Suzan

This topic is near and dear to my heart since my dd failed many of the serotypes and our first immunologist said to revaccinate, our Dan! doc said no way. So we have a new immunologist who I am hoping can help us figure out what to do. We see her on the 14th and I will bring this up and report back. My hope is that if she is unsure she will discuss with Dr. K, etc. Susan

Wow, congratulations to finding this piece to the puzzle. This is huge!!! Susan

I'm going to try to go to sleep now, but wanted to say, THANK YOU. This made me smile for sure. "Hey Dad, get to the airport to pick up your granddaughter..... surprise!" What you say makes sense about where she feels most comfortable. I know I'll feel better in the morning and I'll keep my daily log of what happens and just keep on keeping on.... Susan

Bronxmom, very interesting and heartbreaking. I am sorry you are not well. Have you been on a good round of antibiotics for your sinus infection? Will your doctor consider longer term antibiotics for you to see if you get well? Susan

So, my Dad implied that he thinks my dd is just playing me, manipulating me to get what she wants. I don't know what she could possibly want by her behavior except to maybe be in total control. It's not giving her happiness or anything that's for sure. But it plugged me into the fact that maybe I'm a bad mom, that I don't know how to set limits or am not creative enough to be the manipulator instead of the minapulated. She always seems fine when we go to the grandparents house (we see them once a year) and she can hold it together pretty well for school and at friends houses (as long as she does not have strep). Why is she so bad at home? Maybe my Dad is right..... I don't know why it's bothering me so much (except for the fact that it's my Dad and I care what he thinks, which is a pretty good reason) because I know she's sick, I know something is wrong, I know she does not feel well. I know she has PANDAS and maybe some other things going on. But she's driving me crazy and I feel like I should be able to reason with her, or trick her, or teach her well enough to change her behavior. So then I walk on the edge, like I'm going to lose my mind, knowing that if she had another parent, they might just beat her to get her to comply and I'm so thankful that she has me instead of someone else who would not understand her but then I'm so tired and worn out and frustrated and second guessing.... Our next immunologist appt is on the 14th. I just hope that brings some new ideas and some new hope. The antiboitic treatmet really turned around my younger daughter who seems like a new person. My my poor 8 yr old dd, she continues to have some big problems. susan

Manda, if it's any small comfort, I thought of you a lot today. My dd is in a bad emotional state and I feel like I will lose my mind with her. Whenever I felt like I would start to slip off the edge, I thought of you and Pixie and how much you are struggling and it gave me the strength to keep on going. My heart goes out to you and your family and I really hope things start to improve. Susan

I just wanted to add my HUGS to you. Between my girls, I have a pill taker and a non-pill taker. But my pill taker is very taste sensitive so if I have to give her any liquid, she used to vomit immediately. Even though she can take pills, this does not mean she wants to take them and every day is a struggle. What ends up working for us is making it a game. Usually it's where I challenge her to take whatever she needs to take before "X" (X being before I get back from changing my clothes, before the clock hit's 7:45am, before I'm done eating breakfast, before you finish going to the bathroom (yes really!), etc.). This is hugely annoying to me but it really helps her to take her pills. If it's a liquid she needs to take, this is not always as productive but it still is useful. Anyway, I have had to do all kinds of things to get the meds in and it's been stressful, unsuccessful... I have at times had to threaten her with suppositories and shots (these threats usually worked too). The Target syringes really are the best. We need to get something filled there to get another one! My younger dd does not take pills. She will be 7 soon. I feel like she will never learn. I am lucky that she will take any nasty combination I offer her. She complains a lot but will do it without it coming back up. HUGS!!!! Susan

My daughter gets dizzy spells and limb/joint pain and she falls a lot (maybe from muscle weakness??) and she also does get tingling in her hands and feet that is very bothersome. We don't know yet whether it's just PANDAS or some other underlying immune issue however since we are still looking into that. Susan

I did just find this online..... "Steam vaporizers can be dangerous around children because they can cause burns. They also have the highest energy costs. However, there are no bacterial or mineral concerns with this technology. " I didn't know this about steam vaporizer. I might get one to use but not in the kids bedroom, somewhere like the kitchen to just try to help with overall house humidity. Last year I was using a crock pot and just putting water in it and heating it up. It's probably the same principal. Glad to hear there were no bacterial concerns in doing that. Susan

I don't know the answers to your questions specifically, but humidifiers stress me out. They are a breeding ground for mold and bacteria. I would look for a filterless and clean frequently. I hear every 3 days is recommended. I try not to use them now unless things get really bad in the winter because I can't stay on top of the cleaning. I don't know if it would spread illness any faster than normal daily contact though. As far as the HVAC filters, I buy the allergen ones and change every 3 months. I wonder if buying the cheaper ones and change every month would be better? Susan

My 8 yr old will hit herself in the head, face or on her legs when she is out of it. She also abuses herself verbally saying she is a horrible, bad person. It is heart breaking. Susan

Hello and welcome. I can only say that I am very sorry that your son is going through this but I am so happy that you saw the segment on Saving Sammy and that it may help you. I Hope you read the book as well. Although it is very painful to read, I believe it may have some information that will be helpful for you, as well as this forum and the links already provided. Good luck to you. Susan

I questioned whether I should put myself, our ped neurologist or Other. Our Ped Neuro taught me about the condition where I had never heard of it before. But once our titers were low, he dismissed it. I kept on with the research and this forum and got Dr. Cunningham's test which was positive and then I got our Dan! Ped on board. I believe my girls have had PANDAS since they were very young (before age 2) and if caught earlier we woul d have all had an easier life so far. I did select myself though because I was the one who kept pushing and searching and following what I came to know in my heart. Susan

Whoa, this is interesting and important to understand for us since we are somehow all wrapped up in these test results. How do you test for whether or not you have had or still have it especially if you have low immune response to the titer test? Susan

Happy Birthday Josh! Here's to a year of improvement and healing! susan

You know I'm up for that. I'll see about the lot numbers, maybe they will be sent with the history to Dr. O'Connor. Maybe we can include a little history like what type of infections they were prone too since you mention ear infections. My girls were prone to ear, sinus and chest infections. I can't wait to see how many documented strep infections they had. I don't think it's as many as I think I remember. Susan

I'm sure my girls had a schedule similar to this... They got their first strep at 16 and 12 months old but started prevnar earlier than this. By the time dd8 was gagging herself and pulling out her hair (18 months?), she had had at least 3 doses of prevnar. "Prevnar is given as a four dose series, starting at two months of age (with a minimum of 6 weeks of age). Subsequent doses are given at age four months and six months of age, with a fourth dose at age 12-15 months (and at least two months after the third dose). It is recommended that all children under age 23 months be given this vaccine. " Susan

From what I've seen, it totally depends on the doctor. The one that took dd's titers said he would not know anything without re-vaccinating her. I'm not sure what our new doc will think. We go back on the 14th of Oct. Some see low titers as a sign of immuno deficency, others need to see certain serotypes low enough, other say it doesn't matter. Fun huh? Susan

Chills here too.... My daughters, born in 8/2001 (8 yrs) and 10/2002 (almost 7 yrs). Both received the vaccine by the age of 2 in Charlotte, NC. I'll have to check their records to see how young the first was given. DD8 has taken the pneumo titers test and failed many of them but the jury is still out on whether that is considered significant for her. Susan

Both my girls have PANDAS. I agree that I would not freak at this point but keep a close watch on her. It's hard to tell sometimes the difference between normal kid stuff and something more. HUGS! Susan

Thanks! I just sent my email!

No, but it sounds great. Are you going to try it? It will get expensive to get the whole family on it but if it actually worked it would be worth it. Susan

I love it! Why not?! Susan

So, maybe this has to do with my last email to you, maybe I don't really understand OCD or what is going on with DD8.... well, that's obvious anyway, no matter what it is, I don't understand it. But the behavior you describe is very similar to what we are experiencing. I'll do some more internet searching to see if I can get some more understanding of it. Susan

I'm setting up to record the Today show, I don't watch it since I'm at work.... Is it just called Today? I see it's on for a few hours, is this right? Susan