Suzan

I don't know if this will be of help since my daughter is only 7 and she regresses pretty far.... but she has PANDAS and in her episodes, she will regress to a thumb sucker, baby talker or non-verbal kid. She will refuse to walk, want to be held all the time and cry for her bottle. So far, it always turns out she has strep, BUT, she does not get strep in her throat. Luckily we had a doc who knew that girls could get strep in the vagina and this is how we found out about PANDAS. So for your son, maybe he has strep lurking elsewhere in his body? Have you had his ASO and AntiDNASE titers tested? I hardly know why I ask since my dd's titers are always normal even after documented strep. I know how scary it can be. My heart goes out to your family! Susan

My 7 yr old tends towards hoarding too. Lots of rocks for us but really everything. For some reason this also reminded me that my dd's used to lay out blankets all over the floor so that no floor could be seen. They would do this for hours and hours, day after day. Susan

dd8's IVIG went very well today. She actually enjoyed the experience, got to make jewlelry, play the wii, watch movies and she didn't have any troubles. But now that we are home, she does not feel well. Headache, pain in her legs, fingers and hands, a stomachache and trouble knowing what to eat or what she wants. I gave her benadryl and ibuprofen. Her sister is having a sleep over at a friends so I can just be with her. Right now she is going to sit on the porch with her doll and talk to a neighbor because she is really bored. She is not used to not being so active. IVIG was low dose, one day. I know I think it should have been more but for our first experience I'm kind of glad now that this is it. Fingers are crossed that everything will be OK. Susan

I did decide I better call so while we were getting set up, I called the insurance company. They confirmed that I did not need pre-approval. Still, I find it hard to believe but they said 80% covered.

I have UnitedHealthCare. I'll be sure to report back on whether it goes through without a hitch. I'm still worried about it. We leave in an hour for our first treatment! Susan

I have the opposite issue. My insurance company says I don't need preauthorization. I should be jumping for joy but I just feel like it's too good to be true but our plan does say IVIG covered for PANDAS. Have you tried to call the doc's office to see what they have heard? My doc's office didn't call to tell me everything was set. I had to call them and ask. Susan

That is awesome. I hope he will continue to do that with you guys. My dd writes a lot of stuff that she can't say too. It's usually her feelings. She also likes to use puppets. Then it's her voice but it's not really her saying it.

Sounds sort of like what happens to my dd right before she gets sick recently. Do you think he could be coming down with something? I hope he is doing better today. Susan

Thanks Melanie, that helps. I still have not heard if insurance has approved but we are gearing up for the experience!

Oh it's OK, it's something I should know and actually, my dd used to get pink eye all the time when she was younger and so now I'm wondering if it was strep related then too. She said pink eye is going around in her class but I know strep is going around in our area as well. I'll ask at her school to see if anyone has had both. Susan

I hope this isnt getting personal(LOL).Should I be tested for Herpes? To see if he was exposed to it at birth.I dont think I have herpes ,I think I would know .HUmmmmm. how is Is herpes 6 transmitted .Is it just a blood test?? Melanie I freaked a little when I found out dd had herpes. But actually, almost everyone gets it, there are different forms of it and most people get it, probably don't even know and process it properly and it goes away. I can't remember all I read now but it is transmitted like every other virus. Susan

Oh you've got to be kidding me?!! That would explain a few things anyway! I HATE STREP!

Our low dose, 1 day IVIG is on Wednesday this week. DD8 is showing signs of possible pink eye. She also has hightened separation anxiety and irrational fears, falling down more, chest pain, headaches, the usual pandas stuff. But the pink eye got me wondering what might derail the IVIG as far as if she gets sick? Is there a rule of thumb as far as whether they are well enough for it? Thanks, Susan

Thanks for the responses! I agree about the policeman role. My dd's are bothered by alcohol, drugs, smoking, speeding or other traffic violations, crime of any kind, abuse, unfairness, guys who sag their pants (she thinks they must all be up to no good).... She's also bothered by people who are walking on the street who don't seem like they are going anywhere (??!) I don't worry about her right now as far as getting into things she should not but since she's only 8, who knows by the time she's a teenager! Susan

Hi, my dd8 has high titers to HHV6. She's been on antivirals (valtrex) for 4 or so months and I've seen an improvement overall and when we have gone off, I have seen a decline in her behavior. Nothing super specific just that she is less angry, less defiant and less emotional. Not a cure but I'm positive she's been helped by her antivirals. She takes it for another month or two and I'm not sure what happens after that. I imagine we will retest her to see how her hhv6 is doing. The valtrex does not seem to help her to not get sick although maybe she would have been getting sick even more if she was not on it?! Susan

My kids liked the Toffuti cheese slices for grilled cheese sandwiches when we were dairy free. The SoySations shreaded soy cheese. DD7 liked sprinkled on her eggs. I don't care for goats cheese but if it's all I could have, I'd say it's better than the soy cheeses in general and I'd probably get used to it but I don't have any good suggestions on the brands. Good luck, I think we'd benefit by doing dairy free again but while doing gluren free it's hard to do both. Susan

This probably won't help with the increase in IVIG, but, we had HHV6 and HSV1 and HSV2 tested. Our neurologist said that if the body does not process these correctly, they can cause neurological issues and might be cleared by antivirals. I was thinking of this since I just posted to someone else the same info. Susan

Anyone else feel they can't enjoy a glass of wine or a beer without having to hide if from your pandas kid(s)? dd8 is so worried about breaking the rules or being around any drugs or alcohol that she seems to watch my every move. At a young age she was watching my speed on the road and would ask me if I was speeding. She questions if I buy beer or wine as if she was the parent and I'm the under age teenager. She told her classroom I drank TWO whole bottles of wine on the plane. I did, each bottle was one glass and I was on vacation. I struggle between wanting to be a good role model and not drink anything at all and wanting to be the grownup and being allowed to drink some wine or beer without "mom" checking up on me. Then I feel like I must have a problem if I feel like I need to hide it from her. But she is uncomfortable around this and can I blame her for that? Thank goodness I quit smoking years before she was born!! Susan

This does not surprise me but I would be frustrated too. Especially since yes, this is an immune issue but it affects the brain so neurologists should, in my oppinion be very interested in this condition. Any neurological issues caused by bacteria is right up their alley. I agree that you need a new doctor, either a pandas expert or keep on looking in your area until you find one who is willing to learn. I know this is a very hard spot to be in, I was there all last year. BIG HUGS! I know you didn't ask this, but I would add the herpes titers (hhv6 and I think it's hsv1 and hsv2). HHV6 was high in my dd and she improved quite a bit after taking antivirals to clear that infection. Good luck. Susan

My dd7 had droopy eyelids and I used to read up on myasthenia gravis too. Her eyes are much better now though so I am thinking they were a symptom of her pandas or gluten intolerance. Susan

We love weighted stuff at our house. I never purchased a weighted blanket but I made "heavy pillows" out of felt rectangles and rice. I sewed them up and added 2-3 lbs of rice each. And also heavy tubes that you could hang over your shoulders. I would lay them on their legs, arms, torso, head, anywhere. Then they would just fall off as they squirmed later after they fell asleep. They would carry them around, put them on their laps, etc. whenever they felt they needed the pressure. Susan

Sounds very similar to my dd a few years ago. Turns out she was intolerant to gluten and she has PANDAS. Her eating improved a lot by cutting out gluten. Her test results improved a lot, stools improved and she started growing all by getting rid of gluten. Of course getting rid of her hidden strep helped later too. Do you have access to a Dan! doctor in your area? They may not be able to help with the pandas but could help with the overall picture otherwise. HUGS! Susan

Us too, negative or inconclusive celiac panel, positive gluten intolerance and seriously positive response to gluten free diet. Although we don't have EE at our house. We had other gluten issues..... Susan

Very sorry and sad to hear this especially as we move towards our low dose next week. I will see if our immunologist will call Dr. K. Please keep us posted and hang in there. Susan

dd7 has had it for a while now, just gets a pimple here and there, it erupts and then goes away. dd8 had a horrible batch of it that was a very bad experience but I think she had a combination of a few things that made her molluscum seem worse (eczema and a celiac related skin condition called DH although she is undiagnosed at this point). We've been dealing with it for almost 2 years between the two of them. I hate MC! I hope you have an easy time of it and it goes away quickly. Susan