School Involvement

My son loves school and I wanted to get him back into his normal routine as soon as possible. 

He felt fine and I wanted him to have a sense of normalcy and not feel isolated because of his illness. He needed to know he was the same little boy he was a few days ago only better, healthier. I packed up his testing kit, strips, needles, insulin, and orders from his pediatric endocrinologist and took him to school.

The fact is, he can live a fairly normal life with proper care and continual monitoring of his blood sugar. It'll will be a labor of love for sure, but definitely worth it.

My husband and I paid a visit to the school nurse and informed her of Sawyer's situation and gave her the instructions that we'd received less than 24 hours ago. There is a period of adjustment in getting his sugars stabilized and knowing how much insulin will work for him. 


With his blood sugars in the sixties at lunch time, we worked out a plan with the nurse to schedule a snack for Sawyer in the morning. He still had lows and had to have treatment. The scary thing was he had no hypoglycemic symptoms. 


Generally, a person who is experiencing low blood glucose will exhibit symptoms such as shakiness, rapid heartbeat, sweating, dizziness, anxiousness, hunger, blurry vision, weakness or fatigue, headache and irritability. When this occurs, the person will need to check their blood glucose. If it is under 70 and they are not unconscious, they should be given 4 ounces of fruit juice, 4-5 pieces of hard candy, or 3-4 glucose tablets. After twenty minutes their blood sugar should be re-checked. It should have increased by 40 points. If not, treatment must be repeated. NEVER give food or drink to anyone who is unconscious. If you do not have access or training on how to administer Glucagon, call 911 immediately.

I learned through this experience that there is legislation that protects children with disabilities from discrimination at school, both public and private, and daycare facilities. (This excludes religious schools who do not receive federal funding).

According to Section 504 of the Rehabilitation Act of 1973, "Students with disabilities have a right to a 'free, appropriate public education' without discrimination." Additionally, children in private schools and day care centers fall under this umbrella of protection. These rights are protected by the federal civil rights and education law.


We didn't experience any troubles with our school and, in fact learned that the nurse took the initiative to consult with the principal and trained the high school nurse on the procedures necessary in the event of her absence. She also spent time researching information, on her own time, to get up to speed with his treatment and administration of shots. (Thank you for caring!! ♥) Nurses Rock!!

Section 504 "protects individuals with disabilities against discrimination in any program or activity receiving federal financial assistant." 
Parents have the right to develop a Section 504 plan with their child's school. School's failure to comply with the law can cost them federal funding.
Parents/guardians of a child with a qualifying disability have the right to meet with school staff and administrators to explain the condition at one meeting and put together a plan that best suits the need of their child. Section 504 ensures the child's right to participate in all activities without feeling 'different' from his classmates.

Your child spends most of his/her time under the care of the school. It is vital to maintain close contact with the school nurse and those who will be caring for him/her when you can't. It is a relationship that will benefit your child and their overall well-being.




More information regarding your child's civil rights can be found at the Web site of the U.S. Department of Education, Office of Civil Rights: www.ed.gov or toll free at 1-800-421-3481. 




*Photo courtesy of cuddlebugs.onslow.org
**Information obtained form American Diabetes Association and "Safe at School" pamphlet

The Diagnosis

My life seems surreal to me.

Everything that is happening must be just a dream that I will awaken from. I'm going through the motions not really taking in that this is our life now.

We spent seven hours in the emergency room the night we rushed Sawyer to the hospital, waiting and not knowing what would happen next.

He was finally seen by nurses who inserted an IV and got him started on fluids. This process brings down the blood sugar levels without doing it so fast that it shocks his system. Once they had it down some, they gave him some insulin.

It was 1:30 in the morning when we finally got Sawyer to a room. There was one pull out bed in the room. Barely able to keep our eyes open, I zonked out on the bed while my husband went to a lounge and did some office work.

There is no such thing as sleeping in at a hospital. Awake at 6 am like usual, I got up and took Sawyer to the play room that he'd been told about the night before. The thought of this playroom held his interest all through the night and he was not disappointed.

We still hadn't seen the doctor. We were tired, stressed, and in the dark about what was going on. Our pediatrician's office back home had told us it would be one night at the hospital and now the nurses were telling us two. We hadn't prepared for that. We had obligations at home.

The staff of nurses and diabetic counselors were excellent. They got us through six hours of diabetic training in that one day. They were doing everything in their power to get us out that day.

We practiced checking blood sugar levels by poking our fingers and reading the meter. We learned how to formulate how much insulin to give to Sawyer by adding the carbs he would be eating at his meal. This number is then added to another number for 'correction' of blood sugar over 250. Also, we had to learn how to administer a shot. There was a video about what to do in the event of an insulin reaction. Scary stuff right there. If this ever happens to Sawyer we are now equipped with a shot for the life threatening situation. In fact, we couldn't leave the hospital until we had a Glucagon kit.

It was lunch time before we met with the pediatric endrocrinologist. She informed us that Sawyer has type 1 diabetes. Treatment is four shots a day; one long acting insulin and one short acting three times a day before meals.

Diabetes is an expensive disease to maintain. Not only is insulin needed, but also the needles to administer it, test strips for the testing machine, lancets, alcohol wipes, ketone strips, regular doctor follow-ups, and enough healthy food on hand to ensure a consistently well-balanced blood sugar.

My mind was reeling. And still is.

Armed with information on the disease, medication, and a network of support we left the hospital in hopes of doing a good job keeping Sawyer healthy.

So far, it's been going well. Sawyer's blood sugars have been well under control and we're getting pretty good with a needle.

Sawyer wants to have an active role in his own care. He reminds me to check his sugar at 3 am, he can poke his own finger and check his sugar, and he knows he cannot have a snack higher than 10 carbs without an injection.

I'd say he's adjusted quicker than his parents.


...Next Time...Getting the school on board with Sawyer's treatment.

The Beginning

It came on suddenly. Nothing could have prepared us for what was about to take place in our son's body. There wasn't anything we could have done to prevent it. As much as we love him and do our best to protect him from the evils of this world, this attack came through the back door.
The word I have hated my entire life, diabetes, hit home with it's attack on my seven-year-old son.
It began with frequent trips to the bathroom and a constant thirst. This is a boy who we had to remind to drink his required intake of water. A child who rarely had to run to the restroom. Suddenly, he is saying, "I'm thirsty" on a continual basis.
I'm no stranger to diabetes. I grew up with a grandmother who had the disease and had spent time in the hospital. Then my father (not grandma's boy, but on the other side of the family altogether) ended up sick and in the hospital where he was diagnosed with diabetes. Again in high school, my best-friend had what they once called 'Juvenile diabetes'.
In October of 2007 I was also diagnosed with the disease.
As if this wasn't enough it made another appearance in my life.
Last week, Easter Sunday, I noticed my son's incessant thirst was profound. He drank from the drinking fountain until I had to intervene and tell him there was a line waiting to get a drink. I asked him if he had to go to the bathroom before we left church and he said he didn't have to go. Five minutes down the road he said he had to go and couldn't hold it.
When we got home, I used my blood testing kit to check his sugar. I almost hit the floor when I saw the number. 519.
No. No. This can't be. Not my little boy. Hadn't he just turned seven only a month ago? He's too young, yet in the back of my mind I knew my little guy's life was about to change as was the entire family's.
I put a call in to his pediatrician and the nurse practitioner quickly returned my phone call. First, she asked if my test strips were old. Uh, no. I have to purchase them every month. Hmm. Well what has he eaten? I told her he had waffles for breakfast. Oh, that must be it, she says. All that sugar in the maple syrup. Why, I don't even allow it in my house.
Okay, so now I feel the guilt of letting my children have maple syrup. How could I be such a horrible mom and bring that poison into my home.
I question the high blood sugar number of 519. Shouldn't a non-diabetic be able to process that waffle and maple syrup? It had been over 3 hours since he'd eaten.
Oh, that's normal, she tells me. It can be that high in a non-diabetic after eating that high carb maple syrup.
Funny. My husband can eat two cinnamon rolls and be 114 an hour later. This doesn't seem right.
She suggests I check his fasting blood sugar in the morning.
I did.
It was 397.
Not good. Even my little Sawyer looked at the number on the display and said, "That's not good."
The next day I called his pediatrician and got him in to see the doctor.
He wasn't concerned. He told me it was probably a virus that kids get this time of year.
???
He said it's very rare to see it in kids this age. Not unheard of but rare.
Okay. Just do the blood work I say.
The next morning my little boy has to give up three vials of his blood. He was so brave and I was proud of how well he handled the needle in his arm. That's scary for some adults.
The pediatrician called back that afternoon and said that my son's A1C was elevated to 8.3. A normal A1C is under 5. They were sending the information to Children's Hospital and they would probably get back to me in a couple of days.
Seemed a little long to wait.
I was right.
The pediatricians office called back shortly after speaking with me and told me the pediatrician endocrinologist at Children's Hospital wanted us to get Sawyer there that night.
Twenty minutes to make arrangements, pack, notify our children and other obligations and head out the door.
That was the beginning of our journey to discovering that Sawyer had type one diabetes.
There is a lot to catch up on and I'll try to do that over the next couple of days. It's a lot to absorb, I know. We are still adjusting.
We are grateful there are treatments. Before insulin was discovered people had no hope of a long life. They died within 3 to 4 years after getting the disease. Thanks to the Canadian scientists Sir Frederick G. Banting and Charles H. Best who discovered insulin in 1921, diabetes is no longer a death sentence. A person with diabetes can live a long and productive life.