We had a review appointment with Sheena's Neurologist yesterday - always an anxiety-ridden experience. The only good news was that there was no evidence of Hypsarrythmia on her EEG last week. That is the irregular brain-waves that were stopping her development. A couple of spasms were noted when she was sleeping, but he doesn't think they should cause any damage. Those 20 second seizures have stopped since she's been on a slightly higher dose of Epilim, so fingers crossed that they are nipped in the bud.
He repeated his expectation that it will take her another 6 months before she gets back to the way she was. I am thinking of it as rehab. Her tone has gone backward since she's been on the Prednisolone, which we weren't aware of as a side effect. Not a good thing for a baby with Hypotonia in the first place. Otherwise, the long term outlook is far from great. Infantile Spasms should not have impacted on her motor development, but her intellect is another thing. Of course there is no crystal ball, but the combination of West Syndrome and Down Syndrome is not promising in that regard. Of course little Sheena is exceptional, so she might be the exception.
It will still be another two weeks before she is weaned from the Pred. The sooner the better, but at least it has done its job. It would have been horrendous if she'd gone through all the horrid side effects for nothing. The bloating will come down soon enough.
Sheena has taken to napping in the beanbag. I had her lying in it looking out the atrium window, listening to Mozart (if you don't mind), and she dosed off. Very cute.
3 comments:
What a cutie! Looks comfy to me! Beanbags are the best!
AWWWW.....I wish I had a bean bag like that to snuggle in!!!! she is so sweet!
Glad to hear you did get some bit of good news at the appt!
She looks comfy in her bean bag chair!
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