vermontmoms Posted March 16, 2011 Report Share Posted March 16, 2011 (edited) Ok, we have most of our results back from Cunningham and I am so confused. I have been reading older posts today trying to figure this out but can't...please help!!! Do their symptoms/onset/etc. indicate PANDAS? If yes, what steps should we take? We are going to see Dr. L. in a few weeks...Do you think she will say they have PANDAS? Thanks for any insight you can offer...I am spinning after reading tons of articles and post after post today...just need some answers even if it is just your opinion!!! Jen Now he is the history for each twin and their results: TWIN A - Current age 7 > Sudden onset of tics at age 3.9yrs (May 2007) > The tics were blinking and facial grimace and deep breathing almost to the point of passing out (had us very concerned). > Also at this time he tested positive for active strep and was put on antibiotics. > Around this same time, we were camping and he slipped in a bathroom and hit his head (didn't take him for any formal CT/Xray exams but did ice and called ped who said we should monitor him...we also checked pupils, and normal head injury protocol and all were findings were fine). > All his tics motor/vocal started w/in a week or two of these above incidents. > Never really had terrible twos but vividly remember the constant battles with him during his third year. He became very rigid, literal, very ragey type behaviors, inconsolable, had to have his way, extreme problems with temperature changes, became very hard to parent, etc. > 4yr old check-up 7/07 - we mentioned all of the above and they brushed it off as transient tic syndrome. > 5yr old check-up 7/08 - changed peds this time the Doc said how long has your son had Tourette’s? We said, what? Got informed about Tourette’s he thought we should try meds...I said no give us a referral to ped neuro. He did... > 10/08 - Confirmed Tourette's dx from ped neuro. > Started researching Tourette’s, started dietary changes, and started watching symptoms did this for over a year. > 10/09 Joined PANDAS FORUM…started watching for PANDAS . Our new ped started treating more freq w/antibiotics as we started to notice trends in his tics vs. illness or exposure to Strep. > 10/09 – dx with H1N1 – zithro given (tics all the sudden stopped) > 3/10 – Started making disturbing comments about death and how we would be better off w/out him. Consulted school psych. > 4/10 – dx with Scarlett Fever (Tics started again in early April) Once we noticed rash we called and were seen…tested positive for strep and was dx w/ scarlet fever. After strong antibiotics, tics were again gone and this time remained absent over summer and through early fall and minimal OCD issues were present most I would say are just normal childhood behavior). > 7/11 – Deer Tick found on child in right ear w/in 24hrs; removed tic took it to ped again started another course of antibiotics but Lyme test was not given. His tics and ocd were still not present. > 10/10 – exposure to Strep from best friend – Tics started w/in 48hrs, took for rapid strep test, result neg. no antibiotic given. Tics and OCD climb rapidly and new tics emerge. Tics are very noticeable in school and teacher was really concerned things continue to get worse over next month. > 12/02/10 – Ped order labs (we run Cunningham Test) > 12/07/10 - Ped orders Augmentin, tics surge to never before seen levels and OCD is high. Tic every 2 seconds and had difficulty breathing. Gave baths of Epsom Salts just so he could breath (4 or more a day). Almost took to ER. Day 6 of antibiotics finally saw a reduction of tics and ocd. He could go back to school. Tics remained mild for next month. > 1/10/11 – Contracted Flu (Type A) confirmed by culture > 1/20/11 – Given Zithromax for secondary infection from Flu. > 2/11 – 99% Tic reduction and OCD almost gone. > 3/1/11 – Tics increase and OCD behaviors are back. Request the results from Cunningham to see what next steps should be… > RESULTS FROM CUNNINGHAM: CAM K II – 156 ANTI-LYSO – 160 ANTI-TUBULIN – 1000 ANTI-DOP 1 – 4000 ANTI-DOP 2 – 4000 > Cunningham Results indicate PANDAS range, ped starts boys on Zithro for 5 days and is now consulting w/ Latimer on further treatment. TWIN B: Current age 7 (May 2007) > Tested positive for active strep and was put on antibiotics. > Tics were not noticed until June then he started with a swishing noise and pushing hair up in front. > 7/07 – mentioned to Ped at 4yr check-up > Tics gradually go away over next few months. > Focus mainly goes to twin brother since his issues are very noticeable and dramatic. > 10/09 - Tests positive for H1N1 – gets secondary infection (antibiotics are given) > 3/10 – Starts finger sniffing, and swishing noise with mouth, continued bedwetting, extreme fear of the dark, very hard on himself, calls himself stupid and says he can’t do anything, extremely sensitive to any criticism or when he gets in trouble, can’t stand certain textures, can’t stand anything wet on hands, can’t stand tags, etc. > 4/10 – dx with Strep begins antibiotics > Tics remain absent for summer, OCD/SPD behaviors still remain but not nearly as bad (remaining behaviors: bedwetting, extreme sensitivity, extreme fear of the dark, etc. > 10/10 – exposed to strep - took for rapid strep test, result neg. no antibiotic given. Finger sniffing returns and is a daily occurrence, start smelling everything, would touch different objects just so he could smell it on fingers. OCD/SPD behaviors begin to rise. > 1/10/11 – Contracted Flu (Type A) confirmed by culture > 1/20/11 – Given Zithromax for secondary infection from Flu. > 2/11 – 99% Tic reduction and OCD almost gone. > 3/1/11 – New vocal tics emerge and these new vocal tics happen every 3 seconds (clicking noise and throat clear with a hum). Finger sniffing increases and OCD behaviors are back. Excessive crying on the rise and bedwetting accident occurs. Request the results from Cunningham to see what next steps should be… > RESULTS FROM CUNNINGHAM: CAM K II – 149 ANTI-LYSO – 1000 ANTI-TUBULIN – 1000 ANTI-DOP 1 – 2000 ANTI-DOP 2 – 4000 > Cunningham Results indicate PANDAS range, ped starts boys on Zithro for 5 days and is now consulting w/ Latimer on further treatment. Edited March 16, 2011 by vermontmoms Link to comment Share on other sites More sharing options...
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