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T_Anna

DS Spiraling is it an illness?

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Happy Holidays,

DS 14.5 and dx with pandas about a month ago has been spiraling this past week. Should I take him to a clinic or ER to have tests to see if he still has an infection? He tested positive for strep, mycoplasma and coxsakie. He was taking Augmentin, biaxin, anti viral and steroid burst. He seemed about 30% better, but now it all seems back to OCD and mood swings. What should I do? I have a phone appt with Dr. T Wednesday at 5:30, but that'll be almost three days before I get any answers/treatment for him. Right now he's not taking anything but Advil and multi vitamins.

 

T.Anna

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I would not go to ER, especially if no outward symptoms like fever, cough etc. Just my opinion but seems most ERs won't do much for you especially since he is on antibiotics. And sad but true they may not have any knowledge at all about this autoimmune disorder called PANDAS/PITANDS/PANS. That all being said -- if he has sypmtoms and your mommy instinct tells you he should be seen... I hope things ate better for him this Christmas day!

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Thanks. He took 10 days if each, but has been off since last Saturday (a week plus). He is still stuck in the bathroom, so I'm not sure how I would take him.

T.anna

 

T.Anna -

 

Sorry this is happening to you on Christmas! "Stuck in the bathroom" sounds so familiar, unfortunately. That's the OCD, I'd bet. I like the idea of taking him to a minute-clinic; hopefully, he'll swab positive or have a fever, and you'll be able to get another script that will tide you over until you can get back to your real doctor. Even if he doesn't have a fever or the quick swab comes back negative, I would try telling them that he just recently completed a round of abx for XYZ (strep?), and perhaps they will draw their own conclusion that the infection has not been entirely beat and write a script without your having to go into the whole PANDAS thing with them.

 

Just FYI, for quite a while, when we would end a course of abx and attempt to go without them, we could set our clocks by the return of symptoms on Day 8 following cessation of the abx! So even if he hasn't been beset by a "new" infection, it would not be unheard of for the symptoms to return about this time following a course. You probably need a 30-day course, at minimum, but you're unlikely to get a script for that from anyone other than a well-versed PANDAS doc. So, in your shoes, I think I would take what I could get from the minute-clinic and hit the phone lines first thing tomorrow for some longer-term assistance.

 

Hang in there!

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Happy Holidays,

DS 14.5 and dx with pandas about a month ago has been spiraling this past week. Should I take him to a clinic or ER to have tests to see if he still has an infection? He tested positive for strep, mycoplasma and coxsakie. He was taking Augmentin, biaxin, anti viral and steroid burst. He seemed about 30% better, but now it all seems back to OCD and mood swings. What should I do? I have a phone appt with Dr. T Wednesday at 5:30, but that'll be almost three days before I get any answers/treatment for him. Right now he's not taking anything but Advil and multi vitamins.

 

T.Anna

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Being stuck in the bathroom really is all too familiar. I hope that you were able to get some help. I agree with Nancy's suggestion. Minute Clinics are likely to be a far better choice than the ER.

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I would also skip the ER unless there is an immediate risk of danger to your son or your family, hurting himself or someone else. Most ER docs are not PANDAS educated (though they are learning) and there is an unfortunate current situation where Boston Childrens Hospital got temporary court custody of a PANDAS child and put her on psych meds, took her off abx etc. On the Saving Sammy Facebook page there is a thread of PANDAS friendly hospitals if you want to have as a backup plan.

I have been short twice of bringing my daughter to a hospital and fortunately both times antibiotics quickly brought her back. The waiting I have found to be one of the most frustrating parts of all this, waiting for doctors appts, bloodwork, abx to work etc but just try to hold on with the belief that everything will be ok.

 

Personally I would stop the multi vitamins. In my daughters case I found they made things worse, not sure why.

I think you posted on another post that the Lyme test came back negative. When things settle down it might be worth re-visiting this, most PANDAS docs and regular peds do not know how to read this test and it may be a factor, especially if you have a major flare after a steroid burst. Lyme is extremely complex. It causes immune havoc which is why there seem to be lots of kids with multiple infections. Many of the PANDAS treatments also treat Lyme so it's just something to keep on your radar.

 

Good luck and it's almost tomorrow :)

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Thanks. He was fine after he got out around noon, so I put off ERs, but now I'm pushing to get hold of Dr tomorrow. He is in the bathroom now and already upset and melting down.

 

Watching and waiting is really difficult.

 

Thanks for the support.

T.Anna

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Thanks. He was fine after he got out around noon, so I put off ERs, but now I'm pushing to get hold of Dr tomorrow. He is in the bathroom now and already upset and melting down.

 

Watching and waiting is really difficult.

 

Thanks for the support.

T.Anna

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Finally got in touch with the doctor this morning and he agrees that it sounds as though DS is battling another (or remaining)infection. The doctor placed him back on Biaxin and Valtrex. He would like to see if this help DS in the next few days, but also suggested we may consider Luvox (the therapist also think sthis might be worthwhile). In the meanwhile we are waiting for a blood work up order to see what is really going on PANDAS wise with DS. THe doctor mentioned that he might be a good candidate for IVIG.

 

What is involved with IVIG? Is it a hospital stay, outpatient? It seems that many people on this board have done it several times with their kids with mixed results.

 

Thanks again,

T.Anna

DS 14.5

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