Anybody have insight here?

[peglem]

I'm just going to give a series of events here- I'm confused as to what's going on exactly. My daughter just turned 15 a couple of days ago.

 

Sept. 1st- throat swab detected strep- she was on proph. zith at the time. May have been suffering from strep for a couple of weeks- the behavioral signs had been there- I just was so sure that the prophylaxis was working that I ignored the signs (enuresis, increase in ragey behaviors, messed up sleep schedule) and attributed everything to school starting up again. (which I guess isn't too far off since she gets exposure to strep there)

She was given a full strength course of zith, which may have cleared the infection, but did not improve symptoms, so she was placed on full strength Keflex.

 

But, while all this was going on, Cunningham test results (from the beginning of July- I don't think it was during an exacerbation, but very high 242% CamKII activation) were shared with her doctor and after contacting Dr.s Cunningham and Latimer, she was also given a 5 day course of prednisone.

Symptoms improved on prednisone, but...

On the last day of the prednisone, she began getting ill with what I think was a cold. Just as she was recovering from the cold, blood was drawn for an immune panel- low IgA and Low IgG4.

 

She resumed proph. zith, but at a higher dosage and frequency: 500mg, Monday, wed, Friday.

 

A few days later, she started her 1st ever period...that was 8 days ago and she's still flowing pretty steady. Symptoms have returned for the last 4 days-enuresis, ragey behaviors, messed up sleep schedule).

 

It just seems like there are too many variables here to think things through very well. Did the prednisone suppressing her immune system cause her to get sick with a cold (if that's what it was?)? Did it also cause the low IgA, IgG, which was tested a few days after the prednisone? In light of her recovering from the strep, shouldn't the IgG/IgA have been elevated? Did hormone fluctuations from the impending menstruation have any effect on all this? Will she ever stop bleeding? (okay, I'm pretty sure she will.) So anyone have any ideas on all of this?

[dcmom]

Yikes, peg- I feel for you. This is a lot to sort out, on top of puberty! My dd is only 6- but I have one thing I can share. My dd did well on the steroids, many/most symptoms disappeared, but her symptoms also increased during the tapering off. I attributed it to being exposed to strep at school (her best friend). So I think, while the steroids are great, for many they are extremely temporary depending upon other circumstances.

 

Your immuno doc should know if steroids will mess with the test results.

 

That is a really high camkinase #, isn't that in the range of sydenham's chorea?

[peglem]

Yikes, peg- I feel for you. This is a lot to sort out, on top of puberty! My dd is only 6- but I have one thing I can share. My dd did well on the steroids, many/most symptoms disappeared, but her symptoms also increased during the tapering off. I attributed it to being exposed to strep at school (her best friend). So I think, while the steroids are great, for many they are extremely temporary depending upon other circumstances.

 

Your immuno doc should know if steroids will mess with the test results.

 

That is a really high camkinase #, isn't that in the range of sydenham's chorea?

 

Yes, its above the mean for SC.

 

Her pediatrician ran the immune panel, and I'm not exactly proud of this, but I don't want to ask the doctor if its an effect of the prednisone, because those numbers are going to be used to make the case for IVIG (with the immunologist)....but, just a little research has been done into the effects of female cycle hormones on immune system and it looks as though those have quite an impact on the immune system as well....they just don't know yet what the implications are.

 

My daughter did well on the steroids- it was only a 5 day course so we didn't taper off. But, her PANDAS symptoms didn't return until a couple weeks off prednisone. It was what looked like a cold- runny nose and just not feeling well, that came up immediately following the pred...I'm assuming it was a virus, since she was on 1500mg/day of keflex at the time.

 

Should be getting that referral to the immunologist soon- pediatrician wants to contact him first to lay out the situation, explain everything.