15 yo DD possible PANDAS variant

[Iowadawn]

Hi all, from a snowy Iowa!

My gut hurts from instinct!! My 15 yo's DD doesn't have "stomach issues", like reflux, too much acid,feeling like you want to throw up, effects of years- with a PANDAS brother--SHe has strep!!! And has had. 756/5700 Those numbers are real! MADE them send the AntiDNase B on to the reference lab as it had topped out at >1360. I shrieked when they phoned with the real results. All of us were cultured for strep following Evan's IVIG. She came back with very light strep. I made them treat her. Hmmmm. Two days in the tummy issues subside. Two days out, tummy issues return. Simple. Well, h. pylori is killed by the same abx. Time to draw blood. I inquired about a possible strep connection with the stomach at the time we got the culture back and need to check this out. Doc felt it was typical acid stomach issues. We returned after symptoms returned at the end of round of abx. I insisted that the strep be checked along with possible h. pylori. I WAS RIGHT.

 

I emailed drK since he treated our son. He asked about anxiety. Yeah, there's some anxiety here. The counselor we see picked up on that. I explained what we had been seeing with her & what the counselor has seen/heard and he feels sshe may have the first symptoms of adolescent/adult variant of PANDAS. He referred us to his website and the adol/adult variant and she does fit the bill. We commented to each other that it seemed she did mellow out while on the 10 days of Amox. I went back to our GP armed with email coomunications from Dr. Cunningham and now have her on 250 Zith/day x 30 days. Dr. K wants to see her. Back to Chicago we'll go as I am just plain tired of PANDAS. He says he can probably get her in before Christmas. We have been dealing with PANDAS behaviors for 9ish years before IVIG in Oct. My heart hurts thinking how long these two could have been ping-ponging! My boy's titers were very high, but not this high. Our son got awful. Dr. K says that IF it is the adol. variant it is much easier to treat.

 

BTW Our son is 11 weeks out from IVIG. we continue to see improvement in the ability to express himself, what's bugging him, use of coping skills, more pleasant demeanor, ability to not get so stuck in his thinking, acts more like a true 10 yo. Volatility has improved-it's much better. His ability to occupy himself, find something to do is getting there. He was invited to his first birthday party and went today. He had a ball. Now he can't wait to have his in March! I am not naive enough to know we have bumps ahead. These post IVIG weeks have been bumpy. Dr. K is now working with our psychiatrist and they have started to wean him off the drugs he is on. Crossing our fingers & toes while we pray. So far, so good.

 

Any word of wisdom, anyone. Buster, anything to offer?

 

Dawn

[nevergiveup]

Plz keep us infomed with what dr k says about your dd. What does your local doc say as to why your dd's antidnase is so elevated?

[sf_mom]

Wow, unbelievable. Did you get her CaM tested or have you just been communicating with Madeleine about her ASO/Anti-DNAse-B numbers? I'd be curious to know what the CaM number is in relationship to such high ASO/Anti-DNAse-B. I'm so glad you have such wonderful support with Dr. K

 

Frankly, Dr. K has saved our family from YEARS of heartache and we believe we'll see full recovery for both our boys. I will be forever grateful for his willingness to listen, understanding and knowledge. We are on the opposite extreme our youngest son is only 2 1/2 so a very early diagnoses for PANDAS.

 

-Wendy