I’ve had the most difficult time writing this story. It is so personal and still very raw. It’s not only my story to share and I thought it might be better not to. However, I continue to hear one story after another of children dying because they are not being diagnosed on time. Children and adults go into comas then pass away from complications due to DKA (Diabetic Ketoacidosis). There are more stories, but these ones are so wrong in every way. These stories tell people that they can be cured through nutrition. These stories blame everything on sugar. These stories make jokes that make me cringe. Comments like, ‘that’s diabetes in a cup’ ‘diabetes on a plate’ or “ if you eat that, you’ll get diabetes” as if it’s a virus in the food and you’ll catch it!!! Oh and the movies!! I find myself completely baffled when movies make fun of diabetes camps or make comments like “you’re legs are cut off because you ate too much sugar” I question to myself, don’t they know they are making fun of kids? Don’t they know that this disease isn’t caused by sugar? Don’t they know that people with Type 1 don’t ask for this, that it is a life threatening autoimmune disease; a disease that they are stuck living on a tightrope everyday for the rest of their lives.
So how could I educate people? How could I possibly help save someone else from dying. I can’t save them from getting Type 1, but maybe if someone reads our story it could help them get diagnosed before it’s too late, before a family has to go through grieving unnecessarily.
Our story starts before Max was diagnosed on January 18th 2016. We barely knew what type 1 diabetes was or even the real difference between Type 1 and Type 2. One thing for sure was that we didn’t know what the warning signs were.
François (Max’s dad and my husband) and I began noticing changes in October 2015. Max was 14 years old at the time. We always found an explanation or excuse for all of the symptoms. We figured that his moodiness, grumpiness and irritability was due to teenagerdum and a concussion he suffered in November. It still breaks my heart all the reasoning and justifying we did.
I am defeated by how wrong I was about Max. If only I knew the warning signs.
Once he was cleared from the hospital after his concussion, he got back to his routine, he started to go out more with his friends in the city, his hockey routine was intense and school was stressful for him.
He started complaining that he was exhausted all the time….. I told him because he wasn’t pacing himself. I said he needed to get more sleep.
Max was saying he was hungry all the time…..We justified it. Saying it was because he was a teenager. I said he wasn’t eating properly when away from home. I told him he needed to make better protein choices at school and make sure he was eating the snacks they offered. I expressed that he was growing. He was in fact looking like he was losing weight. So what did we think again??…..He wasn’t eating properly. He was at an age where I wasn’t monitoring everything he was eating anymore.
During his pre diagnosis months, he was suffering leg cramps all the time. His hockey coach came up to me after one of their weekends away to tell me that Max had so many leg cramps that was probably due to the amount of hockey he was playing. When we went to get a follow up for his concussion at the hospital they said he wasn’t consuming enough magnesium. Magnesium was quickly brought into the house but the spasms became more painful and he was experiencing them several times a day.
Since there were several ‘minor’ issues I decided that I was going to bring Max to his pediatritian. I played phone tag with the secretary for a few weeks then we went into the holiday. At which point, I was thinking that Max will be consistently with us. I will monitor what he’s eating; make sure he gets enough sleep and in the New Year I will book that appointment. I went back to barking at him that he wasn’t eating properly. We did eventually get an appointment but the earliest was scheduled for a few months away.
In December he started to complain that his eyes were bothering him. It looked to me that he was developing a ‘lazy eye’. Of course we made an appointment with the eye doctor. Sure enough he needed glasses……or did he really? We ordered them and I thought we fixed that for him.
Max started to go to the bathroom more than usual. He was drinking so much water that it was odd. I again jumped down his throat and told him he was eating too much salt and sugar when he was out and about. I was sure it was why he was so thirsty. I blamed teenagerdum again!
He started to complain that he couldn’t play hockey as well as he used to and blamed his skates being so worn out. We decided to get him a new pair of skates thinking that will help him with the new blades and stiffer boot. Nope……I watched him play and was horrified. Don’t get me wrong; I’m far from being a ‘hockey mom’. When I see my kid look like he’s not making any effort in anything he claims he loves then I lose it! He got off the ice and said:“ I didn’t even sweat” My response was “you didn’t even try”…… In the car on the way home he told me that his friends in the locker room were noticing that he was losing his famous muscle. This kid had abs everyone envies. He didn’t have them anymore. They were asking “are you starving yourself” “what are you doing? you are looking skinny”
Excema started on his face and scalp but because it was winter and the air was dry I blamed our central humidifier and thought it was on the fritz. Our solution, get it fixed and buy shampoo to specifically treat it.
Over the holidays, Max did seem to get better making me think my theory of teenagerdum was right. Except, he started to have heartburn, his excema wasn’t completely gone, he was still peeing frequently, he was drinking so much water. He was irritable and emotional which I thought was because his friends were all away and he was stuck with his boring family at our secluded cottage.
Back in the city we went to see the movies and during it, Max went out numerous times to get something to drink and eat. “He’s a growing boy; hungry all the time” “Teenagers and their hollow legs!” was what was being said.
I thought that he was going to be my toughest teen to get through this stage. All the kids have been great and have done their fair share of knucklehead stuff but all in all they have been good and have turned into wonderful adults. I was having my doubts about my parenting abilities when it came to Max. We live far from his friends and he is quite the social butterfly. He became resentful about where we lived because he could not run over to a friends house last minute. He was miserable.
The week school started after the holiday break, I received a phone call from his English teacher saying that Max was very engaged with the student teacher before the holidays but now that she is back, it would seem that Max has “checked out”. She said she didn’t know what she was doing wrong and wanted to know what my thoughts were, how could she motivate him. I didn’t have an answer for her but I was sure it wasn’t because of her. Again and again I thought he wasn’t eating properly. So I had yet another sit down with him and told him he was coming to the cottage with us that weekend. He was hesitant but parental authority prevailed.
We arrived at the lake on the Saturday and had a relaxing time. François and Max cleared the snow on the lake to skate on. Max ate well and went to bed early and had what seemed like a restful nights sleep. When Max went to sleep, François and I were discussing that instinctively something just didn’t seem right with Max. François mentioned that he had cleaned the bathroom and as most of you know, some of you guys out there have bad aim….Max is like some of you! What he noticed when he cleaned that part of the bathroom that is was oddly sticky. We starting to wonder if it could be health related with him…..that was the start, could it be diabetes? What did we know about diabetes? Only really what we hear on several forms of media….which for the record, I know now is mostly wrong. Again, we will try and see Dr Rossy earlier. It doesn’t have to be a rush, we will just make sure he eats properly and keep him home until we see a health difference. As I’m writing this…I’m cringing…
The next day we were all down by the lake when my aunt and uncle walked by stopping to chit chat with us. Max was skating. Usually he is engaged and interested. Normally he would have come over to all of us and say hi. He didn’t…I was not going to make a big deal about it but I thought it was unusual and rude on his part. When they continued their walk I went over to him as at that point he wasn’t skating anymore, he was slouching over the ATV. He looked at me straight in the eyes and started to sob uncontrollably , “I can’t even skate for fun. Something is wrong with me” He looked so very scared. Deep down I knew something was wrong, but I continued to deny it.
That was it. We decided to pack up and head back to the city. We were not going to wait for the yearly appointment to see the doctor.
“We are going to go home, you are going to have a good dinner then go to sleep and we will see Dr Rossy in the morning during his emergency hours” I was still hung up on the healthy food and good night sleep theory. Once we were back in the city, I decided to look at the paper I had written all the issues and questions down on over the past few month that I wanted to discuss with Dr Rossy. I thought they were all unrelated to each other. I went online and put in all the issues and the only thing that came up was type 1 diabetes over and over again. I turned off the computer and decided to wait to see the doctor in the morning. I thought maybe that he could also have Hashimoto's Thyroiditis from some of the symptoms which is what I have. I had no clue that the next day would change Max’s life and our lives forever.
Dr Rossy diagnosed Max with type 1 within less than 5 minutes. I showed him my list of concerns and questions, then he went over to him and smelled his breath. How odd I thought. Then Dr Rossy told him to go to the bathroom and pee on the ketone strips. When he was gone to do that with François, I asked him about the possibility of Hashimoto’s. He said he would need to be tested for that too but first he believes that he has Type 1 diabetes. I just blankly stood there and said ok… Max and François came back with the sticks at that point Dr Rossy said “just as I thought” and told us to go to the hospital for further testing. Again, I didn’t understand the severity. We were in the middle of a snowstorm, traffic was backed up to get into the city for 2 hours. We decided to swing by home, have Max grab something to eat and his homework as we knew we were going to be waiting for a while. We had an inspector coming to the house that day and we decided that I would be the one to go to the hospital with Max and François would stay back with the inspector…..Had we understood what was about to happen, we obviously would have cancelled that appointment so that Max could have had both of his parents with him.
It does takes us the two hours to get to the hospital and I think we are going to be there forever. We arrive at the first window and they say they have been waiting for us….I think how great it was that we went to see Dr Rossy first, we are going to go by quickly after all… we are going to fix this and he is going to be all better. As we were with the triage nurse she tests his blood. I ask her what his number is and her response was “it’s a little high”. I ask her what it’s supposed to be, “a little lower” she says. Ok, we’ll fix this is what was going through my mind. I was then expecting to go back into the waiting room when the nurse said that she was taking us into room 2. Great, we’ll be out of here pronto! We follow her into the room and a couple of seconds later “CODE blah blah room 2” is screamed over the intercom. Wait, that’s our room…..5,6,7 people (I have no clue how many just so many people so quickly) come rushing in to Max as he is on the emergency bed. Boots are flung off, gown on, wires, needles,blood drawn, monitors etc.… The doctor comes over to me as he notices I’m shock and he puts his hand on my arm and tells me it’s a good thing we brought him in time and that some children arrive in comas and some don’t make it. Then poof, everyone was gone getting the tests analyzed.
Diagnosis was officially confirmed half an hour later and we had to wait for the endocrinologist to see Max. This is when he tells us what we had to start doing every day to keep him alive…….What do you mean keep him alive? You mean food and water isn’t enough anymore? You’re saying this is forever? You’re saying if we don’t do this right, we could lose him? He could die? There is no cure? There is nothing? No treatment to get rid of it? Really?
Our story since diagnosis could go on but my point of sharing this part of it was to explain how all the symptoms evaded us for months and maybe just maybe some of these symptoms will be recognized early enough for others that they won’t suffer as long as Max did and get the care needed before any damage is done or worse.
Once his blood sugar was being managed as well as possible, his leg cramps went away; the excema was gone; he put back the healthy weight that he had lost and he no longer needed glasses!
That night after he received his first dose of insulin, Max remembers it as one of his best nights sleeps. François and I remember it as one of our worst.
We continue for a second year in a row to be part of ‘Team Suzie’s Sweethearts’ JDRF Walk with Max Domi this year again.
“It’s all about the GOAL” and that’s to reach $20 000.00
Any financial help you can give on Max’s behalf this year would be so touching and greatly appreciated!
We are very hopeful that we will witness a cure for this disease within Max’s lifetime.