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!
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| 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)
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