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  1. 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
  2. So my diagnosis is autoimmune encephalitis. I was only approved for 5 months of ivig then I lose my insurance because of my age. It's been 5 months and it hasn't helped. It did help the dysautonomia which is believe to be autoimmune but that's about it. My bladder, ocd, and fatigue continue to get worse and I am getting more disabled and frustrated. The only people who will see me locally about ocd are psychiatrists, I recently saw one and he dismissed all my diseases and treated me like a healthy person. His plan was to put me in psychiatric inpatient, detox me off all my sleep medications because they are "sedating", then feed me giant doses of stimulants because "that's how you treat chronic fatigue". He didn't understand that chronic fatigue syndrome is an actual disease, most likely autoimmune, very complex, and stimulants DON'T HELP, and the most important factor of this disease is getting sleep. He told me that it didn't matter if I didn't sleep, "people can run off of very little sleep", well I can't, my fatigue is intense and deathlike, most days it's hard to get out of bed. Back to the AE, ivig hasn't helped. The ocd continues to get worse and worse. I got botox for my bladder (IC) and it didn't help. I'm being tortured alive by the ocd and bladder stuff and the fatigue keeps me from having any life. Just confused and perplexed I REALLY thought this was going to help everything, I was 100% convinced. It was very hard too, my infusions were 2 days in a row, 8 hours long, and twice a month because the doctors were scared of side effects and NO LOCAL DOCTOR WOULD HELP so they slowed my infusion rate a lot. The was extremely difficult because the IC has me getting up constantly to the bathroom and I had ocd the entire time, raging. Don't know what to do. I'm tired of trying things, I'm sick of EVERYTHING, I've tried things for 12 years, and nothing helps except my sleep medication, I'm sick of it all; some of my friends just quit trying stuff all together but I can't because of the ocd and bladder.
  3. The AE alliance has created a search page to locate a physician. The search can be filtered, based on specific diagnosis or even antibody-negative AE~~~ something it really seems like some of most severely affected children/adults on this forum may have. You can even filter by adult or child patient. Maybe this will help someone find a new place to get help for their loved one (or themselves!) https://aealliance.org/ae-clinicians-network-new-resource/
  4. So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication I've ever taken. We saw an: immunologist, and rheumatologist and they refused to take on my case. Then I was referred to 2 different neuro's and they both refused to see me. They all say they've never heard of AE and can't help and all seem scared and worried. I contacted doctors at nyu and they don't know anyone in the south except duke which is 9 hours away. I contact AE alliance and they said there's nobody in my area. Insurance will only do LOCAL IVIG AT LOCAL HOSPITAL. My bladder and ocd are getting worse, they feed off of each other. My mind is now telling me that all these things are bad there's a huge list of things I can't do according to ocd so it leaves me with essentially nothing to do. I feel like I can't go on even another 6 months to try treatment, it's just that bad. Bladder keeps me from having any enjoyment or sleep or rest in life. Insurance has denied botox treatment and I've tried everything else for IC. OCD latches onto everything I enjoy and tries to destroy it, I can't even watch t.v. or movies so there's nothign I can do but sit in a chair all day and lie in bed, can't listen to music either, it's out of control. Have therapy helped anyone? My psychologist is great but nothing has helped with ocd in past 5 years that we've tried.
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