nicklemama

Well, why would you give him that courtesy, considering this is exactly how he went about "diagnosing" the girls! LOL Dr T says Dr CD has never even seen or spoken to the 8 girls he's evaluated. Interesting. Dr CD has a huge ego. Wow. His attitude and others just like it are why we have so much trouble getting our kids properly diagnosed. I'd love to tell him off but I know it would do absolutely no good.

Beth Maloney sent out a press release for Dr Trifiletti and is asking everyone to forward it on to their local media, which I did. If we all put this out there, we'd have mass coverage of PANDAS/PANS and those who are comfortable could share their story to their local press.

On Augmentin 1x day 250mg as prophylactic. Have no plans to drop it. When he flares, we return to treatment dose. He has been exposed to strep so many times over the last 3 months, I've lost count. I cannot take a chance, at this point.

Give up trying to convince the doctor you are currently seeing. Seek help from a doctor that has a good understanding of PANDAS. Unfortunately for most of us, that means traveling. Dr Kovacevic is closest to you, in Chicago. You could also do a phone consult with Dr Trifiletti.

This is an excellent article and in Scientific American so more 'average Joe's' will read it.

I hope he/she sticks with it. Gotta love the fact that Dr Mechtler doesn't like his financial relationship w/ a pharma exposed, lol.

I reported to VAERS after my DS (age 5 at the time) had a sudden explosion of symptoms (now known to be PANDAS) two days after a FluMist vax.

Advil and Motrin are the same. Its hard when you have a child who reacts to illnesses. My DS is a reactor. He seems to react only to strep, though.

Its sounds like all three of your children have PANDAS. I am afraid to say that the best way for you to get to the bottom of it is to consult with a doctor who is an expert in PANDAS. If your pediatrician is willing to work with one of the doctors, I'd recommend having a phone consult with Dr Trifiletti. He will order the bloodwork and make recommendations and you can work with your local pediatrician. There is also a list of doctors who are familiar with PANDAS in the pinned section at the top of this board. They are listed by state. If you find one listed in your area, you can then inquire about them and their knowledge. I wouldn't wait the 6 months for Texas Childrens. Most of us here have to travel great distances to see the experts. Unfortunately, there just aren't that many doctors qualified to treat PANDAS out there. www.pandasfoundation.org probably has the most up to date doctor listing by state. Be aware that just because a doctor is listed there does not guarantee they are an expert.

Erin Brockovich had a very good explanation for why these girls are just now having problems 40yrs later. First, she said environmental exposure takes decades of exposure before you see the results.... cancers, autoimmune disease, etc.... She has been getting loads of email, over 1000 messages, telling her of individuals living in the area and their health issues. Enviromental exposure may have triggered these girls obvious neurological issues. Last night, two moms said these girls do not all know each other. They range in age from 13-18 and have nothing in common but the school. Some of the girls know each other. Some know of each other. Some do not know each other at all. Mr DuPont arranged a meeting of all the parents. He said 2/3rd attended. The purpose was to find a common thread. Only the school was their common thread. Maybe they all have PANDAS but I'm still skeptical. Certainly, its not being reported all their symptoms. If we were told they were experiencing more PANDAS symptoms, I'd be more likely to think they all had PANDAS. As Dr T said, there has never been a cluster of PANDAS like this. It might be possible but I'll wait on Dr T's evaluation results.

Finally, Mr DuPont was given enough time to actually speak. He did very well.

I do not think all these girls have PANDAS. I haven't heard anyone mention OCD. I am having doubts about this number of kids presenting w/ very similar symptoms. Just doesn't seem quite right. I think they are onto something with the toxic spill. Mr DuPont believes some kids may have PANDAS, some toxic exposure. It will be interesting to see how it all turns out. As for the Dent doctors, I can't believe how often conversion disorder is diagnosed. How many kids do you think have PANDAS that have been seen by them and told it was conversion disorder. What a shame.

She's reacting to brother's illness. Give motrin every 5-6 hrs during wake hours, for a couple of days.

I saw Dr Drew last night. I am very suspicious that neurotoxins may be involved in some of the kids. Wow, Erin Brokovich and her collegue uncovered a huge spill site never cleaned up and she's been getting emails from people in the area about their ailments. The EPA is now doing a huge mea culpa. They were quoted as saying "we dropped the ball" on this one. One of the parents contacted Ms Brokovich in Dec and then again in Jan, when someone anonymously slipped a report about the toxic spill under her door. So interesting. The stonewalling school is not making itself look good.

If your daughter has been sick w/ PANDAS for a long time, its going to take a while, unfortunately, to see major improvement. Look for the little things and keep after it. I would not expect any major improvement before 30 days of abx. If you get it before then, great. Don't lose hope. As for the MRI, great for ruling out other things. I do not believe it will show inflammation of the basal ganglia. Only one test supposedly shows that.... a PET scan w/ a very special tracer. Its only done at Detroit Children's Hospital by Dr Harry Chugani. I would caution you that it is highly experimental and there have been PANDAS kids who's PET scans were negative.

Having flares during this time of year would be common, I think, based on the fact that this is the height of strep and flu season. I haven't noticed a pattern w/ DS, mostly due to the fact that I didn't know he had PANDAS until 2010. He had flares last Feb/Mar. He's had flares already this yr in Dec and now Jan, due to being exposed to strep. He did incredibly well this past fall. We'll see what spring and summer bring, now that he's post IVIG.

DS has been on daily abx for 14 months. He has been on a prophylactic dose since June, after IVIG. He has taken biaxin, augmentin and azith. Don't remember the biaxin dosage but his augmentin dosage was 500mg bid and his azith dosage was 250mg sid. Currently, his prophylactic dose of augmentin ins 250mg sid. He is currently age 8 and weighs 60lbs. He has had two severe exacerbations (before starting abx and having IVIG) He is 8 months post IVIG and doing well, maybe at 90%. He's had 3 colds since Nov and several strep exposures which required us to give him treatment dose augmentin (500mg bid). He seems to recover each time but it takes a while.

I know you are asking about Lyrica and Namenda. Let me throw something else out there for you. If those don't work, have you tried Lamictal? It worked for my son. It didn't totally erase the anger but it put a damper on the all out rage attacks, from several a week to a few a month to none. I see you've tried trileptal and I think it might be similar but if all else fails, its worth a try. It does take a while to ramp up the dose to prevent an allergic reaction.

Just watched it. They are sticking to the conversion disorder theory.

I am thinking a vaccine is involved too. Why else all the hush, hush from the health dept officials? They don't want the public to know which vaccine because they want parents to keep vaccinating their children. A vaccine, FluMist, set off my DS's first major exacerbation at age 5y9m. In hindsight, we now know he was displaying much milder symptoms, off and on, for 7 months prior to the FluMist. The symptoms of irritibility and being difficult, which were unlike him, were thought to be a phase. It was so mild it did not set off any alarm bells in us. We had no idea he was sick. It started after a double ear infection. Teens, by nature, are irritible and difficult, so how would you even know?

There may be an appeals process for this that your doctor can state its medically necessary. We had this problem w/ our HMO. Never got to the appeals process. I kept getting the 6 pills at a time. We switched insurance at the first opportunity and have had no further problems w/ it. We now have a standard BCBS policy.

I agree with this 100%. My DS is a perfect example. He never missed a beat in school. Oh, he had OCD and lack of attention and fidgeting, trouble transitioning (due to OCD), regression in social skills in school but his academic work never faltered. I have always thought it was because he was already far ahead of his grade level and could do the work easily. He was and still is a top student in his grade (2nd). He does math in his head. There were many times I wondered how he was able to cope and continue to do well academically at school. He was in such a terrible state w/ his PANDAS.

Yes, and in waves. He's an only. He competes with no one.

I agree w/ EAMom, most of the kids who are properly diagnosed are kids w/ well educated parents and I'll add that are very persistent. I dug out my DS's neuropsych evaluation and looked up what his scores were on the Rey-Osterreith test because I remembered that test name. What a surprise. It says "Unable to score due to significant visual disorganization." He was evaluated nearly a yr after onset and at the time was undiagnosed and untreated because we didn't know what we were dealing with. My DS also scores in the gifted range.

I just discovered you have to go to page 4 of the above link and scroll about halfway down to find the doctors by state link. I don't know why this is not pinned separately so folks won't have to do so much digging for it. Anway, it lists two dr's in your area but I'm not sure this is an up to date list.