Suzan

I started my dd8 on Enhansa but our neurologist talked me out of it. He felt there was too much controversy and had some patients that reacted very badly to it. I thought she was going really well on it but we were just about to do our first IVIG so I took her off. I will consider putting her back on. Susan

Oh, two other things, One is, I am so happy to hear he is doing so well!! The other is, why did you do the gene testing? Was it specifically to see if he had the celiac gene to help you decide whether to go gluten free? Just wondering if there was another reason? Susan

I want to get my girls tested for the gene too to try to help determine if they really have celiac but I have not committed to spending the money yet since the results it would not change what we are doing. Going gluten free changed our lives and we would never go back. I highly recommend it. Your ds may feel so much better (like my dd8) that he would not want to eat it any more. With the gene and his autoimmune issues, I think it would be a really good thing for you guys to do. I have lots of gluten free info in our city so let me know if I can help. Susan

I did a search for zyflamend and found this post. Has anyone continued taking it? Is anyone giving it to their children? Our health food store recommended this to me since I have a pinched nerve right now and have a lot of pain and inflammation that I can't seem to get under control. I was wondering about it for the kiddos. Susan

Thanks Lyme Mom, Let me know if you find anything out. Susan

This is probably asked somewhere but I can't find anything.... dd8 has had 2 IVIG's about 5 weeks apart, last one was .75g, low dose. The next is scheduled for next Friday at 1g. Does anyone know if her past IVIG's would affect the Igenex test? I have been on the fence about getting the lyme test but I think I need to just go ahead and do it since she has this history of pain. We've had the western blot done, negative but I have not seen the results to know if any bands were positive. She does have positive HSV titers. Thanks, Susan

My dd was on lots of Taurine a few years ago. This was before we knew about PANDAS. I was working with a Dan! doctor who was helping with her seizures and many deficencies. Taurine was one of them. She took 4000mg a day. She was on a boat load of other supplements at the time so it's impossible for me to really know. Overall she was much helped by the supplements but learning about the hidden strep and going on antibiotics was what really helped her. I am interested now though in trying again to see if there is an improvement after having her strep under control. I am wondering too if anyone else has done any tests on their child for the taurine levels?? Susan

Thanks for the discussion about Taurine. I had missed the other thread about it and the paper! I am glad to know that this is probably why my dd7 tested low on the CamK when she was reacting more than dd8 at the time. dd7 was on taurine for her seizures (she tested low taurine). She was on 4000 mg a day, pretty high doses. It's impossible to know now if it was helping or not, I guess she could have been 100% worse without it. Susan

My girls both have separation anxiety and are very uncomfortable when they have to go to new situations without me. Going to sunday school, etc. is not something they enjoy. Making it fun with arts and crafts, stories, drama, anything interactive where they don't have to sit in one place and purely listen works best for them. The OCD aspect makes it hard with religious studies since you never know what will freak them out and scare them. They can't watch the news or any show that might have bad weather or crime in it. I get lots and lots of questions after we watch any documentaries about religion, they are interested but it can backfire on us too and all of a sudden they can't go upstairs any more because they are afraid of something they learned about. Right now, they prefer to believe that God is not real. I know they would like an environment where they felt comfortable to ask questions and voice their own views, even if they were not the views of everyone there. Good luck to you. Sounds like you have the interest and will be good at it! Susan

My dd's have similar numbers to your children, dd#1 CamK was 143 dd#2 CamK was 118 dd#2 was on taurine at the time of her draw and I heard that taurine can affect the test (someone on this forum mentioned it but I don't know if that is confirmed or not). At the time of her draw, she was restricting and hoarding food and various other symptoms and was in the process of ramping up. Susan

My chiropractor was inspired by me and my girls to practice Functional Medicine. I can't wait until he gets started on it. I look forward to reading this article more closely. Susan

Our local Pediatric Neurologist and also Immunologist will do IVIG. I think the struggle is finding one who agrees that PANDAS kids need it. We are getting IVIG from our Ped. Neuro. But we have had to work our way up to higher doses since he would not start at the Dr. K dose of 1.5g. Also, unless insurance covers it, I think it's expensive no matter what. I'm not sure what Dr. K charges for his part of it. Ours is done at the hospital and we never see our Doc. during the procedure. Susan

That worked! Thanks, I got both girls there... Thanks Buster! Susan

Wish I could submit one for each child as the answers are not all the same, espeically with major symptoms present. susan

http://www.amazon.com/Carnation-Instant-Breakfast-Essentials-17-7-Ounce/dp/B001EQ4ICA You can find it in the cereal isle and comes in packets or like in this link with a scoop. Comes in chocolate and vanilla and you mix it with milk. My dd mixes hers with rice milk since she hates milk. To make the slushy, 8oz of ice and 4 oz of milk in the blender. It's yummy. Susan

My 7 yr old has a fear of choking too. It's scary to watch her chew and chew and finally spit it out. I am sorry you are experiencing that. Her's seems to come and go so I hope yours goes away soon. My girls are gluten free too . I make them carnation instant breakfast with crushed ice and milk in the blender and it makes a nice slushy that they can usuallly eat no matter what stage they are in with their eating. Do you have a doctor in mind in your area who may be helpful for you? I like the idea of you getting to a doctor even if your parents won't take you. Susan

Hi, not sure if this will be helpful but my dd was tested for EBV as well as other herpies viruses. She was negative for all except HHV6 which she was very high. Our doc put her on Valtrex antiviral and it really helped her to process that virus. She was on it for 6 months and although we are still working through her issues, I feel it was a very good protocol and helped us get to the next level. Susan

dd#1 breastfed for 12 weeks and dd#2 breastfed for 8 weeks. Used formula after and had to keep switching around until I found one that they could keep down. Suspected dairy allergy at early age. Susan

I agree, my dd's are very sensitive to how clothes feel. My dd8 needed baggy underwear for a while. Didn't like them to be anywhere near tight. Hey, at least she's wearing underwear right Susan

Hi, so glad the appt went so well! Congrats! Regarding the allergy shots... my dd8 is getting them. She is allergic to practically everything (trees, grass, weeds, mold, dust, cats, dogs, etc.). I was very worried about the allergy shots but so far, she is handling them just fine. I don't notice any ramp in her symptoms when she gets a shot. I did the first couple of weeks but we have been going for months now and it is fine. I hope very much that it will help her in the long run by calming her immune response to all these things. In the mean time, we are also getting IVIG and are on antibiotics. She is still suffering in the mornings and evenings and we have a lot to still overcome. I could never recommend the allergy shots because I feel like each child is different so going with your gut is my best advice too. I don't know if I will ever know how much they helped but I hope to post a wonderful, glowing post next year about how she is doing after a year of shots. Susan

Fantastic! I hope it continues to get better and better! My dd did best on 500 mg of zith a day. I wonder if I should bump her back up. But she gets her next IVIG on the 13th. I'll wait and see how it goes. Susan

My 7 yr old dd is just like this too. She can't make a decision on what to buy or what to eat. It has to be the perfect thing and its hard to find something that is perfect enough. tantrums, I am glad you had a good vacation but so sorry about the seafood reaction! My dd8 reacted to shrimp and crab but did not show up as allergic on the allergy IgE test. I'm going to have her tested for IgG reaction to it. Hers was not as strong as your ds. HUGS! Susan

I found it, may be helpful... http://www.latitudes.org/forums/index.php?showtopic=8815&st=0&p=73191&hl=+fell%20+off&fromsearch=1entry73191

My 8 yr old dd had an accident on the diving board. She did not hit her head but she hit her back and side. She was triggered after that. I posted about it here and there was a discussion about stress opening the blood brain barrier. I'll see if I can find it and post the link. I hope he feels better soon! Susan

This is us at our house too. I am sorry you are experiencing this as I know first hand how awful it is. dd8 had IVIG 3 weeeks ago and since she's doing so poorly, we are already scheduling her next one. This will finally be 1gm. The other two were less and we've been working our way up with our neurologist. Many things are much better like she can wear socks now, it is not so hard for her to get dressed in the mornings, she will take her pills without any resistance (usually), and she gets along with her sister about 50% of the time (instead of 10%). But she does not know what to eat but wants to eat constantly, she's quick to be emotional, irritated, irrational, unreasonable, she cries that she feels "pandas'y", has pain and "only feels really good when I'm in the water". It really is the only time she is truly happy, if she's in the pool. I am worried about our next IVIG and don't know how long to wait after this one before getting another. I never thought I'd be worried about that since I waited so long to even get the first one. Anyway, reading the responses to your post to hopefully learn something myself. You are not alone, in case that helps. Susan