Our Diabetic Diagnosis Story

I am asked by parents all the time how we knew Macy was Diabetic. The answer is we didn't. Every parent of a Diabetic child seems to carry some kind of guilt from their child being sick. I have heard horror stories about coma and seizures being the signs some parents were given. I am truly grateful we didn't get that far. However, the truth is Macy could have easily gone into a coma or had seizures. We were just very lucky (even though luck really doesn't seem like the best description of becoming diabetic). Macy was sick for a couple of months. I cringe thinking back on that time.

As a single mother of three children (ages 7, 5, and 5) who was going to college and working full time I wonder how I was able to notice any changes in my children. But I did. Macy began to be cranky all the time. She lost weight. She was 7 years old so losing weight for her meant her clothes began to hang on her. I remember getting out the box I had put in the closet of clothes she had grown out of. She had gone down in pants and shirt size. I made a doctor appointment with our pediatrician. I told him that she was not normally so cranky and she had lost enough weight to go backwards in clothes. He did a quick check of her and told me I was being an over worrisome mother. She was fine. Children go through growth spurts and phases. Okay, I didn't understand but he was the doctor. So we went home and continued on with life.

A week or so later Macy was sick. The school nurse called me to tell me she didn't have a fever but she had a tummy ache. I remember the school nurse saying something about maybe she was having a rough day and wanted to go home. But that didn't sound like Macy. Macy loved school. She loved everything about it. So I left work and picked her up. We cuddled in bed and watched movies. She never tossed her cookies but her tummy bothered her all night. She said she just didn't feel good. So the next morning I took her into the doctor, again. The doctor said she had a stomach virus and to give her plenty of fluids. He said there was a virus going around the schools, not to worry, she will be fine in a day or so. Okay, plenty of fluids. Got it.

Another couple of weeks (or so) went by. Getting Macy to school in the mornings became a challenge. She was cranky and didn't want to go. She wanted to stay in bed. She said she didn't feel good and always seemed to have a headache, something she had said throughout the last few weeks. She was always hungry. I honestly hadn't noticed at this time any extensive thirst or bathroom visits. It was the afternoon and we had just gotten home from the store. She was eating Skittles candy and took them to her room with her. She said she was tired and laid down. I was putting groceries away when she started crying and her little sisters came to me and said Macy wants you Mommy. As I was walking into her room I remember her little doe eyes looking up at me filled with tears. I asked her what was wrong. She said her head hurt really bad. My 7 year old baby girl was crying these huge alligator tears while she clutched half of bag of skittles in her little fist. All of a sudden she began to violently throw up. There really isn't another way to explain it. There was no warning, it was just horizontal vomiting all of a sudden. It seemed to surprise her just as much as me. I know this is gross and I apologize but scents really stick in your memory, I remember that it didn't smell like vomit, it was that strong skittles smell, she had eaten half the bag. I cleaned her up and we went to the doctors immediately.

I no longer could believe that I was being over worrisome. Something was wrong with my baby. The doctor examined her and told me she was suffering from a migraine headache. This was devastating to me. I have suffered from Complex Migraines that mimic stroke symptoms since I was 13 years old. They can be crippling and migraines are hereditary. I questioned his diagnosis as she was so young. He said it was rare but everything that had happened that day was a classic migraine. He was a very popular pediatrician and I felt like he was the doctor and must know more than me. We left, and I pampered my daughter as much as I could. I called my mom and planned a trip home (which was a 6 hour drive north).

So that Friday we packed up the car and left for my moms house. The drive is a standard 6 hour drive. It took us over 8 hours to get there. Macy had to use the bathroom so many times we were stopping every 30 minutes for her to pee. Macy was drinking water like she was on fire inside. I remember snapping at her telling her that maybe if she stopped drinking so much maybe she could stop peeing and we might actually get to my moms. (yeah that is one of those things that stays with you forever, I had no idea she couldn't help herself).

We finally go to my moms. (My mother has been a CCRN -which is critical care registered nurse working in the ICU for over 30 years. She is who we [the family] talk to about every little issue we are having.) It was late and the kids were just as tired as I was. So we unpacked the car and went to bed.

The next morning was pretty normal. The girls were running around playing with all of their favorite Grandma stuff and having a blast. Macy wasn't feeling great but she seemed to be having fun so it slipped my mind to talk to my mom about everything. We were catching up and having fun, all of us. It was after lunch that Macy started feeling sick enough to cause concern again. She was in my lap and I started telling my mom all the stuff that had been going on. I had told her some over the phone, but not all the day to day stuff.

My mother is one of those people who are able to stay very calm and level headed when emergencies happen. (A gift she shared with me that I am very thankful for. Deal with the problem now and then panic on your own time...that's my motto). Anyway, my mother and I were talking about everything and I said isn't there something that makes you drink and pee a lot? I will never forget the look she gave me and how everything happened from that moment on, not one detail.

So my mother said to Macy, why don't we test your blood sugar? It is simple and quick okay? Macy agreed and my mother went off to wherever she goes in her house to retrieve those things that you and I just don't have tucked in a drawer in our own home. She came back with a little black square kit. We sat on the couch and my mother used the lancet to poke Macy's finger, applied the drop of blood to the test strip, and we waited for 5 seconds. The kit registered a word not a number, HIGH.

I had no idea what HIGH meant. I had no idea how our lives were about to change. I looked to my mother for her leadership and did as she said. My mother was very calm and simply said, "We are going to go for a little ride. Ok, Macy?" Macy nodded and I put her on the couch to watch a movie while we prepared everything to go. I still had no idea what to think or feel.

My mother told me she was going to call the hospital and set everything up for us to go to the ER. My whole life when something was wrong and someone needed to go to the ER my mom would make a phone call and when we got there they knew we were coming. It wasn't out of the ordinary for us. I remember just saying ok and not asking her any questions. (I may have, but I don't remember it if I did.) She told me to pack a small bag for Macy to include toys she could play with quietly. She went upstairs to make her phone call. I started getting everything ready. She had come downstairs once or twice getting herself ready. There was no running around or frantic feelings of any kind. (I don't remember, to be honest who the twins stayed with. My step-father was home and it may have been him who watched the twins while we went to the hospital. There was other family there and I could be wrong. But I think it was him.)

I was calm and relaxed. My mother was helping me with Macy, there was no reason for me to panic. And then it happened. I was walking down the hallway and as I passed the doorway to my mothers room upstairs I heard my mother sobbing quietly to my step-father. She was crying. My mother was crying. I am not saying I had never seen or heard her cry before. It was the timing and how she was crying. I remember standing in the hall and having this wave of fear wash over me. I realized at that moment that it was something serious and our lives were going to change. I have no idea if my mom knows that I heard her crying. We never talked about that. When she came downstairs she had composed herself and was again calm and steady. We left for the hospital.

Macy was in her jammies and she walked into the ER. They did their own blood sugar test with the finger poke, and if I remember correctly her blood sugar registered at 683. There was questions about her health history and how she had been feeling and there were conversations that were between my mother and other health care workers. Then they came into and gave her a shot. It was a sedative. They needed to start an IV and do many tests. So they decided sedating her would be best rather than gt her all upset. Well, she had a violent reaction to the sedative (it lasted a total of 15 minutes but that 15 minutes seemed to last forever). At one point while I was in tears holding her tightly in my arms there was a nurse who made a very strong statement to me about controlling my daughter and something about restraining her. I don't remember exactly what was said, it was a very emotional time for me. However, I do remember my mother standing up and getting in this other nurse's face (who was a co-worker) and telling her very directly that Macy was having a reaction and this was not normal behavior for her. Once they figured out (with the assistance of my mother) that Macy was having a reaction to the sedative they gave her a different one to counter act the first and actually calm her down. The doctor came in and told me should would have no memory of what happened which helped me some, but I cannot get that memory out of my head.

Macy was sedated so heavily she could barely speak or lift her own head. They did the test they needed to and put her IV in. We were admitted into the ICU where we spent the next 3 days. In this time I had a crash course in how to give injections and how to take care of my baby. I honestly couldn't tell you what else happened on these days. I have no memories of them at all.

I do remember Macy's first shot of insulin in the hospital though. The nurse brang it in and Macy started freaking out. My mother wasn't there. I asked Macy if she wanted to do the shot herself, the nurse immediatly said very strongly that Macy could not do the shot herself. This was a time I was very grateful we were in my moms hospital, in my moms ICU. I told the nurse in an equally strong tone that yes, my daughter could do the shot herself. I took the syringe and gave it to Macy. Macy took a deep breath and did her first shot, all by herself. Apparently at that age it is very unusual for the child to do their own injections. It was and is the only control she has over her Diabetes. She is the one who does her shots, finger pokes, and pump inserts. I can count on my hands the number of times in the last 8 years I have given any injections or done the poking for a test. I have helped her manuever many times, but she is in control of the needles.

The rest of the next few months is a blur. I took 3 weeks off work and school classes were made up. The woman who was my daycare provider/babysitter for my girls was a close personal friend. She maintained during these 3 weeks that she would and could learn how to take care of Macy and would continue to watch my girls. Three days before I had to return to work she dropped a bombshell on me and decided she couldn't and wouldn't continue to watch my children. That was the beginning of my war; me and my girls vs the world in regards to the rights of a diabetic child.

We were lucky Macy didn't go into a coma or have seizures. My heart goes out to every parent of a diabetic child, but those who had to endure what we did plus a coma, seizures, or both- I don't know how you survived. I barely survived emotionally from our ordeal.

The truth:
My daughter was losing weight because her body was breaking down body fat to get to the insulin stores in her fat (which we all have). And her body was unable to absorb the glucose in her system which is why no matter how much she ate she was always hungry and didn't gain any weight.
My daughter's tummy hurt because her blood sugar was so high she was nauseas which is a very common symptom with high blood sugars.
My daughter was cranky all the time because her body was not metabolizing the food she ate into energy. Because she had no insulin being produced in her pancreas to attach and convert glucose into the blood stream.
My daughter had a horrible headaches because her brain was swelling due to her consistantly high blood sugars.
My daughter violently threw up because her blood sugar was high and she had eaten half a bag of straight sugar (Skittles) so her body rejected the sugar in her stomach in an effort to protect itself.
My daughter was thirsty constantly and peeing constantly because her kidneys were trying to expel the high levels of glucose in her blood the main way the body expels, through her urine.

I was not being an over-worrisome mother. I knew my child and knew something was wrong. We never returned to that popular pediatrician who dismissed my concerns and missed the diabetic diagnosis of my child.

I am not a doctor or healthcare provider. I am the mother of a diabetic child. If your child has any of these symptoms or you feel like something is wrong. Seek medical attention. If you don't feel the doctor you are seeing is addressing your concerns, get another opinion.

5 comments:

  1. Oh my word! What a nightmare. Thank goodness your daughter had you and your mother to take charge. Poor thing. And please tell me you told that pediatrician he was wrong all those times.Good grief. I would be livid. I'm so glad your little one is ok.

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  2. What a nightmare! Thank goodness for grandmas who are nurses! I'm happy your daughter finally got diagnosed, and received the help that she so desperately needed. Best wishes!

    I'm visiting from Tuesday's bloghop :)

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  3. Thank you for sharing this! We have to remember to trust our instincts for this very reason and it is because of you that another mother who reads this just might do that...

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  4. I cried and cried as I read this, because I have a 3 year old son who drinks and urinates constantly and is always tired. We have seen a few docotrs about the issue because my dad has diabetes and I know the warning signs and they have all dismissed my concerns. I have scheduled another appointment to have him seen!! I wish your family the best of luck and Macy is very lucky to have you as her mother!!!

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