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I'm sorry to have to welcome you to the board, hon, but I'm glad you've found us! All of our kiddos have different special needs, but I think there is a lot that tends to be universal...the first of which is the shock and grief that comes with any new diagnosis. Many hugs to you! We're here for any venting and support you need.
My 2 year old son was born with a virus called CMV, and he is deaf with global delays and classified "high risk" for learning disabilities and apraxias as he gets older; we know there was calcification in his brain due to the virus and it's impossible to tell ahead of time what all that will result in. We have managed to avoid seizures so far, though they warned us they were a possibility. My mother has epilepsy and has managed to find the right medication that has left her seizure free for a number of years now! I hope that they are able to help your daughter become seizure free, or close to it. I think we've had someone else on here whose child had seizures/epilepsy?
Well I will go into more detail now, lol I was too tired last night. She was orn at 36 weeks weighing 4 lbs 4ozs. They told me she had IUGR, which was caused by a single umbilical artery. At 2 weeks they found a murmur and sent us for an echo at that time they found an ASD and a VSD. At 2 months she was admitted to the PICU with CHF from her ASD, but we learned her vsd had closed. Fast forward almost 2 years and we have her cath lab surgury schedualed so she wil be as "normal" as anyone would be soon or so I thought.
On saturday night she had been fine all day but she had been on a rocking toy for a long time so i wen to pick her up and she was byrning up. I gave her tylenol and she threw it up i thought it was because she reall hates the stuff. But i cleaned her me and the floor up and got her to sleep. At about 3 she woke up screaming bloody murder (now we think that was the first siezure she had) I gave her more tylenol and she wentto sleep on me. Not an hour later she woke up siezing. I took her to the ER and they told me it was most likely a febril siezure stop her meds (augmentan) and keep tylenol in her. hour later siezure #2 or 3. Admitted to local hospital. After siezure #3, 4, 5, they finally gave her adavan to stop them and she finally sleep and we got transfered to a bigger hospital. They did a EEG on monday morning and found abnormalities is the right occipital and left temporal regions. The sent us home on dilantine and something called diastat. She is still approved for her heart to get fixed so thats great. but med time ill be back