Friends for Life conf? my 2 yr old just diag w/ diabetes and ?

[Selket]

We took our 26 mo old son to the dr. last Weds and he was diagnosed with type 1 (juvenile) diabetes. Fortunately we caught it early and his only symptoms were drinking and urinating more. He came home from the hospital Fri. night and we are slowly learning how to keep the diabetes in control. We're still very sad but we're hoping for a good outcome. The learning curve is quite steep.

I was told about the childrenwithdiabetes.com website and I noticed there that they have a conference called Friends For Life every other year held at WDW at the CSR. It comes back there next summer 2005 and we were thinking of going to WDW this summer but perhaps we will postpone our trip and wait until next year so we can go to the conference which is for the kids and their families. I have a couple of questions:

1) Has anyone been to this conference? Any thoughts? Looking at the one being held this yr. in California it looks like a wonderful resource for the parents and for kids (especially as they get older). Should I make reservations at CSR now since it is held just after the 4th of July 2005?

2) Anyone try vacationing at WDW with a diabetic toddler or young child? Any special challenges or would you not recommend it? We also have a 6 yr old - both children would be older by then of course (3 yrs old and 7 yrs old). Will the babysitting services like Kids Nite Out watch diabetic children? (not that I can imagine leaving him at this point!!!!)

Some of you might remember that I asked about getting William a GAC back for our Aug. trip last year because he couldn't yet walk or stand at 20 months when we were there (for stroller as a wheelchair). We didn't use the GAC often but it was certainly welcome when we needed it. I certainly appreciate all the help I received here back then. Any info you want to send my way is appreciated!

Carol

 

[BCV23]

Carol, our son was diagnosed with type I, juvenile onset at age six in 1988. I haven't heard of that site or conference....thanks for the info! So I can't help with question #1.

My most important advice is to always keep food and juice with you as you tour the parks.

We left our three then young children at the Neverland Club once. I know our son had developed diabetes by then. He also has Down's Syndrome and our youngest has CP. I called ahead and they handled it all very well. We tested him and gave him his shot before leaving him. They give you a pager and we went over to V&A for a wonderful dinner (I don't think we had a pager way back then but rather just told them where we would be...but that was a long time ago
).

We also used a inroom sitter once but I think that was when we just had our two sons which also would have been pre-diabetes for us.

I would certainly go to WDW if I were you. Our endo. told us when our son was diagnosed that it was so important for our family to keep on doing everything that we had before...and he was so right.

Good luck with everything...it will all get so much easier in time.

 

[SueM in MN]

I have not heard of that organization either, but here's a link http://www.diabetes.org/for-parents-and-kids.jspto the American Diabetes Association, specifically the page about kids with diabetes.
They are a well known and respected, very old organization that has very good information about diabetes. They have very few links, but one of them (at the bottom of the ADA childrens' page) is for childrenwithdiabetes.com
, so I would say that it is probably a very good organization.

I don't have anything else to offer except to say that when I was a school nurse, there were a couple of kids in the schools I was responsible for who were diabetic. Even the 2nd grader knew nearly as much about diabetes as I did. Any kind of diagnosis for a chronic illness is a big shock, but you will soon learn what you need to know and I am sure that you will all feel more hopeful soon.

 

[Selket]

Thanks BCV and Sue. The diabetes educator said that the CWD site is the premiere site for kids with diabetes. Lots of good info at both of those sites!

I thought I might find some disney fans that also had attended this conference because they had a family member with diabetes but no luck so far. I'm sure the diabetes will be 'old hat' to us after awhile but right now it is overwhelming. We were told that we (and William) can continue to do any activity he wants pretty much - just more advance planning required.

Thanks for your help!

Carol

 

[gardendame]

I have 2 children with type 1 diabetes. The first was diagnosed 5 years ago at the age of 14-months. We were told by our CDE then about the website childrenwithdiabetes. It has been around for quite a while. In fact, if you are comfortable going into the 'parent' chatroom, log on and ask any and all questions you want, and you will get answers. I have learned much, much more from the other parents there than I have learned from the hospital. The people there are very welcoming to newly diagnosed parents and it is a very 'warm' environment.

We have not been to any of the conferences. We seriously considered it after the second child was diagnosed. However, it is quite expensive and there is no way we can afford it. We are going on our first EVER family vacation in October and we will be going to WDW. However, I booked our reservations over a year ago and have been sending a little money here and there when I could. It is the only way we could do it, especially after the money we spend on prescriptions every month. If I have the extra money some day, we may do the conference. However, as our vacation time seems to be rare, I am not so sure I want to spend it talking about Diabetes. Maybe.

 

[Selket]

I have been chatting over at the CWD website and it HAS been a wonderful resource! You are quite correct about that! I hope you have a fantastic vacation at WDW whether or not your make the conference. The conference looks fantastic and it isn't so expensive in and of itself but staying at CSR for those days would be certainly. I hope to arrive for the conference and do that and spend the following week touring the parks.

Have a wonderful trip!

Carol

 

[pixie dust gal!]

Selket, my heart goes out to you and your family. As a mother of a child with diabetes, I can recall those first weeks, months and year of accepting the diagnosis and dealing with it all. Not much time to adjust to anything - you are kind of thrown into it. That was 5 years ago and it has become part of our every day lives now. It still doesn't make it easier, I know. Just know there are many of us who understand - if you need to talk, feel free to PM me.

Also, thank you for the heads up! I had no idea about this conference and we would love to attend; it didn't say anything about cost for next year. We have been quite involved with JDA and my little guy has done several PSA's here in the US and Canada and yet, I have never been made aware of this!

Keep your head up and I will be thinking of you.

Deb