Anyone have Type 1 diabetes, or have a child with T1?

[akp]

My daughter, now 12, was diagnosed last summer. It was quite a shock but she's a very tough kid and has adjusted pretty well.

She gave injections daily for several months, then in November switched to an insulin pump.

We're about to head off on our first real trip since her diagnosis. (We've been to our home resort at Big Cedar, but that is so familiar that it is essentially a second home for us.)

We'll be flying next week to Costa Rica, so we'll be flying with the pump for the first time and be out of the country for the first time since her diagnosis.

I've got a long list of the the things we need to pack, and have looked on several blogs and webpages, but I wondered if any of my fellow TUG members have any insight as I trust the advice here far more than general web.

That said, I don't have any specific questions. I'm just curious if people have experiences to share, advice I may not have run across in my research, etc. Or maybe I'm just looking to calm my nerves a bit. I've always been an extremely relaxed traveler; to me, if I had a passport and a credit card, I never worried a bit about anything else. But things are different now...

Thanks for anything - advice, reassurance, whatever.

Anita

 

[shagnut]

I have a very good friend who's daughter is also age 12 and has juvenile diabeties. She has been to camp, and trips so she can probably really help you. I will pm you with her name and how to reach her. Shaggy

 

[glypnirsgirl]

Hi Anita - My daughter has Type 1. There are a few things that she does (she is now 28 so does this stuff herself) --- she has an emergency kit with regular syringes in case the pump breaks down. She now carries spare batteries for the pump in the same emergency kit. And lots of test strips.

When Laura first got diagnosed, she tested herself constantly (about 12 times a day). She is a fairly brittle diabetic and I think that constant testing was really important for her to be able to know her body better.

She learned that sugar lows are damaging to eyesight and sugar highs are damaging to everything.

It is important for your daughter to keep very well hydrated. Dehydration will result in concentrated sugar in her organs even if she is not testing high.

I found a book called "Conquering Diabetes" that was very helpful to me in understanding what Laura was going through. It is written by an endocronoligist.

I wish you and your daughter good control of this. It is a life-changer.

elaine

 

[beejaybee]

Grandsons

Our middle grandson was diagnosed 2 years ago 2 months after his 11th birthday. He was on injections for the first year and has been on a pod for awhile.

Our youngest grandson turned 11 on 2/19. My daughter was keeping a watch on him for symptoms and had suspicions he too might have type 1. On the 25th she become alarmed at his lethargy, tested him at home, and his #s were over 500. Luckily she got him into the endocrinologist immediately, and he didn't have to be hospitalized like his brother.

The times after initial diagnosis are the hardest because the pancreas has not yet fully shut down and levels fluctuate greatly so very close monitoring, even through the night, is needed.

No family hx of Type1. Oldest grandson who's 16 does not have diabetes. I do suspect a possible link in that the 2 who are diagnosed were jaundiced at birth and google indicated that there is some research into this possible connection.

Anyway, both boys are doing well. It's been harder on their mom I think. In fact the ABC affiliate in Charleston SC is filming a segment on DD & DGSs today to be aired this weekend there. Tomorrow is Charleston's JDRF walk.

My friend's DIL in her mid-30's was diagnosed with Type1 in May. Ironically, she'd been unsuccessfully trying to get pregnant for several years. Baby Lyla was conceived right around the time of diagnosis and arrived healthy & strong on 2/22 via C-section. Lyla's mom was closely monitored throughout pregnancy & delivery and is doing great.

 

[JPD]

Some months ago, I recieved a news letter about diabetic pumps and those airport scanners. The news letter stated that some pumps can be damaged from those scanners and give false readings. Contact the company that makes your pump and make an inquire about possible damage from scanners. The letter said the person with the pump should be wanded only, but hopefully customer service can give you the info you need.

Also Costa Rica is beautiful, you won't be disappointed.

 

[akp]

Our middle grandson was diagnosed 2 years ago 2 months after his 11th birthday. He was on injections for the first year and has been on a pod for awhile.

Our youngest grandson turned 11 on 2/19. My daughter was keeping a watch on him for symptoms and had suspicions he too might have type 1.

We're keeping a close eye on our younger daughter who is 9, also. I can't imagine having two!

Things have calmed down a lot. Back in late summer and fall, I was consumed with her care, even though she's extremely independent and did so many things on her own. (She gave her own injections from the beginning, and calculates most of her own carbs.)

She's signed up for a diabetes camp in Texas this summer which she's very excited about. She got happy tears in her eyes when she saw the first thing on the schedule every day was "Test BG" because she'll be with other people who will ALL have to do that. She's the only kid at our school (400 kids K-8) with Type 1.

We also have no family history of diabetes. It was a pretty bit shock! She was in very bad shape at first and was hospitalized for 3 days (missing the first day of school).

Thanks for the support.

Anita

 

[akp]

Some months ago, I recieved a news letter about diabetic pumps and those airport scanners. The news letter stated that some pumps can be damaged from those scanners and give false readings. Contact the company that makes your pump and make an inquire about possible damage from scanners. The letter said the person with the pump should be wanded only, but hopefully customer service can give you the info you need.

Also Costa Rica is beautiful, you won't be disappointed.

Thanks! We did get instructions on what to do at the airport scanner. I need to pull those out and read them thoroughly. What I recall is that they need to be hand-scanned and must not go through either the belt or the thing you walk through.

The company that makes her pump also supplies a back up pump for vacations which is a pretty cool service.

beejay, you said your grandson is on a pod; I assume that means he's on the Omni tubeless pump? Do you know if they like that? We were planning to get that for our daughter until we saw the size. It is an awesome invention but for a preteen / teen girl, the size makes it tricky. There is no good place to put it where you won't have a big lump under your clothes. Since the pump is actually IN the pod, there is a limit to how small they can make it.

Anita

 

[beejaybee]

Link to tv spot on my grandsons

http://www.abcnews4.com/video?clipId=8576257&topVideoCatNo=189728&autoStart=true

Hope that this works!!

Burke, our middle grandson, is away from mom & dad for the 1st time this weekend. He's spending the weekend at Furman College where the SC all-state middle school orchestra is rehearsing for today's concert. He plays oboe.

DD, SIL & Gus are reverting to days of Gus' infancy-having to wake up in the middle of the night for testing and adjustments.

 

[akp]

That was nice

Thanks for posting the link!

I can relate to how it feels like you have an infant again. It is a real challenge with an 11 year old, but I often think about this mom I heard about here in Kansas City who had 2 kids under 3 with Type 1. I cannot...even...imagine.

It's all still too new for us to get involved in the walks yet, but next year we'll participate.

Anita

 

[shagnut]

The girl I told you about is more than willing to help you. She is very active in the juvenile diabetes community . Since you don't want to do facebook with her if you will pm me your email I'll give it to her. Her daughter, age 12 , goes to camp every summer with kids just like her. Good luck, it's a tough disease. shaggy

 

[akp]

The girl I told you about is more than willing to help you. She is very active in the juvenile diabetes community . Since you don't want to do facebook with her if you will pm me your email I'll give it to her. Her daughter, age 12 , goes to camp every summer with kids just like her. Good luck, it's a tough disease. shaggy

Thanks, shaggy,

I did send her a friend request on facebook. (I signed up for facebook last summer to be involved in planning for my nephew's wedding, but I pretty much abandoned the account afterwards. It will be great for this kind of thing.

Thanks a lot for putting me in contact with her.

Anita

 

[JudyS]

Has anyone ever had trouble with TSA over the amount of medication they were carrying? I worry about how much insulin and other injectible liquids DH & I will have to carry if we ever do an extended trip. We are both Type 2, but we need a lot of injectible medicine. (We do watch our diet very carefully and have tried all sorts of exercise programs -- they are important for our health, but don't help enough that we can stop taking insulin.)

DH goes through 2 vials of insulin every three days. I don't take as high a volume of insulin, but I use a ton of needles -- I take three different injected drugs, for a total of 6 injections a day. I find it a problem to bring all the used needles home. On our last trip, we needed extra luggage screening and the TSA agent was a bit freaked out over having to search luggage that had lots of needles packed in it. (Luckily, that was on our outbound trip so the needles were all new and were sealed up and couldn't stick anyone. If it had been our return flight and the needles were used, it would have been more of a problem.)

http://www.abcnews4.com/video?clipId=8576257&topVideoCatNo=189728&autoStart=true

Great video! What cute kids, and an informative TV article, too.

DD, SIL & Gus are reverting to days of Gus' infancy-having to wake up in the middle of the night for testing and adjustments.

That sounds very difficult. I know that CGMs (continuous glucose monitors) can help with testing, but a lot of insurers won't cover them.

 

[shagnut]

Great Anita, I hope it works out for you, if you don't hear from her, please let know. Hugs, Glad I could hear.