Rachel

Rowingmom,
 
I'm guessing that you use this combintion because of the different strains and I had not thought about this before. I have read somewhere that there are a few stains that a PANS/PANDAS child needs to stay away from. Is this true? I only use one brand so I can avoid those strains.

Thanks for digging the old post up.

Just a thought, but have their iron levels been checked? I'm just wondering if antibiotics will miss with these levels. When my son was anemic 2 years ago, I could not hardly get him to eat. It was bad but once the iron levels were there, it was much easier.

My son takes the extended release clonidine at night. He was waking up at least once an hour. We tried the regular clonidine but he was unable to sleep through the night. He takes .3 of the extended release, which is a big dosage but at one time he was able to take .2. I am hoping to take him back down but ever since he had a double ear infection last October, I have not been able to take him back down on the lower dosage. I have currently got back some testing on my son that indicates he has high norepinephrine levels. Clonidine will also help to lower these levels.
 
My son also has vocal tics and takes Intuniv during the day time. He was switched to this medication when the clonsapam stopped working for him. Intuniv also helps regulate serotinon and dopamine levels in the brain. My son has had problems with this also.

Joybop,
 
The website is k12.com. I had to use that site to enroll my kid. You will need internet service because this is not included. Our school also provided a computer because my son was on an IEP. School does not cost us anything in Oklahoma. Any books for classes or supplies needed for Art class was sent to us. As the learning coach you log in your child's attendance daily and you have access to all your child's lessons. Your child attends classes online and is provided instruction by certified teachers. In Oklahoma, the kids must log in 30 hours of attendance anytime Monday - Sunday. So it allows a very flexible schedule if your child is having to do treatments in a hospital setting. As long as you have internet, your schooling is just a click away. In Oklahoma, there are several K-12 virtual schools. The school we were enrolled in was the one closest to our home district. We did have to get an emergency transfer but that was no problem. The school district understood and knew we had no choice due to my son's medical condition. Our school has outing for the kids monthly and they have many different contest. They even have online clubs the kids can join. Hopefully your state will offer something close to what we have. Wishing you the best.

Does your state have K-12 virtual school available? In Oklahoma it's a free online public school. This is my son's second year. He's in 7th grade and it's been wonderful. He is on an IEP. The staff has been wonderful to work with and they have accomodiated his educational needs. All the curriculm is provided and a parent needs to sign up as the learning coach.
 
So glad your vist went well with NIH. Sounds like you learn quit a bit. Wish they would do a study on IVIG with the first treatment after a six month on set. I would really be interested in knowing those results.

So sorry about your appointment. I would encourage you to find a doctor that specializes in PANS/PANDAS. I found a doctor in Texas but thats a really long drive for you. I am new to this forum but there is a post about doctors that specialize in PANS/PANDAS.
Rachel