saidie10

Good luck! I am sure it will be worth the trip!

DS7 had the following that were the only two not within normal range or pretty high normal. Anti-Tubulin was 2000 where normal range is 250-1000 Anti Dopamine 2 was 16000 where normal range is 2000 to 16000 so still within normal but very high Found this online about Tubulin when I was trying to figure out exactly what it is; Tubulin Is a Neuronal Target of Autoantibodies in Sydenham’s Chorea1 http://www.jimmunol.org/cgi/content/abstract/178/11/7412 - article with above title Christine A. Kirvan*, Carol J. Cox, Susan E. Swedo and Madeleine W. Cunningham2, * Department of Biological Sciences, California State University, Sacramento, CA 95819; Department of Microbiology and Immunology, University of Oklahoma, Oklahoma, City, OK 73104; and Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, MD 20892 Any thoughts on what this means? I have read the two papers (well tried to atleast) and I am really, really confused. Kathy said all my boys results will be ready tomorrow including Cam Kinase. Thanks in advance for any opinions. Cindy

strange about chlorine and tics....DS has been swimming a bunch over the last few days and his tics were definitely happening tonight! as for the motrin, if the morning starts out bad, I don't waste any time. i get a dose of motrin in him as quick as possible before it gets out of hand. i feel for you though with the behaviors. it sounds like you are talking about my DS the last few days. EVERYTHING sends him into an emotional meltdown. ready for treatment and praying it will work.

Good luck and many many prayers your way!

I am expecting that my sons results will be in tomorrow. I am very very nervous. This is going to be the longest two days of my life. Anyone else expecting results from Kathy tomorrow or Wednesday?

so sorry you have to make this decision! i was put into a similar one a in early May and wanted to bring my kids so bad for a week to see their cousins and play all day at their grandparents but my youngest nephew tested positive for strep one day after getting to my parents. we opted to not go. it was not worth it to risk another exacerbation in my oldest son and we were confident that my youngest had just had his initial onset during a bout of strep he had just gotten over in April. you guys are in a more fragile situation i would think being so class to IVIG. as hard as it would be to not live in a bubble so to say, you may want to protect him a little longer....

Robin, 151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it. Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point. Good luck, Alex Now I understand the steroid burst! I would agree with Alex, Robin. You are putting the pieces of the puzzle together which is all you can do since there is no definitive test per say. Take what you have and forge ahead! Good luck!

Just making sure I understand what you mean by "decisive moment for us"? Is that because it was obvious that the steriod burst worked to help with the PANDAS symptoms thus indicating for sure that it was indeed PANDAS and that IVIG would help with recovery? Just trying to understand all of this!?!?!? Brandy - so glad your appt went well. Keep my updated on the appt with the pediatrician! If I hear from the immunologist in San Antonio I will let you know!

Any thoughts or experience with weaning off SSRI? My son has been on a low dose of Zoloft (25mg) for 1 year. In April before we confirmed PANDAS, we tried to take DS7 off and the symptoms came back very quickly so we resumed the 25mg. After our appt. with Dr. R in Dallas and the confirmation of immune deficiency and PANDAS, we all talked about trying to wean off Zoloft again. We lowered his does to 12.5mg about a week and a half ago. OCB's are quickly creeping back in. DH thinks we should just keep him on the 25mg until he is fully treated. What do you guys think? When would you, or did you take your child off an SSRI if they were on one once you found out it was PANDAS and that you were just putting a bandaid on the problem instead of fixing the root cause. Now that we know and are hopefully successful at some point in fixing the root of the problem, when do you take them off the SSRI?

What a ride it has been for your boys and for your family! How thankful you must be to see the improvements you are seeing. Keep up the good fight and continue to keep us all posted!

Great job! Good for you...you should be proud of yourself! We look forward to hearing a full report!!

Yeah Brandy! I can not WAIT to hear about the consult as we are probably going to be scheduling one very soon...

Does anyone know if anyone is trying to put one together for the Austin/San Antonio area? I would love to help in any way.

Yes yes yes! Thank you so much! That was the one that was missing in action LOL! She got it so thank you so much!

What a wonderful story of perseverance by a dedicated Mom and two girls whom I am sure are the lights of your life! Thanks for sharing this is a great inspiration to us all!!!

Hey I know someone like that too My son has always been the life of the party (or the playroom, classroom, etc) so to say. Very outgoing, sociable, always a little silly (typical class clown kind of stuff) but now...the last year and half...WOW, he is like the goofiest little thing ever! Definitely has no shame, definitely uses smutty language, unintelligible chatter, etc....so many things on this list!!! I definitely attribute it to PANDAS as this is NOT the same child I knew 2 years ago.

This is wonderful news! What a great feeling for you and obviously this Doctor is overjoyed that he is helping people! If only more doctors would open their eyes and they too could experience how wonderful it would be to be able to help children suffering with this.

So glad you found someone to help! It must be such a relief at this definite time of need right now. You guys will get through this!!

I have sent a few PM's and they are not showing up in my sent folder? I don't think they are going through. Any advice?

Great news Brandy!!!! I hope he continues to improve. Sending positive thoughts your way. Our boys sound so much alike. I have never been able to use the word subdued with my son either! Can't wait to hear about your consult with Dr. K. We are thinking that might be next now that we know IVIG is in the very near future!

I know my son was hallucinating and it was not just an active imagination because looking back these things were happening during my sons worst periods last year (4 strep infections in a 6 month period). He would tell me he couldn't fall asleep at night because of the little light bugs in his room. Then randomly he would ask me if I saw them at various times of the day. I mean he would literally say "see them Mommy?" and reach up and pretend he had grabbed one and was holding one. He was convinced they were there. Since he had his tonsils out and actually has not caught strep that we know of (he does of course react to it when he is around it) he has not had these hallucinations.

I sent you a PM!

this is great news!!!! keep spreading the word. this is so wonderful for our kids and so many, many others!

I know you must be relieved and sad all at the same time. We are all in this together. We are here for you!!!

you need to contact him and try to get something set up!!! don't miss the opportunity!!!