KaraM

I agree with the recommendation to go to a phlebotomist. And call ahead of time to find out which one is best/most experienced/successful at drawing blood from children. You could also ask if they have for any recommendations on how to prepare your daughter so that the draw is more likely to be successful (i.e. like drinking water before hand). Kara

I don't live in KY, but got this name off of the PRN list. This list is made up of names parents recommended because they had a good experience. It does not necessarily mean they are PANDAS experts - or that they are accepting new patients. But if you are struggling to come up with someone to see locally, you could start here. Dr. Vinay Puri Neurologist 601South Floyd Street 500 Louisville, KY 40202 502-589-8033 I think a lot of the parents on this board, myself included, would recommend going straight to one of the top PANDAS docs if you can, though. From what I understand, Dr. K in Chicago and Dr. T in New Jersey will do phone consults. Dr. B is in CT, Dr. L is in Maryland. I can give you the contact info for any of those if you want to pursue. You can also find them in the doctors list pinned in the Helpful Threads section at the top of this forum. Kara

Thanks for this idea. PANDAS struck my dd8 just at the time kids are really supposed to be learning to read. After treatment she supposedly reached grade level, but it seems like she just does not enjoy it. It's a struggle to get her to sit down with a book - even for the the 20 minute a day school goal/requirement. I also question her comprehension level. Even though she may get the words - she doesn't seem to be able to put all the ideas together. I think a lot of this comes with practice (reading regularly). Maybe something like this will help get her more interested. I'll go to the library and see what books they have in both print and audio. thanks again, kara

Our dd8, 62 lbs in on 250mg daily. Dr. B prescribed this dose. She has been on it since April.

Holly, I'll keep you all in my thoughts and hope for the best. Kara

Awesome. You and your son deserve a response like this. Congratulations! Kara

My understanding, too, is that the risk of a particular strain becoming resistant to antibiotics comes from not completing a dose properly. So, if you stop taking the abx before the infection is gone, then the bacteria starts to grow again and becomes more immune to the abx. Does that make sense? Have others heard that as well. As for the stomach issues, have you been giving your child probiotics as well. They help replace the good bacteria that the abx are also helping to kill. At a minimum, yogurt with live active cultures. Some will say make sure the live active cultures do not include strep cultures....those that begin with "s." on the ingredient list. I think kids sensitivity to this varies. So you either experiment or play it safe... Kefir is a yogurt drink that I think does not have any s. live cultures. You could also add a supplement such as Culturelle (that is the one Dr. B. recommended to us). If you search on "probiotics' on this forum, you should see a lot of discussion. Kara

For myco, you'll need an abx that takes care of intracellular microbes. Zithromax does that, right? I believe that's what the FAQ says...Just want to make sure I'm understanding correctly. Thanks again, Kara

Is the antibiotic/medical treatment similar for Myco P/PITAND as it is for strep/PANDAS?

ONe of my dd's symptoms was holding her saliva for a very long time - up to 20 minutes - then spitting it all out. She didn't want to swallow the germs from the air. She did this prior to our discovering she had PANDAS and it resolved on it's own when she started ERP therapy. I suggest, while waiting for the antibiotics to work, to start some ERP exercises (exposure and response prevention). First have your child rank the different things that cause fear/anxiety (on a scale of 1 - 10) and what he's doing to calm the fear. (Spitting is probably one of the things - unless it's caused by something other than OCD). Take one or two of the lower ranked obsessions and compulsions and slowly try to overcome those. So if spitting is one of the compulsions, if he's doing it frequently, see if he can prolong the amount of time before he spits (or swallow a little) - not sure what the right response prevention would be - it probably depends on the reason for the spitting... Some books to help would be the children's workbook : What to Do When Your Brain Gets Stuck For you and you and your child together: Talking Back To OCD Kara

I'm not sure how many people have seen this, so I thought I'd post it. It could help explain to our kids (and us) about what's going on with our children's immune systems and why IVIG may help... http://www.primaryimmune.org/publications/book_immunesys/book_immunesys.htm Kara

For comparison purposes, my dd's major symptoms were: OCD/germ contamination fears with avoidance rituals. - some washing and holding saliva, too. Major rages and mood swings, some fight or flight. Some minor symptoms: A little bit of separation anxiety - but more about leaving home than me. Her social skills deterioriated Her handwriting did not change very much - maybe a little. Her artistic skills weren't as strong - but still not a huge difference. Her math skills seemed a little weaker, too (still do). But again - not a dramatic difference. She had no tics or Chorea movements Her Cam score was 189 She's doing very well now on prophylactic Zithromax.

Not sure I have great suggestions - but I can relate, completely. My dd8 has PANDAS. My ds11 does not. Last year, when she was going through everything, he was impacted greately. Her rages would scare him enough that he would hide under the covers. Sometimes they were directed at him, because he would "contaminate" things (like all the food in the fridge just by walking by). I have to give him credit. He was pretty patient with her. But as the months went by, his temper would started getting short and he would end up screaming at his cousins or pushing a friend (very uncharacteristic). He got much less attention from us and we were able to do much less as a family. During Feb. vacation last year, we left the house once. Eventually, I just tried to get him away from her/the house as much as possible so he wouldn't have to be subject to everything. He would sleep at my parents every now and then or hang out with cousins or friend for the day. I also tried to get him involved in some other activities. Logistics were difficult, but we pulled it off. I had him read Up and Down the Worry Hill and some other OCD publications geared toward children. I also tried to explain what is happening in her body so he could see it's out of her control. I also tried to compare it to his allergies and asthma or times when he's had pneumonia and ended up in the hosptial. He could not control any of those things and at those times, he got a lot more attention from us than she did. I know a parent is best, but maybe you can find another special adult to spend some extra time with your other child while your family is in this crisis. One other thing, he did end up talking with Erin's OCD therapist a few times, too. Kara

I think it is the icing on the cake in terms of diagnosis. If you have the clinical symptoms (i.e. OCD/tics/etc.) and relatively "sudden onset" the C test be one more piece to the puzzle. Throw in a postive strep test and your golden (but I know a lot of us don't have that part). When we saw Dr. B for the first time, our dd7 had started exhibiting PANDAS symptoms slowly over the course of three months or so - than bam, she couldn't get dressed due to contamination fears. She had a negative throat culture. A few months later, we did a blood test. It was only slightly elevated. We did the C test and her Cam score was 189. After hearing her history, Dr. B. said it was possible she had PANDAS. When I told him we had already done the C test and what her Cam Score was his eyes widened and he said he was confident she has PANDAS.

Has anyone ever read "Waiting for Benjamin?" It is about an Autistic child. I haven't but just found it on line. Here is a link and the description: http://www.marcoproducts.com/waitingbenjamin.html When a younger sibling acts differently, it is often hard for the older sibling too understand Benjamin is Alexander’s younger brother, but he doesn’t behave like other little boys. Alexander is confused. Alexander is eight-years-old. This touching story centers on a common theme found in homes and classrooms—lack of understanding someone whose behavior is different. The story: • Examines the behavior of an autistic child • Reveals the feelings of rejection, confusion, and fear of the older child • Gives an explanation of autism as one would explain it to a child TOPIC: Autism INCLUDES: Story AUTHOR: Alexandra Jessup Altman GRADE LEVELS: 1-4/AGES: 6-9 RECOMMENDED FOR: Elementary-school counselors, special education personnel, parents 8 x 10, 32 pages, Hardcover, Color Illustrations, 2008

In their thank you's did anyone mention how sometimes those strep tests can be negative, but a child can still have PANDAS? I will when I send mine. But it might be good to hear from more than one source.

I actually have a copy of an article from a 2003 or 2004 issue of School Nurse news. PM me with your email if you want it. Kara

Hi Everyone, We know how difficult this is for those of us who can speak English. It looks like there is a child in our school whose parents are new to the country and whose mother speaks little English. The teacher is meeting with her tomorrow (hopefully with a translator for at least part of the meeting) and wants to encourage her to look into it (awesome, right!) I may go, too (I work in the school as a math tutor). I would love to be able to give the mother a contact of another PANDAS parent who can speak Spanish so she has someone to give her a little guidance and support. Please PM or email me if you think you can help out. Thanks, Kara

Congratulations on your decision!! We stayed at the Doubletree in Norwalk. It's about 5 minutes away. It has a very warm pool and they give fresh, warm give cookies when you arrive. It's not exactly cheap, but I don't think anything clean and reputable is going to be in that part of the country - too close to NYC. The first time we went down, we stayed at a Marriot in Stamford, but it's not as close and I think it was a little more expensive ( a little fancier, though, too - with a hot tub in addition to a pool). Also, if you have some extra time, there is an aquarium/maritime center that was nice to visit - not too big. Our kids, 8 and 10, enjoyed it very much. And right across the street from that, a good restaurant for Thai food (if you like it). Kara

Hi Tresse, What is Perpera vasculitis and how was it diagnosed? Is it a test or a clinical diagnosis based on how it appears? I know the strep test was negative, but is it possible that it misdiagnosed and was actually strep in the skin? As for the Lyme - I think a lot of parents on here have had experience with Lyme and might say that it could still be lurking (I'm not an expert at all in that area - no experience - just read other's posts). Hopefully some of them will chime in. Kara

Heres the link to make it easier: http://www.latitudes.org/donate.html

Well, I can't say I am good at fund raising or able to offer help in that area, but I did just go and make a donation. If everyone on this board (and the other boards) donates something, hopefully it will add up to enough to make the difference ACN needs. I think all of us who are active on this board would agree this forum has been invaluable. Kara

Seeing your initials there was like hearing the voice of a good friend you haven't seen in a long time. You've given so much. Remember there are lots of people here ready be there for you as well. Welcome back. Kara

Have you done the Cunningham Test?

I'm glad you were bored.