The kids are finally getting Insulin Pumps!!

[gardendame]

DD (7) and DS (8) are finally getting insulin pumps. It will take about one month for them to come in and for us to then be trained on them.
DD was diagnosed as an infant and DS was diagnosed two years ago. Our old endocrinologist said he wouldn't give them a pump until they were 10 years old, even though DS "really needs to be on one to regulate his numbers." DUH - why does he have to wait until he is 10, even though you, dear doctor, thinks he needs one now?
Well, we go see a new doctor who immediately looks at his lab work and his blood sugar log and says, 'Ma'am, he really needs to be on a pump. Is there a reason why you haven't put him on one?" (financial/insurance/etc.)
He then examined my daughter, reviewing labs, blood sugar readings, etc., and tells me she really should have one also. Even though she is only 7, she has had diabetes now for 6 years and, with her readings jumping DAILY from below 40 to over 500 several times throughout the day, we need to be careful of complications. He says "with the technology we have in the 21st Century, there is no reason why these kids should have readings like this." THANK YOU GOD FOR SENDING US TO THIS DOCTOR!! Even if I had said 'no' to the pumps, he said we were on entirely the wrong regimen. He changed around their dosages and, even though it has been less than 1 week, they have not had one single reading below 100 or above 200!
Just had to share our excitement. I could kick myself for not switching doctors sooner.
By the way, don't pay attention to our counter below - we moved our First Ever Family Vacation to February to give us more time to adjust to life with the pump.
Any pumpers out there???

 

[Nanajo1]

I recently attended a class on insulin pumps and the speaker told of a toddler she knew on the pump. It looks like quite a commitment but the results are amazing. Pump users can live a more normal lifestyle.
Pixie dust to you and your family.

 

[SueM in MN]

Excited to hear your news.
It is really hard to leave a doctor (I have personally switched 2 times in my life for myself and once for each child), but usually things work out for the best. Sounds like you found a really good doctor.

 

[LindaDVC]

I love my pump and I am sure your kids will find life easier with it!

This weekend I was at a retreat and a few were curious about it and asked if I minded sharing some about it! I said I was happy to because you never know who will need to know how great they are. I still have swings but can control and adjust so much easier now!

Linda

 

[gardendame]

Linda,
If you don't mind my asking, but which pump do you have? We are being bombarded by sales reps, now that the doctor has approved everything. The MDs favorite, and ours I think also, is the Mini-Med Paradigm. Of course, I am basing my opinion solely on the best sales pitch
Which one do you have, and what are the pros/cons of it?
Thanks!

 

[DisneyFanGuy]

I am interested too in which is best. My son is a Type 1 and the doctor is transitioning him by the end of the year. Not sure if insurance will cover, but it's an investment that my wife and I want to make reguardless.

We have several brochures, videos, and our doctor is recommending one, but we still have choices.

 

[Selket]

It just amazes me that doctors will not put kids on insulin pumps! Our good news is the same as yours - my 2 year old son was diagnosed with diabetes in March 2004 and the paperwork for his pump went in today - it should be here and hopefully, if he will wear it (!) he'll be pumping in about 2 weeks.

We went with the Animas pump because of it has the lowest basal rate of the major 3 offered in the USA (animas, minimed and cozmo). I like the minimed paradigm pump fine but I REALLY dislike that the infusion sets are proprietary! With the animas pump you have your choice of sets - same for the Cozmo. Our insurance wouldn't cover the cozmo but some feel it is the best because it now has a very small blood glucose monitor that will attach to the back of it and has more flexible features (such as in the insulin on board feature) than the other pumps. All 3 are great pumps.

The Children With Diabetes folks (http://www.childrenwithdiabetes.com) sponsored a conference on children and pumping in Washington DC earlier this month which was just fantastic. They have many great conferences and are well worth attending - their annual conference is actually next July at Disneyworld! Their website has some good info and links on pumping. The chat room there is invaluable. I have many links to resources if you're interested I can post them here (?) or pm me.

Best of luck to all of us with the pumping!

 

[SplashMom]

Once you are trained on proper usage, you will love the pumps! I also have two children that are type 1 and both have been wearing a pump for over a year now. There is quite a difference in their blood glucose, not to mention the flexibility they now have. Both are teenagers (DS17/diagnosed at 11 and DD14 disgnosed at 7) which makes things much easier. Even little things like being able to sleep in a bit makes life much more "normal". It takes a little getting used to and the basal rates take a bit of time to perfect, but be patient. It is definitely worth it in the end! My kids have Minimed Paradigms and we don't have any big complaints. We did have an issue last summer because they were initially sold as waterproof. We had problems immediately after the first swim with the pump on. There were malfunctions which caused a bit of panic but replacement pumps were immediately sent. The company has since stated that the pumps are "splashproof" not "waterproof". Now the kids take them off while swimming. We haven't had a problem since. Good luck!

 

[minniesfriend]

Hi! You'll love the pump. Our endocrinologist is one of few in our area (Charlotte, NC) who will put young kids on a pump, too. Our son got his last Labor Day weekend. He was six yrs. old and diagnosed at age 5. It has given him such independence and we have heard fewer cries from pain. (His Lantus would sting him for some reason). I was thinking the other day that it seems like these last two years have been some of the longest of our lives, but the pump makes life seem more....normal.....if you know what I mean.

Anyway, we chose a Cosmo and have been pleased. They just approved a blood sugar monitor that attaches to this pump. If you go to their website, you can check it out. We just got the new monitor attachment this week and he really thinks it's cool. It works just like his Freestyle monitor and uses the same strips. It also stores his readings. One less thing to carry......

By the way, if you don;t know already ( we didn't at first) make sure to ask for Emla creme or LMX. This is numbing creme. He doesn't even feel it when we change his site.

Good luck.

 

[LindaDVC]

Hi-

Sorry it has been so long in responding-- after many computer issues the hard drive crashed and we are just getting things working agian!

I have my second minimed-- this one is a 508. I choose it over the paradim (?sp) since it holds more insulin. I admit I prefer to wait as long as possible between set changes!

Minimed has always been great if I have a question or problem. I have a friend who works for an insurance co and she says they keep calling to get one approved! SHe found them annoying but I say I am glad they advocate and keep fighting for us!

Linda

 

[missypie]

I don't know much about diabetes. Please explain to me (in simple terms please!) why a child is not put on a pump promptly after after diagnosis. A friend's 4 year old was recently diagnosed, and expected her to be on a pump but she's not.

 

[vasoccermom]

OK, please break it down for me...
My daughter (almost 8) was just diagnosed w/Type 1 last year. Although her numbers do jump around a bit, she's never felt any worse than just being shaky at times. She doesn't mind her injections and has even started injecting herself in the thigh.

Can you please tell me what the huge advantage to getting a pump is? Her endo wants to leave the decision totally up to us (but my endo doesn't think we should rush into it).

Every time I go to a diabetes fair, etc...it seems like a huge advertisement for the various pumps so that's not the best place to compare.

Thanks to everyone for their replies...can't wait to hear what y'all have to say!

Karen

 

[SplashMom]

Your daughter is still relatively young and if newly diagnosed, is probably still in the "honeymoon" stage. Once my children hit the preteen and teenage years, hormones take over their bodies and it is much more difficult to control their blood sugar. They could eat the same food at the same time each day and do the same amount of activity and could vary from extremely high sugar to extremely low. The pump has allowed us to give constant insulin which reduces the amount of bouncing around. In addition, it gives them much more control over timing their food--if they aren't hungry, they don't have to eat at a specific time. Also, they don't have to get up early in the morning for their injections because they are still getting their insulin. To many people, this might not seem like a big deal but sleeping in until 9:30 or 10:00 on a Saturday morning is a big deal to a 15 year old! There are some challenges--we have to test blood sugar quite often, but they would prefer this to getting injections 4 times per day. The pump infusion set is only changed once every three days--eliminates many painful injections. Getting a pump is a personal decision and it isn't for everyone. Becoming familiar with the disease is the first thing--once your family has had time to adjust, it may be an option for you. Good luck!

 

[gardendame]

Originally posted by vasoccermom
OK, please break it down for me...
My daughter (almost 8) was just diagnosed w/Type 1 last year. Although her numbers do jump around a bit, she's never felt any worse than just being shaky at times. She doesn't mind her injections and has even started injecting herself in the thigh.

Can you please tell me what the huge advantage to getting a pump is? Her endo wants to leave the decision totally up to us (but my endo doesn't think we should rush into it).

Every time I go to a diabetes fair, etc...it seems like a huge advertisement for the various pumps so that's not the best place to compare.

Thanks to everyone for their replies...can't wait to hear what y'all have to say!

Karen

I am happy your daughter is doing so well. I remember the first year after each of my kids were diagnosed. I thought it was horrible, only to look back now and WISH we had that kind of blood sugar control again. The first year is typically the easiest, as most people are still 'honeymooning' and require less insulin.
Once your daughter gets to the point where things are not as stable, you will start wishing for a pump. The honeymoon will end and her body will not be making any of its own insulin, then things will get tougher. It will be obvious, and then you will know. The tell-tell sign for us with my daughter was when it got to the point where she could literally eat the same thing two days in a row, take the same amount of insulin, and have a completely different set of blood sugar readings for the day. The breakfast that would sustain her at a normal number at lunch time started giving her a lunch reading of 37 one day, and 437 the next day. As more time goes by, the more necessary I feel the pump is.
The BIGGEST reason for me - All three of the children we know who already have pumps have had their A1C's go from 9, 10, or 11 to 6.5 or 7! All three of them! This is a HUGE improvement, as a normal A1C is between 4 and 6 in a non-diabetic person. The lower you can maintain that A1C, the fewer chances of complications as they get older. Since my kids were diagnosed so young (14-months, and 6), their chances of developing complications before they are 30 are very high. I will do anything I can do to help them keep their vision, their kidneys and their feet. If it were up to me, I would make it mandetory that all diabetic children be placed on insulin pumps. But, some doctors are a little behind the times when it comes to modern medicine.

 

[minniesfriend]

The insulin pump has given our son (7 years old - diagnosed age 5) much more freedom and independence. He is free to eat (within reason) what he wants, when he wants. He rarely takes shots (4 to 5 per day before the pump). He is much happier and there are fewer tears. It is much easier to allow him to attend parties and spend the night at grandma's. The pump automatically doses and infuses the insulin after he programs the carbs.

Still, the pump is not for everyone. This has just been our experience.

 

[DisneyFanGuy]

My son's last A1C was an 8. Not terrible but not the greatest either. Our doctors tell us that a well controlled diabetic can achieve a 7 pretty regularly, and that we really need to be there to reduce the chances of complications long term.

He is 18, and really works his insulin routine, but still has high numbers a fair percentage of the time.

Our doctor has encouraged us to consider a pump. He says that our son will be able to achieve a more consistent, near normal blood sugar. They have no proof (these things are too new) but everyone believes that far fewer diabetics will suffer the horrible long term issues that come from consistently high sugar levels, because proper use of the pump will keep them closer to normal overall.

So our son is pretty eager to get onto the thing. He is using lantis (a much longer acting insulin) combined with more frequent shots of short term insulin to transition to the pump. That way we can get the sliding scale correct for his matabolism.

He immediately began having low blood sugars, but worked with his doctor to adust the dosage. So far so good. We hope to have a pump up and operating by January.

This is a terrible disease. No child should have to fact their mortality at 14 (when he was diagnosed). I am very proud of my son and his response. We have never given him a single shot. He has done it all for himself from the beginning.

 

[Selket]

I just wanted to add that we put William (age 2, dx'd March 2004) on an insulin pump on October 22nd. It isn't all a bed of roses but diabetes isn't anyway! The biggest challenge has been to figure out his basal and bolus rates and as someone noted that their child could eat the exact same meal at the same time and same conditions and have some wildly different numbers it seems the same happens with William sometimes. However I think he likes not getting injections 5x a day and we certainly like the flexibility the pump offers.

If you are interested in pumping talk to your doctor and call the pump companies and ask them to come to your house and bring a pump for you to look at and perhaps wear on yourself (or have your child wear it) for a few days. Try out the different infusion sets (the part that sticks into the skin) and see how you like it (or don't!). That will go a long way to helping you figure out if pumping is for you and which pump.

Good luck to us all!