(I don't mean to sound like I regret moving to the pump — Eric's A1c numbers are vastly improved and it was worth the difficulties we had to switch over. But they make it seem really easy in the marketing materials, when it is not generally quite as easy as it sounds.)
I appreciate your feedback. I know I can easily take a week of PTO off and I will do that. I can take FMLA time off - of course that's not paid but it is a possibility. I can also work from home whenever I need to. Do you have suggestions on things to read before we get started?
"Pumping Insulin" by John Walsh is required reading; my son's transition might have been a little easier if I'd found the book BEFORE we made it :\
My own book "100 Q&A About Your Child's Type 1 Diabetes" includes a summary of some of the new & different stuff you may encounter — I was writing it at the time we made the transition, so you get some of the gory as-they-happened details of the obstacles I encountered — I would probably write different things if I wrote it now, 4 years after the fact. It does not go into the how-to's of pumping because that wasn't the purpose of the book, but it may at least give you an idea of what you may expect.
Beyond that, there are groups on this site that discuss use of specific types of pumps, and I would advise you get to know the folks who participate because they undoubtedly know the quirks & the ins/outs of the specific device. Also, do a YouTube search on "insulin pump" and find all sorts of helpful videos about how to insert sites, fill reservoirs (there is a video on how to prevent bubbles in the reservoir that was a GODSEND to me) and manage living with a pump in general.
Hi Ibkies, I personally don't think it is necessary to take FMLA time. A week of PTO sounds like plenty. My recommendation is to start off with a comprehensive pump class and training. Which pump are you going with? All the pump companies should have a trainer and hopefully you also have a CDE to consult as well. We had very little training and as a result my daughter's A1C has not improved on the pump - she is still on a roller coaster, but we have switched doctors and CDEs and are now on the right path. We will be doing a basal rate test this weekend to find out if her new basal rates are correct. We were never asked to do that before, but it makes perfect sense. Basal rates are the foundation of your child's pump therapy and if they're not right, everything else will be off as well.
Our new endo recommends the book "Smart Pumping." It's 11 years old but is still totally applicable. I have other books as well (Pumping Insulin, Think Like a Pancreas), but Smart Pumping is a very easy read and highly enlightening. Our new practice follows it pretty much to a tee. There is also a Pink Panther book about pumping and CGM you might find helpful - can probably get it from your endo's office. Good luck - let us know how it goes!
IMO You need two weeks of focus on the pump. So maybe one week of PTO and one week of going to work, but doing nothing else. It really took us two weeks to work out the kinks, but my son was 18 months when we went on the pump and I got no feedback. Probably shorter with an older kid.
When we decided to change over to the pump on our 6yr old son last year in August. We thought it was going to be an easy adjustment and easier overall, compared to giving two shots a day with a Long/short acting insulin mixture. The 3 biggest changes we had to deal with was counting carbs. We had always counted carbs but it was more of an estimating system, now it needed to be very precise. The more accurate the carb count, the better your pump works. Second was the complete 180 at looking at diabetes between insulin shots and pumping. Where before we were feeding the insulin throughout the day, to being able to eat when our child wanted and giving a bolus for the food. We would slip back into the habit of having a snack when he wasn't hungry or making sure he would get enough starchy carbs and protein in every meal. Where he really didn't need that with the pump. Looking back at injections and seeing exactly how the pump works with your imput, I know now that I could regulate his BG much better if we were to switch back one day. I would have much tighter control. 3rd issue is the overall handling of the pump that is required. If you are dealing with a smaller child, who is not ready to work the pump on their own. Then be ready to be hands on at all times. 2 hour testing throughout the day and night. Can last for weeks even months, until you get a basal rate set down that works. But as the kids grow, exercise, sleep, hell even breath, it will change right when you think you have it figured all out. You will constantly be changing, tweaking, calling to figure out what went wrong? "It was fine last week, we had GREAT numbers. This week we are all over the place." That is diabetes....
Lastly, if you have a small child. Be ready for it to be traumatizing for them. Ourselves and friends of ours all had experiences where the kids had a bad experience at the beginning and therefor hated each and every pump site change from then on. We are 9 months into it and our son is just now starting to not mind a pump site change. Other kids still freak out and need to be held down to do so. If they don't like needles and the shots, they will still not like the site changes. I don't blame them... I would do anything to take away this from them.
Good luck! Either with MDI or pumping, they all have Pro's and Con's... nothing is perfect and each child is different, with different needs.
My T1 daughter is now eight. She was diagnosed at four and within two months was on the pump. I LOVE IT!!!! We did the medtronic minimed because it seemed right for us. She took right to it. She still hates site changes but hates the amount of shots she had to take even more. Sure there are good and bad things (when the sight isn't working and she wakes up at 400 and starts throwing up hello hospital) There are fluxuations(sp?) even with the shots. Normally we try to get our carbs exact but if we are out and we are not completely sure we estimate (usually under) and then test in about 2 1/2 to 3 hours and if needed give an extra bolus if she is high. I loved the fact that there was no more calculating the insulin to carb ratio etc. I stink at math and it was easier for her preschool and now elementary school. I was already on FMLA when she got her pump so I was learning and then showing her preschool what I had just learned. It was a little crazy for a few weeks but once we all got it down it was a god send. She can show anyone how to work it herself and is VERY independant and I think that helps her as well. With the shots I don't think that would've happened so soon.
Help! My 12 year old daughter was diagnosed with T1 8-20-12. She has now turned 13 and is a hormonal mess! We are deciding on getting a pump soon. She goes for the first time to camp Kudzu Sunday. I want her to meet other kids with T1. We have no friends that are dealing with this too. I really like the medtronic pump she likes the accu-check system. Does anyone have and advice on how to make this 4 year commitment? All this has been overwhelming. My husband was a T1 but drank and smoked and died 8 years ago. I so did not want this for my children. I am trying to be brave for her and put all the horribale things that happened with my husband out of mind but its hard. Especially dealing with her being so withdrawn. Its hard to know what is "normal" teen behavior or dealing with diabetes. Sorry for venting! Just reallyn eed help on deciding on a pump. Thanks!
@LaNessia
First off, Vent Away!!!
My daughter was diagnosed 12 years ago when she was 8. Diabetes Camp was so helpful in more ways than you can imagine! Sam met friends from all over the state that she is still very close with. When D is getting her down, she has friends that know exactly how she feels, which is something that I could never give her. She may come home from camp and tell you exactly which pump she wants or even that she doesn’t want one at all. That said, Sam had a pump for 6 years & is back on MDI with pens. Lantus twice daily and Novolog for meals & bolus. She went back to shots while she was in high school. It was her choice and I supported that 100%. Teenage years, especially when dealing with a life changing diagnosis like this can be ridiculously stressful. Hormones? I can tell the difference between PMS & high BG with Sam and call her on it, but it took awhile to figure it out. All kids are different, but we found giving Sam “ownership” of her Diabetes to be very helpful. This is not to say that she made her own decisions without us… instead we worked together as a team. She participated in her school 504 & IEP meetings since she was in 7th grade. She was present with me every year while I gave a “Diabetes 101” class to her teachers. She learned to advocate for herself and others. She chose to do a scene from “Steel Magnolias” for her directing class final to raise awareness. When she aged out of D camp, she worked as a counselor so she could give back and help other kids like her.
I’m sorry about your husband. It must make you really fear for your daughter. It scares me too. Sam’s not just my daughter, she’s my best friend, and I would be lost without her. It will be so much better for your daughter when she has other friends that are like her. Encourage her to exchange phone numbers and Facebook info with the kids at camp. Most camps have vendors on pickup day with great info on the latest Diabetes technology & some pretty cool free gear, too. While she’s at camp, RELAX!!! She will be safe. You can breathe and take a much needed respit. Camp was the only time I actually relaxed Sam was away from me when she was younger.
~Renee
Renee
Thank you for your support! I am looking foward to the week off from the big D! My youngest daughter is excited to get her mom back and not have everything revolving around her sister these last 7 months. I hope that Riley will get everything out of camp that it has to offer her and that maybe she will come back more open and positive. Thanks again!
La Nessia
That would be do great!! Her name is Riley. She is 13 and in cabin 8. It was so amazing today dropping her off. Everyone was fabulous. They made us feel so welcomed and special. I don’t know if you can get word to him but that would be amazing. I just want her to have s good time and learn she is not alone. Thanks so much.
Hi I’m new here.on June 6th my 8 yo Autustic son was taken by ambulance to Children’s hospital. He had been not feeling well, but bc if his Autism he has a very hard time expressing his feelings. On arrival his blood sugar was 723. He was in PICU in DKA. He came home the 11th. This is a whirlwind for the whole family. I have three others with Autism and an adopted daughter with an Untelkectual dusability with two kids we are helping to raise. Life seemed impossible before, but now? The doctor is having us check his sugars every 3 hrs thru the night for now bc he has a strep infection. I just wanted to introduce myself.
Overwhelmed Mama,
Laura
Hi Laura... Wow, I did not realize your son's diagnosis was so recent. You MUST be feeling pretty overwhelmed, for sure! Trust me when I say that we've all felt that way and it WILL get better. I encourage you to talk with the other parents here — I see you've already found the group for parents of children with autism, and that's even better, because there's a wealth of experience that will really be a Godsend in helping you to get your feet under you. We all know how hard it is at first... And we're here to help.
I found TuDiabetes within a few weeks of Eric's diagnosis when he was just 18 months old. I would have lost my mind without these people here. So *hugs* to you, and don't hesitate to ask questions.
I’m crying with joy over your kindness!
Aw, now you've got ME crying. Wipe your tears, Laura, we've all been there — it's a "pay it forward" kinda thing.
Hello everyone I am new here and my 3yr old son, Collin, was diagnosed with T1D in Sept '12 when he was 2yrs old. He just recieved the medtronic 523 pump the beginning of July'13, and uses the silhouette infusion set. But I find it hard to use the inserter and it frightens Collin. He was a preemie @ 26wks and only weighs 28lbs now. Any suggestions on infusion sets/inserters that maybe easier?
Don't miss today's live videochat with author and blogger Scott Bonner, parent of a T1 child -- it promises to be outstanding!
http://www.tudiabetes.org/events/live-interview-with-scott-benner-of-arden-s-day
If you've never watched a live event here, see this for instructions:
http://www.tudiabetes.org/notes/How_to_Watch_a_Live_Event_on_TuDiabetes
Hi Tracy! Welcome to TuDiabetes.
Eric was on the Silhouette when we started the pump almost 4 years ago when Eric was 2. I have always put the set in by hand — I found the inserter put them in too deep because Eric also is very thin with little body fat, and the angle has to be very shallow to get it in right. See if you can't get some Mio sets as samples from Medtronic — they go in straight and not very deep. They can be tricky at first to insert, but you get the hang of it (and if you put down a piece of tape first, I find the site sticks better). We didn't stay with the Mios because Eric does a lot of swimming and I found that the Mios fall out easier than Silhouettes when exposed to a lot of water.