Suzan

This topic freaks me out. dd 7 is current on her vaccines. dd6 is not. She still needs the second chicken pox vaccine and the mumps. But since you can't get just the mumps, she's due the MMR. I've seen dd7 have tourette like symptoms while on Tamiflu. There is no way I want my kids to have this flu shot. Our ped is not one to allow for medical exemptions. Will the autoimmune angle keep them from being on the manditory list for the flu shot? Susan

Well, I guess it's no surprise that the new immunologist did not know about PANDAS, didn't know what it was and was VERY suspect of the claim that it would affect the brain since "not much at all will cross the blood brain barrier" and he was not aware of how behavior and other neurological issues could be created from an autoimmune disease (that worries me though). He did not receive any of the articles I sent earlier for his review. Oh well. But, the good news is that he is testing dd7 for IgA, IgM, IgG (and subclasses), some rheumatic test and a few other immune related tests (Shaesmom, he's doing the 14 strep related tests but I can't remember what it's called). He also is going to do a full allergy workup on her. I feel like he is doing everything I wanted him to do since I already know she has PANDAS I don't really need him to believe it since I don't need treatement from him (since I'm not trying to convince him we need IVIG right now). I should have the immune test results back in 2 weeks at our next appt. He tried to convince me that dd was probably not allergic to dairy because "most kids grow out of it by age 5 or 6 so true dairy allergies are rare" and also said that "wheat allergy is very rare, did you know that?" And that if diagnosed through a blood test, it was highly likely that the allergy test was false. But I know for a fact that I can't eat any spec of wheat or I get itchy so badly and have a horrible histimine reaction and I had a positive wheat allergy test. (just a side note since I want to vent about him)....But, those were the only things that were annoying, the know it all attitude before really finding out what is going on. Anyway, all in all, I feel hopeful that we will either figure something out or rule some things out. But, if I really need a doc to listen to us regarding her neurological issues, maybe I'll have to see a ped neurologist.

Charlotte, NC Chris Jenny PA - Dan! doctor, PANDAS knowledge, recently educated on Dr. Cunningham's tests and research. Agreed to zith treatment w/ positive Dr. C's test.

Sam, was this yesterday and today? I am thinking of you and Shae. I hope all is well. I will be away this weekend to next so I may not see your update if you post one when you get settled. Susan

Thanks! If the one we are seeing on the 27th turns out to be a dud, I will get this name from you for sure! Thanks! Susan

Wow, really amazing, scary, wonderful. I am so glad all is well and you are home. Please keep us posted. Susan

This makes me so sad. My dd (7) is like this too. She has the funny feeling in her stomach. She says it tingles and it doesn't feel good and she can't explain it well. She worries and worries about stuff a 7 yr old should not worry about..... I can't afford IVIG. I wonder if it will ever be covered, before she's too old. Maybe someday I'll find a way to be able to get the money. HUGS! Susan

Please let me know how it goes. I will be thinking of you guys. I can only imagine how nervous you are. I hope your insurance issues work out. How can they say it was pre-existing? Susan

Oh that is scary, luckily she only is concerned about where they are, could they come, why do they exist, can they kill her..... my other daughter did that once as a younger child (3 yrs maybe?) where she thought the bugs were on her and I was totally freaked out. I guess it's time for me to learn more about OCD and how to handle these episodes since now I'm understanding what they are more about now. Susan Susan

She has not had any other testing done recently. I can't remember if we've ever done vit. D.....but I take her on the 27th to an immunologist. I'll see if he can do vit D levels. If not, I know her Ped will do it. I am hoping an immune workup will be helpful. We see our ped neurologist (first time for dd7) but that is not until December! Thank you for your reply!!

As usual, thanks for the support, suggestions and a place to just come and tell others who understand about this crazy stuff. DD6 is afraid right now of bugs since her sister freaked her out about black widows last night. She says that she feels like the world is covered in bugs and no matter where she goes there are going to be scary spiders, crickets, any kind of bug coming to get her. She was really out of control about it this morning. I gave her a little bit of melatonin, some magnesium CALM and some L-Theanine (all calming stuff I give dd7 for her hyperactivity out of control stuff). She is a lot better now and has stopped talking about bugs and is playing pretty well with her sister. I have her on 1/2 dose of antibiotic. I'm thinking of upping it back to the 250 mg while she's getting over this cold. I know it won't help her with the virus but is it believed that zith could help with brain protection I think, right? Why am I having trouble grasping all this? This is so difficult to see them going through this and knowing why. Susan

Believe me, I will try it! We did discuss why that might be happening, related to the PANDAS but she didn't believe me. This morning she's afraid but she's hearing noises that I hear too so no voices yet. Susan

Thanks T. Mom.... Is 250mg considered full dose for an almost 8 yr old weighing 65 or so lbs? I thought it was but maybe not? Thanks! Susan

Thanks Lisa, I'm hoping the antibiotics will help prevent damage to her brain, but I don't know how that works with viruses. Thanks for your post, it is so frusterating and upsetting... I am so worried about when school starts. Susan

DD7 has a little man inside her head that controls her body during her bad PANDAS episodes. But this morning, she heard a man in our house upstairs say "Come on, let's go" in a mean voice. It terrified her and now she won't go upstairs by herself again (this was a big problem with her until about 1 1/2 years ago). She's talked about it so much this morning that now dd6 won't go upstairs either. They had me search the whole place for the man (or men) hiding in the house waiting to rob us. That said, dd7 is doing better than she was last week so this surprised me this morning. DD6 on the other hand, is sick now with a cold and she's crying for her "boyfriend" Timmy who she has not seen in 2 years and always starts crying about when she's not well. She also is crying because she wants to "go home", and we are home. Susan

Really great news! I love to hear about this for his age and being so aware of what is going on and how much he's improving. Funny about the gum. That was how I realized my girls were doing so much better a few years ago after all of our OT for sensory issues. They used to chew so much gum and I realized they didn't need as much to cope every day. Susan

She did a great job and she has helped us so much too!!

We saw this doctor in Florida for a while and I really like his approach. We were not seeing him for PANDAS at the time however. But I like these articles he has about boosting the immune system. I thought I would pass them along. Also, I would recommend him as a resource if anyone is looking for a doctor in Florida. http://wholisticpeds.com/default.asp?cid=9...;n1=1&n2=39 http://www.wholisticpeds.com/uploads/on%20...f%20illness.pdf

I read somewhere, (sorry don't remember where) that low IgA can cause false negatives on celiacs test. Sam, our gluten free experience has been amazing. It was hard at first but now it's second nature and we all feel better for it! It is true, low IgA does mess with the results. My dd had a low normal IgA result and I've always wondered if it was low enough to give us a false negative. Even without a low IgA, celiac tests are very commonly false negative especially in children. Susan

We have an appointment for DD7 in a couple of weeks, just someone I found on the internet so I thought I'd see if anyone in Charlotte has seen an immunologist that is recommended. So far she's only seen our Dan! Ped. We have an appt with the ped. neurologist in December but I really think she needs an immune workup quick. Thanks. Susan

Hi! Here is their website.... http://www.carolinafamilyhealthcare.com/ We see Dr. Chris Jenny. He's the physicans assistant but is working really well with us. He has all the info on Dr. Cunningham's research testing for PANDAS and is willing to treat based on those results. Good luck and please let me know if I can help in any way. Susan

We started 250 mg of zith about 2 weeks ago now I think. Things were going along pretty well but, dd7 has caught a cold. It's settled in her chest and she is producing yellow to green mucus. She's a becomming wreck again too. Very emotional, touch sensitive and inappropriate laughter, mocking.... Any suggestions? Do we just keep on with the zith and wait to see what happens? I was supposed to reduce her to 125 mg today. If her chest does not get better soon I'll have to take her back into the doc so he can have a listen. I am surprised at the infection even on the antibiotic. Thanks..... Susan

Hi, we are new to all this too and have only started our antibiotic treatment 2 weeks ago. I did want to ask you about your celiac panel though. Which test as abnormal? Was it the anti-gladian IgG results? If so, this does mean gluten intolerant at the very least. Celiac tests have a very common false negative rate, especially in children. If it was the IgG test that was positive, I have a wonderful presentation that helped us regarding non-celiac gluten intolerance. I can send it to you if you are interested. We are a gluten free household. My 6 yr old is the one who had the positive IgG test and she now can't eat even a speck of gluten without getting sick. She is much improved on this diet. My 7 yr old had negative test all around but I took her off gluten anyway and she was also much improved (her bad, itchy, rashy, eczema skin totally cleared up and her behavior got much better). I am allergic to wheat so I don't eat it either which makes things much easier. Susan

Hello and HUGS! We use Vaxa's Attend and Extress (during the school year I also use the Memorin so we buy the Strategy Pac). We don't use it specifically for OCD but it seems to really help my 7 yr old get through her PANDAS epsiodes. It helps calm her hyperactivity and helps control her crazy brain and really helps with her over all calmness and behavior. I thought I would mention it, in case it seems like something you would like to try. Otherwise, my other dd is using many of the supplements you've already mentioned. Good luck to you! Susan

Wow, sorry about the additional condition, but that is great that you have her diagnosed. I am currently looking for an immuniologist to see if I can get some additional tests for my daughters who have never had an immune workup except for their Celiac test and Dr. Cunningham's test. What are your daughters symptoms that lead the immuinologist to think it might be CVID? That first test you mention sounds crucial for us! Big HUGS. Susan