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I am writing about my 8 year old son Our son. He has PANDAS that was officially diagnosed by his DAN doctor (Defeat Autism Now) in August of this year.

On 3-3-08 he woke up with a 102 fever, and no other symptoms. I thought it was a viral infection as since he was 2 yrs. old he would develop a fever for 4-5 days without other symptoms. When we would go to the doctor I was always told a viral infection was the culprit, so I thought that was what we were dealing with this time as well. By 3-8-08 the fever was still around 102, so we went to his pediatrician who said a "viral infection". His fever broke on 3-10, so I thought everything was fine, but on 3-12 his fever spiked again, he c/o a sore throat,and he had the classic scarlett rash. On 3-13 we got the strep diagnosis, and he was put on Amoxicillan 500 mg bid for 10 days. This was the first time he's ever officially been diagnosed with strep. I wonder now though if all those past "viral infections" were just asymptomatic strep. Other than many ear infections before turning 1 yr. old, and an occasional sinus infection, he's always been very healthy.

On 3-15-08 our son changed overnight it seems. He began to do this forceful neck/head jerk. It looked as if someone had punched him in the chin. Sometimes, it would be repetitive up to 5 jerks at once. When we asked him why he was doing this, he said he couldn't control it, and that his neck tingled. He said when the jerk happened, it helped the tingling sensation for awhile.

He also had terrible separation anxiety. He came to me and his Dad's room many nights. We asked him what was going on and he would always say he had a bad dream, but couldn't give us details of what he dreamed about. He had a few days of some mild OCD (combing his hair several times as he didn't want a hair out of place, making a point to say he HAD to wash his hands after feeding his hermit crabs), both he'd done countless time but never the the degree he took with these times. He also complained alot about various areas of pain (his legs and feet mostly), but his doctor (pediatrician) couldn't find any problems.

He was also VERY sensitive, and would get upset over trivial things. Our main problem with this was with his schoolwork. He would become so upset and angry he would yell and cry almost in a rage, which is totally out of character for him. The jerk or "tic" was the main problem because he was doing this so frequently I was worried he would develop a whiplash type pain, but so far the tic is still going strong and he only still c/o the tingling sensation. He has also had other tics through this period,but they seem to change after 3-4 wks to a new movement. Everything so far has been motor tics (popping his knuckles and jaw, twirling his hair, licking and rolling his lips). No sensory tics have occured at this point.

Treatment so far has mainly been with meds. He was on several acute antibiotics. Initially the Amoxicillin, which did nothing. Then Keflex with no change. A pediatric neurologist saw him before the DAN, and mentioned PANDAS, but also thought it could be Tourettes. He gave him Tenex to take for 4 wks up to 2 mg daily. It improved the tic 80%, but I did not want to mask the tic, but find out it's cause. We tried a 6 wk trial of Pen VK 250mg BID, and 2 seperate rounds of Zithromax (10 wks in total) without help. He developed a sinus/ear infection over the summer, and was put on Suprax for 10 days. This was the first time since the Tenex we saw real improvement, but we were told this was one you couldn't take prophylactically.

He also took a prednisone taper over the summer. It also helped alot, but only for a week to two after he finished it. We are now on Keflex 500mg BID for prophylactic measures, and this had shown dramatic improvement up until Thanksgiving as he caught a 48 hr. stomach virus, and his tic is so much worse. He was put on Keflex in August after getting another strep infection once returning to school after summer break. He wasn't on anything but supplements at that time as the DAN thought since he didn't respond to the Zithromax, he didn't have PANDAS.

He takes several supplements as well per the DAN's instructions to include: fish oil, magnesium, selenium, B6, and a probiotic. Again, before this stomach bug, he was doing really well. Still not tic free, but very few. His seperation anxiety is much better, although he did come to my room one night during the virus because "he couldn't sleep". His behavior is doing well. No problems with the rage I saw early on, mainly sensitivity issues if any. Amazing how a 48 stomach bug can set you back so quickly.

Son has not had a lot of testing other than several throat swabs and cultures. He's had two sets of strep titers drawn, but both were "normal". His first set was on 3-19 at the onset of symptoms. Then his ASO was 56, and the Anti-DNase was less than 50. Next set was on 7-15-08. Only the AntiDNase was drawn then, and it had elevated some at 168, but again still normal with the cutoff at 200. His WBC was on the border of normal in July as well. His DAN felt that indicated his immune system was low. He also had a positive Epstein Barr test with that set of labs, which his DAN said indicated he had Mono in the past. This was also rare because of our son's age.

All this above descibes my firstborn since we got on this PANDAS train, but I'd like to take a minute to tell how is was before, and the way I long for it to be again. Son has always been the "good child". He had always been such a sweet, polite, and mild mannered little boy. Occasionally, he would be somewhat sensitive, but I was that way as I child and felt he got that from me. He has always, and still does, done well in school (straight A's). He loved sports, still does, and does really well in the three he plays. He's still that same little boy in many ways, but now he seems almost distant at times, like he's out of focus. And, then there are times he is not himself at all, and I know it's all related to the PANDAS, because the behavior always coincides with his tic worsening.

PANDAS has changed our family forever. I've spent countless hours researching, and reading to educate myself as much as I can. I've neglected my husband, 3 yr old daughter, myself, and our home through all of this because every spare minute I have I reading on the computer, or over notes. I worry often when he's at school that someone is making fun of him, and I know that would crush him. We've depleted what little extra saving we had to pay for the various meds,supplements, tests, and doctors visits.

However, I feel so fortunate and blessed that this illness is not terminal. I tell myself this every day. I also know from speaking to other parents with children like our son, that it could be worse. We have a doctor who has been very supportive and open-minded. He was responding wonderfully to the Keflex until recently. It's extremely hard to see him go back to the way it was in the beginning with the tic since this virus. I'm hoping and praying we'll see improvement soon. I do feel however, it is imperative he gets IVIG before turning 10 yrs. old. I want and am willing to do whatever is needed to end his PANDAS. The wait, watch, and he should outgrow it is not good enough for me.

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