T_Anna

Thanks ThenMama. I listened to the whole show and it does seem like 1.5 months is the minimum post IVIG and steroids. We are at week 10 post IVIG. I just looked up their site and saw this blurb: "...some states require additional licensure to be able to test specimens from residents in their state. We are working now with the following states that require additional regulations beyond the federal CLIA and national COLA accreditation. Unfortunately, at this time we are unable to test specimens from patients residing in the following states until these states issue their approval. This list has been updated to show the remaining states as of April 18, 2013. These include: California Maryland Massachusetts Florida Rhode Island New York" Ughhh! Why is my state (NY) so backwards?? T.Anna

What about the Cunnigham test? T.Anna

How long do you have to wait to do an accurate blood test post-IVIG? Thanks as always, T.Anna

We have used Clindomycin and Refampin to fight strep too (on Augmentin now with Azith and Doxcycline) T.Anna

Thanks. I will ask them to rewrite the prescription. T.Anna

DS14 has been on azithromycin for weeks, I am getting them in z-packs (6 pills at a time). Do others get 30 days at a time? Thanks, T.Anna

Has anyone had any experience with these doctors? Dr. Hift (rehmatologist) Dr. Schulman (pediatrician) Dr. Michele Robins (psychologist) specially any information on Dr. Robins? Thanks as always, T.Anna DS14

How did your doc decide on the 4000 mg of Valtrex XR? Is there a specific protocol? My LLMD prescribed 1000 mg of the regular valtrex (1 g daily). DS had been on 1000mg way back in December and again in January for 10 days each time. This time, we thought that he may have HHV6 and Cossackie numbers and EBV numbers went up, so doctor said to try Valtrex at 4000mg. T.Anna

It sounds as though she was reinfected. Maybe you can go to urgent care and she'll test positive for strep. The one near us seems to hand out abx prescriptions like candy. Where do you live, maybe someone on the list can help get you in somewhere sooner. Sounds early enough that you can still head off a huge flare. T.Anna

4Nikki, is DD on any abx now? T.Anna

Ok, so that doesn't seem to be what we had last night. Today was a slight improvement. True test will be tonight. Wish me luck, T.Anna

USF sounds great, but after talking with Dt.Storch It is clear that my DS is not at a point where a USF program would be enough. Hopefully meds will help him get better and Tampa will be an option, but right now we are very far from that : ( T.Anna

DS is on Valtrex XR 4000 mg for Coxsackie. He has taken Biaxin and is now on Doxcycline for MycoP. My understanding is that antivirals do not work as well as antibiotics. But we are hammering away and I feel have made a teeny tiny improvement on the antivirals. T.Anna

Anyone have any experience with this place? Both Dr. Jenike and Dr.Hollander mentioned that it might be a last option for DS. Seems like a last resort, was wondering if anyone had any experience. Thanks as always, T.Anna

Thanks. Dr.T just wrote that I should continue the folinic acid. Now I have to figure out which to bring back down. Maybe Luvox as it isn't only higher but also a CR with longer release. What would "activated" look like? T.Anna

On Thursday I went to see a Dr.Hollander (NYC). He recommended a few changes to DS14's medicines. He made the following changes: Deplin (15mg) instead of folinic acid, increasing the NAC to 2400 up from 1200 and increasing the Luvox from 75mg to 100mg CR version. Today was day 1 of Deplin (15mg), day two of NAC at 2400 up from 1200 and day 2 of Luvox up from 75mg to 100mg CR version. DS mentioned he was anxious today, but seemed much more engaged and social. He ate better too. However he started crying when he finally decided to go to sleep at 4:00am and cried for about an hour (haven't seen that since January). Any thoughts? Should we give the meds a few more days and see if things get better? Is this finally what turning back the pages looks like? Btw, DS is also on Augmentin XR, Valtrex XR, Doxcycline, Azithromycin, for strep, MycoP, coxsackie, EBV. Thoughts? Advice? I can weather the storm as long as I know this is part of the process. T.Anna

I often wonder about sugar, but with DS14's BM fears, he has a very limited list if food he eats and a lot if it is sugar and gluten rich. Right now I'm just happy when he eats anything. He's always been a picky eater, but now he tries to "hold it in" : ( Yesterday he went to the bathroom for 4 hours (hadn't gone since Monday). T.Anna DS 14

We are on Day 4 of Valtrex (4000mg), what have you had success with when fighting virusese? How long has it taken to see results? I think we have the other two triggers covered. Strep, he's on Azithromycin and MycoP he takes Doxcycline (that number has t gone up like Strep and Coxsackie in January). Thanks, T.Anna DS14

You give me hope!! T.Anna DS14

Does DS have any PANS sysmptoms now? Tics/OCD/Thoughts? Have you run any tests to see where his titers were on any of the triggers. If you think that DS (and the rest of the family) can handle the risk of PANS coming back, and he is relatively symptom free, then stopping ABX may not be disastrous. It seems that several people here have tried tapering off and see results rather quickly if things aren't going well. You can try to change the probiotics and drop some of the other supplements for a while and see if that helps (while keeping the abx). Just my .02. T.Anna DS14

Thanks. T.Anna

I agree about the advice that you need to look into Lyme, Bartonella, Babesia, and other co-infections of lyme/tick borne diseases. Especially as LI from what I remember has many deer and ticks. It is also necessary to understand how much money and travel can be spent on treating PANS/Lyme. I wish traveling with DS was still easy. Definitely go as far as you can while everyone is still able. T.Anna

Can I add acidophilus and bifidus with.,, Augmentin XR Valtrex Azithromycin Doxcycline Folinic Acid Ubiquinol NAC Culturelle ?? Thanks in advance, T.Anna DS14

Dr. T would be the closest. Although someone mentioned an ID in Mt. Kisco (I know not very close either). T.Anna

It is a Jewish charity service in Monsey that helps people find professional (doctors) for certain diseases. A friend suggested I call and they recommended Dr. Schulman as a PANDAS specialist. I was impressed that no one asked me what PANDAS was or was surprised. "When I hear PANDAS, the name that comes to mind is Dr. Schulman" and I had just seen her name on the Pandas Network web site too. Figured it was worth check into. T.Anna