Thursday, November 7, 2013

Type 1 Diabetes - The Kids Were Old Enough to Know Something Was Wrong

Today I am sharing the stories from two T1 Moms, about how their children were diagnosed with diabetes. I opted to run them together because there were so many similarities in the stories.

The lessons to take away here are these: know the symptoms and understand that most of them are totally non-specific, when in doubt always always always just go to the doctor just in case it is something to worry about and never underestimate the ability of a child to tell you that something is wrong.

I love both of these ladies, and they have both been tremendously supportive to me and my son in the past year. With love and respect, their stories.

During the Christmas break of 2011, my son started to have issues with his stomach. Food started to not settle. Anything touching it, would come back up or hurt staying down. Should have been the first red flag. I didn't know. The month or so following that break, he spent either in his room sleeping or at school. He was 12, I thought he was either having a growth spurt or puberty was showing its ugly head. So, when he started losing weight because of the lack of desire for food and sleeping all the time, I blamed puberty. Second red flag. I didn't notice more thirst. I didn't notice more bathroom breaks.

February 6th, 2012. I got a phone call from the school nurse. She told me that she had a talk with my son. He had come to see her by way of the school psychologist. I found out he had gone to see the psychologist because he didn't feel well and he didn't think we (his parents) were listening to him. So he did something about it. And the psychologist took him to the nurse. Who in turn, called me at work. We talked about what was going on. I told her what I thought was going on. Puberty, and maybe a cold? I didn't know, so I agreed that he should be seen by his doctor. I got off the phone with the nurse from school and promptly called the doctor. That was a Monday. He got an appointment for Friday, February 10th.

I took him to the doctor. Told him all the things going on, and he ordered blood work and urinalysis. Now, my son is terrified of needles. Especially shots and draws from the arm. This was agonizing for him, damn near panic attack. We went back to the exam room. We waited. We joked. We laughed. Then the doctor came back in. He looked at my son. He looked at me. Then he said that my son was in something called Diabetic Ketoacidosis. And we needed to go directly to the Children's Hospital. Essentially his body was eating itself to keep going. My heart stopped. My brain exploded. My perfect baby. My 12 year old son HAS DIABETES.

He was in the hospital for a week. It took that long to bring his numbers down. And to educate him, as well as us. He learned what to do and when. He learned from endocrinologists. He learned from dietitians. He talked to pediatric psychologists. The Children's Hospital was AMAZING.

HE SAVED HIS OWN LIFE. HE did it. He talked to people until someone heard him. And for that I will forever be grateful.

Things don't always present with clear cut symptoms. Excessive drinking and peeing are classic indicators. But I didn't see them. I missed the other flags. I missed it all. I failed my son. My guilt over my part will never lessen. But my pride in my son? Never will diminish. He is amazing. He can calculate his ratios in his head, without a calculator. He still panics with a shot, or IV, or blood draw. BUT he does his testing on his fingers for his daily testing with no issue. Yes, he hits bottom from time to time. Yes, his numbers go all wonky when he's sick. BUT this is not the sum of him. He is NOT defined by his pancreas's inability to produce insulin.

- Anonymous

My daughter, Laura, turned 11 on February 11 2010. She played softball on 2 teams. The little league and a travel ball team. One Saturday in March she came to me carrying a laptop and crying. When I asked her what was wrong she showed me the web page on the laptop. It was web MD's symptoms of type 1 diabetes. 

She told me that she thought she had diabetes and she was scared. 

I read through the symptoms rationalizing each one for her. She drank a lot of water because she did softball practice/conditioning almost all year round. She went to the bathroom a lot because she drank so much water. Tiredness was also a result of softball. Her skin was breaking out because puberty. Don't worry, I told her. You are fine. 

The following Friday we were at softball practice and I had been noticing for a couple days that she looked taller or thinner. I asked a couple softball moms if they noticed the change in Laura. All the moms agreed she looked different. Laura was also white as a ghost. It was flu season, but I had gotten her the brand spanking new controversial swine flu vaccine a few months before because people were in a panic. Children were dying from that flu! So, I quickly ruled out the flu. 

While practicing it became obvious that there was something not right. She was slow and clumsy. She kept stopping to go to the water fountain in the gym. She was gasping for breath. The coach called a break and Laura came to get a bottle of water. She was shaking so bad that she spilled it down the front of her trying to drink it. The other moms and I looked at each other. One mom then told me Laura had been giving her food away at school. She hadn't eaten lunch all week. Immediately, I thought anorexia and I was scared. The coach's wife had a bag of peanut M&Ms and offered some to Laura. She ate a few, but said she didn't feel well. I decided we would leave practice early, and I told Laura that I wanted her to eat dinner. I would buy her whatever she wanted as long as she would eat. She chose peanut butter and banana sandwich with strawberries on the side. She ate half a sandwich and a few strawberries and went to bed. About 1 AM she woke me up because she had vomited. She was upset because she didn't make it to the bathroom in time. Of course I told her it was all right and got everything cleaned up. 

I knew for sure then that she had the flu, and had never been so thankful for my kid to have it. Saturday morning she woke up, ate a handful of dry cereal, and drank some ginger ale. She said her stomach felt better. I thought everything was A OK. About 20 minutes later she came to me shaking uncontrollably. She said "Mom, I'm shaking and I can't stop and I don't know why." I put her in the car and drove as fast as I could to the nearest hospital. 

By the time we got there, Laura's speech was slurred and she couldn't pick her feet up off the ground when she walked. The ER took her straight back, and instead of a nurse asking questions there was a doctor. I had to sign forms for spinal taps and blood work and god only knows what else. They hung an IV of fluids and drew tube after tube if blood. 20 minutes later, a nurse came in and said they had to stop the IV. I asked why and the nurse said that the doctor would be in shortly. 

When the doctor came in she told me my daughter's blood sugar was over 600. Her potassium was off, her blood pressure was high, her heart rate was too fast, she was in DKA. My daughter was dying right in front of my eyes. By this time she was in and out of consciousness. The hospital we went to did not have a peds endocrinologist so Laura had to be transported by ambulance to a children's hospital 2 hours away. 

We spent 5 days in pediatric ICU learning how to count carbs and give injections. It took those 5 days to clear the ketones out of my daughter's system and to get her potassium back to normal levels. It has been almost 4 years since her diagnosis. She is still deemed "uncontrolled" because her blood glucose levels swing from high to low to back again. 

A few years ago she would have been called a "brittle" diabetic. She has not let diabetes stop her. The day after she was released from PICU she went to softball practice. I will never get over the guilt of not believing her when she came to me with that laptop, but who would have believed a 11 year old could self diagnose Type 1 diabetes? Who wants to believe their child has an illness that can kill them without rhyme or reason? 

For the record, Laura had a physical in January for sports. She was given a clean bill of health. I recommend asking your pediatrician to do a simple finger stick if you suspect type 1. So many children die because they go undiagnosed. I would have lost my daughter if I had waited one more day. If you can't get your doctor to do a finger prick, go to Walmart and buy a blood glucose meter (Walmart has their own brand that is very inexpensive and the strips are as well) and do your own finger prick. Be proactive!! Be aware!! Don't let your child become a statistic like I almost did.

- Jerri Lynn

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