Juvenile Diabetes

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kirsteng's picture
Joined: 10/19/02
Posts: 644
Juvenile Diabetes

Hi friends,

Not sure how many of you are on here anymore - I see a lot of you on Facebook but I didn't want to post this on such a public forum.

We received the sad news today that Grady has Type 1 Diabetes. Sad :( Sad We had noticed over the past 6 weeks or so that he had been VERY thirsty all of a sudden. He would ask for a glass of (anything), down it, then immediately ask for more. He would drink 3 glasses of water before breakfast ... it was strange. He'd started wetting his bed at night again too. But halfway through that 6 week period, he got the stomach flu, and (I guess because he wasn't eating or drinking much due to feeling sick) the excess drinking and peeing stopped for 10 days or so. But about 2 weeks ago, it started up again. We had been tossing around the whole question of juvenile diabetes almost from the start, and even asked our pediatrician about it when we saw him for something different a month ago. But at the time, he just wanted to know if he was losing weight, and at the time, we didn't think he was. So he said not to worry about it.

But today we went to a family Christmas party, and while there I mentioned to one of DH's aunts that I was a little concerned with all Grady's drinking and peeing. She replied that DH's grandmother who had a sister who had 7 out of her 11 children with type 1 diabetes (and it has a genetic component.. this was the first we'd heard of a family connection!). So we stopped at a walkin clinic on our way home, and they (with a lot of cajoling) agreed to prick Grady's finger and test his blood. His blood sugar was 33 (supposed to be between 4 and 7). They sent us to the children's hospital immediately.

He weighed 38 pounds today, and I posted on his third birthday that he weighed 39.

So after a big workup, they think that he does indeed have juvenile diabetes. Because we caught it relatively early in the disease process, his electrolytes were still good and he was relatively healthy, other than the high blood sugar. So they let us take him home, rather than admitting him - which would be the usual course of events (I think they also try to be flexible so the kids can be home for Christmas if at all possible). He got a small dose of insulin and a dinner in the hospital, and we have to go back first thing in the morning before he eats or drinks anything to get a new blood sugar level and a new dose of insulin. Not sure what the plan will be for Christmas day and boxing day.. maybe the same thing.

After that we will be enrolled in their education program to learn how to live with/deal with this disease. They say it's quite a learning curve and quite a change. I'm beyond sad... although I do realize that nowadays juvenile diabetes is not necessarily life limiting. It will most certainly be a loss of spontaneity though, and a need for constant vigilance that I think will be difficult for all of us. Sad

Not sure what to do with all the little treats I've already bought for the kids' stockings.. I can't exactly give the older 2 chocolates and give Grady none... Sad

mom2robbie's picture
Joined: 01/20/07
Posts: 2541

:lurk:

Kirsten, sorry you are dealing with this. I have stuff posted on the diabetes boards that may help you. The boards are quiet. Grady can have the treats but you have to watch his total carbs, that is what affects the sugar levels. If you have questions just PM me.

hugs.

kjames106's picture
Joined: 09/16/06
Posts: 678

Wow, Kristen. Sorry to hear this. That has to be really hard. Hopefully the class will give you more insight and maybe even settle some of your fears/concerns. Does Grady understand? Does he have to have shots everyday?

rachelperry1983's picture
Joined: 04/13/07
Posts: 809

Oh honey, I am so sorry to hear Grady and your family are going thru this. I had something similar happen to my family recently, only it was my little sister 19yrs old. She lives in California now, but about 1.5yrs she weighed about 175lbs......when she came in this past summer she had dropped over 50lbs in about 6months and she hadn't changed her diet. Infact, she ate like crap. Could sit down and eat a whole box of cake rolls in one sitting and still lost weight. She's in nursing school and was in clinicals one day when they were cking blood sugars. Her professior kept cking her's and when she finally asked why he said bc your blood sugar is 584! She finally got around to going to the dr (bc you know how hard headed 19yr olds are) and when they tested her there her blood sugar was 786, she's lucky very lucky that nothing happened to her within those months she didn't know about it. She now watches her diet and is insulin dependent, but she said since she's gotten her blood sugar under control she feels 100% better.....she use to be extremely tired and now she has energry. I am so sorry Grady has to live with his diaease, I know with myself having asthma it hasn't always been the best. But good news is there are ways to help it. I am soooooo glad that clinic decided to ck his sugar for you. Please keep us posted on how he is hun. (((HUGS)))

zoe08's picture
Joined: 09/09/08
Posts: 665

I am so, so sorry to hear this! 3 is really young to find out. Honestly, the reason we banked Mason's cord blood is because my DH's father had juvenile diabetes and so does my aunt (mom's sister). So it runs in our family, and is a fear of mine, especially because they say it tends to skip a generation. I know that they can live a pretty normal life, but I feel so bad for him, and know that it will be hard on the whole family for all the changes that will come.

fudd8963's picture
Joined: 12/27/07
Posts: 1630

HUGE HUGS to you all. I am so sorry that he has this disease. I'm glad you and DH pushed the walk in to prick his finger. Please keep us posted on how he is doing and if you just need to vent, we are here for you. HUGS again.

boilermaker's picture
Joined: 08/21/02
Posts: 1984

Oh, Kirsten! I'm so sorry to learn of this. Poor you and poor Grady. What an attentive set of parents little G has to have noticed so early. Good work, mama!

Type 1 runs in my family, too. My paternal grandfather had it, and I have a few cousins with it and a cousin's child who has it, too. It is a definite bummer, but totally manageable and the quality of life is great.

KUP on how they proceed.....I know Grady will get great care.

boilermaker's picture
Joined: 08/21/02
Posts: 1984

Oh, Kirsten! I'm so sorry to learn of this. Poor you and poor Grady. What an attentive set of parents little G has to have noticed so early. Good work, mama!

Type 1 runs in my family, too. My paternal grandfather had it, and I have a few cousins with it and a cousin's child who has it, too. It is a definite bummer, but totally manageable and the quality of life is great.

KUP on how they proceed.....I know Grady will get great care.

kirsteng's picture
Joined: 10/19/02
Posts: 644

Thanks for all your kind words and support, friends. It really means a lot. :bighug: I'm really shocked at how many of you have family members with it too - I really thought it was quite rare before all of this! The good news is that one of the doctors told us that he was convinced that by the time Grady was 25 or 30, that they'd have a cure for this disease through the research they're doing with stem cells.. fingers crossed!

We're quickly getting ourselves acquainted with our new normal, and so far it really hasn't been difficult! We were lucky enough to have a nursing agency pick up our file on Christmas Eve day, which meant that we didn't have to go to the hospital twice a day through the holidays - a nurse comes to our home twice a day to oversee Grady's medication... we feel VERY lucky about that. As far as the injections go, yes Grady does need insulin twice a day, before breakfast and before dinner. Both Richard and I have now tested his blood (just a pinprick to the finger, superfine needle so not traumatic at all), called in to the diabetes on-call dr at the hospital to give his stats and get his updated insulin requirements, drawn up the insulin into the syringe and injected it in Grady's arm. Not at all hard - thankfully Grady is such a happy and easy going guy, he's never shed a SINGLE tear for any of the needles he's had since this whole thing started - including having an IV inserted in his hand that first day at the hospital. Every time he gets a shot, he just grins afterward and says 'that didn't even HURT!!". Wink So that's a real blessing - I can't imagine having to deal with screaming, running away, fighting to get those shots in. And luckily neither Richard nor I are squeamish about needles or blood, so that side is easy too.

As far as the food goes, it's really not anywhere near as restrictive as I'd imagined. Really the only big change is that Grady can't be quite as independent with his food as he used to be. He used to always go to the fruit bowl and help himself to a fruit, peel it himself and eat it when he wanted. He also used to help himself to yogurt often. He can still have those things now, but only at specific meal or snack times. Between meals and snacks, he can only have 'free foods', which are essentially very low carb things like cheese or nuts. Not usually what he's craving at the time, so that's a little hard for him to understand. But by and large, it's been pretty easy - maybe because he's so young and already had a pretty healthy diet, so it hasn't been much of a change, other than the timing... that he HAS to eat at 8, 10, noon, 3, 6 and a bedtime snack. We were nowhere near that regimented before! Wink

He does know that something is wrong, he has accepted that he can't have his breakfast or dinner until he has his needle... he volunteers to people that he's a 'little bit sick' while pointing to his tummy. Break your heart cute! Wink He has a HUGE appetite these days, maybe trying to get back a little of the pudginess that he's lost in the last few weeks. But generally he's happy, happy-go-lucky and looks incredibly healthy.. you'd never guess by looking at him that anything is wrong!

Anyhow, thanks again for being there, friends. It helps to know that others have family members with it that are leading healthy/normal lives. I know that Grady is probably the ideal child of ours to have this diagnosis.. while the others are jump-before-you-think types and skirt-the-rules types, Grady wants to do things the right way and is always quick to point out if someone is making a mistake. Just this morning after I'd poked his finger for his blood sugar test, the minute I'd poked he said 'you forgot to use the wet wipe first!', and I had. (Oops). So I think he will strive to adhere to both his diet and his medication schedule as he gets older and understands more... another blessing.

jnjebrown's picture
Joined: 09/16/08
Posts: 229

Glad things are working out!! I had babysat for a little boy who was 2 and had it. although it was a challenge sometimes once you get the hang of it it will be easy! There was also a boy on my older sons football team who had type 1 and at practice and games he would check his blood and go back to playing! Smile

I am sure by the time he reaches school age he and you will be comfortable and he will be giving him his shots! and that it is awesome that hopefully they will have a cure for it!!

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I think you need a break my friend!!!
The basement reno is the easy stuff!

fudd8963's picture
Joined: 12/27/07
Posts: 1630

Thanks for the update! I'm so glad that he is handeling it all so well. And it sounds like you have an awesome attitude towards it as well, which will really help him out! Is is lucky to have such awesome parents. Keep up the good work and keep us updated too!

How long do you have to report his blood levels to the doctor and get his insulin dose? Will you eventually be able to do it yourself?

kirsteng's picture
Joined: 10/19/02
Posts: 644

"fudd8963" wrote:

Thanks for the update! I'm so glad that he is handeling it all so well. And it sounds like you have an awesome attitude towards it as well, which will really help him out! Is is lucky to have such awesome parents. Keep up the good work and keep us updated too!

How long do you have to report his blood levels to the doctor and get his insulin dose? Will you eventually be able to do it yourself?

I think just a few more days Tara. We're going in today for our third visit/info session. There's one more after this. We have to learn about counting/estimating his carbs in a meal, accounting for that with his insulin dose, as well as adjusting for his current level, whether it's low or high.

There's more to it than we originally thought, unfortunately.. we're only now realizing how dangerous/important it is to do continuous monitoring to ensure that he doesn't go too low, especially at night. We got up to test him at midnight and 2:30 am last night, as he was sick with a slight fever, which could throw off his levels, which were a little low early in the evening. Stressful... Sad

At some point we'll get a continuous electronic glucose monitoring system.. I think we have to wait a few months though first.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I guess you get used to the monitoring. DSIL monitors Skyler's blood frequently and they are quite used to it now. It used to be stressful though. It's amazing how we and the kids are able to adjust to things over time. Hugs to you!

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Sorry I'm so long in responding. You are lucky that G is so easy going. It's still hard on everyone when Skyler gets a needle and he makes a scene for his finger pokes...

I had a team-mate who had diabetes. She always had a package of skittles on hand during games and frequently had to test herself between periods. The one thing she said was she could tell by the way she felt whether she needed insulin or sugar... so maybe keeping G in the loop and aware of how he feels will help him in the future?

Glad this was discovered early. I don't see Diabetes as being debilitating, just something to keep track of.

There's also tons of Diabetes recipe books around that really help maintain levels and I know people (with type 2) who manage to control theirs through diet alone. I know this is different from type 2, but the diet is obviously very important to controling it. We should all eat more healthy anyway so diet would help the whole family!!!

Hope everyone else is doing well!

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