Hi, I'm new here... my son Jonas is 4 and has diabetes :)

I just found out about this forum from the local JDRF posting on Facebook and I'm so happy to find this place!

I tend to be wordy so please forgive me in advance ;)

My name is Crystal and our son Jonas was diagnosed on August 28th, 2010, right before he turned 4 in October. He was very sick, but we didn't realize it. His leg cramps = growing pains. His peeing the bed like crazy = newly potty trained and drinking a lot due to being excited about the potty. He looked thinner but he was 3... he was losing his baby fat. Crabby a lot but again... he was a 3 year old boy!  Didn't occur to us that he was sick. Then one night he was throwing up and we thought he had a belly bug.  I knew something was off because of how crabby he was, thought he was just sick. Next morning I noticed that he had that dehydration indentation on his ribcage, and was confused since he was SO thirsty all the time. We had to cut his water at night because he was waking up with his sheets and clothes covered in urine. When he was trying to talk to us... we noticed his breathing was labored. Scared the life out of me! Hubby took him to urgent care and then called to let me know he was taking him to Children's Hospital because his blood sugar was 531. I don't remember any of his other numbers... it's all a blur now.  

The poor kiddo... all he wanted was crackers.  3 graham crackers, that's all. He would cry and cry that he was so hungry but they wouldn't feed him yet until his numbers came down. It was heartbreaking. He was so little.  

The first month home was hard. He had been told forever now that he could have as much food as he wanted if it was fruits and veggies, now I was telling him he couldn't have it. He was only 3... it was hard for him to understand. It didn't take long for him to get used to the lingo, but boy, it was SO nice when we were allowed to adjust the insulin according to what he wanted to eat.

We've run into typical issues with him. We had people walking past our house at the wrong time and would hear us yelling at him to eat his food because we had just dosed him for 75 grams of carbs and then he went and decided he wasn't hungry. Ahhhh.  So we were freaked out that he was going to crash and so we would yell at him to eat. Our first month was sooooo scary. I swear we had our on call Endo on the phone with us more than anyone else. lol  Tons of high numbers while we were adjusting. Finally he went into honeymoon and is still there now. The last two months have been nice for the most part.


We did have a few days last week where he was high a lot. Called the endo for the first time in a while.  I believe he was sneaking candy canes though since there was one stuck to his new blanket. Then we were wondering why he was low a lot... until we found out that he was hiding his plates of food in his play kitchen.

 

Overall we have all been dealing with it very well. I don't freak over high numbers as much as I used to. We just go with it and try to figure out what went wrong. Sometimes there isn't an answer. We give a lot of water because we find that we don't push it as much as we should. 

 

He's an amazing trooper and we love him so much.  I get sad when I realize that he will never be able to pay for health or life insurance at reasonable rates and I just pray that he gets a good job ... sucks to think of suck things. He's only 4. 

We are bad about contact with the endo though.  This has been a rough semester... hubby and I are both full time students and Jonas' readings have been SO great that I kind of forgot that I was supposed to be sending his readings to his nurse once a week. Forgot to set up his Day 3 education clinic and he hasn't been back for another appointment. I will be fixing this in the next couple of days, but I hope they don't yell at me. I feel like a failure as a Diabetes parent but i hope I'm not the only one. 

His stats if anyone is interested is... he is on 2 units of Lantus, we correct after 150 and he takes 1 unit for every 25 carb grams. He averages about 2.5 units a meal.  I miss our pen cartridges that we got in a pretty Lilly pen at a clinic. Our script was for Humalog disposables and don't dose 1/2 units, which is annoying. 

 

Well that's enough from me I guess. I'm looking fwd to meeting you all!


Crystal

 

 

Hello and welcome. Our daughter Chasey was diagnosed March of 09 when she was 4. Us, like you didn't put all the signs together until she was pretty sick. On the up side though she is now on a medtronic pump and is a healthy and happy first grader. 

I have found juvenation to be a great community of support with wonderful people that offer great advice and clear opinions on issues. I hope that you find everything that you are looking for from these amazing people.

. WHat we do when a kid can't finish a meal she has already had a bolus for is give her a juice box or some milk. Usually she can drink something. A few pieces of candy are always an option too. Try not to let it be a trick to get some candy. You can always split the bolus too if you are not sure if he will eat the entire meal. 

Yelling isn't going to be helpful. Especially if the neighbors can hear it! Your child will amaze you as he adjusts to having this disease. He will grow up fast I'm sure. 

Yeah we give juice and candy too... the only thing with that is he started catching on that we would freak out if he didn't eat all his food and give him treats and he started doing it on purpose. Gotta love this age! LOL And it's not like you can MAKE them eat.  It's already a stubborn age... Diabetes and food issues makes it even more interesting ;)  

We haven't split yet because we didn't want to have to poke him twice so I usually just end up giving him at least two units because I know he will always drink some juice if he didn't eat. I stopped the candy deal... even for his backpack for emergencies. He started to hope that he would get low so that he could get his emergency skittles. ha. 

Oh and no... we definitely didn't think yelling was ok and we don't do it anymore. It was just one of those "getting used to diabetes" things and we were scared to death he was going to die if he didn't eat his food.  We've come a longggg way since that first month and deal with it pretty well now. :) Also it was just a person walking by our house... we live 2 blocks from Historic Cedarburg, Wisconsin and everyone walks around here... we have hundreds of people walking or riding their bikes by our house daily (not so much now that it's cold!) and it's not hard for them to hear what's going on in here. So we weren't screaming or anything but definitely was harsh with him. We were scared. :) It's also fun when we ask him "Do you want us to give it to you in your belly or your butt" when someone walks by and looks at you like you are some perverted freak O.o   Too us a second there to wonder what was wrong! haha

Crystal

If you don't want to do 2 pokes for a meal, you can also give the insulin after - then for just the amount he ate. If he eats good - like sits down and eats everything in a half hour or so - this is fine. That isn't perfect for D care, but avoids food issues of force feeding, drinking, or getting a 'reward' for not finishing a meal. You can change back to pre-meal shots when he is older.

For some reason when my son was first dx'd at 3.5 yrs, he would not want to eat or drink when he was low. This resulted in a lot of pleading and crying (by both of us). Eventually, I would just put him in the car  - kicking and screaming and tell him that he had to go to the hospital. We got to the parking lot a few times but never went in. It was annoying to me - but at least he learned. Now that he is five - he is so good about doing whatever we tell him is needed. Probably the only time we have tears now is if he is SUPER high and wants to eat. I usually make him wait until he starts to come back down and that can make him upset - I think it is the combo of not feeling good, being emotional from high BG and not getting what he wants.

Sounds like you guys are doing a great job and welcome to juvenation! BTW, I grew up in Fredonia, WI, but now I live in Hudson, WI. I love Cedarburg.

I'm not a parent of a child with type 1, but as someone who has lived with it for a long time I can tell you he will lead a very long, successful life with diabetes. There isn't anything he can't do :o)

Welcome to Juvenation! I'm very happy you decided to join us here. As you may have already noticed, there are quite a few other parents here in your situation. You will find all sorts of support and resources for information. :o)

Yep!  We have given him insulin after sometimes. Well hubby gives it after, I usually give it to him after I see him eat for a bit and get an idea of how he is doing. I have no problem waiting a bit if he was low anyway. He was 54 before a meal recently and I knew he would be ok just waiting for his insulin and I wasn't comfy giving him any insulin if I feared he may not eat... not with a reading that low. Juice was definitely part of that meal!

 

I do have a question... is it ok for us to just skip insulin?  We ran into this while in Iowa on vacation. He didn't eat, he just didn't want anything. He was below his target so there wasn't anything to correct on. No food going in ... so nothing to account for. For some reason I thought I remembered them saying that it wasn't good to skip it ... so should we make him eat something just to get some insulin in there? Even if he didn't really need it?  It doesn't happen often. Or he will only want foods that don't even have many carb grams anyway. Like salami and cheese but no bread. He needs to get the carbs too though doesn't he?

 

We had to threaten the hospital too at the beginning. Know what he said?  "I loved the hospital!"  O.o  Now he's back to not wanting to go there thank God!!! 

 

We actually moved from Delaware to Fredonia!  We moved to Cedarburg in August 2009. Love it here, just adore it. The schools have been fantastic. We have a 10 year old son with Autism. He's nonverbal and in diapers still. He's amazing.  The school system has been just wonderful with him and I can't say enough about them. <3  

Where is Hudson?  Do you go to Tosa for your appointments?

 

Generally, the only insulin you HAVE to give everyday is the long-acting: Lantus or Levemir. The Novolog or Humalog is just for the carbs he eats and for corrections - so if he isn't low and doesn't want to eat - no insulin. Or if he only eats no or low carb foods - no insulin. Yes, he needs to eat carbs - because your body needs glucose for energy (esp. your brain!) but he's a little boy and so if he is kind of picky at times don't sweat it. But that is why you are on Lantus and Humalog - it is more natural and more freedom to eat more normally - not on a strict schedule. Note though that you might want to check sooner than you normally would after a meal just to make sure he hasn't gone low.

We also went for a while were my sons I:C ratios were so low that he rarely got insulin with a meal. Like 1:100 - well he didn't always eat even 50 carbs to justify giving a half unit - so then he didn't get anything and he was usually in range at the next meal. That was the beauty of the honeymoon. Sadly that only lasted for 10days or so before we had to start giving little doses more often.

I'm not an endo, but in my experience, you can definitely skip short-acting if he's not eating anything, but never long-acting. But, (I'm not on the pump either) I have noticed I sometimes go low if I skipped a meal even w/o taking insulin. Probably the long-acting in my system. So, I check my BG extra if I've skipped a meal to keep on top of it.

I'd look for "Jessica" on here. Her daughter Riley was dx'ed with type 1 around a year ago and she has 2 sons on the spectrum.

It's so interesting reading about other people's numbers and dosages. Our day 2 class was with a teenager and it was really funny to have everyone going around reading off their doses and Jonas' was sooooo much less. What is your son at now?  We give one unit for every 25 grams and I often find myself wishing my pen gave 1/2 units (without having to go get a syringe that is) ... I would imagine I would really hate not having half units on our pen if a unit was 50 grams. Although we seem to give 2 units more often than not... but there are those times when he's at like 70/75 so I would need that half. 

Thanks for all the replies!  I'm really happy to have found this forum :) 

And thanks, I'll look for Jessica!   I have to say... I'm so glad Malachi wasn't the one who got Diabetes, I have no idea how on earth we would manage a Diabetic diet with a child who lives on pizza, waffles and rice cakes... and has no concept of you saying "no you can't eat anything". He's end up in the hospital as his permanent residence. O.o 

Crystal

I was diagnosed at age 4 too and am 37 now.  No complications or other health problems. 

It sounds like your family is doing great.  There's a lot to learn, but you'll get the hang of it.   Like others mentioned, may just be easier to dose insulin after the meal.  I still do that since I'm not usually sure until I'm finished how much I'll actually eat. 

Also, I used to sometimes get nauseous when low, so if your little one fights you try 7-up.  If he's just being argumentative, get a squeeze tube of frosting.  The novelty of eating a squirt of frosting may get him past the fussy emotions that sometimes come with a low. 

Take care.