1 week post diagnosis


(Stacey) #1

My 1st grade son was diagnosed just last week after being hospitalized with DKA. This is all new for the whole family. The issue we are having right now is that he is at times reluctant to want to eat a meal. He will try to bargain to either not eat or to eat something “that I don’t have to get a shot for”. Any tips for dealing with this? In addition, in your experience how long did they require you do the multiple injections/bg checks before considering a cgm and pump? I know it’s early, but just curious. Thanks is advance.


(Dennis J. Dacey, PwD) #2

Hi Stacey @newatthis18, I feel for your son and can relate to what he is experiencing and I can only imagine what you, as a mother must be feeling and experiencing. But, let me welcome you to our "really not wanted to be in club, and offer a Warm Welcome to TypeOneNation!

MDI, multiple daily injections have been found to be the most effective manner in which we can manage our diabetes - I say manage because TypeOne can never be “controlled” because of so many outside variables such as stress and climate which can affect our BGL - body glucose level. I was a “pioneer” in the perfection of MDI in the 1970’s after having used just one or two daily injections for 20+ years. MDI either by using syringe or pen [or use of a pump] is really effective management.

Addressing your particular question about your son and not wanting meals, I suggest that you do not attempt giving him insulin until after he eats, having closely observed the “how much” and calculate carefully; While injecting after a meal may cause him to spike higher than you want, it is better that than going too low. I’m not a medical doctor, so confirm this with his medical team. I waited 47 years before starting a pump and 61 years before getting a good CGM - I had tested out a useless CGM about 15 years ago.

Not knowing you son, I’d venture a guess and say that occasionally skipping a meal could be OK if that’s what he wants; but also, having observed my kids and grandkids he will be wanting FOOD!


(mikefarley) #3

I’d suggest discussing a pump with your endo. MDI becomes very hard to manage very quickly. With a pump, there’s only one kind of insulin to adjust. I was on MDI for many years, on a pump for 18 years. If you can get your son used to a pump and entry-level carb counting, he will have the flexibility he needs to eat when he feels like it. There will also be less issues regarding, “I don’t want kids seeing this.” With technology like Tandem t:slim and Dexcom G6, you have more monitoring capabilities. The thing is, this lasts forever, and good practices now could help your son avoid complications as he grows up.

Best wishes for you and your son!


(Chad) #4

@newatthis18 I feel your pain. We were diagnosed on OCT 4th. My daughter used to be pretty picky about what she eats. We are now using ADA Food Hub. https://www.diabetesfoodhub.org/. There is also a planner for days and shopping list. We are using this to find new recipes to try out, but we always have a backup. Most of the time it is the leftovers of a meal she did eat so we just throw that in the microwave real quick. We label the leftovers with dates, portions, and carb counts. We normally give her 20 minutes to eat and try to minimize distractions like TV or toys at the table. If its something we know she’ll eat we might give her the injection during or immediately prior to the meal to minimize a spike.
We are talking with Dexcom already to get the G6 CGM and thank God her ENDO approved it. This has some to do with getting sleep but more to do with peace of mind. We are scheduled to talk with our ENDO on the 6th about getting a pump. This is largely because she frequently only gets .5-1 units per meal and most of the time her corrections are lower than .5 units. The pump will allow us to give doses lower than .5 units. We also had to move her Lantus dose to earlier in the day because for the first 6 days we were waking her up and giving her juice for lows. She now gets 1 unit at dinner. I feel you on the lack of sleep. I feel like I live on coffee and fall asleep by 9 every night. Keep it up. We can do this!

Chad


(Charles) #5

I feel for you! Really do!
Coming from my point of view, I’m a type 1 with 4 yrs of experience trying to manage.
Shots are now part of her life, I take 4 to 6 per day. I also have a dexcom cgm. I found that it helps me a lot. I can look at it and see what a cookie does when I eat it. Or a piece of fruit, soft drink etc. if you can get one it helps a lot! An important thing with the dexcom is the Sade app that comes with it. You can share up to 5 people and if you use iPhone, you get alarms just like she does. You can set a delay on it after while so that you dont have to be alerted exactly the same time. I had to make my wife put her alarm to 30 minutes delay cause it’s hard to treat yourself, crash, answer the phone all at one time!

But this can alert you to crashes in the middle of the night and let you know what’s going on. Another tip. This one is personal to me but, once you find some thing that helps when she drops. Put it in a specific place and do not move it for any reason! She needs to know where it will always be! This is one of my irrational fears and I have to know that this is in its place and never moves. I can find it in the dark ( late nite crashes). This will relieve stress on her.
I put it on the kitchen counter, my kitchen is in the middle of the house. Personally I’ve found that 2 Hersey’s fun size splid chocolate bars will bring me up very quickly and gently. If it is a strong crash, I go yeh fridge, agajn keep the preferred remedy in the same place at all times! I get a small Pepsi that are for me only!
Make sure she knows where to find these cures and that they will always be right there no matter what, next inform everyone else in the house these items are hers and hers alone. No one can move them or eat or drink them! Make sure she is with you when this happens! This will relieve her mentally!! The stress of this, is a killer for me. I get very unhappy if it’s moved by one inch. It’s an irrational fear, but it may help her to know something in her life is constant.
As to the shot thing, well on tasing my kids I found that just telling her the truth works best. That there may not be any foods that she can have without having a shot. There may be some, but right now it’s a fact of life. No reasoning or bargaining allowed. I’ve found it best to take the fast acting insulin right before I start to eat, start it out that way and soon it will be a habit. Like brushing your teeth after a meal or washing your hands after going to the bathroom. This the wat we do it. Remember. This is practice for when you are not around and it’s up to her to take care of herself. She has to learn to do it without your help or prodding!!
She seriously is the only person who can manage her sugar levels. As much as you want to do it for her, YOU CANT DO IT FOR HER!!

Right now you have to know what to do and teach her what to do.
I also find that when ever I give myself insulin write in a jog book. I do this just before I take a shot, I sometimes can’t remember if I did it or not. Too many shots, too many days…
Good luck I hope this helps in some small way


(Stacey) #6

Thanks Chad for the reply. I really like the idea of labelling the leftovers with carb count! I have to make a call to end tomorrow, hoping to get the ball rolling on the cgm!


(Stacey) #7

Thanks for your reply, lots of good suggestions! We are working on identifying/counting carbs right now, but it is still a little abstract to him…in time he’ll get it!


(Charles) #8

Whoops thought you child was a girl sorry about that!
That’s an effect of the disease, I get something in my head and can’t change it. I hope. That my suggestions will help.
But what I would like to convey to you is that life is now very different for you and truly has changed.
Being diagnosed at 53, it upset the apple cart completely! I now have turnips! lOL.
But the reason I say these things are because I wish someone would have told me some of these things. Not all are what you may go through, but it can happen. Huge mood swing, saying and doing things with no memory of doing them. Huge temper mental swings, extreme anger, extreme sorrow these are just a few things that can happen.
It’s not every day that when you are dx with something that dr will say to you. Look diabetes will not kill you, but the complications of it cam and eventually will.
It’s a very sobering moment. But. It can be done, since dx, I have never had an A1C higher than 5,9. I average 5.6 to 5.8. Things that eat and drink are not normal for any diabetic out there. I do not fall into the cookie cutter version of what the drs call type 1.
This can be your sons case, or not.

The cgm was very, very helpful to me! It still is helpful on a daily basis. It will give you visual representation of what happens when you eat. How long after you eat does the effects show up. What is normal for you if you eat. How high will jet go.
I have incredible drops sometimes. I have dropped over 100 points in 15 minutes. From 160 to 60. I was watching a movie on tv. It may never happen to your son. But it could. This is why it is so important that he jnows what to do if it does.
The first night I used the cgm, I crashed beliow 70 5 times. I go to bed at midnight and get up at 7 am. I got no sleep that night. I since had to raise my level to 80. So that I have enough time to counteract the drops. The learning curve for this disease can be drastic and immediate. A 180 swing at any time. My endo says I am very well managed and am very disciplined in how I take care of myself.
All these things, are things I wish I had been told. I had and still have no resources to help me, no support groups, nothing or no one to about this disease and it’s effects on me. I am anomalous in my reactions to sugars. Even when I find someone to talk with, my reactions, everything is different, from what they go through.

I tell you these things because this disease affects everyone differently! You need to know and understand that. What makes this so difficult is that not everyone can or will follow a standard pattern. I followed my endos instructions on treatment to the letter, I crashed so hard, every time I ate for the first week. I called and told him what was going on. He told me to follow what I felt was right. After 4 weeks, seeing him 3 x per week, he realized I was different than any other patient he had ever had. My endo was a 40 yr veteran, teacher at the local medical school, and highly regarded nationally for his efforts in treatments.

I tell you all of this because of two reasons.
1, Liife has changed for you and your son. Drastically.
2. If you realize this, life can be managed and things can go on rather “normally”. It will take work, lots and lots of hard work. But, it can go on for a very longtime with proper care.
Your son is gonna mess up, he’s gonna eat or drink things he shouldn’t, he’s gonna lie about it to you, he’s gonna forget to take insulin or take too much insulin. All these things and more, or he’s never gonna mess up and things may still go awry!
It will take him yrs to understand this part, he is only hurting himself in the long run. He is human, a little boy, he’s gonna do these things and the sooner you can make him understand that one point the better his life will be.
Again, I tell you this now to prepare you for tomorrow.To help you to help him. Only because I have no help ad will probably never have help due to my special circumstances.


(Alexandra) #9

Hi Stacey,

I’m Alexandra and I was diagnosed at 8 years old and have had type1 for 23 years now. I went through all the stages. No kid wants to take injections but it is necessary. You just have to keep telling him that.I believe the requirement for getting a pump is one year after being diagnosed. The first two years for me as a kid were an adjustment and it is a big adjustment for the entire family. My parents, grandparents, amd sister would go to all the diabetes classes held at the hospital with me. It’s important that all involved learn how to count carbs, measure food, and administer insulin and know what to do in emergency instances. When I was 9 it was recommended that I go to diabetes camp. It is nice to know that there are other kids going through the same thing and would be extremely beneficial to your son.


(lepley) #10

Hi Stacey,

I was diagnosed at 9 (almost 10); I’ll be hitting my 20 year mark soon! The first few weeks/months are the hardest. Give yourself some grace and give him some grace. It does get better, and it does become your new normal… as weird as that sounds.

I was a little older than your son at diagnosis, so I think I was able to understand a little better about why I had to take shots.
Some of my thoughts might be:
*Try not blame food as the reason for having to take shots. Food or no food; shots are required. (Not saying you are, just a thought.)
*Bribery? Ha ha. I’m not above bribery, even for myself. Maybe with his shot he gets a sweet treat, like his favorite candy/cookie. Obviously just include that carb amount in the shot.
*Have some no/low carb snacks on hand for when he just needs a snack. Sugar free jello, eggs, lunch meat, pepperoni, cheese, pickles, hotdogs, popcorn (measured).
*Distract him with a really cool toy that he only gets to play with while he gets a shot.
*Let him give the shot? Some kids prefer it, some don’t. Or let him give a shot to a stuffed animal while he gets a shot.

You can do it! Just keep trying your best. You’ll find your rhythm.

As far as the pump goes, from my personal experience, I absolutely recommend it!!! It was a life changer. I think most insurances require 6mo to a year before they will approve the pump. I am a long time (18 years) Medtronic user and absolutely recommend them. Do some research to see which will work best for your family. Make sure that not only is “convenience” a factor, but look at patient results; that’s really most important and why I have stuck with Medtronic.


(Adriana) #11

Hi my dougthr and of August was diagnosis with type1 she is in 5th grade but she is happy because we have feith on God she is controlled right now with meals. She eat carbs with everything balance with God you can doit


(Dawn) #12

I didn’t read through all the responses, so I apologize if any of this is redundant. My daughter is in first grade and is approaching her 1 year diaversary. Please take comfort in knowing that while this is extremely overwhelming at first, it really does become more routine.

Not everyone is ready for a pump right away. If your son has issues with the needles, perhaps he is a candidate for the iPort offered by Medtronics. It is similar to a pump infusion set that only has to be placed every 3 days, but instead of being connected to a pump, you inject the insulin into the port and it takes the shot for you. I considered it for my daughter but she came around quickly to the idea of having to take shots all the time. I will say that she doesn’t opt for another shot for snacks… she mostly will just wait until her next meal to consume the treat… and I let that be her choice.

There are pros and cons to the iPort though - so do your research. It does take the shot for you and you get one poke over three days instead of however many you do… BUT - all the insulin is going into one location, which could cause a faster build up of scar tissue (over the course of many years). Also, like with a pump, you can have cannula issues.

You son must understand that eating is important and his body needs that food to be healthy and to be strong. I’m sure it’s just a phase… this is a huge transition for him, so be patient with him. Before long, he’ll take shots in his sleep and he won’t even know it.

One last thought - make sure to pinch up on the skin to pull the fatty tissue away from the muscle. If you go to deep, you can get in the muscle and that hurts more. We also go in at an angle, even though we were taught to go in perpendicularly. It helps us to stay shallower on our very skinny little girl. She’s so slender that we can’t do shots in her belly because there’s no fat there.


(Teresa) #13

Hi Stacey, Regarding not getting a shot…Let your little boy know that his cells need insulin, regardless of whether he eats or not, in order to open up his cells to get energy (kind of like opening a door into a room). Hence the word ‘in-sulin’. But, these are all normal reactions for a newly diagnosed child/even feelings towards type 1, at times, in general. This is such a tough time and I said a prayer for you. My daughter has had type 1 for almost 2 years (in Feb).


(jasontanner) #14

We have 2 sons diagnosed 4 days apart 2 years ago. Our youngest was 7 at diagnosis, also after DKA. We consider ourselves very informed and have done a lot of research. Everyone is different, but we STRONGLY recommend Dexcom G6 and Omnipod pump, and sooner rather than later.

While the Medtronic 670G is the only closed loop system out there, it’s not great for little kids. Being “tethered” is frustrating. Only the Omnipod is tubeless. And the G6 not only almost entirely eliminates finger pricks, but sending data to our phones is crucial. We watch the data all day and are on a group chat with him and the nurse. We also got him an Apple Watch, because there is a Dexcom app, and he can view his BG on the watch without pulling out his phone. It also receives texts so we can text him during the day to eat or bolus.

Our son was a “grazer” before diagnosis. He had to change that behavior quickly. But with the Dexcom, it does help you react better to when your child doesn’t eat what you planned for with the carbs. We are Engineers, but this is not an exact science. Other factors affect BG besides carbs.

Anyway, we have lived with it for 2 years, but it’s like 4 since we have 2. Have also dealt A LOT with insurance. If the device you want isn’t covered, then fight for it. Read the policy with a fine tooth comb, talk to reps to understand WHY, and try to change it. We work for a HUGE company but after 200+ hours on the phone fighting with insurance, we actually got them to change the policy, MID-TERM!

It’s a lot to handle, but your child will become stronger for it.


(John) #15

My son was diagnosed almost 3 months ago at the age of 10 and I would highly recommend the G6 especially for the alarms and the share app which we share with the school nurse as well. My son is interested in the OmniPod as well due to reasons mentioned above. I just wish the OmniPod Horizon would come a little sooner. Seems like OmniPod is a little behind right now.


(Stacey) #16

The dexcom 6 and omnipod are the ones I’ve read a lot about in the past couple weeks and hope they will consider sooner than later. I’m sure insurance will require a lot of hoop jumping! Thanks for the response!


(P.) #17

There is no reason in the world your boy shouldn’t have a CGM right now. It would help him so much to know what blood sugar feels like when it’s heading down or up. Find a doctor who will try to help him get one, is my opinion. I empathize so much with both of you. While he’s getting used to things and taking injections, I would say, don’t let him skip a meal, even it’s just letting him eat his favorite fast food or snack. It is always great to have a T1 diabetes educator or endo, they understand much more deeply what’s going on and have the best advice, I’ve found.