For those that have followed our story...

[Tenacity]

Thank you for your report! How frightening, fascinating, and revealing it is!

 

Just think what we might do to help our sick kids, if every doctor would really listen to our reports and treat them as the goldmines of essential empirical data that they are! We are the "soldiers" in the trees and in the trenches, hour after hour, day after day. Woe to the "general" who refuses to listen!...

 

Tenacity

[forjpj]

So glad things are on the upswing!! Thank you for sharing your story!! My ds10 has pandas, and currently we are starting to have concerns that my daughter, and my sister's two children might also have it. One we suspected, but the other two are surprising, and presenting in totally different ways. Needless to say, they play together a lot. I might have to ask you more questions in the future!!

Sarah

[sf_mom]

All the children in the cluster are presenting in unique ways.... my older son predominately TICs, my younger son predominately OCD, my younger daughter separation anxiety, physical symptoms 'rashes and frequent illnesses', aggression (biting), Adrian predominately OCD (Tic resolved after first IVIG and never reappeared), P.J. predominately AD/HD, defiant behavior and now TICS.

[trggirl]

SF Mom, has anyone told you what the sandpaper rash was? My daughter has one on her cheeks too. Most people don't even notice it is there.

[sf_mom]

I've always assumed the sandpapery rash to be scarlatina rash. Although I consistently pointed it out to Dr.'s nobody give me a clear cut answer. Does your daughter have it on the back of her arms too? Those are the two places cheeks/arms it seems to want to persist on both of the twins. We are getting very close to it resolving entirely. I'll be thrilled when its finally gone.

 

 

 

SF Mom, has anyone told you what the sandpaper rash was? My daughter has one on her cheeks too. Most people don't even notice it is there.

[Stephanie2]

Thanks for the update SF MOM! I will be following your story, as there are not many of us on this forum with "little ones" who have pandas. It will be interesting how they fare as they get older. For now, glad you have some peace in the home!

Stephanie

 

Brief overview: Playdate in 2007. Adrian had RF and P.J. had an active strep infection when we all got together for a playdate. Adrian and P.J. most likely shared the same strain of strep because parents are dating and they had spent the previous night together before meeting up us. One week later my older son got very ill for 5 days but seemed to recover on his own. One week after that our younger son (6 months old at the time) became extremely ill, hospitalized for 6 days, diagnosed and treated for Kawasaki's hdIVIG 2 m.g./kilogram over two days. He was not checked for RF. My older son's symptoms were identical to my younger son's BUT EVERYONE AT THE HOSPITAL told me Kawasaki's wasn't contagious. 6 months later older son had first tic, one year after that full blown PANDAs and sudden on-set.

 

DS1 - 6 years old: CaM Kinase 127 (blood drawn 11 days post steroid burst) is 98% recovered after 3 hdIVIG treatments with Dr. Kovacevic,

 

DS2 - 3 years old: CaM Kinase 148, improving TREMENDOUSLY on antibiotics - Azithromycin 200 m.g. per day

 

DD - 3 years old: CaM Kinase 157, improving on antibiotics - Azithromycin 200 m.g per day.

 

Adrian - 6 years old: CaM Kinase 147, improving, 1 week post 3 hdIVIG treatment with Dr. Kovacevic. Adrian had Asperger 'like' traits and was by far the sickest through out his young life.

 

PJ - 7 years old: CaM Kinase 126 - Anti-DNase-B high 300s, NOT CURRENTLY BEING TREATED. Clinical symptoms AD/HD, restlessness, inability to sleep well, separation anxiety, transient eye tic, periodic suicidal thoughts, extreme acrophobia. WITHIN THE LAST THREE WEEKS: PJ has taken on a regular breathing/sneezing TIC per his father (I have not personally seen him yet).

 

Anyway, my children are not full biologically related.... I find it highly unlikely that all five children would have a predisposition for PANDAS. We live over an hour away from Adrian and P.J. and the kids play with each other very infrequently (once a year... maybe).

 

-Wendy