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spurry posted on Wed, May 20 2009 7:17 PM

My 10 year old son was just diagnosed with type 1 and has admitted in moderate DKA. home now on injections, and being seen at local pedi endocrine clinic.

They have never brought up the subject of an insulin pump. Why? It seems so much easier!  Also, he is a swimmer and I don't know how that would work with a pump.

Lastly, we live within about an hour of joslin. Is it really that superior to other places? we've had classes, and things seem ok.

Look forward to replys. thanks!

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Spirit replied on Wed, May 20 2009 8:01 PM

I do not have a Type I child, so take this with a grain of salt.

The children I know of who are T1 went on insulin injections for some time to stabilize their insulin needs and learn the other things you need to know about keeping blood glucose levels on an even keel (namely how food intake and exercise and stress and even growth spurts affect their numbers on a frequent basis and how to deal with it).  Getting the carbohydrate reactions can take some time alone and may present some surprises. 

Plus, there is a whole adjustment period your son will have to go through.  It sounds like he may be making an excellent intitial grasp, but there still may be some bumps down the road (friends' reactions, what happens when he can't eat the same [often crappy] foods his friends are wolfing down, how he feels when he experiences a low and how will he deal with it, how does he react to extra attention by school personnel).

There are more and more diabetic kids, so he should not feel alone in dealing with this.

Anyway, about the pump:  Most children I know worked through a lot of these issues before they went on the pump.  Using the pump itself brings on a whole new learning curve and it is perhaps best if the basics of diabetes care are mastered  before they are complicated by pump issues.  Even kids on the pump experience lows and highs and need to test and adjust.  Too much information at once may be just that...TOO much information to adjust to too soon. 

In any case, that is the experience of other parents I have known with a T1 child.

Joslin is an excellent resource center and pretty much on the cutting edge of diabetes care.  If things seem okay with what you have gotten locally, there may not be much point in changing.  But it is good to know about the Joslin expertise if you feel the need to delve into services more intensely later on.  If I were in your shoes, I'd take a "wait and see" approach to this. 

I would also recommend that you search out the parents of diabetics message boards.  The support you can get from those who are walking a mile in your moccasins can be a lifesaver!

Spirit

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BarbaraD replied on Thu, May 21 2009 7:27 AM

Hi Spurry:

I am not a parent of a type 1, but I am a type 1 and my brother was diagnosed as a type 1 as a teen.  I would strongly recommend Joslin - they are the experts and you are only 1 hour away from them. When I found out I was a diabetic 8 years ago, I insisted on getting a referral to Joslin and I'd never go anyplace else. 

I also strongly recommend a pump - they are definitely the way to go!!! My friend is a school nurse and she says all the kids are on pumps.  My neice is on a swim team and one of her team mates is on a pump.  Some of the pumps are waterproof, but your diabetes team will work with you and your son to find a pump that fits his needs.

Good luck and keep us posted!

Barbara

Dx 2/01, pumping with Cozmo, Celiac, dx 8/05

 

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zrebiec replied on Thu, May 21 2009 9:01 AM

Most likely the local pediatric endocrine clinic has not brought-up the idea of an insulin pump because the diagnosis of diabetes is new and most clinicians are not going to broach that subject until you have your feet solidly on the ground with diabetes management.

Is the Joslin Pediatric Clinic superior to other places? I think so but it is not an unbiased answer since I work closely with this experienced, caring and competent pediatric team.

John Zrebiec, MSW, CDE

Joslin Moderator

 

 

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spurry replied on Thu, May 21 2009 11:01 AM

great info and thank you. so we should wait until we break out the insulin pump discussion?

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zrebiec replied on Thu, May 21 2009 12:12 PM

There is not a simple answer. When someone is ready for an insulin pump depends upon many factors: age, developmental level, intelligence, maturity, body image, family support, knowledge about diabetes, motivation, and comfort with technology, just to mention a few issues. This involves a discussion between your family and your pediatric team. You can alert the team to your interest so that it becomes part of the treatment planning process.

John Zrebiec, MSW, CDE
Joslin Moderator

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spurry replied on Thu, May 21 2009 1:16 PM

so more questions. my son is adapting well, does his own sugars already and is compliant.  He's a good boy, A student, and never  a behavioral problem.  He had an interest in nutrition even before this. For his birthday (pre diabetes days) he asked and received an age appropriate book about nutrition.  He is 10 though.  I'm a physician and my wife is a psychologist. 

Do kids like him, in our situation, go more for the pump or needles?

 

thanks. We have no one to talk to and this is helpful.

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Ron AKA replied on Thu, May 21 2009 2:46 PM

spurry:

so more questions. my son is adapting well, does his own sugars already and is compliant.  He's a good boy, A student, and never  a behavioral problem.  He had an interest in nutrition even before this. For his birthday (pre diabetes days) he asked and received an age appropriate book about nutrition.  He is 10 though.  I'm a physician and my wife is a psychologist.  Do kids like him, in our situation, go more for the pump or needles? thanks. We have no one to talk to and this is helpful.

Sure sounds like a good candidate for a pump to me.

Ron

Not a med prof. Just diabetic type 2 on Prandin, Levemir, ramipril, bisoprolol, & Crestor. Diag. Feb/01.

"I have not failed. I have just found 10,000 ways that don't work." - Thomas Edison

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Spirit replied on Thu, May 21 2009 4:57 PM

Since he already has an interest in nutrition (and this puts him WAY ahead of the curve) and sounds like a mature kid, how about having him do some of the research on pump vs. injections so that he can participate in an informed way in the discussions leading up to this decision?  Whether more kids opt for one over the other (and I suspect that the pump will win out), he is the one who has to be comfortable with both the choice and the timing. 

As for questions, ask away!  I have found these kinds of forums to be great for this.

Spirit

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BarbaraD replied on Fri, May 22 2009 7:40 AM

My pump educator told me that kids catch on very quickly to the technology of the pump.  Nutrition is a huge part of managing diabetes with or without a pump, but having done it both ways I highly recommend pumping!  My friend the school nurse says almost all the kids have pumps and they are the way to go.

Barbara

Dx 2/01, pumping with Cozmo, Celiac, dx 8/05

 

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 In our lives, we suffer a lot.. We walk through on several trials, that causes us to give up. Sometimes we think life is so unfair because of the hindrance we've been through. We struggle a lot to survive, but when things went wrong and everything is gone, we find someone to blame on and ask "why me?"..But things are just not constant, things may come and go, if not today, tommorrow, or never. But we need to value things that comes along our way, looking back the past may serve as our guidance to a new and better path forward..

“Every problem has a gift inside. We seek problems because we want their gifts.”

 

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Spirit replied on Wed, May 27 2009 10:51 AM

"Every oroblem has a gift inside."

Thanks for that thought.

Spirit

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spurry replied on Thu, Jun 4 2009 6:42 PM

so now we are being told that our son cannot have a pump until his bs stabilize in about 5 months.  His insulin requirments have been dropping so he is in flux.  I'd like him to get a pump in august before school. thoughts? thanks!

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Spirit replied on Thu, Jun 4 2009 7:30 PM

Again, to remind you, I am not the parent of a Type I.

BUT, diabetes can be an ever-changing disease, no matter what type you are.  It seems to be the nature of the beast and that can present some challenges.  Many, many things can impact our glucose control.  Food, exercise, stress, physical illness, hormonal changes (A BIG one for pre-pubescent boys!), changes in sleep patterns, changes in TIMING of exercise or food, even sleeping in later on weekends can mean a difference in blood glucose values.  DO NOT discount any of these...all will rear their heads at some time or other. 

To require a 5 month period of stabilization before introducing a new treatment (a pump) seems like good, clinical judgement to me.  It appears that your son's medical team is trying to establish a clear baseline so that a major change (and a pump is, indeed, a major change in treatment, make no mistake about that) can be clearly tracked for the efficaciousness of treatment.

But I do also understand your frustration with not getting something in place at the beginning of the school year.  My daughter is now married and in law school so I don't have the same connotation to the beginning of the school year as a "new, vastly significant beginning" that I used to.  But I remember!

It would be nice to start all afresh.  New academic year ~ new pump. 

But these two things, while linked in your mind, may not be things that would work well for your son in tandem.  From my friends' experience in having their children learn the ins and outs of pump technology, the learning curve can be steeper than it first seems.  Perhaps it would ultimately be easier for him to adjust to a new school year (and it's the middle school years he is entering, is it not? Those can be tricky!) and then later adjust to a new diabetes regime. 

Just a thought.

Also, no matter which way it goes, I do hope that your family works closely in harmony with the school nurse.  That person will be your frontline defense in handling his diabetes for much of his day.  Make sure that you are all on the same page!

Requesting that the school set up a "buddy system" for your son (pump or injections) should be one of your first priorities as a caring parent.  Above all else, he must be safe.  Lows and highs can cloud judgement, cause confusion and impair memory. You need to guard him against these eventualities.  A buddy can help. The buddy should accompnay your son whenever he leaves the classroom, gymn, assembly hall, lab or wherever.

One of my relatives has a T1 child who passed out from a low in a deserted corridor of school before she reached the nurse's office to report her "funny" feelings.  Someone found her, the nurse checked her bg and it was 26.  No one knows how long she lay there.  If she had had a buddy, there would have been someone to immediately call for assistance.

This might be a rare instance.  But once is once too many for a child you love.

Please let us know how things progress with your son. We're getting to feel like we know him!

Spirit

 

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I was diagnosed at the end of April, and the only person who mentioned a pump to me was my diabetes management nutritionist.  She showed me three different types, but the one I was most interested in is called OmniPod.  You may review it at MyOmniPod.com.  It is "tubeless" and can be worn three days before changing.  You child may also swim, bathe, exercise, etc without needing to remove it.  I take four injections a day and the one stick every three days is very appealing to me, as well as being tubeless, because I would worry about the tube getting tangled up in something.  OmniPod will even send you a sample (no medicine in it) to wear in order to see if your child would like it.  I am not sure how insurance will cover it, but I know from other family members, pumps can be pretty pricy.

I wish your son and family well in the adjusting.  It is quite an adjustment for me as well.

 

 

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