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Getting to baseline after a flare up


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DD5 has been doing really well lately. I'd say just about 95%.

We saw our LLMD on Wednesday, and she even told him that all her bad thoughts and bad words were gone.

Then Thursday night, she said it felt like she had to vomit. She never did. Friday morning, she was a bit moody. She said she didn't feel well and had a temp of 101.5. It went up as high as 104.2 late Friday night, along with nausea and vomit one occasion. Saturday day, she had a low temp, but felt well after a nap. Then her brother vomited on Saturday night. Then felt OK.

 

DD5 PANDAS, played soccer on Sunday because she was feeling better. My almost 1 year old was having those weird seizure like episodes on Sunday. And she woke up with a fever and ear tugging on Monday. Brought her to the pedi and she has an ear infection.Then my son threw up on the ride home.

 

So, Monday and today, DD5 has just been moody, irritable, emotional and defiant. Then tonight at dinner she was crying and told me her bad thoughts and words have come back. Also, another form of OCD has come back, which I haven't seen in quite a while.

 

She is currently on Augmentin 600mg 2X per day, and 1 drop A-bart 1X per day.

 

I'm wondering if I should reintroduce Azithromycin too see if it helps? Try to ride it out?

 

I was hoping to try and wean her off abx soon... I notice her teeth are looking a little yellowish, and I think it's from the Augmentin.

 

So, what do you all do on your path to baseline from an exacerbation?

 

Thank :)

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I am so sorry you are going through this. Are you thinking that the stomach flu is going around your house (in addition to the ear infection issue)?

 

My son has "small" flares - with small illnesses or exposure to other's illnesses. We can usually ride it out with a couple of days of ibuprofen to reduce inflammation until it passes.

 

Regarding the yellow teeth with augmentin - my son had that when he "lived" on augmentin as a child, but it was really just a surface discoloration. It cleaned up when he went to the dentist and he did not have any long-term staining. I know tetracycline can cause long-term staining in developing teeth, that is why they usually avoid that in little kids.

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Ditto the good advice you've gotten. If she isn't showing symptoms of the illness anymore (so you don't see reason to pursue further assessment/treatment for the acute illness right now), then I would really work on the anti-inflammatory front as suggested. I also recommend doing anything else you can to help her system rebound from the illness, which can really deplete a little person. Being physically wiped out makes it that much harder on her-- and much easier to succumb to the OCD wave that she's experiencing right now. Our PANDAS doc has mentioned that fatigue/being tired and worn down could be enough to trigger some mild symptoms (but this was said about a particular instance with our dd, who was not back to baseline at the time, so please don't take or apply this too generally without further clarification from a more knowledgeable source). Anecdotally, when they're not at baseline my kids' PANDAS symptoms are definitely worse when they're tired or run down. So I also try to replenish them as much as I can in the post-illness period. Extra downtime/rest/sleep (if I can get them to sleep extra), and make sure they're getting plenty of the good stuff to help their bodies recover: nutrition, vitamins, whatever supplements are appropriate for the child/situational needs. Just really pushing the health-boosting measures while going at the PANDAS symptoms, too.

 

Some people have success using steroids for the inflammation in these situations (seems like a mixed bag). This has helped both of mine considerably in post-illness phases. My ds, though, tends to have more mixed results than dd while he's actually taking the steroid (it calms some symptoms a lot but seems to aggravate others a bit and it has more noticeable effects of its own on him, too) so for him it's post-illness, post-steroid that we see the biggest improvement.

 

My kids get the yellow teeth buildup, too-- and it does always come off at dentist. We also use an occasional baking soda brushing to clean it up. Also, sometimes a gauze pad is enough to remove it (especially if you catch it quickly). You can also get the little dental tool kits at the drug store to clean it off if the buildup is getting bad. The Sonicare toothbrushes do a decent job at it-- better than the manual brush did, I think. BUT what I hate about those is the cost of replacing the heads-- since my PANDAS kids and their recurrent illnesses/strep require more frequent replacement than is typical. We also have one brush per kid, which is more expensive than having one handle with a separate head for each user, but no way my kids are sharing anything that comes in contact with their mouths. I'd give them each their own bathroom if I could!

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I was wondering how things were going. Sorry to hear not too great. You might want to get her swabbed and I would think about zith. Thats what we did when my son had a flare up and this corrected it and he is great now. If she has TBI I would avoid steroids if you can

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