Some of Sheena's test results have come back, and unfortunately, they've found that she has epilepsy. We go back to see the Pead on Thursday.
I can only hope that she responds really well to anti-convulsant drugs. She has never had a grand-mal (as far as I know), but I have observed rapid blinking, along with slight lip-smacking at the same time. It is pretty subtle, and if I had not been looking for problems because of her irritability, I might not have thought anything of it. We will get a lot more information about the extent of her epilepsy when we see the Doc, but I expect that it can be blamed for her reduced engagement over the last couple of months, and possibly her irritability. I feel completely vindicated for persisting with the Doc's that there was something not right. I'd started to worry that I was being hyper-vigilant in looking for medical answers.
I think a diagnosis of epilepsy in isolation for a 7 month old baby would have been pretty full-on, but that, along with her DS is VERY full-on. It is like when we were told that she had heart defects when she was 6 days old. If our baby did not have DS, we would have been completely freaked out by the heart-defects, but they seemed small compared to the DS diagnosis. That was just us. I have met other parents in the same boat, and they thought the DS was nothing compared to the heart defects.
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A couple of days after Meg was born she wasn't feeding well and spending along time asleep. Essentially she was shutting down and we really thought we were going to lose her. My wife spent 2 weeks with her in hospital while they tube fed her until she was strong enough to come home.
We were so overwhelmed with the fear she might die that the DS seemed almost insignificant by comparisson.
5 months later she had to have open heart surgery to correct heart defects and again we had to face the possibility of her death. She survived and has been thriving for the past 8 years, but at the time we couldn't be sure she would.
More than anything I wanted my little girl to live and grow up. After that, the DS seemed like an irrelevance
Sorry to hear she was diagnosed with epilepsy...at least you do have some answers now though and she can begin a treatment. and you should feel vindicated for realizing that something was not just quite right. I hope she responds well to those drugs.
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