Suzan

Yahoo!! I am soooo happy! Vickie and Kelly and everyone who who worked so hard, THANK YOU!!! Vickie, I've been wondering, are there groups who helped us win who we need to support and vote for in July who did not win in June? Susan

Thanks, those responses do help. I am very concerned about the swim team I have her on. All that chlorine and the harsh schedule. I think she found her sport. I hate to take her out. She will hate me but I can't continue with her like this. IVIG is Friday. Susan

Well, I wasn't checking until I read your post and now I can't help myself, LOL. I'm going to have to just go to bed and hope we hold strong for the next 2.5 or so hours. Susan

Oh wow. I am sorry to hear this. Glad you got it treated quickly. At least it explains the ramp. Hang in there... Good luck with the drive. I hope it goes well. Susan

I'm not grasping something about why pandas is ongoing. If the strep or other virus/bacteria crosses the BBB and causes the symptoms, after getting rid of the strep, etc. and the BBB closes, why would the symptoms continue? Also, why would opening the BBB due to stress/allergies/exaustion for example, start the symptoms up again, assuming an absence of the strep, etc. Am I missing something elementary? Is the initial episode the trigger which starts the autoimmune process and that is what the antibiotics/IVIG tries to correct? dd8 is overdoing it with her current schedule. I am seeing new things pop up like last night she had her hands held with the backs of her hands together up against her chest. She knew she was doing it and said she could not help it. She was in a highly aggitated state from being so tired. We are trying to make it through 3 more weeks of swim team. It's probably not a good idea to continue. Susan

You can get a test here... http://www.greatplainslaboratory.com/home/eng/yeast_test.asp This is for the stool test but you can also look at the OAT test that tests for yeast too. Your doctor can do a test for yeast too, I think, but it is not a common practice. Susan

Oh, are you gluten free? If so, maybe this will help if it's your iron stores that are a problem. If you did have Celiac, this can deplete your iron and could be causing (or making worse) the RLS. Susan

http://www.candidafree.net/ RLS can also be a sign of Candida so I thought I'd post this list of symptoms in case that is helpful. Susan

We LOVE Sami's Bakery Millet and Millet and Flax Bread and Millet and Flax Lavash. It has a danger of cross contamination but we have not had any trouble. Our healthfood store carries it. http://www.samisbakery.com/

Hey! Maybe our flare is relatd to the moon right not too and not the other stuff I've been trying to figure out!

Congrats! So she is still sleeping in her room? That is great!

Possible too, I guess there is no way to know. She has been having some trouble in the evenings and feeling "pandasy". More exposure to chlorine, very tired.... Susan

Oh interesting, that lead me to some good internet searches about how stress opens the BBB and also this one: http://www.latitudes.org/forums/index.php?showtopic=6925 so now I'm worried about her open BBB. I had chosen to not worry about all the EMF stuff but now I think I'll start worrying about it. I know my kids are super sensitive and I am too so maybe it's affecting us all. Maybe once it closes she will settle down. Does it work like that, maybe the "excitement" will die down and the BBB closes? Susan

http://www.celiac.com/gluten-free/index.ph...nfreeforum.com/ This is the forum and site that has really helped me. There are many great articles to find and a great group of people on the forum who have lots of great ideas and suggestions too. Looks like our pandas forum has a lot of great suggestions as well!! We have been GF for almost 2 years and it has been a hugely positive experience for us all. It is overwhelming at first but you get used to it and it does become second nature. I recommend removing all wheat at one time and then learning all the little details about gluten as you can. I still learn about stuff we should not be eating that may have been making us sick! Good luck and keep us posted. Susan

Glad it went well and I wish you the best of luck! Susan

dd8 fell on the diving board while trying to do a backwards dive. She slammed into the board and scraped her side. She is OK but bruised and has a 2"x3" scrape. This was last night. She handled the whole thing pretty well after the initial screaming and crying. On the way home she was oddly happy, sort of overly animated. Today she is a mess. Could this type of experience trigger an episode? She is clingy, afraid to go to the bathroom alone, whiny, crying at everything, unable to make decisions, demanding, walking like a toddler at times and has become worried about germs. She won't lay on the couch because she's afraid it will get germs in her wound (that is covered with a bandage and she has her clothes on), what if the dog licks her wound in the middle of the night (would never happen and it's covered), what happens if germs get in it and it gets infected, what if nothing can cure the infection? I'm not sure what is normal reaction to an intense accident or pandas, but it sure feels like pandas. She's on 250 mg of zith a day and we've been putting topical antibiotics on it and taking ibuprofen every 4 hrs. She's scheduled for a lowish dose of IVIG on Friday. Susan

There is no way I could dedicate the amount of time necessary as a single, working, stressed out mom. Hats of totally you and Vickie and anyone else putting so much time into this. It is really super great and so impressive.... but I am not able to do much more than I am doing now with my voting and trying to get those around me to vote. I feel bad about that but it's the way of my life right now. I really hope we win in June so it won't be an issue. Susan

I'm very confused by this train of thought. If your child has a broken leg, give her morphine. If that makes the pain go away, keep giving morphine. If it doesn't help, then you can have surgery to fix the leg. IVIg is used to treat an immune issue. These supplements are bandaids and at best, treat symptoms without fixing the underlying cause. I'm not knocking anyone who uses supplements. We used inositol to get us through a bad winter. But it was to help us cope while we tried to find a doctor who'd help my son get better. Not an end to itself. (and btw - it can take 6 weeks for inositol to work, not 3, and even then, you have to be at a high enough dose, which is trial and error). He should not be withholding IVIg and telling you to try supplements first. Is it just me, or is this crazy? Mostly I'm placating him, I don't think it's going to work. But he has a theory that if it's immune related, it won't work and if it's not immune related but brain chemical it will work. I think he's mostly doing it for the insurance company to tell you the truth since I do believe he believes she has pandas. I'm OK with the 3 week wait to give it a try. Susan

and found themselves on anti depressants and anxiety medicine too!!! I'm trying Klonipin just so I don't drink so much But it makes me fall asleep. susan

dd8 who had her first IVIG (low dose .4 mg/kg) in April is being scheduled for her next IVIG in the next couple of weeks. Our doc said since she handled it well and showed improvement he will move her up to the next dose which is .75 mg/kg. I am nervous of course. dd7, who is having issues with hoarding and food restriction due to fear of choaking and a few other OCD issues I think needs IVIG too. But before we go there, he wants me to try GABA Plus. It's a combination of GABA, L-Glycline, Insitol and Taurine. She's taken GABA and Taurine before but never the other two. He said that if this works, we will see an improvement within 3 weeks. If not, she can have IVIG (starting low dose and working our way up). Has anyone taken this product? I know I've seen discussions of the individual things. Susan

Your post brought me to tears. Thank you for sharing your feelings here and feeling safe to do so. I hope in time your mom will understand more and be more supportive to you. Was the issue with the food because gluten free food can be so expensive or were there issues there before going gluten free? I know we have found some really good prices at super walmart which has a gluten free section now and you can find some good deals on stuff you may like off of amazon.com and buy in bulk. Good luck to you and hang in there. Susan

My dd7 has hoarding issues too so this is good news for me as well. Congrats on this great accomplishment! It's a good reminder that the healing does take time. Susan

Bumping up since this is such great info. I was reading it tonight to verify my dd's hoarding and new symptom, fear of choking. Susan

Michael, my 8 yr old dd started her first IVIG at .40 gm/kg, considered low dose. I was very concerned by this but our local neurologist held strong on the fact that this was his treatment plan. It's been rocky since (April 28th), but recently, I feel like she is really coping well. Not cured, but much better. She's on a reduced abx by 50% since her IVIG. Still has pandas episodes, probably needs another IVIG, but she is improved since before her first IVIG. Anyway, I hope this info somehow helps. We are still in the early stages of it all. Good luck to you! Susan

Even after getting the results back, I didn't know how to read them and I read them as "not in range" when actually they were. I was so stressed. My younger dd's results were 118, just barely in range. At the time of the test, she was acting like a baby at age 7 and restricting most food. She has improved so much on abx. I can imagine some docs may have thought her test could be questionable. But it is obvious that she has pandas and is much helped so far by what we are trying. Hang in there. The waiting is so hard! Susan