Please advise, son with Diabetes

[mamajoan]

Minniesfriend, HURRAY!! for you. You have a great attitude and a warm heart. God Bless!

Linda, That is a great idea!

Joan

 

[SueM in MN]

Depending on your school district and state, there may also be a nurse in the school that can help to smooth things over/educate staff, etc. I used to be a school nurse (in one of my former lives) and it was always nice to know about these things so I could help with planning.

 

[mykidsmom]

Hi Minnie's Friend,

I know it's been a year since this post but I had to reply. I just did a search for diabetes and read your post. It touched me so, because you sound just like me. My 5 year old son was just diagnosed 2 months ago and our life has changed in ways that we never would have imagined. He is doing very well but every day we meet a new challenge, physically or emotionally.

I'm curious how you're trip went. We are planning a trip in early August and are staying at OKW. I'm wondering if you have any tips, pointers, etc.

Thank you and God Bless

 

[LindaDVC]

I have had a trial glucowatch for a week and plan to order one tomorrow. It tells me my blood sugar level every ten minutes. I have mine set to alarm if it goes below 100 or over 200. I think this would be great for a parent to regularly allow them to know their child's blood sugar level.

Linda

 

[BCV23]

mykidsmom, I'm not minnie's friend but one of our sons developed type1 at six and we took him to WDW that year just as we had before and many times since. He is now 21 and we just switched from NPH and R to Lantus and Humalog. Our challenge with him is that he also has Down's Syndrome and his speech never really developed so he can't communicate with words about how he's feeling. He will tap on his med. bracelet sometimes to let us know he's feeling low.

My number 1 tip is always to have some food with you. Little juice cans and apples work well for us. Bananas are fast to eat but prone to squishing although my DH manages to carry one in his camera case for our son...I don't do so well if I try to carry one. Raisins and Extend bars are other good choices. Whatever he likes is the most important thing.

We always do PSs and since we've always been on a very tight time regimen that has worked well for us. We seldom have to wait long to be seated and having a set time makes it easier to not get delayed in having a meal as in "just one more ride." Restaurants are also great about bringing bread or juice if need be.

Lots of pixie dust as you go through these first few months. You sound like you have a very positive attitude. Have a fantastic WDW trip!

 

[coachv]

I have been a diabetic for 16 years now and have seen quiet a few good suggestions on this board. Here is something new though on keeping insulin cool. Check out the Frio wallet. I believe I have the name correct and the web address is www.friouk.com I believe. It will keep your insulin cool without the need of ice for several days at a time. I don't want to go into a lot of details but check out the website. I have heard good things about it. I have ordered one for my insulin pump to help keep the insulin cool in my pump. Hope this helps.

I goofed on the web address but it is now correct!!

 

[BCV23]

Thanks coachv. I googled for it and found friouk.com which also led to frio.us.com. Sounds pretty good. I've been wondering how to keep his new pens below 86. Our medicool pack that we've used all these years won't work. Anyone have experience with Frio?

 

[coachv]

I corrected the web address. I belong to insulin-pumpers.org and I have read several of their posts saying how much they enjoyed it. The only bad thing I have heard is if you order from the UK it can take a while to arrive but other than that, nothing bad.

 

[BCV23]

Thanks for the response as well as the info!

 

[minniesfriend]

Hi Mykidsmom,

Going ahead with our trip was the best thing we ever did. It showed our son that we could do whatever we used to do, but we just had to take it easy and plan better.

It was a great break through for the shots. We would test his sugar then go to the restroom to do the injections. We explained that we really needed him to cooperate and stand still. He seemed to understand and, bless his heart, would go into the restroom and calmly take the injections. We always did "hiney" ones when we were eating out that's why we did them in the bathroom. Now he is taking them in his arm and stomach so we don't necessarily have to excuse ourselves.

As far as tips - I will try to be as helpful as I can. Feel free to ask more questions. There is so much to say so I will try to keep it short.

1. Always carry a peanut better sandwich with you (Or another food of choice). If he doesn't like the meal, he'll at least eat that.

2. Do your best to stay on your schedule. This will make things so much easier and keep him healthy.

3. Make PSs or have another meal plan. If you make PS, tell the hostess that your son has diabetes and must eat on time. I also make my PS 15 min. earlier than what I needed.

4. Don't skip a snack. If it's snack time and he's high, consider a small snack like one or two peanut butter crackers or a glass of milk. The tendency for my son was to run high. When I skipped the snack altogether, he would drop at meal time. We were using Humalog and NPH at that time. We have since switched to lantus and Novolog.

6. Since you are staying at OKW, you will have a fridge. You can store your insulin here. Also, have his breakfast meal ready so that you are not rushed in the am to feed him.

7. Housekeeping will provide a sharps container if you ask.

8. Try to let him get as much rest as he needs.

9. Take all dr's phone numbers, extra insulin in case one breaks or you loose it and twice as many supplies.

10. As far as keeping the insulin cool while you're in the parks. We sometimes kept it in the first aid center but had to come up with plan B since there were a couple of times we forgot it and had to return to get it. Here is what works for us: I bought a lunch box from land's end. It is insulated. In the baby care center at Target, I bought an insulated medicine keeper (The First Years makes it). In the camping area, I bought three small rubbermaid freeze packs. One of these packs will easily fit into the medicine keeper while the others stay in the freezer waiting to be used. (The gel-pack that came with the medicine keeper leaked and doesn't stay cold as long). His monitor, snacks, juice for lo-BS and medicine pack all fit into this lunch box. The lunch box has sturdy sides, too, so that things don't get squashed. You can check out the lunch box on their website.

11. Take a book that has carb counts in it. I found a great one at Barnes and Nobles that is the size of a paper back. It is published by the American Diabetes Assoc and The American Dietetic Asso and entitled The Diabetes Carbohydrate and Fat Gram Guide, second ed.

12. I left you a pm with my personal e-mail. Please e-mail me if you have questions or would just like to talk. I was so heart broken and I remember all the advise I got and I appreciated it. But what I needed was a listener. And my son needed a friend with diabetes. Take care and good luck. You and your son are in our thoughts and prayers.

 

[tymike]

Ww went thru the exact same situation a few years ago when my son was diagnosed at 5. He was diagnosed and hospitalized about 5 wks before we were suppose to go to disney.

The doctors insisted that we go so that my son did not feel like it was his fault we didn't go to disney and so that he realized everything would be okay.

Follow all of the great suggestions above and focus on what is important (taking care of your son and making sure he has a good time). I am wound a little to tight anyway so the vacation for me was very stressfull, but it ended to be alot of fun and it was okay.

I will always remember the last night in disney sitting on the garbage can watching the parade in mk holding my son. He was focused on the parade and all i could do was realize how lucky i was that he was diagnosed when he was and how lucky i was to be there and see the parade thru his eyes. He watched the parade, i watched him and cried.

He is now 8, he just went on the insulin pump a few weeks ago
( things are starting to settle back down for us ), and we are going back to disney at the end of june. He was also recently diagnosed with celiac disease ( no gluten - which is in everything ). We are now working thru that !!

if you need anything or have any question i will private message you my e-mail address.

scott

 

[kidslovedisney]

I also feel for you and what you are going through. DD was diagnosed at age 4 on 6/18/01. We made our next trip to Disney in 11/01. She did fine.

With the injections, I don't remember seeing it on this post, but if it is, sorry for repeating.

I would HIGHLY suggest going to your pharmacy and see if they can order you a devise, called an "Injectease". I may be wrong on the spelling. They are about $25 and do not need a prescription. What it does, is it makes it much easier to do the injections. My DD does not even see the needle go in her leg or arm. We have 3 of them now! They are well worth it. We heard about it on this web site in 2001. My phamacy is CVS and they carry them, but if they don't, ask if they can order it for you.

Made a world of difference!

We will be arriving at WL this Saturday (6/7/03) and will be the first time with the Diabetes and the heat! Will have to see what happens.

Good luck!

 

[JOLAROCHE]

I am diabetic. Several things that I do when I travel to WDW is I take those small tubes of frosting the kind you can decorate with. I carry one in my fanny pack and one in a back pack. Also milk will work just as good as orange juice and sometimes cartons of milk are more available when traveling places. You will have to test more as I can almost eat anthing in Disney because of all the walking I do. You can request a fridge for your room. Are you flying. If you are you should have a note from your sons Dr so there is no problem getting on the plane with needles. I carry this note with me at all times. Another thin I like to carry is those ceral bars they do not melt. I hope you get to go. Good luck.

 

[jennyl772003]

Although my son does not have diabetes, he does get daily injections. He is 5. One of the things I found that help are:
Let him shout OW! when you do it. I know it sounds silly, but it helps.
Also, let him help as much as possible. Get supplies, pick injection location etc.
Bribery helps also.
Do you use a regular hypo? My son has an injection pen. I'm not sure if this is an option for you, but the needle is hidden and so my son cannot see it. It is easier for my to use also.
He now reminds me when it is time for his injection. It doesn't bother him at all. You'll be surprised how quickly they adjust. Good luck!

 

[dan-tot]

I wonder if he would put up with a wheelchair in the parks. My sister has to use a chair because she cannot walk long distances. She is also a type 1. My sisters situation is a little different she had spinal mengitis when she was 1 and she lost a portion of her brain to the disease. She has a tolerence to pain so she takes the needle ok but she hates the gm sticks. She has free style which is alot better than the finger stickand it requires only alittle blood smaple. She knows when a finger stick is coming so we have to say we need to do this so we can go to disney. She then does it. We have had no problems with sugar swings with her in the chairand the parks. She rides along and gets out when it is time to ride. Or she stays in the chair and rides the in the chair rides. Pirates you take along the chair with you. Its a small world you can ride in the chair. Spaceship earth you have a short walk to the loading area. Star tours is a ride up to the loading area. Disney has books on the different parks with people with disabilites(?) that you can get from them just call them up and they will mail them to you. We have been in the nurses station at MK the one near CP and it seems real nice ,it is cool and I want to say dark but it isn't totally. We were in there for the companion bathrooms which are all over the parks. The books show you the locations. They are in all nurses stations. Well good luck with your trip. I know you will still have a good time. Oh OJ is a good juice to use for low BS.


Dan-tot