Mary M

We're sharing your experience right now as well. How many tears can we all collectively shed? Thankfully we have each other...Before I knew about this group, alone was sheer misery...at least crying together is better than crying alone.

I am so sorry. Some days I just wish the doctors and insurance companies would spend a few days at our house to live with PANDAS.

I am so sorry for you and your daughter. After our difficult day today...I worry for my daughter's future as well. None of us should ever have had to experience what we are living with. I hope your IVIG is approved.

So glad to hear some positive news. We were able to schedule our initial consult with Dr K for May 26. It is reassuring to read your post.

Everyone in our house takes some form of omega 3...including our PANDA (who presents with massive OCD with minimal tic behaviors). We all used to take the Carlson's lemon fish oil but even I had to stop that...just couldn't put the spoon into my mouth any more. We make all salad dressings with flax seed oil and olive oil. Those in our family who can swallow a large gel tab take Carlson's cod liver oil soft gels. Those who can swallow/chew a small gel tab take Carlson's chewable DHA-bursting orange flavor or Nordic Naturals. One dd who can't swallow a pill or manage the taste of the chewables takes Coromega 3 squeeze (it's like a little pudding in a squeeze tube). We've tried Barlean's Kid's Omega burst fruit chews (they are like a starburst) and we've tried GUmmy Omegaliscious sour raspberry-a gummy with a little sugar sprinkled on the outside. So there are plenty of alternatives to the actual oil....it's just matter of finding one that suits your family's taste.

Did your daughter start Augmentin XR based on the possible PANDAS dx or has she had strep recently? The abx were started due to titers being elevated and our ped considering PANDAS dx. Dd was rapid tested on Tuesday and that was negative but her titers from 2 weeks ago were both elevated (ASO=235 and AntiDNAse=600+ I can't remember the exact number--this was the number the ped was most concerned about). Titers were drawn again on Tuesday and ASO decreased slightly over the 2 week time frame but we don't have the AntiDNAse results back. Ped considered PANDAS 4 years ago and now we're back and the ped is sounding more confident about the dx. My dd has never had symptoms of strep but obviously has an antibody response to strep. She also has allergies and just needs to stand near someone with a cat to react so I think her body is proving it's heightened immune response in multiple situations. I just wish we could have put the pieces together sooner. Mary M

So sorry for you. But, I am impressed that you are so attuned to your kids that you could see the behaviors and know...I hope the abx make a difference. Mary M

I am new to the forum. My dd may be dx as PANDAS after having the dx considered at age 7 1/2 and now again. We just learned that a girl on her gymnastics team has had recurrent strep within her family (including her dog) for quite some time. Due to the holiday break, dd has not had gym for 9 days, PANDAS symptoms started to abate 5 days into the break. Gym starts up again tonight. She is on Aug XR (today is day 3 of 20 day dose). Is symptom abatement simply a coincidence or is the strep at the gym an issue? Thank you for this group, I have learned a vast amount since I joined Monday night, Mary M

Our prayers are with you.