Atty's story: A moment of weakness

Saturday, May 1, 2010

A moment of weakness

Because all signs are pointing towards Atty having Mitochondrial disease (still waiting for results from the biopsy) I started doing some more research. I did research about Mitochondrial disease around the time that he had the severe reaction to his two month vaccines, but being as he is over three years old now I had forgotten a lot. I started watching videos about kids with Mito and now I can't stop crying. I feel anger (I can't really explain that, but I feel it in there somewhere). Frustration. Despair perhaps. Actually I really don't know how I feel other then the overwhelming sadness. MERRF or MIRAS seems like the most likely diagnosis for him, but there are lots of others. Both of those have lots of unknowns. Lots of things that Could happen. Not that will, but Could...the unknown is horrible. This is all so overwhelming. I keep thinking about him, how he was a few months ago. Just a few month ago. Now I can't stop crying. I know I'm getting ahead of myself, because we haven't received the results yet, the words haven't been said in all finality. But I feel sure of the diagnosis, there are just too many things lining up that point to this. I know that it's a waste of time to cry about this when I don't have a final diagnosis of Mito from the doctor yet, but I guess I'm feeling weak at the moment. I'm letting my fears take over. It's a pretty easy thing to do right now, I'm fighting a losing battle with my anxiety, something I've struggled with my whole life anyways. Sometimes I just need a good cry so that when I am faced with the battle for real I will have the strength to fight my way through. I'd rather have a break down at home in privacy then in the doctors office. I was going to post about how the modified Atkins diet is working (yes we are seeing some awesome results right now) and how it's not working (he's seems to be having a reaction to the dairy in the diet as I feared he would). I guess I will go into detail on that later, right now I feel really distraught and I wanted the Atkins post to be a bit more upbeat.

1 comment:

Kat said...: Oh hon, I'm so sorry. That is a scary diagnosis. I just went and looked it up online to learn more about it. There are so many different types it is overwhelming looking at it. Let's just pray that if that is his diagnosis that he has a very mild form. It sounds like many people can live perfectly normal lives once they learn how to treat it.

You continue to be in my prayers. And of course, lots of prayers for Atty.; May 2, 2010 at 12:47 PM

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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.*