My son is newly diagnosed

Parents
1

My 3 year old was diagnosed on July 12.  He hadn't been feeling good for a while; I couldn't get him into his pediatrician, so I took him to our walk-in clinic and they sent us to the er.  When they checked his blood sugar, it was 1600.  They had to transfer him to a larger town about an hour and a half away.  It took all of the first night and most of the next day to get his blood sugar down.  He spent about 5 days in the hospital.   It's a lot to take in and learn in such a short time.  We are doing good so far.  

I'll tell you more about myself; I'm a stay at home mom.  I have 2 children, a 7 year old girl and my son.  My daughter will be in 2nd grade this year, and my son will be in his 2nd year of preschool.  He started preschool early because he was a little delayed in his learning; he's doing much better now and has caught up with others his age.  He'll end up having 3 years of preschool though.   

I'm a little nervous about school starting again.  I'm scared of not being there if something happens.  I know I have to let go and trust every thing will be fine.  After all I can't be with him every moment of the rest of his life. 

I'm trying to learn all that I can about type 1 and nutrition.  I'd appreciate it if someone can point me in the right direction.  There is so much out there it can be overwhelming.  I need some recipes and ideas for meal time.  It can be a challenge with a 3 year old getting them to eat the right things, and to get a variety of foods that they are willing to try.

2

. I am glad you found us.  First, good luck.  You are facing many challenges ahead.  It does get much easier, but some days are a struggle still, we are about 15 months out from diagnosis with our 12 year old.  I can tell you that our daughter is very independent.  She can count her own carbs, takes her own insulin, checks her own sugar, needs reminders and I check to be sure she is doing it, but she is pretty independent.  And that being said, I am terrified to send her to school still. We have no nurse on site.  Several teachers are trained with glucagon, the office knows she comes in for her insulin, but no one checks her dose, no one reminds her if she forgets.  So I worry, but she is independent, like I said.

I also am a preschool teacher. Several years before my daughter was diagnosed, before I knew much about T1, I had a student who was newly diagnosed.   I spent at least an hour talking with the family, learning, and writing notes.  I then felt free to call the parents, and I did, anytime during the day, when I had a question about his insulin or sugars.   Make sure his teachers are comfortable and feel free to call you and make sure you are available if they call.   And call to check on him if you need to.  His safety will be their number one priority, as it is with all children.   Did you get any of the books or the teddy bear from the JDRF?  Those were really helpful in explaining it to the other kids, but honestly, they didn't really care or notice. They were fascinated at first, then didn't really care.  

good luck with the nutrition aspect.   I can say, research backs this up, that a child needs to be exposed to a new food up to 16 times before they will try it comfortably.   Just put it out there on the plate, don't make a big deal out of it, and eventually it won't seem too foreign.  I think us parents all struggle with this part of any child's life!  Good luck!  

3

Hi! I also have a 3 year old son with type 1. He was diagnosed almost a year ago. I remember having a lot of the same fears that you do. The day he was diagnosed, I told my husband I was going to quit my job so he wouldn’t have to go back to daycare/preschool. But then as the days went on, reality set in and I realized that I can’t follow him around forever.

4

Sorry I hit send too soon!

5

We spent a lot of time training his teachers how to handle everything and we are lucky in that the center is at my husbands work so he could go down there and supervise for the first week or so that they were doing everything. Our clinic also said they send educators out to schools. (Of course I didn’t find this out until after the fact). But that may be something worth asking your clinic. As far as nutrition, I tried not to switch his diet up too much. I didn’t want this to be a complete lifestyle change for him. I wanted him to be a “normal” kid. I just do a lot more label reading now. So while I’m still letting him eat things like breaded chicken nuggets, I just try to pick the “healthier” ones. One thing that has also helped a ton is the Perfect Portions nutrition scale. We got it at Target. It’s fabulous for weighing things like fruits/veggies and cereal. A lot more accurate than using measuring cups. The accuracy can be pretty important with such tiny bodies. But I think the most important thing I’ve come to realize is that I can’t beat myself up over every high or low blood sugar. I used to do that and it’s exhausting. As much as type A people like me would love to have absolute control, it’s just not possible. This disease will be perfectly under control some days and then will be completely out of whack on others for absolutely no reason. Just take a deep breathe and roll with the punches. It sounds like you’re doing a great job! :slight_smile: Let me know if you want to connect (or just vent!) on FB and I’ll be happy to send you my info.

6

I was diagnosed at age 4 and am 40 now.  You are right that you will figure it out as you go.

Teachers mostly need to know how to recognize and treat a low.  Talk with the teachers in advance and provide juice boxes to treat lows.  Cake frosting in little squeeze tubes is very effective to treat a severe low in class (they are also great for middle of the night lows when it's difficult to wake your son).   Highs aren't great, but they aren't life threatening.  Over time your doctor will try to tighten your son's blood sugars and A1c.  

In the past diabetics took a set amount of insulin and adjusted their diet to fit it.  But in the last 25 years we've shifted to carb counting, so you eat normally and then learn to count the carbohydrates in the food eaten and take insulin to cover it.  Ask your doctor about this.

There are great diabetes books out there.  Any on this link listed as "Highly Recommended" are good, plus I've listed a few of my favorites.  www.childrenwithdiabetes.com/d_06_b00.htm

"50 Diabetes Myths That Can Ruin Your Life; And the 50 Diabetes Truths That Can Save It" by Riva Greenberg

"Think Like a Pancreas" by Gary Scheiner

"Using Insulin" by John Walsh

The Pink Panther book published by the Barbara Davis Center for Childhood Diabetes provides a good overview for family members or other people who might want to learn a little more. You can access an online version for free at www.ucdenver.edu/.../UnderstandingDiabetes.aspx

The only thing diabetes will restrict your son from is joining the military.  I have played sports, traveled, gotten married, had a (non-diabetic) child and worked all sorts of jobs.  Life is different with diabetes than without it, but it's not the end of the world.  Diabetes has brought both good and bad to my life.

And don't think that because your son was diagnosed at a young age he won't know any differently.  Most of us diagnosed young go through a diabetes rebellion in our teens, but eventually come out of it.  Your son will have to make peace with diabetes as an adult, just like a person diagnosed later in life.  

Take care and try not to be overwhelmed.  You've got the basics and will learn as you go.  One of the blessings of diabetes is that it forces you to become a quick and creative problem solver because it's always changing.  

-Jenna

7

Oh good book link! Thanks for posting that! The pink panther one was definitely helpful. One other one that my son actually likes us to read to him is “I Have Diabetes” by Karri Anderson. It’s simple and has child-like drawings so its easy for him to follow and helps him to understand. Amazon.com

8

Thanks for everyone's replies.  It's good to know I have a place to

come where others understand what I'm going through and can give

helpful advice.  I'm meeting with his teacher and school nurse tomorrow

His clinic is an hour and half away, so I won't have the option of a

diabetes educator talking with the staff at school.  He will only be

at preschool for 2 1/2 hours, and won't need any insulin while he's

there.  He'll just need a snack and his blood sugar checked.  It

would be nice to connect on FB; I think we can all use all the support

we can get.

Thanks for the book suggestions.  

9

My heart goes out to you.  My daughter was diagnosed going on 2 years ago, just 2 days after her 3rd birthday.  Her onset was similar, she was in severe DKA and it was the scariest day of my life.  And now we are all living the life of a T1D, her 3 year old sister included.

I understand the difficulty with meals and snacks.  She can be quite the picky eater, but we have learned that it doesn't mean everything is off limits its just measuring and counting.  She eats chicken nuggets and mac-n-cheese like any other 4 year old, we just control portions and try not to give it to her all the time.

Does your clinic have a nutritionist on staff?  If they do it may be helpful to make an appointment for your next visit.  We have seen ours 3 times now and the routine is to make an appointment annually with her, at least.  She always has new suggestions for food ideas.  One of the simplest, I thought, was have them help you make meals and sometimes they are more likely to try the alternatives if they helped make it.  It works sometimes with my daughter, not always, but I'll settle for sometimes.

Good luck to you and it does start to get easier, and you develop a routine which helps.

10

Hello, I am very new to the forum format and have just joined type one nation today and the first post I come across is yours. I so understand what you are going through, I have a son who was just diagnosed on July 23rd and overwhelmed cant even cover what I feel. Its so much information and I can say that I am understanding the carb counting and we are starting to get into a schedule and I think possibly getting the sugars under conrol for now. I do realize that his sugars will always be up and down and it is very hard to not beat myself up over the crazy numbers sometimes. My son is starting school next week and I am scared to no end. He goes to a private school, with no nurse and they have absolutly no history of ever having a diabetic at this school. They don't seem very willing to go and get the training that our clinic provides and I am worried.  Our clinic is about an hour away, but I have offered to pay for gas, food, etc. I don't know yet what is going to happen. Its a nice small school so I was happy that he wouldn't get lost in the crowd and hopefully be more taken care of. Also trying to find support groups, but am having problems with that. I am sure this all gets easier, so it is nice to come to a place where there are parents who know and understand how I feel. I wish you all the luck in the world and with all the support, we will all get through this.

11

Oh, we all understand.  That feeling of total panic as you send your child, newly diagnosed, off with people who aren't you, who don't understand it like you do.  And such a new diagnosis!   How old is your son and does he know when he is low or high yet?  That was a big turning point for us!   Just make yourself available for phone calls from the staff,  email, be in contact.   Send the staff to the JDRF website, there is a training video for glucagon, and lots and lots of ideas for helping them, there are some one page printouts for spotting highs and lows.   the Pink Panther book is a simple read that is very informative.  Offer that to them!   As a teacher, I understand how hard it is to get to a training like that, but I am sure they want to be involved and help.   I will send lots of positive thoughts for you guys.  I was lucky, my daughter got diagnosed the last week of school so we had the entire summer to learn.  It does get easier.  

12

Oh, we all understand.  That feeling of total panic as you send your child, newly diagnosed, off with people who aren't you, who don't understand it like you do.  And such a new diagnosis!   How old is your son and does he know when he is low or high yet?  That was a big turning point for us!   Just make yourself available for phone calls from the staff,  email, be in contact.   Send the staff to the JDRF website, there is a training video for glucagon, and lots and lots of ideas for helping them, there are some one page printouts for spotting highs and lows.   the Pink Panther book is a simple read that is very informative.  Offer that to them!   As a teacher, I understand how hard it is to get to a training like that, but I am sure they want to be involved and help.   I will send lots of positive thoughts for you guys.  I was lucky, my daughter got diagnosed the last week of school so we had the entire summer to learn.  It does get easier.  

13

Thank you for the advice, I didn't know there was a video for the glucagon. The clinic did give me another copy of the pink panther book to give to the school so that is good. My son is 7 and it has just been so hard for him. Every once in a while he will say to me "mom, I am not normal, I am not like other kids", or "I am embarrassed of the shots at school", you know things like that. He breaks my heart, and we try so hard to reassure him, but know that this is just something he has to go through and see on his own that he is going to be just fine.  I still feel like we are in a dream. We are trying to find him a play group with other kids so he sees that he is not alone and that other kids have to do the same things. Fingers crossed

14

All your child's teacher needs to know is to give your child glucose if the child is in distress or has the symptoms of a low (explain to the teacher how your child normally looks and acts when low).  Then call you.

Do not expect a non-medical person to administer glucagon.  Frankly, I would only let an EMT adminster it as a last ditch effort to save my life.  Glucagon makes you REALLY sick.  A better option is to provide the teacher and office staff with a small tube of cake frosting (or you can buy the more expensive glucose gel from the diabetes section of a pharmacy).  If your child is so low he/she is unresponsive then the teacher can squeeze a small amount of frosting or gel inside your child's cheek.  Then immediately call you and 911.

Severe lows like this are extremely uncommon.  I never had one as a child.  They are more likely after someone has had diabetes 20+ years with many highs and lows.  It's called  hypoglycemia unawareness and happens because the body stops going into emergency mode with a lows so you have no symptoms.  I had hypo unawarness, but it went away once I got an insulin pump and had fewer lows.

What you and your child's teacher are more likely to deal with are normal, treatable lows.  Provide your child's teacher and the office with juice boxes, glucose tablets and other measurable types of quick sugar.  Give specific instructions like, "Give 1 juice box, test blood in 15 minutes, if blood sugar is 80 or below give another juice box."

I don't think it's realistic or even necessary to have your child's teachers go to special diabetes training.  They just need to know how to treat a low and when they are most likely to happen (after gym class, after a test).  And your child should be allowed to use the bathroom and get drinks of water whenever necessary, to manage high blood sugars.  It's up to you and your doctor to find an insulin plan that works with your child's school schedule and your child's abilities.  

Not feeling like everyone else is part of having diabetes.  It does make you different.  And that is like any other challenge... not fun in the short term but it usually makes you into a person of more depth.  My school story is that as a kid I'd go to the office in the morning and afternoon to have a snack; this was back in the 1970's before carb counting and multiple daily injections.  If I forgot, I'd be called to the office over the intercom.  Because of that some kids thought I was so bad I had to go to the principal's office all the time.  =)  Diabetes is nothing, if not humbling and entertaining.  

15

Heading to school with Type 1 Diabetes can be very scary.  I am a parent, though my son is now 23, I was always worried about school.  It is hard to let go enough to let someone else be responsible, even if only for a short time and eventually, it will be longer hours.  I am also a pediatric nurse practitioner and certified diabetes educator.  We are lucky in New York State to have our department of health pay for a cde to go into schools, daycare and camp settings to provide diabetes education.  Each state is different and you may find that your provider will send someone to do education, or a local cde group may provide that on a volunteer basis.  I'm not sure what your state or local resources are, but having an educator go in will help tremendously to give them the knowledge they need and get them comfortable as well.  

I have a different view on glucagon.  My son has required glucagon for seizures related to hypoglycemia.  He has never been sick afterward.  It is recommended that the person be turned to their side in case of vomiting, which vomiting does not always happen.  The glucagon raises the blood sugar quickly and that rapid change can cause you to feel sick.  If the child is having a seizure, it can prevent a steady flow of oxygen to the brain and can affect brain function and development.  We want to prevent this.  The ultimate goal is to work to prevent the lows, but the glucagon is a great tool for emergency situations.  As a mom, I want people to be educated on the use of glucagon.  I want the people my son is with to know how to help him in an emergency.

When properly trained, anyone can administer glucagon.  Many states have legislation or are working toward legislation to allow the training of unlicensed trained personnel to be able to administer glucagon and/or insulin.  Everyone has a personal opinion on the use of glucagon, and I can understand why some people avoid the use of it because it has made them feel sick.  Nobody wants to do something that results in them not feeling well.  And we as parents, don't want to see our children not feeling well, but we do want them safe.  Everyone responds differently to it.  So, for you, it is important to look at safety and how your son has been with any episodes of hypoglycemia so far, understanding that we can't predict how future episodes of hypoglycemia will be. And how comfortable you are with the plans to manage diabetes in school.

Good luck!!!  If you need any help coming up with some things for you to use to train the school staff, let me know.  I could maybe send you a few things to help!  :)

16

Welcome to the "family". :) My son was diagnosed at 16 months ( turning 5 in Nov) so we've been in your shoes. First I would also recommend the "Think Like a Pancreas" book. The author is great and shares a lot of his own personal experiences. He's got some good technical information and a lot of stuff you haven't even thought about. Go buy it. Every easy read.

Second, I haven't seen to many comments about specific snack ideas. Those are fun to share.  LIke jennagrant said, it's all about carb counting. But when they go through a growth spurt, they want to eat everything. Remember 28g ~= 1oz. Get good at conversions.

Drinks - Minute Maid makes a great drink called Fruit Falls. Packed like a Capri Sun and only 2g. Hawaiian punch has sugar free single servings in lots of good flavors for 0g. Mootopia milk is half the carbs of regular milk. Nesquick has sugar free strawberry and chocolate single serving packet for milk that are 1g. Hershey's makes a light chocolate syrup that is 5g per tbsp.

Meals - standard protein good, bread not so good. Buy a food scale. If you can get one where you type in codes to get nutritional info (~$50), it makes it easier. You can get bread that's 9g per slice.  Lunch meats are good just lots of sodium. You get good a eyeballing things. Grapes are about 1g per grape. Apples are about 1g per slice. Watch out for bananas! Good but carb dense. Things like pizza depends on the crust but about 20-25g per slice. Chick-fil-a has a grilled chicken option in the kids meals (grilled chicken; fruit; diet lemonade totals 15g). Tortilla chips are ~1g per chip. Eating out get tricky but you can do it.

Treats - Skittles ~1g each; M&Ms ~.5g each; DumDums 7g; tootsie rolls 4g; sugar free gum ~2g per piece 100 calorie snack packs are great and usually have the nutrition info on them. Ice cream can be tricky if you don't have nutritional info. Birthday parties are fun too. We usually estimate 35g for a piece of cake.

There's a lot more but you'll pick up your own habits and what works for you.

Tim

(Merrick's Dad)