Suzan

Shoot, really? I think I am just not understanding this. I increased her zith to try to get us through this week of testing at school. You think I should try again to reduce this weekend and see how she does? Susan

dd8 had her low dose IVIG (4. per kg). The doc had us start reducing her zith (500 mg daily to 250 mg daily) on 5/6. I could see the negative difference by the next day and it's gotten worse. Separation anxiety, worry, ODC (excessive wiping, frantic need to have her space to be organized) not wanting her sister to touch her, leg pain. These were all good before reducing the zith. She has testing at school this week so I increased the zith tonight and hopefully it will kick in fast enough so she can manage this week. The neuro will give another IVIG, this one an increased dose but still not Dr. K's dose yet. I do have one question which is, after IVIG, could we still see a benefit (even at this low dose) later this month? Or would you assume that the inability to reduce the zith now indicates that it did not take? Thanks, Susan

http://www.kirkmanlabs.com/ViewProductDeta...Group_ID@1.aspx I know there are lots of other products out there but this is one I've gotten before. I actually need to get some for dd7 the doc said if she won't take an epsom salt bath. Susan

Not sure, my kids don't have any issues with probiotics so I am not up on which ones some kids don't do well on. But check it out and you can email them too and ask questions. They are very good at writing back. I take this stuff myself and am being greatly helped. Susan

I like this site and the products here a lot and there is a candida test for children. Problem with yeast is that the symptoms can be the same symptoms as other conditions, including pandas! http://www.candidafree.net/index.htm For my kids, they get red, itchy vag. and bottoms and also my dd7 gets very impulsive. Susan

My dd8 sufferes with this too. I give her L-Theanine (100 mg 2x day) to help calm her and it seems to help. I also used to use these products by Vaxa http://www.amazon.com/Attend-Strategy-Atte...r/dp/B000B8P5E2 The Extress did help but overall the combo helped with her ADHD behavior. This was all pre-pandas diagnosis. Susan

Oh bad news. This is what I am afraid of to with UHC. Good luck and let us know how it goes. Is the new neurologist DR. C or did you get in with the other one.... Dr....? I forgot who. Susan

Congrats on this great news!!!! And thanks for the update. I will read this link and take it to our neurologist on Thursday and see what he thinks about it. Susan

Vickie, thanks for the links! And thanks to everyone for your responses. I remember the quercitin now and will take a look at that to see if it helps. Someone also recommended trying the zyrtec at night so I may play around with that as well. Susan

Oh! Good thought and very interesting! She did not show up as allergic to any of the seafood. But when she has eaten crab and shrimp in the past she gets.... drumroll please..... all OCD and pandasy! You may be right. I will consider this as I look at her zyrtec! Susan

I know we've talked about this a lot but can we do it again or can you find the posts on it? I'm not having much luck with my searches for some reason. I took dd8 off of her allergy meds this past week because she had to get a seafood panel skin test done today. Although she really suffered last week from allergy symptoms, she was in a really good place, the closest to 100% I've ever seen her. She did just get IVIG so I don't know what is from that. Today, after her skin test, I gave her whatever sample the immunologist had on hand. Normally she takes zyrtec in the am and benadryl in the pm and she is using Omnaris nasal spray which I did not stop last week. That seems to be OK. Tonight she was stirred up and worried I was mad at her, worried about not being perfect, sensitive to noise and spent a lot of the evening in our sensory swing. The only thing different that I can see from yesterday to today was the allergy medication. Since we did just complete IVIG for the first time, I don't know what to expect so it may be totally unrelated to the allergy meds. I want to experiment of course. If I could keep her off the allergy meds that would be great but she suffers so much. So my questions for those who have allergic kids are.... What allergy meds do you use with the least amount of side effects? What natural remedies do you use? Thanks!

We have a lot of just right OCD here and I have the hardest time understanding it and identifying it. I think I'm the slowest learner about all this! We have a similar thing going on with our neighbors though. My dd has to play with them. If she can't, she has no idea what to do and will want to call and call over there to find out what's going on. It's very hard to distract her with something else and she will complain to me ALL NIGHT about wanting to play with them. We are going through this tonight Susan

Oh gosh, I practically forgot to vote today. We need to keep this post popping up as a reminder!

My dd's regression was not constant. She would go in and out too. Susan

Yay! I just voted, posted to my facebook and sent an email to my contacts list!

Yay! Happy Birthday Danny and Congrats Mom!

I know melatonin is often recommended here and we take it every night. We take the 2.5 mg peppermint sublinguals. My dd's have taken it for several years and it literally saved me. Our doctors know they are on it and say it is totally safe. It helps them fall asleep but not stay asleep. Luckily that seems to be much better for us. I hear people have used a time released melatonin to help stay asleep. I know you will get some other suggestions as well. Good luck with it. I know you need your sleep and your dd does too! Susan

What did the doctor say? How is he now? Glad you've had some good weeks recently!!

Oh poor thing! I hope he gets better fast (for both your sakes) and that it does not trigger any thing in him. susan

Is it in the joints? One symptom of rheumatic fever is red, swollen and painful joints. http://www.lpch.org/DiseaseHealthInfo/Heal...is/rheumat.html This reminded that for a while my dd would get a spot of red that would be painful and the pain would stop when the red went away. I never found out what it was. She only got it a few times and it was on her hands (but not the joint). Susan

Gluten free diet here but it's because they are gluten intolerant. It does help with the pandas symptoms though. I would really like to clean up our diet more, I'm sure it would help to do less dairy and sugar. susan

Susan, do you know what code the doc is using for insurance billing? I don't but I will ask. We see him on Friday. Susan

It's true, UHC is covering it (suposedly) but let's not talk about it too much in case they retract it Susan

I think he will come back! Don't give up hope! What antibiotics and what dose is he on? Also, where do you live? Can you (if you have not already) seen one the big PANDAS docs? I just started my daughters on this probiotic for yeast and I think it is really great. http://www.symbionforlife.com/index.html Susan

For some reason I could not vote.... My dd's both have low normal IgG and IgA levels. dd8 has very high IgE and she is allergic to everything. They also both have high ATA IgG (antigladian antibodies, gluten intolerant). Susan