23 month old, diagnosed with Epilepsy and lack of white matter in left front temporal lobe. 25+ Absence seizures daily

Carrie - posted on 06/24/2013 ( no moms have responded yet )

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My daughter is 23 mos. old. She has faced many struggles and more continue. When she was born she had TEF/EA, her esophagus was attached to her lungs not her stomach. She had surgery to repair it when she was two days old and then a second surgery at a week old, due to an un-related medical mistake. At three months we found out that she had pyloric stenosis as well, so she had another surgery. At four months she left the NICU with a NJ tube, an apnea monitor, a feeding pump, and a list of prescription drugs. At six months she had a feeding tube (button) surgery and a nissen wrap surgery. We were surgery free for ten months, and then she had an esophagoscopy and a tracheoscopy to look for strictures. Luckily there were none! We thought that we were done.

She has been in EI since she was seven months old, PT, OT, and Speech. She can walk, climb, go up and down stairs and get almost anything that she wants. Her fine motor is not as great and her speech is very delayed. This past March at 18 mos. she had ear tubes surgery, and started babbling for the first time. We cried. We thought it was over, catch her up and we'd be on our way. We were wrong.

I noticed last Fall that she was self-stimulating, at first I thought it was seizures, but our Pediatrician told us that you couldn't break a child from a seizure and you could get our gorgeous girl away from her new past time. So I didn't worry about it. We moved cross country, got set up in a new EI program and kept on keeping on.

Then my husband and I noticed that she seemed to be spacing out a lot, and looking up to the ceiling a lot, lost for a moment and not focusing well. I brought it up to her New Pediatrician and she recommended that we see a Neurologist for an EEG. The EEG showed abnormalities, which meant that she has Epilepsy. I took her out of EI and got her in a therapy center. The diagnosis gutted us, yet again and yet again, we didn't really understand the depth of the problem yet.

Her MRI showed lack of white matter in her left front temporal lobe. Her Neurologist said that it was likely another birth defect, and not necessarily the source of her seizures He said that it's been since my second trimester and that while it would never get worse, she would always suffer from substantial cognitive delays. He said that our goal is for Independent living, teaching her to dress herself and feed herself. How can he say that when he hasn't ever examined her or spent anytime with our miracle. She makes strides each week, she is in OT 2x a week and Speech 2x a week and she is making progress. Our baby is a Miracle, but her Mommy needs help, advise, reassurance.

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