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parents of kids with Type 1

Information

parents of kids with Type 1

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

Members: 1371
Latest Activity: Apr 2

Tudiabetes resources related to parenting kids with diabetes

Diabetes Forum

Discussing T1D Complications with Children

Started by aimeeh2oski. Last reply by aimeeh2oski Mar 25. 4 Replies

Thyroid labs

Started by PhDiabetes. Last reply by PhDiabetes Mar 24. 7 Replies

Levemir & Lantus

Started by MisMelissa. Last reply by rgcainmd Mar 8. 4 Replies

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

Comment Wall

Comment

You need to be a member of parents of kids with Type 1 to add comments!

Comment by Elizabeth on March 25, 2015 at 7:24am

MABBAS, you can start your son on CGM at any time. My son was only 3 when he was on it. We stopped using it because of cost — my insurance didn't cover a lot of the expense — but it was worth every penny of the 2 years I paid for it because it taught me a great deal about when Eric's insulin needs were highest (at night, from about 8 pm to midnight) so I could adjust his basal insulin rate from his pump to compensate. Even 3 years after we stopped using it, the information it gave me is still helping us.

Comment by MABBAS on March 21, 2015 at 8:54am

my son is 5 yrs and 6 months he diagnosed one year ago i need to know when i can start wz him wz CGM ?

Comment by Elizabeth on March 7, 2015 at 7:00am

Heather, my son had a Minilink CGM for two years, and my relationship with it was love-hate. I loved having something that would alert me if there was a serious BG swing going on; I hated that it was so damned expensive (insurance only covered part of it). It was disruptive during the early days of kindergarten because it kept alerting at inappropriate times (we later figured out that the battery was dying) and ultimately when Eric developed an allergy to the metal used in the sensor cannula, I felt rather relieved to dispense with it. It had the benefit of showing me fairly clearly the timing of Eric's pattern of insulin resistance, and I still use that info in adjusting his basal rate to this day — but I don't really feel the need to have it back at this point. Maybe when the adolescent hormones start throwing everything into chaos, I'll change my mind, but for the time being, I got out of it what I needed.

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

 

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From the Diabetes Hands Foundation blog...

DHF Joins Diabetes Advocacy Alliance

Diabetes Hands Foundation is incredibly honored to join the Diabetes Advocacy Alliance, an organization with the drive and potential to affect a powerful, positive impact on diabetes and healthcare policy. Diabetes Advocacy Alliance is a 20-member coalition of leading professional Read on! →

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HELMSLEY CHARITABLE TRUST GRANTS SUPPORT TO DIABETES HANDS FOUNDATION FOR FOURTH YEAR  Funding in 2015 to support major transitions in programs and leadership at Diabetes Hands Foundation BERKELEY, CA: February 18, 2015 – The Leona M. and Harry B. Helmsley Read on! →

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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