KaraM

Not sure if our current exacerbation is due to expsoure or something else. It does not seem like our PANDAS dd8 has any type of infection and we know her brother did have strep. So we are treating it as exposure triggered. Our dd8 has been in exacerbation since Nov/Dec. We didn't start treating her brother until mid December. He ends his abx treatment today and it appears as if he is clear. But in spite of this, she is still not doing well. When we talked to Dr. B a couple of weeks ago, I asked how long it would take once her brother's infection was cleared. He said every kid is different and that it could be anywhere from a few days to a few weeks... Kara

Ditto - keep us posted!!! Congratulations! Kara

I was going to suggest this as well. Dr. B. thinks this is why my nonPANDAS son keeps getting sore throats. He has a lot of allergies and his Ig(M?) was really high (the one that shows allergy reaction). He thought the allergies were causing so much inflammation that the infection would never really clear. He switched him from Zith to Biaxin (as well as a steroid and expectorant that we stopped a couple days into it due to some sort of reaction....). But we kept him on the Biaxin. He is almost done with the dose and does seem to be doing much better. (Unfortunately, my PANDAS dd8 is still getting worse). I digress... Anyway, the point is, maybe you have something goine on that is preventing the Zith from truly clearing the strep infection and perhaps a different antibiotic for a longer period of time would help clear it.

If you like Thai food, there is a good restaurant across from the Maritime Aquarium downtown NOrfolk. We ate there after a visit to the aquarium, then drove about 10 minutes to the Doubletree. Please post if there are any decent eats you find near the center or Doubletree. I looked in the forecast and see snow showers next Tues as well; we'll be driving from Phila; about 3 hours. Thanks! Jill

I know there's power in numbers, so wanted to add that I have lost it too, on more than one occasion. You are not alone. You are doing an amazing job fighting for your child. You both are going to make it through. Kara

It brought us from thinking she had a 5% chance of having PANDAS to 95% chance. It gaves us ammunition to present to our pediatrician to start treating her for an infection. The improvement on antibiotics and an ultimate diagnosis from Dr. B. confirmed it 100%.

When she takes the liquid, we have the pharmacy flavor it with rasberry (they can do many different flavors). We found putting a timer on helped. She would see the count down and drink it before it hit zero. Depending on the day, that alone was enough. Sometimes, we'd have to threaten taking away a privilege that was important to her - like play time with a friend or screen time. Sometimes we'd offer an incentive. She wanted to try a pill. Crushed it is nasty. But if you can just cut it into two or three pieces so they're easy to swallow, then the taste may not be as bad.

Dr. B. had faxed us an order last week for a complete immune workup, including Lyme. We had his blood drawn yesterday, so we will see how that turns out. My son is slowly improving. The pain in his armpits, etc., has continued to subside. His sinuses are much better as well. The only major complaing now, is a stomach ache that comes and goes. I'm thinking this is caused by the antibiotics - but am also wondering about lactose intolerance. Now I just need my PANDAS daughter to improve as my son gets better!

The pain is not in the muscles or joints. First time complaining of pain in these areas. He is taking clarithromycin (Biaxin?). I think this is his first time on that particular abx. He is allergic to amoxycillan so can not take augmentin. Maybe the charcoal might help. I'll talk with Dr. B about adding that in. We've never used it before. I've thought about motrin - but didn't want to give him anything more the other night when this started ( he was already taking the steroid, abx, an expectorant and the probiotics). And yesterday, I wanted to stick to adding one thing at a time - plus I know the motrin can upset the stomach. Stuck between a rock and a hard place.

We had the opposite experience with Zithro. Our dd8 was on 200mg liquid. She hated it, too, and asked for a pill. So the doc switched her to the lowest dose pill (250mg). Shortly after, she started to decline. We thought it might be because she wasn't absorbing the pill as well as the liquid. But neither the doc nor pharmacist thought that would be the case. Dr. B. thinks her decline is due to her brother's strep and sinus infection (which we are trying to treat). I am inclined to believe the med switch is not the cause of the decline, since we switched back to the liquid so we we could increase her dose to 350mg again. She's been on the liquid again for a few weeks, unfortunately to no avail. Not sure if this helps or not. I can't imagine why the doctor would not switch back, though. Curious - why did you switch from pill to liquid? Kara

No. We stopped everything. The plan is to add back one thing at a time. So yesterday we just gave him the abx (and culturelle).

We had no internet service for most of the day yesterday...I was losing my mind - I felt so helpless! My son did not have any more armpit pain in the morning. So we gave him the morning dose of abx. He had stomach pain on and off (that's been going on for a few days at least) - but none of the armpit, above the hip, lower back pain that put him into tears the night before. So we gave him the evening dose after supper. Around 6:30 or so, he started saying the pain was coming back. It never reached the level of the night before, but he was uncomfortable again. Could these be his lymph glands helping clear the infection? They don't really appear to be swollen, though. As for the stomach pain, I'm not sure if this is a reaction to the abx or other meds - or just a bug (something's been going around). We've been giving probiotics faithfully ever since he's been on abx. Dr. B wants me to call him again this morning to update - so I'll ask these questions of him as well. But you guys have always been great about give me things to think about and other questions to ask, so I thought I'd throw this out there. Any thoughts? Thanks, Kara

Thanks, everyone for your quick replies. I panicked after I had called the office numbersa couple of times and not even an answerting service picked up. I did find the number on the website. While we were waiting for him to call back, my son calmed down enough that we didn't feel the need to bring him to the ER. But he was very uncomfortable. Dr. B. said the reaction was not typical at all and didn't quite know what was causing it. He told me we should stop all the meds until he is symptom free, then we can try adding the abx back in first. If, during the night he got worse again, we were to take him to the ER. Well, we made it through. He fell asleep around 11 and is still sleeping now. So I guess that's a good sign. He was not itchy at all, no hives or anything that looked like what one would expect with an allergic reaction. This is my nonPANDAS child that we are treating for strep/sinus infection. If he's "herxing" what do you think it could be? Kara

Not sure if my son is having an allergic reaction to either the abx or steroid. He can't put his arms down - says it hurts to much. IT hurts when we touch him or even when he touches himself on various parts of his body. He's in tears. Not like him.

HI Stephani, My heart is aching for you and your children. I wish I had some sound advice for you about the steroids or other meds - but I think you actually know way more than I do. But I was wondering if, to take some pressure off of you, there is anyone you know and trust who can take your 2 year old for a couple of days. I know I hate it when my son is exposed to my daughter's rages. I also know having one less person to take care of can make things a bit easier (and my son is 11!). Plus, that may give time for the steroid to do what it needs to do and for you to get through the taper. Just a thought....I also know it can be hard to leave a 2 year old with someone else.... I'll be thinking of you. Kara

ditto on the ibuprofin. If you can't get the abx - have you considered ow about trying a natural abx like Olive Leaf Extract? We've never tried it - so I can' t speak from experience - just seen others post about it.

Hi, I did something similar last year with all of the school nurses in our city. Sounds like you have something prepared already. But if you'd like, I can share with you what I put together as well. Kara

You just need to email Dr. Cunningham with a request. They will send you a kit with the tubes for blood, instructions and some release forms, etc. You go to a local phlebotomy lab to have the blood drawn and then fed ex it back in the package they provide. Best to do the blood draw and send it early in the week so it doesn't sit over the weekend. Here is a link explaining the study a little more. At the botttom you will see her email address. http://www.pandasresourcenetwork.org/research-programs.html

Buster, First of all, let me say "thank you" for all the work you do to help the PANDAS cause. Your posts summarizing research, your surveys and charts are extremely helpful. I reallly like this chart. I see you have a ? in a few places. The one that hits home for me is the "gradual onset OCD." I continually struggle with the "sudden onset" criteria and distinguishing the difference between "waxing and waning" vs extreme exacerbations. When this all started for us, the OCD was not clear enough for us to pick up on. It built over the course of a few months. Even now, as our daughter has come into an exacerbation, it did not change overnight or even over the course of a week. We have slowly watched it build over the course of a couple of months - each day seems to be getting progressively worse. It's crystal clear now, but wasn't necessarily crystal clear a month ago. So from my personal experience, I would change the gradual ? to a "sometimes." Kara

Thanks everyone for your replies. We did have a complete immune workup (including Lyme) done last March and strep was the only thing that Dr. B remarked on, other than a lack of response to the Prevnar vaccine (which in the end was because she had only received 7 of the 21 whatchamacallits and low Tetanus (she's due for a booster). She was also tested for myco P in addition to strep in December. All negative. I'll ask Dr. B to send another order to do it all over again (or whatever he thinks makes sense). I'll take LLM's recommendation to have her brother re-tested to see if it clears. As for my steroid reluctance - I'm afraid, more than anything, of making her any more hyper than she is and exacerbating things. I know they are supposed to reduce inflammation and help make things better, but I've heard others say it hasn't worked. Any other thoughts?

Hi, A little background reminder. My dd8 was diagnosed with OCD a little over a year ago. We determined PANDAS at the end of March. We see Dr. B. She's been on Zithromax ever since. She had a great summer and early fall - got close to 100%. In November/December we started to notice a decline. Thought it might be due to a switch from liquid (200mg/day) to pill (250 mg/day) that we made at the end of Oct. But then figured out her brother had strep. He started abx a week or so before xmas. Dr. B. said dd8 should improve as brother was treated, but if she didn't we could increase her Zithro dose. Well - no improvement after first 10 days or so (my numbers might not be exact). In fact, slow decline. So we switched back to liquid (200mg). We gave it 5 days, still no improvement. We upped it to 350 mg (her original treatment dose that she was on for a month) on Monday. She's still not getting any better - slowly declining in my opinion. We also give her ibuprofin in the morning and after school. I'm uncomfortable that we've been doing this for a couple of weeks, but don't know what else to do. I don't think our pediatrician would prescribe a steroid burst. And I'm not sure I want to go down that path. We don't see Dr. B again until the end of February. I've had her blood tested several times since March and both her ASO and Anti DNase B have been going steadily down. Her most recent draw from 1/3/11 were ASO 78 and Anti D Nase B 292. She seems pretty healthy herself - other than PANDAS symptoms. Doesn't seem to be having any major colds, etc (of course as I say this now, she just walked in the room with a stuffy nose...). But still - she really hasn't been sick herself. DH had a blood draw to see if he was carrrying. I still need to do that, too. So - I guess I'm wondering if we should be testing for anything else? Should we do a throat culture on her anyway? Last Dec. she had a throat culture, but it came back negative. A few months later, she had positive ASO and Anti DNase. So I guess I'm not sure bringing her to the doc for a culture is worth it - especially since she has a fear of germ contamination and doc's office. Any thoughts/advice? Thanks, Kara

Does the ARF circle represent the 4% that have susceptibility or that actually have ARF?

Hi, A few weeks ago, someone posted article written by a neurologist in London who is PANDAS supportive. Maybe you can try to connect with him and see if he can either help you or refer you to a doctor in England who is familiar with PANDAS. His name is Dr. Gavin Giovannoni. The post question was about the Cunningham Study test results. This article was mentioned as a way to help explain some of them. I just latched on to the mention of London and thought it might be a lead for you. Here is a link to the Latitudes discussion: http://www.latitudes.org/forums/index.php?showtopic=11288 Kara<BR class=Apple-interchange-newline>

Any cance he's hitting puberty and is worried about something that happened while dreaming? (I have no experience in that area yet, so am not sure how obvious it would be to a parent washing sheets....)

Hopefully this is the beginning of an increasingly speedy recovery. Keep us posted. Kara