marylandmom

Oh yes! We had this a lot last summer during an exacerbation. Though, I DO think she has always been sensitive to the light. But I know it was really awful during the PANDAS axacerbation. We did buy her some sunglasses and had, some, luck getting her to wear them.

No major tics here, either. Dd(8)In an exacerbation we had major separation anxiety, paranoia, ocd, depression, dilated pupils, rage, mood lability, and a major handwriting deterioration. Once examined by Dr L she pointed out some chorea I had never noticed ( in her toes) and a lot of hypotonia ( which I notice all the time now!)

Hi John, we live in Maryland as well. Silver Spring. We have seen Dr Latimer twice, she is great. They had us wait until our first appointment with her to have any bloodwork ( besides ASO her pediatrician had ordered) done. Dr L did order her Cunningham. We had to wait a while to get in to see her but she was WELL worth the wait. I would be happy to chat with you more if you like about her. Just send me a PM. Marylandmom

We do not either. Low ASO but high CamKinase ( 157)

Saw Dr L last week to go over my dd ( 8) scores. Cam 157. ASO was 25 ( yup, nada). ALL her other cunningham's were on the absolute high end of the "normal range" just like your daughters. Except her Anti-Dopamine 2 was totally in normal ( low) range. Dr L, said , YES Pandas ( surprising since dd has been SO responsive to 20 mg Prozac as most Pandas kids are not) And that , from her experience reading Cunningham results, kids who are OCS/Sensory Pandas tend to have normal everything and kids who have serious Tics DO have high Anti Dopamine 2 levels.

Awesome! Good for you AND your son!

Hi, okay Forum, we need to help here. Who knows who tradmein needs to see close to NJ? Dr T?? Who has his contact info?

Thanks Norcalmom, that was a reallt good explanation! I have read and re-read the Cunningham test info trying to understand what my dd (8) camkinase of 157 meant. This is very helpful.

Dr L is a neurologist. She is not just PANDAS specific. She will look into everything. We live in Maryland. I recommend her, highly.

In our follow up with Dr L today we discussed the possibility of taking out my dd tonsils IF we get another strep infection that leads to an exacerbation. I would like to know if anyone else has done this.

We had our follow up with Dr. L today. She confirmed ( via all our bloodwork)what I have known was PANDAS since discovering it over the summer. She told us to get the flu shot. She said she and Dr Cunningham had spoken about this topic and that the auto-immune response to the vaccine will be considerably LESS than her auto immune response if she were to get the actual flu/H1N1. Of course, there may be kids out there in an exacerbation who could not tolerate, even, the vaccine, I suppose.

Yes, I would love a copy of this sheet, as well. Anyone know where we can find it?

I think someone on this forum had referred to it as "akesthia"?

If you can get a copy of his chart records from the pediatrician that would be helpful. At minimum, all the dates of strep infections and the antibiotics given at every strep infection.

Has he been on ANY antibiotics? Where do you live?

Thanks so much for your replies. I will be cutting and pasteing this for my conference ( private school so no IEP, etc to back me up) to "prepare" dd(8) teacher should this PANDAS rear its ugly head again. I have had too many years ( hindsight IS 20/20, right?) of school were things are going well and BAM teachers are looking at me like, "WHAAAAT IS GOING ON?!" At least now I have a talk track.

I remember seeing this back during the summer. Someone had been nice enough to write it and post it. Does anyone know where this is? I need it for a conference tomorrow. Thanks

Does anyone else's child do this? We have been noticing that our dd(8) has been spending a lot of time upside down lately. Laying around the house she will lay with her head off the coach. Sitting in a comfy chair she will get herself all bent over backwards and hang with her head over the side ( like she wants the blood to rush to her head). It seems to be only when she is tired but has anyone else seen this in their kids? When we ask her she just says "it feels good". Okay........?!

Hi there! We also had one treated as carrier, and in general none of my kids show symptoms. So if you see your PANDAS dd ramping up, check everyone in the family. It has always been the case for us when PANDAS ds starts going downhill, we find someone has strep without symptoms. Also, see you are in Maryland (right?) I would check everyone for Lyme Disease via a Western Blot. We all kept getting strep and now it turns out a number of us (including PANDAS ds) have Lyme, and I do think this is the reason we kept getting sick. Is the "western blot" different from a lyme test Dr. L would have pulled? She did a series of blood work for our dd(9) at the end of the summer and lyme came back negative. She also had us do the Cunningham test (just got half of those results back----no shocker there, I KNEW it would be high). Still waiting to get the rest of those results. In the meantime I am not sure what to even "do" with the CamKinase results. Since we are not in an exacerbation right now ( and we started some prozac that has REALLY HELPED) I am not sure what to do. I guess now that we have some "confirmation" ( can we call it that?) we know to go see Dr. L next time we start to ramp up.

Hi, thanks for your response. By "treated" do you mean a session of oral antibiotics or something else? When we realized my dd(4) had it ( no symptoms) and had, basically, been passing it back and forth to my older dd the Dr gave all of us oral antibiotics. We had to go through two to get it right on the younger dd and we had everyone tested to ensure it was GONE. So, is that enough or is there something else we should do?

Hi, we have a dd(8) who we just received Cunningham Camkinase results( 157). I have little time right now and will elaborate more on our past 8 months of craziness later but here is my question... we determined that our dd(4) was our "carrier" this summer. Everyone in the house has been treated to get rid of the strep.......but the pediatrician the other day alluded to the fact that now that our dd(4) has been cleared of the strep, she is no longer the carrier. Is this true? Or should we expect that her future strep outbreaks will be assymptomatic as well? Thanks