When we moved to our new school we were somewhat worried to find out that our son would be the only student with Type 1. However our fear subsided when we met the nurse. She too had Type 1 diabetes! She immediately showed our son her pump and he showed her his and they were quickly on the same page.

For the first few weeks at the new school we felt everything was fine. Our son is quite mature for his age and tends to take care of himself well but we soon found him returning home quite high each day. After some questioning we finally realized that the nurse was correcting his “low” BG ratings with juice. This of course is fine, however, for her “low” meant anything in the 80′s and so our son would be taking in juice and rocketing up to the high 100′s.

We really should not have assumed that just because she had Type 1 that she would manage it the same way we would. In fact, it’s probably safer to assume that everyone with Type 1 manages themselves in different ways primarily because the disease experience is different for everyone.

We’ve decided to manage our son a bit lower with the hopes of averaging around the 90-110 range with an A1C of around 7.0. We do this because we’ve found that our son, when he experiences lows, still does a really good job of identifying it and treating it quickly. He also seems to be able to go pretty low without any real negative effects (like in the 40′s). Of course we don’t want him this low, ever, but having him in the 70s appears to be just fine.

Others however may find themselves completely out of it even in the 60′s and so they tend to manage themselves higher.

After realizing what was happening we simply had a conversation with our nurse and explained what we were trying to do. We also had our son’s doctor reiterate it with a short note explaining not to undertake any ‘corrections’ unless he was under 70.

Once again, open and honest communications has helped to ensure our son’s days are smooth and healthy.

With our son being eight years old and having been diagnosed with Type 1 diabetes just last summer, we were obviously extremely hesitant as we thought about summer camps for him this year. Not only has he never spent any significant time away from home, but with the added stress of worrying about his health, we were resigned to the fact that he would likely not be able to experience the joys of summer camp until later in life.

But then we were told of camps that specialize in adventures for kids with Type 1 diabetes. I did a little research, finding two camps within a relatively short distance from our home, and reached out. The camp we eventually chose was Camp Conrad Chinnock, located in the San Bernadino Mountains in Southern California.

The camp was excellent and completely inspiring. Being our first time, we chose to go to their ‘transition camp’ which allowed both parents and the child to stay for the weekend before setting the child free for the next week. During the weekend not only did our son immediately gain a sense of independence (“see ya!”) but we enjoyed a series of discussions with the camp staff, counselors, doctors and the other parents learning not only about how the camp is run but also what it is like to live with diabetes (note: almost all the staff and counselors have Type 1 themselves).

Of course the experience was valuable to us as parents, being able to ask young adults about their own lives with this disease and being able to learn about other parents’ experiences, but it was tremendous for our son on two levels.

First he got the great camp experience – staying in a cabin with friends, rock climbing, swimming, archery, hiking, all the great outdoors stuff. That alone was worth the money. By the end of the week he was completely exhausted.

But more importantly (and this may not have dawned on him given his age) but he got to meet a lot of other kids going through the same exact issues he goes through. He no longer was the odd kid out. There was no awkward moments where he had to excuse himself to go to the nurses office to get a shot – his whole cabin did this together. He didn’t need to feel shy about feeling ‘low’ – all his friends at one time or another did and all the counselors had testers and glucose tablets on them at all times to help out.

He also got to learn how other kids manage their diabetes. About half the kids his age were on the pump and the others were taking shots. He got to learn about the pump and see how to operate one. And they all learned about carb counting and bolus and insulin calculations.

We are so happy we found this place and so relieved to know that kids with Type 1 diabetes can not only experience a camp just like every other kid, but that they can grow up to be responsible and inspirational people – all the counselors were perfect models of this.

Our son was so enamored by the experience that he asked to go back, so we’re going to send him again in a couple weeks.

Tips for Sleepovers

The following section was taken from posts on the Place for Parents Message Board on diabetes.org. These tips should not replace advice and/or recommendations from a health care provider but reflect issues that parents deal with day-to-day.

“I know my 7–year old daughter who has diabetes will start to be invited to sleepovers soon. Do you let your kids go on sleepovers? How do you deal with it??”

Parent to Parent -

• We have a policy. If our daughter is going through a wacky BG numbers time period the sleepover has to be at our house. No exceptions. We tell her yes, we know it’s unfair, but it is what it is and we have to do what’s best for her.
• If my daughter’s numbers are OK at night, she can sleepover at someone else’s house, but she has to call me at 11:00pm with her BG number.
• We start with only allowing her to spend the night at close friend’s homes. Between her being able to do the BG tests on her own and a parent who is willing to learn what to do in various situations( make a cheat sheet), we feel one’s safe.
• We actually do what we call 1/2 sleepovers for our eight year-old daughter and friend. We do the dinner, get on the jammies, make the snack, watch the movie and then her parents pick her up when it’s bedtime. Maybe that can be a compromise for your daughter, if it works out that she’s just not able to spend the night, for whatever reason
• You can plan to have most of the sleepovers at your house. Set it up so your house is the coolest!

Expert to Parent:

When your child is ready for sleepovers, the thought of a night away from home may make you nervous. But with a little planning and preparation your child can have fun and be safe at sleepovers.

Be sure that the parent of your child’s friend knows your child has type 1 diabetes and is comfortable with a sleepover.

You can help the parent be prepared to care for your child overnight by:

• Providing your contact information so the parent can reach you with questions.
• Making parents aware of your child’s diabetes regimen including food requirements. (A short written summary may be helpful.)
• Making the parent and your child’s friend aware of your child’s signs and symptoms of low blood glucose as well as how to respond to lows.
• Agreeing on an emergency care plan both you and the parent are comfortable with.

Along with their toothbrush and pajamas, be sure your child packs their diabetes supplies. Don’t forget to remind your child to always wear their medical ID bracelet or necklace!

Include:

• Insulin
• Syringes or Pens (and pen needles)
• Blood glucose (BG) testing supplies
• Pump/CGM supplies
• Glucose tablets or other fast acting sugar to treat low BG
• Snacks

Harold Starkman, MD is Director of the BD Diabetes Center for Children and Adolescents at the Goryeb Children’s Hospital in Morristown, NJ.

The California Nurses Organization obviously was quite pleased with the decision as it now appears that only licensed nurses will be allowed to administer insulin injections in California public schools (except in cases where either the individual self-administers or a parent administers).

What do you think about this?

Our own opinion is that this not only severely limits choices that a school and parent has for medical treatment, but it also binds schools to another layer of fiscal costs in a time when our schools (especially in California) are truly suffering.

In our own school, nurses are only on campus and available about 20 minutes each day during lunch. That’s all! Also, the actual nurse who arrives changes each day and we do not have a clear understanding of their schedule so we don’t know who to expect on any given day. Though some of the nurses have been fantastic – caring for our son and another child with diabetes and being proactive to ensure they eat everything in their lunch – others have been downright irresponsible. We have had a number of occasions where my wife (who has been showing up to train all these nurses) has had to hunt the nurse down or has had to keep them there in the office rather than running out “to a meeting”. It has been clear that if my wife was not there these individuals would have left campus without administering insulin.

The reason why there is such a turnover of nurses and limited coverage has not clearly been explained to us, but it is clearly a result of the difficult financial state of our district (the largest in the State) along with a rise in diabetes incidences.

Though we certainly appreciate a well-trained and caring nurse, it has become very evident that just because one holds a nursing license it does not explicitly equate to “well-trained” and “caring”. We would actually be much better off training a single, responsible, caring individual on how to calculate dosage and how to administer insulin rather than rely on the bevy of inconsistent nurses we have now.

Our own view is that this decision is simply a means of maintaining job security for the nurses rather than in any interest for the well-being of our children. Given that there is clearly a lack of adequate nurses in our country these days, this decision can only be seen as narrow and wrong.

I am sure that both the American Diabetes Association and the California Department of Education will be fighting this. We should lend our support.

Read more here: California School Nurses Org Applauds Court Ruling

Not only were we still shell-shocked with the diagnosis and not really understanding of how to manage our son’s condition (turns out what we learned in Thailand was pretty lacking), but we had certainly never had to carry needles onto a plane.

We survived all 17 hours of the flight however and here’s how we did it:

1) Organized: We were very organized with all of our gear and snacks. We separated out all of our needles and insulin (pens and syringes) and we separated out a couple cartons of juice and some snacks. We had all of this in an individual bag.

2) Prepared with Documentation: We had 2 copies of a note from our physician there in Thailand, both in Thai and in English. The note clearly explained that our son had diabetes and that it was necessary for him to take insulin via injection at regular intervals. This note was absolutely necessary getting through security and on-board.

3) Open: We were very open at each stage of boarding our plane. Before getting to the airport we called the airline and alerted them. When we checked in, they saw the note in our file and we once again reminded them of our need to carry needles onto the plane. At security, before getting in line, we alerted the officials and they worked with us to move through the line and the bag checks. When we arrived at the gate we told them once again of our situation.

4) Persistent: When we got to the gate, the cabin crew required us to surrender our insulin and syringes, explaining to us that they would hold the medication with the head crew member. We accepted this, but before the doors of the plane closed, we sought out the cabin crew manager and had her physically show us that she had possession of our insulin. Soon after takeoff, she actually came by our seats and gave us all the medication to hold onto.

Once we were in possession of everything we needed, we simply managed as normal, giving our son his injections right in his seat. And with all long flights, we made a point of getting up and walking around in order to keep our legs and minds fresh.

There were a lot of steps to go through to get our insulin on a plane, explain our situation to the airline, and ensure we could manage our son’s diabetes in a normal fashion. But with a little forethought and persistence, we found that traveling with diabetes on a plane was not that difficult.