Suzan

mom_md, we got amazingly lucky and we see her tomorrow! My dd has not been able to walk since Thursday so I am so happy we are going to get started with her. I know we won't have answers tomorrow, but maybe it's a start and maybe a step towards ivig someday. Susan

This is great news! Is she in Charlotte? I am wondering if it is the one I've been trying to decide whether we should make an appt. Either way, I'd love to have her name if she's in Charlotte. Sounds like we need to go see her. Susan Edit... Ah, I found your PM with her name. Since you are now the 2nd recommendation to her, I will be making our appt tomorrow

No, just the usual toilet/bathroom cleaning. If they are not touching their privates to the seat, would it really transmit? Maybe I'm being naive about how much contact there is. Susan I think my daughter pulls her underwear down, sits and then kidda scoots back to actually go. Maybe it wouldn't hurt to use a clorex wipe after they go on the seat itself. Easy enough to do anyway and worth it if it helps....and I'll pay more attention to how they do it. DD8 is very tall and I'm pretty sure she can just sit down but dd6 is very small so she may be doing that.

No, just the usual toilet/bathroom cleaning. If they are not touching their privates to the seat, would it really transmit? Maybe I'm being naive about how much contact there is. Susan

Trust me, I've been wondering what the heck is going on and how they are getting it. I finally just assumed that they have it lurking in their bodies and we aren't getting it killed off. But that said, I'm sure we could be better about hand washing, etc. I try to make sure they wash their hands frequently and of couse especially after using the bathroom but maybe like you say, something far fetched could be happening.... I just don't know! dd7 was getting it one right after the other. She has not had it again since doing the longer round of zith. This year when we were having trouble with it, they were both getting it, starting in December 08. We normally don't use hot water for laundry washing. Maybe this is a good idea to start to include underwear in with sheets and wash with hot water.... Susan

Thanks Kim, I just sent you an email...

Hi, in no way derailing! I think your questions and thoughts are great! I am always looking for new ideas about strep B or V strep A since we deal with both here. I'm pretty sure I never got tested for Strep B during my pregnancies since they were emergency c-cections 7 weeks early and then 4 weeks early. I guess I could have had it all along.....but since my first pregnancy was suspect for an early birth, they may have tested me early. I just can't remember now. My doc did recently test me for both A and B and A was negative. Susan

I agree about the strep test and if she has any strange or suspect symptoms in the V area, I would recommend a swab there too since it does seem like so many PANDAS kids don't get regular strep! My girls may be the minority about this but I feel the need to get the word out.... Big, huge hugs from us to you. guys... Susan

Hi Kim, yes, both girls! I hear it can have a genetic componet. We had the Dr. Cunningham test done and my 8 yr old is solid mid range and almost 7 yr old is on the lower range. Their symptoms present themselves in very different ways. If you are interested, I can send you their history. If so, PM me your email address. I would be happy to share it with you. Younger dd - titers are not elevated and I've never seen them elevated. First strep infection before 12 months old. She's currently doing very well after a few years of doing very poorly. Older dd - just had titers checked and am waiting on the results. First strep infection around 16 months old. She's not doing well right now. I guess they are taking turns! They both have sensory processing disorder (much worse when they were younger). They are both gluten intolerant and possibly have Celiac. Susan

Also, my girls had yeast type infections throughout their young life. They were on loads of antibiotics for their ear, sinus and chest infections. We always assumed their vaginal issues were yeast related but no one suggested possible strep so for all I know, this has been an ongoing issue for them. But this was the first year (ages 6 and 7) where we were able to determine that something was going on that was not candida related. susan

Here's what I know, which I admit is very little! Please anyone correct me if you see anything wrong! The strep at birth that they are worried about is Strep strain B. The strep that is tested in the throat is strain A. They are both strep but different strains. I was just tested positive as a carrier for strep B. Some docs say that strep B is not related to PANDAS, others say that all strep is related and it could affect the kids. Strep B is what you would usually find in the vagina but my kids are getting Strep A there. I guess you can get it anywhere..... They are cultured in the same way as the throat, with a swab. Not fun for a little girl for sure. It's often negative with the rapid so our ped only does the culture. I learned about it in January after my girls had a watery discharge for a few months that eventually turned into an infection looking discharge. Luckily we had a Ped who had seen it before. Susan

I don't know why I have to second guess myself or my dd so I'm trying to supress any doubts that her vaginal strep is back. I should know by now that any complaints of "wetness" means that it's back. DD7 has had it 4 times this year alone. So dd8, who has been having increasing PANDAS symptoms over the past couple of weeks came home complaining of the wetness. I immediately upped her from 500 mg weekly of zith to 250 mg daily. I was wanting to do it anyway since she was starting to follow me throughout the house and say she just needed to be near me, to see me....and the explosivive emotions and reactions.... I still wonder why my girls get vaginal strep A and don't get it in their throat, at least we have not had a positive throat culture in a few years. With everything she's been through the past 2 weeks with her bad blood draws, I can't stand to take her to get swabbed down there. I'm just starting the zith up again. I know I should go and get her tested for strep. I seriously can't force myself to do it. Susan

My girls did not have a dramatic onset because it started when they were around 1 or 1 1/2 years old. Now that they are older, I have seen some dramatic increase in symptoms that seem more like an "episode" that have helped us get diagnosed. But before this year, we've been dealing with strange symptoms or intense issues but nothing that seemed like a dramatic onset. If I had known about PANDAS 7 years ago, I MAY have been able to recognize what what happening, but I still to this day am unsure about that. Susan

Hello! Currently there is no official test for PANDAS. Doctors will run the ASO and Anti-DNASE titers however, low titers don' t mean no PANDAS. My dd has normal titers even though she's had strep 4 times this year and she does have PANDAS. I would recommend finding a doctor in your area who believes in and knows a lot about PANDAS. This can be a problem though, depending on where you live. Dr. Cunningham's test I consider to be a must have and very helpful although you may still have trouble finding a doctor who will know what to do with the information. Where do you live? Susan

We saw lots of shirt chewing at our OT's office. Both my girls needed oral sensory input, whether PANDAS related or not. I made chew "toys" for them so they would have something to chew on where ever we went and we chewed a LOT of gum in those early years when things were really bad. One of my mom's visits to us she commented on how great things were going and that she didn't see that much gum chewing. I knew then that we were in a good place at that time. I taught them to chew gum much earlier than I ever thought I would have since I noticed it improved their behavior! Susan

I emailed him a few weeks ago and he responded saying that he could not advise me since we were not his patient but that if we had a local doctor who would like to talk to him about PANDAS he would be happy to do that. Susan

Dut, I'll post dd's next week when we get ours back. I'm curious to know what the outcome will be. Please let me know what your Ped comes back with about the high and the low IgA too.... Susan

I guess it depends on what you call ADHD. It can cover so many symptoms if you look at the 4 types of adhd. My younger dd is impulsive and overreacts but I would not put her in the adhd category, unless I read the symptoms and then I go, Hmmmmmm????? Older dd has more typical adhd symptoms.

Wow, I love this fourm as I continue to learn stuff about my girls! DD8 has this problem, she eats standing up most days unless she's watching TV and eating. I do notice when she's feeling best she will sit down at the table more often. I don't make her sit at home but at restaurants I do. The girls used to try to sit under the table so we stopped going for a long time! Now our rule is that they can't go under the table and they have to sit approprately. It's so hard for them! They get around it by making frequent trips to the restroom or finding excuses to get up. Susan

Regarding the diarreah, we have not had any trouble with it. If it develops, I'd cut back on the magnesium until it stops. We do use Melatonin and the salts but I had one dd who would not go to sleep to save my life without the melatonin. We use Source Naturals Sublingual pepermint flavor. It's yummy. Another mom here said they use Orange and that it's good too. It's true about going through the salts quickly. I buy them from our drug store and it comes in a pretty big bag. I'm so glad it seems to be working for you guys! I hope it continues! Susan

I think maybe I don't fully understand tics. My dd8 has some strange behaviors, but I have always felt like they are things she can control. They seem intentional and are not consistant (meaning doesn't happen all the time). How do you determine if it's tic related?

My heart is with you guys. I hope you get the help you need quickly. Susan

That's what we use too, the pepermint flavor. I may start to split mine in half again. I bet my girls don't need a whole one any more. I use a 2.5 every night for myself. Otherwise, I can't turn off my mind to go to sleep either! Susan

We have worked our way up to 2.5 mg a night. When they were smaller, when I was more nervous about giving it to them (using it because I was desperate but didn't tell anyone), I would break it apart and give them just enought to get them to sleep. Our doctors know about it now and I have their agreement that it is safe to use so I'm glad about that! I have heard of people giving up to 5 mg a night but we have never needed that much. Susan

Interesting stuff. DD8 would mirror write her name perfectly at a young age (3? maybe 4). It freaked me out too. I figured it was all normal stuff too but something to think about. Susan