Suzan

My dd8 has been on daily zithromax for 12 months. It has varied between 250 mg and 500 mg daily. Before IVIG she did best on 500 mg a day (she's 8 and 75 lbs). After IVIG we have weened her to 250 mg but I can't say she's doing very well. Susan

My 7 yr old restricts food for fear of choking and also loss of taste buds. It is very scary. I was ready to take her to the doctor last year we were so worried but then we got her on daily zithromax and things got better. I give her protein drinks and fix her the items she feels won't choke her (usually scrambled eggs and oatmeal). I tried to push the smoothies with protein powder and fruit but she does not like them (she hates cold things). I know you don't want to take him to the hospital but if you feel he is in danger and needs help, please take him! Good luck to you guys. Susan

Since my dd7 is talking about pulling her hair out recently, I am going to talk to our neurologist about NAC too since I am worried about this for her. We don't go back to see him in the office for a few months though so I guess it depends on how she is doing on when I will reach out to him. Susan

Thanks for letting us know. I've got it on record to watch tomorrow. Susan

Hi. I just wanted to give you a great big cyber hug! I am right there with you. I am confused and headed downwards too. I just gave up wine to start my diet and I am really suffering from it. Just earlier today I was saying I didn't think I could make it without the wine!! My 8 yr old is about to break me and I'm getting confused about whether it's PANDAS or Celiac or both. I don't know if I'm making the right decisions. I feel like I won't survive it all. So if it helps, you are not alone. I feel your pain and frustration. I am sorry! susan

Hi, I sent you a PM with our info...

That's what my dd was like, you could not wake her. Sometimes she would lash out and fight you in her sleep if you tried to wake her up. Whatever she did, she would not remember. The program we used gave us an alarm pad that she would sleep on and when she urinated on it, the alarm would sound. This is when the work started! Her job was to wake up, turn off the alarm, go to the bathroom and splash water on her face, use the bathroom, dry the alarm and change the casing and go back to sleep. I was to keep a log of when this happened and how much she was able to wake up and how much she pee'd. At first, she would not wake up. That alarm would be going off and she was dead asleep. I'd have to shake her and she'd finally get up and start to fight me. For a long time, she could not even remember any of what happened in the night and it would happen 2-4 times a night! The goal was to get her to wake totally up so that she could start a REM cycle over and retrain herself to be able to come out of sleep enough for her brain to tell her that she had to go. Over time, this actually worked. It took 6 months. It was hard for me to understand why I would want to wake up this kid who has trouble sleeping. And at times we almost gave up because it was so much parent participation. But eventually, her accidents got smaller and less frequent and then she started waking herself up before the accident. It's been 2 years now and she's been accident free except for one time when she had strep. Susan

http://www.nowfoods.com/Products/ProductsbySku/M002788.htm Anyone heard of this before? It's new to me. Wondering if it would be helpful for the pandas kids who don't mount much immune response. Susan

Thaks to all for your suggestions and empathy!!! We have tried just about everything possible but two suggestions here I have not done is a TV in their room or sleeping with my pillow/blanket. I will try the pillow tonight! Trust me, I don't think anything funny any more so that is a great suggestion mkur. I have always been a "no tv in the bedroom" kind of person, but hey, I am more than willing to change if it might help. dd8 was sleeping in her room fine for a while but then we switched her to a new bed and it "freaks her out" now. She can't tell me why. I'd change her bed again but I have no idea what would help. Her last bed is not really an option to bring back and I don't think it would help anyway. Susan

Hi, I posted my sleep problems today before I saw your post! As you can see, if you saw my Sleep Fear post that we have the same problem. I have tried so many things over the years that fail or work and then fail. The only thing that we officially addressed was that when younger, she had sleep apnea and that was taken care of with her tonsils and adenoids coming out when she was 5. Then, when she was 6.5 and still wetting the bed, she went through a program that indicated she was wetting the bed because she was not getting proper sleep REM cycle. She went from awake to dead asleep and stayed there so her body was not waking her up to tell her she had to go to the bathroom. Anyway, other than that, we have not been evaluated for any other sleep issues. I do hear your frustrations though and I can totally feel for your situation! Susan

I love it! Enjoy!

Our bedtime routine is causing me a lot of anxiety and stress. I have no where else to talk about this since the average person not dealing with a pandas kid would think I'm nuts for the stuff I put up with or try around bedtime and sleep. I know you guys will understand. dd8 is afraid to go to sleep, afraid to sleep alone and always wants to sleep in my bed. She's almost 9 now and getting closer to being as big as me. I want to sleep by myself in my own bed. It's the only time I have to myself, even when she is in the same room as me. Both girls have their own mattresses on the floor where they are free to sleep in any time they want. So our routine goes like this: 7:45 pm, settle down in front of the TV, melatonin, benadryl, quiet "calming" TV shows 8:15 pm, usually they are both asleep now on the couch 8:45 pm, I bring them upstairs, dd7 in her bedroom and dd8 in my room on the floor and I set in bed and read or surf the net because if dd8 wakes up and I'm not there she will freak out. Sometime in the night dd7 will come in my room and get in her bed there and sleep the rest of the night. After years of trying to figure out how to get us all a good night's sleep, this is what has worked the best. Neither one can get in their own beds and fall asleep. They both need the TV although I think with dd7, if I worked on her I could get her to do it but with dd8 and her issues ,it just doesn't work since I have no one to be with dd8 while I'm with dd7. dd8 now has gotten so if she's not asleep by the time I turn off the light, she is afraid and wants to sleep in my bed. It's getting worse so now she wakes up with the "click" when I turn off the light and starts with her whining and crying that she is afraid. So then she ends up coming into bed and I'm mad. I know there is no use fighting, forcing or negotiating at this time. It just does not work. So I spend the whole night getting them to sleep and then she ends up in my bed anyway. I want my evenings back somehow. Part of my problem is I just don't get it. I don't understand what she is feeling and it seems so unreasonable. It's hard for me to really get that this is really a problem for her and I'm not just a chump of a mother who can't set boundries or rules or limits and I'm letting the kids control the house. I would like to have a grown up relationship sometime but I can't imagine finding the right person who could come into all of this and understand pandas. Sorry this got so long. Thanks for reading if you got this far. Susan

This helps me remember to vote so I'm bumping again.

I've been voting every day too.

For me, if you have time to cook, simple meals with protein, veggie, fruit and rice or potato's works great. The bread is the hardest to replace. I buy expensive premade bread from the healthfood store but I hear that if you buy a breadmaker, you can make some really good gf bread. This is the celiac forum and info board I like that has many great resources http://www.celiac.com/gluten-free/index.php?http://www.glutenfreeforum.com/ http://www.celiac.com/pages/Advertising.html Good luck! I think GF is a great eating plan for kids with pandas regardless of whether the are officially intolerant to it. Susan

The type we have has the following per capsule and she was on 3 a day. Do you see anything there that could cause trouble? GABA 100 mg L-Glycine 50 mg Inositol 650 mg Taurine 50 mg Today she told me she was feeling like pulling out her hair but I have not seen her do it. I have seen a few things that looked like the start of a seizure but they have not progressed. My guess is she's having very short ones that are not fully appearing before they are gone. She is still difficult. Susan

Thank you for the update and it is so wonderful to hear such good news.

She had been on it for about 3 weeks going from 1 cap a day up to 3 caps a day. Susan

I don't really know how this relates to PANDAS or if it does at all but I figured I'd post in case it's helpful for anyone or if anyone has any thoughts or experiences. dd7 has a history of seizures, the staring kind that last 10 sec. or so. Long story short, she's been off all meds and seizure free for a year after going gluten free. Fast forward to earlier this week, she had a seizure. I'm very worried of course and I think it's because I've let my guard down on the gluten free diet and have not been checking every item that she eats at restaurantes, etc. so I know she's gotten some gluten. She used to get sick within minutes of eating it but now I guess she's healed and so she is reacting differently. She's been super angry and unreasonable and difficult, threw a lunch box at me, refuses to comply, stuff like that. It's hard to tell what could be PANDAS or what is the gluten. Right now I'm thinking it's the gluten but maybe too it was the GABA Plus. Our neurologist did decide to take her off the GABA Plus in case that was causing them to get triggered and I am to keep a log if I see any more of what she was eating or doing or her state of mind, etc. before the seizure. Now it's just a waiting game to see how she improves as I tighten her diet back up. She may still be on the IVIG track for her OCD although the OCD seems to be calmed down right now, at least the hoarding and fear of choking. Susan

Bump

From my experience, most allergists say that the blood testing is not accurate and the skin test is what you need to go by. My girls, who both hate needles, did very well with the skin test, although dd7 did cry a lot when it started itching. Good luck and keep us posted!

Thanks for the reminder. I can't believe I forgot to vote over the weekend

I have found that I can find something to eat almost anywhere, even at an Italian food restaurant although that gets much harder. Now I am not vegetarian and I know that makes it harder. My 8 yr old had two weeks as a gluten free vegetarian and it is hard to find things to eat at restaurants. But she had salads and rice and potatoes, side items and she seemed to do OK. I was relieved when she decided to start eating meat again since it made things easier on me but I know you can do it. Hang in there and good luck. I'm sorry you are experiencing these feelings with your family. Susan PS... I can't wait to try PF Chang's GF menu!

My situation is different as my girls are 14 months apart in age and they both got pandas I now believe at a very early age so they have always shown strange behavior. That said, I think it is normal in the early stages or with mild episodes to question whether it is normal behavior or pandas. I do it all the time with my two girls and question the path I am taking, even though I know I'm on the right path. I am sorry that you find yourself in this situation with both your daughters now. I am glad it is caught early and hope it never develops into anything serious. I agree, it is heard breaking. Big hugs to you! Susan