Almost made it 4 weeks....

Well, I was hoping to write a post tomorrow saying we made it 4 weeks without a seizure, but Luella had one this afternoon at the park. :( She was having such a great time swinging, going down the slide and running everywhere. We were just about ready to head home and Luella ran across the park to where we left the stroller. On the way, she ran across the basketball court and just sort of stopped and her arms went out to the side and her head was up. I immediately ran to her and looked at her face and saw she was seizing, then she started to fall back into my arms. The seizure turned into a tonic clonic and she was quite stiff as I got her to the shade. The kids brought me the bag with her meds and one dose of midazolam did the trick. Of course I was nervous being away from home with only the stroller and all 4 kids. I called Jim right away but she was okay so we headed home on foot.  She is still post-ictal as I write this, sleeping in my arms. Poor little babe.

For the most part we've had a good 4 weeks though. Luella went through a phase a couple weeks ago when she wasn't sleeping well at all, more cranky, not eating as well again... Poor daddy was up almost 4 hours with her one night!! That prompted Jim to want to get a depakote level done again. We suspect that her depakote was out of whack again. I took Luella in last week Tuesday for a blood draw. They tried 3 times and couldn't get a vein. It was getting late, she needed her morning meds and we didn't want to put her through any more pokes so we decided to try again the next morning. I couldn't go through that again so Jim took her on Wednesday morning. Once again, they couldn't find a vein so 3 pokes later and after waiting longer for the anesthesiologist to try they were finally able to get blood. I hate that Luella has to deal with Dravet and all that comes with that but on top of it she has to have terrible veins too! We hope to have the depakote results in the next day or so.

Luella has been doing well despite this seizure today. Last night she was picking on Ryker - tapping his back as he watched TV, when Ryker would turn and give her a "look" - she would just shriek with laughter. We LOVE to hear happy Luella!! In these past 4 weeks, Luella has enjoyed the circus, played outside many times, taken trips to the park, played in the sandbox and learned how to pedal her tricycle by herself. Also made a trip to grandma and grandpa's farm and got to feed some bottle lambs!

We are thankful for every day with Luella but we especially enjoy seeing her having fun. We thank you for your continued prayers for Luella and our family. Hope you enjoy these pictures and videos of Luella having FUN!

Feeding bottle lambs at grandma and grandpa's.

Hello there!

Play-doh time!

Luella LOVES music!!

Playing in the sandbox with brothers and sister.

Daddy and Burke teaching Luella the finer points of Chess.

Video: Luella riding her tricycle. She doesn't steer so well, but daddy says... she IS a girl! Oh, that daddy!!

Video: Love Mommy, Love Luella

A Seizure at Soccer

It was a great night to watch Burke, Ashlyn and Ryker play soccer tonight. Luella was having fun trying to run out on the field. It was also pretty warm. So a mix of running and the heat?? Whatever it was, Luella had another seizure. :( One dose of midazolam and it did eventually stop. She slept through the rest of the game and then we went out for ice cream. She was awake enough by that time to eat most of a baby ice cream cone. After a quick bath she was very much ready for bed.

I was hoping we'd see longer lengths of time between seizures after increasing the stiripentol. It's only been 3 days since the increase, we'll probably hold at this dose a bit longer to see what happens. Please pray that we can start counting weeks or months between seizures, not just days.

Appointment at Gillette and a Seizure on the way Home

We took Luella for a follow up appointment with Dr. Wical (at Gillette Children's Specialty Healthcare in St. Paul, MN) on Friday. Dr. Wical seemed rather pleased with how Luella was doing... except for the one seizure a week she's been averaging for several weeks now. Luella has been sleeping better, eating better, happier... all pointing back to those low depakote levels!! One thing that Dr. Wical was concerned about was that Luella's weight was the same on Friday as it was last August when we saw Dr. Wical for the first time! In the meantime though she had lost about 4 pounds when she had RSV in February and basically wasn't eating for a few weeks! On the plus side, she is now completely proportional on the growth chart and she doesn't look too thin... she has a little double chin and a tummy!! :-) So we just need to make sure she gains a little something before the next visit.

At the appointment time it had been one week since her last seizure. On the way home she ended up having another seizure a little after 8pm. :( We had stopped for supper and wanted her to walk around a little before sitting for another 2 hours. Well, she RAN and was having so much fun I think it was just too much stimulation. I gave her one dose of her rescue med and she did come out of it. I was a little concerned with putting her in the car seat and not being able to hold her and keep a closer eye on her while she slept. She did fine though and ended up sleeping the whole way home. She woke up at home when I changed her but she was wanting to go back to sleep right away and slept through the night too. On Saturday she was right back to her normal self!

Luella getting herself ready for our garage sale!!

In talking with Dr. Wical, we had decided to increase her stiripentol (the imported anti-seizure med) if she had another seizure soon. So with that seizure on Friday night we did increase her med on Saturday. Now already on Sunday we were seeing some negative side effects - more tired / cranky. She needed 2 naps again and had a rough night of sleep. :( Hopefully that will subside as she gets used to the increase and hopefully we can get these seizures under control!

Dr. Wical brought up the Ketogenic Diet during our visit. She thinks it would be something very beneficial to try if we can't get the meds to control her seizures better and/or if we continue dealing with negative side effects. She would like us to try a simpler diet to start with, something called the Low Glycemic Index Diet. It is a more simple diet to start with - at least not as rigid as the Ketogenic Diet, and can often give people seizure control as well. This diet doesn't require a hospital stay to begin (with Keto you are in the hospital 4-5 days to start it) and you aren't weighing food in grams, although you do need to watch portions and count carbs. We aren't starting the diet yet but if we don't see some improvements soon we will probably do it and if it works there is a good chance that the Keto would work even better. So, just some things for us to consider.

Thanks again for your continued prayers. This has been quite a journey for Luella and our family. Prayers keep us focused and we are thankful for how well Luella is doing, many with Dravet are not so lucky!

Oh, and Luella is 2 1/2 now!! (As of Saturday)

A Seizure to Start Friday the 13th

I'm really not superstitious, but having a seizure within 30 minutes of waking up on Friday the 13th kind of stinks! I didn't see the seizure start but she went down flat on her back and hit the back of her head, hard. She had a nice lump back there. It was a tonic clonic again - never fun to watch. The midazolam brought her out of it quickly but she's been slow to recover from the dopiness this time. Usually it take 30 - 60 minutes and she's pretty much back to normal, we are going on 90 minutes and she is still just lazing around. Hopefully she will bounce back to normal here soon.

An update on her depakote levels that we had tested last week... they are LOW!! Ideally we want her to be around 100, she was at 56 this time. Everyone is baffled as to why her drug levels fluctuate so much when we haven't changed her dose. This is why she's been happier, eating better and sleeping through the night lately... AND having more seizures. When her depakote levels are where they are supposed to be it messes everything else up. We would like to find a happy medium!!! We did increase her meds yesterday morning so we'll have to see what happens now.

Jim is still really pushing the Ketogenic Diet. If you are curious about that you can read more here -  http://en.wikipedia.org/wiki/Ketogenic_diet. I really want what's best for Luella but the diet is SO STRICT and would really effect how we eat as a family. Please pray that what is best for Luella would feel right to both Jim and I. We were able to up our visit to Gillette Children's to next week instead of next month so we hope to figure out some things when talking with Luella's doctor there. Thank you for all of your support and prayers!!

UPDATE-- I just wanted to clarify that the Ketogenic Diet would ONLY be for Luella. It's not a diet the rest of the family would be eating. The reason I said it would effect how we eat as a family was that I would not continue making food or eating things in front of Luella that she could not have. Eating out would be more difficult since you can't just order off a menu for Luella. The meals are calculated using specific ratios and ingredients measured with a gram scale. The meal MUST be eaten entirely - NO leftovers or the diet will not work. 

Luella recovering after her seizure