ZaxMom

Thanks for your response. No one told us to hydrate two weeks prior. That's a really good idea. He had IVIG 3years ago, and we weren't told to hydrate at all. Don't know what I'd do without this forum. Thanks again!

Thanks so much for your response. I will try the Benadryl again. We always seem to have trouble getting calls returned. Don't know if it's the Dr or the staff. He does seem to do better headache wise when I really keep at least 5 bottles of water in him a day. He still can't watch t.v. or play video games because of headache.

My ds8 was diagnosed as IgG2 deficient at age 5. Our immunologist insisted on re-vaccinating with pnemovaxx (sp?) since he had already been vaccinated with Prevnar several times and it did not seem to take. We, and our immunologist feel that the vaccine started his PANDAS since he had never had PANDAS prior to the vaccine. Onset happened about 2 weeks post vaccine. I STRONGLY urge against it. This is just one mom's opinion.

Look into Trigeminal Neuralgia and see if that fits your symptoms. A fantastic specialist is Dr. Ben Carson at Johns Hopkins Hospital in Baltimore, Maryland. He is a pediatric Neurosurgeon but does treat adults with Trigeminal Neuralgia. Good Luck!

Help! My ds8 still has a headache and lowgrade fever 11 days after IVIG treatment. He was pre-medicated with Advil, Benadryl and Solumedrol. We hydrated before and continue to do so. He weighs 63 lbs and I make him drink five 16.9 oz bottles of water each day. Am also giving him Tylenol and Advil daily. Can't get Dr. to call back. How long should this last?

My ds8 just received his second round (in almost 3 years) of IVIG with Dr. L last week, 5/26 & 5/27/13. He as had a low-grade fever since first day of infusion (99.2 - 100.6). My question is - how long should this last? He didn't have a fever 3 years ago after treatment. There are no other signs of infection. Nurse who administered infusion says this is normal. He was pre- medicated with Sol-u-medrol, Benadryl, Advil and Zofran. He also had a pretty bad reaction on day 4 after infusion. Severe headache, nausea, vomiting and fever. He still continues to have the headache and fever. He weighs 63 lbs. and I gave him five 16.9 oz bottles of water the day before, during, and 3 days after treatment. Am I missing something?

Other than making sure that my DS is well hydrated, is there anything else that I should be doing to prepare him physically for IVIG? Should I be giving him Motrin, vitamins, supplements,etc.? Any ideas?

Thanks for the Candida info. As for Florastor: my ds who is 8 has been taking two adult Florastors daily for almost three years. It was the best thing we ever did for his stomach issues. Just make sure that you don't give it to your daughter within two hours (before or after) of her abx.

Is anyone out there sorry that they chose IVIG treatment for their PANDAS child? We are scheduled for our second two day treatment with Dr. L next Tues. & Wed. We did our first IVIG 2-1/2 years ago with Dr. K. Our DS 8 who was 5 at the time, immediately went into a severe flare-up. I never truly thought that the treatment helped him. After speaking with Dr. L, we decided that some of our DS symptoms did eventually lessen in severity and some disappeared completely. Dr. L feels that another round of IVIG would definitely be beneficial. Since it has been almost three years, it would be like starting over. Our DS has never been completely PANDAS free. Sadly, we have learned to "live with it". But as all of you know, living with PANDAS is not truly living at all. We have decided to give IVIG another try. Dr. L would also like to do once monthly treatments after the two day infusion. Has anyone had any luck with this? He has been on daily antibiotics for almost three years. I was just reading a journal that I had kept at the time of his previous infusion, and I'd forgotten what a nightmare that was for my DS to go through. What are your personal experiences with IVIG? Pros & Cons. Thanks!