KaraM

I'm pretty sure Browneye's story included something like that. If she doesn't chime in, take a look at her posts from late 2010...

I'll keep my eye out... Good luck with your appt. Kara

We have a follow up for my PANDAS dd8 and nonPANDAS ds11 tomorrow. DD8 has been in exacerbation since Nov/Dec. Dr. B. thinks due exposure to ds11 strep or possibly some other infection in dd8. Both have been on various abx (dd for a year, ds since Dec). We should be getting IgeneX results tomorrow, too. Anyway, if anyone else is going to be there, let me know. Our appointments are first thing in the a.m.

Please let me know if you can come and invite others who may be interested. If there are questions before the next meeting let me know as well. I will PM or email you the location. Thanks, Kara

Even though our specialist has ordered the tests, our pediatrician get's the results as well (except for IgeneX). I often just call there to get the results (without interpretation). They have more office staff (some who know us better than others) and a "records" dept. So they will either read results over the phone or print out copies for me. I agree with LLM that if the doctor has to spend more than a few minutes time interpreting and having a phone consultation, it is like a follow up visit. The amount would therefore correspond with how much time the doc has to spend... I have had a phone consult that was not covered by insurance (I think we use the same doc). It wasn't to review lab results specifically, but to try to determine what was causing exacerbation in my daughter and determine next steps. I think it was between $200 and $300. It stinks that it wasn't covered. But on the other hand, we usually have to travel and stay overnight to see the doc, so out of pocket we probably spent less than we would have on a o visit.

Hi Formedbrds, You said IVIGs did nothing. How many did you do? Were they high dose? We haven't done IVIG yet but know our doc is going to bring it up soon, so want to hear all sides. We had luck with abx for about 8 months, but our luck seems to have run out... thanks, Kara

I've experienced both some awareness and lack of awareness with my dd8. I don't even know where to begin or how to organize this response. It's going to be a stream of consicousness (probably because we just went out to dinner and I had a much needed and long awaited 1 1/2 Lemon Drop Martini's - meanwhile my dd8 had to leave the restaurant because she saw someone in a wheel chair and was afraid she might catch their disability...but I digress) Last year she would often have PANDAS rages. At one lucid point, she drew a picture of a rectangular box which represented her brain. In the top right hand corner, she drew a bunch of lines coming into the box and wrote the word next to them "uh oh bad." Inside the box was a bunch of scribbles. Coming out of the bottom left hand corner was a shower head and streams of lines. Next to that she wrote, "by by good." This was an indicator to me of how these rages come in waves or distinct episodes. My reason for mentioning this is that now I ask her if "it"(meaning the picture) is happening. She knows what I'm talking about and can have a conversation about it when "it" is not happening. However, she can't verbalize it or admit to it when I ask her if 'it" is happening. Here is another conversation I had with her after she started abx last year and was doing a lot better. I asked her if she "felt" better. She said she did. I asked her "how" she felt better. She couldn't say. So I asked where she felt better and then asked if she felt better in her stomach. She just looked me dead on (which was also new) and (I wish I had a video of this), wiggled her head to the beat of her word with a tone telling me I was an idiot for asking, and said "IN MY HEAD." So, I guess I'm saying here, that I think sometimes they are aware and sometimes they aren't. Sometimes they are aware, but just can't articulate. And, sometimes they do hide it - whether consicously or subconcisouly. I see this right now with her ability to hide things at school. She's definitely embarrased about her thoughts and fears and does not want others to know, so somehow or other, she keeps it under wraps. Kara

Hi Michelle, Welcome. Pencil in Saturday, May 7th, from 12:30 - 2:00. That's what we're shooting for. Send me your email and I'll add you to the group's email list so you have the location, etc. (you can either PM or email me if you don't want to post your email address.) Anyone else is welcome. If you are interested, just let me know. Kara

I spoke with our insurance company (Tufts) and they said they would cover it if I got a letter of medical necessity from the doctor. I plan on asking Dr. B for that when we see him again on Monday. I hear you about the cost, though!! We had to do it for both kids. Try calling BCBS and asking whether they would cover if you get a letter of necessity.

As for the blood draw, I think Kathy would be able to answer that. It may depend on the temperature the blood has been kept at. I know they request that you not ship it so it ends up sitting over the weekend. The kit includes and ice pack to keep the sample cool during in transit.

Hi, I suggest checking in again. From what I understand, they are very busy. And, they are only human. Your request may have just been overlooked somehow. When I made the request for the test kit last year, I got a reply from Dr. C saying it would be sent out, but two weeks went by and I never received. I finally checked back and requested again. I got it within a couple of days. You may want to contact one of Dr. C's associates, Kathy Alvarerez, to check on the status of your request, too. She is the one that I ended up communicating the most with in the end... Kathy-Alvarez@ouhsc.edu Here is the email I have for Dr. C. just in case the one you have is different. email: madeleine-cunningham@ouhsc.edu Good luck. Kara

Congratulations! I'm thrilled for you, your son and your family. And thank you for sharing. Kara

Ditto!

Thanks for your reply, Nancy. I had a feeling it couldn't be that simple or we would all be doing it...

I know there has been imaging done on PANDAS kids that shows swelling in the basal gangia. I also know there has been imaging on the brains of people with OCD that shows activity in certain areas of the brain...Would it make sense to get an MRI to help confirm whether you are dealing with traditional OCD or PANDAS? Could it some how show an opening in the BBB? Has anyone on here had their child get an MRI? I am starting to doubt the PANDAS/PITAND diagnosis (in spite of high Cam, positive blood test for strep and response to abx last year). We've been in exacerbation since Nov/Dec and see no sign of it letting up. We've all been tested for strep. Brother had it and has been on 3 different abx since Dec. PANDAS DD8 also tried two additional abx. Waiting for IgeneX results. Next appointment with DR. B a week from Monday. I'm starting to wonder if we should try an SSRI, even though I really don't want to. Doing the ERP isn't really helping much alone. Thanks, Kara

I'm curious about this, too. We are waiting on results from IGenex. But physically, our daughter is very healthy as far as we can see. Other than a stomach bug and a couple of days with a low grade fever/headache/stomach ache last month, she has been very healthy. Until then, she hadn't missed a day of school this school year. Unofrtunatley, OCD is very bad right now. It will be interesting to see the Igenex results...

My dd8 often will ask for a drink, take a couple sips than save it for later, never to return. I don't know if she does that due to OCD or because she knows I get super annoyed with wasting food and thinks this will appease me.

We had our first meeing today. It was great to put screen name's with faces and stories! Three of us from this board were there, plus another seven. Ten in total! We met for about 1 1/2 hours, which gave us all time to introduce ourselves, share our stories and ask some questions. We'll be meeting again in about a month...details TBA Thanks for coming! Kara

Bumping one last time before tomorrow's meeting.

The secretary at our pediatrician's office graciously read me the results of some of my dd8's tests that were ordered by Dr. B. (I'm going to pick up print outs later today.) One she said was "high" was the Haemophilus influenzae Type B IgG. Her results was 3.06. I tried to research on line but am confused. It sounds like it measures the response to HIB vaccine and that a low response indicates poosible immuno deficiency. It doesn't really say anything about a "high" response. Can anyone shed any light.? Also, for the ASO she read me 2 numbers. We've never gotten two numbers before. She said the O titer was 64 and the B titer was 252. She gave me a separate results for Anti DNAse (265 - normal). Does anyone have any idea why there are two ASO numbers and what they mean? Dr. B's nurses said he would discuss the results with us when we see him again at the end of the month, but I really can't wait that long to get some sort of understanding. Thanks, Kara

We did a 21 day tapered burst for my dd8. She did not improve during that time. Since we've stopped she's deteriorated even more. Dr. B. said he thought that the reason she did not respond was that there is still an infection her immune system is responding to - either in her or in someone in the family (we suspect her brother). So he ordered more test. We are waiting for results still.

Bumping as a reminder...

I just PMd you three names from the PRN list. I don't have any experience with them. A lot of the docs on that list come from the doctors discussion in the helpful threads section on this forum. So you may be able to find out a little more about them there or post a question asking people to PM you with their experiences. The list is a few months old - so they may or may not still be on the list. But it's a place to start. You could call and ask some questions about whether/how they treat PANDAS. Kara

No - she responded so well to Zithromax last year. But with this exacerbation Dr. B said we may have to consider it but would wait until the latest test results come back before really discussing.