Sudden Onset Juvenile Diabetes
One Family's Story
This is the story of a family's whirlwind of an experience with their 6 year old daughter's Sudden Onset Juvenile Diabetes. The mother, Deb, is the strongest, most amazing woman, and after everything she has been through wants to help prevent her experience from happening to other families.
I met Deb through an online message board filled with mothers of every age. I've been a part of it since my own daughter was about a year old, in 2002. I'd been on and off the site over the years, and the most recent event that brought me back was reading the posts of Deb about her beautiful little girl Mary Kathryn. She's let me share her words with you here.
This is so important for parents to read, but I must warn you to have tissues handy.
02/02/09 7:22 AM
My little girl, Mary Kathryn died yesterday...
She had been feeling droopy for about the last week. I thought that it was just the start of some kind of bug that was going around. But, by Saturday, she had gotten so weak that I took her to the ER. Come to find out she was a diabetic. It had come on suddenly and no one else in our family has diabetes. She had started drinking more, but I thought it was because she was just sick. They were never able to get her stabilized in the hospital and due to the fact that she was so dehydrated it caused her brain to swell and herniate. She became brain dead at that point and lost to us. My precious baby, Mary Kathryn Elizabeth, I don't know how I can make it without you!
03/12/09 7:33 AM
I'm posting this article here. I wrote this piece on Monday evening of February 23rd. It's something that, at the moment, I felt compelled to write. It was published in our local paper on Saturday, March 7th, in conjunction with an article that the editor did as a follow up on Mary Kathryn's organ donations. I've also shared this article with Lit and she wants to use it for her community newsletter that she publishes. I have had so many people approach me in just the last few days since this was published, thanking me for making them aware of this disease.
This is my article:
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.
Mary Kathryn MemoriesClick thumbnail to view full-size
1. Age 2 1/2
2. Mary Kathryn's Hugs & Kisses Home
3. Age 4 (almost)
4. Swimming at their boathouse with Mommy as the lifeguard.
6. Mary Kathryn's Artwork
7. Mary Kathryn and her cousin.
03/12/09 9:28 AM
I really don't want any other parent to go through what we have...it IS so unfair. If I had only had this information, things may have turned out differently for us. That is something that I will truly never know, but if this account will help anyone else, I want everyone to know it!
As everyone has said, this did happen so incredibly fast. But also to emphasize how deceptive this disease can be, I'll share another story from a well respected doctor in our community. He had a 12 yr old patient present to his office complaining with a sore throat. By all appearances to him, she had a sinus infection, so he gave her an RX for antibiotics and sent her home. On the following Monday, he found out that she had been admitted to the hospital over the weekend with Sudden Onset Juvenile Diabetes. Talk about someone kicking themselves...he has! He immediately went about educating himself about this horrible, insidious disease, so that in the future, hopefully, he won't make this same mistake.
Frankly, I think it all comes down to making a blood glucose test a standard protocol at the dr's office. With as many new cases of Type 1 diabetes being DX every year, it seems almost criminal to turn a blind eye to this particular "snake in the grass". Enacting this protocol would have a double benefit, 1st obviously being the patient's health in not getting into the state of DKA that Mary Kathryn experienced and 2nd, it would certainly be a lot cheaper on the Ins. companies, in that they wouldn't have to pay the high costs of ER and ICU admittances. All of this compared to the fee for a $12.00 blood test at the dr's office. Just my 2 cents worth...
03/13/09 7:33 PM
Please share the story with everyone. I just sent out an email to everyone on my list and asked them to do the same and to ask their friends to do it as well and so on. I'm also trying to get the article published. Parenting has already agreed to take a look at it and I've contacted O magazine (Oprah's mag) as well...still waiting to hear from them on submission protocol. So, we'll see. I've had a blogger...someone that I don't even know, that wants to post it on his blog and send it to all of his blogging buddies for a wider coverage.
I'm sorry, but I think my experience was so unnecessary...in this day and age, it's reprehensible that the manifestation, signs and symptoms are not widely known and talked about. I was in my doctor's office last week with one of my sons and as I was waiting, I looked around at the pamphlets discussing all types of health issues...Type 2 Diabetes being one of them, but there was no pamphlet about Type 1 Diabetes. Is that crazy or what? This is the proverbial "snake in the grass" and we're pretending it's not even there...
"Juvenile Diabetes can mimic other common childhood illnesses, so it's very important to pay attention to the symptoms that your child is exhibiting."
03/27/09 1:17 PM
My local paper is going to carry this follow up to the previous articles about my daughter. This one deals more with the signs and symptoms of Juvenile Diabetes as I'm constantly being asked what they are. I was talking with a nurse earlier in the week and I was giving her instruction on the signs and symptoms...that felt kind of odd to me, but I was glad to tell her what I know. Anyway, feel free to send it on to any of your friends that might have a need for the information.
Education and Vigilance Needed for Juvenile Diabetes
In sharing our story with other parents, some of the most common responses they have given to me are, "Your story scares me to death." "How can I, as a parent, know when I should be worried about a symptom?" "Because of what has happened to you, it makes me want to take my child to the ER every time they have so much as a sniffle!" A parent's first line of defense against Juvenile (type 1) Diabetes is education coupled with vigilance.
Let's get educated. Unfortunately, Juvenile Diabetes can mimic other common childhood illnesses, so it's very important to pay attention to the symptoms that your child is exhibiting. If your child exhibits any of these symptoms do not hesitate to take them to your doctor.
Recognized Signs and Symptoms of Juvenile Diabetes
* Rapid Weight Loss - is often the most noticeable symptom.
* Extreme thirst - is not unusual in children, especially in warm weather. Also, once children are old enough and tall enough get water themselves it can be difficult to monitor their fluid intake.
* Frequent urination - this becomes more obvious to parents if traveling with children, but just around the home it can be difficult to spot.
* Eyesight or Vision Changes - should not be attributed to too much time in front of the television or computer screen.
* Sweet smelling breath - may be noticed by parents, but can just as easily be attributed to something the child has eaten.
* Increased appetites - may be evident, but of course children are growing and can have large appetites.
* Lack of energy or even drowsiness - unless excessive, may go unnoticed. Many children now lead very sedentary lifestyles and lethargy may simply not be noticed.
* Heavy, labored breathing - another symptom which can be masked by any number of respiratory problems which seem to be more prevalent in children (i.e. asthma).
In this busy life that we lead, we have to be aware of what is "normal" for our child. Does the child typically rest or seem tired during the day? Do they normally drink a lot, or is this something new? Is the child dieting and purposely trying to lose weight? This is where parental vigilance comes into play. Don't just dismiss unusual behaviors as simply a child being a child.
The doctor that treated our daughter told us that Mary Kathryn had been having difficulty for 3 months. The doctor could tell this by some of the tests that she had performed. Upon reflection, after the doctor revealed that information to us, I could remember that Mary Kathryn had started drinking more during that time frame. Not substantially more, but just enough for me to notice and dismiss it as something that wasn't alarming. After all, I usually sip on something frequently throughout the day so I thought she was going to be like me.
In Juvenile Diabetes, there DOES NOT have to be a family history of the disease. It strikes suddenly and without apparent warning. However, once there is a diagnosis of Juvenile Diabetes in a family, the risk to other siblings is increased and those children should be monitored.
Within a few weeks of Mary Kathryn's death, I had purchased a Glucometer, the blood test strips and Ketone Urinalysis strips to have on hand. I purchased all of these items at WalMart for just under $50. None of the items require a prescription. I've tested our whole family and will continue to do so, because you just don't know. You can also have your doctor perform this test in his office. It's quick and inexpensive and will let you know almost immediately if there is a problem.
Education is our only weapon in combating this disease. It is so important that we try to bring about a change in how this illness is diagnosed. With all the medical advances that have been made in the world, it is unfathomable to me that there is not a more proactive way to combat this illness. Whether it's a need for more information in the doctors offices or mandated blood tests to help with early diagnosis I don't have the answer. All I do know is, that not so much as a whisper about Juvenile Diabetes, the signs or symptoms of this disease, has ever mentioned to me during routine doctor visits or at any other time. I was aware of other kids having Juvenile Diabetes, but I assumed it was because one of the parents had the disease or there was a family history of it somewhere in their family. Obviously, it was just a lack of education on my part.
It's my hope that this article will further help educate parents about this disease. In the end as parents, our most precious gift is our children. Our wealth is not in the amount of money we have or our possessions, it's in the lives of the children with which we've been entrusted. Whether they're our own children or those that we've been fortunate enough to have been allowed the time to share in their lives, children mold us every bit as much as we try to mold them and they leave an indelible mark on our lives that will forever remain.
Please Print and Share!
Deb has created an information sheet to be used in her local schools and doctors' offices. You are welcomed to download the .pdf and print them for distribution in your community. We can all help raise awareness of Sudden Onset Juvenile Diabetes.
This link will open an 8 1/2" x 11" document ready for printing.
- Mary Kathryn St.John Type 1 Diabetes Awareness Initiative
The Mary Kathryn St.John Type 1 Diabetes Awareness Initiative on Facebook.
- Children with Diabetes Forums
The online community for kids, families and adults with diabetes.
- Juvenile Diabetes Research Foundation International
The mission of JDRF is to find a cure for diabetes and its complications. It is the largest charitable funder and advocate of diabetes research worldwide.
- The Faustman Lab at Mass General
Current research focuses on uncovering new treatments for type 1 diabetes.
- Help Cure Childhood Diabetes
This site was created for parents and families to coordinate and join together in a grassroots movement to fund the best medical research to end childhood diabetes.
- When the Worst Happens
When the Worst Happens: Dealing with loss. By Michelle Alswager
Required Reading for Parents
Angels Taken too Soon
Shannon Lynn Collins
April 02, 1992 - July 03, 2011
September 28, 2006 - August 18, 2011
June 19, 1994 - November 8, 2011
If you have lost a child to Diabetes and are looking for a place of support, you are welcome to visit Blue Candle a private section of the Children with Diabetes Forums. Deb is the moderator there.
"I am thankful that in my days of despair, when I didn't have the strength to pray for myself, others were praying intercessory prayers for me. Others, who had walked my path before, stepped forward to help guide me through and let me know that I could survive..just as they had. It's the strength derived from those friendships and prayers that have kept me going, without a doubt. That's why this 'Blue Candle' forum is here. To help other parents who have lost children to this disease and help shepherd them through their grief."
~Prayers for peace,
"Last week I searched the web looking for a clue as to why my daughter was drinking so much, losing weight and suddenly had become so weak. I read your blog and immediately took my child to the ER where she was in severe ketoacidosis with a blood glucose of 513. THANK YOU< THANK YOU. You saved her life."
Posted in guestbook July 12, 2009