Now that we are home the plan is to keep her on the zonegran and B6. Hopefully, she won't have any more seizures - but I guess they do tend to come back in a large percentage of patients. And because her EEG was not normal, even after the seizures stopped, they are still considering the ACTH treatment or possibly surgery. We are working with the doctors to do what is best for Marleigh in the long-term. If these drugs stop the seizures but she will still have a lot of problems later in life we will want to consider the other options.
Keith and Marleigh hanging out in our hospital room.
The plan right now is:
1. Do a follow-up appointment in 3 or 4 weeks for a "Snap-shot EEG" which is a shorter brain scan, so they won't have to glue on the electrodes. If her brain waves are still showing Infantile Spasm diagnosis, even if no seizures are present, then we'll start the ACTH therapy.
2. If she continues to be seizure free and the brain scan looks good but she is falling behind developmentally, then we'll do the ACTH. Because the Zonegran may be slowing her down, due to the drowsiness side-effect.
3. If the seizures come back at any time, we'll start the ACTH therapy.
4. If ACTH therapy does not work, then we are looking at brain surgery. It sounds like they have the best results when the child is close to 1 year old. This is part of the reason that they want to do the ACTH sooner rather than later - I guess it is about a 3 months process, so they would want to have time to see if it was effective and still be able to do surgery before she is 1. Surgery may involve us getting a second opinion at John's Hopkins - so prepping for it could take months.
In the meantime, we are thrilled because we are seeing a lot of smiles from her!!
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2 comments:
my first blogging ever, but seeing pictures of mariegh and hearing your GOOD news gives me a new flash of boldness! she is very very very cute and gives the impression of going to be actually just very very fine thank you very much and not the impression of a troubled or sick baby, which is hard to pull off with eeg leads glued to one's head. this is likely only some preparation for some futuristic hair treatments that we can only imagine and will surpass even the old boomerang perms. big hugs and lots of love to your whole georgeous family and lets try to catch up on phone this weekend. love, ang
This is great news !! I have all the best hopes, I hope she continues to respond well to the meds.
Big Hugs,
Casey
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