Son just diagnosed w/Diabetes - what advice can you offer?

[RamseyTrio]

Hi there - This past week our DS7 was diagnosed w/type 1 diabetes. He gets tested 4xday and insulin shots before b'fast and dinner. We have our trip coming up in late Sept. and were wondering what advice you guys could offer up - any tips, services, etc...that we should know

Thanks a bunch! Knowing as much as we can in advance will make it SO much easier

 

[Selket]

I'm very sorry to hear that your son was dx'd this week with type 1. My son William was 26 months old (March, '04) when he was diagnosed and he's about 3.5 yrs old now. We've learned so much over the past year and it does get easier. The first few months are tough though. William was on shots until Oct. '04 and he started pumping. We LOVE the pump and I highly suggest you begin looking into it. It isn't a perfect solution but it is much better than shots and you actually can eat almost like normal.

Be sure to check out the Children With Diabetes website at http://www.childrenwithdiabetes.com There is a ton of good information there and the chat is a WONDERFUL place to talk with others parents and get advice and tips. CWD also has an annual conference for parents and children with diabetes called Friends for Life and it is being held this year at WDW. It is in July and you can find the info on the website. I've heard it is WELL worth it if you can make. I went to one of their pumping conferences last September and it was awesome - very helpful. Next year's FFL is at Seaworld in Orlando and in 2007 it is back at WDW at the CSR.

Some books that are very helpful are Sweet Kids, Using Insulin, Pumping Insulin and Understanding Diabetes (Chase is the author of the last one). The entire text of Understanding Diabetes is online at http://www.uchsc.edu/misc/diabetes/ud10.html - some people call it the "pink panther book" cause it has the pink panther on the cover. All of those can be found at amazon.com among other places.

As for touring WDW the biggest problem will be the heat. Be sure to care some fast acting sugar with you at all times and we found it helpful to make priority seatings so we had a cool place to dine and generally could eat in a timely manner. Take breaks and you may need to test more often than usual. You can also store insulin at the first aid centers in the park or carry it with you in a cooler - which ever works best for you. You can also talk to Guest Services in the parks and request a Guest Assistance Card for waiting in a cooler place. You might also want to rent a WDW stroller if that would help if he tends to go low. Being in the heat can be hard on the younger ones with diabetes.

Any questions feel free to PM me - good luck with everything and hang in there!

 

[PigletsPal]

My middle DS was dx. @ age 8-8 years ago and we've been to WDW a few times since then. We let them know he is a IDDM when I've booked the room and they will have a sharps container for you. Also don't be surprised if his sugars run high while you are there, so make sure you bring extra supplies in case that happens. When you make ressies for the rest. tell them and give them a reminder to the waiter/waitress when you are seated. WDW is very good about working with you and we've had no problems while being there. Take plenty of snacks and make sure he drinks alot of water. Have fun.

 

[BCV23]

So much good advice already. I would add if you will be flying, be sure to take all his supplies on board with you plus snacks and backup meals in case of delays.

It sounds as if you are probably counting exchanges right now instead of carbs. If that changes by the time of your trip, get a good carb count booklet. WDW is wonderful about trying to work with special dietary requests....low sugar, gluten free, etc but doesn't yet have a good handle on carb counts.

Good luck to all of you. It can seem overwhelming at first but it will become second nature before too long.

 

[RamseyTrio]

Thanks guys All that will certainly help us out!

I can't wait until our follow-up in 2 weeks to ask about a pump. I've heard lots of positive things about them. We are currently carb counting and that's been going pretty well. He's a fussy eater so I'm sure his meals will be pizza, nuggets and PB while we're there. Hates water (that's gotta change!) but loves diet ginger ale. He was a HUGE juice kid so that's his biggest switch so far.

Hadn't even thought about the sharps container in the hotel room - how is it travelling on a plane with the needles and such???

Thanks so much for all the advice already

 

[Sue & Co.]

I know that to travel from the UK to US with needles you need a doctors letter confirming the medical need to carry them on the plane (otherwise they have to go in hold) - I assume it is the same within the US. You also need a coolbox as the plane companies will not take responsibility for keeping insulin (or any other meds) cool.

Sue

 

[BCV23]

I believe the recommendation in the US is to have your supplies in the original prescription container. However my DH who also has diabetes flies weekly with his little insulin pack and has never had to show anything. I don't think you will have any problems.

Off topic, but can I ask you about your son's insulin? My DS2 was disgnosed at age 6 in 1988. For many years, he was on the regimen yours is on now....test 4 times, shot before breakfast and dinner. He also had to eat all three meals and 4 snacks per day each within a 15 minute window (we sometimes were off for dinner). He was on R and NPH in those days. We counted exchanges.

Now we count carbs and he is on lantus and humalog. Test 4 times, 4 shots.

Do you avoid carbs other than at breakfast or dinner following his shot? Or does he get just a very low carb lunch and snacks if any? Or is he on humalog and NPH?

I haven't been been completely happy with his new regime. It is certainly wonderful to not worry about night lows and to not be as tied to the clock but his control is not what I would like (his md either). He is not as active either and the change occured just as we changed his insulin. But that was also when he stopped going to school at 21 which then allowed me to give him his lunch shot. So I don't know if the change in his activity level is tied to the insulin or not.

I should probably add that he has Down Syndrome (hi, Sandie ). Otherwise you might wonder why I'm giving a 23 yo his shots!

 

[SueM in MN]

Hadn't even thought about the sharps container in the hotel room - how is it travelling on a plane with the needles and such???

Thanks so much for all the advice already

Here's a
link to the Transportation Security Administration page about travel for diabetics. It includes information about travel with supplies, including sharps.
(If the direct link doesn't work, go to www.tsa.gov and you should find a link for travel for Persons with Disabililities and Medical Conditions on the left side.)
Anyway, you want to bring all the suppliers and medications in your carryon luggage. You are allowed to carry on syringes, but you also have to have some injectable medication to go with the syringes. If you are (or will be) traveling with any used syringes, you need to bring a puncture resistant sharps container. (As was already mentioned, once you get to WDW, you can request one from Housekeeping at your resort).
The reason they won't allow you to store insulin in the airplane refrigerator is food safety regulations.

 

[RamseyTrio]

BCV23 - We're still in the "learning stage". We were at Yale New Haven Hospital and they told me that for the next 2 weeks (before we go for our follow-up) we should let him eat what he'd probably normally eat so they can adjust the insulin doses to accomodate his needs. They told us about the carb counting which we've been trying to follow faithfully. He has to eat immediately after his shots but they aren't all that strict with the lunch or snack times yet. He is currently on Novolog & Lente. I have to call daily to get the doses until they find the precise one that will work for him. My son is a HUGE carb fan...the way we're doing it is that he can have 3-4 carb units for each meal and 2 carb units per snack. So far it's going pretty well but I'll be curious to talk to the dietician at our follow-up.

 

[Selket]

Do you avoid carbs other than at breakfast or dinner following his shot? Or does he get just a very low carb lunch and snacks if any? Or is he on humalog and NPH?

Sounds like if your son is on lantus and a fast-acting (humalog or novolog) then you don't need to be tied to that regime you had on NPH and regular. He could eat a carby snack whenever and just give a shot to cover the carbs based on a ratio worked out with your doctor.

William was on humalog and NPH for many months but the NPH is a dreadful insulin (IMHO). Before going on the pump we switched him to lantus and humalog and that was much nicer. He did take up to 6 shots a day (1 lantus and 5 humalog) sometimes. If your son tolerates the shots well enough there is no reason he can't eat off schedule and have a shot for the carbs. The book Sweet Kids is really helpful. You might want to ask your dr. too about having your son (BCV23's son) wear a continuous glucose monitor if that is possible for him. Perhaps he is having highs or lows that aren't being caught? I'm not really sure what would bring down his activity level and control. Chatting with the folks at the CWD site could also give you some ideas to pursue with your doctor - many who chat there are very knowledgeable and have helped us with William a great deal.

Ramsey - we had a hard time finding sugar-free drinks in the parks that William liked (diet Coke is everywhere but little else). We were able to find the Minute Maid Light Lemonade sometimes but usually not in sit-down places. We usually brought in a small cooler with drinks for him. The Kool-aid Jammers 10 are great (that is sugar free Koolaid in a pouch - easy to carry). And also cans of the lemonade like I mentioned and the Diet Rite sugar free drinks are good - they have grape, peach, orange, etc. flavors kids like. I have found some "sugar-free" juice drinks at Target - I can't remember the brand name. They had a few carbs in them (maybe 6 or so in 8 ounces) but much lower carbs than regular juice. You might keep an eye out while shopping. It was an apple-cranberry flavor the ones I found.

 

[reeeoga]

just a Hug type thing from my family

Our daughter was diagnosed with type 1 in October. It took 3 months to get her levels correct. DON'T PANIC. Take your time and learn everything you can. You can do what it takes to keep your son healthy.

We are going to disney in November to celebrate 1 year of Healthy living for our Daughter.

Once your son is stable, go to the various web sights and find the menu's. This will help you find good places to eat. I have the menu's on my laptop so we can see where to go while sitting pool side

Best Wishes
Jeff

 

[TiggerCate]

Hugs. Diabetes is hard to go through! I had a long time boyfriend that was diabetic. He was diagnosed in the 70's as a small child and passed away a few years ago at the age of 29 (not diabetes related, but he did have some kidney damage by that time). I just have a little tip- when we were together, I never drank diet soda myself. That way, I was sensitive to the taste and if we had a question as to whether someone gave him the wrong drink, I could tell the difference! (When I regularly drink diet, I am less tuned in to the taste.) The other thing is to watch for depression. XBF had lifelong depression problems and after he died, I found out that diabetics have a higher rate of depression!

Good luck! The good news is that so much has changed for the better in how diabetes is managed and treated.

 

[BCV23]

Kim, thanks for the reply. You know I forgot but I bet your son is still in the honeymoon period, too. Or is it even called that these days? It wasn't that delineated for our son anyway.

Carol, thanks for your input. I'll have to check out that site. But I guess I wasn't clear enough. He is no longer tied to that strict regime although he still prefers to have his meals at the same time and it does seem to work better for him. But he doesn't need to have snacks at all now except sometimes at bedtime. If he wants a snack, we do give him an injection if the carb count is 15 or above....unless he wants the snack because he is low of course. If the count is under 15, no shot.

Hugs to your son and entire family, Kim!

Barb

 

[Selket]

Barb - sorry about that! Do check out that CWD site - especially the parents chat room there - some very helpful people regularly visit. And many of the parents now have grown children your son's age.

So far we've been lucky not to have any mix-ups between sugared and sugar-free drinks at restaurants. I have been told that you could use the ketone strips that also measure glucose levels and dip those into the soda to tell if it has sugar in it. I haven't tried that though!

 

[Talking Hands]

I have on occasion had my drinks mixed up and been given a sugared drink in error. Fortunately my husband is my taster and he is great at it. I used to use the glucose strips but haven't been able to find them lately.

 

[BCV23]

My son has on occasion been served coke instead of diet coke. Most servers are great about this at WDW and in the real world but.... We always taste it for him to make sure. Most will mark it with a straw already in it, a bar swizzle or even a lime slice which he views with disdain. Of course, it is sometimes the bartender's fault.

Diet coke is noticeably darker in color than coke if someone else at your table orders that.

BTW, Diet Coke gives our son a headache....Talking Hands and I have discussed this before. When I remember , I stick a couple of cans of his beloved Diet Rite in the backpack. I am also working on helping him to develop a taste for unsweetened ice tea. That is going well.

 

[knucklehead]

Sorry to hear about your sons diagnosis.

When we've traveled to WDW with our now 12 year old (diagnosed at 16 months), we've managed to lose his MedicAlert bracelet during one trip and his glucose monitor/glucagon/supply pack during two other separate trips. The wonderful Disney staff was able to get the pack back to us quickly both times because we put address labels on everything and they tracked us down since we stay on site. Since these occurances, we bring an extra bracelet and the extra meds pack that we keep with the nurse at his school, as well as extra adhesive address labels.

As for standing in lines or any other type of waiting, we've had great success avoiding "lows" for eleven years by carring with us several of those little single serving size bags of fruit snacks (Farleys, Brachs, Betty Crocker, Nabisco, etc.) that you can get by the box (8-10 per box) in the granola bar/pop tart/fruit roll up section at the supermarket. The kid likes 'em and they work pretty quick. "We don't leave home without 'em"!

I noticed that you are in Connecticut. Our son has gone to Camp Joslin in Charlton, Massachusetts for a couple of weeks during the past several summers, he looks forward to seeing his old buddies every year and meeting new friends. Although we do miss him while he is there, it has been absolutely wonderful for him, and we cannot recommend this experience enough for a young diabetic.

Best wishes to your son and your family at this tough transition time.

Sue