monarchcat

Or even if you are choosing to vax, what other measures are you taking to try to avoid getting sick this year (or any past year). There is talk now that vitamin D is important for immune support, etc. and I think I'm going to start my PANDAS son on vit d. I've been hesitant with supplements until I can be sure that I am choosing wisely with regard to supplement, brand, dose and combination. I want to have a phone consult with Kelly Dorfman and see what she recommends at some point in the near future. So my questions are these: 1. Are you giving your child Vitamin D? What dosage? 2. Are you giving your child any other supplements specifically with the intention of warding off flu or other viruses? What are they and what are the doses?

Well, now I'm sooo confused because Dr. L's words to me about the h1n1 vaccine were "absolutely not". My son has no underlying conditions other than PANDAS as well. I guess she's changed her opinion in the last few weeks. I don't know what to do.

I haven't decided yet on the h1n1 vaccine for anyone in my family, though I don't think my PANDAS ds will get any vax this year regardless. It is my understanding, though, that the neither the seasonal vaccine nor the h1n1 vaccine currently contain any adjuvants. That would be a total deal-breaker for me and I would not even consider it at all for any of us if the vaccine contained squalene. Not to say that future doses won't have adjuvants added as they run low on vaccine, etc. This whole vaccine thing is driving me crazy! I am so torn. I know I really CAN'T vax my PANDAS ds, especially with h1n1 (Dr. Latimer said "absolutely not"), and though I've always vaxed us all with seasonal flu vaccine in the past, with all my new knowledge about autoimmune diseases, etc, I'm leaning toward not vaxing this year. Yet, the flu makes me nervous, though I am trying not to fall for the media/medical community/pharmaceutical company hysteria.

Hmmm... my son had coxsackievirus when he was four. I was pregnant with my daughter at the time. About 3 months later he turned five and that's when the "switch flipped" with behavior, etc. The tics didn't start til the following year, but I've always said something changed when he turned five.

You were right, Faith, our kids are certainly pretty similar! Sean's score was 193 and I was shocked, but I think he's had this for years as well. I'm glad you are seeing Dr. Latimer. She may or may not recommend PEX. She didn't in my son's case because even with his high CamK score, he is functioning pretty well so we are doing steroids for a month to see where that takes us.

Mayikaye was the person I messaged and I just heard back from her, so I did get the right person! I had given her the link here and she said she'll come over. Oddly, at the time I couldn't find her in the fan list. I probably just missed it. I did message the first person...it was a grandma (Kay). She was going to forward the msg to her daughter. In the msg. I included a link to Buster's info. on titers and also said they were welcome to post here as well. I didn't get to msg the second person who asked about low titers. I looked through the fan list...I think it was Marikaye. I will go ahead and send her a msg. I can see in the future...if we want to try to help out the parents, we might be better off being careful with our wording, and sending them messages instead of just relying on the comments. I suspect that Beth deleted our comments on purpose...and it was not a FB glitch. I'm not really sure what the best way to approach this situation is. Certainly we can help out individuals that post by sending them messages...but that doesn't really address the larger problem that Beth is a public figure that is propagating mis-information about PANDAS and actually might end up doing more harm than good. I have been thinking about writing a book review on Amazon (I'm pretty sure she can't delete that), explaining that she doesn't quite have all her facts right...so that might be a start. I understand that Beth is very against IVIG and plasmapheresis (feels that they are too dangerous), in addition to being a big proponent of ASO as a "test" for PANDAS. In her book she also discounts testing for anti-neural antibodies (isn't this what Dr. Cunningham is doing?).

I couldn't remember the original person who commented about low titers (I only "became a fan" after the discussion here yesterday so there were already many replies), but later in the thread there was a mom who said that they had pretty much discounted PANDAS due to low titers, and I *think* I remembered her name so I sent her a message on FB. Not sure if I got the right name, though. I haven't heard back from her.

It should be the current top thread on her page, but it appears that all the posts are gone, except for the first one from last Thursday.

I posted on the FB page as well this morning. I hate to think about parents giving up on the PANDAS diagnosis because doctors say low titers mean no PANDAS. Our first ped did that (based on extremely low ASO titer 5 weeks after a positive culture), and I moved on to a new dr.

He's got sort of puffy round looking face. I assume water retention? He's definitely gained a few pounds but I'm assuming that's a combination of some water weight and some weight because he's been eating like a horse. It's my understanding that all the side effects will disappear as he comes off the pred. At least I sure hope so! Of course, any "real" weight will have to be worked off somewhat I imagine. I know a lot of kids have had great results with a steroid burst. We haven't seen any real changes yet, but we'll wait and see.

I spoke with the dr. on call this weekend and he said he doesn't think the watery eyes are a direct pred side effect, except that pred can make the eyes dry and thus irritated, combined with his cold and the fact that his anxiety (thus tics) may be up because he's such an irritable little grump head (my words, not the dr.'s. LOL)... I haven't seen any changes as far as the PANDAS, but I'm not sure how I'd be able to tell at this point. He is in a MISERABLE mood most of the time. It feels a little different than PANDAS though so I think it's the pred. Tics may be diminishing a bit, but it's hard to tell. I think we'll have to wait it out and see what comes out of it all. He also has the moon face and ravenous appetite! I can't wait for the pred to be done!!

DS (8) is just finishing 2 weeks of 30mg/day of pred, and will be tapering down over the next two weeks. He's definitely been very edgy, irritable and belligerent over the past few days or so, and while that is one of his classic PANDAS symptoms, this seems a bit different and I'm thinking it's the prednisone. He's had a cough/cold the past several days and went back to school today after being out for two days. His class went on a field trip to a museum and he was anxious about it beforehand. He complained when he got home that his eyes bothered him all day. They seem to be very sensitive to light and very watery. He is constantly rubbing them. However, he has had a blinking/eye rubbing tic in the past and has seemed to be sensitive to light (especially florescent) in the past. Today seems much worse than usual, though and a little different (though certainly reminiscent) of the past eye tics. Could this be a side effect of the prednisone? I'm so happy that we are starting the taper, but he will still be on 20mg a day for the next week. Also, does it seem ok that he goes from 20mg/day for a week down to 10mg every other day for the fourth week? That's not too dramatic a drop, is it? This is his first steroid burst and it was prescribed by Dr. Latimer.

My son is 8, about 85lbs and was prescribed 20mg in the morning and 10mg at night for the first two weeks, then 10mg morning and 10mg evening for the third week, then 10 mg every other day for the fourth week.

My son's tics definitely quiet down when he is actively sick. They don't really change with a mild cold, but with strep, a fever, or a virus with fever, nausea, etc. they will be pretty much gone for a day or so if he really feels lousy. In fact, the one really truly "Aha! It's PANDAS"! episode where he got sudden severe tics right before coming down with strep, I noticed the tics stopped while he was really ill (several days after the tics started) then they started up again after he was feeling better.

I really didn't know if the extreme pickiness was PANDAS-related or not, but I'm very encouraged! My husband and I just kept giving each other "holy &*^%!" looks all night!

This blew me away tonight so I thought I'd share. My son started azith 1 month ago and has been doing great, with a few setbacks here and there. He started a steroid burst 6 days ago. Things had been going great, but I noticed the tics increasing over the past couple days and the mood getting a little darker and last night and today a DEFINITE increase in irritability and irrational arguments. I was getting disheartened. My son has for a long time now, been an extremely picky eater. He's almost phobic about trying new foods and has a very limited diet. Mostly pizza and other easy carbs... bagels, pancakes, etc. He would literally get terrified and panicked at the thought of having to try something new. SO... tonight, after being distressed all day that he is back-sliding after doing so well... my husband brought home chinese food for dinner for he and I. My son said, "What smells so good??" I offered him a piece of chicken with black bean sauce and he immediately ate it.. then proceeded to eat two platefuls of chicken with black bean sauce, rice and a scallion pancake. To see him do this is like having your dog walk up to you and start conversing in English. It's just... beyond consideration. Inconceivable. It reminds me how complex and deep-reaching this all is. How much it affects....

My son has very little, if any OCD. I believe there are some mild ocd tendencies in his thinking, but no outward displays. He presents with tics and behavior (angry, irritable, mood lability, etc.)

During my phone consultation with Dr. Latimer last week she suggested that I have all of our pets (3 cats and a dog) treated for strep. She said she used to recommend they be cultured, but that it seemed to be expensive and tricky and it's just easier to treat them all and be done with it. She mentioned that there may be a long-acting antibiotic shot that could be given to pets. How have you handled treating/testing your pets for strep? I am going to call my vet tomorrow and would like an idea of what I should be asking for. I have a feeling they are going to think I'm nuts!

I've given my son about 1.5g/day of omega 3 since he was 6. I'm a big believer in the benefits of omega 3 for everyone. I have no idea if it has helped or not, but who's to say that his symptoms wouldn't be worse without it? The times he has missed a week or so I have thought that I've seen a down-turn in behavior, but could be my imagination or coincidence. Other than that he gets a multivitamin every day (with no artificial colors/flavors) and a probiotic. I try to avoid artificial ingredients and am now becoming even more stringent. He just started a steroid burst so I don't want to add anything new at this time, but one of the things I really want to do soon is have a phone consultation with the nutritionist who has been mentioned here, but whose name currently escapes me...

DS (8, approx 80 lbs) started a steroid burst today. He is taking 20mg of pred in the am and 10 at night for the first two weeks, then tapering. About an hour or so after the first 20mg dose this morning he started complaining that his stomach was hurting. He just left w/ his dad to go to his guitar lesson because he didn't want to miss it, but I could tell he was starting not to feel well. He did eat pancakes at the same time he took the pred, so there was food in his stomach. I know prednisone can be harsh on the belly, but does this sound ok? Of course I'll see how he is as the day progresses, but wanted to see what your experiences were when/if your kids started pred.... thanks!

My son's behavior changed after his 5th birthday, then he developed tics around age 6 which was dismissed with a simple, "many children have tics, it will fade around puberty" by his pediatrician. When he was almost 8 he developed a sudden, severe new tic after being tic-free for several months and I started researching what could cause a sudden tic exacerbation. I found PANDAS and started putting the pieces together culminating with the Cunningham blood test this past August. When I suggested PANDAS to his ped back then (we have since switched) the dr agreed to check titers, but only checked ASO and when that came back extremely low (5 weeks following a pos. strep test no less) he discounted PANDAS entirely.

Hi and welcome! I agree that Dr. Latimer might be a good option for you. I am also in the Boston area and after two pediatricians who really don't know anything about PANDAS (I did my own research and diagnosing essentially) I am scheduled for a phone consultation with Dr. Latimer next week. I have a ped who will work with whatever treatment plan she recommends, but I decided that I had heard too many inconsistencies with the Drs in Boston and wanted to start with someone who understands this disease inside and out.

Interesting! I've always said that my son's behavior changed in the few weeks after his 5th birthday. He wasn't ticcing then, but he began getting very irritable, having temper tantrums (where he had never had them before, even as a baby/toddler), hitting and kicking. I believe now that that was the beginning of PANDAS for him.

For those who may have missed it, or who want to share it, I put it up on youtube.

It was a good segment, I thought. Sammy's case is so severe that many people may not associate it as something that could be to blame for their child's symptoms, but... MILLIONS of people just heard the term "PANDAS" for almost certainly the first time. That's fantastic and I'm thrilled.