We brought Hannah home on Saturday afternoon. With the exception of anxiety and problems sleeping, she was doing really well.
Or so we thought. She is so uncomfortable to the point where she can’t get comfortable, cries out constantly, and just can’t be still. The only relief she has is when we give her chloral hydrate at night, and that is only because it knocks her out completely.
Is it the Klonopin/Ativan wean causing withdrawals? Could it be too much for her body right now? Maybe the docs didn’t really think this one through because hindsight tells me that we probably should have waited until her body had recovered from everything else going on.
Or is she is in real pain again? This time, not caused by constipation because she pooped twice today and has a soft belly. Maybe caused by something else?
It has been so horrible to see her in so much agony. She is still on the Ativan 0.5 mL four times a day, but I don’t think that is either enough or just bad timing because something else is going on.
We have to work on figuring this out tomorrow. I need to find out what harm there would be with putting her back on her normal dose of Klonopin at this point and holding off on any weaning so we can see where this pain and agitation is coming from. But is it too late at this point since she has been off Klonopin for a week and only on the ativan?!
We sprung her from the hospital because we assumed all of this agitation was from being cooped up in the hospital bed and unable to communicate with us. But since she has been home, she has become more agitated and uncomfortable.
I have yet to see any smiles since she has been home, and I miss that.
We need to figure this out ASAP, or I’m afraid we will be back in the ER again.
I’m so sorry to hear this, Carrie! 🙁
I know this sounds crazy, but Bertrand has been a 2 poop a day guy since starting his vitamin therapy. This is AMAZING given the amount of laxatives we had to push through him historically.
The two vitamins which helped his digestive tract the most vitamin A and vitamin B7. Certain AEDs (possibly keppra?) bind with biotin (vitamin B7). Biotin enables the body’s processing of the other B vitamins. (Deficiencies in the other B vitamins can lead to movement disorders, neuropathy, mood issues, etc.) Biotin also helps mucus glands to function–the intestines, throat, etc. have tons of these glands. Given that a lot of G-tube fed kids are particularly low on biotin, it may be worth checking out since it is water soluble.
I’ve got my fingers crossed for Hannah!
Lots of love!