We just got additional CaM Kinase results for our daughter

[Buster]

Hi Wendy,

 

Just a quick note that I share your perspective on the 100% and give thanks every day for the first psychiatrist who wondered if we had tested for strep. I also feel terrible for the children (and their parents) who are coping with OCD and haven't found treatment that works.

 

I still recall March 2008 googling "strep, anorexia nervosa and OCD" and out pops PANDAS. I remember how surprised I was that the doctors were willing to prescribe Lexapro, Ativan, Klonopin and wouldn't give us antibiotics without positive culture. Thank goodness, she was positive and showed significant improvement 20 hrs after starting antibiotics. There were a lot of variables at that time so we systematically started removing variables to figure out what was going on.

 

The folks in the hospital were trying to explain that we would need to give long-term psychiatric care and possible institutionalization of our daughter. There was no way we could accept this. It just didn't make sense. This wasn't some slow progression, this was a light switch effect -- absolutely wacky behavior. There had to be a tumor, a medical reason. A cause.

 

So I too agree, get the tests, check the family with throat cultures, help turn the Cunningham tests into a diagnostic test, write letters to the NIMH to fund more research... but most importantly trust your gut. Don't give up searching for a cure.

 

Each story where children get better is a joy. I hope that we find the right diagnostic steps to help doctors who doubt PANDAS be like the doctors who didn't believe that Sydenham Chorea is caused by antibodies to strep.

 

Buster

 

I am not sure what is up... just confirming his perspective to reemphasize Dr. K's position on clinical presentation for those trying to figure this out for themselves. So, yes, exactly what Buster was saying.

 

AND, I just happen to believe my children are sick 'just sick' and I'm not worried about the worst case scenerio anymore because there is way to make them better that is working. I am focused on making them better in the best possible way I know how right now. If I can share what is working and it works for others that is great. I will be forever grateful to those Dr.'s that have helped my family.

 

And, you are right, one size does not fit all. BUT, please grant me the opportunity to say 100% is achievable..... Saving Sammy is great example and we should be focusing on those successes.

 

-Wendy

[momofgirls]

I just wanted to add a little "me too!" to the discussion. Buster your recap hit home here as I remember when my daughter suddenly became ill about a year and a half ago at the age of 5. I really never thought anything was wrong untill that age. She was ticcing and suddenly became very fearful of windows, doors, any loud noise and feared that people were coming into our home while we were away to shine our door knobs! It was so strange and every doctor we saw just explained that sometimes OCD just comes on suddenly out of the blue and that we should try prozac and counseling. We did try both but it never made any sense to me how a normal child can suddenly go nuts...I pressed neurologists for SOME kind of blood work...anything! I too thought maybe even a tumor because it was just out of no where. No one ever mentioned PANDAS and we were told it was just a chemical imbalance.

I hesitate to post an update on our daughter because it is still early in her treatment but for the sake of others I will share our experience.

It has been 10 wks since her first IVIG (low dose) and 6 wks post her second (higher dose) and 2 wks since her last treatment (another high dose). She has had 3 in total and over all is doing very well. Mild if any OCD remain and still more persistant but mild tics. It was very bumpy especially after the first two treatments but this last month has really been better. I feel like we saw worsening of symptoms initially after each treatment followed by improvement. The last ivig seemed to have less of this and have settled a lot of her tics. I am comfortable saying that she has made good progress but I am hoping for more improvement as we get further along. We are doing monthly ivig with Dr Bouboulis and he has been really great. He feels she will beat this and says we will continue treatment untill she is symptom free. I am optimistic that the ivig is doing its job since she recently had a cold followed by a stomach flu and we did not see an increase in symptoms. I watch her very closely for tics because that is her main symptom now but my husband has a much more casual approach and says he thinks she is almost symptom free! It is a good sign because he has seen her at her worst. I am so hyper focused that I am not satisfied with the slightest blink.

Hope this helps anyone else trying to make decisions. Best to all!

Kim

[dcmom]

Momofgirls- That is wonderful news! It has made my day! PLEASE keep us updated, esp at 6 month and 1 year mark. I am planning on bringing my girls to Dr B soon- but want to see that monthly ivig is working for some, before we consider it.