Still in exacerbation

[KaraM]

Hi,

 

A little background reminder. My dd8 was diagnosed with OCD a little over a year ago. We determined PANDAS at the end of March. We see Dr. B. She's been on Zithromax ever since. She had a great summer and early fall - got close to 100%. In November/December we started to notice a decline. Thought it might be due to a switch from liquid (200mg/day) to pill (250 mg/day) that we made at the end of Oct. But then figured out her brother had strep. He started abx a week or so before xmas. Dr. B. said dd8 should improve as brother was treated, but if she didn't we could increase her Zithro dose.

 

Well - no improvement after first 10 days or so (my numbers might not be exact). In fact, slow decline. So we switched back to liquid (200mg). We gave it 5 days, still no improvement. We upped it to 350 mg (her original treatment dose that she was on for a month) on Monday. She's still not getting any better - slowly declining in my opinion.

 

We also give her ibuprofin in the morning and after school. I'm uncomfortable that we've been doing this for a couple of weeks, but don't know what else to do. I don't think our pediatrician would prescribe a steroid burst. And I'm not sure I want to go down that path. We don't see Dr. B again until the end of February.

 

I've had her blood tested several times since March and both her ASO and Anti DNase B have been going steadily down. Her most recent draw from 1/3/11 were ASO 78 and Anti D Nase B 292.

 

She seems pretty healthy herself - other than PANDAS symptoms. Doesn't seem to be having any major colds, etc (of course as I say this now, she just walked in the room with a stuffy nose...). But still - she really hasn't been sick herself.

 

DH had a blood draw to see if he was carrrying. I still need to do that, too.

 

So - I guess I'm wondering if we should be testing for anything else? Should we do a throat culture on her anyway? Last Dec. she had a throat culture, but it came back negative. A few months later, she had positive ASO and Anti DNase. So I guess I'm not sure bringing her to the doc for a culture is worth it - especially since she has a fear of germ contamination and doc's office.

 

Any thoughts/advice?

 

Thanks,

Kara

 

 

[LNN]

At the risk of fur flying, have you done any testing for things other than strep?

Can you articulate your concerns about steroids?

Does the ibuprofen make a noticeable difference? there are supplements that can help the liver (milk thistle? charcoal, others?)

Is DS better now? Has he been re-checked to make sure infection is cleared?

 

My heart breaks for you guys. Is she still going to school?

[smartyjones]

hi Kara. i know it is so disheartening when a child has been doing well and begins to backslide!

 

you're asking the question, so my answer is yes, i would suggest checking for other infections, if she is not doing well or is backsliding. have you ever tested for other infections or just worked with strep? my ds had clear strep indicators -- high titers and positive culture. then, 100% remission on keflex. when off the abx, he backslide. when we investigated further, he did have other infections.

 

i do think it can be "just" pandas with an "S" but when kids are not healing, it can be wothwhile to check.

 

at the OCD conference, i was struck that almost all the drs said they were aware it was not only strep causing the troubles.

[eljomom]

smartyjones---other than strep, myco p and lyme, what did you have tested?

 

hi Kara. i know it is so disheartening when a child has been doing well and begins to backslide!

 

you're asking the question, so my answer is yes, i would suggest checking for other infections, if she is not doing well or is backsliding. have you ever tested for other infections or just worked with strep? my ds had clear strep indicators -- high titers and positive culture. then, 100% remission on keflex. when off the abx, he backslide. when we investigated further, he did have other infections.

 

i do think it can be "just" pandas with an "S" but when kids are not healing, it can be wothwhile to check.

 

at the OCD conference, i was struck that almost all the drs said they were aware it was not only strep causing the troubles.

[KaraM]

Thanks everyone for your replies.

 

We did have a complete immune workup (including Lyme) done last March and strep was the only thing that Dr. B remarked on, other than a lack of response to the Prevnar vaccine (which in the end was because she had only received 7 of the 21 whatchamacallits and low Tetanus (she's due for a booster).

 

She was also tested for myco P in addition to strep in December. All negative.

 

I'll ask Dr. B to send another order to do it all over again (or whatever he thinks makes sense).

 

I'll take LLM's recommendation to have her brother re-tested to see if it clears.

 

As for my steroid reluctance - I'm afraid, more than anything, of making her any more hyper than she is and exacerbating things. I know they are supposed to reduce inflammation and help make things better, but I've heard others say it hasn't worked.

 

Any other thoughts?

[NancyD]

Kara,

 

Did you do the IGX Basic Co-Infection Panel too? if not, you may want to do that. Also, I would steer clear of tetanus booster now -- and if and when you do it, make sure no mercury. Some have it in it. Check manufacturer and ingredients.

 

Nancy

[dcmom]

I will add that steroids have been a really important tool in treating pandas on our end. They have pulled us out of crisis a few times. We have not had any major symptoms/side effects while on them, quite the opposite actually.

 

We have had one exacerbation in my daughter that needed steroids, due to several strep exposures.

 

I am all for searching for underlying infections- am working on that now.