Suzan

I tried to PM you but your mail box is full....

Hi Faith! When we made the appt, dd8 was a wreck, worse than I've seen her in a while. I was desperate and worried about our local support. But between then and our appt, I upped her antibiotics and she started doing really well. But I decided we needed to keep the appt to get a specialist oppinion on how we were doing. He can now assist our local immunologist since he's met and assessed them. I felt like we were flying blind here with our current doc and this way I feel like we have some real, experienced help and in the event that we need IVIG in the future, we can have him assist. After he reviews our blood work, he can give his recommendation to our local doc and hopefully she will try what he suggests. Otherwise, I think he will write a prescription for it without us having to travel again. Right now, I feel like both girls are teetering on the edge and i'm not sure which way they will go. His office was not crowded, it was just us and him. Very casual and easy. I think he is mostly getting phone and emails right now and getting everything going. I found our blood draw order.... dd7 has not had any of these done but for dd8, some are repeat tests. ASO AntiDNASE B Quantitive Immunoglobulins (IgA, IgM, IgE, IgG) IgG Sugclasses IgA Subclasses EBV Panel (epstein bar blood panel/mono)

Hi, right now, I don't think it's hard to get an appt. but he is receiving so many calls and emails that I know this takes a lot of his time so if you call and don't hear from him, be sure to keep trying.

He means that if she goes off her current dose of antibiotics, her symptoms come back. I think he means that if you get rid of the strep, you should be able to go to a lower dose to just keep the strep away but when we lower her dose, her symptoms come back. It may be that she has hidden strep that we can't get rid of or.... I don't remember the other possibilities now..... Susan

I hope it's just a small setback. My dd had a few days after her drastic improvement where she bad times were creeping back. But they did not take hold. She is still fighting them back but she is still doing so much better. Susan

Hello! My dd who is 8 and 70 lbs needed 500 mg daily for a real significant change to take place. Susan

Hello my PANDAS family! We are back from NJ/NYC and our trip to see Dr. Trifiletti. It was a great trip all around. The girls handled the trip very well. DD8 is no longer afraid of trains and she had a great time at the top of the Empire State Building. It's possible she's no longer afraid of heights! Everything we did was scary for her and by the end of the trip, she felt comfortable in busy, crowded NY (except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable ). Our trip went as planned and on schedule. I could go on about the things we did, but I'll try to keep it short and about our dr. visit. Dr. T is wonderful. He was so helpful in picking us up from the train station and helping us find food and getting back to the hotel. Thank you Dr. T! He is passionate about PANDAS and has so much experience. The kids had a great time at the appt. We were so tired from the trip but they had fun playing in his play room that had toys and other things to entertain them. Dr. T and I talked over the kids history and then there was a fun exam for the kids (fun meaning they got to show off their reading and writing skills and motor skills). I am lucky that the kids were in a really good space which helped so much with managing the trip but I was wishing Dr. T could see they're PANDAS behavior although he got to see some anxiety and OCD poking through. It was great to be at a dr. appt where the doc totally got what you were saying and understood what you are going through. He agreed that we are on the right path and that PANDAS is the correct diagnosis. He wrote a script for some other immune workups which we need to get now that we are back. After he gets those test results, there may be a antibiotic change, possibly steroid trial in the future. He said dd8 seemed to be antibiotic dependent and if that continues, then switching out the antiboitics and trying the steriods may help. IVIG would be a possibility in the future but he would like to wait and see on that and I agree that I don't think we need it right now but I'm glad to know we can talk to him about it if things fall apart. The girls gave him hugs when we left and have only good things to say about him. I think that the trip was worth it to have an expert on our team. He would like me to see Dr. Bobolus (sp?) if things get worse, but maybe our immunologist would consult with him. He said it does look like there is something going on with dd8's immune system with her lowish numbers but not sure what. He is testing (re-testing for dd8) IgE, IgA, IgM, IgG and subclasses but also IgA subclasses and a couple of other things but I need to find our script and then I'll post the others. Regarding Allergy Shots, he said although it was not his area of expertise, for my girls, he would be very afraid to try them since we don't want to excite the entire immune system and they seem so sensitive (I hope I got that reasoning right Dr. T), so my plan is to not do them. Susan Edit - Oh yeah, regarding dd8's pain, especially the pain where she can't walk. He said he's seen that before and the way I describe it, it sounds totally related to strep. He does not feel like she has rheumatic fever and it's a reaction (can't remember what he called it) to the strep bacteria.

We are leaving in the middle of the night to catch our train to NJ to see Dr. T. Wish us luck with this big trip! I won't have access to a computer until we get back so I hope to post an update on Sunday. I think the timing is good for this trip. My girls are doing better than usual so they can withstand the excietment (although they have a lot of anxiety about it) but they are starting to slide downward and we really need the direction and help. I am pretty nervous about doing it all by myself, so much unknown but I'm trying not to let the girls know that or they would probably be even more nervous. Susan

Thank you, very interesting article! The video's on youtube look like her if you stop at one. And there was one girl who filmed her's while lying down and my does that but while falling asleep. In reading the article, it reminded me that she says she gets them in her thighs too but I never see those, that sounds similar to case#2. Susan

Very interesting, especially since my dd has the roving pain too.

When my dd was younger, her doctor tricked her into a throat swab. He got her all relaxed, told her he was going to tickle her, made her laugh, and then BAM! he swabbed her. She has never forgotten and never forgiven anyone for that experience. Now, she has to be held down by a few people and kicks and screams and it's practically impossible to get a swab. I don't know if I'll ever forgive that doc either. She didn't even know what to be afraid of at that time. I agree that keeping him from the truth tonight to avoid anxiety is good but during the appt be honest right before. I would not let any doc trick these kids. You never know how it will backfire. If she has to have another one, I hope to be able to reason with her about how the swab will help her with her eating or whatever her primary symptom at the time is. Good luck and keep us posted. Susan

Both my daughter's have gluten intolerance (possible Celiac) and cutting wheat out of their diet has improved them very much. My older dd gets very angry when she eats wheat and cutting it out helps her behavior a lot. Also, wheat and gluten by nature causes inflamation so cutting it out will reduce the amount of inflamation in the body which I think is one of the things that is helpful in our children. Good luck and welcome. s

It's possible it is a compulsion rather than a tic. Is your daughter able to hold off on the gesture or finish it in some other way? I asked her this morning and she said she does not know it's coming and she can't stop it. It sounds more like a muscle twitch to me, except for the fact that yesterday she said she felt like she had to do it. Maybe that just meant she could not control it. Susan

That is great news! I hope it continues too!

Oh! I didn't know that about tics. Maybe that is what is going on. I'll have to read up more on it. I thought they had to be repetitive or more constant. s

Here's a link to a post where people were adding their doctors. You could look there and see... http://www.latitudes.org/forums/index.php?...;hl=doctor+list Also, I thought I would mention, before I learned about PANdAS earlier this year, I knew nothing of what to look for and I never paid any attention to whether antiboitics made symptoms go away. I just figured, they must be feeling better, not sick any more, you know?! Susan

Hello and welcome. Tourettes, tics, adhd, anxiety... all things we see here related to PANDAS. Have you noticed whether his symptoms get better while he is being treated for anything with antibiotics? Many PANDAS kids don't have typical strep symptoms so I'd see this as a flag too. Would your doctor be willing to do a trial of antibiotics to see if it would clear up the cough and in that way have a test to see if other things improved? Does he have any other symptoms, OCS type behavior? Good luck to you guys. I'm sure there will be others posting here with much more helpful info for you. Maybe there is a doc within driving distance to you who knows about PANDAS. Susan

They sound like they could be seizures..but I'm no expert! Don't want to scare you! My other daughter has a history of seizures but hers are the absent kind, non-convulsing. I will bring it up with Dr. T on Thursday though, just in case. Although they don't seem like a seizure, I never would have thought my other daughter was having seizures so I would not rule it out. Susan

DD8 has been comlaining of some involuntary movements that do not seem like tics. They are isolated movements. Like her chin will drop to her chest and back up. It will happen one time and she will say that she didn't mean to do that, that her body felt like it had to do it. She says she gets this in her fingers and toes, hands and feet too and they usually are only one time. Does this sound like anything to you guys? It is bothersome to her because she doesn't know why and they make her nervous. She has not had any tics at this point. Susan

So, if a child has this, would the strep (DNase)Titers be elevated, I wonder?? One of my dd's did not have elevated titers and the other had elevated (although not super high, they were high). s

Some other thoughts surfacing about my 7 yr old rght now, always needing to be first or to win (seemed normal kid stuff before but now it seems to be taking an OCD turn). She also counts her bites and compares them to others who are also eating. "how many bites have you taken? I've taken one have you taken two yet?" etc. She has to be the last one with any food left. She will save her snack so she can have it after everyone else has already eaten theirs. I think this is somehow related to her food hoarding issues but I wonder about the why and I can't get anything from her about it. Today she realized someone ate her snack that she had been hoarding and she cried and cried. All I could get from her was that she was sad that someone ate it and that she wanted it right then. She would not have wanted it except that her sister was eating the same thing. She hides the remote control so no one else can use it and really needs to be the one holding it while watching TV. She counts the steps it takes her to do stuff, "My shower is a 7, get in, get wet, wash my hair, rinse it off, wash my body, rinse it off, get out". I have a feeling there is a lot more of that going on inside her head that I don't know about. The more I learn about it, the more I think the basis for all the sibling rivalry at our house is based in OCD. Susan

Since I've known about PANDAS, we have had only 1 vaccine. It was the MMR for my 7 yr old. She did not have any reaction to it. That said, I was not looking for reactions to vaccines through a pandas lense all these years so I don't really know. Susan

Isn't there someone else on this board who also has Chiari Malformation? Or did I dream that? T - my heart goes out to you regarding this condition. I can only imagine how much you suffer. Susan

I do understand!! I did not realize how much I pushed my younger dd away until she stopped being so agressive. I can now show her how to be gentle when holding my hand. I tell her "loose arms!" to teach her how to hold her own arms so she's not dragging me down. It's been so much better after she's been on antibitics since July. She hurt me for years it seems and it was so sad since she just loved me so much. She still struggles with it and it comes and goes. She is 7 now and she really does not get how she affects other people by her physical actions. Regarding your son and school, I hope that if he can get some treatment things will get better (sorry if I missed that he is on any antibiotic treatment yet). My girls are great in math but have struggled with other subjects in the past. My 8 yr old struggles with perfectionism too and won't try new things at school unless she knows she will master them the first time. Her teachers know about this now and are working on helping her. I will say that after antiboitic treatment, she went from 2nd grade to well over 4th grade reading within months (she's in the 3rd grade). But she still has trouble writing legibly and she rushes through all her work at school. Susan

I still get this and with everything I've learned, it's still hard to deal with from other parents, friends, family, doctors. I find I do share a lot less than I used to. Susan