Telya

Take a deep breath, now take another. Ignorant people aren't worth the energy you expend on them. Go over her head, strait to the top with a brief note and a copy of her email. No doubt any administrator worth his/her salt will put her in her place. It doesn't hurt to mention that if the accomodations cant be made you may need to look at legal action.... that always gets their attention. Mean people suck. Hope your day ends with a laugh.

Could be. He did have blood work 3 weeks before the burst started and all was good and didn't have any of his usual pandas episode like symptoms. I assumed that the steroids would bring out some of these symptoms. We are trying to confirm ds12 pandas b4 we attempt ivig. Is this right, should I get him tested for strep?

It's always a tough call. School or not to school. Last year our ds who has been struggling with his pandas episodes was offered a theraputic class room since he had slot of school refusal in the previous years. We thought it would be great, small class lots of accomadations etc. It was great at first... But now he's isolated, won't see friends or make any new ones. And he's been doing better academically and we are now trying to gethim into mainstream classes again without success. If you decide to keep your child home, or home school I would advise you keep as much of their regular activites as possible. We unwittingly made a cacoon for our son and nowhere won't come out. I wish we had just kept at it, I think we would have been further along. Would of could of. Best wishes and be strong.

Is ther an existing support group in the area??? If not I'd like to start one. Pm if your interested.

Wornoutmomma- sorry for the late reply, no explanation or indication that it was a concern about the asymetry, just noted it in the report. Dr. K read the report too and didn't say anything about it either. I think it's ok because the volume was still in the normal range.

We just started a steroid burst on Friday. Friday night and sat night my ds 12 wet the bed both nights. He hasn't done this since last year after a pandas episode. He's been more verbal and a little more cooperative other than that not much else after 72 hours. Any one have a time line on this burst or is it different for everyone.

The PET scan results are in. NORMAL! I so badly wanted to hear that the inflamation was there. The only comment was that his Thalamus was asymetrical and the right side had a higher volume. Next step is a steroid burst with Dr. K. More and more I am begining to think my son's sever anxiety is just the crap left over after 3 1/2 years of dealing with PANDAS episodes.

Nicklemamma- our son was not in exacerbation. We have not had a a cunningham test. we just started treating his PANDAS from a medical point of view. We've spent the last three years in psyc. Offices and 3 hospitalizations. Our son use to have periods of health between each episode, however he never came completely back to us after the episode in march of 2010. Now we have a new normal. He's a complete shut in. Has no friends and has been placed in a theraputic class room at school where he spends the whole day including lunch with his teacher. At least he's going to school now. At his lowest points he would grab a knife to protect himself so we wouldn't take him to school. We just want him to have the life he had before. I wonder sometimes if PANDAS is gone and this is just all the crap left behind. I was really hoping for a clear answer about inflamation so we could pull the trigger on the ivig. Bla bla bla.......

We were referred to dr Chugani after our inital visit with dr. K. Dr Chugani call this morning with the results. Our son had a normal scan with a note that there was asymetry in volume of the thalamus. We were hoping for some clear evidence, now were just waiting to hear back from Dr k for the next step. I'll keep posting as I find out more.

We just had the pet scan with dr Chugani in Detroit last week. In addition to the scan they did some psyc and neuro testing. We are waiting with baited breath for the results. It will be a major consideration for us in choosing ivig for our son. By the way he was sedated for the test which takes 90 minutes. We were on our way back to Chicago 30 min after the test was over. He had no adverse reactions.

This is a Ray of hope for us. We are waiting for news from our ds 12 pk pet scan and a follow up appt with dr. K and then we will be on the path to ivig. It's scary to think you may not have the outcome your hoping for. I'm so happy to hear that it's working out for your son. I totally get the eyes thing... We've been dealing with this for 3 1/2 years now, and even on good days his eyes have that deer in the head light look. And his expressions are so flat, that's what I miss the most. Giggles and excitement, dissapointment and quizical. He has two modes, flat or combative. Good luck i hope you have continued healing.

We have our first appt Monday with dr. K. What should we expect. Heresppnded to my email within 12 hrs. And we got into his office in less than a week. I'm very opptimistic.

Planting the seed is all you need. My ds school psychologist said in our very first meeting when my son had his onset. " I wonder if this is pandas" everyone was like "what's that" 3 years later and I now know he has it. Even though no dr. Or psych. Ever mentioned it, or worse they dismissed it when I asked about it. If she had never planted that seed long ago I wouldn't have kept looking. Keep planting.

At the early onset of our ds pandas, when our ds refused to go to school and had sever anxiety my former best friend said, "maybe he wouldn't have so much anxiety if you had made him attend birthday parties and participate in sports" "maybe if you had been more of a parent instead of his friend he would dowhat he's told" did I mention FORMER friend. she just shook her head like I was trying to find an excuse for my ds lack of social skills. Must be nice to have a perfect life and exceptional children, clearly she's cornered the market on child rearing!!

Thanks for the link, I'm making an appt to talk with jacks ped. He's been supportive and is open. I think if I provide him the info he will do what I ask. Jack has gotten better at sharing with us and no longer thinks were the enemy. But yourrightthat anxiety is a brainwashed and kidnapper. I'm trying to find kids in our area that he might be able to connect with.

Thanks for the link, I'm making an appt to talk with jacks ped. He's been supportive and is open. I think if I provide him the info he will do what I ask. Jack has gotten better at sharing with us and no longer thinks were the enemy. But yourrightthat anxiety is a brainwashed and kidnapper. I'm trying to find kids in our area that he might be able to connect with.

Hi Teyla, I am so sorry for you, you have been suffering for a long time. What antibiotics is he on and how often? Also, what PANDAS doctor do you see? And have you done the Igenex testing for lyme, which for so many, turns out to be underlying PANDAS, which can't clear until the lyme puzzle is solved. Please stay on the forum. There are so many who will help you here, you are definitely not alone. Jack is taking 875 mg of amoxcillian 2x a day for 14 day, we just finished that and then 500 mg 1 x a day for 30 days. We dont have PANDAS doc. Just his ped. What is Igenex? Can my ped do it?

Jack is on 875 mg of amoxicillin 2 x a day for 14 days then 500 mg 1x a day for 30 days. He just finished the 2x 875 for 14 days. Yes a few bright moments here and there... its hard to always say, he doesnt share his feelings and doesn't like to have conversations. He's been at this so long that now he is very guarded with what he says because it may lead to something he doesn't want to do. He's very quiet. Right now I'm grateful that he gets up and goes to school everyday. When this first started, and he refused school, his anxiety would be so high that when we tell him we were going to make him go, he would run to the kitchen and grab a knife to protect himself. (We never threatened him, and we were as calm and loving as we could be) Ill try to send you a PM if I can figure it out. I have no experience with blogs.... social networking sites. If you dont hear from me will you please send me a PM?

Hello, my 12 year old had is first PANDAS episode in October of 2007. It took almost 6 months to figure out that it was PANDAS. We've gone through a number of doctors and thearpists. He's been in the psych. hospital 2 times for a week each time, in two outpatient programs 3 weeks each time. We've tried zoloft, ativan, lexapro, without much success or worse a sever reaction casusing the hospitalizations. Now he's on prozac 25 mg, focolan 5 mg xr and .05 mg of clonodine. This mix has got him back in school and doing well academically, however his anxiety is over the top. He was moved to a theraputic class after his last hospitalization and school refusal. He was slowly loosing his friends but that put him over the edge. He hasn't had a friend since March of 2010. He spends his days alone in the basement playing video games or watching TV. He's been to CBT thearpy but wont buy into it. Today is his birthday,my 12 year old son is in his room refusing to eat or talk about what is upsetting him. I finally convinced his pediatrician to put him on maintence antibiotics. From the time this all started to today the "good" times are getting fewer and further apart. I'm tired, he's tired, my family is tired. To make matters worse, we lost our health insurance last year and I would like to pursue IVIG but the state health insurance is not likely to cover it. The psychiatrist we see at University of Illinois Childrens Clinic for stress and anxiety is very good, but she doesn't really address the "PANDAS" she's focusing on the symptoms, social anxiety, inattentiveness etc. Jack had a happy life before this, he had a long list of friends and was outgoing and always busy. He had a great sense of humor and got along great with everyone. He was everyones friend. Now he's no ones friend. In addition to his anxiety, he has sensory issues, his diet is crap, he doesn't seem to enjoy anything other than video games and the family cat. Im rambling I know, but his story is long and complicated like most of the people on this site. Any feedback is appreciated. Thanks for reading.