no bed wetting prior to that), and we hadn't been notified of a recent infection at school or elsewhere, the whole family is trucked to the Dr. to get checked/swabbed for strep. We normally wait until day 5 because we know that's when his exposure flares start to subside. If it's a loose tooth, we still get checked around day 5 or so just to be safe. If there is no sign of strep (my kids don't have any other triggers luckily), we consider changing up abx temporarily, or continuing to wait (our ped is very PANDAS friendly) - it's usually our decision and we make it based on how functional he is. If he is still able to stay in school all day and continue to function outside of the home, even if it's difficult at home, we may stay the course (especially if it's a tooth related flare) and continue the regular ibuprofen dosing. If he's not able to attend school, it's an automatic that we change up abx.

 

Again, our plan is very specific to our son - and it's based entirely on what we were able to learn about his patterns/flares from keeping detailed logs. My daughter's logs were never so clear cut, but until last year every flare resolved within 30 days of starting abx, so it was a non issue. We are back to logging her patterns now that she's taken a turn last spring. We found some tell tale signs of a flare (hiding/sleeping in corners), but still are looking for other patterns too.

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I try ibuprofen for about the first 2 days of a flare. If I see that the flare is going to last longer than that then I go for the steriods. My daughter has Lyme and I know that many Lyme patients don't do well with steriods but my daughter responds beautifully to a steriod burst. Turns her right around.

 

Dedee

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here is a different reaction: I cannot believe you can sense a flare in advance. in our experience, flares are sudden. are you sure you are interpreting sings you see well?

i did not read the whole story you posted -- in response to your question of what else can you do, dietary restrictions and methylation are the other two usual areas to check.

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pr40 - for us, we see a rise in rigidity when a flare is starting, refusal to eat foods, get dressed, brush teeth, difficulty switching from task to task. In isolation, a lot of this can be written off to a typical 5 year old having a bad day - but they are very early signs for us that he may have been exposed to something or coming down with something.

 

That's not to say that we have not been hit with the total blindside exorcist tantrum rage straight out of the box with absolutely no warning from time to time too...

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Well, I'm totally new to PANDAS so I don't really know if I sensed a flare coming on or not.

 

Here's what I can say: His behavior was goofy at the beginning of the week. I wish I'd kept a log because I've already forgotten what exactly I was seeing--basically increased emotionality/lack of focus. (My son's PANDAS is milder than some.)

 

Turns out his (non-PANDAS) brother was coming down with something awful--at first the doctor thought it was a virus but when symptoms didn't clear the doctor now thinks walking pneumonia -- Mycoplasma.

 

We gave our PANDAS son ibuprofen for a few days and now he's doing better. The one with walking pneumonia is on antibiotics now.

 

I know you folks on the boards talk about mycoplasma from time to time. I need to look into that, but so far it seems that my son with PANDAS is doing better. Cross fingers.

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