Sadness and then a wake up seizure

I went to bed last night in anguish thinking of poor sweet Clover and her family. The Dohman family received really heartbreaking news yesterday. Clover's EEG showed no brain activity and her brain has swollen to the point that surgery isn't an option. Patty posted last night - "Tomorrow we will surround Clover with love from her big brother and entire family." Clover's situation hits us close to home. Clover is also from Minnesota and goes to the same hospital as Luella. Clover's parents were at the Dravet conference we went to last summer. Clover had been doing so well up until December. She had gone over a year without having a seizure! In November Clover and her family were able to take a Make-A-Wish trip to Disney World and no doubt captured many memories that will remain with them a lifetime! Please pray for the Dohman family.  http://www.caringbridge.org/visit/cloverdohman

It is just a very real and scary reminder that things can change in an instant with these precious children! We are fighting a battle for Luella everyday and praying that God will protect her!

So, going to bed, feeling sad and then getting up this morning only to hear Luella's monitor alarming less than five minutes later... and finding her oxygen dropped into the 50s... that's how my day started. Thankfully the seizure basically stopped by the time I lifted her out of the crib and got her to the floor. She did need a bit of oxygen. Then I just held her. I wish I could just hold her all day. And never let go...

Prayers for Clover

I have been having a sad day today thinking about another little Dravet girl. Clover is about four months older than Luella and has been having a very difficult time over the past week. She has had many many seizures and a particularly long one also. Basically they are unable to get the seizures to stop even though she is so full of drugs at the moment. Her mom posted on our Dravet Support Group that Clover's MRI showed extensive brain damage and they don't even know if she will be able to breathe on her own when she wakes up. I'm asking all of you to pray for God to work a miracle in Clover and heal her little body. Her family is at a loss right now and needs our prayers.

Dravet Syndrome is such an ugly thing. Even given the best care possible, Dravet can take a turn for the worse and sometimes there is nothing you can do.

Clover has a CaringBridge site if you are interested in reading more details - http://www.caringbridge.org/visit/cloverdohman.

Jim's Medical Marijuana Post / Hot Day + Water = Seizure

As many of you know I (Heather) write these blog entries. Jim has little editorial control over what I post - he usually helps me proofread but he doesn't ever get to write what's on HIS mind. I thought it would only be fair for me to post an entry on his behalf. I'd also like to say that I could not ride this rollercoaster that is Luella's life without the love of MY life! Jim tirelessly researches new treatment options as well as stays up while Luella has her restless nights - which have been many lately - ready to comfort her when she calls. This allows me to get up early with the other kids and to be able to function during the day. I don't know how he survives on the amount of sleep he gets!

One quick Luella update before I turn this post over to Jim. She had another seizure last night. Jim was home alone with the kids and they were begging him to let them run through our sprinkler. Of course Luella wanted to join in too. He thought a few runs by the sprinkler would be ok, unfortunately he was wrong. Although Luella didn't get that wet and only played by the sprinkler a few minutes, that cool water was enough to send her into a seizure. As usual, a spray of midazolam quickly stopped the seizure. Hopefully we can get better seizure control before the summer swimming season is over.... she LOVES the water! I also hate to avoid the water because the other kids all love to swim too and it's not fair to them.

The words below are all Jim’s, but I do agree that this is a treatment option that I’d like to have available for Luella.

Jim's post:

Medical Marijuana is the most promising treatment option for Dravet Syndrome currently available. Except of course it isn't available everywhere, including MN. Even the bills currently introduced (http://www.startribune.com/politics/statelocal/205902971.html) wouldn’t directly benefit Luella, but at least it’d be a step in the right direction. With the majority of Minnesotans and legislators supporting medical marijuana you think passing this legislation would be easy, but unfortunately Gov Dayton isn’t on board yet. Hopefully he’ll see the light soon if enough of us stand up for the rights of chronically ill patients like Luella.

The medical marijuana that helps Dravet Syndrome patients is the nonpsychoactive form (CBD), so there’s no risk of getting high. It’s just another plain old boring oral medication (drops) that you use like any other drug. The biggest difference that it’s more effective and it works without the devastating negative side effects that most of the Dravet drugs have.

Of course there’s no guarantee that medical marijuana would be Luella’s miracle drug, but if you watched her have just one seizure you’d probably agree that it seems unusually cruel to deny her what is probably her best shot at a normal life. When it comes to Luella treatments I’m pro-anything that has a good chance of helping her. I want all the options available. Medical marijuana should be one of those options we could try.

We are fortunate that Luella is currently doing relatively well. But what if her current drugs stop working? What if her condition suddenly deteriorates (which is not uncommon in Dravet Syndrome)? If that happens we won’t have years to start the legislative process. Medical marijuana legislation needs to move forward now, so that we have half a chance of getting access to medical marijuana when we really need it.

If you’ve got a spare hour this interesting PBS documentary looks at the pros and cons of medical marijuana from a scientific point of view: http://watch.montanapbs.org/video/1825223761/

This is one of many Dravet specific medical marijuana success stories. It’d be nice if Luella could go to the pool without a high risk of having a seizure: http://www.cnn.com/2012/12/10/health/medical-marijuana-child

NeuroPsych Evaluation

I should have written an update a while ago about Luella's appointment with the neuropsychologist. Things have been busy with school wrapping up for the kids (they will be done this Thursday!) and Jim gone again for work last week. I'll start out by letting you know that Luella has had three seizures since my last post. I was blogging after every seizure but since she seems to be having about a seizure a week - I don't always have time. Then, what do I say, but that she had another seizure? So you probably won't hear about EVERY seizure... just when I feel like there is something more to share.

Luella's seizure a week ago shows just how important it is that someone is ALWAYS watching her. She had been playing around Jim and the kids in the living room then went to the playroom to play. I was in the kitchen (just the next room over), but was making supper and couldn't be in the same room with her. I was talking with her a little bit to know that she was okay. I asked Jim if he could keep an eye on her since I couldn't be in there. I asked Luella if she was okay - something I ask her several times a day - and she replied "yes, I'm okay". She was quiet again for a few seconds (maybe 30 seconds total) before Jim got there. When he went in the room she was laying face down in the blocks having a seizure! This is my biggest fear and why I feel like I can't leave her for even just a few minutes. I have to be able to hear her talking, singing or playing to leave her - and then I'm still very close by. Seizures get harder to stop if they are allowed to go too long. I did not hear a crash so she must have went down slowly. And thankfully I know it hadn't been more than 30 seconds before Jim found her seizing. She got her meds right away and the seizure stopped. It just drives home the point that she can not be alone.

Backing up to a couple weeks ago when Luella met with the neuropsychologist... The day went well despite Luella have a seizure the night before! We got up EARLY! Thankfully Luella did sleep a bit on the way. We had most of the day allotted for testing but Luella did so great - she got her testing done in the morning and we spent a little bit of the afternoon talking with the doctor. Luella's testing gave her an IQ of 94 (the normal range is 90 - 109) and showed her academically at a four year old age level (she is currently 3 1/2). Those results were great! It was very apparent during the testing that Luella is QUITE active. She could not sit still and it was hard at times to get her to focus. The doctor feels that Luella does have ADHD. Normally a doctor would not recommend medicating such a young child with ADHD but she feels that Luella would benefit from calming her brain to make it easier for her to learn and function. We'll be seeing Luella's neurologist in July and talking with her about the possibility of ADHD meds then.

We appreciate your continued prayers for Luella. We wish we could say no news is good news going forward, but I just don't have time to write about every seizure. Please pray for Luella and all those with Dravet Syndrome. We pray for healing, a cure or a more effective treatment! Thank you.

Seizure Free Run Ended Tonight

Unfortunately Luella didn't make it past the 9 day mark. She had a seizure tonight as we left Grandpa and Grandma Johnson's church supper. I had just buckled her in her car seat and Jim turned out of the parking lot. I heard Luella make a gasping sound and turned around to see her having a seizure. :( I believe this was the first time she's ever had a seizure while in her car seat. Thankfully it stopped quickly with one dose of midazolam and I held the oxygen on her while Jim drove home. She slept for quite awhile then woke up, got ready for bed, read two books and back to sleep! She is such a little trooper through all of this!

More Rescheduling

Thanks to all the snow we've been getting we had to reschedule Luella's neuropsych evaluation for the second time! Who would have thought we'd have issues with snow and ice in April!? As it began to sleet and snow Monday morning I got a hold of Jim who was still in New Jersey for work and we decided not to risk it and reschedule. We weren't even sure if and when he would make it home Monday night and then we would have had to leave at 5am on Tuesday for the appointment! Jim's plane was delayed by a couple hours so it was later when he got home. We were glad we didn't have to get up at 4:00! It did turn out to be quite slippery here this morning and school was two hours late again. I was worried that we'd have to wait a whole month to get Luella in but Dr. Bishop herself called me and worked us in for next week!! Hopefully we are DONE with winter by then! Bless my dear neighbor for clearing my driveway / sidewalk three times while Jim was gone!! I'm really tired of the snow and cold!

Luella is currently 8 days seizure free! She did have a seizure April 15th but remained seizure free the entire time Jim was gone! We pray that we can just keep adding days! About the last seizure... I had just told Ashlyn I needed to run upstairs and that she should keep an eye on Luella. They were already playing catch with a balloon and Luella was having fun. I didn't even get to the top of the stairs and Ashlyn yelled that Luella was having a seizure. Ashlyn recognized the seizure immediately and lowered Luella to the floor before she fell! She did exactly what she was supposed to do! It was another more violent seizure and she bit her tongue again but she was feeling almost back to normal within a few hours. I'm so thankful for Burke, Ashlyn and Ryker and the help they are with Luella!!

I've made it through Jim being gone many days! He does have one more trip coming up and then hopefully he can be home for awhile. I've gotten a pretty good routine down though! :-) Now we pray that we can actually get Luella to her appointment next week and that she will handle the long day of testing okay! Thank you all for your prayers and continued encouragement!

Catching up....

Lots of things to report! I haven't taken the time to write since Jim was gone for work and we just had a big ice storm with snow AND kids home from school! :-)

Luella has had a couple of seizures in the last week. One on Saturday morning - Jim was gone then but the other kids were great helpers and Luella came through it pretty well. She also had a seizure last night (Wed) after supper. Jim was home but wasn't nearby and once again the kids were great helpers. While two seizures in a week's time is more than we'd like for Luella, we also want to remember that so many little ones are dealing with SO much more. When you keep Luella in your prayers, please pray for little Regan (she has Dravet also). She's had over 300 tonic clonic (grand mal) seizures in the last week! It's just heartbreaking!

On a positive note, Luella has really accomplished some "big girl" things this past week! When Jim left for work last week I decided it was time to get busy potty training Luella. She will be 3 1/2 this month and Ashlyn was potty trained closer to 2 1/2. I felt that I didn't want to put too much pressure/stress on her before now and was just going to let her tell us when she was ready. I decided I was ready! I thought she could do it too so on Thursday we went to school in the morning then after her nap I put her in panties and showed her the "Potty Train" chart I made for her. She was very excited! She's been in panties since (except nap and bedtime) and only had 4 accidents - one was during her seizure on Saturday... another thing we'll deal with now. But she has done GREAT!! She is SO proud of herself! She couldn't wait to tell daddy when he got home and show him her sticker chart. (I kept our endeavor a secret from him while he was gone.) Jim says there is no problem I can't solve with crafting! :-) It feels weird to not be changing diapers during the day!! This is the first time in 9+ years we haven't had someone in diapers in this house!! I guess technically Luella is still wearing diapers when she sleeps, but not having to change diapers all day is awesome!! There was a time when we had THREE in diapers here!!

Another "big girl" thing is being able to swallow a pill! We wanted to try time-released melatonin for Luella to see if it would help her sleep better through the night. We've been dealing with some rough nights lately... well, mostly daddy has been dealing with them. Jim is great and lets me sleep! Mostly because I'm a softy and can't let her fuss or cry! Last night she was up for five hours straight!! Anyway, the melatonin is little tablet and she is able to swallow it just fine! We had a couple nights that it was pulverized, but now she does great! Sadly, it isn't helping her sleep. :-( But since she took that just fine we tried giving her one of her other meds as a whole capsule tonight and she got it right down!! This will make giving her meds SO much faster/easier!!

Luella was scheduled for her neuropsych evaluation today but since we got so much ice and then snow we had to reschedule it for a couple weeks from now. While it's been sad so see so many trees going down in our town, the snow was perfect for making a snowman and the kids had fun collecting icicles today! Luella was able to be out for about an hour and a half and had so much fun playing in the snow!! And NO seizure!

Please continue to pray for Luella  - pray for better sleep, for a successful neuropsych eval in a couple weeks and  for things to go smoothly while Jim travels again later this month. Please remember to say an extra prayer for little Regan too! Thanks everyone!!