My son, 10, was diagnosed with PANDAS on 3/24. We first noticed the facial tic on 3/1, but did not think anything of it. We thought he was just being a precocious 10 year old boy and rolling his eyes. When he started doing it more often, we thought it was an OCD issue, he has had little quirky things that he does since birth but then they go away after several weeks or a few months. Never anything that interfered with his daily living or school.
By 3/23 the tics were so bad he could not fall asleep that night. He also had developed a second facial tic. He would do one or the other and when asked about them said:
“I fee like I have to do it. If I don’t do it, I can’t stop thinking about doing it, until I do it. Then when I do it I feel better until I feel like I have to do it again”.
It took the doctor about 2 minutes to make the diagnosis. We have never even heard of PANDAS. She made an appointment for blood to be taken the next day, 3/26. We also saw our pediatrician on 3/25 for a quick strep test which came back negative and a overnight strep test which also came back negative.
The blood results which came back 3/31 were as follows: DNASE-B AB: 960; Anti-Streptolysis AB (ASO): 200; WBC: 3.6 (low); Hemoglobin 13.5 (low); Hematocrit 38.3 (low); MPV 8.3 (low); Glucose: 119 (high); Alkaline Phosphate: 254 (high). He also tested positive for some gene mutation that I have never heard of call the A1298BC, but negative for the C677T. I have no idea what this means.
On 3/31 she prescribed 10 days of Zithromyacin (he is allergic to penicillin). However, by the time 3/31 had rolled around his tics were barely noticeable already anyway, and he has also started with a vocal tic that sounded like the sound a guinea pig makes. So I do not know if the antibiotics helped with the tics, since they were mostly gone already, but he did seem to be a little more sunny in his disposition (he had been very clingy and moody for several weeks, which is actually nothing new, it was just worse than usual.)
My son has had language based learning issues from birth. Though he has several characteristics of Autism/Asperger’s/PDD, we are told that “he does not fit neatly into one box”. He currently receives speech and language services through the district and is classified as “learning disabled, other” and receives special education services. We had to fight tooth and nail for him to be classified, they wanted us to give him meds instead. He does have ADD, but we went down the meds road when he was 5-1/2 and it was not pleasant. He is not disruptive to anyone (he zones out), so currently he takes nothing for the ADD.
I should also tell you that he has had Scarlet Fever 4 times.
He had an MRI with and without contrast on 4/18 which came back normal.
Tonight we are going for a second opinion with another doctor, who is not on our plan, but he is supposed to be one of the finest pediatric neurologists in the country. I am hopeful he will be more knowledgeable than the doctor on our plan and offer up better information and treatment options. (She mentioned Immunoglobulin Therapy or Steroid injections?????)
I would be happy to give you the doctors’ names if you e-mail me privately.
Many thanks in advance for any thoughts, advice, support.
