Suzan

Hi, I haven't wrapped my brain around all this but wanted to say that my dd7 had very bad eczema around the time of her very bad episode in January. Before that she had horrible skin issues that cleared up after she went gluten free. I was surprised when she got eczema so badly and it makes more sense to think maybe it was related to her V. Strep. Susan

I know now that the girls have PANDAS and that the first treatment is antibiotics and that many people say they see a nice improvement in 4-5 days but it still is really amazing. I started them on 500 mg of zith for 10 days (then I'll reduce to 250 mg and see how they do, per our doc) and it's been 5 days I think. I can tell a huge difference in dd6 and it's amazing to me to watch it happen. Last night she ate all her chicken, green beans and asparagus, a bunch of carbs and popcicle and then more carbs. She was still saying she was hungry as she was going to sleep. Tonight was more of the same. This from the girl who 2 months ago I was worried she was failure to thrive. She has a sassy, annoyed, I-know-everything attitude that inside tickles me to death because she's not acting like a baby and asking to be picked up or carried or grabbing on me or sticking her feet in my face. DD7 is not complaining of pain any more and seems to be falling much less. She is still pretty emotional and reactionary but it's pretty quick to resolve. She's still complaining of wetness which is the chief complaint of Vag. Strep at our house so that is confusing. One interesting thing, she seems more beautiful than ever to me the past few days. I wonder if it's because she's feeling better so she's happier? Anyway, I needed to share this tonight and figured this would be the best place with people who understand. Thanks for reading! Susan

Our Ped. just told us 3 packets for my dd who is 6.5 yrs old and 42 lbs. I was only giving her one so I upped it to 2 for a while. I'm thinking about trying the chocolate flavor next. Susan

That's what we use too! DD6 loves them. I give her one in the am and one in the pm. My 7 yr old dd hates them. She drinks 2 tsp of Nordic Naturals Orange flavored cod liver oil. I make some herbal tea and mix it in with it and she chokes it down. Strangely, she can swallow pills but would rather take that concoction than swallow those big oil pills. Susan

Ooooooh, this looks super great! I hope my kids like it. I found a buy one get one free coupon on the internet. http://www.goodbelly.com/coupons

Yeah, Sam, you are probably right about the dairy and I do want to be sure I can determine the cause of any symptoms she's having. Unfortunately she's also sensitive to soy. It seems to give her a huge belly and some mood changes too. Thanks! Susan

Thanks for the suggestions! Our doctor is a Dan! doctor and he knew of PANDAS and thought it could be possible that the girls had it. I told him about Dr. Cunningham's new test and he agreed to treat however was recommended based on a positive test result. I think we basically got pretty lucky there. You can see he's still having some issues with the concept so I just hope he'll continue with the zith if it works for us!! susan

Thanks Colleen, I think this is good advice. I do think they have strep somewhere in their bodies... They continue to get signs of Vag. Strep and they continue to have rheumatic type symptoms and PANDAS symptoms. Their last positive strep culture was about a month ago. Our doc treated with 5 days of zith at that time. I think I can go ahead and make this change since he gave us enough to do this and talk to him about what I see in a month or two. susan

I just ran across this post from March. I have been wondering about hand writing since dd6's hand writing has gotten so bad. If she's in a good state, she can have really nice printing (letter formation and spacing) for about 2 lines then it starts to fall apart so fast until the end is all backwards or misformed letters.... Should this hopefully improve on antibiotics or is intervention by an OT recommended for these set backs due to PANDAS? Susan

Hi everyone and thank you for all your support over the past 2 or so months since we learned about PANDAS. Our Ped. gave us a prescription for zith today. He agreed to treat my girls but is having a hard time with the yeast issue with the antibiotics. He wants us to start on 125mg daily for 1 week and see how it goes. Then if we need to we can up it to 250 mg for the next 5 weeks. After that, we are to go to 125mg (250mg if necessary) 1x a week. Any advice, things to look for, etc. when starting this protocol? Should I be worried about cutting back in 6 weeks? We take Caprylic Acid and probiotics for yeast issues. My kids won't drink Kefir. DD7 is allergic to dairy but I'm thinking of bringing in yogurt. Just worried about all the yeast and gut issues. Anyway, I am happy we have a diagnosis and some direction although still worried about the future, future strep exposure or infection, future damage to their brain, etc. PS... Is there a genetic factor? Is it unusual to have both girls with it? My 6 yr old is on the lower range of CamKinase at 118% and dd7 is mid range at 143%. Susan

Hi Lacy. We went to Carillion Labs, the lab that does the tests for our local hospital. They charged me a fee to spin off the serum but it was not any trouble to bring in the box from Dr. C. I worried the whole time we waited for the results that it would come back normal and then where would I be! But they came back positive and now we are getting some treatment. It's a start. Good luck to you! Susan

Oh wow, how awful. I can totally imagine what you guys were going through. I am sooooo sorry! Have you told your Ped yet? I hope he/she is outraged by this...... How far is Richmond, VA from MD? Have you looked into seeing Dr. Latimer? Susan

We see a Dan! doc very close to there. We like the physicians assistant, Dr. Chris Jenny but I hear everyone there is great. They have 2 offices. Here's the website. http://www.carolinafamilyhealthcare.com/

Hi, have you seen a neurologist for them? My dd had them but she was having many, many a day. She was on medication and supressed them for a year. She just had a normal EEG and is slowly coming off her medication. Depending on what type of seizure they are, the possibility of outgrowing them increases if they are supressed for 2 or so years. Good luck! Susan

I had never heard of it before. Sounds great!

I think so. I'm still so new to all of this, but I understand that any episode now would be treated with antibiotics. After time, I'm told the antibiotics would stop working or not work as well. Then I guess IVIG would be the thing to try. I'm going to talk to our Ped. about IVIG this week. I don't know if he knows anything about it but it's a start. Susan

Hi, from what I've been told, once you have PANDAS you can react to other bacterial or viral infections in the same way. I would think either your son has strep and it just didn't show up on the test or he's having a reaction to something else. How long did they culture the swab? I've heard it should be 72 hours which may be longer than some dr's offices do it. My daughter's usually get strep in other areas of their body other than their throat. Our doc wrote on our last negative throat culture that it didn't mean she doesn't have strep. Hugs to you!

So glad she is doing so well! My 7 yr old got her tonsils ut when she was 5. She had a marked improvement on her behavoir and how often she was sick. I wonder about my 6 yr old and whether she should have hers out but she does not seem to have trouble with strep in her throat! I'll be very interested to hear how your dd does! Susan

Thanks, I was worried about this since she didn't tell me about that, but she called tonight and totally cleared up my confusion. I was not adding 100 to the percentage to look at the chart. At any rate, both my girls now are official and do have PANDAS. I feel a mixture of relief and worry. At least now I have a direction to go in and I have some people who will try to help. Susan

We've received our test results back and I'm confused. I've left Dr. C a message and hope to hear back. Does anyone know who's gotten your results back..... If you have any Cam Kinase does that mean PANDAS? Or does it need to be over the Positive serum control to be definate? My girls both had elevated test results but low % Cam Kinase so now I'm confused. They were in a slight episode at the dime of the draw with V. strep (dd6) verified a few days later but I would not consider it a full blown episode. It was caught quickly and treated (after the blood draw) with zith. I was hoping for any feedback in the mean time before I hear from her if anyone has any thoughts. Thanks, Susan

Wow, it never occured to me that this behavior would be OCD! My kids do the same thing. I have to wipe them and they are very concerned about anything being left or feeling wet or having their underwear wet. I've always wondered "what the...???" They also use so much toilet paper!! Susan

My adhd dd has been greatly helped using these products: http://www.vaxa.com/4001p.cfm She does not have tourettes or tics but probably has PANDAS. She is also much improved on a gluten free/dairy free diet and I give her magnesium and L-Theanine for calming. Good luck! Susan

My dd starts to have trouble wetting the bed when she has vag. strep. Has she been swabbed in this area? Other than that I don't have any experience but wanted to say HUGS! Susan

I should have my girls results back in 1-2 weeks. Our doc has agreed to treat based on what the results show. Good luck to you with the doc who is considering it. Can you travel to see any of the docs who will treat based on the results? I don't know where you live. Susan

I have one dd who is allergic to dairy and one who is not. However the one who is not does better when she does not eat dairy so I think she is intolerant to it. At any rate, they both as babies would spit up entire bottles of formula. I got so I was afraid to feed them and you could not feed them without having change of clothing ready, stuff to clean up, etc. I took them off dairy and would only feed goats milk (after we stopped formula and while on formula I used something specific but I can't remember what and also used Dr. Brown's bottles to reduce gas). Things were much better on goats milk. There is a blood test you can do to see if they are allergic to common allergens but it does not test for intolerances. Now at age 7, if my dd eats dairy, her stomach bloats up and she gets very emotional. Susan