Parents of Children with Type 1 Diabetes

Rapunzel

Mouseketeer
Joined
Feb 22, 2007
Figured I'd make a post (since I couldn't find one) to kind of congregate here and talk about our kiddos, tips, tricks, snack ideas; whatever seems to come to mind with Type 1. Even to vent if you need too. I know I've needed to vent a time or two!

My daughter Lauren was diagnosed on 7/8/2010 at the age of 5. I'll never forget the day.
 
don't have a child with Type 1, but I do have a husband (50) who was diagnosed at age 12.

I offer up my kids to all relevant research studies in the hopes that one day there will either be a cure.

If you have any other children or even you and your husband could take part in the research studies. They are always looking for close relatives to take part in the studies.
 
I subscribe to the JDRF research thingy. Nothing has come up yet that we would able to be a part of. :( I want my son tested, he's older than my daughter...but so far my insurance won't cover the testing.
 
A1C test kits and glucose monitors and strips are available over the counter. You can buy these and collect some data on your own. Wal-Mart and Walgreens both have a house brand disposable meter and strips that are pretty accurate.
 
Great idea for a thread! I have Type 1 ( diagnosed 31 years ago, at age 12), and my daughter has Type 1 (diagnosed 2 years ago, at age 12). I also have a 17 y/o son who is not diabetic.

Heading to WDW tomorrow for our second mother/daughter trip!
 
A1C test kits and glucose monitors and strips are available over the counter. You can buy these and collect some data on your own. Wal-Mart and Walgreens both have a house brand disposable meter and strips that are pretty accurate.

Oh I meant the genetic testing, I often check his BG at random times! He runs screaming from the room like a little girl - which doesn't even make sense because my little girl pokes her own fingers like nothing. :rotfl2:
 
Great idea for a thread! I have Type 1 ( diagnosed 31 years ago, at age 12), and my daughter has Type 1 (diagnosed 2 years ago, at age 12). I also have a 17 y/o son who is not diabetic.

Heading to WDW tomorrow for our second mother/daughter trip!

So jealous! I hope you have a wonderful trip!
 


https://www.diabetestrialnet.org/

Check out the studies on this site. I think you might be interested in having your son participate. They are specifcally looking for markers (autoantibodies) that precede the development of diabetes.

My kids participate in this study and take the blood test every year.
 
I am subscribing! I'm new to the type 1 - my 3 year old son was diagnosed after a scary experience with DKA last Thursday June 6th. We are going to Disneyland in October so I really hope to get some relevant info and tips, and hear experiences of park visits. I will have tons of questions for you experienced parents once we get the hang of managing diabetes at home (today was our first day home from the hospital). So glad to find this thread, in my favorite message board :goodvibes
 
I'm sure you are overwhelmed and probably in a state of shock but hang in there:). On June 28th it will be a year since my daughter was diagnosed. She was one week shy of her 8th birthday. There is no way to put into words how much my heart hurt for her and the challenges she will face. I can tell you that it does get easier. A veteran parent told me early on that it would get a lot easier but it would never be easy and she was right. Things just take more planning now. We had a successful visit to the Magic Kingdom in December and are going on a Disney cruise this summer. My daughter is a happy well adjusted 8 year who is just amazing in her outlook on life. She is my hero! Challenges will arise but with a lot of preparation, you can be ready for almost anything! We just take one day at a time. Praying for your family.
 
I am subscribing! I'm new to the type 1 - my 3 year old son was diagnosed after a scary experience with DKA last Thursday June 6th. We are going to Disneyland in October so I really hope to get some relevant info and tips, and hear experiences of park visits. I will have tons of questions for you experienced parents once we get the hang of managing diabetes at home (today was our first day home from the hospital). So glad to find this thread, in my favorite message board :goodvibes

It will get easier. It really will. I promise. There will be days where you want to lock yourself in the bathroom and cry, I still have them sometimes. Our kids are so resilient. Lauren was diagnosed at age 5, her 3 year D-versary will be on 7/8/2013. It's a life style change, I was told when we were in the ICU that we as parents will end up knowing more about diabetes than our own endocrinologist. You'll start to figure out your childs ques with highs and lows, I know when L is going low because of her behavior, I can tell when she's high because her breath reeks of the fruity rubbing alcohol smell.

You'll have times where you look back and laugh. One story I have is this: We were in sams club on a busy Saturday afternoon, the place was PACKED. My son picked up a 5lb cheese block and said "we should get this" Lauren sitting in the giant cart exclaims VERY loudly "OH MOMMY! I LOVE THIS CHEESE WHEN I'M HIGH!" Now, I know what she meant, SHE knew what she meant, but the bazillion other people around me thought my 7 year old daughter smokes drugs! I was mortified then, but I can laugh about it now. Or the one time I accidentally bolused her totally incorrectly a few months after she was diagnosed for S'mores. I ended up having to feed her 2 extra chocolate bars....she was happy LOL

Don't let diabetes define him. Get involved in the diabetes community. JDRF does fun stuff for kids. How is he doing?!
 
I'm sure you are overwhelmed and probably in a state of shock but hang in there:). On June 28th it will be a year since my daughter was diagnosed. She was one week shy of her 8th birthday. There is no way to put into words how much my heart hurt for her and the challenges she will face. I can tell you that it does get easier. A veteran parent told me early on that it would get a lot easier but it would never be easy and she was right. Things just take more planning now. We had a successful visit to the Magic Kingdom in December and are going on a Disney cruise this summer. My daughter is a happy well adjusted 8 year who is just amazing in her outlook on life. She is my hero! Challenges will arise but with a lot of preparation, you can be ready for almost anything! We just take one day at a time. Praying for your family.

Thank you for your insight :) I had some knowledge of diabetes because I am majoring in the field of nutrition and as soon as the paramedic mentioned his blood sugar was off the charts, it was like this giant lightbulb went off and it sort of washed over me that I know from textbooks what could potentially be coming, which is the only reason I did not totally have a meltdown and freak out when he was in the ER. I have an older son with challenges of his own, who was diagnosed with ADHD earlier this year, so I have some practice in making lifestyle altering changes suddenly. I truly feel for families who have no prior knowledge what type 1 is like because it was overwhelming the first week or two for us, and we were sort of prepared (my husband's grandfather also was type 1 so he had been around it growing up).

It will get easier. It really will. I promise. There will be days where you want to lock yourself in the bathroom and cry, I still have them sometimes. Our kids are so resilient. Lauren was diagnosed at age 5, her 3 year D-versary will be on 7/8/2013. It's a life style change, I was told when we were in the ICU that we as parents will end up knowing more about diabetes than our own endocrinologist. You'll start to figure out your childs ques with highs and lows, I know when L is going low because of her behavior, I can tell when she's high because her breath reeks of the fruity rubbing alcohol smell.

You'll have times where you look back and laugh. One story I have is this: We were in sams club on a busy Saturday afternoon, the place was PACKED. My son picked up a 5lb cheese block and said "we should get this" Lauren sitting in the giant cart exclaims VERY loudly "OH MOMMY! I LOVE THIS CHEESE WHEN I'M HIGH!" Now, I know what she meant, SHE knew what she meant, but the bazillion other people around me thought my 7 year old daughter smokes drugs! I was mortified then, but I can laugh about it now. Or the one time I accidentally bolused her totally incorrectly a few months after she was diagnosed for S'mores. I ended up having to feed her 2 extra chocolate bars....she was happy LOL

Don't let diabetes define him. Get involved in the diabetes community. JDRF does fun stuff for kids. How is he doing?!

Your daughter's d-versary is my husband's birthday, how interesting! Yep, I have seen how resilient kids really are - my oldest is seven and has had surgery 4 times and he bounced back from them so easily - especially the abdominal surgery that would have adults in bed for days he was out running around 48 hours later. It was kind of crazy how Charlie (my 3 year old newly diabetic) went from a lethargic boy with ketoacidosis and respiratory distress the day he was diagnosed to his normal self 2 days later, once his iv insulin wasn't needed anymore. And yep, in my first week home I confused what he ate with his older brother's lunch and over dosed his insulin and ended up feeding him chocolate as well...which he was perfectly ok with.:laughing:

Charlie is a super stubborn and strong willed little dude, but he is dealing with everything so well, he likes to actively participate in blood sugar checks and his injections, and I am so incredibly thankful he has an okay time with the adjustment. He has been doing great since we have been home, and in week 3 I am seeing less fluctuation with his blood sugar level which is cool. Our first trip away from home last monday he was so high the meter gave an error message, apparently too many carbs for breakfast and rounding down on the insulin dose was not so great at that particular moment :confused3

One thing I was very disappointed to learn was that DLR doesn't provide nutritional information, which I understand legally they do not have to, but I was surprised because in other areas they are so incredibly awesome with the customer service. I got the most generic email response ever, so now I'm left to wonder if I just have to lug around the calorie king book and some kind of travel scale to figure everything out. I'm a super planner when it comes to disney trips and part of our enjoyment is eating on site so I guess I am going to have to scour the boards for others' experiences. Good thing I have almost 4 months to figure it out :thumbsup2
 
Just subscribed, and now I am going to vent. I have 4 children. DD12 dx'd 0ct. 17 2010, DD10 dx'd Nov. 26 2009, DD7, and DS4. We are going to Disneyland in September (yay!) first disney trip since the big D entered our household. I actually posted about some of this in a general thread, and I should have known better. People who do not have T1 in their daily lives dont get it. So here is my dilema:
My girls are extremely able. They are healthy, active, and beautiful (I am a biased proud mama, but it is true), they swim year round competitively, and dance ballet year round, and they are good (still a proud mama), so people look at them and see very fit active girls, they dont see the D (still a good thing). So we were planning on skipping the GAC for our trip, because I know people will look at my girls and not get it. I just figured if we experienced a low in line or a show etc., that I would be able to slip out of line and grab something for them and hop back in. I guess I was wrong. On the general Disney post people were very adamant that this is line cutting (huh?), and that they would not let me back through unless I explained to them why. First off, my girls are tweens, they dont like anything that makes them different so that would completely embarrass them, and if they are low and hear me doing this, it is liable to turn into a fit, second, it isn't my disease, its theirs to share if they want, and third, its no one else s business!!! Everyone (okay, so actually just an ignorant few) went on and on how i should just be responsible and make sure i have something to treat a low at all times. At this point I gave up. How do explain to someone, that if I WAG wrong for both girls we can be in serious trouble, neither of them are making any of their own insulin anymore, and they are both growing, so they are both on rather hefty doses of insulin. That combined with heat, exhaustion, activity, we could have serious swings. We could be talking needing hundreds of carbs between the 2 of them at the same time. Of course I will take emergency stuff with me, but sometimes this disease is really a pain and wants to be difficult.
SOOOO that is my vent. Still not sure what we will do. With all the GAC abuse in the news the average guest seems to be behaving as their own investigative reporters, judging everyone they see with a GAC card. But on the flip side, if we have an emergency in line, and people are interfering we could have an ER trip on our hands. Thanks for listening. D mommas are the best, and often the only ones who really get it!:hug:
 
TOTALLY get it! Honestly I'd go for the GAC. We used one in WDW at the beginning of July and I honestly didn't give a hoot what people thought of us. My DD is VERY able, 8yr old who is about to start competing in gymnastics. It's also in a closed environment, away from sun, heat and within a closed group of people who know what to do if she goes low.

Throw in Disney with less sleep, no for sure accurate carb counts, walking, excitement, hurry up and waiting...it can be a mess. Now I totally understand we all want our D kids to be "normal" and D-free. And we try to treat them as such and go on with every day life as "normally" as possible, so whats the hurt in using a GAC for a few days while on vacation? They are there for people like OUR KIDS who need them, we shouldn't feel guilty for using them as they're intended because other people lack morals and common-sense.
 
Thanks! Like I said, D mommas are the best. I think we are going to get the GAC just in case, and then go from there. If we dont need it, great, but if we do, then we have it! Just want my girls to feel as normal as possible, especially at Disneyland!
On another note.... SOOOO excited that we go in just over a month!pixiedust:
 
Thanks! Like I said, D mommas are the best. I think we are going to get the GAC just in case, and then go from there. If we dont need it, great, but if we do, then we have it! Just want my girls to feel as normal as possible, especially at Disneyland!
On another note.... SOOOO excited that we go in just over a month!pixiedust:

They should feel like princesses at Disney! princess: Have an awesome trip! I haven't been to DL in oh jeez like 15 years!
 
They should feel like princesses at Disney! princess: Have an awesome trip! I haven't been to DL in oh jeez like 15 years!

This will be my kids first Disneyland trip, we have been to WDW several times. My hubby and I havent been to DL since our honeymoon 14 years ago. Expecting it to be a whole new experience for all of us!
 
Thanks! Like I said, D mommas are the best. I think we are going to get the GAC just in case, and then go from there. If we dont need it, great, but if we do, then we have it! Just want my girls to feel as normal as possible, especially at Disneyland!
On another note.... SOOOO excited that we go in just over a month!pixiedust:

I'm not sure if you went already or will be soon (either way - yay!) but I hope you will let us know how things went. We go on our first DL trip since the type 1 diagnosis (and an ASD diagnosis for my oldest son but that is for a whole other thread!) in over a month so I am feeling both extremely excited and a little bit nervous! I wonder how the GAC worked for you. I am thinking of asking for one to use my 3 y/o's stroller as a wheelchair because we have learned he gets tired easier and it is rough to carry a 40 pounder around, let alone while waiting in potentially long lines! I am not sure how hot and sunny it will be at the later part of October but I am still weighing looking into what a GAC can do to keep him from dropping too low in hot, sunny lines - I just don't want to take chances, even if our wait ends up longer. I'm going to have his JDRF backpack filled with snacks and drinks just in case too.

In a side note to anyone/everyone: do you guys prefer to check insulin at the First Aid station to keep in their fridge or use a Frio case to keep it cool and carry with you? Or another 3rd option? We are syringe/vial users and I'm so torn what to do since I see frio costs 30 bucks at our pharmacy, if it is very useful I would be willing to spend that, but we don't know how often we'd use it after we go to DL. Thanks :)
 
October was really hot a couple of years ago. :/ no way you need to carry. Have a great trip.
 

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