Joan Pandas Mom

That's interesting. I think it was the skin prick we tried to do. It was about 10 or so small needles. When she heard he was on an abx she didn't proceed with the test. Joan Pandas Mom, what allergy testing are you wanting to do? I ask only because my dd's did not have to go off their abx for their skin prick tests. They did have to stop all allergy meds (except nasal steroid sprays) for 7 days prior. Susan

Can people have allergies to mold, dust, etc (spring) without any other symptoms except very ramped up PANDAS symptoms? My son never had the typical strep or mycoplasma symptoms either--only huge PANDAS symptoms. We can't test for allergies until we are off abx's and that isn't for at least another year.

I'm so sorry this is happening. I really think it is the time of year. Over the last 1 1/2 my son's symptoms have REALLY ramp up too. It seems to be worst in the fall and spring. I haven't been able to test him for allergies yet though because he needs to be off abx's for 10 days and that isn't going to happen soon. He doesn't have the typical runny nose, itchy eyes though. He has bad, bad PANDAS symptoms.

My son had a lot of what was mentioned above. It really helped him to be able to leave the classroom and go to the nurse and take a break, have a snack if he had to. I think we had an accommodation for him to be late. It would many, many times take forever to get out the door. Someone told me the school needs to supply a laptop if the student is having trouble writing. My son would rewrite words too and his hand writing became illegible, but the compulsion then went to the keys on the keyboard. I ended up buying him a program that he can talk into the computer and it types! We would spend hours on homework, it became impossible. The 504 left his completion of homework up to my discretion. It was graded on effort not completion.

In previous posts there were ?'s about whether or not Dr. B. actually orders the IVIG or takes the orders from other docs. Does he order them too?

I was wondering the same with my son. Two Neuro's thought it could be possible. Two Pedi's thought it wasn't. I am going to go ahead with the ECHO anyway to make sure his heart is OK.

Thank you guys. I'll call Monday. I really would like to go and might end up going to Dr. K for it, but he said anyone can do it--it is just a mater of hooking it up and watching. I just need someone to order it. Dr. K felt why not stay closer to home, more comfortable. I agree. I have fam. I can stay with in MA too.

I would join too, probably not face book though. My son is 15 1/2. Could we keep adult PANDAS separate?

Thanks for this post. My heart goes out for you and your family as for all the families on this forum. This is such a horrific disease. I am so grateful word is getting out as well has help for these kids. Good luck with your continued success.

Does anyone know of any Docs in Northern NE that will order IVIG for PANDAS?

PLEASE find a PANDAS doc ASAP. I listened to the "naysayers" for 6 years. Now my son is 15 1/2 and IVIG might not work for him due to his age. I've decided the "naysayers" can all go to ######! Your son sounds like classic PANDAS to me and there is help out there for him. Good luck with everything.

Thanks for mentioning that. I was thinking I would take him off it completely. He is on 20 mg right now and we were suppose to increase it to 40 this week. I thought is took 2 weeks to get into the system, but maybe it did get in there quickly and now needs to be increased. I'll try going up and see how that goes.

Thanks, this site really helps. I am so grateful my son is so strong willed. He just keeps on plugging or plowing away. These kids are truly amazing. I am so sorry to hear that. Hang in there, don't give up. You will one day be able to put it all behind you.

Whatever I thought (wishfully) was working last week, isn't working this week. My son started 20 mg Straterra about 10 days ago. After about day 4 I saw improvements, but those are now gone. He is back to doing a ton of rituals. We consulted with Dr. K yesterday and we are going ahead with IVIG. I just hope he isn't too old and has had it for too long for the IVIG to work. Dr. K feels he has a 60-80% chance given his age. Can we ever put all of this behind us?

Yes, that is what I meant, Thanks. My son is managing ok to be back in school and playing lacrosse although his rituals have increased like crazy over the last 2 days. Dr. K wrote, "there isn't any down time. He can return to school immediately." I hope and pray my son isn't too old and IVIG works.

Dr. K told me yesterday that the #'s really don't make a difference. You can have really high titers with little symptoms or really low titers with a lot of symptoms. I think once PANDAS has been diagnosed it becomes the amount and severity of symptoms to watch. I think the titers and cultures are helpful in original diagnosis.

We decided to have IVIG. Dr. K told me this AM there isn't any recovery time with IVIG and my S could return to school immediately. Could it be because he is 15 1/2?

We went to LA (from New Hampshire) to a great, great OCD specialist in late November, early December. My son was so sick and had been out of school since mid October at that point. After 12 days we came home. He was just too sick with PANDAS to fight. Anther PANDAS mom told me trying ERP at that point when he was so sick was like criticizing someones penmanship when they can't even hold a pen. He still isn't ready to do the ERP yet but is doing much better and probably will start soon. We had to give the antibiotics more time (he had been on them 7 weeks at that point). He had a T&A in mid Dec. too that helped a lot.

Nancy, My IgM was elevated but not the IgG on the mycoplasma. My PCP thinks I should not bother treating it especially since I was asymptomatic but my son was and always is asymptomatic. He never had symptoms for strep or mycoplasma, but had both. I'm wondering if I should insist on antibiotics for me too.

Vickie that is such a nice prayer. I think of Virgin Mary often. There were so many nights that when my son was so sick it just ripped my heart out. As all of you know to well the anguish of watching your child suffer and not being able to take it away. I think of Virgin Mary and what she had to endure watching her son suffer so.

He will persevere. Please believe that. Back in October, things were really, really bad for us. My son couldn't get off the couch. He is doing much better, back to school, playing the sports he loves. We will be praying for you and your family. Please remember and hold onto daily that your son will get better. God Bless.

Hi Nita, My 15 1/2 yr old son was on SSRI's for 5 1/2 years out of the 6 years he has had PANDAS. None of them worked. He is getting better off them with the treatments a lot are doing here. He tried 3 or 4 different SSRI's. He was on 200 mg of Zoloft for 2 years up until October, 2009 when this last exacerbation started. I personally feel the SSRI's do not work for most PANDAS kids.

My son started Straterra, 20 mg 5 days ago. I was ready to take him off of it day 2 because of increased tics/rituals. He was doing a ton of compulsions yesterday morning but in the afternoon, he was GREAT. For the first time in years, I watched him out on the lacrosse field, not doing any compulsions. I couldn't believe it. He did a few at half time but overall, he was like a different kid out there. Dr. T called in a second course (10 day) of Clarithromycin. He finished his first 10 day course Friday, March 26. He was on 500 mg Azith last Sun, Tues and Thurs. of last week, then started Clarithromycin again last night. We have been trying to minimize Milk due to his RAST test coming back intolerant to Cow's milk and Wheat. Something is working. I remember reading Beth Maloney writing Straterra pulled it all together for Sammy and gave him to the strength and focus to fight. I think she might be right.

I had the same experience as you, kdcd3. We are only on our 2nd script for Clarithromycin, our first script ended 8 days ago, and Dr. T renewed it yesterday for round 2. My son is the best I have seen him in years. He had elevated IgG without elevated IgM too. I'm with you, treat elevated IgG even if IgM isn't elevated.

Did your son have a T&A?[ quote name=bubbasmom' date='Apr 3 2010, 02:54 PM' post='62146] My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on. So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups. Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.