Trying to Stay Positive...

I wanted to thank everyone again for all the prayers!! I'm feeling much better about all of this - I can finally talk without breaking down - maybe a few tears but I can still carry on a conversation! We have a lot of unknowns at this point but I'm trying to focus on the positive. Right now Luella seems so normal, I would even say ahead of some developmental milestones. We laugh at her when daddy does something she doesn't like and she runs to mommy and says "Da-da naughty", or when she works so hard at putting a couple tinker toys together then proudly holds it up and says, "Got it!" Or when I ask her what her name is and she replies "Luella!" Or when I ask for a hug and she wraps her little arms around my neck and pats my back. We are soaking it all in and praying that we don't see all that begin to fade away at some point. (Luella turned 21 months on July 21.)

A lot of the really bad Dravet cases out there involve kids who have MANY seizures a day. Luella's new drug, Depakote, seems to be working really well. Next week I hope I can report that we went the entire month of July with only that ONE seizure on the way home from the Black Hills. That is awesome!!

One thing I am concerned about, is her twitching and jerking all night long. It has gotten bad. Our Mayo Dr. thought it might simply be because of her low iron causing Restless Legs. I hoping that's all it is but I'm concerned that it could be myoclonic seizures or something. It's more than just her legs that twitch. I don't know how the poor girl wakes up looking rested. I haven't been getting much sleep because I'm always watching the video monitor. Then one night last week as I was checking on Ryker before going to bed I noticed that his feet were constantly twitching too. I think I stood there for 10 minutes and didn't see his feet be still for more than 30 seconds. Maybe it is just low iron? Since then I haven't seen him do it as much as that one night. I just don't know. I'm taking him in next week to get his iron levels tested too. Luella has been on an iron supplement for 2 weeks, but it can take like 3 months for iron to build up again.

On August 8th we'll be back at Mayo. Luella will have a 24 hour EEG study. We are hoping to find out what is going on when she is sleeping.

I can't thank you enough for all the prayers! Keep them coming (I know you will)!!

A Diagnosis... Not Good

Just wanted to let you all know we got some news from Luella's doctor at Mayo on Monday evening. All of the outstanding genetics tests have come back and we found out that Luella has Dravet Syndrome. This is not exactly good news and I'm having a hard time with it. Dravet involves a SCN1A gene mutation and it is a spectrum disorder - meaning that there are very mild cases and very severe cases and many in-between. We don't know yet where Luella will end up on this spectrum. We do know it's not the mildest of cases and probably not the most severe (we hope). 

 

One of the hardest parts of all of this is now knowing that Luella will not simply outgrow her seizures. My hopes of having a "normal" life again are fading. Kids with Dravet usually have their first seizure before age one - usually because of a fever or illness (illness in Luella's case) and the seizures tend to get worse as time goes on. There is a whole list of secondary conditions that Dravet kids tend to have also and Luella has several - problems with automatic body functions such as temperature regulation, frequent UTIs, sleep disturbances, slow tooth eruption, and grinding teeth. Dravet kids sometimes see a regression of development after age 2 or 3 and some kids are just fine. I need to not think about the worse case scenario but we have a lot of questions as to what the future now holds for our little Luella.

 

www.Dravet.org has some great information but it also has lots of sad things to read. Last night I was up late reading things I probably shouldn't have and then had a awful time sleeping. Luella didn't sleep well - she was constantly tossing and turning and I was watching it all on her video monitor, scared that she was going to have a seizure or something. Luella has been twitching A LOT in her sleep and it has gotten worse. We just returned from a weekend trip to the Black Hills and Luella slept with me several of the mornings when she woke early and I felt every single one of those twitches! She will be doing a 24hr EEG at Mayo in August so they can see what she is doing and find out what is happening.

 

As far as the Ketogenic Diet goes - we will probably hold off starting that for now. We want to see what Luella's new "normal" is before starting and then we have questions as to how much the diet can help her now with the Dravet diagnosis. 

 

My last email was so positive about going two weeks without a seizure, now I feel like everything is upside down. On our way home on Sunday night Luella did have another seizure - so we made it 2 1/2 weeks, which is still good news - the Depakote seems to be helping. The seizure on Sunday was probably due to the heat.

 

I'm sorry I won't be able to talk about all of this for awhile. I'm having a really hard time with it - can't really say "Dravet" with out breaking down. So if you see me please don't ask me any more details for now. Hopefully I'll be able to talk more later. I know that I just need to trust in the Lord and know that He will do what is best for Luella - but it is hard. I love my baby girl so much!! Please pray for all of us.

Luella is doing GREAT!

It's not often I get to send a positive email about how Luella is doing, but things are going GREAT! We are now TWO WEEKS SEIZURE FREE. We haven't gone this long since early March. Back on March 9th Luella's total seizure count was at 8, two weeks ago when she had her last seizure it was at number 43! She had been having 1 to 2 seizures a week and leading up the the big seizure two weeks ago - she had seizures on Friday, Saturday, Sunday, Tuesday and Wednesday. So to go TWO WEEKS without a seizure is a BIG deal! Luella started Depakote in the hospital two weeks ago and it appears to be the right drug for her! We are SO thankful to finally have found something that works for her. And we pray it continues to work!! 

 

We had planned on starting Luella on the Ketogenic Diet on July 25th, that date got pushed back to August 8th. Depending on how Luella does over the next week - if she continues to be seizure-free - we might cancel the start of the diet and just see how the Depakote works. The diet isn't easy and we were even contemplating waiting awhile to make sure Luella could be successful on the diet. So... we'll see how the next week goes!! 

 

Thanks for all your continued prayers!!