Kay

Ok thanks for all who have answered so far. It looks like it is either, I guess that answers my question. Anyone else who wants to chime in please do.

I am just wondering, I read about a lot of our children having the rages and a lot of times it seems that Mycoplasma is involved. I wonder if we could sound off here just to get an idea if it is just children with Mycoplasma P that have the rages? If Mycoplasma P comes up on your blood test is it high Igg or Igm? If Mycoplasma does not show up for you and you have rages could you also respond. I will start. Mycoplasma P High Igg negative Igm Yes rages. Thanks. Kay

We use a dairy free as well and also cut back on what we were taking. taking 1 2.5 bill twice a day, she was double that but felt bloated...we also switched from Omnicef to Augmentin at the same time as the reduction in probiotics and the bloat has gone down so not sure really which it was or both possibly.

Thanks! forwarded this on to a friend, her daughter has crohns, I find it interesting that her daughter lived with me over the summer after graduating from high school, she shared a room with my daughter and both of them have ended up with similar issues. She with crohns and anxiety and my daughter with Pandas and stomach (digestive, ibs?) issues have played a big part with her as well. I am sure her mom will find it interesting research. thanks. and

It says southern CT I think more down by Dr. B which is Fairfield County. I am southeast CT, which encompasses New London County, Old Lyme, Lyme, East Lyme, New London, Stonington and towns inland. I could be wrong but the persons name listed for the support group is also listed in another place on the website as Trumbull CT so they must have one there, which is good.

Hang in there. The same thing happened to us when we were waiting to see Dr. Leckman, we started making an appointment with him in January, after filling out paper work finally had a date in April and the week before they called and had to push it back another 2 weeks. we wanted to cry too, I thought the same thing, don't they know how much it takes us to hold on. In the end we made it, had a great appointment, he was the nicest man ever and I am sure the same will be true with Dr. K. Hang in there!

Glad your son is doing better now. Is he on any kind of antibiotics after having the IVIG?

I guess Nancy and I were answering at the same time, sorry for duplicate information.

My daughter is 19 and we believe she has had Pandas for a while. Her biggest exacerbation came at age 17 when she was exposed to strep by a friend who had a confirmed case. It took us a couple of yeas to find out what it was she has and right now we are using antibiotics as treatment and will consider IVIG down the road. If you read Dr K's website http://webpediatrics.com/pandas.html Pediatric onset. The first symptoms of PANDAS are most likely to occur between 5 and 7 years of age. Symptoms can occur as early as 18 months of age or as late as 10 years of age. If the first clinically recognized episode is detected after the age of 10, it is unlikely true initial episode, but the recurrent one. Previous episode(s) were simply not recognized as such you will see that it is more likely that the onset was earlier in life which is what we believe happened to my daughter but it did not really advance until that exposure. She remembers other times when some ocd crept into her life and it was likely when she was exposed but it never took off like the one at 17. Here too is a list of doctors by state. http://www.latitudes.org/forums/index.php?...&hl=doctors Read these boards you will see comments as well on who is using who and for what reasons, many of the doctors are willing to help someone in your state if they are not knowledgeable of Pandas. Hope this is helpful. Kay

Good thoughts Peg going out to you and your daughter for this next round of IVIG, hoping you get the results you need. That smile says it all doesn't it!

Not sure if this is helpful or not but my daughter had been on augmentin 875 2 x a day for 28 days and then was off to see if good effects would last. They did not and she was given dose of augmentin 500 2 x a day. after being on that for about 5 days she began to experience anxiety attacks about 2 hours after each dose that would last about an hour or so and then she would be fine until the next dose. We did go off at that time and she was put back on the higher dose (she did not experience the attacks then) however all the up and down and stress (we think) messed with her stomach and she had to go off all together at that point...but it was odd about the anxiety attacks that came after she took the dose. She later was put on Omnicef and had no issues with anxiety and dose. Maybe it is just how their bodies react to certain antibiotics. I don't know for sure and none of the doctors really had a thought on it. Kay

Thanks May, I have had it checked twice it is not painful to me, sometimes like I said have to rub it in the morning to open but I don't even have discharge from it. floaters yes. I have had it checked twice (both said allergies and or one said not enough tears) before but when I saw this I thought well something else to look into with a pandas kid but thanks so much for all the info, it was very helpful. Thanks. Kay Hi Kay, I have never heard of a swollen eyelid being a symptom of uveitis. I would get your eye checked out ASAP but not fear that it is uveitis. Yes, some of your symptoms are consistent with uveitis, but uveitis is very rare. I suspect an eye infection, cataracts, or allergies in your case. The definition of uveitis is white blood cells (inflammation) in the uvea. The only way to diagnose uveitis is to go to an ophthalmologist who has experience with it. It can be difficult to see the white blood cells darting around and can easily be missed in a routine exam especially if there are only a few cells. The doctor uses a machine called a slit lamp that allows her/ him to see white blood cells darting around in the eye. My children have painless uveitis. However, most adults have painful uveitis that is unbearable. Symptoms are pain in the eye, redness, blurry vision, floaters, and sensitivity to light. Uveitis can be caused by infection but is most common in persons with autoimmune disease. It is recommended that children with autoimmune disease (esp. JRA) be checked every three months. This is because children are less likely to have pain. We did not discover that my children had it until my daughter suffered vision loss. Unlike pandas, the white blood cells in uveitis are destructive and can cause permanent damage to the eye. I was glad to read that in pandas the white blood cells only interfere with the brain and do not permanently damage it. May

These post on mycoplasma are timely. We have been thinking about this for the last couple of days whether to change the antibiotic and treat this. My daughter had a high IGG but not the IGM and have been told by 3 docs not to worry about it. It has been on my mind for quite awhile and with these new post I am thinking we need to do something. So thanks everyone who continues to post all your information. I know sometimes I might decide not to post certain things because I wonder if it is just us and maybe no one else will benefit but I think I am wrong, I have gained a lot of knowledge from everyones post. Thanks. Kay

Thanks Pam, my daughter too had eyesight problems, hers seemed to decline quickly through the last few years and now that she had been on the antibiotic for awhile, they were able to decrease her prescription...so it is interesting. My eye however I think I should have checked again, I just kind of live wtih it but like right now I know it is swollen which is normal for me now but I can feel it on my eye. So I don't know if it swells from the outside or it is something under the lid that is causing it and if it is in any way related to this whole deal I would want to know. Kay

I have had the swollen eyelid for quite a few years I had it checked out twice and they seemed to think it was allergy due to pollen or what have you. It never goes away and I did see that blepharitis but it is not that, that is the one with the swelling of the eyelid by the lashes and or crusty stuff, I don't have that. My daughter was quite small the first time I got it and I think it came and went for years but now it seems here to stay for the last 4 or so. Thanks for the info. Kay

For anyone who has the uveitis, can you tell me if one of the symptoms is a swollen eyelid? I have read about it and looked at pictures and I seem to have some of the symptoms of it the bloodshot eye as well as feeling like there is something in it, I have floaters some that are rather large and also feel like there is a film once in awhile that covers the eye. My biggest symptom though. one that is persistant is the swollen eyelid. I sometimes have to rub my eye before opening it in the morning to get it to open but it is unlike another condition that is swollen or crusty around the eyelash are, I do not have that. I just had my titers done for strep and did not show anything but I am wondering if this could be contributing to my daughters illness. Thanks for any information. Kay My daughter has both uveitis and PANDAS. My son also has uveitis but no PANDAS. My daughter has had uveitis for a few years now, but as far as we know, has only had pandas since February. I did some research on the strep connection with uveitis. Unfortunately, there is no way to tell if the strep triggered the idiopathic uveitis, and it would not change treatment. I.E. Antibiotics for strep will not treat the uveitis. The studies on this are decades old, but I’d have to agree as my daughter’s uveitis is not doing well with her on antibiotics. I hit a wall trying to find more information on this. In some instances, uveitis has a genetic link but not always. So, do don't fear that your child will get uveitis, but do keep an eye on it. It is very common for uveitis suffers (as with most autoimmune diseases) to flare when they are sick regardless of the bacteria or virus. We see that our pandas' children flare/ get worse when they are sick. The interesting thing in my children’s case is their uveitis actually gets better when they are sick. For my daughter, our pandas doctor thinks that when she got sick the t-cells decide to leave the eyes and attack the brain… only temporarily. Her immune system is chaotic. If you are interested in natural remedies for your uveitis, I invite you to join my yahoo board uveitis_patients_helping_patients. May

Got mine too!!!!!

thanks for update

Thank you Wendy for the additional information, the supplement information as well. I am glad your children are doing better. We have been hoping too that the antibiotics will hold out for us too. Kay

Can I ask on your son and daughter that are improving on the antibiotic has it only been the antibiotic that has been used and the same dose and how long has it been? I ask because we have only used antibiotic so far and have had some good results. Thanks. Kay

I have been gluten free at least 18 years and my daughter has been for the last 3 or so as well as dairy free. It has helped both of us. My daughter did not have positive test for gluten as an issue but did have just for wheat, but she knows she cannot tolerate other grains as well and it could be the gluten in each of them so we have just cut it out all together. I was tested for celiac way back by a doctor who did not feel I had that but what I do have is an intolerance to gluten, after testing ok for grains except white flour, I then used to try to eat whole grains and it never worked and that is when I stopped any and all grains and gluten and have not had issues since. You don't have to be full blown celiac to have problems with grains/gluten. I can do rice and corn without issues, some can not do that. It has been so long now that I do not find it a hardship nor does my daughter, there are plenty of things to eat now, much more then when I first started and we have just adapted and I know some people feel it is much more expensive to eat gluten free, I do not find that an issue. I can by a lot of items in stop and shop and some things in our health food store that are not over the top. Hope this is helpful. Kay

It is just another bit of information to have. One doctor said it wouldn't hurt to do it and the other one said yes to do it. My daughter did not have high levels on aso or dnase, so the Cunningham test ended up being helpful to us, although it is not a dx it does at least give you information that something is going on and that is reasurring. It cost 400.00 the kit is sent to you with a fedex label for an overnight shipment to send it back. It took about two weeks for us to get the first information via email, still awaiting final write up from Dr. Cunningham. You can do it while on antibiotics but not the steroids. I see on here some people have had issues with labs drawing the blood since it is not being run at their labs, but also see that some labs have been very helpful you would want to check with the lab you use. I had my naturopath draw the blood and spin it (directions and all tubes included in the kit) and then I sent it via fedex to Dr. Cunningham. You can't send it on a Friday because it is an overnight shipment and no one is there to recieve it on the weekend, so be sure to do it early in the week.

thank you

Great I guess that was what I was waiting for. Thanks, maybe with being at the autism one conf. she is a bit behind, I will be wait then. thanks! About a week after the email, I received a hard copy in the mail w/ personal comments from Dr. Cunningham...was a very nice thing to show the doctor.

just wondering if any of you have gotten a written report from Dr. Cunningham? Is that what we are suppose to receive? I rec'd emails one about what the camk score was and one about the titers but no explanations. Anyone have any info on a final report that might be on its way?