Here Goes... My son's Cam Kinase Results came in

[Debbie1]

Judy,

 

I think (someone correct me if I am wrong) that Dr. K. does believe there is a difference if treated before and after puberty. However, Dr. L. does not agree. In our case, she was not recommending IVIG or PEX yet despite my dd's age (her symptoms were relatively mild compared to others) and felt that if we needed it down the line, it would still be as effective. At this point we have used steroids and abx. If she thought we were ready for IVIG or PEX right now, I would jump at the opportunity. But it is comforting to know that we are not working against the clock.

 

Having 2 children with PANDAS (ages 8 and 12), I can say that my younger one (who was more severe) seems to recover faster than my older one. That does not mean the older one will not recover, but that healing may take longer. After a steroid burst in December 2008, my dd (then 11) got back to 100%. We (and Dr. L.) have the same expectations from her most recent exacerbation. Just keep in mind that healing the brain takes time and it may take longer with an older child.

 

I'm glad you are on the right path.

Debbie

[memom]

Judy,

 

I remeber how I felt when my 17yo Pandas daughter's CamK score came back in September. Many of the same feelings you so articulately shared. Once I had concrete numbers to validate what I already felt in my heart, I got angry and motivated. It gave me such focus to find a healing path that focused on the real root of her issues that she has had for years.

 

I want to give you hope about the age thing. At 17, there are few on this board in our place. I want you to know that with removing her tonsils (abscessed, repeated worsening throat infections since 14 yo), starting steroids (week 3 now) and augmentin twice daily, she is getting better. We were at rock bottom throughout her Junior year of High School last year (unable to read and write for the first semester!) and now she is almost keeping up with her classes. The recovery in the beginning is painful and slow with setbacks peppered with gloriously clear days (clearer than I even remember). We are not at 100%, but maybe 50% with just 3 months of aggressive anti pandas treatment (after a full hopeless year of Phych and ERP, she was so bad she couldn't even participate in the ERP, her brain wouldn't allow it).

 

I write to give you hope that your son will recover. You may take a year or more once you get aggressive with your focus. We are pulling everything we can find into our toolkit for treatment because we too have wasted so many years. We will consider PEX if we need to.

 

The bad days are hard to deal with when you start seeing good days. Be patient and hopeful. Know that you are not alone. We are all in this together. Find strength in the wisdom of these amazing people on this board. They are a bright beacon on my path.

 

Here's to recovery post puberty!

 

Ellie