Welcome to our Katie's website. We've created it to keep friends and family updated about her while we took her on a journey from Washington to UCLA to see if she is a candidate for surgery to help reduce her intractible seizures through her recovery process from the surgery.
She was successful and had her surgery on 22 NOV 2011!
We had a normal pregnancy but a very difficult labor. But after an emergency C-section, our beautiful daughter, Katie Jeanne was born. All her tests came back good and we were able to leave the hospital early.
On Monday, April 28th 2008, we started to notice unusual jerking movements in Katie that lasted 5-7 seconds. On Tuesday they continued, so my husband, Brian, and I discussed it and decided we would ask the doctor at Katie’s one month visit the next day (April 30th). The seizures continued, but we could not get them on tape. Katie’s doctor’s visit went well and he was impressed with how well she was growing and responding. When asked about the seizures – he said not to worry, that babies had immature neuro systems. We were assured immediately. However, the next day, they were getting stronger, longer, and more often. I showed my twin brother, Michael, and he thought they looked unusual too, not normal. Friday, May 2, I decided to start documenting them when she had one at the 12am feeding and again at the 330am feeding.
By 10am she had 5 seizures, and I called the doctor. He told me she was fine and I was overreacting, but if I was that concerned, I should go to the Emergency Room (ER). I did not want to spend $150 on an ER visit, and be sent home for nothing, so we did not go. At 11am she had another seizure and I noticed they were coming every 2 hours about, and again, longer and stronger. I watched for one at 2pm and was immensely relieved when the seizure did not come. However, at 345 she had one that lasted 40 seconds, then another one 353 that lasted 50 seconds, that was enough for me, all three of us headed straight to the ER.
Well to make a long story short, she spent 2 days in the ICU and 2 days of the normal pediatric ward while they ran numerous tests on her. Blood tests, CT scan, MRI scan, and EEG (another Brain scan). All weekend we kept hearing, ‘the tests confirm the CT scan’. This scared us, because we had been told on Friday night some very bad news about the CT scan. Possible moderate to severe disabilities and developmental impairments.
Monday, we were finally told what it could be. Aicardi's Syndrome (AS). They believed this because she had no Corpus Collosum, seizures, enlarged ventricles, abnormal brain formation, and cysts in her brain where matter should be. We took the news surprisingly well.
Before we could be released from the hospital, they took more blood work to see if she is missing her pituitary and thyroid glands (which all but one test have come back normal). We were able to go home from the hospital, with anti seizure medicine – phenobarbitul, but were back in the ER Tuesday morning due to more seizures. The neurologist scheduled us for more blood work to check her dosage levels. They upped her levels of phenol.
On Thursday, we received the official diagnosis when we went to the Neuro-optomologist. She has the lesions (lacaunae) on her right eye, however the good news is she does NOT have them on her left (which is a great blessing!!!). She continues to have seizures, and we know have her on two anti seizure meds, Pheno and Keppra. Despite these two meds, she is having 8-15 seizures a day, between the seizures and infantile spasms. So now it’s a waiting game for us. The doctor is concerned with the amount of seizures she started having so soon (4 weeks old) and is still having. It is all a waiting game for us. We love our daughter very much, and hope we are blessed with her for years to come. Thanks for taking the time to meet our little one.
Now here it is two and a half years later and Katie is a beautiful growing child plagued by intratible seizures. She an walk but has left side weakness. She does not talk, but she does verbalize and can sign more (which she uses for everything :)) On Aug 31st, we were told Katie is having 24 hour debilitating seizures and her chance for death is increased with the amount she is having. She also fears regression in Katie as well. Katie has four types of seizures, and we will look into anything is it means possibly having a reduction in seizures and her in our lives longer.
Katie- Valentine's Day!
February 14, 2013 4:12pmA friend, Alan Burger reached out to us, and reminded me how long it has been since I have updated Katie's page.
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