karmen

I keep reading about Dr. K... can someone share some info on who this doc is... sounds like he has been helpful.

I am trying to convince my husband that we need to take Jake to the doctor. I completely agree with ALL your advice. He thinks that I overreact... I think he is in denial. He is concered about putting Jake on antibiotics all the time. He is the type that you don't fix the oil leak until the car is overheating and on the side of the road. Catch my drift. Does anyone know the side effects or how I convince him that this is necessary. I want to catch the cycle early before Jake ends up as bad as he was in July... shane is the type that it has to be bad first. AHHH... so frustrating. Anyone have thoughts on side effects of having your child on antibiotics all the time... data or research I can use as ammunition in my battle to get Jake the help he needs... Also.. can anyone explain the why of using steroids after the antibiotics...? Thank you so much for all your advice and help... It is crazy to think about how many kids are out there battling this and parents are completely unaware of PANDAS... I have talked with several people who had never heard of it. Crazy stuff.

Hi Buster, I must say.. I see you posting lots of helpful information... thank you for sharing your knowledge. Yes.. there are other clinical reasons for us to suspect PANDAS. His symptoms were are pretty rapid onset... in a course of a few days in July, I felt like I completely lost my son for a while. He began with compulsions to want to touch the tv, hit the tv with toys, opening and shutting doors, dropping things repeatedly. He would ask us to take toys away from him so he would not hit the TV. Then he began verbal tics... he was repeating "I'm Snow White... I'm not...######....I'm stuck, and Mom, your fat." He was embarrassed and could not figure out why he was saying what he was saying. He would run to his room out of embarassment and try to let his tics out there. He kept asking me.. "mom.. why can't I stop saying that?" He then began licking things... licking tires, the pavement, playground equipment, sand, public restrooms, and yes then he began putting his finger in the toilet then licking it. He even stuck his finger in his poop and licked it. We took him to the doctor and the doctor actually mentioned PANDAS.. his step culture and titer blood test was negative. But, the doctoer went ahead and put him on antibiotics anyway. Within a few weeks, his symptoms got alot better. He has never gotten as bad as he was in July, but my nephew also has PANDAS and I know that the symptoms of OCD/Tics will most likely return. So, in the meantime, I took him to an immunologist/allergist that was a parent recommendation on a PANDAS website. The doctor kept talking to me about allergy testing. I was confused about the relationship between PANDAS and allergies. His thought was that if we can help Jake's body fight the allergies, then his immune system will be boosted and better able to fight the strep. So, we have just begun with this process. Not all the tests have come back yet, but so far we have discovered that there are several inhalents he is allergic to. Also, he is allergic to potato, milk, tomato, and tuna. Since we began illiminating these items from his diet, it seemed that his OCD and emotionally eradic behavior improved. It hasn't been until this past week that he has begun wetting the bed again every night, is emotionaly eradic (got mad and threw our laptop), is scared to go to bed, is repeating stories and phrases, etc... I am wondering if strep is playing a role here... Since July we have not had a problem with strep or sickness much, so I have not really been able to notice a pattern yet. Anyway... any of your thoughts or advice are helful. Thank you! Karmen

I feel like I have so much catching up to do in figuring all this stuff out. I just got test results back also and am trying to figure out what is going on. I keep reading posts and are trying to piece information together. My son, Jake, who is 5 had a sudden onset of OCD/tics this past July 2009. He was diagnosed with OCD in August. I have been doing lots of investigating into PANDAS... Jake has been exposed to strep recently and the "brain bully" that is what we call it... is back. The results we got are: Cam Kinasse II 188 (into Pandas Category- something passing through BBB- I think) Anti-Lysoganglioside 160 (fell into normal range) Anti- Tubulin- (on the high end of normal range (noramal was 250-1000, Jake was 1000) Anti-Dopamine 1 (high-range was 500-2000, Jake was 4000) Anti-Dopamine 2 (Jake was 4000, within normal range) I am trying to wrap my head around these numbers... I also am thinking I need to go to the doctor to see if we can get on antibiotics. I had a bad step infection last week. I will keep reading posts to educate myself. I just thought I would put this out there to see if anyone wanted to respond to me directly to help me make sense of this a little quicker. Thank you for all of your thoughts... you all are so inspiring. Glad to find other people out there that feel just as frustrated and confused as I am .