Hi Chemar, thanks so much for the response.
She had a follow up blood test today. The dr ordered another CBC as well as a test for reticulocytes. Unfortunately I won’t get the results for at least two weeks as her dr is quite busy. I’ve read quite a bit that tics can be connected to immunity so I don’t think this can be a coincidence.
She had been doing so well I honestly thought the worst was over, but watching her making faces at dinner last night was difficult.
I remember when this first started sometime at the end of January. I asked her what she was doing with her eyes. She said, yeah I know. I said, well stop doing it. She said, I can’t stop doing it. (She kept darting her eyes to the side). After much googling I discovered that it was in fact a tic and also that some kids do very well at controlling tics. So I suggested to her, try raising your eyebrows instead of darting your eyes to the side. A few days later she told me it didn’t work and “now I can’t stop raising my eyebrows”. I felt gutted.
She’s been on a gluten free diet since February 20. She didn’t immediately get better like I’ve been reading with some, but encouragingly others have reported it took some time to improve. The one thing I’ve been wondering about is if her spleen has been affected by gluten (I’ve read gluten is very damaging to the spleen in celiacs). If that’s the case, her blood count would be affected.
Like all of you, I just want this to go away. If anyone out there has any comments to share, please do.