Continuous Glucose Monitor - 5 yr. old

Hello. Background: We are in the process of evaluating Pumps for our 5 year old daughter. Animas and Medtronic seem to be the front-runners in our evaluation. The OmniPod is not available in Texas so I don't know where that would rank. We have been diagnosed for about 6 months.

Question: With the approval of Medtronic's Paradigm pump with continuous glucose monitor (CGM), does anyone feel the needles in the CGM are small enough that you would consider it for a 5 year old (less than 40 pounds)? If not, are there other CGM devices available or soon-to-be available that you would recommend?

One concern of mine is that after we get the pump, if we also add a CGM, there will be so many things connected to her little body. The newer needles from Medtronic looked smaller, but are they painful to the child? If so, we will wait for newer technology. Yet, the thought of continuous monitoring could help respond to the extreme situations (highs and lows) that she faces. Those lows can be so dangerous at times we aren't expecting (such as nighttime).

Thank you.

 

As far as I've seen, the Medtronic CGM is only approved for people 18 yrs. old and older. I've seen from other posts that it is very irritating and to some, not worth it. My son is not yet on a pump, but having to worry about both things right now for me would be too much trouble. If she takes finger checks well, I would stick w/ those. Do you test in the middle of the night?

Linda-[NEPA]-Mom to:
Hunter, 5 yrs, dx'd 11/14/05 type I
Colby, 7 yrs, migraines

 

Linda:

Thank you for the response. We do not test during the middle of the night unless she is sick or if we have to give sliding scale insulin at the bedtime snack. We test at random in the middle of the night about once every 3 or 4 weeks and haven't had a deep low... perhaps we've seen her as low as the upper 60s. When she is sick, we are more aggressive. Do you feel we are making a mistake by not testing during the night more often?

 

Imho....

I could not go without testing thru the night at some point. There are so many variables that can take place. We have been diagnosed for just over 1 year and my daughter is 5 and 36 pounds. I have had to treat her at night numerous times , sometimes as low as 2.3 , I shudder to think what may have happened if I did not check her on those occasions.

I am personally of the belief that .......we test during the day to keep close control of our childrens BG , diabetes does not ...unfortunatly go away at night time.

 

Mojo:

Thank you for your input. When we prepare for the Pump, we will be testing at Midnight and 3:00 everynight for 4-6 weeks. But, after we complete that process, how often would you recommend performing a nighttime check?

 

One blogger is blogging about his experience with the DexCom
http://www.insulinfactor.com/article_dexcom.html



Re the Medtronic, I recommend you read the oldest posts to the newest ones at Wil's blog re the Medtronic CGM technology in order to decide how much you want to deal with, with respect to this product: http://lifeafterdx.blogspot.com/. You'll have to hunt to find the beginning of his experience and then follow his wonderful explanations in detail.



Have you seen this picture of the Guardian RT CGM and an infusion set with the separate pump on an 11 year old child's belly?

 

The inserter for the CGMS is well we used it in 2002 and it scared the crap out of me and it almost stoped our son for getting a pump! That's not to take away form the CGMS it helped us figure out the dawn effect and how to treat it properly. It's great but it's still at least 6 months from anyone getting it. it was just approved in the US but I understand that it's been in Canada a while. As far as making a decision check out the FDA and the CDRH website they report issues with medical devices it's like getting a report on durability and issues that you can expect. http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMAUDE/search.cfm?searchoptions=1

You will always check at night as our children grow their needs change and if you don't know whats going on at night you could wake up to some very scarry issues. Our son's siezures all occurred at night we've had two in 1 year and now I check before I go to bed around midnight and maybe 1 or two times a week at 2:00 am... When we make changes to basel between midnight and 6 am I check at 12:00am 2:00am 4:00am and 6:00am until I'm sure he will not go low!!! Otherwise I don't sleep becuase I worry about his numbers... A siezure is very scarry and the affects last for about 12 to 16 hours and once you experience it you do everything to stop it!

Jeff

 

We too are in the middle of moving our 5 yr old daughter Mia to a pump. I will continue to write about our experiences as we move along (see seperate post). Our training is set to start May 1st and will continue for 3 weeks. We have decided to go with the Animas Pump, mostly because of their excellent customer service and the need for small insulin dose adjustments, as Mia is very insulin-sensitive.

As far as checking at night, I check her every night before going to bed around midnight and if she is low (and needs carbs) or high (and needs a shot), I recheck once and sometimes twice. We have a pretty good idea of where her numbers need to be for her to wake up between 100 and 180 in the morning. As we move to the pump I assume we will be checking even more than that. I am really not sure what to expect but I will share our experience as we go thru it. Good luck to you!!

 

We are on the Animas 1250 pump. It has been wonderful so far, with just a few hiccups here and there. We have been lucky that her lows have been during waking hours and could be treated quickly. In the beginning (usually lasts 3-4 weeks), you might need to check as often as every 3 hours, and take copius notes. The d-team needs info. on every ounce of food, bg, insulin given etc. Always have a notebook handy! This enables them to adjust either basals or insulin to carb ratios to keep the numbers nice and steady. Our 5yr old has been on the pump since Feb, and we still have changes every few weeks. We are finding we need to make adjustments to accomodate the warmer weather now. We currently check at snacks, meals, before her bed and before our bed. On top of that, in the middle of the night if 1. She is low 2. Basals have changed 3. Very high. I or my husband will check again if needed.
The continuous gm looks like it has potential down the road, but I personally wouldn't want to add anything else to our regimine right now. Our daughter is so tiny, it would be just too much, and on top of it she has very sensitive skin, so the inset is about all she can handle. Also, I don't think it is approved for anyone under 18 right now. I will be watching to see how it is working for others though.

Good luck.

 

We are also in the process of changing to the pump on our 5 yr. old daughter. i was also happy to see the new products with minimed but not happy to see all the stuff to be hooked up to a small 5 yr old. Also, after talking to our endo, they said even though it is approved, it soes not mean your insurance will cover it since it is a new product. Animas and Mini med are the front runners for us also and the animas co. is actually coming to our house for a one-on -one demo which I thought was great. As for our 3 am checks, we started doing it since the weather here has changes and she is so active, we want to make sure she has no middle of the night lows. Good luck.

 

Great info in this thread. My 5 yr old was diagnosed a couple of weeks ago, and we hope to have her on a pump before she goes back to school in the fall. This is exactly the kind of stuff I was wondering.

 

That's a whole lot of hardware on that childs belly.
Not sure how any child could cope with that all day every day.

 

I just spoke with our minimed rep and got the latest info about the sensor. It is a flat fee of $999, (not covered by insurance), and then $35 per month for the needles. They have to be replaced every three days, just like the infusion sites.
The needle is much smaller than the CGMS that was mentioned in an earlier post, but it is a needle, not a catheter.
They will be activated the second week of June, and can be ordered now. There will no longer be a need for the second pager-like device, as all blood sugars will go directly into the pump.
It IS available for children and my rep is getting the pediatric clinical trial info for me and I will post it if anyone is interested.
I have to say that the picture below must be a small 11 year-old, because the sensor didn't look that big next to my 7 year-old son, and he's pretty thin. (My husband wore it for a week so we got to see it in person.)
I am, however, concerned about it's size on a 1 year-old. The good thing is that you can disconnect the sensor during the day and reconnect at night, naps, etc. and it will alarm if blood sugars fall below a set level, so no more night testing!
I'm hopeful for the chance of a full nights sleep sometime in my future!!

 

Are you sure it's $35 a month? When I called I was told $35 per site which lasted 3 days. I specifically said "so it's about $350 a month?" and she said yes. I'd be a lot more interested if it's $35.

 

Yes! It's $35 per box, and there are 10 in a box. So if they last the full 3 days, it should last one month.
My rep is buying one herself, (she has a five-year-old D daughter), so I'm pretty sure she knows.
I think the company is trying to make it somewhat affordable since insurance companies won't cover it yet.

 

Thanks! I was a little annoyed when she told me 350 a month was right.

 

I've also confirmed with the rep tonight - it's $35 PER SENSOR.

The initial start up is $999 for the transmitter and 10 sensors. Thereafter it's $35 per sensor.

The transmitter is warrantied to last 6 months, but they anticipate it'll last 9 months. It'll need to be replaced at $1000 per.

 

Yikes! If it's really over $300 per month there is no way we'll be doing it. Especially if it needs to be replaced in 9 months. We've got enough medical expenses as it is!
I guess I'd better make a few more calls!

 

We are going to be getting our minimed pump for our 2 year old daughter next week. Im so excited! The continuous blood glucose monitor got approved last week but only for those 18 years of age and older at this point. This is what the rep at minimed told us just last week. We were a bit disappointed but at least we will have her on the pump now

 

Look at it this way, this is a new product in the testing mode. Within the next few years, if this is successful, the sensor will probably be smaller, possibly integrated into the pump, and most likely covered by insurance. It will probably be worth the wait!