parents of kids with Type 1

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parents of kids with Type 1

This is a group for the parents of kids with diabetes.

Members: 1363
Latest Activity: 15 hours ago

Tudiabetes resources related to parenting kids with diabetes

Diabetes Forum

Intensive Summer Sports Training for Youth?

Started by PhDiabetes. Last reply by tommy 15 hours ago. 1 Reply

Levemir & Lantus

Started by MisMelissa. Last reply by rgcainmd on Wednesday. 1 Reply

Getting it off my chest

Started by Jennifer Feb 16. 0 Replies

Life Insurance for T1D Child?

Started by aimeeh2oski. Last reply by april Jan 30. 6 Replies

Abandoning Responsibility

Started by Laura. Last reply by Laura Jan 9. 8 Replies

Humana in Texas

Started by dalajosa Dec 30, 2014. 0 Replies

Help with Huge Lows with little insulin

Started by rjhufnagel. Last reply by sarah Dec 17, 2014. 11 Replies

Pet peeves

Started by 1eyednurseguy. Last reply by kcolbertandco Dec 16, 2014. 30 Replies

Sleepover at 8 years old?

Started by Jennifer. Last reply by cass1972 Dec 15, 2014. 7 Replies

Disagreement over CGM

Started by Kate. Last reply by Kate Dec 9, 2014. 7 Replies

Bent cannula

Started by macfrizz. Last reply by Sarah Howard Dec 1, 2014. 7 Replies

Time for the Ophthalmologist

Started by aimeeh2oski. Last reply by aimeeh2oski Nov 17, 2014. 5 Replies

Ketones

Started by cass1972. Last reply by Elizabeth Nov 16, 2014. 7 Replies

New pump user - uncomfortable site

Started by macfrizz. Last reply by Jo Momma Nov 15, 2014. 16 Replies

Refusal for Field Trip

Started by Kelly. Last reply by KalebMommy Nov 13, 2014. 30 Replies

JDRF’s Children’s Congress

Started by Emily Coles Nov 10, 2014. 0 Replies

Grace's Mom

Started by kcolbertandco. Last reply by Elizabeth Nov 10, 2014. 2 Replies

Problems with Blood Sugar testing

Started by Jennifer. Last reply by Jan Nov 6, 2014. 10 Replies

Tips for talking to kindergartners about T1D

Started by aimeeh2oski. Last reply by Horizon22 Oct 31, 2014. 3 Replies

Comment Wall

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Comment by HeatherL on February 16, 2015 at 7:44pm

Just three weeks ago I got a CGM for my 9yr old daughter (dx'd in Sept 2011, animas ping pump since Dec 2012). I had to pay $1,400 start up for the CGM and a one month supply of sensors. It will cost me $300 each month for 4 sensors until I hit my $4,000 deductible at which point sensors are covered at 100%. According to Dexcom, a new CGM needs to be purchased every 6-8 months (who knew the battery in it would die!) so if I can time it right I may get the new CGM covered this year before my 'new deductible year' starts. Otherwise, it'll be $1400 every time I need a new CGM (every 6-8 months!!!). Do you know if your cost for the CGM can go towards a deductible and eventually your monthly supply can get covered for that particular year?

To be honest, I haven't figured out if I love the CGM yet. Everyone tells me I will love it, just not yet. One really nice thing is that I can watch my daughters sugar numbers while she is taking part in athletics. For instance, I stand close enough to the sidelines of a soccer field and hold on to the cgm. I can peak every so often to see if she's running high or low. Same goes for when she's in her gymnastics class. I sit close enough that it still captures her sugar numbers. A negative...I have found that the CGM doesn't catch her lows until she's really low (like 61 today). I set her 'low alert' at 90 (at which point the cgm sounds off an alert) but it is obvious that I need to change that to 110 just so I catch it before she gets to numbers like 60.

Good luck. I highly suggest an insulin pump, if you haven't looked into that.

Comment by Jo Momma on February 16, 2015 at 6:54pm

in BC, Canada I was told for the dexcom CGM ongoing costs would be $350 every 5 weeks. This is after the almost $2000 startup costs that are not covered by extended. I hadn't heard to try submitting a claim and appealing. I'd like to know if that has worked.

Comment by blmil on February 16, 2015 at 2:36pm

My husband and I are interested in getting a CGM for our T1 Daughter diagnosed 7 months ago. She is 7yo and has expressed interest. Unfortunately our insurance does not cover any of the cost. We can pay for it out of pocket and submit a claim knowing it will be rejected and then appeal the decision. We are not guaranteed that we will win the appeal though. I was curious what others thoughts were, is a CGM is worth the cost? How much do supplies cost each month? Has anyone else encountered a similar situation, were you able to appeal and change the insurance company's decision to cover it?

Comment by Elizabeth on January 31, 2015 at 9:26am

Tommy, my son (now 7) was diagnosed at 18 months and got his pump 10 months post Dx. We saw an immediate benefit in terms of better control but part of that is that he was so little when he was diagnosed, we were using diluted insulin for his shots and that is notoriously hard to maintain control with. But there's no question his pump has helped with control, and in fact, we saw an immediate improvement even by upgrading from his original Paradigm 522 to a Revel a year ago, and the only difference is that the Revel allows for smaller increments of insulin delivery. Being able to give .005 more or less really does make that big a difference! The past few A1cs have been 6.9-7.2 fairly consistently, and I *know* we would never be able to get there with shots. I couldn't even get there with an earlier generation pump.

Comment by Jennifer on January 30, 2015 at 2:46pm
Yes, most flavors of the GU have a small amount of caffeine in them. For most varieties, it's trivial - probably less than a chocolate bar or soda. Not ideal of course but so many things about T1 aren't :) For our purposes and use the benefits outweigh that one negative aspect. The chocolate varieties seem to be the most tolerable for my daughter. Like I said earlier, she doesn't love them by any means but we power it down when necessary.
Comment by PhDiabetes on January 30, 2015 at 7:54am

So I bought the GU gel variety pack on Amazon without doing my homework. There's only one flavor that has NO caffeine (which I prefer for him) - Strawberry Banana -- he hates it! Any suggestions for other energy gel brands that don't have caffeine? Thanks.

Comment by PhDiabetes on January 30, 2015 at 7:53am

Comment by tommy on January 29, 2015 at 5:11pm

That is good to know! We are actually looking at Ping because my son likes the remote, and you are right he will be the one doing it. I think it makes more game like.

We are not looking a CGM at this point although I like the idea, because like your daughter, he is super active. Soccer, swimming, ect..I keep reading about new technology and thinking/hoping in five years the artificial pancreas will be a reality. sigh...

Comment by Joyful Fish on January 29, 2015 at 3:58pm

So my 10 year old started on the pump in Sept and then added the CGM in Nov. We specifically chose the Medtronic because it was all integrated into a single unit. Didn’t have to have a different device for each function. I think a lot of parent with really young T1’s choose the Animas because they can be doing the remote blousing. But you wouldn’t be doing that, I wouldn’t think. Your 10 yr old should be able to do it for himself. And the reports that the Medtronic produces are awesome. You can do such granular basal settings by looking at weekly results so we have had very few lows since going on the pump. Eg. My daughter does high conditioning gymnastics two nights a week for 3 hours each night. You can preset the basal rate to always lower a bit during those times since she was always going low during those times. Same for soccer. And set the basal a bit higher right after school during the week when they come and want to eat everything in sight. She was always going higher during this time. It has been a game changer.

The sets do hurt. No doubt about it. But it is only for a few minutes and then you don’t have to do anything for 3 days.
Also, be aware of the numbing creams. My endo told us there are some long term side effects and not to use them. She suggested instead just to use a freezer pack to do a quick numbing. Seems to work.

In any case, whatever system you choose, do the pump. Makes it much easier on everyone. You don’t really get that until you have one and you realize what you have been missing. There is a learning curve that can be bumpy but it is worth it in the end.

Comment by tommy on January 29, 2015 at 2:51pm

 

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Diabetes Hands Foundation Team

DHF TEAM

Melissa Lee
(Interim Executive Director, Editor, has type 1)


Manny Hernandez
(Co-Founder, has LADA)

Emily Coles (Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Director of Operations and Development, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)

DHF VOLUNTEERS


Lead Administrator

Brian (bsc) (has type 2)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)

 

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