bronxmom2

I think if you work with her via phone consults only, you will need to have a very good pediatrician who will read her report and implement her recommendations (antibiotics, prednisone, etc.)-- but most of us don't have that, which is why we're reaching out to her in the first place. My feeling is that she's not a big believer in antibiotic therapy-- she's more interested in the steroids/PEX/IVIG side of it.

Hi, my ds is 8 days into a one-month course of prednisone. Dr. Latimer switched him from full strength (300/mg daily) to prophylactic (200/mg twice weekly) dose of zithromax, which has made me uneasy... because my understanding is that steroids further weaken the immune system. Now I have a bad cold. I don't think it's anything more than a cold, and my son does not seem sick, but we all know how these kids manifest illness... My instinct is to bump my son back up to a full strength dose of zithromax, which I can easily do because Dr. Latimer gave me a full year's worth of rx for the prophylactic dose. I am really nervous about a stupid cold undermining the effects of the prednisone. In fact I pulled him out of school just to try to keep him from getting sick. What do you guys think, should I give him the treatment dose of zith?

This is just my experience, but amox never helped my son at all. Didn't make a dent in his symptoms at all (or, for that matter, in the underlying infection that was raging through his body). Omnicef is what worked for us. It worked, for us, even better than zithromax, which most people on this board favor. I think Omnicef may be one of the strongest antibiotics and if you still think there's an infection lurking somewhere in your child, that's the one I would use, personally. I would try to switch right away. The dr. will probably tell you that Amox always works on strep... but it isn't true. Good luck.

In my recent meeting with Dr. Latimer she did say it seems boys are hit harder. She speculated that estrogen may be protective. I wondered if boys' behaviors, being inherently more aggressive and outward, whereas girls are more likely to go inward, aren't just harder for the people around them.

I have wondered about geographical clusters as well. I remember the mention of an apparent cluster in the Stanford area, but I thought maybe it was the unusual concentration of highly intelligent (mathematical) people...

I too wince at the "sudden onset" as part of the diagnostic criteria for pandas. Many of us have watched this insidious thing taking over our children for years before we had our "aha" moment.

I agree, that doctor's strange reluctance to speak freely about PANDAS was very telling (and frustrating) But the boy Sammy is so adorable, so happy and healthy, I wept anyway just looking at his face... oh please please let my son grow up and look like that one day! I keep going back to the clip just to look at his smile.

Mine is impaired is writing-- his spelling and penmanship are OK (not great) but the composing, getting thoughts on paper, are the real problem. Math computation is bad--math reasoning skills are strong-- so he gets really frustrated. His drawing is terrible, for the most part he simply don't do it. If you turn a timer on, he goes berserk and gets paralyzed with anxiety. Reading is a huge strength, thank god! He loses focus, can't follow directions, and does poorly in a group. After my meeting with his teacher last week, when I learned that he spends much of his day in the hallway for disrupting class (without even a book!) I pulled him from school. This way, I will also protect him from strep. He's upstairs reading right now. When the baby wakes up, we're going to spend the rest of the day in the playground. Wish me luck with this!

dc mom, are you doing the steroids now?

Don't really see any difference yet. It's only the second day. No worse, though. He claims to feel "less agitated" (his words) but he may just be telling me what I want to hear.

"To the point that my son is no longer enjoyable to be around and he is unpopular at school and picked on because he has a weird personality. He is bossy, argumentative, short tempered, somewhat regressed for his age (likes things other almost 10yr old have outgrown) only want to talk about his video games or marine biology until it bores you to death. Does all the talking and no listening" A perfect description of my son, who prior to this I would have described as unusually empathetic. It's heartbreaking.

Alicia, if you don't mind my asking, what next step did she prescribe?

A visit is $580 and she is not in-network for any insurance, you have to pay on the spot but the office will submit to your insurance (they are all REALLY nice there)...My insurance company said they would make an out of network exception and cover the visit if I could establish that his condition was not treated by any local doctors. This sounded reasonable, but I live in NYC so when I started calling neurologists they all said "Sure, I treat PANDAS!", though, as we all know, they don't really... in the end I gave up and paid the $580. It was worth it, though I drive 5 hours each way in one day with my PANDAS kid and we came home mentally and physically exhausted. I hope we are now on the right path. I don't know if she charges less for a phone visit.

Good luck getting the IVIG!vCould they try a longer course of prednisone?

this was featured in the science section of last tuesday's NY Times too... apparently the subway air is cleaner than the shower water.

thanks, I'll just hope for best. I mean really... hope to see the best in my son. Good luck to you. Is the steroid burst a preliminary to IVIG?

Hi, we're starting my son on a month of prednisone... I am worried, though... if extreme hyperactivity, impulsivity and emotional instability are amongst our worst symptoms...will the prednisone make these worse? Anyone have experience trying prednisone with a really hyper kid?

Will pixie be out of school indefinitely? I remember reading in one of your posts that she attends a private gifted school. Don't forget that your child's giftedness has not gone away. I wonder if you could find a tutor/mentor who could help keep her mentally stimulated, help her pursue her interests and passions in a non=threatening way? I fantasize about finding someone like this for my son. I'd like to hire a geeky college student whose job would be to talk to my son about WWII airplanes and old british tall ships.

Hey EAMom, I have access to that journal (Child Neurology) through my university if you want me to email you the full text.

Don't make him do the homework. My son also panics in the face of work that I know is easy for him. Imagine how it would feel to be mysteriously unable to process work you know you should easily understand. When you're already so anxious anyway. I think homework given by schools is uniquely torturous for PANDAS kids, who often can't write or do simple computations but are still very very bright. I try to find ways for him to "show what he knows" without provoking this panic-- for example I ask him questions about a book he's reading rather than having him fill out the comprehension forms, or play math games. This reassures us both. As far as azith... I am having some strange reaction too. It seems to have made him more emotional. Last year we used Cefdinir and it did not seem to have that affect. But the suggestion seems to that zithromax, like IVIG or steroids, might make things worse as it makes things better? Good luck!

The Azith. pills only come in 250mg and 500mg size...so unless you are doing liquid, 300mg is a harder dose to come by. You could do 1.5 of the 250mg's though, and that would be 375mg. My 54 pounder is on 250mg/day. we are doing the liquid, which has been a real pain because I have to refill it each 5 days. My pediatrician seemed unaware of the pill option. Thanks!

My son is about the same weight and was giving 300mg... but 250 mg is mentioned here frequently as a treatment dose.

Hi Lena, Initially, my pediatrician insisted on using ONLY amoxicillin prophyactically for my son, though I could see quite clearly that it did NOTHING for his behavioral symptoms. He kept insisting that amox was the only safe antibiotic long-term, that strep had never developed a resistance to amox, etc. And I kept saying: I just know it isn't working. He finally believed me when his titers just kept going up and up and up, despite a T&A. Hopefully, he learned something. Keep a close eye, and if you don't feel it's working, I urge you to insist on a broader-spectrum antibiotic. Cefdinir worked for us last year. Now we are using Zithromax. Good luck

I'm crying too! We are all so worried about the long-term future of our kids, though we hardly even realize it... as Vickie said we live day to day... thank you for posting!

We are on day 11 or 12 of azith and today his emotional state (meltdowns and rages) was so bad I had to keep him home from school. The azith is definitely making this worse, although in some other things he seems better. I had to drive some other kids to the school and when I came home he was standing in the window bawling because the garbage men were taking away our old coffee table. 10 minutes of uncontrolled sobbing over coffee table. OK, so if this is actually some weird sign of the brain inflammation being addressed, I can wait it out, but it has me very worried I fear we are also one of the "difficult cases"-- this has been going on for years.