SOS: Exploding children!

[thenmama]

xx

Edited March 26, 2013 by thenmama

[thenmama]

xx

Edited March 26, 2013 by thenmama

[MichaelTampa]

Yikes, Feb.10 has got to feel like a long way away given the current situation, so sorry!

 

In terms of managing in the short-term, from what you describe, it seems what antibiotics she's on or not on, and perhaps dosage, will make all the difference, and I would focus on doing whatever you can to try to adjust that to a more stable state. I'd suggest you consider that more or less antibiotics might help, either way. If the problem is primarily PANDAS, maybe more or the right drug is what would help most, although I imagine the PANDAS parents have much more knowledge about that than me, as I'm on this board for myself the patient (not a child). Another possibility, particularly if this is lyme related, is the antibiotics are causing a herxheimer reaction, killing too much infection too fast, and maybe backing down to a lower dose would help.

 

In the long-term, if you haven't evaluated lyme as a possible cause, I would suggest it. One prominent lyme doctor (Dr. Klinghardt) believes 90% of autism is actually lyme disease, and since your son is diagnosed with autism, there is a chance that autism is in your family. To get going on that, you might consider western blot and ELISA lyme tests. IGeneX is better than LabCorp, LabCorp is cheaper, so there's a bit of a trade-off there. And also consider the CD57 test (only at LabCorp), some think not useful for kids, others think useful. You can get some information also by testing yourself.

 

Good luck!

 

Michael

[peglem]

Dr. L consulted with my pediatrician even before she saw my daughter- we didn't even have an appt. yet. She just talked with him about PANDAS treatment in general. That was over a year ago though, so maybe not the same policy now. We did see her in January 2010, and she did another consult w/ pediatrician in September or October of this year. Just have your pediatrician call her, she may very well call back when she has a chance.

[Megs_Mom]

Since Azith worked, and you are not currently on it (correct?), I would try that for dd. Do you think your local doc will prescribe for your dd until Feb 10th, knowing he is off the hook at that point?

[sf_mom]

Her worsen of symptoms shortly after stopping antibiotics could be a sign of Bartonella infection... within one to two weeks.

 

"Symptoms include: Psychiatric disorders of all kinds, rage attacks, anger, cutting behavior, etc." Dr. Ann Corson pediatric Lyme specialist.

 

Combo antibiotics like 'Azithro/Omnicef' is typically used to treat, all size appropriate dosages.

Edited December 29, 2010 by SF Mom

[thenmama]

xx

Edited March 26, 2013 by thenmama

[SarahJane]

Hey...I hope your dr's appt went well yesterday & that maybe you got more abx since they did seem to be helping. I don't really have much to offer in ways of coping skills or advice but just wanted to offer my support. Certainly looking at other possible infections seems plausible. It's hard too because you're still waiting for the dx, so you're still in the land of "is this PANDAS or something else?". Dr. L seems to be the closest to you, & I don't know that any of the dr's particularly specialize in a certain type of PANDAS patient despite their different specialties. Here's hoping that your family sees some quick, lasting relief & that the new year brings better health & healing.