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Everything posted by FLmom

  1. I have a 13 year old son who I strongly believe has PANS or Pandas. His major onset was last August following a family vacation during which he had a sore throat most of the trip. The day after we arrived home he began having anxiety attacks and major OCD. The OCD has only exacerbated over the past year. Last fall, recognizing that this must be Pandas, I took him to a practice that was recommended by several with lyme. The PA ran lots of bloodwork on my son. His Anti-Strep O titer was only 10 (with a <150 as normal). But one band of lyme (41) came back reactive. He also had an elevated C4A. The PA concluded that strep wasn't an issue, but that the lyme was causing his OCD and prescribed amoxicillin. He took that for 6 weeks with no improvement. Last month I scheduled another appointment to ask if he could go on stronger antibiotics. The PA said that until he has passed through puberty (around 16) there was nothing stronger he could give him. ??? So I was left with just to hang on until then. A few weeks ago I started re researching Pandas since I couldn't get out of my mind his sudden onset following a sore throat. It was then that I came across all the other symptoms, besides OCD, that goes along with Pandas. My son has about all of them, other than tics. His decline in math has been a huge issue that has baffled me. He is working about 2 years below his class, and is still not doing well. He told me last week he can't add or subtract anymore. He also has had major sound sensitivities since he was about 8. He can't tolerate the sounds of crayons coloring or pencils without freaking out. The following Monday morning I called Dr. Murphy's office, but was told she had no openings until April. Later that week I called Dr. K's office in Chicago and I have a phone consultation set up for Monday. So that I have some more knowledge before I talk with him, I am wondering if others has seen these symptoms with just the one Lyme band reactive. My son has no physical symptoms of lyme. We live in Florida, which is not a high risk place, but he did spend a week the two previous summers in NY and VT. We have no recollection of any tic bite. His Vit D was also low and he had low Absolute Lymphocytes. He was positive for a past infection of Herpes 6, which I was told means he had Roseola at one point. And he was positive for two copies of the MTHFR mutation. At first I was so excited to attribute this to Pandas--I thought get him the IvIg and get my son back. But after reading these forums I am realizing it is not so easy. If anyone has had any similar bloodwork, I'd love to hear their experiences. Ginger
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