Suzan

I guess I was hoping to find out if they mean low IgA like way below range or if they were implying anything else.... (for my dd's age the low range is 34 and her IgA was 37) Our immunologist is not concerned about her low normal result. Thanks!

I am interested in this because my kids both have very low normal IgA. I tried to search on IgA dysgammaglobulinemia but the stuff I saw was not getting me what I was wanting to find out which is how low is low? Does IgA dysgammaglobulinemia mean an official deficency? Susan

monarchcat - we were on 250 mg daily (she's 8 and 70 lbs) so I decided to double it. I thought I'd do it for a week and see how it goes. If it's working, I'll call our doc and see what he says. I don't want to burn through my abx and not have enough, you know?! I bet that advil did work for you, I find that if I use it every day, I don't notice that it helps but if I take breaks, it starts helping again for a while. s

I'm so glad you guys had a good day too!!!

Someone showed me this site a while back for finding fun things..... http://bestsmileys.com/pageindex.htm I totally agree that this is way too soon to get too happy but man it's nice to have a good evening. I will watch her too and try not to be too disapointed if it doesn't stick. Susan

So, this question has probably been asked many times before.... but can increasing antibiotics help in only one day? We increased the zith to 500mg daily last night after our bad night last night. This morning was super great and tonight now has been amazing. Pills taken (without me even asking ), washed the dishes and enjoyed it, laughed, had fun, danced around. She had a little trouble with her homework but not too bad. It's the best day we've had in months. Dare I do the happy dance? Well, even one great day deserves a happy dance. Susan PS... We start Valtrex soon to try to clear any virus that may be stuck in side. I decided to wait until the weekend before we start so I can get a feel for how this abx increase will do.

I'm so glad you had a good appt! Keep us posted! We are considering going up to see him too but it's so far away!

My 8 yr old has this. The doc's do not believe she had rheumatic fever and she's had RA tests and various other tests to see if they can find anything but have not been able to. I have noticed though, that her pain goes away with ongoing antibiotic treatment. Susan

Well, at least there is a break sometimes. This morning, dd woke up early and in a good state of mind. She has eaten breakfast and gotten dressed by herself with no incident (except for some sibling rivlary over the remote control ). I love you guys. Susan

I am so glad about all this!!

The best way is through epsom salt baths or foot soaks from what I understand. It has been very helpful for us. Otherwise, I have given Natural Calm which I think was fine but it is not so easy to hide for the taste sensitive. Pills can help but they are hard to absorb. We also have a liquid spray that I like to rub on their feet at night. I find that it helps them sleep and also is calming. DD8 can often feel her anger leaving in a salt soak (if I can get her in the bath). http://www.care2.com/greenliving/health-be...alt-baths.html#

WorriedDad - TOO FUNNY! Nice to know I'm not the only one trying to fend off a drink after the kids go to bed! I wish we could all meet up too. Susan

I wanted to add my sincere hugs to you. I am so sorry this has happened. I know you are crushed and worried and tired. I hope that tomorrow things will somehow look better and more managable. Susan

Smartyjones, you reminded me of a few things, maybe I need to keep a list so I can remember when we are in the middle of it.... Once she told me when she's like that she needs an apple sauce and glass of water. We did that for a while and it would work to bring her out of it but then it stopped working. She also likes heavy pressure. Maybe if I would have lay on top of her today she could have gotten control of herself, or the sensory brushing techinque, or a popcicle. I bought a swing from IKEA for hopefully an affordable sensory swing but she doesn't like it. It's not soft enough and she wants one like they had at her OT's office. I don't know if I spent the money for one like that if it would help for long enough to justify the money. Anyway, I'm just rambling now. I appreciate everyone's responses. It seems wrong to be glad I'm not alone but it does help. Buster, such a great word for her...contradictions. I always called it the push-me-pull-you for lack of a better word. She's always "go away, come back". I tell her now, "if you push me away, don't get mad if I leave". Usually then she just laughs like she's crazy if I say that. She must know it makes no sense but she can't help it. Susan

I'm writing this down to you guys in my own way of coping so thanks in advance to listening, I guess you are my therapy! Right now my dd8 is lying on the kitchen floor on her stomach with her 6 times flash cards. She is hyperventilating and whining out each answer as she turns them over and when she gets them wrong, she groans and moans and wails out that she got it wrong. If I try to help her, she gets mad, if I igore her, she gets mad, if I'm helpful, she's mad, if I get annoyed, she falls totally out, if I correct her, she falls apart. She gets it done and she says 'please just one more time, I just want to do it one more time' and it all happens all over again. Before this she was trying to do her homework. I asked her a few times to just do it in the morning when she felt better but she wouldn't stop trying to do it but she can't do it. The teacher changed the spelling rules on her and so she was confused whether she had to do one or two assignments and it was so overwhelming she could not do it and she could not even write legible. Now she's trying to do her homework again. She's crying 'Mommy help me, come sit with me, please, help me, I can't do it' but if I go sit with her I do something wrong and make it worse. She looks so absurd that if I'm not mad at her, I end up laughing tonight since I'm just sitting here not knowing what I should do and I know that's not good at all. Our Dan! doc referred me to a behavorial specialist today. I guess we need it. I am not equiped to deal with her. Plus, she's eating like crazy. She won't stop eating. I think she's trying to make it all better by stuffing herself. susan

Hi pmoreno..... Our doc just prescribed this for dd8. She has elevated hhv6 titers which shows that she has had or has this herpes virus. His theory is that getting rid of the virus may help with her overall issues since she seems to react with pandas episode to bacterial and viral illnesses. I am nervous about starting her on them due to possible side effects. He wants her to try it for at least a month. Did you continue to use it for Gaby? Did you notice if it helped or just made things worse? My dd gets lots of canker sores inside her mouth but mostly I'm hoping that it will help her clear the virus and maybe it will help prevent her from getting the flu (a bonus) if it works that way. Susan

We are only doing antibiotics. The jury is still out on whether I can get IVIG for dd8. So far, it's not in the works. I want to try her on a higher dose so I am going to get her in to our Dan! doc this week and ask him if he will approve a trial. HUGS!

My dd is much worse in the morning and night. In the morning, she does not want to be talked to or touched and she needs to wake up just right or everything is off. In the evenings, she starts to deteroriate and feels and acts awful. There are more demands on her at those times too (get ready, brush teeth, take pills, be on time, do this, do that...) and she can't handle that well at all. MegsMom, we follow the same sleep philosophy as you did. At times it was the only thing keeping us together, that we got enough sleep! DD8 finally does sleep in her own room all night but she has to fall asleep on the couch and then I walk her to her room after she's been asleep for a little while. If she starts out the night in her own bed, awake, she's too afraid. Susan

Hi and welcome. We use Attend and Extress products by Vaxa which I find to really help with ADHD type symptoms. http://www.vaxa.com/636.cfm I have 2 girls with pandas and I find that they both have responded very differently to antibiotics so there may be no way to know how your dd will respond. I hope that antibiotics are the answer for you but if it does not resolve your issues, check out Attend and also, omega 3-6-9, a good broad spectrum multi vitamin like Kirkman Complete and a good probiotic to combat yeast with the antibiotic. I'm sure others will have really good suggestions too. HUGS! Susan

Urgh! Frustrating for sure! Hopefully, since you have gotten so much help, it was just an unthinking comment to the school. But yeah, after all that, it seems he should be saying "yes, there is such a thing....!" to the principal. I know how much small comments affect how we are feeling and doing so BIG HUGS to you! Susan

I live in Charlotte. NC and yes I currently do have out of network benefits until 12/31. After that, I can choose a plan that has out of network benefits, but the only plans available are plans that have % payments. There is no co-pay available for any office visits or perscriptions so I wouls pay a % for anything which makes it impossible to predict the costs. If I knew I had to select that plan for a reason I would but otherwise, since we are big insurance users, I have to go with the in-network, copay plan. Susan

DD7 - 118% at the beginning of an episode. Her symptoms were serious age regression, fears of death and dying, anorexia and mild OCD. She responded very well to daily dose of zithromax and it resolved most of her symptoms. DD8 - 134% at the beginning of an episode. Her symptoms at various times are raging, seperation anxiety, fears, worries, facial grimacing, grunting, huffing and puffing, refusal to do anything asked of her, emotional outbursts, control issues, sensory issues, acting like a dog, probably all realted to OCD. She responded to daily dose of zithromax in the beginning but it did not resolve her symptoms ongoing. I like what the other poster said about combative, defiant and emotional. That really does a great job of describing my dd. Susan

Wendy, I am so sorry.... I know you are devastated. I am thinking about you and your family. Please keep us posted. Susan

Good morning and thanks you guys! I really appreciate being able to come here and vent and look for support. I feel wasted today, I think the stress from being so angry and scared last night probably wiped my already failing adrenals. I feel like I won't be able to make it through, like it's taking all my energy to just walk around, much less to be a good mom. Today we are running errands and then going ice skating. I must be insane. I have drafted a letter to the immunologist and I also have a call out to my Uncle who is a family doc to ask him his oppinion of my conversation with the nurse to get his thoughts on how he would react if one of his nurses had a conversation like that with a patient. I feel like I want to get a sense of how the immunologist will react to my complaint of the conversation. I'm keeping it as neutral as I can and just stating the facts and letting her know about my insurance dilema. But it's hard to talk about that without saying "are you going to do what I want or not?" She's not that kind of doc and it's a fast way to probably make her resistant. It helped me anyway to write it down. Oh yeah, I also am going to get an appt with our Dan! doc in the mean time to see if I can get dd's zith prescription renewed to hopefully stash enough antibiotics to get us through and I'm going to up her to a daily dose instead of every other day. I want to do a trial of 500 mg daily for a week or two to see if this helps. I don't know if our Dan! will agree. Does anyone know if for an 8 yr old, 68 lb girl, would this be OK to try? Is it unreasonable to ask the doc to clue me in on her thoughts now if we do have to wait until January to see her so I can feel assured she is going to work with us? Susan

She told me she wanted a "full picture" and that maybe some OCD treatment would help us make it through until we had our treatment plan in place. I'm under the impression that she is onboard with PANDAS, wanted to make sure there was no underlying issue. But then things like this happen and completely throw me off. I'm scared that I'm going to select this insurance and then have no options when I have to fly to Dr. K or Dr. Latimer. I guess I'll have to fully re-think the insurance thing. Our other options are not great for those who have a lot of medical bills. Susan