Unfortunately my seven year old was diagnosed with type 1 diabetes last month. He's taking it extremely well, much better then I am, although I'm adjusting. (I've had type 2 for a while now, but I'm learning how radically different the two types of diabetes actually are.)

The hospital and health plan company set us up with prescriptions for the various supplies he needs, and I'm doing what I can to pre-load as many months of syringes, test strips, etc. as I can. I was wondering if there are T1 diabetics on this list, or family members that you plan for in emergencies -- what changes to your BOBs and ready/car kits did you make? And if there is further advice about handling his condition in emergencies/unplanned situations?

We've bought an extra blood glucose test meter to keep in the car and we're stashing candies, juices and sugar-boosting stuff everywhere we can think of. I'm guessing the biggest concern is obtaining insulin. He takes a mixture of rapid-acting and slow-acting insulin in a syringe 3x/day. The insulin comes in little glass vials and (unused) last up to a year. Once opened to use, they will last two months in the fridge, and one month at room temp.

Any real-world examples that you know of that I can look up? Any advice appreciated. Thanks. -Gary

I am a retired school administrator, and I strongly suggest that you meet with your son's teachers and school principal to discuss his condition. Most schools have one or more students who are diabetics, and you need to be sure they understand your son's particular condition and their role in insuring his needs are met while he is in school. If his school has a nurse, so much the better, but everybody in his school setting should be aware of his particular needs.

Also, I suggest you obtain some kind of medical identification bracelet or dog tag that identifies him as a Type I diabetic and that has emergency contact information. I wear a medical ID dog tag that I had made by a company that specializes in dog tags. It is red with an appropriate medical symbol on one side and medical details on the other. It was much cheaper than the specialized tags available from Medic Alert and others.

Gary,
I am married to a Type I diabetic, and I sincerely and strongly urge you to seek the counsel of a Diabetes Educator and an Endocrinologist, not a regular RN or Doc. The difference is amazing. My wife has had Diabetes since age 11 and is now 47 and under the care of the right folks finally after a near fatal accident due to a low blood sugar episode. The incident was caused by the previous MD changing her insulin type and regimen and NOT relating all the facts about the speed in which it would drop the blood sugar level.
If your health care plan will cover the expenses, I urge you also to investigate insulin pumps with the continous glucose monitoring capability. This is cutting edge technology and is proving to be the best thing my wife has found as far as control. However,(always a caveat)this is some major expensive stuff, $10K + not including all the reccuring monthly accessories. Some insurance plans won't cover this yet.
Best of Luck to your son and to you as well.

Sorry to hear that. I have no diabetics in my family, but over the years I have run into quite a few who got into trouble by not keeping on top of their diets, tests, injections, etc. That is not good...

It sounds like you are already well on top of it. Here are my thoughts, which you probably already have covered:

There are disposable meters that come with a supply bottle of test strips, with the meter built into the cap. They make handy backups, and can be given out to others who may have temporary care of your son frequently or in an emergency.

It might be a useful review for you and your wife to take a full diabetes education course.

Keep photocopies of your Rx's and medical records, and ask your son's doctor for an "emergency" Rx for all insulin and supplies, kept unfilled, and replaced every six months. This will be very handy in a disaster. Although you can still get diabetic stuff in an emergency, this can cut the hassle, and having a recent unfilled Rx will let you conveniently restock at the first open pharmacy you come to.

Look into portable electric or evaporative coolers for emergency/disaster and travel storage.

Make sure your son wears a medic-alert device and that his teachers, relatives, and friends' parents are all aware of what to do in an emergency.

Obtain and learn how and when to use a Glucogon injector from your doctor, for emergency treatment of hypoglycemia when the patient is too unresponsive to safely ingest carbs orally.

Keep plenty of glucose tabs handy in various places and pass them around. I prefer these over ordinary sweets because you know just how many carbs you are giving, and they are less likely to get accidentally consumed.

Investigate some of the diabetes management software now available, like that from One Touch, which can download data from a meter.

Have an Endocrinologist manage his diabetes, rather than a GP, at least initially.

Jeff

Gary,

+100 on the pump if you and/or your insurance will cover it.

I coached a young boy on my son's hockey team who was constantly "sick". This was an issue that the GP chased after for about 6 month to a year before they went to an Endocrinologist. Starting out, he was not doing well managing the disease with injections. Once he moved to the pump it was awesome.

The other thing I wanted to mention is different JR Diabetes Camps. This young man has been going since 1999 and loves it. There is fun combined with education and counseling.

Having mentioned counseling, that might be something to look into over time. Both the boy I mentioned and one of my daughter's friends have dealt with occasional bouts of true clinical depression worrying about the disease.

I will be trying to contact some of the folks of these kids, and see if I can get you more ideas.

I wish you and your family good luck.

PS. Sorry I am rambling, my two German Shepherds are wrestling with my while I am trying to type.

This is probably the best advice you can have. As a type 2 who now injects 3x a day, I suffered for some time feeling sick every day. The pills were not working and my (former) Doc just kept upping the dosage and switching to the next new pill. The side effects were getting really bad.

Finally, I got smart and went to one of the top endocrinologists in the area. I wasn't in his office 15 minutes when he was injecting me. Within hours I felt fine again, the first time in ages. No more pills for me.

One thing, if you are in a location where you can see someone in a University/Medical School, this can really help too. My guy is and thus is up to date on the latest of everything. It makes a difference.

As for storage of insulin, read the detailed sheets that come with the vials, and do some research on the net. Depending on the exact type, you may, in an emergency, be able to store it for several days at room temp, or by using evaporation of water (e.g. wrap it in a wet towel) to cool it. Not ideal, but it can help. But remember also that insulin degrades in sunlight and degrades if excessively shaken. I store mine in the box in a quite part of the fridge.

Hope this helps, and good luck.

While I have no direct experience with diabetes my brother has been handicapped for well over 20 years. As bad as the situation may look, it always helps to maintain a positive attitude. Looks like you're getting good advice from all the fine folks on these boards already so let me just wish you good luck and all the best to your little one!

Thanks for the advice. We're working through the Children's National Medical Center in DC (that was the hospital he was evac-ed to the night we took him in) and we're in the midst of the full program there, with multiple all-day training sessions and calling in his blood sugar levels every day. I think my brain's still throbbing from yesterday's training session though. 8-)

I picked up a One Touch Ultra Mini meter from the pharmacy for $20, it uses the same test strips as the main meter we're using. I put that and a bottle of 25 strips in my truck's mondo FAK. I'll look into the disposable ones too, thanks.

Great idea about the little 12V portable fridges -- we have two them -- a tiny one and a bigger one, although we've never used them to this point. I'll plug in the little one and see how well it works. We've learned that unopened insulin vials are good for a year (is that refrigerated or in general?) and once they've begun to be tapped, they'll last up to 2 months in the fridge and up to a month at room temp.

My wife is pushing for the medic-alert bracelet or necklace. I agree with her, but I'm not sure at 7 that he's mature enough to wear it properly all the time. Right now it seems more likely to end up shoved under the bed...

Same thing with the insulin pump... He's basically not ready for it yet, as the program doctors want him to graduate to a basal/bolus injection protocol and see that he can handle that for a while before they consider the pump. I'm just glad we have good insurance with my wife's federal job -- those insulin pumps are $5K and up.

We have two of the Glucagon red injectors, one went to the school. Two more should be coming later this month. Those injectors are expensive too -- $175. We might have to game the system abit to get a hold of a few more of them. It seems like something I'd like to keep in my emergency kit.

Thanks for the advice about the glucose tabs. We've been using apple juice but it seems like common sense that nobody is going to confuse labeled tablets for candy!

It seems overwhelming at times, but at least we've got options they didn't have years ago. This disease was an immediate death sentence 100 years ago, and I'm certainly grateful he's still here and otherwise healthy.

Again, thanks for the advice, and as far as being equipped to survive with my son's having this disease, it looks like we just added a half-dozen items to my checklists...

As far as I know, all insulin must be stored refrigerated, even new from the maker vials. Pharmacy's store it in a fridge and when I get my mail order shipments, they come in an insulated pack with some of those reusable frozen gel packs. I have now a nice collection of the gel packs and keep a bunch in the freezer for the times when we lose power.