Anyone knows a PANDAS ped in L.A?

[sf_mom]

I'm so glad you ruled co-infections out. I spoke to an immunologist at Stanford Children's Hospital that told me.... we see tons of kids that suffer from auto-immune and have fully intact immune system. So, sometimes it is a mystery...... AND, IVIG has definitely been very effective for us.

 

-Wendy

[ghostrider]

mycoplasma and Lyme we have not those tests. Dr Gupta was ok it seems he does not know much in to PANDAS so was looking at my kid's IGGs and referred us to allergy doc Dr Yel at UCI . PANDAS wise he was interested in titers so not sure how much does he knew or not , may be he is not up to date with all the new information. Let me talk to Dr Lynn next week and make a appointment . This thing is going no where and at time you feel helpless watching your kid.

[tapiash]

mycoplasma and Lyme we have not those tests. Dr Gupta was ok it seems he does not know much in to PANDAS so was looking at my kid's IGGs and referred us to allergy doc Dr Yel at UCI . PANDAS wise he was interested in titers so not sure how much does he knew or not , may be he is not up to date with all the new information. Let me talk to Dr Lynn next week and make a appointment . This thing is going no where and at time you feel helpless watching your kid.

 

Hang in there1 It is the worst thing ever seeing your child fade before your eyes. What is nice about this forum is everyone here knows exactly how you feel.Dr. Linn was great and gave up hope. He is expensive but not as expensive as others. He gives you the information to file an insurance claim. Be prepared. Pandas is an expensive illness.

[deby]

If strep titers are negative and Iggs are normal. PLEASE, PLEASE test for mycoplasma and Lyme prior to IVIG. Treating properly with antibiotics in advance of IVIG might make a huge difference in its ability to help.

 

-Wendy

 

Hi Wendy,

 

We got the blood test results back,

ASO=139

DNASE-B = 1360! super high

Mycoplasma low.

 

That means that probably he had strep around 8 weeks ago.

We are going to see an immunologist on Monday, in the meantime he was on AMOX, but my ped change it today to AUgmentin.

-With your knowledge, for how long he needs to be with antibiotic?

-the motor tics look better, but now the vocal seems to be worse. Any idea/advise?

-Can the high titers could be the reason for other infection that it is not strep?

-Do you think I should do any other recommended tests at this point?

 

Thanks!

Deby