New and needsig advice

[jenact64]

Hi all, I am new here and this is the first time I've posted... worried and seeking answers. I am pretty certain our DD 10 is coping with PANS and has been for three years now. We live in Ohio and are waiting to schedule an appt. with Dr. Carine to get a confirmation (sent the paperwork yesterday.) Our girl is sick now (or flaring), though, and I am trying to decide if I should wait to see someone at Dr. Carine's office (which could be weeks still) or if I should push it at our own pediatrician's... Have not had much luck getting them to take my concerns seriously so far. They did a strep swab last week and it was negative, but she's complaining of nausea, has diarrhea, a low grade fever, and is crazy pale. Her face also looks swollen to me and she says it hurts. Dark circles under her eyes, also. I hate seeing her feeling so lousy, but if the swab is negative I'm not sure what else to ask for. She presents atypically for strep, and we recently pulled her from school to do HBI after a long bout of school refusal that started with mycoplasma in September. Thanks for any help.

[bobh]

I would say that even though you are fairly certain she has PANS and your pediatrician is not taking that seriously, because some of her current symptoms (diarrhea, nausea, pale) are not specific to PANS per se (as I understand it), you are best to take her in sooner and not wait.

My own strategy with a non-PANS believing doctor in such a situation would be to be mum on PANS/PANDAS, and just let the pediatrician assess and treat what the symptoms that are presented.  Your daughter could get treatment for something that could be important to catch earlier.  Also, even with a "no mention of PANS" strategy, the doctor might do some tests that are helpful for PANS.

[MomWithOCDSon]

I second bobh's suggestion and would add that, since your DD presents atypically for strep, if the swab comes back negative but she can tolerate a blood draw, I would ask that they test for strep titers (ASO and anti-d-nase b).  WIth an atypical presentation, this should be a standard second step with respect to strep, but not all pediatricians will go there without a nudge.  Still, you can make the argument, without even mentioning PANDAS/PANs, considering her history.

Good luck!

[jenact64]

Thanks to both of you for your replies... we have been putting off a blood draw because I know it will be awful and I will need my husband on board, but it's time... We had an awful morning today... the homebound tutor was due for the second time and DD went utterly berserk on me for about 45 minutes. After ripping her favorite shirt in half, she kept repeating, "It's just a dream, not real, not real," over and over again, and clawing herself in the hand to 'wake up.' It breaks my heart to see her that way. Hours later, aside from a mild fever, she seems fine for the most part, but *I* still feel like I got hit by a train. Hoping we get some answers soon. Our regular pediatrician ordered some labs; I just need to see if Dr. Carine will order the same ones, or if we need additional tests.

[CozICan]

Hi - I know it’s a while ago that u posted & hope your daughter has received some relief from her PANDAS since then? Anyway, we have a 10yr old son with PANDAS & he’s flared up recently after gastro vomiting bug a month ago. We’ve been using anti-inflammatories (along with Abx - Augmentin Duo) each day since the flare began & it honestly does help. Highly recommended. Apparently the peak flare ups happen 3-4 weeks after the infection (gastro) & that was very true for us.

Re atypical Strep - being in the USA you should have access to the “Cunningham’s Panel” a pathology test devised by Dr Cunningham in 2013. It was designed  to test for other mechanisms involved in PANDAS other than just simple Strep titers. Sadly we can’t get this panel done in Australia yet. It’s an ongoing battle. Anyway I hope this helps in some way. 

There is is some recent research about treatments for PANDAS in the Journal of childhood and adolescent Psychopharmacology (Vol 27, Issue 7) that night also help you. I found it on the NIMH website & also PANDASnetwork website.

All the best 😞