Suzan

I know the Aetna plan I currently have specifically says it will not cover IVIG for PANDAS.

I will see what Dr. Trifiletti thinks when we go next week. It's so hard to know what is right for our kids! I am glad that you are seeing some improvement... Susan

We have yeast issues too and take caprylic acid, Candex and probiotics daily to try to help and it does seem to help. Our Dan! has also put them on prescription yeast meds at times to help when it seems to get worse. I think the benefits of antibiotics far outweigh the risk of yeast at this point. I never would have thought that pre PANDAS. Susan

Does she have anything to back up the fact that it's safe to push through? I'm sure she does not specifically for PANDAS patients but I imagine this has come up for other auto immune conditions? Has anyone had discussions with any of the other docs (Dr. K, Dr. L, etc.) about their thoughts on allergy shots? Susan

Today, my dd was complaining of leg and joint pain which she has not had trouble with since she started on her antibiotics. While this was going on, her eyes were big and dialated. Later, she said her pain was gone and I looked at her eyes and they were back to normal. Something happened during that time, I don't know what that was all about but it reminded me of the coming and going factor. I wonder what it is. Susan

I do that too. I just have an ongoing Word document where I write the date and day and make any notes about dd's behavior, good or bad, any symptoms that appear, break through's, dr. appts, unusual activities, etc. Erica, there can be a gradual improvement after being on antibiotics so you may be seeing some of this. After my dd's first obvious episode in January of this year when she had strep, she did get gradually better after a week on zith. But the strep came back so it didn't last. Also, we can have good days and bad days and I don't know what does that either. Susan

Faith, it was strep A. I still wonder about B since I also have had strep B this year and I wondered if it affected my kids but I just don't know. Susan

Oh good, thank you! That helps me feel a little better. s

Buster, really great comments on the website thank you! I wanted to comment on the throat culture, most of my daughter's strep was detected in their vagina. I'm sure we are not alone in this and that there is a lot of undiagnosed strep due to the fact that it is not presenting in their throat. Does it make sense to try to comment on that? I had no idea that you could get strep in any place other than your throat when all this started for us. We had 1 negative and one positive ASO titer between my two girls both with the same strep infection. Susan

I'm chiming in late here but below are our results with the lab ranges in ( ). Our immunologist saw these tests as AOK. We were hoping to find something so insurance would pay for IVIG. She is a low strep pnemo responder but our immunologist didn't see that as significant either. IgG - 822 (572-1474) IgG1 - 502 (432 - 1020) IgG2 - 153 (72 - 430) IgG3 - 54 (13 - 85) IgG4 - 30.9 (2 - 95) We have tested vit. D levels and I was surprised with a really good high number. Susan

Our immunologist suggested going to alternating days of the larger and smaller dose. You could try that for a couple of days and see if he holds. We don't have enough abx to keep on going this way either but I am hopeful that once we run out our doc will give us another prescription. I am so glad to hear that you tried it and he is doing well! Susan

My dd continues to be on the 500mg dose of zith and the valtrex. She's still doing really well. Her moods creep out now and then, like on Thanksgiving, she was very upset about the run in her tights and was over the top upset and using a baby voice, panic and was overwhelmed. Sometimes I see her grimace pop out suddenly and then she brings it back in and gains control. But she continues to take her pills very well (one of our biggest triggers). Today, my other dd commented on the fact that her sister had not done her netti pot in a few days. I said "she hasn't done a lot of things in 2 days" (pretty snippy comment for a Mom, I guess....OOPS!). In the past, dd would have fallen apart at that comment and started her whole contridiction routine (I'm mad at you, please love me). Today she said "Hey, I've been taking my pills, brushing my teeth and taking a shower!" I had to stop and really give her attention for that. She is doing so great. But I have noticed the past couple of days, it's not as good as it was in the beginning. I know that we still have a long way to go but I am grateful for this period of calm. Susan

Is there a way that we can find out about the interviews beforehand and let everyone here know so we can contact them? I think it is very important that this group, some of the most knowledgable parents of PANDAS kids, get heard. Hopefully Beth will come around and see we need to be in this together to help as many kids as possible. Do we know if Dr. K, Dr. L, Dr. T, etc. are on her list of doctors? Susan

She seems to delete any posts that say anything about low ASO titers for sure.... Mine was one of them. Susan

I emailed the address that was referenced for the hoarding in OCD children study since my younger dd does this (she hoards food mostly but she doesn't want to let go of anything). When I referenced PANDAS, he said he used to refer people to Susan Swedo and said that she is researching with "experimental" meds like antibiotics But he did not offer any info in the study for PANDAS hoarding kids. Susan

Thanks for sharing that. It's a great compliment. With everything we go through, we need to hear stuff like that! susan

This morning, my dd8 was following me around the house. This is nothing new to me since she never wants to be alone. Today she laughed and said "I don't even know why I'm following you around!" I think it became a habit for her and now that she is feeling better, she can see that she doesn't need to do that any more but she has more healing to do and probably has to re-learn what she needs or does not need to feel safe and secure. She is not 100% yet, but her mood and behavior is hugely better now. I have hopes that we can get through this and she will grow up to be a happy girl with successful relationships. She used to always make me laugh but there has not been much laughter lately. Last week at her doctor's appt, while we were waiting, she had me cracking up and really laughing from the songs she was making up and performing. It was fantastic. Buster, thank you for your story and thank you for being here for us! Susan

We've never had the rocephin shot before so I don't know about how that affects the zith dose. My dd is 45 lbs, 7 yrs old and her dose would be 250 mg for 5 days (non PANDAS dose). As a PANDAS kid, I would be inclined to ask for a longer dose. Susan

It wasnt that much blood for the test we did and no I go to lab corp.I dont know if Dr T does do blood.I cant get blood done there I have to go to LAb orp because my new insurance su--s!Oh Im a little mad about my insurance.How much zith r u on?Im going to ask Dr T to increase the clindimicin to see if that even can help more.Not sure if the behavioral change is even related Is there a way to find out? Happy Turkey Day Mines in the oven Melanie Thanks for the info! We are on 500 mg of zith right now. We found out by trying it out of desperation. Next day, it was like a different girl. Dr. T spoke to me about possibly switching to clindimicin but that was before we got this success out of the zith so I'm not sure what will happen on our visit. I hope he will agree with a trial. Sorry about your insurance company. I can relate! Susan

Ahhhh, 3 beautiful days! After our increased zith success, I want to believe it's the abx. Fingers crossed that it just keeps getting better. With the blood draw with Dr. T, does he do it himself at the office? I'm worried he'll have blood to draw on my dd when we go and she is terrified of it since her blood seems to stop flowing mid draw. Susan

Isabel, thinking of you guys..... I am sorry about the results but now maybe you can get the help you guys need. Susan

I bet my local immunologist and Dan! doc would be interested in listening in. Susan

Hello Doug and a sad welcome to the club. I am glad you have found some help right away. I wanted to mention, my daughters get vaginal strep. I have one dd who has negative antibodies even after a positive culture. If you have any reason to suspect v. strep (complaints of wetness, redness, burning) she can be tested there as well. Susan

Great!! I am so glad you have someone to help. Sounds to me like the Doc is a PANDAS believer but keeping it out of the diagnosis may get IVIG paid for. Fantastic!! Susan

Oh I'm sorry! It is scary but having confirmation, you will have a new direction to take. But it takes time to digest it all. Did you get the paper from Dr. Cunningham that has the chart on it that shows the PANDAS range? That will be helpful to see, especially for your dh. Susan