Hi,
I am new to this site and have a question. First a little background. My 14 year old son was diagnosed over a month ago. He went into DKA and we took him to emergency not knowing what was happening. He stayed in the hospital for three days while they got him stable again and as he puts it, “It is really weird. I wake up in a hospital and now have to give myself shots four times a day. Just weird.” It has been a whirlwind of education for us and he has been unbelievably mature through everything. He started giving himself the shots within the first week and is already counting carbs and taking charge of this diagnosis. He has always been a bit more mature than the average kid but he has impressed me by his willingness not only to take care of himself but to learn and accept this situation. And yes, I realize that can change at any given time, I mean, he is still a teenager, but for now he is doing great and I’ll just take it as it comes. Now on to my question…
We have a team of people helping us. Endo, dietician, etc. We are already trying to get the Dexcom because they are very into that CGM and think it is super useful. But when I mentioned a pump and wanting to get one before the end of the year there was push back. I got “You need to learn to walk before you can run.” Ok, I get that a pump is very different from injections but in my mind wouldn’t it be better to have him get one sooner rather than later? He is interested in trying one and I believe he would do great with it. I was told that we have to “work the program” and that “it is a lot more complicated to have a pump.” Well, I know there has to be other teens out there using them, whether they were just diagnosed or have had T1D for years. So, I guess I would like to know, when did others get pumps and what led you to want one? Also, is only a couple of months having T1D too soon to get a pump? I’m just confused as to why they would push back like that. (Side note: he is keeping his checks within range about 85-90% of the time. I realize this is most likely due to the honeymoon period but he is doing an excellent job with it thus far)
Hi Danielle @dannien, first as a brand new member her I offer you A Warm Welcome to TypeOneNation!
Now to give a direct answer to your question, I took shots for 47 years before moving to my first pump. Of course I rejected suggestions that I begin pumping for many years - the first pumps were the size of medium sized backpacks. Your son sounds as if he is certainly getting it together that he must take responsibility and learn to take care of himself - yes, diabetes will be with him for his entire life. A pump isn’t a necessity for “good diabetes management”, I had good management for 15 years before moving to a pump, but it can be a tremendous help but it can also cause many problems - I really endorse his care team’s
A pump alone will not keep him free of DKA experiences, but his knowledge of his own body and how it [his body] reacts to activity, food and insulin will - I have not had DKA episode since 1957 The DexCom monitor if he uses it properly is a great asset - I recently began using the G5 and the “Clarity” report data is awesome.
Stay in touch, and most especially encourage your son to live a full, active and productive life and to not use diabetes as a crutch or as an excuse for not doing something.
learn to walk before run is trite and if someone actually said that to me I’d… well… I’d softly suggest that sticking to the facts vastly improves communication efficiency. <- (no I wouldn’t!)
yes there are counterpoints to a pump and everything @Dennis said needs consideration as well.
You can learn to drive and fly at the same time, Period. People who need to can learn huge amounts of wildly varying things. All I will add is that mastery, true understanding and finesse takes 10,000 hours of practice.
In my opinion a good reference is “Pumping Insulin”. it’s a good book/ guide to all things pumps and is not brand based.
I used MDI for 27 years, then switched to pumping because it was time and my decision - but you can start pumping tomorrow if you want.
For me, multiple daily injections using slow and rapid acting insulin’s were very difficult to manage. I got my first pump in 2001, and I would never voluntarily go back. Sure there is a learning curve with a pump, but not that bad. If I was starting my T1 life today, I would start out on Tandem t:slim and Dexcom G6. At this point, they look like the best representation of where technology is headed.
I keep trying to remind him to listen to his body. He has said a couple of times that he doesn’t feel right and went to check. It seems he is pretty sensitive to lows. I’m talking like when he gets to 80 or below he feels it.
And thank you for reminding me to encourage him. Sometimes, as a parent, you get into so much of a routine that you forget to just say what a great job they are doing and remind him that diabetes isn’t all of who he is.
hi @Amohni, it’s really common to have “hypoglycemic awareness” when your blood sugar starts to drop. Your body will release stress hormones and there are all kinds of symptoms. This is a good thing actually because, for example, you want to wake up if this happens at night.
your body also gets used to whatever is happening the most. if your blood sugar was very high recently (this happens when people are first diagnosed) then when it drops to normal you may feel it like a low. this can change over time. keeping your blood sugar near your target and you will eventually feel ok at 120 and low at 70, which is right where you want to be. good luck and welcome to Type One Nation.
I got a pump guests after my diagnosis. My type one is not well controlled with a pump and no CGM. My choice for right control is either the pump and CGM or long term and short term or acting insulin. The pump has been a nightmare and Medtronic in my opinion is a for profit money machine that our diagnosis keeps running. Their customer service is for the most part subpar or ill equipped. I’ve had two pump failures in last two months . I’m waiting for my new CGM currently. My last diabetes educator failed to inform me CGM should be changed about every year , that they should be washed and a plethora of other essential pertinent information. I advise a CGM with MDIs or a CGM and pump. Everyone’s diagnosis is different. When you’re an adult who works more than full time and commutes two hours a day as well as volunteers and is seeking to re establish her career there’s a need to manage diabetes but not a lot of free time. Best of luck!
Hello Danielle,
My son, 12 at the time, had a very similar situation. DKA, 3 days in PICU… we talked to our Endo and were told basically the same thing about the pump. We pushed our Endo to get us a pump ASAP based on our insurance (we had hit our max spend and wanted to get the pump before the new insurance year started and we would have to pay for it out of pocket). Our son demonstrated maturity and the ability to handle his BS. It took some pushing on our end however we ended up getting a pump 3 months after diagnosis and never looked back.
You know your child better than any doctor. Keep pushing/fighting for him and know that you can handle this!
Welcome to the diabetes family!
Mike
@FUT1GB Thank you so much for sharing. This is exactly what we are going through! You can bet I’m going to keep pushing/fighting and doing whatever else I have to do to get these doctors to listen. I’m thinking about just submitting something with Tandem to get the ball rolling but I’m also afraid that his endo will be mad at me for submitting it. But I also really need for it to already be in the pipeline because we all know how slow insurance and medical supply companies can be.
Our daughter is 11 and she was just diagnosed this Januarary. In June she went on the G6 and we are now working toward the pump. She will get the pump inserted Nov. 5th. It is a process to get the pump. We had to go thru 2 self management classes a pump screening and then we had to meet with the 3 pump reps. She had to wear 2 different pumps for 3 days. Now we have to meet with the rep of pump we chose and go thru training. Then we have pre pump training then pump insertion on the 5th. It is very overwhelming. We love the G6 and being able to see her blood sugars all the time.
I think the most important reason to wait (id you decide to wait) is that so you will have a really understanding of how to switch back to injections should the pump fail. My 14 year old daughter was diagnosed at age 7. We got her a pump around 10. We started on omnipod and recently switched to Tslim. Both of these (and I’m fairly sure every other brand) fail every now and then and sometimes in situations where you have to put off replacing for many hours or even days. Our other issue is that the pump sites chew up her skin MUCH worse than the injections or the dexcom. Sometimes we switch back to injections just to give her time to heal .You just want to be VERY sure that if the pump is suddenly unavailable to you, that you remember how to handle boluses and basal without it. That said, I use an app called RapidCalc to mimic the calculations the pump provides for me, whenever we’re having a pump vacation. I seem not to worry as much about the risk of having a broken phone as I worry about having a broken pump
Hi Danielle @dannien!
Welcome to the world of Type 1 diabetes!! I have had t1 for over 55 years ~ UGH!!
I resisted getting the pump for years, and as others have said, would never go without it!! I somewhat agree with your ‘team’, to wait a while. When I was a teenager my diabetes (and my numbers) rarely made sense, due to changing hormones.
Reason 1 to wait a bit. All of those hormones!!!
Reason 2 ~ type 1 diabetes is tough one control, even while on the pump.
I randomly have days that I look at my blood sugars and wonder “what the heck?”
Hang in there, waiting a bit won’t hurt him.
And for me, I didn’t do very much research on my pump (I am on the Medtronic mini- med…a bit dated, however, it works for me.)
I HATE to wear the CGM too…so encourage him to do as much research as he can, talking to others about their likes/dislikes, etc.
Blessings to you and your family as you navigate through this!!!
My son was diagnosed at 15 years old (about 2 years ago). He is now on a pump first using shots for about a year. He has had the Dexcom G5 since shortly after he was diagnosed. The CGM has its own learning curve. It was not what I envisioned; I thought the data on the CGM would always be on point with a finger prick. It doesn’t work that way, now that we know how things work it is an invaluable tool especially at night but it took a month or more to understand it isn’t perfect! I think I would have been overwhelmed trying to dial in the CGM and the pump all at once.
As far as the pump goes, I am so happy we made the switch but have said to others how much we learned about this disease, how insulin works, how my son reacts to certain foods and were able to really fine tune things during the first year or so while doing shots. The pump is much more complicated than I thought and because you are no longer on a long lasting insulin you are at a higher risk of going into DKA should the pump have an issue and you don’t become aware or treat properly.
I guess what I am trying to say is your team of doctors sounds like they want to make sure you have good control before approving the switch, not a bad thing. That said, I get wanting to move to the pump. My son felt like he got his independence back and has been really quite responsible. Our process took a long time with all the classes and education so factor in that time too. It took about three months for us to go through insurance, classes and our first insertion. We had to spend an entire day in the hospital the first day to insure there were no issues (breakfast, lunch and dinner).
I wish you the best. You’ll get there! All the technology is amazing, now I just want a cure!
I’m 20 and I was diagnosed back at the end of January. For me I started on the dexcom g6 at the end of july and the omnipod pump in september. The CGM is invaluable in what its helped me learn about my body. For me the pump has also been a huuuge help in reducing lows, as well as keeping my sugars in range more often. I think it really depends on the individual and how quickly they adapt and learn
For what it’s worth… I started with injections. I fought against the pump because I was managing so well. When finally convinced to try a pump, I would never go back! And I wish I started sooner. I thought I could manage so well with needles but : I had way more lows on needles and more control on the pump. I hated sticking myself 4+ times a day. Once every 3-4 days is way better! I can look at my pump and dose in public. With needles I felt shunned and sent to the dirty disgusting bathroom to dose. With a pump I can dose whenever I am hungry or have had a snack. With needles I might end up sticking myself 6 times a day to accommodate for snacks or dessert. I would never go back to needles.
And as far as Medtronic is concerned. I have had only excellent support in every way! Trainers, problems, just stupid questions, everything has been awesome with them. Knock on wood, I’ve not ever had a problem with my pump and my CGM is always spot on (+- 10).
Good luck! Do what is best for you and your family.
Leon -
My response is a bit long but I was having some difficulty in replying as I am reluctant to provide too much advice as this should be the role of the Endo. and educators. I am also a Type One who began my journey as a 15 year old in 1946 - 72 years ago. When I began there were no glucose monitors, no pens or pumps, no CGMs, no education, not much experience in the medical field, and no research or funding for research going on - so you have an excellent diabetes environment today for your son to live a good and long life as long as he keeps that good frame of mind and does take care of himself.
Today, I use a Medtronic 630g insulin pump with a Dexcom G5 CGM. I am hoping one day to have a Medtronic 670g which is a more advanced pump coupled with a CGM, but Medicare has to approve use of this instrument first. I understand the Dexcom G6 CGM is an excellent instrument and more accurate too than the G5. Your step in the right direction as far as a pump is concerned should come from your Endo.
I was a teenager when I became Type One so I do know some of the problems that your son may have in the years ahead but sounds like he is off to a good start. I am a JDRF Advocate and I have come in contact with a number of diabetic teenagers and one of the most recent started using a pump at an early age and found it to be a problem when athletics are involved and started using an Insulin Pen until growing older - it seemed the pumps with tubing were the big problem and also athletics was a source of damaging the pump in some way. Have heard of others using an Omnipod which does not use tubing to be acceptable. Again, your Endo and educators are the best source of good information and help to you and your son.
I have a daughter today who began use of a pump in her adult years and was on syringes and pens for many years - today with no complications. With the research that is going on today, I do believe that you and your son will see the day that Type One will become “Type None.”
