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My daughter was diagnosed at age 6 and was put on insulin and oral meds, she's now 13 years old and the battle for a
pump started in 2005 and still they refuse to put her on it. We reached one mile stone she got approved fro the CGM
today, but still no pump. Wow what has to happen for this to be done. Shes tired of shots and constant pricking, her
fingers hurt all the time and have black dots on them. Can't the doctors realize the pain our children feel. Life has to get better, I hope. This has been a roller coaster for us with constant highs and lows it's hard to know exact levels. She checks 6 times a day and takes 4 shots a day. The freedom is not there every where we go we have to take vials and insulin and her meter. Even when we go out to eat, she get embarrassed when she has to check her glucose before she eats and take insulin in public, she hates it. I'm praying for a cure soon it would be so well for all our children with this terrible disease. God bless every one.

Views: 32

Comment by Amy on November 8, 2010 at 5:07pm
I know I'm an adult but I understand how she feels. my dr approved for a CGM but not for a pump. I understand not wanting to carry meds, etc with her. I wonder the same question on how do I get approved. Where I go, my A1C has to be 8% at least. I'm at 7.2% and I have to wait 6-8 months. But I am still going to fight for it.

So dont give up the fight!!!! Keep on fighting and keep telling her dr this is what she wants, etc.
Comment by Betty J on November 8, 2010 at 6:05pm
Have you thought about shopping for a dr. that will approve a pump for your daughter?
Comment by Jan on November 9, 2010 at 6:54am
I can't believe your endo will not approve a pump for your child. I would search around for a pediatric endo who will fight for your child by overriding the insurance company's restrictions (yes, they can do this). Generally, the endo will fight the insurance company, and you may need to get a Case Manager from your insurance company to work with you on this, and after medical documentation by the endo why your child needs a pump, the insurance company will give a preauthorization number which should be written on the script and you need to note that preauth. number as well. I am assuming your child has LADA, some form of Type 2 or diabetes caused by cystic fibrosis and still has C-peptide function. They are probably using the Cpep numbers to prove she doesn't need the pump. Keep fighting and I would start calling up Ped endos. endos who are willing to take the time out of their busy practice to do the paperwork. I have heard even a regular Pedi can prescribe a pump so look into your regular pedi as well. Good luck. Ironic that you were approved cgms; we had to go through all of the above to get cgms.
Comment by NOLA on November 9, 2010 at 9:11am
Comment by Fighting for Stephany on November 10, 2010 at 10:51am
I'm currently looking for a new Endo because this one is not working for us. He's very hesitant in saying no to do what we need to get BS under good control. But it's always no. He approved the CGM for her but not the pump. The battle continuous.
Comment by Jim on November 13, 2010 at 4:09pm
Are you sure a pump will be any better for her? I was on one for a year and a half and have now switched back off it. The tube constantly got caught on stuff, it's always attached to you so you can't so much as sit on the toilet without figuring out what to do with it (unlike a CGM that you can set on the bedside table), and most importantly, your A1c numbers may not improve at all - mine didn't. You may also get infections at the infusion sites, painful sites, etc.

Personally, my A1c's dropped into the low 6s on average when I went on CGM, but saw no further improvement on the pump, and I got scarring and infections that never happened before, plus had to switch insulin types because while it had worked fine for years on single-dose syringe delivery, my body did not want to get Humalog in the same place for two or three days.

Anyway, I wish you luck with it and it may be great for you, but be warned - not everyone finds the pump to be a panacea.
Comment by Fighting for Stephany on March 26, 2011 at 1:55pm
Update: She finally got her insulin pump, but getting her started on it has become more difficult then getting the pump itself. We gotta take 3 classes and see a nutritionist and get a censor put on fro 72hrs. before she can start. The wait continues. We have waited this long a bit longer is worth my childs health.
Comment by Fighting for Stephany on March 26, 2011 at 2:00pm
I need some advice on glucose issues. During the day she stays in her target range, but 2hrs after dinner and while she's sleeping they go up. I count carbs so she's only getting about 35 carbs at dinner. Any suggestions.
Comment by Betty J on March 26, 2011 at 4:42pm
Diabetes requires constant attention no matter how long you've had it. With the pump it requires more attention but once you and her learn the pump it will afford her some freedom. With this disease the education is continuous in order for us to live a healthier life.
Comment by Fighting for Stephany on May 1, 2011 at 9:36am
We finally got her pump approved, but now we have to wait till June when school ends to be put on it. She has to take more shots now because every time she eats she counts the carbs and calculates how much insulin she needs. She eats every 4 hrs and snacks in between. But we are waiting patiently for this day to come that she can start her pump therapy and have freedom from constantly giving herself shots. Sometimes drs think that they are doing the best for their patients, but in the end the choice is ours, drs need to realize that we also know whats best for us too and that not every thing has to be decided by them.


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