Atty's story: December 2010

Wednesday, December 15, 2010

Quick update

Went to another doctor appointment because Atty had been complaining that his feet hurt and was walking funny but we couldn't figure out why. Well by the time we got into Children's hospital to see his doctor, weeks later, he wasn't doing it anymore. So we figured nothing out, except that it might be because we recently went up on his Lcarnitin because of high anmonia levels. There is a type of nerve pain that can be helped by Lcarnitin and so it is interesting that he stopped complaining about his feet around the same time that we went up on that medicine. Hummmmm....I guess now we will wait and see if he mentions it or starts walking funny again.

Another random note, I messed up during the holidays. The weekend before Christmas we went to my mom's house for a get together and I realized {to late} that I had left ALL of Atty's food on the table by the door at our house. My stomach just sank. I left all his meds too, which wasn't too big of a deal because he didn't need them as we weren't staying over or anything but I do like to have his emergency meds just in case. Even though we've never had to use them, and Lord willing, never will. Anyways he got pretty sad, and then started freaking out because I'd made a big deal about the special cookies I was making just for him and then had none to give him. I wanted to cry. But I stood my ground on the no throwing fits over food thing and sent him into the other room until he was done. He settled down soon and then we had a talk and I told him how very sorry I was and how sad it made me feel that I messed up and that he could have what ever special food he wanted as soon as we got home. There was a guest at my mom's who didn't really understand the big deal and it was super hard not to respond to that in a rude way. We found a few random things to offer him, but he didn't eat much. He did well the rest of time though and when we got home I was good to my word even though it was super late I let him stay up and eat some cookies and some of his peanut butter.
That whole weekend was busy but went smoothly and no more food was forgotten, thank goodness!

Side note and a little history~

Please NOTE that I am in No Way giving medical advice on this blog, and I am not a dietitian, so although I think it is a great idea to learn new things from others I also strongly believe that no one should blindly follow anyone. You should always do your own research. If you are making medical decisions ask a medical professional (or two or three). What works for our family will not necessarily work for yours. All recipes are simply suggestion that you should research or talk to your dietitian about before using. Remember as you are reading this blog that it is simply the journal of a tired mom searching for answers to her sons health problems and a place to document our journey. By sharing recipes as well I hope to inspire and help others out there in similar situations. :)

And now for a little history on Atty:

Atty was originally diagnosis with grand mal seizures after his first seizure in January of 2010. Now 6 medicines later, some of which failed miserable, none of them working optimally, I have been told that my child has intractable seizures . His seizures branched off from grand mal to include petit mal, tonic spasms, and drop attacks. As well as some that just seem to baffle everyone. He's had numerous hospital stays, appointments, a muscle biopsy, a spinal, more blood draws then I can count or care to remember, an MRI, a CAT Scan, an EKG and a few EEG's. During his last EEG they noted 60 seizure spikes in about 45 minutes. In April of 2010 he was not walking or sitting up on his own, he could barely talk, he was throwing up all the time, had lost an interest in food for the most part and was continually at risk of becoming dehydrated. My happy Atty was struggle to smile and instead cried the majority of the time he was awake. It was heart breaking. We were about to start the Ketogenic diet, but while waiting until our turn his dietitian started him on the Modified Atkins for seizures diet. What we have witnessed since then has been nothing short of a miracle! We are not sure if we are going to go all the way onto the Ketogenic diet now because what we are doing is already working wonders! I can hardly believe we have come so far so fast. I wish there was a good way to spread the word to give hope to more parents out there that were in the same place we were. More people should know about this because it truly has worked for many! My son is one of them!

Once again to make myself perfectly clear this blog is simply for me to journal our experience as we start down this new path together. I want Atty to know that I never stopped searching and I never gave up.

*To the world you may be only one person, but to one person, you may be the world.*