Pixie update (post IVIG bout with strep)

[pixiesmommy]

So to recap- Pixie started complaining of leg pain and was lethargic the last week of Feb, two weeks after having spent an afternoon with a friend who had "just recovered completely from stomach flu" according to the mom. I think the friend had strep. I actually was paranoid at the time, but it's a very good friend that Pixie only gets to see twice a year or so, and well, you know.... you can't keep them in a bubble, right?? Erg.

 

So Pixie was the canary. Once I heard leg pain, we took her in to get swabbed. She was faintly positive on the rapid, and I and her lil sis went the next day. We were both positive, so the dr prescribed us all abx. Pixie got 10 days of Cefdinir with no supplemental prophylactic Augmentin, and DH and lil sis also got Cefdinir. I am allergic, so I got z-pack. The dr (and dr K) want us all to be re-cultured a month from onset, so we'll go in at the end of next week probably and get that taken care of.

 

Symptoms as we were still on the treatment abx:

-leg pain

-muscle and joint pain all over

-lethargy

-dark circles under eyes

-quicker to "melt down" and lose interest/patience or just not respond (emotional lability)

-a little more resistant to hygiene issues, and discontinuation of wiping/flushing after urinating (only a few times)

-eye tics (one day)

-bed wetting (once)

 

We are still seeing some pain/lethargy and a little bit of emotional lability. A tiny bit of OCD seems to be creeping in and out as well.

 

We saw Dr K today and his main concern was that she managed to get break-through strep even on the Augmentin. It is his abx of choice, and his questions were if she missed a dose or had stomach upset (to the point she would have lost the protection of the abx) and she had neither. Thus, he is changing her to Keflex. That was pretty much the sum total of the meeting with him today, although he did give us some other info that isn't relevant to Pixie, but to PANDAS in general.

 

-He is working with someone at Columbia U (I think- he talks fast!) who is the world's leading expert on strep, to try and figure out if PANDAS kids are reacting to a resistant strain, esp. with the breakthrough strep while on abx

 

-He will be at the Autism One conference, which we knew about via this board of course

 

-He will be meeting with 4 other drs (or maybe 4 including him- can't remember) in Washington DC in July at the Tourette's conference to lay ground diagnostic criteria for diagnosing PANDAS, which SHOULD mean that IVIG is going to be covered by insurance, as it will be more accepted because of this work (let's all hope!!)

 

 

Having said all that, I'm going to bet that we aren't completely cleared of strep. I just have a feeling. But we'll soon find out!

 

Sorry to those who have asked/posted and I haven't responded to. We're also putting our home on the market, so you can imagine what things are like here with a 2 yr old, a PANDAS dd, and a house that has to be show-perfect all the time, PLUS all of our food restrictions and constant cooking. I'm a little Okay, more than a little! HAHA!

 

 

Oh, ETA- He was surprised that she was not on a 14 day dose of treatment abx, so he didn't feel like the strep had completely been treated either, but we might get a false negative, so we are doing 14 days of Augmentin twice/day and THEN starting the Keflex, just to be on the safe side.

[thereishope]

Thanks for the update! We've all been thinking about you. When the strep broke through the antibiotics was she on Augmentin once or twice a day? If it was once, is that his/your theory why she contracted it?

[pixiesmommy]

She was on once a day (morning) and that is all he believes is needed for protection. I don't think we have a personal theory BUT I know she was doing a lot better while on twice/day Augmentin (Dr K did allow that in the past for a month or so at a time on and off when other family members had colds, etc. but not as a constant dose.) It makes a huge difference in her behavior/ability to cope, etc.

 

I'm a little nervous about the switching of abx, since I am allergic to everything. (I was on abx from about age 11 to 20 for chronic acute sinusitis.) Keflex was the first first abx I had a reaction to, and my mom is allergic to it as well. I can't do anything but sit back and try it though.

[Pandas_chicago]

Pixie - trying to PM you inbox full

[pixiesmommy]

Pixie - trying to PM you inbox full

 

 

oops! it's fixed now

[Suzan]

Very glad to hear your update. I'm so glad she is doing so much better but this strep is scary! I am glad it is backing back down and I hope it continues!

 

Susan

[zazuk2010]

She was on once a day (morning) and that is all he believes is needed for protection. I don't think we have a personal theory BUT I know she was doing a lot better while on twice/day Augmentin (Dr K did allow that in the past for a month or so at a time on and off when other family members had colds, etc. but not as a constant dose.) It makes a huge difference in her behavior/ability to cope, etc.

 

I'm a little nervous about the switching of abx, since I am allergic to everything. (I was on abx from about age 11 to 20 for chronic acute sinusitis.) Keflex was the first first abx I had a reaction to, and my mom is allergic to it as well. I can't do anything but sit back and try it though.

 

 

My son had an alergic reaction to zith (or at least we think that was it...all over body itching and then large hives covering his body) we switched to Bioxin. I was worried so for the first week I gave him a small dose of benadryl 1/2 hour before we gave the bioxin (we gave meds at night). After about a week we tried it with out the ben and he was fine. I also kept an epi pen near by just in case. He has now been taking the bixon for a week without ben and without any trouble.

 

Kari

[simplygina]

My son came down with an ear and sinus infection (and I think strep, but the rapid was negative because he was on abx) while on augmentin. It just doesn't seem to do the job for us.