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13 Year Old Transitioning to Pump and Time at Home Alone

Discussion in 'Parents of Children with Type 1' started by wordsandmusic, Jan 14, 2015.

  1. wordsandmusic

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    My 13 year old son was diagnosed with Type 1 five months ago and his doctor is saying that we'll be able to transition to an insulin pump right about the time that the school year is ending. I have been wanting to get a part time job and the perfect opportunity just came up - it's part time during school hours and just the right distance from both home and school. I don't know if anything so perfect will come around again anytime soon. Granted, there are no guarantees that I would get the job, but if I did it would mean that my son would be at home alone with his 10 year old brother for about 5 hours each weekday. This on its own would make me nervous since he doesn't like to give his own shots (he's only done it a few times when he's absolutely had to) and would rather skip meals than deal with needles. But then you add in the fact that we're also planning on transitioning to an insulin pump around the time he goes on summer break and I have a hard time imagining how that will work, partly because I don't know what the first few weeks of dealing with a pump will be like and what kind of help and/or care he is going to need from me. My inclination is to just wait until after he is comfortable and able to deal with the pump on his own, before applying for a job.

    I would love to know what other parents have experienced in the first few weeks of helping their child adjust to an insulin pump. My husband works full time and we don't have any relatives who live nearby, so if my son needs help I'm the one who needs to be there.
     
  2. lmf1122

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    Why do you need to wait until the end of the school year to get a pump? If your son is interested in pumping, start researching now and order the pump sooner. You could probably get everything setup within the next month, before you would even start this potential job. The pump will make it so much easier for him to manage things on his own.

    Also, I would definitely recommend looking into a CGM. It gives me so much more peace of mind when I have to leave ODD at home alone.
     
  3. Sarah Maddie's Mom

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    I agree with the PP. Pump transition is really not so hard. :)
     
  4. wordsandmusic

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    The classes that we need to take in order for the doctor to approve us for the pump are only offered at certain times, and she said we would have to wait until after our next appointment to discuss it, which puts the transition at some point around the beginning of summer break.
     
  5. jenm999

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    Agree with others. Get a CGM right away - it should not take more than a few weeks start to finish if you have Dexcom's help - and hook it up to Nightscout so you can see his BG from afar and call/text if necessary (http://nightscout.info). Then fast track the pump. My son is 7 and can do his own boluses (with an adult looking on to make sure he enters the numbers correctly). We got the Dexcom three months after diagnosis and the pump six. We actually switched doctors because our CDE was going on maternity leave and wanted us to wait till she got back (and said the process would take another three months after that!).

    I get that they (docs, nurses, etc.) all want us to be proficient at MDI should our technology fail but I'm sure you have the hang of it by now. Technology gives you better "control" (I put that in quotes because really it's just mindful management to the best of your ability with varying results) and makes it possible for us to do things like have careers (gasp!) and allow others to participate in our kids' care. We are lucky to be living when (and in our case, where - Boston) we do. Go get that job!!!

    ***Edited to add that I know many here are happy and VERY well-controlled on MDI and that is certainly an option for the right family, but in many cases the technology can help.
     
  6. wordsandmusic

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    I'm glad to hear that! I am curious about if there will be a lot of extreme blood sugar numbers in the beginning as the new ratios are set, and then also if there will be a need for middle of the night blood tests. Currently we have to test in the middle of the night several times after changing his Lantus dose, and that has happened a few times. Those late nights of worrying about lows and trying to test by flashlight are exhausting. I have heard of the continual blood glucose monitors (which we would love to have), but then have also heard that they can be inconsistent.
     
  7. wordsandmusic

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    I wish we could get the pump sooner, but our doctor's office has a rule that you can't take the pump classes until after the six-month check-up, and then there are at least two educational classes to take and they are only offered at certain times.
     
  8. Sarah Maddie's Mom

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    I actually wouldn't agree with starting a pump and a cgm at the same time. Jmho but I think the "borg" factor is too great, and while CGM would make a pump start easier for the one doing the analysis, it could be overwhelming for the wearer.
     
  9. jenm999

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    Good point. We started the process for both at the same time but the pump start took longer so there were 2 months between starting CGM and starting pump. I cannot imagine programming the pump w/o CGM data, but many have! Also cannot imagine leaving my son alone w/o CGM, but he is much younger.
     
  10. Beach bum

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    The pump transition isn't all that hard, especially if you familiarize yourself with it by watching the online videos and making a cheatsheet. If you feel strongly about getting it, I'd tell the doctor that you want to be in the next class and don't want to wait until your next visit to discuss it. Get all your ducks in a row. Research and pick out pump so that you can have everything approved and ready to go by your next clinic visit.

    I also agree that it's not the best to start both devices at the same time. For example, if you are looking at the MM with CGM, you might want to stagger starts so as not to overwhelm your child our yourself. Think about it, that morning he had nothing stuck to his body. That night, he had 2 needles sticking him and staying on (in a manner of speaking). My daughter jokes at times she is a cyborg, but for some it would be a real feeling. But, if you are thinking you want to do the Dexcom as your CGM, you might want to get the ball rolling now and get up and running and then pump on the schedule your clinic is mentioning. This way, you can stagger it and get the benefit of CGM. We love the CGM because it gives my daughter a certain level of freedom she might not necessarily would have had without it. Add in using either Nightscout or Share to check-in from afar, it gives me comfort too.
    The biggest thing will be if your son is on board for all of this. At 13, he needs to be a willing participant.
     
  11. aprilodell

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    I totally get where you are coming from, my son will be 14 this April. Last summer he stayed home and watched our 11 year old, without any issues. He was diagnosed On xmas eve and initially I was nervous about him staying alone. He does a bs check now when he gets home from school and even if it is high he has a snack. My feeling is a little high is way better than a little low. I am nervous about him administering insulin on his own, but they have to learn some time to take care of themselves as we cannot always be with them right?

    In the hospital I talked with the endo team, who are also his endo team in his clinic and they said we could start talking pumps in a month, they actually almost put a dex on him to borrow at a 2 week appointment, but though he may be overwhelmed. He is already looking forward to them, so he does not have to go to the nurses office as much at school. Hoping on the 29th to start the process. I want to have mine on both before he and his dad go to the Bahamas in June for high adventure camping on a sailboat with the Boy Scouts.
     
  12. mom24grlz

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    we had the 6 month "rule" too at our endocrinologist office. Which wasn't a big deal for us, because Ashleigh didn't become interested in the pump until at least 4 months post diagnosis. So we spent those 2 months researching pumps. By the time her 6 month appt came up we knew which pump she wanted. Our office also (at the time we got her pump in 2010) didn't write a prescription for cgms unless you'd been diagnosed at least 12 months! Not sure if that's changed or not. We didn't get our CGM until 4 1/2 years post diagnoses, because we didn't feel the need for one until this year.
     
  13. wordsandmusic

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    I would love it if you would come back and share what his transition to the pump is like. My son's numbers have been so steady (occasional highs and lows, but easy to compensate for) and I've been wondering if that will hold true during the transition with the pump. I've heard that in the long-term it's a positive experience for people that gives them more control over BG and keeps their A1C at a good number. But then I've seen others write about how their numbers were all over the place and that they had a lot of extreme highs and lows as they tried to get the right dosages for the pump, and that it was extremely frustrating in the first few weeks.

    I guess we won't know until we try though. My son really wants to use the pump because he hates needles and injections with a passion. I remind him that the pump involves inserting a needle to get the tube into his body, and he replies that it's only once every three days. I think he assumes that we're always going to be there to do it for him. I think there's a bit of denial on his part about the necessity of him knowing how to fix it if it slips out. I'm really curious to see how he handles it because right now he will do anything to avoid poking himself with his insulin pen. Pricking his finger he can handle though.
     
  14. BarbDwyer

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    We don't use a pump so no experience there but my son is 13 too. In general your teen may step up and be pretty proactive in managing things on his own this summer. My 13yo was very willing to learn to manage on his own in exchange for some independence and autonomy.

    I work too (full time) so he has to be home without an adult. He was diagnosed at the beginning of last summer.
     
  15. coni

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    I would also educate your 10 year old regarding lows. Make sure he knows how to use the glucagon shot. You don't have to make it a big scary deal, but it's important he understand the issue.
     
  16. glko

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    My ds started on the pump 4 months post dx, his main motivator was that he HATED injections too, he still does. Since so soon after dx transition to the pump was very smooth and we continued to have great stable BGs. He loves the pump and would not go back to injections. If we do need to give an injection for a bad site or some other reason it is very hard for him.

    Regarding a 13yo staying at home alone I think it so depends on the child. I also have a 13yo non D daughter who as oldest child is uber responsible and "rule oriented". I do leave her home with her brothers during the day when my husband travels for work. She is very responsible and helps the D child count carbs and supervises his boluses and reminds him to test. If she was the D child I would absolutely leave her home alone for 5 hours per day. With cell phones and texting we can stay in close contact throughout the day. They text me before meals and snacks what the BG is, what he will be eating, and what insulin dose the pump proposes. If not sure about carbs they will text a photo of the meal and we will carb count from that.
     
  17. aprilodell

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    My son is uber responsible and a total rule follower. He gets annoyed that I text him all the time and since diagnosis I have to say to him is this BS stuff or just annoyed I am calling you. Going low scares him more than anything when we talked about it, I kind of went for the scared straight talk (I am a social worker) when we talked about not asking for help at school. I said if you do not ask for help early on, even if it is a false alarm and have a seizure at school, you could bite your tongue and pee your pants in front of your friends and classmates..not cool..so he has been going to the office to check without a problem. He also knows several kids at school who have pumps, which is a motivator to get one also. He has no problems with the checks or the shots.
     
  18. aprilodell

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    I will..going on the 29th and hoping to start looking. We have done on line research, but the team said they would pull them all out and my son could hold them and play with them and see which one he liked the best. We would love an integrated system, but water proof is also something we would like as it would be good for when he is camping in the Bahamas this summer. Would love to also have a CGM, I am thinking he will be good with the pump, but will have a harder time with the sensor, though less finger pricking would be good. He plays acoustic guitar and his fingers are already calloused from that.
     
  19. jenm999

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    I have a friend with a teen son who self-manages on MDI and she recently started using a meter called Telcare which sends all BG readings to the cloud. So she can open the app and see the last time he tested and what the result was. Might be a good compromise if/until you decide on Dexcom. https://www.telcare.com/
     
  20. BarbDwyer

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    I'm definitely going to check that out. Thank you so much!!
     

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