"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Tuesday, April 24, 2012

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.

Monday, April 23, 2012

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)

Friday, April 13, 2012

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

Tuesday, April 3, 2012

Too much excitement and another seizure!

Luella had too much excitement tonight and had another seizure. Grandpa and Grandma Johnson arrived here tonight after being gone to Florida for the winter. We surprised the kids by going for a drive and bringing them to Grandpa and Grandma's new house!! (YES!!! They are moving closer to us!!!!) All the kids had so much fun running around the house. Luella was quite active and ended up having a tonic clonic (grand mal) seizure. I know a seizure is a seizure, but I really hate those tonic clonics - they look so dramatic! I gave her one dose of midazolam and it did stop but she went to sleep and then pretty much stayed asleep and went to bed for the night.

We had Luella's depakote levels checked this morning, we'll find out in a couple days what that shows but we suspect that her levels are low and that is what is causing these more frequent seizures. We would appreciate prayers that we can get her seizures more in control again and that we don't lose our happy, eating-again Luella if we have to increase her med doses again.

Sunday, April 1, 2012

Another Seizure Saturday

Little Miss Luella had another seizure on Saturday morning. Jim took the kids to an Easter Egg Hunt (I stayed home to wait for softener salt to be delivered). Luella did fine during the hunt but at the end had a seizure. It was a cool morning but it was also somewhat humid. We can't be certain of the trigger but the good news is it stopped on its own with out recue meds!! This was also the very first seizure that I did not witness, it's crazy to think I've seen every one of the other 57 seizures!

The rest of the weekend Luella has done fine being outside. The weather has been so nice here - HOT even. It actually hit around 90 here today!! We are thankful that she has been able to be in the sandbox and go to the park without any more seizures!

We are going to see if we can get Luella's depakote levels checked this week. It seems like her levels are probably low now since she is having more frequent seizures and no illnesses that we know of. Jim would like to start Luella on the Ketogenic Diet but I'm not quite ready to take that step....