Kay

Thanks for your posting, I have a question. My daughter was off of antibiotics in the last 14 days with the intent of having blood drawn to have the lyme testing done. I had read someplace where someone said you had to be off at least 10 days for the testing but I am not sure if that is for all testing for lyme or for just certain lyme test. Our problem is that once she is off the antibiotics we really backslide and I will not be able to get her to a doctors office or lab to have the blood drawn she just won't be able to do it. She is a completly different person by the time we get to ten days off. She is about 70% when on antibiotics, she has had the usual Quest lyme test including the western blot and only the band 41 showed nothing else. I had wanted to really rule it out and felt like we should use the lab in CA. I did email them with my question but as of yet they have not responded. I just wondered if anyone knows the answer here. Thanks. Kay

I found one of his websites and left a question for him concerning Pandas. I gave him a little run down on it and wondered if he had anything to add to the autoimmune steps. It was under ask the doctor but I think it is just a regular board not sure if he will be answering any of it at all, but if I get info back I will post.

We rec'd copies in the mail with note on them from Dr. C but it was quite some time after we rec'd information from Kathy via email.

We did it because we didn't have high titers on strep. By the time we got around to thinking Pandas many years had passed and blood work only showed high igg on Mycoplasma P. So Cunningham test kind of just gave us information we were looking for to show doctors and helped to show us there was really something happening with my daughter.

I was thinking along the lines of all of us who did breastfeed and have children who are Pandas what was happening with us at the time? Me I had stage 4 gum disease while pregnant (did not know) I was dx with it while she was still fairly young and I did not want to stop breastfeeding so I put off the surgery until she was one, because I still did not want to stop at this point and the dentist felt we should move ahead he gave me antibiotic that he said would not bother her so I could continue to breastfeed, breastfed through all four surgeries which were over a years time. I have posted this elsewhere on the site but will try to make this a short version. When I was in my late teens early twenties I suffered from infections in a tooth that went on for some time, dentist didn't know what was happening, I had rounds and rounds of antibiotics to take infection down, eventually a root canal was done but not for over a years time. I also had step some place in there. When I was 23 or so I became agoraphobic, it was an overnight change for me. Of course at the time I thought I had just flipped and never associated it with any infections which I do now. Right before I became pregnant I went to the dentist (again!) because my teeth had begun to move he insisted I did not have gum disease, he worked on changing my bite etc, eventually changed dentist! But once I became pregnant and morning sickness set in I did not go back till after my daughter was born, so that infection was brewing the whole time. By the time I got pregnant I had gotten past my agoraphobia which was quite severe for about 8 years so I felt good while pregnant and had a slight relapse afterwards but was short-lived thanks to my ND. I see a few of us had different things going on while breastfeeding, are these triggers for our kids?

Completed survey, #12 we put current prophylactic dose we chose effective no relapse continues to be this but wanted to mention this has not brought her to 100% we would say about 70%. She continues to stay at about 70% as long as she is on antibiotic. Does backslide going off.

Breastfed

So nice to hear good news..happy for you all!

Trying to see if there are any connection looking into information on the Epilepsy Foundation board I found this old post. mamaruns Posts: 160 Joined Forum: 10/02/2007 Finally, after over 4 years of having sp's and cp's and not feeling right, my new neuro has diagnosed me with epilepsy. A 24 hour EEG finally showed much spiking in the temporal lobe. I kept a month-long diary of all my symptoms for my doc to read, and he is convinced that I have an autoimmune disorder and/or CFS or fibromyalgia and that the seizures are being caused by this. I'm pretty sure he's right and will be seeing a rheumatologist soon. Is there anyone else here that has seizures caused by an autoimmune condition? Am I the only one? ------------------------- Sudden onset TLE 4/2003; currently trying Keppra; OMMP I don't think this is for everyone, I certainly don't think everyone has epilepsy with Pandas, not all seizures are the really big ones either, not frighened or worried about it, it just seems to really explain exactly what Em has been feeling throughout the years, Dr. K does seem to say there are non-specific GI issues that seem to come with the adolescent variation which she fits well. Just wondered too if anyone out there who have kids with GI issues if any of this sounds familiar. We will be bringing this up to a Dr. as soon as we can to see if there is any connection for us. http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=3&threadid=55939&highlight_key=y&keyword1=abdominal%20epilepsy

I am finding this interesting too Em, as a kid you would have attacks of unexplained stomach pains, no fever, no other symptoms only that you felt you would have to vomit it would never be associated with an illness that we knew of, once you did you felt better (stomach wise)and could usually resume activity. The interesting part of it is that you would be all over the place waiting for it to happen, you had jerky movements and shakes and confusion. It was very weird how you moved around the room when this was happening, it was clearly agitation, I was unable to comfort you at all. At these younger ages you did not have the anxiety or ocd (outwardly anyway, as we know you felt some of these things when younger but the did not interrupt you life) Now older, that part (the vomiting) has seemed to subside but the GI discomfort comes out of no where and really ramps you up. You hold your body in such an odd way, you are very uncomfortable,with stomach and back pain usually one eye is dilated, it last for about an hour and then subsides and you are totally exhausted. Again from the articles I am reading it says this is of course "rare" or "uncommon" well of course it is!!!! I feel it is worth looking in to. I am not seeing it as a separate issue from Pandas, there is too much criteria that fits Pandas for you, I think once again just perhaps just another part of the puzzle.

Thank you for the chart and information, it is very helpful. Kay

Thanks Kara, Lots of good information there. I wondered if Laura might give us some of the information she shared on the OCD Laura's presentation on the difference between typical OCD and PANDAS OCD was also very helpful and a different twise on a parent presentation My daughter continually tells me that it is different and I would like to hear what you have found if that is possible. Also with that being said how does the cbt work if it is based differently, I think this is where we find difficulty. I appreciate you all who went and took notes and are giving updates here, it is wonderful to see all the information.

I'm Giddy right along with you!!! (having a hard time figuring out how to post here, what is wrong with me!!!)

Hi Kay, We added the NAC in mid June. But we also added many other "ingredients" and made other medication changes right after that. She is in the middle of a steroid burst. I can say my kids have taken this before for other stuff and there have been zero side effects zero concerns. Our doctors say it is very benign. My daughter is better, so we know the NAC did not have a negative affect. She 84lbs and takes 600mg 2X a day. Great! thanks for the reply, our ND thought it was a very safe supplement as well.

I hear everything you are saying. My daughter is 19 we are past puberty and we know Pandas started when she was very young to a degree (of course did not recognize any problem then, this is hindsight) Really went into full swing at age 17 after being exposed to confirmed case of strep. I don't know what else to say. I hear everything you are saying, we are as frustrated as you.

Thanks for the info!

I will have to check the Quercetin and see how much it is that she takes, its in with vit c that we get from the nd. Thanks. K

Thank you Nancy, Just ordered some from our ND she said to go ahead and try it. she suggested 600mg 2 x day and if that was ok with her to double that. She also does take quercitin daily so I guess that is helpful as well. Thanks for your input. K

Could anyone who has been using n-acetylcysteine update on how it is working for OCD? I see there were posts back in May where it seemed as if it was helpful. Also one of the studies mentioned said 9 weeks before seeing any changes, is that true for all who have used it? We were guided to it by Dr. Leckman back in April in passing, saying they were having some success with it with trichotillomania and thought it might be helpful for us for OCD, he said for us to run it by our naturopath and honestly it got lost in the back of my mind somewhere as the antibiotics were working well at the time. Antibiotics are still working, we have had a few setbacks but seem to be able to identify more of the OCD that is still hanging around. I have emailed my naturopath to ask her what she thinks and what dose etc. It would be helpful to us if anyone could lets us know what improvements they have seen, at what dose and how long it took to see changes and if the changes continue. Thanks. Kay

Great Job! Thanks for all your hard work!

My daughter does have flares with seasonal allergies, we use a product called Aller-C and quercetin is one of the main ingredients along with vit. c. We know it stops the histimine reaction and thus improves the Pandas flare. They seem to really dry her out though so we do not use every day usually just when needed.

Nice to read the good news. Happy for you and the girls.

Thanks again to all who have posted. Not giving up by any means on the mycoplasma, just trying to see how important it is. I see many who have good results with it treated with the biaxin. We are doing the augmentin right now and I think eventually we will look into the treatment of Mycoplasma P. This quote from tiredmom seems to fit us "I believe the strep brought on the pandas and myco left us with pitands. " This seems to be the case with us. Will keep plugging away. Thanks!

So it is just looking like any type of infection can cause the rage. Ok thanks for all the responses. I am just trying to get my mind wrapped around this. We haven't treated for this yet, high igg. I go back and forth and think at some point we will, just wondered if that was the only thing that caused the rages but you all have helped me see it is not... so I will toss it around some more. thanks.

Also gluten free here for over 25 years. It is so much easier now as someone else as stated. I want for nothing anymore except maybe a grinder on a big old fat grinder roll! I can get a lot of my regular shopping done at Stop and Shop still and I go at least once a week to the health food store and get some of the items that I can't get at S&S. We have found a cake mix for those days you just want something that taste great, you can make cake or cupcakes out of it there is frosting also, ( we don't usually frost) all gluten and dairy free. Cherry Brook kitchen I think it is. There are tons of things now and yes be sure to read labels. We seem to be ok with modified corn starch but not modified food starch and also watch for natural flavorings they can be bad you never know what they are using with that term. We have called companies and they answer you if it is something you really want to use. PM me if you need any additonal information.