T_Anna

An update after two weeks with no clock, OCD is definitely winning. Sunday night DS spent an additional 10 hours in the bathroom : ( So since my other son (Non-PANDAS DS (13)) misses having a clock there, and it obviously wasn't helping DS15, I bought them a shower clock radio. Maybe the music will be calming?! T.Anna

http://www.atlantapandaspans.org/conference-schedule.html

I didn't either, but have been riveted by all the updates!! Thanks everyone for sharing. T.Anna

Just looked it up on Wikipedia. Looks promising, anyone try it? T.Anna

Great to hear!!

How about Dr.Chitra Bahkta? She is a regular on the RadioPandas and sound excellent. T.Anna

Thanks RowingMom. T.Anna

Has anyone ever combined these three? I think DS may respond better to Azithromycin, but afraid to go off Augmentin. Figured I'd poll the forum masses. T.Anna DS15

Yes, he's on both abx and anti virals. Unfortunately, we have no idea how many flares we've had previously : ( I can track regression back to when he was 2 years old and DS is 15 now. T.Anna

Thanks. LLM, it was HD IVIG #4, but we are only today 2 weeks post IVIG, so prob. haven't reached half life yet. RowingMom, thanks. I went to work before he was up (DH working from home) so I guess I'll try tomorrow am. Qannie & Ifran, thanks! Really hoping that DS will see change and have more hope too. Agnes26, DS is still on a ton of antibiotics, so hopefully we wont see regression. Thanks again, T.Anna

DS had his 4th HD IVIG two weeks ago. Last night he told me "why is this happening to me? It's getting worse!" He has been flipping out about little things and then kind of snapping out if it a few minutes later and saying "I'm sorry I flipped out, I don't know why I was so upset and I'm such an a$$". Two questions: 1. Does this sound like maybe things are finally changing? Turning back the pages, etc? 2. I was supposed to start Reservatrol (Japanese knotweed, I believe) today? Should I hold off a few days? Is there any documented info the turning the papes back? Anyone care to write an explanation? I think I explained it to DH correctly. Thanks as always, T.Anna DS15 - insomnia back a little too

If he was doing well on the antibiotics then I would ask for more. Most PANDAS patients need to be on antibiotics for months and years. T.Anna

You can also go to an Urgent Care clinic. Our local office will prescribe antibiotics for literally anything, especially towards the weekend (Friday night, Saturday morning).

We knew it was PANDAS when Ibuprofen would bring him back to human from a rage T.Anna

I would definitely call Dr.T. He knows this stuff. I think you need to do the blood tests, but most importantly is to get your daughter on antibiotics. He is very busy and that creates most if his negative feedback (and also why you can get a phone consult quickly), because he doesn't have long waiting lists. My advice, have a phone consult. Make sure that you get 30 days antibiotics or call his office early (I have the pharmacy call) to get refills (don't wait until day 10). Don't be afraid to ask for what abx you want or think works well with your daughter. You can even ask about antivirals at the same time, many kids are on both. I know that Dr.T gets a bad rep because he doesn't email back reliably, and you can only pin him done with an appointment for follow ups, etc. We have dealt with quite a few doctors at this point (10?) and we keep going back to Dr.T for his knowledge and so far (knock on wood) we have always been moving in the right direction (albeit very very very slowly). Just my .02, T.Anna

When this first started we did CBT 3x a week and he was great. But he was wrestling and off abx, plus got a flu shot and he fell off the cliff. The short answer is no, we do not do any CBT currently. DS is homebound and the few attempts we made with therapy since January have not been successful. He is polite, but won't open up and gets really anxious. The school psychologist was here a week and a half ago and the chatted quite a bit.,,but DS won't return his emails. T.Anna

Can only get a new one, because I told them it broke. I have until Sunday. T.Anna

Wishing you a speedy recovery!!

<<Methylation of course comes to mind (this post is from me after all). So does a thought about family therapy - it's a lot for a tween to sort thru. As far as physical ailments, viral would be higher on my list of suspects. Have you asked him about his symptoms and feelings? Would he be willing to keep a symptom chart with you?>> Thanks, great suggestions. We are going to a new pediatrician in two weeks who believes in PANDAS and Lyme so maybe I'll work on a symptom list. I have been wondering about dairy with him, so maybe that is worth looking into (all he's been eating lately)? Our 23andme kits for the rest of us (DS's was done a while ago) are on their way, so maybe the new integrative doctor we added for DS15 will be helpful. DS13 did shoot up a whole bunch of inches in the past few months so that probably doesn't help, and yikes, the acne! Probably should call derm about that too since he is good about washing and it doesnt seem to help : / Thanks LLM. I needed someone to hit the pause button. T.Anna

Am I dealing with another PANDAS kid? My 13 year old has been moody, had difficulty focusing & fatigue (maybe a little ADHD too). He does not exhibit OCD, rage, frequent urination, he had plantars fasciitis, am I overlooking Lyme? PANDAS? Is he depressed because my house is in upheaval and his brother is on the couch all day? He also sniffles, is this a tic or congestion (he has a lot of nosebleeds). T.Anna

My experiment failed. Without the clock he spent an additional 3 hours in the bathroom. Oh well, you live and you learn. Maybe this is the page turning back IVIG thing?? T.Anna

When DS was first diagnosed, we tried a steroid burst and it didn't do anything. What about trying a different antibiotic while you wait for testing. T.Anna

We are trying Japanese knotweed this week. T.Anna

Or any luteolin products? Just saw someone post about it helping their PANDAS child on Facebook. T.Anna

Just curious, which health insurance is that? T.Anna