Friday, August 10, 2007

My sweet Kendal

Kendal's 2nd EEG

Kendal's puffiest, I think

Kendal loves bike rides so we went often at night in June and July when it cooled off.

Apparently I have generated some concern and interest in my little Kendal. I will try to remember it all. Here is the story: Late March of this year Kendal started doing this weird jerky thing. It started out just once in a week or so, but it increased in frequency and intensity. I got her on our video camera doing it a few times and took it to my doc here in Heber. He had no idea and sent me to Primary Children's. We got into a neurologist there after about 2 weeks from when the jerks started. He saw the video and we did an EEG that day to measure her brain patterns. They came back as definately seizure patterns, although a couple of different kinds combined. Kendal was put on a drug we sprinkle in her food called Topamax that is just an anti-convulsant. By this time, she was having around 12 seizures a day. We slowly increased the Topamax because a full dose at 22 months old has some bad side effects. After a few weeks the seizures went down to about 3 or 4 a day. At this time, I realized that her speech was slowly regressing. She wasn't saying words that she used to. She never was a great talker, about 30 words or so. She turned 2 in May and I kept telling the nuerologist that her speech was going away. They did another EEG, oh yeah, she had an MRI in April that ruled out anything anatomically wrong with her brain. The 2nd EEG showed crazy brain activity still, even though the seizures were decreasing to a few a day. The neurologist finally decided after that EEG and having Kendal not say ANYTHING for a week to do something more aggresive. On June 8th we started a drug therapy called ACTH, it is a corticotropin drug. Matt and I had to give her injections every night and every morning. It was supposed to be a 5 week therapy if she responded to the ACTH. We had to increase the amount of ACTH we gave her a few times because she was still having seizures every few days. The ACTH has nasty side effects also. Kendal's blood pressure had to be monitored, because if it was too high we couldn't give her the injections for that day. So we made trips to the ER here in Heber every night and every morning for about 7 weeks. We had to totally cut ANY sodium out of her diet and keep her out of the heat because that made her blood pressure rocket. Her highest BP was 149/98. ACTH is also an immunosuppresant so we couldn't take her anywhere.

On June 29th we upped her ACTH again and July 2nd was her last seizure so far. I hope they stay way forever. Kendal was on the ACTH for 7 weeks. She had her last shot on July 27th. She still takes the Topamax and still isn't talking. She is babbling like a 1 year old though and the docs think when the ACTH gets out of her system she will start talking again. We will see! During the ACTH therapy other stuff in her body was happening. She passed a bunch of small kidney stones, and her Potassium levels in her body are all messed up. We have been giving her oral Pot because it is a critical element in our bodies that runs sodium/pot pumps that work every cell in our bodies. We have been monitoring her pot levels every week with blood draws.

The ACTH is also an appetite stimulant and it acts like a steriod and makes you puff up and retain water, which of course, messes up your blood pressure. It is a vicious circle. Anyway, Kendal only gained 5 pounds during all this, which doesn't seem like alot, but that is like me gaining 32 pounds in 5 weeks. Her clothes didn't fit for a while, she had to wear Kelsey's. Her feet were too fat for any shoes (it was a good thing we couldn't go outside!), and she balloned up. She is on her way back down now, although some of it is just plain chubbiness from wanting to eat constantly. During the peak of the ACTH, she would sleep, cry, or stand by her high chair waiting for food!

Kelsey has been great through the whole thing. She was my tech every morning with alcohol wipes and syringes for Kendal's shots. She is such a good big sister. Anyway, maybe that will answer some of your questions. We get to go to Primary's again on Aug 16th and the speech therapist comes again that day. Hopefully we will have good news.


Anonymous said...

Wow Rachel, reading it in detail makes me realize what your little family has been going through. I kept hearing bits and pieces of it, but never heard it in all detail. You were so good not to worry any of us when we asked. I would have had emotional break downs if were in your shoes. You're a strong woman. I sure hope everything turns out ok for little Kendal and what a wonderful older sister she has. Kelsey has been such a tropper and just kinda gone along with the ride. Keep us updated on the situation. Thinking of you guys!

Anonymous said...

P.S. Her eyes are GORGEOUS!

Rachel said...

Thanks Amanda, be grateful you got the condensed version! Just pray for her.

Brittany said...

She looks like she is feeling a little better. I am so sorry that you had to go through all this! Our thoughts and prayers are with you always!

Rachel said...

Thanks a ton Brittany. You are so sweet.

TORI said...

It's so crazy to see the pics of Kendal before the ACTH! I forgot what she looked like before.


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