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Occasional Responder
smilingmom
Total Posts: 7
Registered on: ‎11-13-2012
Helpful Response

my 12 year old son was just diagnosed - type 1

Hi

 

My name is Debbie.  My 12 year old son was just diagnosed with type 1.  We just got home from the hospital last night at 4:30, then we had to get his medicines in order and do shots and testing and dinner by 5:30, plus visit w/my 6 year old daughter that we hadn't seen in days.  This is so stressful.

 

I'm trying to do research and learn all that I can about diabetes type 1.

 

The doctors keep telling me that its not my fault, but I still think that I must have done something wrong, that caused this.  Maybe I didn't give him enough vegetables or not enough exercise, or I yelled at him the other day and that made his body do some sort of autoimmune response and destroyed his pancreas.  Could it be the immunizations shots that the doctor persuaded me to get him at his appointment in August that triggered this?   I failed him.  I'm not a good mom.  t's hard to see this happening to my baby.   It's so hard to see him in pain. 

 

He was diagnosed with Diabetes mellitus type 1 wit ketoacidosis diabetes.  He was in the hospital in critical condition.  How did I not know that my baby was so sick.  I homeschool him and he sits next to me and reads and does his math everyday, right next to me on the couch..  I know he was more tired lately, and I attributed that to a growth spurt.  He grew 3 inches in the last two months and he slimmed out.  When I was 12, I got thin all of the sudden too.  I thought that was why he was getting thin,  I though that he was a little moody because he was starting to go through puberty.  He wasn't constantly drinking water or peeing.  He could have died in he hospital.  How could he go from an upset stomach to critical condition in a flash of an eye? 

 

Now I know that his body was starving to death.  I was starving him to death.  I should have noticed that he had lost too much weight.  I should have noticed that he got up in the middle of the night to pee.  I did notice it and was relieved that he wasn't sleep walking like usual.  I should have done something like take him to the dr. when I noticed he was more thirsty, but that only lasted a few weeks and that was on 9/26 and stopped, so then I thought, everythings ok.  He was just at the doctors on 7/13 and he was fine.   I feel devastated that he had to suffer so much at the hospital.  He was in critical condition.  I was and am so scared.

 

Dr. sent him home w/ sugars in the 300's ranges which is high.  Then last night at the 2 am. check, sugars were 70 and tonight at 2 am. sugars were 89.  We are on a roller coaster. 

 

My husband hasn't gone back to work yet and he is worried about his job.  I don' want to be left alone yet to do the shots by myself.   I'm not confident yet.  I'm so tired. 

 

At least the shot w/Lanais didn't hurt him as much tonight.  We used an ice pack on his arm before giving him the shot and he said it didn't hurt as much.

 

Can't wait for his sugars to get under control so he can be back to himself again.  Breaks my mommy heart to see him suffering.

 

He's supper hungry at bedtime.  Not sure why.  He has dinner at 6, then snack at 8, by 9 at bedtime he's starving.  Let him have a sting cheese free snack.  Check sugar at 2 and it was 89.  Dr. said to give him 15 carb snack of crackers and p.b.  He was happy to eat it and said that he was still hungry.  He's hungry all the time.  I guess his sugar levels are making him hungry.  Anyone know of a meal or snacks that would help him feel full longer?  He has 60g carbs at breakfast, lunch and dinner, with 15g carb snacks in between and 1 hour before bedtime.    He's eating way more now than before he was diagnosed.

 

Thanks for letting me vent.  Just needed to get it all out. I'm feeling a little better now.  Only 3 hours till his test.  Yikes. 

 

Debbie

 

 

Frequent Advisor
gsmom1
Total Posts: 376
Registered on: ‎11-03-2009

Re: my 12 year old son was just diagnosed - type 1

Hi, my son was also diagnosed at 12 in dka.  I could have written your letter.  So, no you did not do anything wrong to cause this nor did your son.  You did save his life by getting to the doctor/hospital.  We thought our son was going through adolescense, moody and had the flu.  Then, everything went from bad to worse in less than 24 hours.  He was a skeleton fighting for his life.  Now, he is 17, going to college next year, plays sports, drives, you name it.  many of us have been where you are and felt the same way.

 

So, you need to get some sleep.  You're exhausted and stress levels beyond belief.  I slept on the couch next to my son for over a week after we got home from the hospital.  At the hospital everything was about high blood sugar, all of a sudden when you get home, you also deal with low blood sugars.  For me, the hospital told us we needed to control diabetes so it did not control us.  Therefor, everytime his numbers were off, I felt like a failure.  Nobody tells you that the beginning is rough, their bodies are constantly adjusting and you can do everything the same every day and not got the same result.  Keep a spiral notebook and write down time of every blood sugar reading and carbs eaten and insulin given.  note anything  like, sick, excercise, etc.  Call your endos office everyday if you want and give them the numbers.  they are there to help you.  Your son is starving and his body is trying to get back what it loss.  Get on the doctor and tell them this.  We came home with 50-75 carbs per meal, and our son was in tears with hunger.  He ate every hour.  We gave him scrambled eggs, lunch meat, ham, peanut butter on crackers, peanut butter on celery, sugar free jello.  Then, the dr upped his carbs per meal and snack.  The first 2 weeks they were telling us to have him eat these many carbs and give this much insulin.  Then, we went to an insulin to carb ratio.  In other words, if his humalog was 1 unit of insulin for every 15 carbs and he ate 75 carbs, he received 5 units of insulin. 

 

Hang in there.  You can do it. Your husband does need to go back to work because health benefits are now more important to you.  Please let us know how you are doing.

G 18 diagnosed 3/22/08
Occasional Responder
keeseofwee
Total Posts: 6
Registered on: ‎11-04-2012

Re: my 12 year old son was just diagnosed - type 1

Hello Debbie.

I responded to you earlier but my computer timed out and went off line...grr.

 

I feel for you.

 

2 weeks ago Saturday we bought our 8 year old son to Children's Hospital and left Wednesday with our son and his new diagnosis of

Type I Diabetes. We were luck to catch it before it tuned into ketoacidosis, I cannot imagine dealing with that stress on top of the stress

of diagnosis and new way of life. He was very sick in the ER and it was terrifying but again we were lucky to have caught it a little earlier.

He was drinking a lot and peeing like crazy so his body seemed to be giving us a heads-up.

 

It's easy for the hospital staff to say "it's not your fault" "it's nothing that you did OR didn't do". I think it's natural to think that we did something

wrong to cause this. Both my sons got flu shots back in September, did that have something to do with it? There's no research ( that we have seen )

to indicate that flu vaccine is responsible. You are not a failure and if you were  not a good Mum you wouldnt be on this page seeking information

to help you son, yourself and ultimately you whole family.

 

My son also displayed signs that we attributed to a growth spurt and we thought of  reasons why he would be cranky. Never in a million years

would we (as parents) think this. I beat myself up plenty for 'missing' these signs but they are signs of a healthy growing boy in a 'spurt'.  I'm hungy,

I'm thirsty. We blamed his moodiness on his little brother pestering him. Again, why would any of us think this was the underlying cause.

 

We are now in week 3. Our blood sugars are getting a bit more normal but they are still all over the map. I am terrified to go into his room at

2AM and check his sugar. I'm afraid of what I'll find. I think these are all normal things to feel.  This is NEW and HUGE and FRIGHTENING.

We have so much to learn.

 

My son is also hungry all the time. We count up carbs and factor in the correction to figure his insulin dose. We think we are serving him enough

food but he finishes and declares "I'm hungry". I am really angry. Still sad but more angry. I am trying to stress eating a little slower. I give him about

2/3 of his portion on his plate and then let him have 2nds. It makes him think he's getting more. Is it working? Not sure but I'm trying new things every

day with him.

 

The docs have him on a basal bolus regimine. He takes Humulin insulin before he eats and takes Lantus at bedtime. Not sure if your son is on this regimine

as well.  It gives him more flexibilty if he needs to eat a little earlier or later and the dose adjusts to the amount of carbs per meal or snack.

Is your doctor a pediatric endocrinologist who specializes in diabetes?

 

I agree with the other parent who responded, your husband needs to get back to work asap. Benefits are not an option. I know it sucks, my husband was

home with me for a couple days after returning from the hospital and I was terrified about him returning to work. He did go back and I survived. It was very

intimidating but I knew I had to do it for my kid. You can do it.

 

We have tried to keep things as close to normal as we could. We are back to school, back to CCD, back to karate. We've had a couple playdates with friends

coming over.

 

We all feel like we lost control with this diagnosis. We are trying to do things to make him feel more in control now. At each test and injection we asked him if

he wanted to help. Finally after about week he decided he wanted to wipe with the alcohol swab.  A few days later he decided to do the finger stick himself. He

didn't like it but now he does it at each and every test. He's in control. A few days later he decided to try and inject his own insulin. I could tell he was really

scared (as was I) but after a minute of anxiety he gave himself his dose of insulin.

Every kid is going to be ready to 'participate' at their own pace. Every parent is going to be ready to let their kid 'participate' at a different point.

My 8 year old knows his correction factor and carb ratio. He knows the names of his insulins and which one is day and which one is night.

He's really a trooper. Not saying your son is ready for this yet but it may make him feel more in control.

 

You need to vent, keep venting.

You also need to take good care of yourself so you don't succomb to your exhaustion and get sick yourself. I know, easier said than done.

Maybe some night very soon after dinner your hubby can take care of things and let you go to bed and get a solid night's sleep.

I was afraid to go to sleep even in the hospital with all the medical staff around me. That has eased up. We are learning so much as

will you and your husband.

 

I wish you much luck and strength.

Please know that you are not alone, there are so many of us out there in your shoes.

Grieve, sleep, eat and be strong.

 

Please keep us all posted on how things go.

 

Kath.

 

p.s. Kraft makes a really low carb Zesty Italian dressing. I give my son cuke slices with a couple cherry tomatoes and a splash of dressing as a freebie snack. The total is under 5 carbs so there is no coverage needed per our provider.

 

Occasional Responder
keeseofwee
Total Posts: 6
Registered on: ‎11-04-2012

Re: my 12 year old son was just diagnosed - type 1

p.s.s.    My son does his insulin himself ASSISTED. We 'pinch the inch' and he injects. I didn't want you to think we were letting him do it all by himself.......

Advisor
Dragonstar
Total Posts: 1,109
Registered on: ‎11-01-2009

Re: my 12 year old son was just diagnosed - type 1

First off.. *Hugs!*

 

You didn't do ANYTHING to give this to him, ok?  Nothing, nein, nada!   It happens.  There might be a genetic link somewhere back in your or dad's ancestry that could be what gave it to him, but we all have things in our medical histories, we're passing down to our kids.  It's just back in the old days, (Before 1920 and the discovery and production of insulin), all the people who had Type1 didn't survive, and a lot of times, they didn't know what they died of.   What you do now, is pick yourself up and take care of it by learning as much as you can about it, and teaching him as much as you can that he can pick up.  As he gets older, he'll learn more same as you.  It's more dangerous, but in my mind, I have put it on the level of my daughter having something like asthma or allergies.  She has it, she has the medicines and the training to handle it, (as do I), so we handle it.  It can be more difficult some days but we handle it.  I just thank God that she has something that's manageable with today's medicines.  *age 9-I still remember being in the University of San Francisco (CA) for open heart surgery in 1969 and seeing sick kids that would never go home again*

 

My daughter just turned 21, lives with me still, but we both take care of her diabetes.  I'm the one doing the shopping so I try to get more healthy food we both need and we've managed to drop the junk food habit somewhat.( - looks in work desk drawer at pack of cookes :smileysurprised:)-)  I remind her to test when I'm home and I haven't seen her do any testing within a 2-3 hour span of time.  I feel I nag, but I am almost always asking her if she dosed after we eat, or if she's had her long acting in the morning before I leave for work or at night before I go to bed.  (Her depression makes it hard for her to remember to do stuff at times)   You'll get the hang of this. You and dad there will learn to help him out and keep him going. 

 

And if he's hungry?  Feed the boy!  His body wasn't able to properly use the food he ate before being Dx'd so yeah, he was literaly starving and lost that weight.  Plus, from what I've always heard, boys that age till their early 20's are constantly hungry all the time!  :smileyvery-happy:  Again, wasn't your fault!  No one knew.   Now, you can fatten him back up and get him back on his feet again.  Expect him to be hungry and possible tired all the time.  This is normal as his body starts adjusting to having food again and working properly.  You know how you always feel tired after eating?  He's like that but more so now.  I know you're scared and worried, but you got us now to help out.   The people here have good advice, experience in a ton of things with their kids and type1, plus we're a great place to cry and/or vent when you're upset.  Glad you found this place.  And if you need an idea of how well he'll do later in life, read some of the Adult 1 forum.  That's what gives me hope that my daughter can have a near a 'normal' life as possible even with D.  There's people there from all professions that have it.  Heck, even my daughter's doctor (PA) has type1.  He's been the best thing we found to help her out with it.

 

 


Mother of Courtney, Dx'd Type 1 in 2006 at age 14.

Self: Dx'd "Pre"-Diabetic 8/8/14 *and we all know what that means*
Frequent Advisor
t1wayne
Total Posts: 1,036
Registered on: ‎10-30-2011

Re: my 12 year old son was just diagnosed - type 1


smilingmom wrote:

Hi

 

My name is Debbie.  My 12 year old son was just diagnosed with type 1.

 

The doctors keep telling me that its not my fault, but I still think that I must have done something wrong, that caused this.  Maybe I didn't give him enough vegetables or not enough exercise, or I yelled at him the other day and that made his body do some sort of autoimmune response and destroyed his pancreas.  Could it be the immunizations shots that the doctor persuaded me to get him at his appointment in August that triggered this?   I failed him.  I'm not a good mom.  t's hard to see this happening to my baby.   It's so hard to see him in pain. 

 

NOTHING YOU DID OR DIDN"T DUE CAUSED THIS!  Your son has inherited certain genes - contributed by both you and your husband, if neither of you has the disease - and while something like an illness or injury may have TRIGGERED it to happen at this point in time, it was inevitable if the genes are there; something would have triggered it eventually - even cold weather is suspected at this stage of the research.  And for the record... his pancreas has NOT been destroyed.  The pancreas serves several functions, insulin production (& release) being one of them.  The pancreas is like a raisin cake; the "raisins" are something called the Islets of Langerhans, and therein are the Beta cells which produce the insulin.  You son's immune system has destroyed those cells ONLY.

 

He grew 3 inches in the last two months and he slimmed out.  When I was 12, I got thin all of the sudden too.  I thought that was why he was getting thin,  I though that he was a little moody because he was starting to go through puberty.

 

Two points here: I was dx'd at 11 yo, and I am the same height now that I was then - 5'2"; my dad was the runt of his family, at 6'0"; my mom's family were all over 6'.  Pay attention in the next few years to his growth; if it starts to lag, there are things they can do to help nowadays. As for puberty... fortunately, he's a boy, so it won't be as stressful as it is for a girl, but it will affect his body's response to food, insulin, exercise, and hell, the rising and setting of the sun. 

 

Dr. sent him home w/ sugars in the 300's ranges which is high.  Then last night at the 2 am. check, sugars were 70 and tonight at 2 am. sugars were 89.  We are on a roller coaster. 

 

T1 blood sugars ARE a roller coaster; that's just the way it is.  I don't say that to scare you: it is manageable, and can be kept within reason, but it will take some time to learn to control it, and he will always be susceptible to BG swings with little apparent cause... especially as he goes through puberty.  I'm 57, have been T1 for 46 yrs, and just yesterday had a severe low blood sugar event from out of the blue while getting dressed in the morning.  I dealt with it, with some help from my wife, but it still happened, and unexpectedly.  And I actually have an excellent track record of catching it early.  HE will need to learn to recognise the symptoms, because he'll feel it long before you can see it.  As for nighttime lows... checking regularly is a good idea, and as you get some practice, you'll learn to get him thru the nite w/out any lows.

 

He's supper hungry at bedtime.  Not sure why.  ...  He's hungry all the time.  I guess his sugar levels are making him hungry.  Anyone know of a meal or snacks that would help him feel full longer?  He has 60g carbs at breakfast, lunch and dinner, with 15g carb snacks in between and 1 hour before bedtime.    He's eating way more now than before he was diagnosed.

 

 It's important to learn how different foods are digested and affect BG.  The over-focus on carbs nowadays annoys me; simply put, different types of food are digested and absorbed at different rates.  For example, sugars are absorbed and into the bloodstream in minutes (if not seconds); fruits are high in sugar (fructose).  They won't keep him full long.  Simple carbs (like bread) are absorbed next-fastest, and only last a couple of hours in the system; proteins are absorbed more slowly (and lower in the gut) and last longer and will keep him fuller longer; fats are last-absorbed.  So... spend some time learning about how mixing different components into a meal can stretch the time frame it "holds him over".  For example... peanut butter, which is high in fats and protein, when spread on crackers, which are a simple carb, mixes with the cracker as he chews it up and swallows, and this will slow the absorbtion of the carbs, as well as provide the longer-lasting protein and fat.  As for his increased hunger... now that he's receiving insulin, his body is able to digest his food, and it's craving it; also, there's the growing and the puberty going on.

 


Get the book, "Think Like a Pancreas".  It's an easy read, and full of good advice, in layman's terms.

Don't blame yourself for any of this... it can be managed, and your son can have a full life.  I mentioned I was dx'd at 11 yo; at that time, the specialist said I'd have to quit scouts, not engage in sports, never marry or have kids.  Today, we know better:  Before I was 20, I became an Eagle Scout; a pilot; certified scuba diver; swim//dive instructor; rock climber; played soccer in college; have 3 kids; coached and reffereed soccer for all 3 of my kids, and now my granddaughter.  Your son will be fine if he just takes it seriously and learns to manage his condition.

 

Good Luck to you all!!

 

w.

Wayne T1 May 1966
MDI; 46u Lantus Basal
Responder
mel2l
Total Posts: 14
Registered on: ‎05-04-2012

Re: my 12 year old son was just diagnosed - type 1

I am so sorry you and your son are going through this.  It is very hard and I still try to blame myself some days.  It just isn't fair.   Something I have said many times over in the past year, is "if this is the worst thing we have to deal with we are going to be okay."  Diabetes is an incurable disease and as horrible as that is, it is very treatable and doesn't hinder your son from living as full of a life as he wants if he doesn't let it.  

 

As was said before, *I* could have written your letter.  My son is now 13, diagnosed a little more than a year ago and doing great now.  He just started on an insulin pump last month and it is wonderful.

 

I couldn't imagine my son being hungry all the time and I know you are trying to obey doctor's orders, but most of the time it is just a guide.  My doc also says X-X number of carbs per meal, but he eats what he wants and until he's full and gives enough insulin to cover that amount.  Talk to your doctor about it, but also don't be afraid to learn and do things on your own.  It will help you in the long run and you will become more confident in that over time.  Believe it or not. 

 

Your son is lucky to have you.  Things will settle down as you find a new normal, but remember the BG number is just a guide to help you know what to do and there are many reasons it could be up and down and doesn't mean you or him or anyone has done anything wrong.  

 

We are here for you.  Call on us anytime.

 

 

Responder
Njbel
Total Posts: 13
Registered on: ‎11-30-2012

Re: my 12 year old son was just diagnosed - type 1

Hi Debbie,

Hang in there! The first few months are the hardest. My son was also diagnosed at age 12 on 1/28/08. He is now 17, a high school senior, Eagle Scout, and getting ready to head off to college shortly.

 

We had no history of diabetes in the family but he suddenly started wanting to have a nap before school, when he had always been up first and full of energy. He was also thirsty and peeing a lot. I knew these were signs. His brother noticed him getting up in the middle of the night to go to the bathroom, so I started getting really worried. Next night he wet the bed. I called the doctor immediately and told her I thought he had diabetes. At first she didn't think so, but we brought him to the office and she tested him. Then came the ER visit and 3 days in hospital. Fortunately we caught it early, but we didn't really know anything about the disease. The needle stage is really hard and it was horrible watching him try to decide if he was really hungry enough to endure a second shot at dinner or if he could stay a little hungry till the next meal. Insulin shots are hard for anyone but especially for growing boys who are always hungry.

 

It's overwhelming at first and extremely stressful but there is light at the end of the tunnel.  Four months after diagnosis he went on an insulin pump and hasn't looked back since. The pump means one 'shot' every 3 days to change his infusion site but gone are the shots with every meal. He still has to test 4-6 times a day but it's a lot easier to manage.

 

The first months are the hardest. By this time next year it will be second nature to you, and him, and you will be less stressed. The most important thing is to be honest about it. Tell him that he has to monitor everything - and bolus for everything.  Cheating is not an option and will only result in complications down the road. Don't get mad at him if he does cheat in the beginning to avoid a shot. Just explain that it's really important to take insulin to cover everything he eats. We found it easier to give his shot after he finished eating rather than before so that seconds didn't result in another shot, but you should check with his doctor first.

 

It's a tough life with diabetes, but it's not a brain tumor. He's going to live.  Diabetes is not curable (yet) but it's manageable and he can go on to live an active life. There's no reason he can't do anything he wants to - he just has to check his sugar first!

 

Good luck!

 

Occasional Responder
smilingmom
Total Posts: 7
Registered on: ‎11-13-2012

Re: my 12 year old son was just diagnosed - type 1

Thank you for your support Wayne. 

 

Things are calming down now.  I read the book you suggested, plus a million others from the library. 

 

My son is doing well.  We just switched him to the insulin-pens today.  He did his first shot on his own today (4 of them today).  He was so relieved that the shots didn't hurt as much.  He was able to give himself a shot to cover a snack at a Christmas party. 

 

Sorry I didn't respond sooner.  Things are still settling out.

 

I'm so glad to hear of all the things you have been able to do.  It doesn't sound like this will hold him back if he doesn't let it.  I'm glad that he will be able to lead a full life.

 

Blessings,

 

Debbie

Occasional Responder
smilingmom
Total Posts: 7
Registered on: ‎11-13-2012

Re: my 12 year old son was just diagnosed - type 1

Thank you.

 

I took your advice and I have been keeping track of everything.  This has helped me figure out some of his highs and lows, but not all of them....  Many are still a bizarre mystery. 

 

You are so right.  In the hospital fighting the high, then when we got home, fighting the lows.  We all feel like we are on a roller coaster.  My son doesn't feel good when he is too high or too low.  I've made it my job to try to minimize them as much as possible. 

 

Today, we switched to an insulin-pen.  We feel free!  No more having to feed the insulin every 2 hours.  Now, he can eat when and what he wants and just cover it with the insulin. 

 

Thank you for your support.

 

Blessings,

 

Debbie