A1C went up... need advice on pump vs shots. Lots of upcoming changes!

[sparkyjt]

We are planning to get Reese on the pump once we get to Hawaii, but her endo has started gently prodding us to do it now. We had planned to wait until at least Oct when my husband is active duty again and receives full benefits, that way we wouldn't have any out of pocket costs for the pump. Plus with as many changes as we're going through right now… she will be going to a 3 week training class to get her diabetic service dog in July and our move to Hawaii in Dec, we didn't think it was a good idea to throw a pump in there too. It seems that all of those adjustment in such a short time might be overwhelming for Reese (and us) especially if we throw all thats involved with starting on the pump in the mix! The endo sees why we want to wait, but has mentioned the pump again since her A1C went from 7.9 to 8.9 from March til now. She had a bout of ear infections April - May timeframe and ended up getting tubes in her ears for the 3rd time so I was expecting a higher A1C because she has tended to run a bit high the last 3 months with being sick and the ear infections. Plus we were having such a horrible time with lows we tended to be more conservative when it came to adjustments/corrections with insulin since she is so sensitive to it. The endo endorsed that conservative approach then, but since her appt with the higher A1C on Monday, they have redone all of her dosages. I'm thinking we should wait and see how these dosage changes affect things, but I'm still wondering if it's wise to wait until Jan. to get her on the pump.

Do you guys see my rationale for wanting to wait til we get moved? What would you guys do if this was your child? Do you go ahead with the pump to get a better control of her numbers or do you try to keep a tighter control with diet and shots and wait for all the changes to pass before moving to a pump? We don't have an extra 2 or 3 grand laying around to pay for what insurance doesn't on the pump, but that's not the deciding factor. We would get the money some way, but it would just be so much better if we could wait and have the military pay for it! I just don't want to jeopardize her health in the meantime. What to do??? :(

[Ellen]

What do you think is the best decision for you and your family?

I wouldn't advocate waiting until bgs are HI....but if you can work closely with your team to maintain reasonable control on injection therapy until your insurance will cover the cost of the pump, would that be less stressful? You may want to read more about pump therapy to make a decision about what will be best. The book Pumping Insulin 4th Edition by John Walsh is excellent.

We were unable to obtain reasonable control on 2 shots of R/NPH per day (many years ago) and when we were faced with switching from 2 shots to at least 3 per day or going on the pump, we switched our son to the pump. It worked well for us, the endo was a goddess and really provided wonderful pre-pump education as well as excellent support for the transition, and continuous recommendations of changes in basal rates and bolus ratios. Having a brilliant pro-pump pediatric endocrinologist can make a lot of difference too.

The pump is not a cure for diabetes and is not a panacea. There are still frustrations involved, but it has plenty of advantages too. Our son has been pumping for 12+ years, since age 7.

[Adinsmom]

I would follow what your gut tells you to do when you look at the big picture.

Having said that here is my opinion. ;) I think you have some valid reasons to wait. If you feel you can bring her A1C down on MDI while going through these exciting changes I see no reason to rush. It is after all only a couple months.

We personally have decided to wait until the end of summer to put Adin on the pump. Between financial obligations, time of year and summer activities, I just feel it is in the best interest to wait. I know Adin's bg's would likely benefit from being on the pump now, but there are other factors I took into consideration and I want the pump start to go as smoothly as I can plan. From everything I have read no matter how prepared you are there is still a learning curve that everyone experiences.

Good Luck.

[sparkyjt]

Waiting would definitely be less stressful for me as we have 4 other children, but I want to do what's best for Reese. I guess basically what I need to know is how long is the transition period for a pump? Am I looking at just a few weeks to get things down pat so to speak or is this months of training and learning?
Financially we would be better off waiting, but as much as I've read about pumps and how much better they control blood sugar, I'm not going to let 2-3 grand stand in my way. My main concern is overwhelming Reese with too many changes at once. We just sold our house and are currently moving into a rental to wait out our move to Hawaii in Dec. In about 3 weeks she will go get her dog and there's a LOT of training and a steep learning curve for her with that. Once she gets back she'll jump right back into school. She's only 8, so I'm not sure how much she will be doing to her pump. She's giving her own shots and she could probably handle pushing the right buttons or whatever on the pump if she had too, but she has a nurse at school to help her.
I wanted an opinion from people who have pumps as to how long it takes to get up and running to where you are comfortable with all the buttons and how it works. With 5 kids, there's never going to be a good time, so I'm just trying to figure out the best timing for us. With the new dosing schedule from the endo, she now gets 5 shots per day plus any corrections. :(

[badshoe]

starting pumping requires a significant effort. It sounds like you understand that and that you feel that waiting is best for the family but you are not sure if that is fair to the diabetic.

Sure it is.

My two cents is the family has diabetes, and that the family needs to address it as a family, if that means waiting, fine. Do what you can now to be ready then, learn your ISF and correction numbers and work on balance.

[Mama Belle]

I wouldn't advocate waiting until bgs are HI....

Just to clarify, I think she meant that they are waiting until they move to Hawaii (HI).

I think you need to do what you think is best. The doctor doesn't live in your life and can't know what is best for all of you. Starting to pump can be a very stressful time (just check out this thread (http://forums.childrenwithdiabetes.com/showthread.php?t=5602) from another mom who's son just started pumping). I personally think it would be best to wait until you can devote all of your time to the pump start. If you can do that now, then I say go for it. But, if you think that means waiting until after you get settled in and settled down, then I'd suggest holding off.

We waited almost five years to start pumping because my daughter just wasn't ready for it. At Samantha's one month pump follow up I said to the doctor, "I wish we had done this years ago, but she just wasn't ready then." The doctor said something to the effect of, "Had you tried this years ago, you might not have been so successful."

I think you need to listen to your gut.

[Ellen]

Just to clarify, I think she meant that they are waiting until they move to Hawaii (HI).


Ooops, I guess I've seen or feared seeing HI on the meter too many times in 18 years. Mea culpa.:rolleyes:

[Momof4gr8kids]

When Julia started pumping I almost called it off. There was so much going on in our lives besides pump start, but there always is something. I am glad we started before she came out of the honeymoon. I couldn't imagine doing that one on lantus.

However I also do not think anyone should start pumping before they are ready. Since you are the parents, and how sucessful pumping is depends highly on how well you understand, and how much time you can devote to getting it all tweaked, then that means when you are ready, too.

Then the money. Boy are those pumps expensive. I think most of us have had to figure out the best route for our own families with being able to afford the pump and supplies.

The few people I do know that have stopped pumping, their reasons have either been that it was to much stress, or that they could not afford it.

Do what is right for your family.
You will make the right decision.
Jamie

[Mama Belle]

Ooops, I guess I've seen or feared seeing HI on the meter too many times in 18 years. Mea culpa.:rolleyes:

I thought the same thing at first too!;)

[sparkyjt]

I went back and read that first line and saw how you could have thought I meant HI bg not Hawaii!

[sparkyjt]

I fixed the HI thing to read Hawaii. Hopefully that will clear things up!
Thanks for your insight. Can someone give me a rough estimate of about how long it takes from the day you're approved for a pump (which we are through the dr and ins) til when you have it on your own and are somewhat comfortable with it? Does it take months or just a few weeks to work out all the bugs and issues?
We've been approved through the dr and ins, we've narrowed it down to a couple of pumps we think we'd like although we haven't met with any pump reps yet. So from where we are now, how long does the process take?

[Mom2Madi]

We are military also and Tri Care is great insurance. We don't pay for anything. But I'm not happy with base care and have been looking into going downtown which means I pay 20% of everything - just too much so I don't think we'll do it. I'd wait till you got to Hawaii and let Tri-Care pick up the cost. I picked a pump then had it in my hands in 5 days. We chose Animas and they were just fabulous, Tri-Care is awesome too. I never went through pump classes or a saline trial. Just a 2 hour training session at my house then kept in touch with the Animas nurse by e-mail for 3 mths. I sent my numbers and she told me what to fix. I felt comfortable on my own after a couple of months doing it that way. The pumps are very easy to use but sometimes figuring out the rates take awhile. Our pump start went flawless - all the rates input worked and everything went smoothly for about 3 weeks then my daughter's numbers started going all over the place. Took a while to get the right basals as she grew a ton last year.

Last summer we left Europe for the U.S due to dx. We learned how to use Lantus/Novolog by phone 2 weeks before we left (were on NPH). My daughter went from homeschool to a school of 1200 kids. New house, new neighborhood, new life, new disease. It was a lot to take in. Started the pump 5 mths after she was dx. Kids are very resiliant and she did well but I hated throwing so much at her at once.

You'll love the pump - Our A1C is not much better (always stayed about 7.5) but quality of life is excellent compared to before and ease of corrections/eating when you want. she had 9 basal rates so you can't achieve that level of fine tuning on shots. I wish you lots of luck! Hawaii is gorgeous - I've been 5x - and you are lucky enuf to live there!

[Riley'sMom]

hi!
i don't have advice on how long it takes to get used to the pump- ours just came in the mail yesterday (so i am kind of wondering the same thing myself), but i thought i'd chime in about hawaii and making your decision. we are also military and we lived in HI for almost 3 years.

we were in the same situation for awhile when it came to making a pump decision. my husband was in iraq when riley was diagnosed, then a few months later she had open heart surgery, then we were headed to TX to welcome him home, then getting ready for a move. i know how you feel, it stinks just waiting for a good time (and i've learned from the military that there is never a good time). for awhile i was so tired of learning about D that i didn't want to start anything new. i can see how the dog training, selling your house, the move, and expense of pump are a lot of factors you would have to consider. i guess you would have to weigh that against the stresses you will have there at first- new house, new school, making new friends, etc. how does your daughter feel about starting it now or waiting?

here's what i would recommend to maybe help you a little. i think you said you checked and there is no pedi endo at tripler? i'd call the other hospitals (queens, kapiolani, i may be missing some) and see if they have pedi endos and then talk to someone in the office. find out if they are receptive to putting kids on a pump. find out how long it will take to get an appt, how many time they will see her before they will prescribe it, etc. it might give you an idea of how long after you get there it will take to get one. we just moved to VA and that's what i did. found out the only local endo won't put kids on a pump so we are sticking with one in PA. he wrote us the prescription and we'll see him for followups. the rep here will do the training. it's not the ideal situation but it will work and we will only be here for a year.

if you want to wait, but you think it might take awhile to get set up with a pump there- maybe you could have the prescriptions, letters of medical necessity, instructions for pump start, etc all ready when you move and then just work with a local pump rep to get the pump when you get there until you find a local pedi endo. i saw there was a new mom from Eva Beach on here, maybe she would have a recommendation for an endo?

also, some other things i was just thinking about concerning a PCS to HI- do you know about the quaranteen for pets? shipping your car? feel free to PM me if you have any questions!

good luck with your decision!!
jessica

[sparkyjt]

Yes, we've learned all about the quaratine and have already got the paperwork lined up for the service dog. Heaven Scent Paws is taking care of all that for us, that's the org we went through for the dog. Our other dog has an appt next week to start all of his paperwork to minimize the quarantine to less than a week. The service dog will not be quarantined.
I had just about decided to wait til we got there until I thought about all that will entail getting there... the changes in timezones and her eating on a schedule may not be easy with all the flights and getting settled in. We'll be traveling with 5 kids so just that may make it worthwhile to do the pump in Sept/Oct!
There's never a "good" time for any of this and our life is hectic to say the least. You are right about children being resilient. I think I will wait until she gets back from training to make a decision.
I have no idea if there's a pedi endo at Tripler... that's something good to check into and I'll put my hubby on it asap!

[Mom2Madi]

Hi Again,

When my daughter was first diagnosed I was told there was a Yahoo support group for military families dealing with Diabetes. It's not very fast moving but the people were very nice. I remember a few of them were in Hawaii. I think this is the link:

http://health.groups.yahoo.com/group/bnh-families/

[Ivan's Mum]

$$$ arre always a biggy. I'd wait (for what it's worth) maybe look into a i-port so that you can get used to the site changes for when you pump and you can tighten up the injections without worrying about having too many 'sticks' per day.

Sounds like you've got enough stress in your life without adding to it.

Waiting doesn't make you a bad mother, it probably makes you a better one if the time's not right.

Starting pumping leaves to pretty much tied to each other for a few days, she might be better off just finding her feet and having some fun in HI before you knuckle down and do it.

[sam1nat2]

I'd say wait if that works for you. Although many people find it easy, we had a rough pump start and are still not at the point of mom and dad sleeping through the night.
It can make things easier, but the stress can also change bg and you won't know if it is stress or the pump, just one more thing to add to your already hectic lives.
I understand we all would pay whatever we can for our kids well being, but if finances are tight a few months won't make a huge change.

Also, we saw a big drop in A1c, but it has now gone up again, just the nature of the beast being in a looooong honeymoon for us!

[MelissaC]

Reeses Mom....

For what it is worth... Mydaughter just started on the I=Port - I have heard from lots of parents about how great pumps are and we are heading that way but I was completely overwhelmed with this whole D thing that now I am on top of things I just want to keep the boat a float. I am sure that we will be pumping sooner than later but neither myself nor Avery is ready for it - In the meanitme we are using the I-Port we are on our third one and it is working beautifully! I can give her a correction before meals to cover hi's and then based on what she eats I will give her a bolus on her amount of carbs... So far so good and I have been able to correct in the middle of the night if I felt like it and not wake her up - The only downside I have found so far (and this is nothing reeally) is that I have to gflush theport with saline after each shot so it all gets in - She can still go low but at least now I am not afradi to correct before meals and thenlet her eat whatever she wants.

I was told that my insurance would cover them 100% (I have Cigna PPS) and if for some reason they would not for you retail from my distributor is about $140 bucks a month for 10 ( a 30 day supply).... Just an FYI Hope it helps

MelissaC

Avery (5) dx 2/07 MDI with I-Port

[jules12]

For us, we were counting carbs and were on Novolog and Lantus when we came home from the hospital. The transition to the pump was pretty smooth. However, my son really wanted it and didn't like getting six to eight shots a day - he is a grazier. From what I have heard/read it seems to take more tweeking to transition when you are on a different type of regimine.

The pump was approved through insurance and in our hands in less than 2 weeks. Minimed set up the training (3 hours) and we were set. We had to call in our numbers for 3-4 days. Also, when you go on the pump, at least for us, you must do several nights of checking until things level out.

We are still waiting for an advance pump class in our area.

[sparkyjt]

I spoke with the pump nurse today. She seems to agree that I should wait til we get to Hawaii for several reasons that I didn't even think of... one of which was if we move so soon after pumping we will need to stay in close contact with our pump nurse or trainers. She mentioned it would be better to have them close by in Hawaii than half the world away in Alabama. She said waiting a few months wouldn't hurt anything and that we were the ones living it not the doctor. I have to say, it was refreshing to hear such candor! So, we're going to wait.
I like the idea of doing the I-Port! Thanks so much for everyone's ideas and thoughts. You guys are the best! That doctor had me feeling bad for wanting to wait.

Julie

[Mik's Mom]

hi

just wanted to wish you and reese better numbers- i know how frustrating a high a1c can be - especially when you are doing everything "right" and you still get high readings.

my daughter was suppose to start the pump this summer- we were suppose to go to our first pump workshop may 25th- but due to some family issues with a divorce, restraing order on dad etc- her doctor suggested we wait a couple of months before we even think about the pump - as she is so stressed right now that her numbers are all over the place.

so for now we will continue to use lantus and novolog and hope i can get her a1c lower for her next check up :)

best of luck and happy numbers

~ Missy

[Heather(CA)]

I agree with Mama Belle 100%. Sounds like it would be better for you to wait, you've already got a lot on your plate. Seth has good control on shots. I think you can get good, or not so good, control with both methods. The ear infections were most likely a big factor in that A1c, it should get better next time. Like someone said, it's only a few more months. Trust your gut.