Wow... where do I start with this one... at the beginning I guess....
For those of you who do not know us, my son Logan was diagnosed with Diabetes mellitus Type 1, Celiacs Sprue, and Eosinophilic Esophagitis in early October of 2012.
Up to the late summer of 2012, Logan was a typical, healthy, normal 15 year old kid growing up in a small town in SE Iowa. As I look back, I can see that the signs were there in late summer/early fall, but I overlooked them, dismissed them. The excessive thirst, always eating, loosing weight.... as a former medic, I should have seen the signs, but I figured that he was staying up too late at night, not getting enough sleep.... and what teenage boy DOESN'T eat everything in sight?! The excessive thirst? I was a hot summer.....
For whatever reason, the light finally went on in mid to late September, and I got Logan in to our local GP for a once over, and he immediately confirmed my suspicions. So, an appointment was made for Iowa City, and we were told to pack for a week long stay there to detox the kid, get his blood sugars under control, and to undergo an intense education on how to manage his disease.
While we were there, we were told that there could potentially be "complications" that are sometimes found with D1, and would we mind having some additional blood tests run? So I agreed, thinking that no, my son only had D1 to deal with, and that the other "issues" were "rare".
Logan was admitted with a blood sugar of almost 500 (normal is 80 to 120), and was given an IV port, but allowed to try to flush the ketones out of his system orally, which he successfully did, and was started on an insulin regime along with a diabetic appropriate diet, while we dealt with learning to manage his disease. I have had close friends who were D1, and as a former medic, I knew some of what we were up against, and what the consequences could be, but I put on a brave face, and put Logan first.
I can't imagine what he felt when he was faced with what was going on, but he is a smart kid with a pretty good head on his shoulders, and I thought that we would be ok.
The only problem was that Matt, my husband and Logan's step father, would not come to Iowa City to go through some of the education process. I know this bothered Logan a lot, especially as his dad and step mother made an effort to come up at least once. I camped out at the hospital with Logan, staying by his side the whole time. Although I am not sure now who needed who more.... Logan, or me!
While we were there, we were told that Logan had tested positive for the antibodies for Celiacs, and that we would need to have an endoscopy done to be positive that he did indeed have Celiacs, so that was scheduled as well.
Then began the roller coaster ride that is now our life. The "honeymoon phase" where his body was still producing some insulin ended about 8 months after diagnosis, and we are now on a steady amount of insulin, 4 times daily.
Not only does Logan have D1, he also has a SEVERE allergy to gluten, AND he has another related food allergy, probably to milk as I am also allergic to milk myself.
So, he has to take his lunch to school every day, and we have to buy only gluten free foods for him and things that most kids take for granted, like going out for pizza with is friends, is no longer possible. We can't go out to eat as a family unless we go to specific places that offer a gluten free menu, and he always has to have his "E-Kit" with him at all times that has his glucometer, his lancet, testing strips, a glucagon kit, and sugar. Lots of sugar. Sounds counter intuitive doesn't it.... a diabetic carrying sugar.... well, since he is no longer able to produce insulin, or regulate his own blood glucose levels, we have to do it artificially, and sometimes he becomes hypoglycemic, hence the need for sugar. And yes, we have had to use it.
We now know that his diabetes is a wild card gene, and that his body, for whatever reason has had an autoimmune response to his pancreas, and decided to attack it and shut it down.
He is now dependant on insulin, and will be for the rest of his life.
It was not caused by eating too much of the wrong foods, and it could happen to anyone. There is no set cause for why it happens.
We know that the EE and Celiacs are related to the autoimmune process that shut down his pancreas, and that to have all 3 together is rare, and he is the only one in the town that we live in that is like this.
I was also warned that there would be a 'rebellious phase' where he would rebel against being sick, and would want to go back to the way he was, etc.
Guess what. We are there.
I remember being 16, and being invulnerable. I was 10 feet tall and bullet proof! And I think that Logan feels the same way. I have to nag and ride him about testing his blood, and recording the results, and I try to phrase it in a way that is not obnoxious, but so that he will understand how important it is that we know what is going on with his body. And as a former medic, I get how important it is to track what is going on. But not my son. I wish I could make him understand how important it is to keep his blood sugars in check now, and how important it is to test regularly, since this will allow him to stay healthy, longer.
I have lost 2 friends to D1. I don't want to loose my child as well.
We have talked about getting counseling for him, but he refuses it. We have also talked about a mentor for his D1. Again, a refusal. So, in the summer of 2014, he is going to diabetes camp! Kicking and screaming if need be!
