Had an appointment with his dietitian today. I really like her. Since Atty can't start the ketogenic diet until the end of next month we are starting him on a modified Atkins diet. Some children with seizures respond really well to this modified type of the popular diet. Some don't ever end up going to the ketogenic diet because the modified Atkins does the trick. If only we were so lucky, one can hope right!?! It's a lot easier then the other one that's for sure! This one is more forgiving and takes less weighing of food. It's unlimited fats and certain proteins. He can only have 15 grams of carbs a day though! So 5 grams at each main meal, or split up in the meals and snacks to equal 15 grams total. It's not a lot. 1/2 cup of strawberries would equal 5 grams. Or 1/2 cup of low starch cooked veggies. I am suppose to get him to eat/drink lots of heavy whipping cream, it's a main component in the ketogenic diet and this one as well. We are starting the diet for real tomorrow but tonight I tried my hand at making him a diet meal...and I failed miserably. I was in a rush because it was a crazy busy long day and I had to run to the store after getting home from his appointment to get him some of the food he requires and drop off a ton of prescriptions for sugar free meds so dinner was running late. I cooked him his hot dogs (he is only eating hot dogs, scrambled eggs and bananas for the most part right now, won't even try anything else) and then I figured out how many fries he could have (two) and how much peas (1/4 cup) to equal 5 grams of carbs total and I was super proud of myself. I hate measurements and math and numbers...so this whole part of the diet is a nightmare for me. (Not like I can't do it, I just don't like to. I get total mind block when it comes to any sort of math, so irritating.) I made him a heavy cream/water/vanilla extract drink (one of the suggestions for getting the kids to take the cream) it's suppose to make it more like milk. We sit down and I am feeling pretty good about it for about two seconds. Until I realize that the veggies I gave him are not on the list. They are both considered high starch vegetables and not one of the options for him. Uggggg! Then I try to get him to drink the cream, and he is sooooooooooo not having it!! Major fail, at least I didn't have to track this one. I definitely need to do some more studying and experimenting. Tomorrow is the real thing, so I need to get my game face on! I think I'll just stick to scrambled eggs, bacon and banana that's on the list and I can hide cream in the eggs (I hope). Truthfully I am so scared that I am going to fail. That I can't hack it and they will be able to tell what a loser I am. Maybe I'm too stupid to do this, too overwhelmed, too worn thin. I so feel like I could give up. I hate that. I always jokingly say 'just fake it tell you make it' but there is no faking this. No faking. I can't make Atty eat things he doesn't want to eat. Do I have a good enough imagination, am I observant enough to tell what will work best for him, to get him to eat what he needs to eat to make this diet work? I feel strongly that this is what he needs...I know it is...but can I make it work? Am I strong enough. Brave enough. Wise enough. I feel so much doubt right now on the inside. On the outside I have been putting on such a brave face, a real can do attitude, but it's a whole different thing when it gets quiet and dark and I have time to think with no one else around. Today at the end of the meeting his dietitian said 'are you feeling overwhelmed' as she handed me a huge stack of papers and I said 'no I'm excited' and I was, am excited. Because I know this can work. And it's interesting and much easier then the ketogenic diet. But deep inside I am just scared on so many levels. She seemed surprised by my answer because as she went on to tell me many parents feel overwhelmed (as they should and I do truthfully feel overwhelmed with this at times) and not many say that they are excited. I'm a bit of a freak that way I guess, but also I feel like I need to stay positive because a positive attitude gets you a long ways. Even if I don't quite feel all the way positive...fake tell you make it like I said. I really did feel excited all the way home and up until I made him dinner. Then I guess that major fail sort of popped my bubble. Stinks.
Ah well try, try again. Tomorrow is another day. Just keep swimming, just keep swimming...anyone else got any other positive mantras for me? I could use a pocketful.
Tuesday, April 27, 2010
Sunday, April 25, 2010
First blog entry for Atty. Well really for me, to vent about this whole thing with Atty. Because now my son has some serious health issues. That's hard to even type. If you have been following our family blog then you already know about Atty and you've been with me from the start. All the way from this post and maybe that's why you followed me over here. I wanted to have a place to chronicle everything that is going on with him and a place for me to talk about how I feel. I hope to update it regularly so that I can look back and have a clear picture of what we were going through from day to day. Living it is a blur. I hope to come out of this on the other end with a healed child. I hope he will some day be seizure free, but if that turns out to not be a possibility I want him to be as whole as possible. I want him to be happy and to feel as free as he can be. At the very least I want to have the story for Atty to read some day so he can see how brave he was and how hard we all worked to heal him and how we did it together as a family. How his mommy never gave up. Never.
This is going to read just like a journal. Some of it might not make any sense. Some will just be free flowing thought, raw emotion. It not going to be fancy, or well read, or eloquent. Just a tired mom writing about an emotionally overwhelming struggle to help her son. Please don't judge. Understand that I am writing it as I see it and as it works for our family. I have no preconceived notions that what works for us (or doesn't) will be the same for others. I am learning. I am going on intuitions. On research. On hope. On love. And most of all Prayers and Faith.
We had another week long hospital stay. After Atty's muscle biopsy, two weeks ago, he stopped walking or sitting up at all. He started throwing up numerous times a day and became dehydrated to the point that I had to bring him to the ER at Children's hospital. While there they put an IV in to pump him full of fluids and gave him anti nausea medicine. Atty's wonderful doctor at Children's tried her hardest to get them to put us on the fast track for the Ketogenic diet while we were there, but she is coming up against road blocks left and right. It looks like we still have to wait until at least the end of next month. We both feel strongly that the Ketogenic diet is what Atty needs. It's frustrating to feel so sure about what your child needs and to have been so right about so many other things and to still not be listened too. I am thankful that finally we have one doctor who is ready to listen to me. But she can only get so far. She has seen that I am being ignored. She has seen that I took my child in when he was only 18 months old already worried about possible epilepsy, NF1 and Mitochondrial disease. She was blown away by this. There wasn't enough evidence at the time so all they did was send him in for a sleep study and I left feeling like maybe I was jumping to conclusions. She has seen as every medicine has failed just like I knew it would. Atty processes things differently and I just knew it would be the same for the medicine. I can't tell you how I knew, I just did. I learned early on that he didn't tolerate certain foods well and removed those from his diet. So when I started reading about the Ketogenic diet it seemed to me that this was what Atty needed. Seems like it's all tied in together. I think his body will respond to it. I brought it up to her and she agrees. But there is a waiting list to start the diet and Children's hospital is the only hospital in this area that offers it. Mean while he is getting worse and worse. Two weeks before his muscle biopsy I took Atty into the clinic because he was getting worse again and they ended up telling me I should try another medicine (on top of the three he was already taking). After a long discussion I told them I would try it if that is what they were suggesting but that I knew it wasn't going to work and wasn't willing to try it for more then one month if it didn't help. Well sure enough they think that the fourth medicine was part of the reason for all the vomiting and at the very least it wasn't helping at all so they took him off of it at our last hospitalization. I am getting frustrated with knowing what will help my child and what won't and not being listened to. Beyond frustrated. I at least want to try it my way, as in doing the diet, and if it doesn't work it's better then all this medicine that isn't working and has so many horrible side effects. He will still be on the medicine he is on while starting the diet. If the diet does work, and you have to give it at least three months, then they will slowly go down on two of his meds, but I think he will probably stay on the Lamictal. For some time anyways. Some kids can get off all meds on the diet, some can't. I'm not sure if Atty would be able to or not. But I would love for him to be medicine free and seizure free if he could. That would be amazing and it makes it worth all the stress that I know the diet is going to bring, at least at first. It's not easy, I know that. In fact I'm scared, but so ready to try it. So very ready. So that's how things stand now. We are home, he's still not walking or even sitting up really. He's barely eating, and it's a constant struggle to get him to drink enough. I am hoping he won't get worse then this before we get a chance to start the diet because he needs to be as healthy as possible for that. I am meeting with a dietitian on Tuesday and I've been told she might put him on a modified Atkins diet for now. That's also been show to really help some kids. I don't think it will be enough for Atty, but I have a feeling it will help...I hope.