An Update on Our Son: PANDAS

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Our son is still very up and down and we don’t know how long this will last or where we’ll be when with his recovery. Most of the OCD and physical tics are gone the majority of the time. He still is quite emotionally labile and sometimes gets physical and aggressive with Chris and I, but it does seem less frequent and with less intensity.

He continues to be anxious and to suffer a lot separation anxiety (mostly with me) throughout the day and at bedtime. I have been able to take him out of the house for more activities the last couple weeks! I think the reduction of OCD fears has made it so much easier as it significantly brought down his overall anxiety, it also means we don’t have to be at the house for every hand-washing and meal time most days.

His handwriting still suffers and he’s holding steady academically but not making any gains (he’s still above grade level, so I feel fortunate not to worry about this at all). I was amazed that he took standardized tests for 2 hours yesterday at school with no problem… I think that would be difficult for any 7 year old!

Our next step will be to continue repairing his immune system. He still tests negative for strep but has elevated levels of the antibodies in his blood, so until we reduce the inflammation in his body and get those antibodies gone we’ll be dealing with some level of PANDAS behavior.

Many people have found that T&A (Tonsil and Adenoid) removal has helped their kids get past the residual behaviors they have and believe it prevents future ‘flare ups’ of PANDAS. Apparently tonsils are spongy tissue that are pretty yucky according to all the docs we’ve seen. They could be hiding strep or other infections that are making it hard for his immune system to get back to normal. We’re meeting with ENT surgeons this Friday and next week to discuss a tonsillectomy. It may help him recover further and prevent many future strep infections. And I’m still seeing an ENT to see if my health may be affecting him as I seem to catch everything that gets near me.

So, that’s where we are. Life on hold, future plans impossible. Hopefully, headed the right direction but truthfully it is hard to tell.

Much love and happy wishes,
Ali

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