nicm930

I too hope that your friend will do a story for you too..I hope this is a start for more stories to come!

Thanks everyone. There was a lot that didn't make it into the report, like about IVIG. They were here for over an hour and I know couldn't fit it all in a few minute segment. I wanted them to stress how hard it is to get antibiotics. I am still fighting to keep my dd on them. I hope it brings awareness of PANDAS to the medical community.

Hi, a week and a half ago we did the interview with the NBC 10 news reporter. She called today and said it is going to air tonight at 5 and 11 pm. There is supposed to be a link on their website after the report airs. When I find out I will let you know. I stressed to her how hard it is to find help. I hope it turned out well.

Hi Michele, My dd was homebound from Oct until Feb 2. They school would call everyday saying they can't handle her. She would sob loudly as soon as she got off the bus. Her psycharist put her on homebound while weaning her from Paxil. We kept her homebound until we found a doctor to give her abx. I had to write a note to the principal saying I wanted an eval. done on her for special ed. My dd was a honor student prior to PANDAS. They had the school psycologist test her and did a social eval. She tested poorly on her short term memory(9 percentile). I was told that meant she might struggle with facts and math, which she does. We finally got her classified as "other health impaired". She has places throughout the school to go to when she feels anxiety come on. She is right now in a smaller class part of the day with her homebound tutor who she is comfortable with. She is being brought back into her regular classes slowly. The school didn't like the PANDAS diagnosis at first. They didn't know what it was or how to handle it. I guess it would be easier if she was diagnosed with something they are used too. I stood my ground with them and brought in lots of info so they could learn what PANDAS is. With this IEP whe is doing better than I thought at school. We have some issues still (at home only). She still will not takw the bus in the am, but will come home on it( not sure why). She has maxiey about fire drills too. They are now aware of it and warning her teacher prior to any drill. My dd is worse at home too. The school could not believe when I would tell them about her rages. They saw only one from her and it was directed at me. They never saw her repeat sentences in a robotic voice either. I can't explain why they are different at home. Can you meet with the CST and go over the IEP and make changes? I am new to this to. I was given a booklet when my dd was classified and there was a phone number for the state child advocates office. I did call them and asked questions, they were helpful. Maybe you can look into what your state has to offer. They know your rights and can help you get what you need for your child. Good luck with everything. Nicole

I had Dr K e-mail me with notes from our phone consult and brought them to my pedi. He agreed with it and said the dose was fine, especially that it was for a short time. We also saw Dr Trifeletti on Wednesday and agreed with Dr K's protocol. He did prescribe Zithromax for her too. It just worries me that she is having trouble sleeping now. I am going to e-mail Dr K and see what he has to say.

My dd started a steriod burst with the recommended dose from Dr K. She is on her 4 th day and were are not seeing dramatic results. Anyone that has done the steriod burst, how long was it until you saw results. She is having trouble sleeping, which is pretty new. The rages are better. OCD a little better. Maybe I am expecting too much but I thought we would see he back to normal.

Lacy, I feel exactly the same way. Some days I am so positive that I finally am getting where we need to be the the door closes on me again. It's exausting. We all understand, unfortunately. nicole

Amy, I am so sorry that your dd is having a hard time. My dd (almost 10yrs old) is homebound right now. She did't have rages at school she would just loudly sob and moan. After 1 hour of her being in school they would call me to come get her. Kids were starting to make fun of her (4th grade). So I went with it so she didn't get down on herself anymore than this PANDAS is doing to her self esteem. She gets 1 hour a day with a tutor, she is a special ed teacher and is absoutley wonderful. If they classify her as "other health impaired" she will get 2 hours a day. I am still trying to get her on anti-biotic. I have a phone consult with Dr K Monday am and my pediatrician ageed to listen to him, so I am hopeful. My dd was on Rispadral too. I weaned her from it. It did nothing for her. She is still on psych meds..for now. I want her off this stuff. I wish you luck with the IVIG. I hope your get your happy little girl back. It's so hard to see this "monster" as my dd calls it take our children from us. I hope all our children get better soon! Nicole

Erica, Who is the dr in NJ? Did you try to get in with Dr Triffiletti? We have an app't with him in December. I live in NJ and was just wondering who you saw. Nicole

I didn't know that there was a PANDAS panel test. Is it testing their titers? What exactly are they testing for? I am interested to find out. From what all the docs I have seen they said there is no blood test for PANDAS it is a clinical diagnosis. I am so confused about this whole thing. Thnaks.

Today we went to the immunologist at Children's Hospital. He didn't really do to much for us. He knew what PANDAS was, but said he was no expert. He did know more than most of the docs that we have seen so far. He looked at her last titer test done back in Feb. It was 149. He said that it was in the normal range but high. He said if we watied a few weeks later they would be much higher. He ran blood work on her, titers, anti-dianase, and one I thought was strange, tetnus. He did ask what recent immunizations she had. I told him I have an app't with Dr Triffiletti in Dec 10th( the day befor my dd's 10th birthday)) and he said that that is the way to go, especially that her had written published papers. He gave me names of 2 neurologist at CHOP that know PANDAS but said I will probably wait awhile for an app't. He basically did the blood work for the neuro so when we go in December he sees her levels now. I feel more confident that we are on the right path to getting her treatment. So far she's been pretty good. Not too many rages, still with the OCD, and she has been making a tounge clicking noise. She also said today that her eyes keep blinking. I have never seen it, so I am not so sure about that.I have learned so much from this board. I thank everyone for their support! Nicole

Lacy, I am sorry that your daughter is going through this again. My daughter's eyes get that same look when she is in a rage. It looks like her eyes are black. It is scary. I hope you get some answers from the ID Doc. This PANDAS thing just really stinks. I feel for all these kids.

My DD also complains of headaches and stomachaches too. She will not take anything unless it is really bad. The dr thinks she has inherited migranes from me.

Thanks for everybody's quick responses. We live in New Jersey. I was reading about Dr triffilitti the other day. I am going to see if he is seeing any new patients. I know that there was a dr in Children's Hosp in Philly that treated a kid with PANDAS but has left the hospital to start her own practice. This was only last week that she left and the hosp. hasn't got back to me about where she is . I hope when we go out to Philly in 2 weeks that they can be more help. Amy S I did write to Dr K and he said he'd be happy to speak to me about my DD. I talked to my old ped. and she said that she wanted to first check him out. She said she agreed witht he steriod burst but not the anti-biotic. It is so frustrating. I called a advocate for special ed on Friday and her niece has PANDAS. She was lucky enough to get into the NIMH last year. She is on amoxicillin and luvox and is doing fine. She said my DD needs to be on anti-biotic. I said Yeah I know! She tried to help me find a dr and told me to check out an MD that specalized in OCD. At this point I will try anything!