Suzan

Us too. That is my dd7. She is much improved with ibuprofen. She's been having tummy trouble so I limit it and I can tell the difference when she does not have it. Glad it's working, I know that gives you a much needed break. Susan

I should have written other but what dosage did you get lower than 1g? We got .4 gm and next we go to something like .75 I think. This is not the protocol from the pandas specialists though..... We are not cured after our .4 gm dose but she is on a reduced abx dose now and holding her own, not perfect but I'd say 50% improved. Susan

I can't vote since our first IVIG was less than 1 gm. I guess you are probably mostly interested in those who get higher doses right? Susan

My 8 yr old dd had pimple's with huge pustule's on her legs/inner thighs. They were very painful, itchy and left purple blotches on her legs. The doc's diagnosed it with molluscum. I never felt comfortable with that diagnosis and felt like it might be related to celiac (DH rash) or something else. A few months into the worst of it, she was diagnosed with vaginal strep and eczema. Within 1 month on abx, her skin completely cleared up and has never returned. Good to look into it further. For DH (celiac related rash) they culture the skin next to the eruption for IgA. We decided not to do this since dd was going to go gluten free anyway. If your ds gets more, I would research this rash as well just in case. Susan

OMG, it's so true. What a horrible, funny story! You do such a good job with Meg and helping her help herself! This made me think of the conversation dd8 and I had this morning after her really bad night last night. Yesterday she had reorganized her mat in my room so it was in a different direction. I think that is what set her off. She said " I guess I don't do so well after changing my bedtime routine". DUH, you think? She has not slept in her own room since we switched out her bed from her loft bed to a regular bed (at her request). So we moved her mat back to it's regular place and I got her good and asleep downstairs before moving her up tonight and so far so good. It opened some good conversation about it though. I know when she is ready, we can start moving her back to her own room. It's got to be in her own time or it won't work. We just find ways that we can all sleep well and that is the most important thing to us all.... Enough good sleep! Susan

Tonight is worse than usual, she is crying, close to hysterical, that she is scared and can't sleep. I feel like she felt me writing about her sleep issues and that stirred her up (like when she was a baby I could not think about her when she was asleep or she would wake up). She is on the floor next to my bed with a blanket and a pillow. Too scared to sleep on her mattress 5 feet away. Susan

I believe this is a symptom of pandas as I see it wax and wane in my dd8. She too can sleep over at other's houses (at times) but has a lot of trouble sleeping in her own room at home. I have a mattress on the floor of my room so she can come and go as she needs to. Right now, in a difficult time, she starts out there. At other times, she will try to start in her own room. We have not even tried in a while. I hope she can gain the confidence to sleep alone so it worries me that you are still having this trouble, but I will love and support her and hope for the best. I am glad to hear that she can rate how she is doing and that the abx are mostly working. Susan

Going GF changed our lives for the better! dd8 (tested gluten intolerant), much less angry, more calm, cleared her skin 100% from eczema, itchy dry skin dd7 (tested gluten intolerant), seizures went away, started growing, baby teeth started to fall out, hair started to grow, played more, gut issues went away, malabsorption issues got better, got her off most of her supplements (and she was on A LOT). me (I'm allergic to wheat), itchy skin cleared up, strange periodic dermatitis cleared up I think it's worth a try. Sounds like you are aware of your body and you will know it it's worth it. It is hard to do GF and DF but you can do it! Susan

Us too.....

For us, I can tell a big difference with my dd's when their allergies are high. I don't have any studies or proof in relation to pandas though. My dd8 is going through allergy shots to calm her horrible allergies. We hope that long term, it will be helpful to her so she won't get sick as much and won't feel as badly, hopefully won't trigger pandas. So far, she is tolerating the allergy shots very well. We were not sure about that in the beginning. Susan

Melanie, good luck with it all. Trust your heart, you will do the right things for Danny. Susan

Vickie, thanks for that, it makes it so easy to vote. I appreciate everything you are doing. Susan

White noise, yes! Very helpful! Dimming lights, quiet calm voices, low volume on TV (if the TV is on). I came home late tonight, babysitter had the TV on loud, loud voices, lights on. I had them asleep within 5 minutes after calming their environment. After the melatonin of course but with all that other stuff going on, the melatonin would not help. Susan

Melatonin (I give 2.5 mg nightly) Epsom Salt Baths (1-2 cups in a bath as often as I can get baths in. Not daily any more but I wish we did) L-Theanine (amino acid, very calming) Attend and Extress by Vaxa (I found this very calming and helpful for my dd8) Benadryl (works for some but not all, some it jazzes up) Good luck! Susan

Yes, I think you can be thankful he is doing as well as he is but at the same time, keep trying to get him better. You can tell he is not well and so you keep searching for answers and help. Until you feel it is all normal development stuff, keep at it. Those are my thoughts anyway. My dd's are not non-functional as I know they could be some day. But they do not function as normal children. Keep your Mommy instincts strong and honor them. You are your child's best advocate! I relied on the can kimase test to reinforce what I already knew so it was helpful to me, plus my pedi agreed to treat with antibiotics if the test came back in the pandas range. That was back when it was $200 but at that time I was desperate so I may have paid more. Susan

Welllllll, today is day 3 of the lowered abx and last night she had intrusive scary thoughts and today she is whining and needy. Maybe the IVIG helped so it's not getting as bad as fast with the reduced abx but I'm assuming we should move forward with the IVIG. Susan

OMG, it is a horrible thing. My heart goes out to her. She's been through so much already. Susan

Vickie, thanks for all you are doing on this project! I really hope June is it for us. I just sent an email to friends and family with the new link that will hopefully load more easily since most say they had trouble too. Susan

My dd finished her low dose IVIG on April 28th (.4gm/kg one day dose). She did not tolorate reduction of her abx after and has not been doing well since with increased OCD and emotional liability and anger and some involuntary movements. She got sick week before last with strange symptoms. The doc said candida and acid reflux. She went on antacid and diflucan. This week she is doing much better. I started reducing her abx yesterday and so far she is holding her own (500 mg zith down to 250 mg daily). We have minor issues compared to the recent past and I usually notice increased pandas behavior within 1 day of reducing her abx, atlthough I know this is still a little early with the change. She is in line for another IVIG, just waiting to hear back from the neurologist. He does not do the pandas dose but starts low and works his way up. Although she is doing much better, I am assuming I should continue with the IVIG to continue her healing. I know there has not been much success with low dose. Although I am afraid the IVIG will stir things up and maybe we should just wait and see how it goes. I do not believe this low dose "cured" her though so if we don't move on with the next round, I don't know what to expect regarding her abx and future infections. Any thoughts or comments on this? Thanks! Susan

Grace, welcome and I am sorry you are going through this with your children. Please stay and learn so much from this forum. The parents here have been so helpful to me. Diana, thank you for speaking out and for being there for our children. Susan

Just voted for those 10. We are looking good on this first day. Will Warriors vote for us this month for our votes last month? Susan

We have not seen it specifically to cats either since dd8 and I are very allergic and stay away if at all possible. We do see an increase of symptoms with allergic reactions to dust and seasonal allergies so I would assume we would see it with cats as well. Susan

Oh shoot, I left a comment since I didn't see this yet today.....

I have read it and I was thinking about it last night when I realized I was wanting to fix the problem as I would with "normal" children. I just knew it would not work. I do always forget your suggestion of repeating back. I am going to try really hard to remember that. This morning, she woke up, came downstairs and made her own toast AND put everything away. She just asked for help spreading the butter. Now wouldn't it be wonderful if she could do that every morning?! Susan

Thanks everyone, I can't tell you how much it helps in a weird way to know that this is not unusual. I am crying here thinking of you all dealing with the same food issues. DD7 has always had food issues with PANDAS (food restriction, picky, grazes, likes it one time and decides she doesn't, things have to taste the same each time) and that was easier to deal with, she's not as emotionally engaging as dd8 and I could cater to her more easily when the other was eating and happy with whatever I gave hre. She actually used to tell everyone she loved my cooking. Some really good suggestions though that I will try to see if it helps. Before I got up this morning I was thinking about my day and how it relates to food. I have to start even before they wake up with making their lunches for school and it just goes on from there. Only good thing about school lunches is I'm not around to hear about it if they don't like what's in there and my options are WAY down lately. No sandwiches or anything in a thermos and no cheese sticks any more and they are glute free. Susan