Tuesday, January 24, 2012

Seizures, diets, new bed .. Oh my!

Seizures are the devil. I hate them. Lily is on 4 anti seizure meds. 4. Have you ever read the labels on anti seizure meds? Ever listen to a commercial talking about a medication for foot fungus and hear the side effects and figure you'd rather just have foot fungus? Yeah it's like that. We're no stranger to AED's, we're no stranger to lots of them, but 4. That's just dumb. Plain ole dumb. But you'd think, well with 4 AED's the child couldn't possibly have seizures, right? Well that is where you my friend would be wrong. Lily still does in deed have seizures and wanna hear something else on top of it all? Lily got put on a modified atkins diet. This means hardly any carbs, tons of fat and no sugar. Oh did you know that already by the no carb thing? Well things were starting out ok last weekend, then by Monday she took a turn south. Started refusing everything. Everything. She is getting keto-cal, which she actually loves (a formula for kids on keto diet, like her diet but even more restrictive), she likes this smoothie I make that is a convert of a smoothie I drink every morning, a combo of heavy cream, water, ice, low carb diabetic yogurt, peanut butter and a bunch of spinach, she likes that. And she likes a yogurt whipped cream combo and this is literally only whipped cream with a touch of sweet n low and don't even get me started on my kick of I hate all things unnatural, especially with fake sugars. I had a waitress tell me Lily should not have a diet soda because it contains aspertine. Thanks lady. Appreciate that little nugget. So we are on week 2, on week 4 we can more than double her carbs and maybe life will be better but as of right now she is hating life and that makes me hate life. Feeding Lily has always been a time consuming event, but now it is like a marathon event that you keep falling before you reach the finish line, and you will only get the yogurt in and she will spit out that yogurt if you even think of slipping her meds in it. Something we were always able to do with full flavored yogurts/puddings. But maybe this isn't the diets fault, because Lily has on occasions gone on not eating kicks and I am thinking this may be more of one of those events because at a point of desperation I took 1/8 C of her favorite greek honey vanilla yogurt (her allotted amount of carbs for the day), the stuff that tastes like sweet heaven, and tried to get her to eat it and she refused that too. The only protein she is getting is in the smoothie. She drinks, she just doesn't want to eat. I promised myself to give this the full college try, but considering I only went to college for one year and that second semester only ended up being a first aide class after dropping anything that mattered so I guess the old college try may not be to me what others may think of it. To be perfectly honest here, I have always been afraid of the day Lily stops eating. It happens a lot with kids like Lily, and I never want that to happen, but if I had a button to put her meds in??? Man life would be a whole lot different. I can't believe I even wished that. If you have known me these last 9 years, you know I pride myself on no button for Lily. Many kids like Lily and in better shape than Lily have buttons. Lily has always eaten like a champ so it really sucks that I am saying this. Meds never used to be an issue. I am being cleaver and figuring it out how to get them in, but it is hard. And there were days when I don't think she got any and no wonder her seizures are a mess. The mom in me is ready to give her a carb hog day and let her go wild and see if she starts eating again, but the stubborn in me says we've made it this far we must go on. I'd really like someone other than myself in my head to argue with, but then I imagine I'd have a whole nother world of issues to deal with.
So right now Lily and I battle each meal. It sucks. I don't want her to have brain surgery yet she is on 4 meds that do nothing and a diet that seems to do nothing and has a neuro that seems to think surgery will do something. I am a mama that wants someone to write the play book and I read it. Preferably available on audible.com.
Lily did her get new bed. That is an awesome thing. I'd love to share a picture, but life isn't that easy with out your camera. I can't post pictures on the blog of what I took with the ipad. I know, right? A sphincter says what?
But I can say one piece of positive news, I apparently was carrying a huge load on my back before this new bed came. That first night, after we said our prayers and I tucked her safely in, I slept a whole different sleep that night and could honestly and literally say I felt lighter.
Man, I can't imagine how I'd walk if we found some way to get these seizures back under some control. I'm not asking them to go away completely, I already know that is not a hill we can climb, 9 years of evidence shows this truth, but to be back where I don't have to watch her go stiff, hit her body on something near by, go red, stop breathing for moments of time, maybe that would make my steps feel like air. And who cares about me and my walking on air, what about Lily? I bet her nights would be a whole lot different without waking to seizures and sleeping to seizures. My poor precious girl. We need to find relief.
Ahhhhhhhhhhhhhhh the sweet relief of verbal diarrhea. I feel a little better. How about you?

6 comments:

Tiffany said...

Kim..
This breaks my heart. You must be a champ mom with strong shoulders because I do know that our Heavenly Father only gives us trials we can handle. I hope and pray your load will be lightened. You both deserve it. What a great mom you are! I love you both and am grateful to have your story to read. It sure makes me miss Emmie, even the hard times with her. You both will be in my prayers. Please give Lil bug a kiss for me! I wish I could take her pain away. Love you guys so much, hang in there!! :)

Miah Ella Aarstad said...

I know I will have to live this journey to. I always say balance is the key. I wanted to say thanks for letting me know about Lilly taking sabril. It helped Miah, so far day 2 and no spasms. Have you tried the ketogenic diet? That will be next for us.

Lesley said...

I am also considering a Gtube for my girl. It is a very hard decision for many reasons and every child is different. She has made it to 15 years but is starting to lose some skills now and a Gtube is most likely in her future. And Sarah's new bed is coming this month. Looking forward to sleeping more soundly myself.
I hope you are able to hang in there to know for sure if the diet helps. I love your flickr pictures!

Shannon said...

Did Lily get a sleep safe bed? Were you able to get insurance to cover it at all?? Gage is getting to the point where he's going to need one but...as I'm sure you know...none of these things come cheap.

Kim said...

Tiff...you have the strongest shoulders of anyone I have ever known...love you and miss Emmie so. Let's do lunch soon!
Miah, so glad to hear about the sabril!!! Lily has been on keto 2x and it was never much help. We thought of modified keto as a last ditch effort.
Lesley, sorry to hear you are thinking of a g-tube. I know it isn't that big of a deal on the scale of things but when you've gone so long without you feel defeated. ((hugs))
Shannon, it is very similar. We asked for sleep Sade, they came back saying they'd approve an easy care safe bed. Practically the same thing. If you need some pointers let e know. We had pt write letter of medical necessity and ped write the script. Maybe talk w/ pt? It was 100% covered!
Thanks every for your kind words. It helps knowing others are going through similar battles.

chris said...

I know how difficult diets can be Kim I am lactose intolerant and Kim Lily,Andi and Oliver are blessed to have a mother like you:)

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