My son has just been admitted to the hospital with what is likely Type one Diabetes.
We’ve been trying to get him into the Doc since Monday and finally got him in today. We were concerned because he started frequently, every 30 minutes to a couple hours, urinating. This AM his Ketones were up and had a blood sugar level of 500.
Just wondering if anyone has any experience with this and what should I look out for and or expect.
They will be monitoring today and tomorrow to find the proper insulin levels and hopefully he will be released tomorrow. I’m supposed to be taking a class at the hospital during that time as well but any other advice would be appreciated.
I have had Type 1 diabetes for going on 33 years without significant major complications. If he manages his diet, exercise, and medication and tests as prescribed, there is no reason he cannot live a long, active life. They will try to “scare” you–and I mean that in a good way–when you meet with the nurses, dieticians, etc. They will tell you all the bad things that can happen to him. But, that is mainly, IMO, so you will pay atttention and take the disease seriously. Just take it as one of those things that life hands you, get the “why me/him” atttitude behind you, and deal with it. And, my thoughts are with him.
Matt - my 7 year-old son was diagnosed two years ago and he is doing well. While it’s a horrible disease, it can be managed and your son should live a long, happy, healthy and active life. My son now has an insulin pump and we’re just getting the hang of it.
Good luck to you and your son and don’t hesitate to contact me if you need to.
Sorry to hear this, but as the others have stated, it can be managed.
Pumps are the way to go. Check out the insulet Omnipod. No tubing and it can be worn swimming or bathing.
I’m not a diabetes expert, but I’m a sales rep for Novo Nordisk. Check out the website, there’s lot of great patient information and help for parents of kids with diabetes.
I have had type 1 for 45 years and have lead a good life. Some eye damage including surgery and hand (trigger fingers/carpal tunnel) but otherwise fine. Few things:
Yes on the pump, probably they will talk with you about this 6 months out.
He will probably go through a “honeymoon” phase, where insulin use may drop to near zero, excitement can build in the patient thinking it will go away, it doesn’t of course
Mental changes happened to me (socially) almost immediately, watch for this and address it if it does agressively.
I tried to avoid the stigma of being a “diabetic” (why is it that this is the only disease that is called in first person), vs person with diabetes. Looking back it wasn’t good for me in my teen years, avoidance wasn’t the right approach.
Exercise!!! 100,000 miles of biking are on these legs of mine that has kept me healthy.
Advancements are happening so fast. Years ago kidneys would certainly fail, simple use of ace inhibitors has avoided many problems. Will there be an ultimate cure, who knows, but many side effects will probably be reduced.
Don’t say “NO” to all sugar, especially if he is exercising. Balanced diet is what is important. Heavy fats can actually be more problem since they hit your system (and blood sugar) hours down the line.
Find a great diabetes education/doctor, probably his closest relationship will be with a nurse practioner in the coming months.
We had a sales meeting earlier this month and our keynote speaker was Jay Hewitt, a 14 time IM finisher who was diagnosed with Type 1 when he was in his early 20’s. His race resume is pretty impressive.
I became Type 1 Diabetic as an adult 7 years ago - before that I knew nothing about type 1.
My advice would be that you are in control of your treatment, the doctors can advise and recommend but they only see you for a few hours every 3 months, your son lives with it 24/7 and he/you need to control your treatment. Also everyone is different in terms of activity, food consumption, attitude, insulin resistance, etc and one rule does not fit all. Take advice, guidance, recommendations but do not surrender control.
Being diabetic does not stop you doing what you want, you just need to plan a little bit more.
His glucose level was 500 when he got there and it’s down around 160 last check. Everything else so far has come back normal and the AC1 test or whatever it’s called came back at 8.8 which they said was not bad, meaning that he’s not ahd this conditions for very long, which is a good thing.
Hardest thing so far is the whole shots thing and getting him used to it since he’s only seven.
The ward however is keeping him very busy as they have mobile, Wii’s, Xboxes and PS3’s. I’m not sure he’s going to want to come home, video games on one screen, cartoons on another and a bed that moves him around…can’t compete with that
Doctor says we may be able to go home tomorrow or have to stay as long as the day after Christmas.
When I was diagosed in 1966, I was in the hospital for 10 days. Began with a private room closest to the nurses station where they monitored an IV for 24 hours. Think I was in bad DKA looking back… Agree 8.8 A1C means he probably has only come down with it recently so good for you reacting quickly. In my case, it was one morning I walked downstairs and my ribs were sticking out, at age 9, went down to 57 lbs. Father saw me, I went to the pedi, then to the hospital in 3 hours. Then came learning to take shots using an orange. Back then they were harpoons compared to today. Also we only could do urine checks, BG monitoring was only during a doctors visit and they had to send blood to hospital lab.
I am sure first few weeks your nerves will be on edge, wondering what his blood sugar will be, probably weighing food etc. Listen to the educators, probably everyone in your household if possible.
I want to repeat, be aware few years down the road the mental aspects of what is happening to him.
I can share with you a couple of things as we had a recent diabetes scare in my family…you already know them but it is worth repeating when you are just trying to get a handle on things…
He is going to live a great life and have great parents to guide him.
It is going to be very difficult to explain everything as you are learning yourself and trying to get your emotions together.
Share what you are going through with your spouse, parents, friends, etc. And to some degree your child as he will have an understanding of the magnitude of this disease and how it affects everyone and everything in time (and eventually will become a secondary issue as you all learn and figure out how to do things best for your son). It is alright to shead a tear or two as this is a scary time (especially putting up a strong exterior for your child and family).
We are very fortunate to live in today’s medical environment–much better than 20 yrs ago when pumps/safer insulin did not exist. The lancets are honestly almost painless now but explaining that to a young child over and over is excruciating and hurts you more.
The glucometers have a error factor of +/-15 to 20. Just nice to be aware of.
Your Endocrinologist should be someone you like, you will follow up frequently and making sure your son is comfortable with him/her is important (if you have a choice in pediatric endocrinologists).
Your family is in my prayers as you go through this.
MJuric – I’m sorry your son will have to go through this. The good news is that diabetes is manageable and that he will still be able to do anything and everything that anyone else can do. I was diagnosed as a Type 2 just a few years ago and have been managing it through diet and exercise. Triathlon has helped me so much with this.
I don’t have any specific advice, although I will give you a suggestion for a book to read. “Not Dead Yet” by Phil Southerland. He is the founder of Team Type 1, a pro cycling team of Type 1 diabetics. I found this book to be very inspirational.
Looks like he will be getting out today, Yeah Merry Christmas!
Couple questions…of many, for those dealing with this.
First the schedule. Right now they have him on schedule of level check, and insulin 6 times a day. Tet before and shot after every meal and snack. I’m getting somewhat confusing/conflicting info from the docs as to whether this will be the permanent schedule or whether this is just the “Learning” phase. IIRC all the diabetics I know where only 3 times a day shots.
Second he’s having a REALLY hard time with the long term “Lancet” shot. Same needle same everything but apparently the shot itself stings a little more due to the volume of the injection and type? Can anyone give me any info on what’s going on here? Experience?
Third, ideas for distracting kids and making the whole injection thing less traumatic.
Fourth, a little sadistic maybe, but I’d really like to know how it all feels. Obviously I can’t inject myself with the insulin but does anyone make a kit or something that you can A) practice on yourself to get a feel for what is least painful/best and B) something that might simulate the actual injection feeling?
Fifth…holy moly this stuff is going to be expensive. Any hints here? Ways to cut down on cost long term? At the moment I have an HSA so I will now be nailing the deductible every year pretty quickly. First thing I will do is to look into other policies and see if the extra cost of the premium overrides paying the high HSA deductible. Obviously I’ll still have to cover the remaining fractional cost so lowering overall cost will be helpful no matter what I end up going with.
It is going to get easier with time so keep taking it slow and steady
I think you mean Lantus–a basal rate insulin that lasts throughout the day so one shot a day, not sure why it would hurt more than the short acting insulin. A lancet is the small needle to prick the finger.
Distract with a little ice, let him do it on you (maybe get injectable saline), you can get a dab of topical anesthetic (EMLA prescription) to help decease the pain but it has to be on for 30 mins prior
Did they give you the Juvenile Diabetes Research foundation backpack. Great book in there with info easy to read and understand…they have a website as well.
Checking glucose and dosing insulin is tough (absolutely sucks for you and your boy) but you have to see how his body reacts to the foods he is eating and how sensitive he is to the insulins as well.
Merry Christmas to you and your family! Your boy is lucky to have you by his side!
Lantus has an acidic ph ( 4) therefore stings (for some more than others) when injected. Levemir, the other long acting insulin available, has a ph of 7.4, neutral, so no sting.
From the online prescribing info:
Insulin glargine is a human insulin analog that has been designed to have low aqueous solubility at neutral pH. At pH 4, as in the LANTUS injection solution, insulin glargine is completely soluble. After injection into the subcutaneous tissue, the acidic solution is neutralized, leading to formation of microprecipitates from which small amounts of insulin glargine are slowly released, resulting in a relatively constant concentration/time profile over 24 hours with no pronounced peak. This profile allows once-daily dosing as a basal insulin.
LEVEMIR® is a clear, colorless, aqueous, neutral sterile solution. Each milliliter of
LEVEMIR® contains 100 U (14.2 mg/mL) insulin detemir, 65.4 mcg zinc, 2.06 mg
m-cresol, 16.0 mg glycerol, 1.80 mg phenol, 0.89 mg disodium phosphate dihydrate,
1.17 mg sodium chloride, and water for injection. Hydrochloric acid and/or sodium
hydroxide may be added to adjust pH. LEVEMIR® has a pH of approximately 7.4.
Is the Lantus you are using being injected straight out of the fridge still cold? If so, let it warm to room temp and then inject. Cold insulin does sting more than room temp. I’ve never noticed any stinging more or less with Lantus than any other insulin I’ve ever used. Also, is a different person injecting the Lantus than the person injecting the other insulin? If so, the stinging may be related to technique. Make sure not to pinch the skin fold too tight and also go in at an angle to avoid hitting any muscle which has more nerves than fat.
I think the first lantus shot was a bit of a bad experience. We had been used to only having 4-6 units, 8-12 clicks with the other pen. The lantus was 18, so took some time and there was a few stops out of concern of how many clicks there was.
I believe there is a bit more “Stinging” for him as well probably due to the PH difference as noted in the other post.
Got him home today, he was playing a video game, got his shirt off and gave it to him while he was playing…in out, no problem. I think keeping him distracted will be key until he gets used to it.
let him do it on you (maybe get injectable saline),
I asked the nurses about a kit or something like this but they all said hey didn’t know of any such thing. I was thinking that they would have the exact same “Demo pen” with a saline vile or something. You could use the same needles etc.
There was the mention of liability as the injection, although very low risk, carries some risk and danger…but if i could get a hold of something like that and have him inject me or watch me inject myself I think that would be VERY helpful.
I mean at some point he has to learn to inject himself. I’d rather he practice on me than himself. I’m pretty used to having shards of metal broken off in my flesh since I work with machines and metal chips all the time
