Suzan

I cry, laugh, scream, lock myself in the bathroom, hide under the covers, make up songs in my head about how much things suck, wish I could run away, live in fear, call my Mom. Every day right now I wake up and thank god that my dd8 is feeling better. I don't want it to ever end. I don't have any advice for you, I am sorry. I only have understanding and compassion for what you are going through. Nothing worked for us when she is like that. Susan

I think it would be beneficial to see them and find out how they might be able to be of support. I would take the appt and then hopefully there will be a cancellation. Otherwise, when you do get there, you will find out if they will be good to have in your court and you will be a patient so they can help. We don't see our neurologist often now but if things get bad, he may work with our Ped and Immunologist. Good luck! Susan

I know, I kept wishing Dr. T could have seen them when they were in a worse space, but I am so grateful that they were able to take the trip and manage so well. DD8 (blue hat) was afraid with each new thing she tried but she adapted very well. For OCD kids, especially with germ fears, it's a big, dirty place. We ate tacos on the ground in the train station. And with those bathrooms on the train, I'm telling you, I was worrying about germs. I think for me, that was the worst of it. Susan

Oh WOW! Never knew that... My ds has dilated eyes a lot! Yes, in my dd, her eyes could dilate so big and it was often a month or two ago. Her eyes could be normal one miniute and huge the next and she would be falling apart. I would compare her eyes to her sisters and it would be amazing the difference in the same light! I have not seen them dialate since her larger dose of antibiotics started working. s

It's a Panasonic Lumix 6X. It's a pretty good little camera for the price!

LOL!! I noticed that too. So nice to see them so small! Vickie, Twilight Zone music, perfect! Thanks for looking you guys... It's my bedtime... Good night! Susan

Hello All.... I wanted to share a picture of my girls and our trip to NY with you. My mom brought to my attention a bill board from our very first photo of the girls in NY. She noticed that the billboard in the background said "Sick All The Time?" I zoomed in and I realized that it was an add for the National Primary Immunodeficency Center website that I check out frequently wondering about CVID or other immune related issues for the girls. This seems like a wild coincidence! Of course, once I post one picture, I can't stop, one is of them at the top of the empire state building and the other two just really great close ups that remind me they are beautiful and doing really well right now. Thanks for looking. http://images1f.snapfish.com/232323232%7Ff...B%3B89338nu0mrj http://images1e.snapfish.com/232323232%7Ff...%3C843338nu0mrj http://images1e.snapfish.com/232323232%7Ff...%3C833338nu0mrj http://images1f.snapfish.com/232323232%7Ff...75%3B3338nu0mrj

Good luck! I hope your travel goes very well. It sounds like you have a great plan. I also hope the IVIG goes well too. I look forward to your update! Susan

Edit....

Wow, nice! that is a lot of work and the mayor read his paper?! Hugs and hang in there and I hope you get your IVIG approved. Susan

LOL! White wine too? That's what I'm drinking right now!

Well, I know she does not like to get dirty, no water in the eyes, no icky stuff on her hands, I always saw that as sensory, not OCD. She is very much into how to do things right, she is more concerned with others not doing it right since she knows how to do everything right! She does not tell me how she feels unless she's mad that someone wronged her. I do know she's not into sharing much and what's her's is hers! I'm not convinced it's OCD either, but I had the thought today for the first time that maybe it was. Today I asked her why she was not playing with the neighbor kids and she said "I don't like to play...... with KK, that is". Granted this little girl is 5 and can be quite annoying with all her questions Susan

DD7 does not have any close friends. She wants to have friends who she can play with and spend the night with. She is always sad that her sister makes friends so easily. But everyone loves dd7. She would have tons of friends I think but she always finds a reason not to be friends with someone. Here are all the reasons I've heard recently. She said I write sloppy so I don't want to be her friend She was mean to me at school so I don't like her any more They are too loud and wild They don't put away my toys when they are done and they pull out too many toys at once She tries on my shoes and won't stop if I ask her to I'm too tired I don't feel like it Just because I don't know If she finally agrees to have someone come over (or if she gets invited to someone elses house), she will have a great time but then find a reason to ensure it never happens again. Does this sound like OCD related? I can't quite figure it out. Susan

Oh yes, well for a 5 yr old it's a little more unusual. Sounds a lot like my 7 yr old now. Susan

Sounds like something that would happen at our house. It's hard to say with a 2 yr old but I'd say it's something to keep your eye on. I don't have any reference to "normal" but I spent years thinking things my kids did were normal, just on the extreme side. It might be helpful to start to keep a list of things she does and the date to keep track in the event that things start to get bad. I wish I had better record of what happened when. Susan

Our Dan! doc did not want my dd on liquid abx long term so I crush the pill since she can't swallow pills. It tastes horrible but I put it in a smoothie and she just deals with it. Congrats on finding the strep connection. I am sorry about the diagnosis but now you will have a direction to go in to help your son. I have 2 girls with PANDAS. My 7 yr old is 45 lbs and 250 mg of zith for 6 weeks helped turn her right around. I've been weaning her off and she is showing signs of PANDAS again so I may up her dose soon. My 8 yr old did well on this dose but eventually failed and I now have her on 500 mg daily. She's doing very well on this dose. She weighs 70 lbs. For your son's weight, it sounds like a good dose to start on to me but I think it should be for longer than 1 week. If you see an improvement, will your doc give a longer course? I think 6 weeks to start would be ideal. Susan

Wow! What abx and how much? Positive strep, wow! Great doctors who know PANDAS, wow! I am happy for you! The frontal lobe thing though, I don't have any experience with that. Good for you for getting out of google. Give yourself a rest for a while and absorb everything. Regarding the biting, my younger dd did a lot of biting. For her it was sensory. I still push her away if she puts her mouth on me, afraid she is going to bite, even though she does not do it any more. I bought things she was allowed to bite on and told her if she felt like biting she was to get one of those things. This did help her but I had to keep reminding her. We talked about the biting and how it made others feel, blah, blah, blah, but really, she was having an emotion she didn't know how to handle. Allowing her to get her bites out on appropriate things helped. Just a thought anyway. Susan

We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try. Lisa, who are you going to see there, do you know? Susan

Melanie, will you remind me, how much and what type of antibiotic is he on? I am sorry things are so bad right now. Do you find the Risperadal make it worse or just no better? Bug Hugs. Susan

That's what I do too. It seems to be working.....

Hi ncdad, barging in to say I am seeing Dr. O'Connor. I recommend her as someone who believes in PANDAS and is quickly learning and increasing her PANDAS patient base. She's especially good I think if you have one of the top docs that she can conference with to ensure you are on the right track since she is new to it all.

Mine is Hashimoto's Thyroiditis which I believe is related but not the same. I got it when I was 29 when I was exposed to disel fumes (at least we think that is what activated my immune system in this way). Susan

All girls here but no boys to test the theory against and so far, it's just my girls, no one else in the family has it. I do have Hashimoto's (thyroid autoimmune) and there are some autoimmune conditions on my Dad's Father's side. Not sure what that all means. Susan

WOW, I think my girls will profess their love for you in the morning when I tell them about this! Heck, I will right now! Thanks! Susan

At this point, here's what I do... I have all my former test results, questions and PANDAS research or info ready with a copy to hand over..... But before that, I am clear with myself about why I am seeing this new doctor. Sometimes it's related to PANDAS and sometimes it's related to other things (like immue testing) where I would want the doc to know why I'm there, but also that it doesn't matter whether they believe in PANDAS or not, (well, not really but suspend your disbelief for a minute )....but I'm very clear on what I want them to do. At the very least, I have some good test results that I can then take with me on my quest for a good doctor. Additionally, finding local PANDAS parents through this board who you can bond together with to find good doc's in your area who are willing to work with you and form groups to help share information, etc. with so we all continue to learn and move forward. Susan