Please advise, son with Diabetes

[minniesfriend]

Hi Friends,

Last week, our son was diagnosed with Type I Diabetes. He is 5 years old.

Probably like many diabetics, his current routine is three shots/day, am, dinner and bed. Three meals a day plus three snacks. Each meal/ snack must be during a certain hour every day as well as the injections.

He does great with the glucose tests, but requires restraining during shots.

We have a Disney vacation planned for the third week of July (AKL). It would be a great break....or would it?

For those with experience, DH and I would really appreciate your advice for the following questions.

Should we go?

What about the timing of the meals? I can bring snacks but what if I can't get a PS or the PS still requires a 20 minute wait?

Will the heat affect him along with the waiting and walking?

If we go, should we change our reservations so that I can cook?

What else do I need to know, or where else can I look?

Thanks for contributing. We just don't know if we should postpone. We hate to disappoint him and his sister but if it is in his best interest, we will do whatever we need to do.

Thanks again.

 

[SueM in MN]

Welcome to disABILITIES.
There are a lot of people with diabetes who post/read this board, so I'm sure you will get some good advice from them.
My piece of advice is that each park has a First Aid station that is staffed by helpful people, including RNs. You can store insulin there, go there for testing/shots in a nice, private environment.

 

[teri]

It sounds like you might want to have a space where you can relax, prepare some meals so you don't have to depend on PSs or counter service, have extra privacy for doing shots and testing, and hang out if he is overwhelmed. You *might* want to consider staying at one of the Home-Away-From-Home resorts rather than AKL, but the AKL will provide a refrigerator and sharps container for needle disposal, if you ask.

All the Disney sit-down restaurants will accomodate special diets on 24 hour notice.

Should you go? Yes, it sounds like you really need a vacation, and uless the doctor says otherwise, that is a good place to do it.

I hope that your vacation is restful, fun, and magical.

 

[Talking Hands]

One warning. Priority seating is just that. It is not a reservation and there can be a wait. Since you need to restrain your child to give the injection I would strongly advise against using sitdown restaurants. Just doesn't work. Fast food or cooking at your resort would be better. While I get priority seatings I can inject at my table quickly and discretely. That isn't an option for you yet. It will come.

The other suggestion would be to postpone the trip until your son is comfortable with injections and you are more comfortable with his schedule. Schedules aren't written in stone but when you are new it can be scary allowing any adjustment. Also with all the walking and excitement you will need to prepared to test more frequently and have ready snacks available at a moments notice. Castmembers are great in an emergencey but it is better not to have one. I have had a few hypos at the parks and the minute I say my blood sugar is going low castmembers have gotten me sugar but it still can be scary. And I can drop like a rock!

Taking injections at the first aid station and expecting to be seated and eating within the time for the insulin to start acting is iffy at best. DON'T DO IT! Crystal Palace in MK is best if you do a PS because you can be seated and quietly slip over to the First Aide Station, inject and then imediately head for teh buffet. None of the sit down restaurants are close enough to do this.

This is from 25 years of experience with diabetes and 27 years of Disney experiences.

BTW icing gel is a good fast suggar that keeps neatly in a purse or emergency kit. I prefer them over the glucotabs. Also a few juice boxes are great. I even keep one at my bedside for late night lows.

 

[Talking Hands]

Teri they may accommodate the diet but a diabetic really doesn't need special foods. What they don't always accommodate is the schedule. No sit down restaurant anywhere does.

 

[teri]

I have heard some nice things about their sugar-free desserts.

 

[Talking Hands]

Yep sugar-free chocolate covered strawberries are to die for. AKL concierge.

I can't have many of the sugar free desserts as they are sweetened with aspartame. That makes me sick as a dog. Better a piece of fruit.

 

[mamajoan]

Hi, Long time IDDM also here. I may be of a different thought here but ...
It sounds like you are doing a great job taking care of your son.
Different people need different lengths of time to become skilled at dealing with diabetes. Since your son is newly diagnosed I have a few ?'s.
1. Have you dealt with a hypoglycemic (insulin) reaction yet?
2. Do you know the signs and symptoms of high and low blood sugars?
3. Are you confident with adjusting his insulin amounts?
The reason I ask these ?'s is because traveling with a diabetic throws a curve into everyone plans. Those of us who are longtime diabetics easily travel with confidence.

Before you head out to WDW, I suggest you discuss the situation with the doc, review procedures, and equip yourself for any situation. Discuss insulin and time adjustments that may have to be made. Also ask if doc thinks your son may benefit from Glucagon injections, which are used if he has a severe insulin reaction which causes him to be unconscious.

As for being in WDW, yes the heat deals a huge toll on diabetics, most times it causes a drop in BS.
Keep your son well hydrated with WATER
Invest in a insulated pack, that can carry insulin and meds
Keep glucose tabs handy, they come in grape and orange, I find them easier to take with water.
In your day pack, keep juice, crackers with cheese or peanut butter, and a roll of lifesavers.

I agree with Talking Hands as far as trying to sched. meals and injections. It is often difficult at best. You did not say which type of insulin your son is taking. If it is regular or a combination of regular and NPH, more planning is a must. If it is the fast acting insulin, you have much more leeway of scheduling.

If your son cont's to have difficulty with the injections there are other means of giving insulin. Ask your doc or your diabetic educator for the options that would suit your sons needs.

Please also realize that a big trip like WDW will increase your sons activity level greatly, therefore most likely his need for insulin will decrease.
Good luck! Your son is a lucky kid to have a great mom looking out for his needs first.

Joan

 

[dizneyizlife]

I'm a mom with a son who has had IDDM since he was three and a half years old. His first trip to Disney was at the age of 5. I too would recommend taking all your supplies along with you to parks so you have what you need when you need it. There is a small "freezable" cooler available which can keep your insulin cold enough; this will save a long and possibly inconvenient trip back to the first-aid station when you want to eat. Most everyone finds a good Disney day to include a long rest back at the hotel from early afternoon to around dinner time -- I think you may find this to work well with your son, given the heat and level of activity required with just walking around. I would definitely carry juice boxes; they're great when you need a quick 15 carbs to raise a low blood sugar. My son hated shots too when he was that young -- I remember we were able to distract him somewhat from the unpleasantness through a toy we found that he would click 5 times, and when he was done the shot was over. The one thing you have in your favor is that at his age, you will be with him every minute of the trip. I hope you have a great time!

 

[Jordan's MOM]

minniesfriend,

I can't help with the diabetes but as a teacher that has worked with lots of 5year old I have a suggestion that might make getting the shots a little easier for your son. I have learned that having rules come from a doctor makes them more important to a child. Perhaps tell your son that the doctor says that "we" have to be good at giving and getting the shots before we take a big trip. (I am sure the Dr would agree and even relay the message to your son if need be.) Tell DS that we have two weeks to accomplish this. Ask for his help and remind him that the goal is to be good enough at this to get to go to Disney. Make sure it is in a positve tone as to never give him the impression that he can't go to Disney because of his diabetets or his understandable trouble adjusting to the shots. It worth a shot(LOL) and would at least make things a little less stressfull. You will know what is right for your son.

Jordan's mom

 

[minniesfriend]

Our experience with a low: just one so far. We went out for a morning walk/run. When we came in, he was 93. We knew to check him 20 min later and it was down to 58. His symptoms were fatigue, sweating, and aching legs all of which could've been from the exercise. These symptoms all occured around 93. At 58, he requested to go back to bed. We'd been taught how to handle his lows and it went smoothly. We just don't know what else to expect. This is still so new.

We adjust his insulin levels based on his BS at breakfast and dinner. In the am, he takes NPH and sliding Humalog. Dinner is sliding humalog and night is NPH. Is this what you mean by adjusting the levels?

We have been taught about Glucagon and have two kits. We haven't had to use it. I hope we never have to.......

We are going tomorrow for a follow up from the initial diagnosis and hospital stay. We will talk about the alternative methods for injection. It took us 45 minutes to give his shot tonight. My arms still hurt from restraining him. It's amazing how strong a 5 year old is. This is a whole new "parenting" ball game!

We appreciate the many good points about meals. We are going to look into a home-away resort as an option if we decide to go.

Thanks for all of the input and encouragement.

 

[mamajoan]

Minniesfriend, Sounds like you are doing great thus far. I know it is alot of information to get all at once. I forgot to ask if you are carb counting yet? It becomes second nature once you become accoustomed to counting carbs. Most kids learn it quickly.
The NPH is what will kick in at what seems inopportune times therefore causing the insulin reaction. In the next month or so you will be able to guage how long it is taking for the NPH insulin to kick in after first injecting it.
As for insulin reactions, different people have different symptoms.
Most common are sweating, to me it feels like a cold sweat.
Confusion, irritability, blurred vision, fatigue and sleepiness may also happen. At WDW you want to check his BS more often. Ask doc for additional test strip RX. Increased activity like swimming should be followed/preceded by a snack. The biggest thing I can tell you about insulin reactions is don't panic, give the tablets time to work. Some people, including myself, will panic overeat... in an effort to raise the BS. Glucose tablets have been a Godsend for me. Others do well with cake icing gel, or candy. Personally, having candy around is to much of a temptation for me.
Take a written list of medications with you. Don't forget Doc's phone number, son's chart number and insurance info. It will make things a bit easier .. just in case. Get the medical ID for your son. A generic IDDM is fine for now. You can also order ID's that are engraved with more information, such as emergency numbers and Doc info.
Sorry if I have repeated information you may already know.
Joan

 

[SueM in MN]

i knew you would get some great advice. Sounds like you are well informed and really doing well for such a short time after diagnosis.

I can give some advice on giving shots out of 12+ years as a public health nurse giving immunization shots. Distraction helps a lot. I didn't have anything I could give the kids, but my voice, so I often had the kids count to 10 as fast as they could. By that time, the shot was done and a lot of the most scared kids got to 10 and asked if I had given it yet because they hadn't felt it. A toy like dizneyizlife talked about would be a big help. I saw some little toys at Target in the toy department. They were really keychains, but neat little things he could do something with as he gets the shot.
It will get easier for both of you as time goes on. He is scared and you probably are too. There are lots of things to remember right now that will be second nature soon; that makes things take longer. I know it's much harder for me as a mom to do things on my own kids that I would have no trouble doing as a nurse to someone else's child - I can be objective when it's someone else's child. As a mom, I'm emotionally involved and I would have a lot of trouble giving my kids a shot the first few times even though I've done it thousands of times to others. As a nurse, I've worked with diabetics who took 45 minutes to talk them self into poking their skin - and they were adults. I've also seen 7 yr olds who came to my office when I worked in schools and did their own testing and shots like pros. Things will get better.

 

[aalan]

i am not an expert with kids, but i have been giving myself shots for 21 years. i just wanted to let you know that diabetes is manageable. it is, however, different for everybody. be sure to get the fine gauge needles, they are really small and sharp: you hardly feel them. after a while, you will be a pro at shots (as will your son). the new bg meters are also a godsend, they require so little blood that can be taken off of the forearm instead of a finger prick. i know it seems confusing now, but soon it will all be second nature. i think a disney trip would be a fine idea, just watch for lows due to all the activities...you sound like a wonderful parent, best of luck!

 

[tink2dw]

As a diabetic I can tell you that
1. Insulin injects with BUBBLES HURT!! After drawing up the insulin,hold the needle down and flick the tube a couple of times to get any bubbles to raise toward the plunger.

2. Shots hurt MUCH,MUCH more given in tense Muscles!!

Have the shot drawn and out of sight when you start this process.
Try sitting your child on your lap facing away from you,reach your left arm over across the front of his body and firmly grip his right hand near the wrist,pull his right arm across his body to your left. With your right hand reach in front of him and raise his left arm,Straight up in the air high. The arm in the air is the one that the shot will be given in. With the arm in the air he can't tense the arm above his elbow. IMPORTANT acompany all this to a story that you are softly,softly telling in his right ear. [Like a pirate caught Peter Pan by the arm this way and Peter had to raise his dagger like this to keep Wendy safe] Include in the story a reason why the shot giver is going to gently pinch the skin of his arm,and ,then have the shot giver come up behind you and on your childs left as far back as possable,as you add the shot giver into the story as the rescuer. then as the pinch happens and the shot is given Tell the most exciting part of the story,by then the shot will be given and Since you are going to WDW the stories could be about Peter Pan,and Hook has knicked your son's arm. Pooh and tigger and Rabbit might have to rescue Piglet and during the rescue your son arm is caught and Pooh must save him. Slowly finish the story,while calming your child. Then have a pleasant meal. Being calm yourself is a big key to success.

This is how I have to hold my Dd [16] who hates shots. But she has found this way of getting a shot practically painless.

Good Luck!!

 

[LindaDVC]

First enjoy the trip to WDW.

At first diabetes can be overwhelming -- I remember when I was diagnosed as a teen! As my dr says I am now 25years plus as a diabetic--
so quite a while ago. It becomes so routine it is second nature.

You have gotten lots of advice so I am only going to add that the biggest thing to do is check the blood level often. This will help make sure things go the best they can!

Since going on an insulin pump 6 years ago adjusting has been easier --I would never draw a syringe to add .5 a unit or even 2 units but with a pump I regularly make small adjustments. If you ever want info on pumps let me know.

On our most recent trip I got to Japan and they said we would need to wait 5-10 minutes. My blood was 40 and husband told them and they quickly got me a coke as we waited in the foyer! Disney will help if you need them!

Have a great trip and if you have other questions let us know!!

Linda

 

[Talking Hands]

Linda,
You are right about them acting quickly when told about someone having low blood sugar.
Twice it has happened to me. Once at Tomorrowland where my husband pushed to the front of the line and asked to buy orange juice quickly. It was handed to him and he was told not to worry about it.
The second time was in line at the Pin Event last August. I asked a castmember where was the closest place to get a coke because I was low. I was shaking badly. He told me to stay put and brought it to me. When I tried to pay him for it I was told to forget it.

 

[EUROPA]

Sorry to hear about your son. Maybe one day we will cure Diabetes. There are a lot of new treatments and products in testing right now. I'm a type I diabetic as well...for 12+ years. It really does become easier with time.

I would also like to recomend getting an Insulin pump. My life changed by leaps and bounds after going on the pump. It really is a wonderful thing.



Here is a link to another thread recently....it has a lot of great info. Good luck and let us know how everything goes or if you want any more inforamtion.

http://www.disboards.com/showthread.php?s=&threadid=222088

 

[minniesfriend]

Thank you everyone for your advice and encouragement. We are going to try to go and roll with the punches.

The shots are going better - we've discovered to keep the "sessions" short and loving. He's doing much better and there seems to be less trauma. We still have to restrain him but there is less resistance. Our doctor informed us we would need to wait until the honeymoon phase is over until we can go to the pump. We will definitely go that route when it is appropriate.

I am very fortunate to live in a time and country where I can get information with a click of a mouse and get such good advice from those who have been there-done that. I am finding the research and progress of understanding this disease is incredible. While I still hope and pray for a cure, I am thankful that with a close watch and a few shots a day, my son will live a normal, healthy life.

Thanks again!

 

[LindaDVC]

Since you son is 5 is he going to Kindergarten in the fall?

If yes you might want to call the school and exceptional child dept and let them know. The principal can match your child with an understanding teacher or one that might be diabetic or have a family member with it. They can also assign someone to check his blood sugar levels, etc.


Agian -- have a magical trip to WDW!

Linda