The worst is yet to come

We heard that Alex wasn’t doing well at his new home, and went to visit him last weekend. It was nothing short of a nightmare. He’s having the roughest time I’ve seen since he left us. We brought up some hash, which he took happily, and the first night we were there (Friday), it put him to sleep for 13 hours. This is a good thing, as he hadn’t slept at all the prior night.

Unfortunately, on Saturday we didn’t want to knock him out, so we gave a much smaller dose and didn’t see any real improvement. On Sunday, we didn’t even bother trying the hash. He woke up so happy we were sure he was going to be fine for at least a little while. Within an hour of waking up, he was completely out of control, and we left in tears.

Haldol – dangerous, but it helped

We recently got his new psychologist to stop the Haldol – it’s very dangerous at the high dose he was on, even if it calms him down. Unfortunately, his problems are getting bad again:

Alex continues to have a really hard time. He has been placed in multiple physical restraints to prevent SIB. He has started the new meds that [his psychiatrist] ordered but they have shown no effect as yet. I have called her this AM to keep her updated. She is going to order Tylenol 3 with codeine every 4 hours while awake.

(SIB means “self-injurious behavior”)

We’ve been down this road. His behavior will not be affected by any dose of medication that’s considered safe. I don’t know why, but he’s always needed more medication than most adults. At one of his ER visits, the doctor told us nobody (who hadn’t seen it themselves) would ever believe an adult, let alone a seventy-pound child, could stay awake and fighting with the doses of Haldol and Ativan he’d been given.

We have told them it’s time to try Marinol again, but it’s not available in a pure liquid form, and they’re not allowed to break open the capsules to get the liquid out — apparently the pharmacy is claiming this is a dangerous procedure.

We just don’t know how to help our baby at this point. The solution is right in front of us and we can’t use it. The one medication that’s helped him is hard to get and won’t be administered by a state facility. We don’t even know who to talk to to try and force the issue.

OCTA

It probably won’t happen this year, but if you want to help our cause, we’re trying to get attention on the Oregon Cannabis Tax Act. Read a bit more about how the Oregon Cannabis Tax Act could help kids like Alex.

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2 Responses to The worst is yet to come

  1. Pingback: Clarifications, answers, and where we go from here « Alex's Story

  2. Ralph Antonelli says:

    There is a school in MA that has enormous successs in managing children and young adults with serious SIB. Please feel free to contact me for further information.

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