Today we had our 1 year check up since starting the diet.
The dietitian is happy that Naomi has thrived. Her weight and height are going steady. She had no ideas of changing anything in her diet. So she's still on 3.5:1 ratio 1200 calories. What ever.
We told the neurologist she's still having about 30 seizures a day. The neurologist suggests that we try Zonegran. It's not approved for monotherapy, but we'll try it as just that. If she has any side effects or it doesn't work we'll stop it. Also we won't push the dosage. If it works we'll use it. If not we won't push we'll just wean her off it. That makes me feel a little better. The Dr. is not asking for a commitment to try this drug for long term.
So we'll see how that goes. I don't even have the prescription yet. The Dr. was going to check with her nusing staff and see how best to give the meds. What form I mean. It's not easy to give her a tablet, she'll either bite it or spit it out. Plus with the diet it's not like I can just stick in in a spoon of jelly like I used to.
This drug doesn't affect their kidneys and such like some of the drugs. We'll see. The side effects of any of these drugs are scarey.
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5 comments:
This was Dr. Tuxhorn?
I find it so strange that it seems like the dietitian is in charge of the keto decisions... especially considering how little it seems she does for you. :( Isn't there a neurologist who specializes in administering the diet who is assisting with this????
Maybe you can mix the meds into a spoonful of Naomi's cream? That's what we used to do for Jade's Depakote. Naomi's on 4 meals and no snack again now, right? Would the timing work to do meds with meals?
Does she like chocolate? Maybe you could try making butter/coconut oil candies or even a chocolate pudding (I've got a couple of recipes) and incorporate that into her meals. It means a little less fruit or veg, of course.
What about doing a one-day fast? Might that get her appetite back on track in terms of having breakfast? Would it put her too deep into ketosis?
I don't know what to say, Jenny. I remember when we started and you were supposed to start before us, you said that if the diet worked for Naomi, it should give us hope, but if didn't work for you, we should take it as a sign that Jade would be in the OTHER statistic so that it WOULD work. :) I wish it were working as well for Naomi as it is for Jade and I feel, well, guilty to be honest. :( It's so unfair.
I REALLY hope the Zonegran will help.
Happy 1 year diet-anniversary.
And here is hoping that you see even more reduced seizures in the year to come!
I've watched as Donald and Lisa have tried all of the different drugs with Elisabeth. I prefer to not even hear the side effects, they are just too scary. I usually do though and then I find I have a whole bunch of fresh new worries.
God Bless you sweet little Naomi.
We make a "pudding" using sugar-free jello powder, (hot) heavy whipping cream, protein powder, and water that works well for mixing meds in, and can be made to any ratio. It is Abigail's favorite snack. Let me know if this sounds like something Naomi might like and I can send you info? We somtimes make it in the silicone ice cube molds to make fun shapes (stars, hreats, etc)-Melinda (aka Abigail's mom:-)
sounds like things are going well :)
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