Saturday, March 12, 2011

FWD to Raise Awareness/Silent Epidemic

Did you know it has gotten to the point that now there is a new term, SOJD? (Sudden Onset Juvenile Diabetes) I hear this SOJD is being labeled a "Silent Epidemic" and my heart just wants to scream......

Since the day Maddison was diagnosed, when I see a story about misdiagnosed Diabetes, or the tragic death of a child/person that has been living with this disease, I have to forward it. I have to. I copy it, paste it, and then send it to everyone in my email address book asking them to do the same. For the simple reason of raising awareness. I have to. Something compels me to. Something always tells me THIS could be the story I forward that may save another child's life. Perhaps I can help a worried mother identify her child's symptoms early...or at least help people understand the seriousness and cause of the disease....

So the other day I forwarded this tragic story through my email list....

A Journey Through Grief
Losing a Child to Sudden Onset Juvenile Diabetes


The sole purpose for writing this article is to hopefully spare every other parent from going through the needless trauma that our family has suffered from the sheer lack of education about Juvenile Diabetes. The medical community readily admits that first time presentations of patients suffering from Sudden Onset Juvenile Diabetes (SOJD) is commonly in a hospital ER setting to be followed up by a stay in ICU. In our case, it was the Pediatric ICU at Huntsville Hospital.

If you don't have a family history of diabetes, the last thing that you, as a parent, might consider to be a childhood malady would be (SOJD), also known as Type 1 Diabetes. For 6 years, our daughter had been the picture of health. She had the normal childhood illnesses ear infections, sinus infections, stomach viruses and such nothing out of the ordinary. So, as an experienced and I thought, educated, parent of 4 children, when our daughter, the next to the youngest child in our family, started exhibiting symptoms that very closely mimicked stomach flu, an illness that our 8 year old child had a couple months earlier, it was no wonder that I didn't consider the notion that this illness was anything else. Unfortunately, it was something very sinister and deadly.

The last week of January, Mary Kathryn, our daughter, had started acting the best description would be, droopy. She just didn't seem herself, but aside from drinking more liquids, nothing seemed too out of the ordinary. After all, she was just in kindergarten a lot of other kids that I know come home from school and seem tired. Preferring to lay on the couch instead of going outside to play then too, it is January who wants to go play outside in the cold anyway? So, I didn't think too much about it.

The next day the school nurse called to say that Mary Kathryn had come to her office because her tummy was hurting. The nurse checked her temperature, which was fine. I asked her if she thought I should come and get my daughter and she didn't seem to think that was necessary. I told her about Mary Kathryn drinking more fluids and the nurse asked if we had had her blood glucose levels checked and I said no. And I asked if higher fluid intake could relate to a viral type infection and the nurse said yes. I spoke to Mary Kathryn's teacher and asked her to keep an extra close watch on Mary Kathryn and call me if she thought I needed to come and get her. The next contact that I received from her teacher was that Mary Kathryn seemed fine and to be feeling better.

On Wednesday of that week, Mary Kathryn got up feeling more sick and complained about her tummy hurting. Fearing that she had contracted a stomach virus from school, I kept her home that day. For the most part, she would rest on the couch. She ate some jello and fruit, apple and grapes, her favorites and she was drinking a lot, but she wasn't running a fever so I kept waiting for the inevitable trips to the bathroom to help her with and got the Lysol disinfectant ready.

Thursday was a repeat of Wednesday. She never vomited, but she kept complaining that her tummy didn't feel well. When I got up on Friday I thought, surely she's coming around the corner today with this sickness, but when she wasn't any better, I reminded myself that my 8 year old was sick on the couch for 5 days with the stomach flu before he finally got better, so I assumed she was going to be the same way. But on Saturday, she was so weak that I sat and held her most of the day. I gave her anything she asked for Popsicles, Coke, apples, Jello, water all in hopes that any of it would help her to start feeling better, amidst all this, almost constant trips to the bathroom. By late in the afternoon, I had gotten scared that something else was going on. She was just so incredibly weak, I knew that I had to get her to the hospital.

I arrived at Guntersville Hospital ER at around 6:30 p.m. We didn't have to wait long to be seen by the triage nurses. They asked what was going on with Mary Kathryn and I told them that she was complaining about her tummy bothering her, but she was so weak and her breathing was labored. I also told them that she had started drinking more fluids and going to the bathroom a lot. They exchanged knowing looks and ordered a blood glucose test. When the results came back, they showed that Mary Kathryn had SOJD, Type 1 Diabetes. I was shocked we didn't have a family history of diabetes. The doctor told me that didn't matter. Having a family history of diabetes only increases the risk to other family members it doesn't guarantee that if you don't have a history of diabetes that that means you're home free and can't get diabetes.

Because of the immediate medical needs of my daughter, she was transferred to Huntsville Hospital's Pediatric ICU. We arrived at that hospital by 10:30 p.m. I had to wait for an hour while the nurses and doctor got her situated in her room. By the time the doctor was ready to speak to me, my husband had also arrived at the hospital. The doctor explained that what was going on with Mary Kathryn at the moment was called Diabetic Ketoacidosis (DKA). Because Mary Kathryn's pancreas had shut down, her body had no way of making insulin, which is what the body needs in order to metabolize sugar in the body so that it can be used to fuel the cells. The only way to flush out excess glucose in the body is for fluid to bind with the glucose so that it can be flushed from the body. Which is why Mary Kathryn's thirst had increased and also why she needed to use the bathroom more. Another side effect from DKA is that the patient can't drink enough fluid that the body needs to help flush the glucose out of their system so the body also starts robbing fluids from fat tissues, muscle tissues and even the organs of the body. As it turned out, Mary Kathryn was extremely dehydrated because of her condition.

I stayed by her bed in the ICU as every intervention, on Mary Kathryn's behalf was made by the doctors and nurses. I would hold her hand and talk to her. Every time her big brown eyes would open, I would stand up next to her and tell her that I loved her. She'd ask, "When can I go home, mommy?" and I'd say "soon". The last time she opened her eyes, I stood up next to her and whispered in her ear, "Mary Kathryn, I love you" and she said, "I love you too, mommy". Those were the last words she ever spoke. She would later become unresponsive, she went into a coma, and later we found out that because she was so dehydrated and during the process of hydrating her, plus trying to stabilize her blood glucose levels, her brain swelled and herniated causing brain death. From the time I found out that my daughter was a diabetic, until the time that she died, was a period of less than 18 hours. And the medical community readily admits that first time presentations of patients suffering from Sudden Onset Juvenile Diabetes (SOJD) is commonly in a hospital ER setting to be followed up by a stay in ICU. Most patients live, but there are others, like my daughter that do not.

You might ask, "Do you blame yourself?" My honest answer would be "yes". I've tried to blame myself every way imaginable. After all, I'm a pretty educated parent, right? But, here's the sad truth, I can't even take the morbid pleasure in kicking myself because I'm an idiot, because some doctors have missed it in their patients and some of them have missed it in their own children. Well, okay I concede that I'm not as smart as a Medical Doctor, but it's my fault I should have gotten her to the hospital earlier. I am at fault there, right? You might think so, until I found out that patients have shown up at hospitals in worse shape than my daughter and with higher blood glucose levels than she did and they lived. So, I'm left with no one to blame except for the lack of information out there and the silent epidemic that no one wants to talk about.


And this is the response I got from my Aunt after she received my email....

"Thank you Kelly,
When I was growing up we never heard of juvenile diabetes and I wonder if it has something to do with our diet, junk food and soda pop. This story about Mary Kathryn is so sad and could have been prevented with a blood test. A blood test should be required for all children when they have a physical just as they do with us adults. Mary Kathryn was such a beautiful little girl and didn't look like anything that serious could be wrong with her. What a tragedy for her parents to go through."

WTF?

This is wrong in SO many ways. I wanted to spit fire, yet at the same time I understand why people are so in the dark about T1 Diabetes. Sometimes it is better left to not say anything to these kinds of comments...but being that she had watched her T1 brother (my Dad) suffer from every complication of Diabetes over the past 2 decades I figured I should stand up for him, instead of allowing blame to be placed on his "diet" for causing his Diabetes....

It was really hard to be nice. What I wanted to say initially was ^*%(&%&*%&% *^(*^!#!#!#!$^%$&^%$ and ^%@^%!^#!@ and $#$#@%#@!@..... but I didnt. I'm here to educate, not let my emotions get in the way. You really can't be offended by ignorance, and that is what this really comes down to, lack of education. So many times I find myself in awe over the comments....the comments that people say. But, I believe if you do your part, one email or Facebook post at a time, we can make a difference. A difference for that one. Save one life....

Maybe a FWD is all ya gotta do to get through.....

7 comments:

Reyna said...

You are doing, as always, a wonderful job educating about type 1 Kelly. What a tragic story...so sad.

htimm=) said...

Thank-you Kelly for spreading the word. I read this story not long after bringing Bekah home form the hospital with her dx of T1D. the story always brings me to tears becuase it is so close to our own. I thank God every day that we were one of the lucky ones to get to bring our baby girl home and we get to count carbs and dose insulin and do all that we can to keep her healthy and happy. If I had read this story before, I might have avoided a PICU situation. I might have taken her in sooner. I can't go back but hopefully I can prevent one more family from going through the trauma of PICU or even worse.

Misty said...

I also read that story this week(maybe from your FB post, who knows?!?!) and it broke my heart. I get that same feeling that I just want everyone I know to hear this story.

It is so hard when we get comments like that. All we can do is keep educating and spreading awareness. Thanks for sharing this story...if it reaches ONE family that otherwise would not have recognized these symptoms it is worth dealing with all of THOSE comments.

Meri said...

I know how hard it is to keep our cool. I'm very proud of you!

One person at a time!!

CraftyLikeLindy said...

I forwarded it. I really need to get a meter so I can test Landon at home.

CraftyLikeLindy said...

Especially since he is now six and all I can think of is everyday him coming home and being so tired that he falls asleep before dinner, the damn sweet smell that always comes back, and the lack of weight gain.....

Heidi / D-Tales said...

Fwd, fwd, fwd!!! I do the same!