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Thanks for sharing your story I hope everday brings you some improvment whether big or small. Deanna

Hope Carter continues to do well. Hope you can keep us posted. Best to you and your family. Deanna

sorry to hear that Abbe. I am sure you will get him back on track I can only imagine how frustrating that must be. Hang in there. Deanna

Thanks for the reply! good to hear I was unclear on that. We are getting the blood work done tomorrow for the Cunningham test. Deanna

Hi, I think or I should say I am confused. We saw Dr. Latimer she does think that Anthony is PANDAS but wants to get the Cunningham test done to confirm. We have been away for 2 weeks and his tics are the worst they have been in awhile he does have something respiratory going on terrible cough . My first question is can I give regular cough medicine or will this potentially make the tics worse. second question is a steroid burst just a temporary thing ?? is Ivig or plasma exchange always indicated? thanks so much for everyones help. Deanna

Hi Abbe, thanks for all the info. what band of magnesium do you use? way back when I tried a bunch of different vitamins his tics seemed to get worse but I was new at all this and was grasping at anything and everything thought I would reintroduce some magnesium. I thought I read somewhere that Taurate could increase tics do ou know anything about that? Deanna

Hi Abbe, was just curious what supplements/vitamins Nicholas is on?? Deanna

Good luck keep us posted. Deanna

Hi Michele, is your son getting any antibiotic coverage?? Dr. Latimer kept our son on Pen-v-k 250mg twice a day to prevent further infection. I think you should call her agian and ask her for a course of something to see if that works. i think she would be open to that what would it hurt. I am so sorry you and your family are having such a rough time and I hope something starts to work to help your son. Hang in there. Deanna

Hi Michele, How are things going? Did you ever reach Dr. Latimer? Hope things are settling down. Deanna

Hey Michele, sorry to hear you are having such a tough time I would try calling her you could even have her paged since its the weekend. If he was to improve on steroids I think he would have had some improvement by now. I don't think the steroid should be making things worse. good luck keep us posted. Deanna

Hello, the number for anyone interested in Cunningham test is 405-271-2133 Deanna

our pediatrician is adovocating the shots and when we met with Dr. Latimer today she said no way. She said a flu shot was a given the 70.s not sure if she said it was for swine flu but caused a host of neurological problems in people. Deanna

She told us not to let our son to get to snuggly with dogs. She adovocates having dogs vaccinated. I think she chooses longer term steroid use at a low dose to decrease the inflammation in the basal ganglia of the brain. I am not sure what Dr. K's protocal is but I feel pretty confident that she treats each patient individually and maybe sees where they fall with in the Cunningham test. The antibiotics are used to orevent recurrent strept infections from my understanding. Deanna

Hi, we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results. Deanna

Hey Wendy, praying the antibiotic works and that you have a good trip. Deanna

Michele, maybe you should call Dr.Latimer. i know last year when I was on steroids for a respiratory infection my moods were all over the place. i would give her a call. Keep me posted. Hoping things settle down for you. Deanna

Thanks can't wait till next week. will keep everyone posted. thanks for the support. Deanna

Thanks Lisa feeling as bad as I do over the last couple days your kind words mean alot. Deanna

Hi, just a quick question. After IVIG are children on antibiotics or is everything stopped hoping the IVIG will eliminate the tics, behavior etc?? I do hope your son gets better hopefully you will see more improvement over the next few weeks. I appreciate you sharing your experience . I hope today is a good day. Deanna

Thanks Michele appreciate the input. Deanna

Hi Michele, glad you had a good visit and were able get good information--we see her on the 5th. Let me know how your son does on the steroids did she say why she does 3 weeks and not the 5 day bursts we read so much about. hope things get better. Deanna

Hi, Day four of antibiotic It thought I saw a reduction in tics but last night ticing like crazy. I should also note my son is on 25mg of Topamax at bedtime. should I wait a few more days I can increase the topamax but I really don't want to because I do beleive it is PANDAS we see Dr. Latimer on August 5th I am just so confused. He also has a cough don't think its allergies strtept test both negative. Deanna

thanks for the article link--I have read before but liked reading again everytime I read it I learn something else, so thanks and hope everyone has a good weekend. Deanna

Thanks Vickie, appreciate the feedback. Deanna