Wednesday, October 20, 2010

Hoping for extra security...

I havent really mentioned for discussed this on here cause I wasnt sure if I wanted to share this or not. I will say if you have anything negative or derrogatory to say please dont post. Thanks. We have applied for SSI for Justice. We actually did this before I got laid off. Here in Vegas there arent full time nurses in the school and adminstering insulin can only be done if a parent cannot. Which is fine by me. Less chance of mistakes. But that leaves us with really only one income. We need the help. Even though Justice finally had medicaid it doesnt cover nearly enough strips and theres always emergency needs as well. Lets not even get into the fact that dh and I have no coverage at all. But this is for Justice we decided if he gets approved we will work out the payment plan to get him the Dexcom 7+. We havent gotten a dcecison yet but we have an appt this weekend with their endo. Please keep your fingers crossed that he gets approved. A cgm would really make such a difference. The ping gas been life changing but I know what a difference the cgm would make too. I am determined to do whatever I must to get Justice the best for his diabetes care.


Denise said...

Not to put a damper on things, but Dex is may not be the life changer you are hoping for. We got ours a couple months ago and I kind of hate it! We actually test more often. We have a lot of issues with discrepancies. Don't get me wrong, it has it's moments. We have caught a couple lows that we wouldn't have. We have learned how his body reacts to foods and insulin. But other than really pisses me off!
As for getting aid, don't ever be embarrassed about doing what is best for your family. I admire all that you do. Hope you get what you need!

Cindy said...

I agree with Denise, don't ever be ashamed of seeking out help for your child! You're doing what is best for him and that should never be considered a bad thing!

As for glucose do end up testing a lot for them. They have to be calibrated several times a day in order to be as accurate as they can possibly get (which isn't very accurate a lot of times) and can be a big headache sometimes. But...some people love them. You just never know until you try it out.

Not sure if you guys are pumping or not, but I know if we get our test strips with our pump supplies, we can get 500/month instead of the 300. And for a lot less than we'd pay at the pharmacy!

Heather said...

I agree, don't be ashamed to get help for you son.

As far as the CGM goes, We really love ours. We do get discrepancies on occasion. You have to remember that is an an average and not actual. Still it should be within a 20-30 point spread either way. Same as a meter. The meter is only more accurate because it is real time rather then an average.

We only calibrate our DexCom twice a day. Once in the morning and before bed or if I check her blood sugar and there is more then a 30 point spread either way. We find it to be accurate most of the time.

When we first recieved ours I was calibrating at each meal and each time I would check her blood sugar. I found it was horribly inaccurate. It frustrated me. When I called DexCom's Customer service they told me I was calibrating too much. They were excellent and also gave me a tip that if the Reciever was too far off to check the blood sugar, calibrate and then re-check blood sugar in 15 minutes and calibrate again. The few times I have needed to do that, it has worked great!

I have to admit the alarms can be annoying at first but you quickly learn which ones you need/want to hear and which ones you don't.

Good luck with everything. If you have any questions about DexCom feel free to ask. I will be praying for you, I hope that is okay!

Amanda said...

Good luck, we applied for SSI right after Kortnie's diagnosis, I had to quit my job too. She was already on Medicaid at the time or her diagnosis. We however were denied for SSI benefits, they told us that since she has her diabetes under control and her life hasn't been affected that she doesn't qualify as being disabled, WHATEVER, I guess to them we have her under control and she seems fine, but to me this new way of life is not fine. Oh well, good luck and if you do qualify I'd be curious to hear about your experience on getting qualified, I still think about re-applying.

Alexis of Justices Misbehaving Pancreas said...

Thanks everyone for the support. I do know CGM isnt always accurate but it would definitely be beneficial in catching those lows, especially at night. He doesnt wake when low which is scary.

Cindy we are pumping but since Justice is on Medicaid the monthly limit for strips is 300 no matter if we get it at the Pharmacy or distributor. But they pay for 15 sites and cartidges a month and alot of ketones strips so I am choosing my battles. The pump was cash pay, they wouldnt even look at the RX for whatever reason, so my dad financed it.

I am hoping we get approved and we can have the extra funds to do all we need to for him.

Amanda I will keep you posted. Did they have her see their endo as well?

Reyna said...

If you have questions on the CGM I would be more than happy to answer them Alexis. Joe loves Dexter and I do like it for trending. It is beneficial for that for sure...and it has helped us in managing Joe with all of his activities. Is it 100% accurate - hell no....but it does help take out some of the guess work as to what is going on in between checks.

I am with the others...never be ashamed to seek out assistance for your child. I heart you.

Meri said...

I hope your family gets the assistance you need. You are doing the right thing for you and that is what is important! I know it isn't easy, but I applaud your resolve to do whatever you can. ((HUGS)) to you!

Kris said...

You won't hear anything negative from me. We do whatever we need to so we can help our kids as much as possible.

We have had the Dexcom 7 Plus for 4months now and we love it. No, it's not the answer to everything. But it really does help.

Good luck to you. I'll be praying you get the assistance your family needs!

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