bronxmom2

So we could really expect a "saw tooth" recovery with Azith too?

I also noticed that my son got better for about 5 days on azith, then suddenly worse (and also very tired) for several days, then better again. I panicked (here, publicly... if you scroll down you'll see my post, "better, then worse, zith wearing off?"), then decided that on day 5 he'd been exposed to something on a playdate. It took a few days to get back to the initial improvement. I'm also trying not to learn not to freak out over a bad day, but to look at the big picture. Good luck, hang in there... Was it you who recently had an appt with Dr. Latimer where she said she wanted to rule out lupus or other autoimmune problems too?

Hi, we're in a pretty similar position... we made one appointment with Dr. Latimer, canceled it amid uncertainty over whether it would help or be worth the $$...then made another when we realized this thing was just going to keep coming back and the antibiotics are just a temporary and imperfect fix whose efficacy slowly erodes over time. As you've already realized, it seems that pneumoccocal titers are useful primarily to get insurance to cover IVIG. (Also to help understand underlying problems with our kids' immune systems.) How crazy that we find ourselves "hoping" for evidence of immune deficiency in our children! I've been kicking myself over not getting those titers before seeing Dr. Latimer as I know she will TRY to get IVIG/PEX covered (the nice lady in her office says it's getting easier)... so I'm hoping she will have some trick up her sleeve for us even though your pneumo titers are "normal" and I don't have them. I have five sets of ASO titers from the past year, which have fluctuated between 400-600, plus the Cunningham blood test results (do you have those?), plus one frantic mother. You are one step ahead of me-- at least you have a neurologist willing to try prednisone, I have not been able to find anyone locally willing to do this-- but I have not heard of anyone regretting an appointment with Dr. Latimer. Good luck.

EAMom, how long did the steroid improvement last?

I am probably going to home school too. I don't know how else to protect him. I too am seeing Dr Latimer next week and anticipating either steroids (compromising his immune system even more) or an expensive next step like PEX. Also his behavior in school is a real problem. Day two at a new school and his teacher is already calling... Is home schooling something you would consider?

I would say he's somewhere between getting dragged to the table and getting lost in his legos. Closer to getting dragged to the table, though. I played with my legos until I was 18!

hey guys-- I hang out on this forum too much too! I always thought the obsessive interest thing was "normal" too, actually I was a little proud of it, my son was always different from other kids and this was one of the cool ways... he's passionate! Now I'm beginning to see everything in a different light... it's obviously a "symptom" of OCD and it does impede his social functioning, but on some level I don't care... as long as, as dcmom said, boundaries are enforced... though the boundaries take a lot of energy to enforce... once you give him a little he'll always push for more. I guess I wonder if OCD gets "worse" if you give in to your obsessions.

Good luck with the IVIG!!!!!

My son is obsessed-- or, um, passionately interested-- in one thing after another. Last year it was ships, he learned everything he could about ships and everything he touched turned into a ship-- legos, sticks, if you gave him a stack of paper and asked him to write something you'd come back to find an enormous mound of finely constructed paper ships. At the end of each day his backpack was stuffed full of paper ships. Now, this seemed like an harmless or even constructive interest, so I got him books and kits and we watched ship movies and I took him to ship museums, etc. Now he is obsessed with something called Games Workshop, which is this strange line of fantasy games, you paint these intricate little figurines and play elaborate, chess-like battle games with them. There are Workshops in most cities where you can paint your figures, play the game, hang out with other gamers. My son just turned 7, the others are all teenagers or even adults. I like these people, they are nice to my son and he is able to interact without the constant conflict he generates with his agemates. He will sit for hours painting these things-- this child who otherwise bounces all the time-- and at home he sits pouring over the Rule Book. It's very useful for managing him, but of course he is obsessed. He literally can't talk about anything but Games Workshop and/or Lord of the Rings figures. I know I need to get him off this stuff, but... sigh. Is it OK to use these obsessions to manage our children, or do we need to fight them?

oops my baby post while I was typing. I was going to say it seems like you could catch it early.

I would skip the local specialist and go straight to one of the two people who are really treating this thing-- Dr. Latimer in Bethesda and Dr. K. in Chicago. It see

mom md, you are an inspiration! I was wondering about you guys today, wondering if your son was still doing well. It's so good to hear positive news from someone! We are seeing Dr. Latimer next week, I think my son is not quite as extreme as yours was, but I have the numbers to back me up (Cunningham's tests, etc), and I am really devastated, so I am hoping she will be able to help us. Your story makes me feel we should go straight for PEX, though it sounds traumatic. Thanks for continuing to post... and for advocating for us from the inside. Something tells me we could all benefit from having a little tiny mom md with us in our pockets when we go to drs appointments.

My PANDAS son is not his child. That makes it harder.

He's not in school yet (they are supposed to start tomorrow), so I am confused about where he could have been exposed... unless one of us is a carrier, or the neighbor kids that he plays with every day... though in that case, would he have initially gotten better? That's what seems strange. Now that I think of it, he did have a long play date with some kids the day before he unraveled. That was the day when his behavior was the best! We toasted him at dinner and he was so proud. Then the next day, the emotional lability and arm swinging started creeping back in. But, if he's that sensitive, how can I send him to school? I guess I'll try to see it as a flareup from strep or some other exposure, keep giving him the zith and hope he comes back. I'll give advil every six hours. He's 60 pounds so I'll give him 300 mg. I don't know what I'd do without this board! Three days ago I felt cautiously optimistic about school (after a year of wanting to homeschool) but I seriously do NOT want to send this kid to school.

I am trying not to give up hope but... as I said, he got better for 4-5 days, then rapid unraveling. Choreic movements. Three emotional outbursts, total meltdowns before 8am Keeps tackling the baby. He once again can't interact with other kids... when he was improving, I offered to watch the neighbor's kids today... but my son can't even be in the same room with them, even though he's begging to be with them... I have to isolate him in his room. These other three kids are so... normal. It's so weird to have kids in the house and not worry about their every move. Also, my husband is no longer a believer... no longer believes anything will help, thinks I'm making one excuse after another... we have started fighting. I'm really heartbroken and sick right now.

Doctors continue to be taught in medical school that strep is impossible before age 3. It's an outrage!

he is taking probiotics but all I can get him to take are the chewable kind.. won't do the liquid/powder/kefir which I suspect might be better... won't even eat yogurt.

Thanks, you got the prednisone from Dr. L, right? She thinks that might be all you need for now? I'm trying to decide whether to try the prednisone or push for IVIG/PEX from the start. Since raging is one of my son's issues.. the prednisone scares me a little.

Treatment dose, 300 mg/day Yes, I'm giving him an adult advil tablet (200 mg) every morning. Sometimes (when I see the crazed look in his eyes) I give him 2. Too much? Thanks!

Karen, are you still seeing positive effects from the prednisone?

I know this is something we are all eerily familiar with, but... My son was in an exacerbation; a week ago he started zithromaz (our first time trying zithromax); he improved steadily for 4 days. Days 4-5 he was great. Now the last a few days he seems to be... getting worse again. Why would that happen. We are seeing Dr. L. on Sept. 18.

Thanks, I never knew other parents noticed this. I noticed my son always seemed hungry during an exacerbation. I guess it's a similar mechanism to what makes people eat a lot when highly stressed.

I have also been wondering why she is not on antibiotics. I'm glad she is feeling a little better. I know what it's like to live so precariously with your child. Good luck!

Oh, and one other things, I thought it was interesting that your kids' numbers seem to trend downward by age... maybe suggesting that whatever you've done to protect your kids as this thing has unfolded in your lives ...has worked to protect your younger kids? Do you feel these numbers reflect what you see in real life, in any meaningful way?

Did you get the study? Kathy forwarded a very interested study along with our number. The range of Cam Kinase #s for PANDAS kids was 110-200, with a mean about 145. If you didn't get that study, give me your email and I'll send it to you.