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Hello, mamas (and dads, and grandparents, etc!). I haven't posted anything for a long time, possibly because I haven't seen any new hope, any doctor that is willing to help, and our funds to travel to our doc have run out. Our most profoundly affected child (15) has continued to be super irritable and moody. She has been officially diagnosed with bipolar, asperger's (asd) conduct disorder at best, borderline personality disorder at worst. She has been out of the psychiatric hospital for 2 days, and as if that wasn't enough, my ds11 has now been in a flare for at least 2 months with 4 weeks on Zithro. This time I am not seeing him come back to us, even on zithro. Poor baby girl, dd7, is the youngest, who at this point only deals with phobias, "monsters" but no anger issues. So here is my question....we have an appt for my dd15 with a rheumatologist/neuro who is on the autoimmune alliance's website. He has worked with this a lot, apparently. I know these kiddos are dealing with brain inflammation. Dd15 had a lumbar puncture with a high opening pressure, but neuro didn't bother to test for any antibodies even though I asked him to. Dd15 and both others have had high thyroid antibodies, and we have a list as long as my arm of relatives with autoimmune issues, including one great aunt who had a very large goiter (makes me think Hashimoto's thyroiditis). This great aunt lived with her mother her entire life and was considered "not right" by family. My mom thought that she was just what they called "mentally retarded" back then, which could have been a lot of things. Anyway, I am looking for any other ideas on what to stress with the doctor so that we don't miss the mark with this one. This has got to be the answer. Since dd15 has been home from the hospital, she has been sleeping a lot. She was sleeping a lot before she went in, but we thought it was because of the antidepressant. She has been off of that for a while now and is still very fatigued. She went into the hospital because of a manic episode (I think brought on by the antidepressant). During that episode, she became obsessed with the phone and contacting several people that she didn't know. She took my phone before the password came on. When I tried to take it back (I couldn't let her continue to do what she was doing), she became very strong and relentless. When my husband walked in the door, she had me trapped by the hair, had kicked her brother in the groin and had kicked her little sister against the wall. Today, my son, who has lost his beautiful laugh, has had behavior very similar to dd15. He has screamed at me and yelled and verbally threatened just like her. Last night, when he was fairly calm, he lied about things that didn't even benefit him to lie about. This has been going on for some time. They both have had high tests for hhv6, etc. I know this is all due to inflammation. I just don't want to miss anything that will clue the dr in. Any other thoughts? thanks
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- autoimmune encephalitis
- irritability
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(and 3 more)
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