Her caelyn (her_caelyn) wrote in fragile_x,
Her caelyn
her_caelyn
fragile_x

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Changing diagnosis

I wish people would make up their minds. When my ex first had my son tested his diagnosis was tetrasomy p-18. It was in some paperwork, and then somehow some paperwork a few years later said fragile x syndrome. Now his doctor says he does not have fragile x that he has tetrasomy p-18. I am frustrated that people seem to just keep changing their minds about him like its not a big deal. My parents and I are dealing with some serious behavioral issues with him that have gotten worse over the last 2 months. He has started counseling, and been put on medications for bed wetting and for adhd within the last 2 weeks and his behavior has gone from extremely bad to so bad its like nothing I have ever seen in a kid before, and very physically agressive toward adults. The doctor told my parents that this would get worse as he gets older. He is 10 right now and my dad use to be able to control him somewhat but now he isnt even wanting to listen to him.

I dont know what to do to help him. I feel so helpless because none of the medical stuff is up to me, legally my parents have guardianship of him and soon will have full custody. It really is what is best for him and his brother at this time but it is difficult to not have any say in big decisions like medications or if I get a say to not have anyone listen to me anyway. I just dont know what to do. Sorry guess I just needed to vent somewhere.

Oh and is fragile x a "catch-all phrase" covering tetrasomy p-18 too? That is what someone was telling me today but I dont know.
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