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[IP] Looking for Parents of Preschoolers on Pump (long, long, long, sorry)
I have a 4 year old son (Mark) who has been insulin dependent since he was 2 months old. He is currently taking 2 small shots a day of Humalog and Ultralente mixed to control his blood sugars (he gets a total of about 8 units combined each day) and we check his glucose at 3 - 4 times each day. Unfortunately, his blood sugars are not controlled very well on this regimen. Yesterday, for example, he woke up with a bs of 42, was 226 at lunch, and was 460 when we got home from preschool at 5:30. So, as you can see, his numbers are all over the place.
I have been trying, off and on, to get a doctor to let us try the pump. We are on our second doctor in this search, but I am not opposed to moving on to #3 if we feel like it is necessary in this quest. We have an appointment with the ped endo next week, so I am gearing up for my big 'Let us at least try it, PLEASE!!!' spiel to the doc again.
I have been a member of this list for over a year, and I have been doing my own research on using insulin pumps in children for a couple of years. I am very familiar with some of the other sites on the internet dealing with this issue, like KidsRPumping, Melissa's Diabetes Pages, etc. I have the information packet and videos from Minimed and Disetronic and I have read Pumping Insulin.
My husband seems to be resistant because he has a lot of questions, and he thinks things are going fine. Well, I do not think things are going fine. I know that it is Ok to have a high blood sugar for a short while, and that it takes 5 - 10 years for complications to develop from highs, etc. My opinion is that we have been running with high blood sugars for 4 years now, so that gives us anywhere from 1 - 6 years to start looking for specialists to deal with all of the complications that we are certainly moving toward. I don't want to look for a kidney specialist, I want to get this kid's number more in line and not have to worry so much about the complications!! I want him to wake up with a glucose reading closer to 100 than 42! I want him to be able to sleep past 8 am on the weekend (which means that I can sleep past 8 too!)! I want him to be able to eat a cupcake at preschool without having to scrape the damn frosting off!
My dilemma is that I still do not have all of the answers I need. My husband's concern is that we would not be able to get the preschool teachers to calculate carbs correctly and bolus appropriately for what was eaten. I work right across the street from the preschool, so I said that if I had to I would go over there every day at lunch and do the calc and bolus for him, if needed. I was also trying to explain to my husband that if we did try the pump, we could even set up different basal rates for him during the day, so it would mimic what is happening now with the Humalog and Ultralente we are using in MDI. We could have a low basal rate (even set it to 0.0) for the times that he is not eating and have a higher basal rate for the times when the Ultralente is now kicking in during the post-lunch period. That way, the teachers would not need to do any bolusing, unless there was something really out of whack, and then we could program the pump to have a maximum bolus amount!
so even if they did bolus incorrectly, the most he would get would be a 0.5 unit bolus (or whatever was an appropriate maximum to set up in the program).
The preschool staff has been great about working with us to care for Mark's diabetes. One of the teachers in the preschool is a diabetic and I think she is on the pump also, so I feel like we have someone there who understands what is going on and who knows what to do if things go wrong. They check his glucose before he eats lunch. I'm sure that I could talk them into doing it before the afternoon snack also, if we needed it.
Anyway, other questions I have are:
Will he (or one of his playmates) be able to pull the catheter out when they are playing? Mark is a very active child. He spends most of his playground time running around, riding bikes, and rolling around in the sand (at least I think that is how he comes home every evening completely covered in sand!).
Will all of the sand cause a problem with the pump? There must be a case out there that the pump can be placed in to protect it from stuff like that.
Will we have a problem with other kids (or Mark) messing with the buttons and accidently giving a bolus? I thought that I read that one of the newer pumps has a security code that you can use to prevent accidental or unauthorized usage. And, I'm certain that someone has to have come up with a case especially for kids to keep out the dirt and stuff and prevent others from getting to the buttons. I guess with the new remote-controlled pumps, you could have a case that was completely inaccessible to a preschooler and just use the remote for all of the boluses (of course, the remote would have to be stored with a responsible adult so no one else could get it and give a bolus when they thought they were trying to change the tv channel).
I guess what I am looking for is some other parents of preschoolers who have been successful in using the pump and who also have their child enrolled in preschool all day. I know that we could do this easily if Mark was home with one of us every day, but I like my nice house, having good health insurance, and being able to go on fun vacations, so I don't think I either one of us are going to be able to quit our jobs to do this. And, it took me a long time to get this job working at one of the very best places in the USA so I ain't leavin!
Sorry about the extreme length on this one. I guess it is just part of my overly-involved personality, like when the Pediatric ICU doctor told me that I was 'Too involved' with my 1 month old son's care because I was there and wanted to know what was going on each and every day!
Thanks for listening, and I look forward to hearing some from some of the preschooler pumper parents out there!
Mom to Mark (4 years old, dx at 2 months old after pacreatectomy to correct hyperinsulinism - another long story!)
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