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What does this all mean...Does all of these results/symptoms indicate

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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!!!





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…


CAM K II – 156



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…


CAM K II – 149

ANTI-LYSO – 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 by vermontmoms
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Did you mean to type 320? Does her (Dr. Cunningham) graph even go that high? Of ALL your results...that one stands out (in my opinion) the most.

Let us know what is discovered. On the other the history of strep and the behaviors all sound like PANDAS. Did you have ASO & Anti Dnase torres run?




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None of the docs have mentioned having Lyme tests done? Your twins seem so similar to my one twin dx with pandas but tested positive for Lyme and starting to suspect Bartonella. The antibiotic worked at reducing his tics but within time symtpoms would emerge again. not until the lyme treatment started that we saw more sustained progress..although we have a long ways to go.

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No...nothing has been said about Lyme testing. Although, I suggested it to our ped and she said it may be a good idea to get this done. She is aware of PANDAS but we are her first confirmed case; she is trying to contact Dr. L to see what steps we should take. I am going to call tomorrow and get new cultures done on the boys just to rule out strep with these new symptoms (especially in Twin B since he has never had vocal tics and now all of the sudden has two that are very freq). Do all their symptoms sound like PANDAS? Do you think Dr. L will think they are PANDAS cases?


Can anyone explain what the Anti-D1 does and how the values could translate into tics/OCD symptoms?


Thanks, our heads are spinning and just a little overwhelmed.



Ps. yes they did have all the strep/ASO titers done at the same time, I will get those results tomorrow from our Ped's office. At the time, the ped said all were w/in normal limits but I don't know what the actual values were.

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It certainly sounds like PANDAS. But so did ours. My little guy was classic, positive strep, all the symptoms. The Pandas doc did not even think he had Lyme, except that he had bouts of fatigue, although they only lasted an hour or two. he was never laid up in bed with extreme fatigue. And complained on and off about his feet hurting, so he had the joint pain. We thought that was a PANDAS symptom, but now realize it's probably related to the Lyme. So, I could't emphasize more how important ruling out Lyme and co-infections is. Bartonella's classic symptom I've learned is thoughts of harming oneself, which sounds like your guy had at one point. I'm not saying he has Lyme. But, we were shocked when our ds4 came back positive and thank god we caught it. It's good you have Dr. L. Also, if you post on the Lyme board, you'll get a ton of feedback on your situation I'm sure. Remember: Lyme testing through labs like LabCorp or Quest are useless. You need to test through a specialized lab, like Igenex. Most peds know nothing about this. But our son tested negative twice through Quest, then clearly positive through Igenex.


don't know how you're doing it with 2 having Pandas??? whewww.



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Thanks so much for your post! We will get them tested for Lyme. Twin A, the one with symptoms longer has joint pain almost every night. He has to have his back rubbed and his neck muscles are always so tense and tight. For a 7yr old you should not see this...his neck is also full of tension which we attributed to his severe torticolis from birth and his tics which are so tiring day after day. But it could be Lyme pain but we never thought of it this way.


Now about the negative feelings...this occur more freq then I put above but that was the first occurance. For example, tonight again he mentioned that he wish he were dead...it is so hard to hear this from such a small person. He had another huge meltdown/ragey attack tonight. It was horrible...uncontrollable crying, fetal position, rocking, hitting head, rapid neck movements, negative comments, total fixation on a comment and couldn't let it go, couldn't catch his breath, etc...etc...Twin B was also in tears; he kept saying over and over that his twin couldn't help it...it was an hour of pure pain! Finally they passed out from exhaustion...I attribute tonight's episode to the antibiotics that we started back up on Monday...it always brings out the exorcist behaviors. We are still way below Twin A's max levels that we saw on Augmentin but the Zithro still brings out all the bugs...


Now about dealing with 2 with PANDAS...it isn't always fun but at least we are learning why this is happening and are hopefully on our way to treatment and relief!

Thanks again,


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