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

[Selket]

I posted this over on the disAbilities board and thought I'd also post over here in case some folks don't check that board. Here is what I posted over there. Any info appreciated!

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!!!!)

Many thanks,
Carol

 

[annemariec]

I don't have any information.

I just wanted to say I'm sorry to hear of your son's diagnosis. He's so young! Poor baby. He is fortunate you caught it early.
If I come across any information, I'll pass it on.

Take care,
Annemarie

Edited to add- I found this website for the Orlando event (2003)

http://www.childrenwithdiabetes.com/activities/orlando2003/social.htm

 

[Selket]

Thanks Annemarie! That conference looks great! Good info for the parents and fun for the kids - my little one won't get as much benefit yet but I think it would help my older son (6 now) to learn more about diabetes and see other kids with it.

Carol

 

[annemariec]

You're welcome, Carol. I'm glad it helped. I hope someone with first hand experience can give you some more input.

I'm sure your doctor has lined you up to talk to a dietitian. It sounds like he will be controlled by diet. That would be the best case scenario. Does he have to take any meds?

A good dietitian will be a wonderful resource. It will make a big difference in knowing what to look for in reading labels and keeping track of things.

I do know a little about diabetes. Just not any experience with conferences and someone diagnosed so very young.

Annemarie

 

[Selket]

Unfortunately he has type 1 diabetes which needs to be controlled by taking insulin (with shots right now) and sticking his finger several times a day to check his glucose level. It is a quite complicated disease we're learning - much more complicated than type 2 (usually adult onset type of diabetes). But hopefully he will do well with it.

Thanks again!
Carol

 

[knucklehead]

Carol,

Sorry to hear about your son's diagnosis. Our now 11 year old son was diagnosed at 16 months old. Our biggest concern then and now is to be sure that he has the best medical care available. Luckily we are located close to a major city and he has been followed at Children's Hospital of Philadelphia since being diagnosed. Not many children are diagnosed as young as our boys have been. Your local Juvenile Diabetes Foundation may be able to support you by hooking you up with another family that had a child diagnosed very young. Our JDF also has a group called "Diabuddies" which is a support group for the kids that sponsors events and gatherings. It helps the kids to be around other diabetic kids so they don't feel so "different." Our son also has gone to a diabetic camp for the past three summers. What a boost for morale that has been. Something to consider in the future. I would also be glad to speak to you further regarding our experience of dealing with a very young diabetic child.

Your information about the Friends for Life Conference at WDW is news to us! Thanks, we will certainly look into that for us.

We did not take our son to WDW until he was 4-1/2 years old. We have never used the sitting services at WDW, so we cannot offer any info on that subject. Again, I would be happy to talk to you about our experiences with our son at WDW and how we handled his issues.

Please feel free to email me. Best wishes to your son and your family at this tough transition time.

Sue

 

[RNMOM]

Sorry to hear of your son's diagnosis. I have every confidence you and your family will make the adjustment necessary to handle this very well. I think in a few months you will feel able to take him anywhere you wish.

As far as the sitting services at WDW. I would suggest you call them and ask. It might just happen that one of the child care facilities has personell able to handle this. Or, perhaps you could use the diabetes network to find a sitter/caregiver in Orlando to come to the room so you can have a night out. There are several babysitting services available in the area and even homecare/daycare facilities might have people they can refer you to.

Best of luck and remember, if in doubt, call your doctor or nurse on call. No question is too little to be answered 24/7.

 

[Selket]

Thanks for the input everyone - much appreciated. I thought there might be some DISer's that were diabetic/had diabetic family who went to this conference since it is at WDW!

Sue - check out http://www.childrenwithdiabetes.com and the info is there. There is info there on last year's conference at the CSR too. I think this would be like HEAVEN for your son (older kids than my 2 yr old!) with all the other diabetic kids since it is for families rather than doctors to come and learn. Perhaps we will see you down there next year! The CWD has a great website and the folks in the chat room there have been very helpful to me so far. I have contacted the local JDF folks and they're sending us a bear and some other stuff. We live near Washington, DC so our healthcare options are numerous like yours. Right now we're staying with Kaiser HMO but we could switch in January if we want.

Take care!
Carol

 

[annemariec]

Hi Carol,

I wasn't thinking. I know alittle of the adult onset and my mind was stuck in that mode. (regarding meds)

Anyway, I'm sorry to hear of the finger sticks and insulin. Have you heard of the relatively new sticking device that takes a sample from the forearm? I've only seen it advertised on TV. It's advertised not to hurt as much. Would't it be nice if it were true?

It is a lot to learn, but I'm sure you and your family will do fine.

Take care,
Annemarie

 

[mamajoan]

Type I Diabetes- Insulin Dependent Diabetic
Type II Diabetes- Non Insulin Dependent Diabetic

Hi, Type I here. God Bless you and your son! I think you will be able to handle all the changes this new lifestyle will throw you. You are out there getting information and that is VERY important.
I am hoping that very soon there will be a system that will not include finger pricks to monitor bs. That would be fabulous.
The thing I noticed that seemed to help the little guys with finger pricks the most was... make it a simple, quiet routine. I know that sounds impossible with ANY 2 year old. It seemed to work for several families I know. Quick, quiet and routine. That is hard to work into a 2 year olds life style..

Check with the diabetic educator thru Kaiser. She should be able to give you tons of info on different insulin delivery devices and glucose monitors etc. She will also be able to help connect you with a Diabetic support system available in your area. I think Camp for Diabetic kids is terrific for all those involved. It helps bring on a sense of independence and acceptance.

Best wishes!
Joan

 

[Selket]

Thanks for the info Joan. I realize the conference idea isn't exactly our first priority but it looked like a great idea for the future and perhaps next year we'll be ready for the info and can understand it. That it takes place at WDW is a little carrot to go with this big stick we just got hit with

Actually William is offering his finger out willingly for the glucose check and doesn't cry for that at all. He even wants to chose the finger. Last night he tried to check himself with an unloaded lancet - LOL! Pretty brave considering he knows what those things do! He still hates the shots though and it takes 2 of us to do those still.

Many thanks,

Carol