Sofia's Daddy: Father of 2 year old Type 1 - Help!

General
#1

Hi all, wanted to introduce myself. Not sure what I'm doing here since this weird sharing my thoughts online but here goes. 

January 2011 my 22 month old daughter Sofia was diagnosed with Type 1. We were rushed to the local children's hospital following days of heavy urination, excessive thirst and constant irritability - you know the symptoms. The pediatrician on site confirmed the diagnosis - BG over 500, likely a day or two from full-blown DKA, which I thank the Lord never happened. I look back know and want to cry at all the times I picked her up and didn't know why she was so lethargic, eyes sunken in, barely able to move; or so high that she couldn't focus or stop screaming. 

Fast forward, and here we are. A year and a half into the diagnosis and I'm ready for it to heal. It should be gone by now, right? Well - I'm starting to enter the acceptance phase and it's hitting my wife and I very hard. I know nothing about moving forward, other than the guilt I feel when her numbers are off (which is 95% of the time) and the stress it puts on our marriage. We blame each other for poor numbers, bad days...anything to take the pain off of the reality that our little 2 year daughter - daddy's girl - has a fatal illness. 

I think other than that, the challenge is getting a two year old to eat. Anything. She's a little princess and it's tough to tell her anything about diabetes - why she gets shots, why we wake her up in the middle of the night with juice, why she gets to sleep in the bed with mommy and daddy when her older brothers (ages 8 and 5) don't.

Anyway - I'm getting beat down, depressed and have OVERWHELMING feelings of guilt for not being good enough at taking care of her. Is this normal? Am I a horrible parent for feeding her mac n cheese, yogurt? sandwiches? strawberries? I do the best I can as a working father. Guess I just need to know there are other parents out there going through what I am. 21 million people in the country with diabetes; less than 5% are Type 1s = and not a lot of those are under the age of 2 !!!  I feel isolated, GUILTY and overwhelmed. I can't accept this. Sofia will need shots for the rest of her life. Every night when she gets older that she's not sleeping in between her mother and I, I will not sleep. How will she go to college? Taking care of herself? Drinking? Sports? The stress of finals? Sorry to vent - I just always thought the "Acceptance" stage was easier than "Denial". 

For some reason, it's really hitting me hard now. 

 

#2

What you're are feeling is normal.  It won't last forever.  You know how in your marriage or as a parent you have days that are smooth and other days when you want to run away?  Diabetes is like that too.  

Your daughter's diabetes is only fatal if she doesn't get her insulin for an extended period of time. Chances are she's going to live a long, full life.  That doesn't mean she'll be thrilled to have diabetes or that she'll never struggle with it or be frustrated, but it will not ruin her life.  Though none of us would choose it, most longtime diabetics would say that diabetes has benefitted them in some ways.

I was diagnosed when I was 4 and turned 40 this year.  I played sports, had friends, worked since I was 15, got top grades on my SAT and ACT tests, was a camp counselor, went to college, partied too much in my teens and 20's, took road trips with friends, got married, and now I'm raising my own (non-diabetic) son.  When I was younger I skipped shots or barely tested out of teen rebellion. But here I am, all these years later, complication-free and living my life.  Now I want to take care of myself so I can retire someday and be here for my grandkids.  There are lots of longtime diabetics in the world living normal lives.  I plan to be one of them and there's no reason your daughter won't be one too. The only thing diabetes would prevent her from doing is serving in the military.

It takes time to come to peace with diabetes.  Every person manages the stress and demands of it differently.  There is no right way.  You just have to figure out what works for your daughter and your family in real life.

Try to find a doctor whom you like and who takes a real life approach to diabetes management.  I was blessed to have great doctors as a kid.  

I did shots for 25 years but had frequent highs and lows.  Once I switched to an insulin pump my numbers dramatically improved and I rarely have lows anymore.  A pump may not be an option now, but keep it in mind for the future.  There are good books like Gary Scheiner's "Think Like a Pancreas" or John Walsh's "Pumping Insulin" that give a good overview of pump therapy.  

You sound like a good dad.  Don't be too hard on yourself.  Just treat the highs and lows as they happen and enjoy your great family.  

#3

Thank you so much, Jenna. It's good to hear that you've been successful in managing your T1 and making it just another part of your life. Given that you were diagnosed years before the technology that we have today, I can't imagine what a challenge it was for a 4 year old.

I have only heard good things about the pump and at 2 years old, it's a little scary to think about but I really want her to start right away. The doctor says however that with the highs and lows she has (the range she has) we need to learn to manage those before she goes on a pump. But we told him  - isn't that the reason for a pump in the first place? It's a struggle, but we're getting there...

What was your pregnancy like, if I may ask? I often wonder whether Sofia will be able to have a healthy pregnancy being a T1. Did you still take insulin? (I'm assuming expecting mothers do since it's not an option, really). How about your daily routine - did it change? Are there extra screenings / test the doctors put you through when your pregnant and T1?

Thank you a ton for your reply - hearing from someone that was diagnosed near Sofia's age and how you dealt / deal with T1 is huge.

#4

On another note- Sofia was very high last night. She sleeps between mom and I and I was awoken by a pool of urine if that tells you how high she was. (300+) Remember - we're talking about a 2 year old who 99% of the time only wants to eat cheerios and carrot sticks...(she had also had a cup of milk within the last hour)

That's when I feel the most guilt. I don't want to give her a dose in the middle of the night since we fear the possible low score thereafter.

Even though you're on the pump, do you (or your spouse, etc.) regularly wake up in the middle of the night to check on your levels, etc? Whether you're 4 or 40, the risk of a mid night blood sugar is the same, of course.

Do you ever get so high that you have to pee more than average? Sorry to be so up front; I'm wondering how high you have to be before your body begins flushing out the glucose / sugars via excessive urination. which then results in increased thirst, and all that good stuff...

#5

Hi! I'm sorry first of all that you are having such a hard time excepting your daughter's diabetes. I've been a type 1 diabetic for 40 years now and have been living a very good and healthy life. Acceptance is the first and hardest part of having diabetes. This first step is the most important part of being able to live a healthy diabetic life. Diabetes, as far as I'm concerned, is no longer a fatal disease. Diabetes can be controlled with insulin/ meds, healthy food and exercise. I eat yogurt, strawberries and the other foods that you mentioned and like most foods enjoy them in moderation. My whole life I had people telling me, "Are you suppose to eat that?" and it always made me so angry. Diabetics can eat most foods. Of course there are somethings that we should all avoid. Foods like sugar or foods that have a high sodium count or high fat.  Please don't feel guilty for your daughter's diabetes. It's not your fault! It's not you wife's fault! It happens. You just need to accept and move forward. There are also support groups available for people  and parents of children with diabetes. You may want to think about joining a group to talk to others that feel like you do. Education is key to living a good healthy life when you or your child has diabetes. I was newly diagnosed when I was just entering college. I was petrified! Back in the day, there were no glucose  meters or insulin pumps to help me live  a better more controlled life. Now, with pumps and continuous glucose monitors, life is easier and diabetics can manage their disease easily. It will be second nature toSofia. Good luck on your journey!

#6

My son was diagnosed when he was 2 years old.  I don't know what your experience has been, but let me share my experience with you.  When my son's numbers were high or low I felt like a failure.  I would spend too much time  trying to figure out  what I did that caused it.  You know what I finally figured out?  It didn't really matter what the reason was behind it, the solution was to remedy the situation.  You can speculate all day long as to why they are high or low, but in the end it doesn't matter.  I don't know if anyone has ever really had the ability to shut that off completely (I haven't)  but I promise you it does get better.  Even worse was the times that his numbers were good a couple of times in a row and I was convinced that maybe his diagnosis was just a mistake.  Unfortunately, that didn't end up working out in my favor, but you can't blame me for trying, right?  

If you are looking to place blame, there is only one source that is accountable and that is the disease itself.  You don't blame yourself or your wife when your child gets a sore throat or when they have symptoms from any other virus, right?  This is no different.  The side effects are more serious, but they are all caused by diabetes.  

Please don't look at diabetes as a fatal illness.  Many years ago it was a death sentence.  That is far from reality these days.  Your daughter can do anything she wants with her life and be as successful as she wants to be.  People with asthma carry inhalers, our kids carry diabetes supplies.  It's all a matter of perspective.  With the way things are progressing diabetes may be a thing of the past before we know it.  

My son did not like to eat  when he was young and it was a real nightmare when he had lows.  You have to feed them what they like to eat.  I think one of the biggest challenges we face is trying to adjust our food to the diabetes.  As long as she is getting enough insulin to cover her carbs (and she doesn't have any other dietary restrictions) she should be able to eat anythning she wants.  It's the type 2 diabetics that have to really limit their diets.  I remember being in tears watching the other kids eat candy handed out as a reward amd my son looking to me asking why he couldn't have his.  Those days are long gone.  He can eat what he wants, when he wants and we just make sure to dose him for that.  BTW he is 10 now.  

We got my son his insulin pump when he was 3.  It was such a huge change for us.  It gave us the freedom to eat when and where we wanted.  No more slave to the food schedule for us.  I couldn't be happier.  We got his dexcom for him when he was 4 and I can't imagine life without either of those tools.  I hope that when the time comes for you that you will have the same experience.

Have you ever considered giving her a smaller correction dose of insulin to help her with her overnight highs?  There will come a time where you will just know what the right amount is.  Sometimes when the correction dose sounds like it might be too high I will just give 1/2 of what it says.  At least it would help bring her number down a little until you are able to figure out what that right amount is.  

Since my son was diagnosed so young he doesn't remember a time without diabetes.  We have always taught him that taking care of his diabetes is a priority and it is simply a way of life.  It doesn't bother him and I think the thing that amazes me is that he is already making suggestions about how to best care for his diabetes.  He doesn't hesitate to let people know about it and is always happy to answer any questions that people ask.  It is funny that his friends read about dibetes because they want to uderstand what it is about.  

There are so many of us out here living the same nightmare.  I hope that this helped at least a little.  

#7

Hi, I don't have experience with being the parent of a type one diabetic, but I myself am type one and have been since I was 4 1/2 (I am now 22). I was oblivious at that age, but later in life I came to realize how hard it was for my parents in the first few years after my diagnosis. It's as if they were diagnosed right along with me. My blood sugars were out of control. My body was changing so much with growing- they would find a dosage that kept my numbers acceptable and the next day or two that dosage didn't even apply anymore. You are not alone. It is so difficult to keep numbers under control so young. And your daughter is even younger than I was when I was diagnosed. My parents have told me that when they had to give me shots they felt like crying every time. It is certainly a challenge to live with the disease, but to have to deal with your own baby having it... I have a 2 1/2 year old daughter and the thought of her ever having the disease breaks my heart.

Your daughter will come into her own with her disease. You will be surprised how she adapts to it, believe me. By the time I was 7 I could tell when I was too high and too low. I did my blood tests and shots by myself. My parents drew them up for me, of course, but I chose the spot and did them myself. My parents kept a record book of my numbers and insulin intake, but I had my own book they got for me to start learning how to keep the record by myself. They taught me how to read labels on food for serving size, carbs, and sugar. And I still had issues with my numbers even at that age, but it will get easier- I promise. By the time I was 10 my numbers were under control. I had issues again with numbers control when I went through puberty, but they were much easier to correct because by that time I was old enough to understand and I knew so much more about my body and how to identify how I was feeling. I am now 22, I had a wonderful, healthy pregnancy with my daughter, and sometimes I still struggle with my numbers, but overall I am very healthy. Through my childhood it was definitely a continued learning experience on how to control this disease. And I finally have the hang of it. Your daughter will go through similar experiences. And truthfully, this disease has pushed me to be healthy. I eat healthy because junk food sky rockets my numbers, I run 3 times a week, and I go to the doctor every year to get checked over. That is more than I can say for a lot of my friends the same age. I would not go as far to say this disease has been a blessing, but it has pushed me to be a healthy person.

Anyway, sorry I kind of went of on a rant there at the end, but I hope my experiences help you and your wife with your precious daughter. I know it's hard. And unfair. And so, so many other things. But keep your chin up and keep doing the best you can- that is all you can do, my friend. And as time goes on it will get easier. Best of luck!

#8

Your previous question- "Do you ever get so high that you have to pee more than average? Sorry to be so up front; I'm wondering how high you have to be before your body begins flushing out the glucose / sugars via excessive urination. which then results in increased thirst, and all that good stuff"

Yes, for me at least. It doesn't start to happen until my blood sugar is at least over 300 (and probably due to the ketones being added into the equation once we get to this point) but after that water just runs right through me. I can drink a whole glass of water and have to pee a minute later.

#9

I'm glad to answer your questions.

Highs definitely cause bedwetting.  That extra glucose is cleaned out of the blood by the kidneys, and then they are flushed with water.  High blood sugars also mean the cells aren't getting glucose, so the fatigue plus overly full bladder make it hard to avoid.  Especially in young children, who already sleep so heavily.  I wet the bed because of high blood sugars periodically through my early teens.  Even happened a couple times as an adult.  My blood sugars were unusally high though.  I doubt your daughter will have the same struggles if her doctor can find a solution for the overnight highs.  

For now, you can use plastic sheets and wake her up to use the bathroom before you go to sleep.  I wouldn't give a correction dose of short acting insulin without first talking to your doctor.  It can be really dangerous because insulin rates vary a lot through the night.  

The highs and lows your daughter has overnight are probably caused because her long acting insulin (like Lantus or Levemir) gives a flat dose.  But our bodies need different base rates of insulin at different times of day.  A pump actually allows you to dose the insulin to exactly what you need.  I use 6 different base rates of insulin that vary between .35 and 1.4 units per hour.  With a pump I've fasted for 24 hours with steady blood sugars.  My blood sugars are typically about the same in the morning as it was when I went to sleep.  With shots I never knew if I'd wake up to 300 or 30 and it was very frustrating.  I usually do test if I wake up in the middle of the night, but I typically have normal blood sugars.  And thankfull I've not wet the bed in 20 years.  Sure my husband is glad too. =)

I didn't plan to have children because of my diabetes, but thankfully had an "unexpected blessing."  Turns out all my fears and the movie Steele Magnolias were completely wrong.  A type 1 diabetic pregnancy is considered high risk.  But it does not really cause any big issues until the end, when most OBGYNs will pressure their type 1 patients to either induce early or have a cesarean.  

Type 1 expectant moms typically have extra doctor appointments and ultrasounds, nothing unmanagable.  I worked up until the day I delivered.  During my pregnancy I tested more often and looked up carbohydrate counts to keep my blood sugar in good range.  With a pump I had a 5.1 A1c and my son was born with a normal blood sugar.  In the 3rd trimester pregnancy hormones inhibited insulin (similar to how growth hormones affect kids) and my insulin dose went from 45u a day to over 100.   During labor I wore my insulin pump and had fairly normal blood sugars.  Eventually I had a cesarean and went on an insulin drip during the surgery and post op.  Then a weird thing happened.  I'd been insulin dependent for 28 years at that point, but for a few weeks after my son was born I needed no insulin.  Think it was a combination of the post-pregnancy hormones, breast feeding, and sleep deprivation.  It doesn't happen to every woman with diabetes but I have heard of others who have had similar experiences.  Eventually my insulin needs went back to normal.

Type 1 does not have the same genetic link that type 2 diabetes has.  This ADA webpage will give you an idea of the chance your daughter will have of passing it on.  My son has a 2% chance of developing diabetes.  That's higher than average, but not so high that I worry excessively.  www.diabetes.org/.../genetics-of-diabetes.html

#10

I just felt like I should respond to your post, and just say thank you.

I have had T1D for 10 years and was diagnosed when I was 12. My older brother also has T1D, and he has had it for the past 20 years. Your post really opened my eyes to what my parents had to go through with my older brother when he was diagnosed at age 4. By the time of my diagnosis I would call my parents pros at the whole D thing, if one can ever be a pro at this difficult disease.

Your post opened my eyes about something that I probably should never have done to my parents. I used to, although only jokingly, blame them for the genes they gave me, saying it was their fault that I had Diabetes. Reading your post, I now know that I should never had said such things to my family. It probably hurt them more I could imagine. They were/are great parents to me, and have done everything in their power to give me everything, and to live my life to the fullest even with Type 1 Diabetes. I don't thank them enough.

I want to say you already seem to be doing awesome! You are there for your daughter, and saving her life every day. She will thank you, someday, for doing such an awesome job, and for keeping her alive. Young children are being diagnosed with T1D all the time, and your not the only father going through this!

I am currently living on my own in New York for the summer, while my family lives in Michigan. I live away at college, & have had the college experience. I don't always eat salads and fruits, I enjoy my carbs, ice cream, cereal, and chocolate, and will eat them all (in moderation)! I have studied abroad in Italy for 2.5 weeks, done a million different sports in my lifetime, and lived through the stress of finals! It can all be done! Type 1 Diabetes should not, and will not limit your daughter about what she can and cannot do. Technology is continuously changing for the better, making living with this disease easier.

I again want to thank you for also opening my eyes about what parents of T1D's go through. Keep up the great work! You will get through this, and your daughter will live to see a bright and happy future thanks to you!!

#11

My daughter is 12 and she still has trouble staying dry all night. It wasn't much of a problem before she got type 1. 300's are at least a weekly occurrence. This week she is low all the time. I know a few people with toddlers that have type 1. Let me know if you want to contact them. Message me by making me your friend here.

My wife wakes her up every night at least once. She has been on a pump for three years. A pump doesn't allow you to reduce testing.

#12

Hi.  We have custody of a 5 yo with T1D.  We just got him this year in January.  We were doing the same thing you and your wife are, blaming ourselves and each other for his highs and lows.  I found that keeping logs helped tremendously.  We keep a food log and a log of every meal; carbs, BG and dosage.  Then I can see what he had eaten that may have made him have that high or that low instead of feeling like it was something I did wrong.  They helped show which foods made his BG higher than it should.  It also helped to make me realize that, some days, just his growing little body is making his BG crazy.  I guess what I am saying is, there are a million and one reasons his BG could be high, and it's not something I can control all the time.  As long as we are feeding him healthy meals and offering vegetables, not that he will eat all of them, and getting him some exercise, we are doing good.  I just had to learn to, as someone said above, deal with the high or low at that time, and move on and not be so hard on myself.  I tell him all the time, he can do whatever he wants to and that the diabetes won't stop him.  I've found that this little mantra also helps me to deal with his T1D.   Hope this is helpful.  :)