We didn't see an end to her seizures on the Nitrazepam, we saw a what seems like a reduction with the combination Nitraz/Vigabatrin but I can't say she's been seizure free.
It looks like ACTH is the next thing on the agenda. Janna will be admitted to BCCH next week. We're waiting on a phone call from Neurology to find out when we're to head in.
Because of the risk of some serious side effects I told them I'd rather be admitted with her so she can be monitored closely. This will be a "low dose" ACTH course and if she tolerates it after the first few doses we'll be released and continue with it to see if we see a break in seizure activity. If that doesn't work we'll go to regular dose ACTH and if that doesn't work, on to the next thing although I'm not sure what that will be.
On a positive note, she has gone back to lifting her head and she's much less floppy now than she was with the pheno/nitraz/vig combo so we're seeing more movement out of her.
I have this love/hate relationship with her NG tube. She coughs and gags on it quite a bit and I know it makes her uncomfortable but it's the only way to get nutrition into her at the moment. She has gained weight, she's now at 12lbs 8oz and on track for weight gain. Our G-tube surgery consult is on Feb 3rd and I still wince when I think of her with a G-tube and worry about how well she'll be able to tolerate it, after surgery pain etc. I know she needs it right now so I'll get over my own issues with it and move on.
I do find I'm giving her more belly tickles and kisses now that I know there is a countdown to the surgery. I know I'm going to miss that beautiful little tubeless belly.
And onward we trod. Waiting for that call back from Neuro.
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