Updated "What am I suposed to do now?"

Yesterday I finally got a referral out in town! No more idiot military doctors! I finally had enough after my daughter hit not one but two lows after having Mc Donalds (not normal). So I made and appointment and spoke to her primary care and got her a doctors appt out in town! So thrilled! I have been testing her twice as much as I was told by said idiots and thank God I did. I am wondering now, what i should take to the new doctor for history for her, besides her records from WRAMC. I am having my husband put together the flow charts for the new doctor to catch them up and requesting a copy of the medical records for my daughter. But is there something else I am missing?

when you say the “flow charts” is that a download of your meter? If so - perfect… if not… I might just make sure in advance that your new doctor has the equipment to read your meter.

Other than that - CONGRATULATIONS!!! Your baby is worth fighting for! :slight_smile:

The charts we have are the ones with times from 0100 to 2400 on it, we have to hand write it with the time, date,blood glucose, carbohydrates, insulin (bolus and lantus dose) and her corrections then the total. Its a log book on steroids basically cause the meter the military gave up has the mind to work and not work, so we have to go back and write this stuff down all day.

oh wow… you’re making me realize how blessed I am. We visit my son’s Endo… they download the meter and the pump and they instantly have all the information they need.

I pray you can find a similar solution!

I used to have a nice doctor like that, but this system is preparing us for a pump suposively even though yet we have to receive a pump >.<<br />
I can’t wait for non-crappy meters either.

If our meter wont go with their components, will a lilly log book work for them (them meaning most doctors)?

I sure will! I wanted to get my daughter on the bayer meter but I am not sure what to expect.

right now i get 600 strips a month, and the meters keep breaking. I have the aviva

Hi there! I totally hear you, advocate, advocate, and advocate. This is what we have to do consistently to get the appropriate treatment and information for our kids with type 1. I have two type 1 kids, and my wife and I have to consistently present research and be courteously assertive with all the team of nurses, docs, endos, dietitians, social workers, etc…It is well worth the battle.

I agree with the comments. I would also record the numbers in a log book, and do a three day diet record, including activity, carb, measurements, the more detail the better.

Good luck and I will be thinking about you guys,

Cheers

http://www.three2treat.com

Thank you soooooo much for the encouragement, thats what we go though all the time. I have had the doctors call CPS and then chew me out and then have a social worker talk to me about my disabilities saying i have to much to handle. It isn’t their choice it’s mine and I finally have my PCM behind me.

I am keeping a note book starting today of everything; playtime, foods, amounts and all the usual things. I want to make sure i stay on top of her things so that the doctors have a good Idea of what is going on and that maybe by a long shot I might gain tighter control…

The Bayer meter is free right now. do a google search and you should find it if the link I give you doesn’t work.

http://www.contouroffer.com/ContourUpgrade_New.aspx?offer=actionkit478
Bayer’s Free Meter Campaign
www.contouroffer.com
Getting your FREE CONTOUR® USB Meter is simple.

thanks ill give it a try

Oh, I’m so excited to hear this! I had actually mentioned your situation to my son’s pediatric endocrinologist who was HORRIFIED and his suggestion had been to take her to the NIDDK clinic. He and I are writing a book together, basically a Q&A type guide for parents, and we were discussing why it was needed. He thought that it was needed pretty much as a training tool for clinics to use, but I was arguing that it was needed because sometimes even the people DOING the training weren’t giving good information. And I had used your story as an example of how parents aren’t getting the same quality of care universally. He and his group are really top-notch, and I had told him that I’ve started to really appreciate just how lucky I was that my son developed T1D in range of such a terrific group of doctors & professionals. He pooh-poohed that and said he thought most clinics were similar, and then I told him your story. Man, he was pissed! He couldn’t believe she was being cared for by military docs when she obviously needed the care of a specialist. Now she has one! Yippee!



But back to your question… the notebook you’re keeping is exactly what I was going to suggest. That will help them to figure out what sort of regimen she needs. But also, this is a chance for you to get her some of the tests that the docs at Walter Reed probably didn’t know to give her. So if she’s never had a celiac test or thyroid test, tell them that—they’ll want to get right on it. If she’s never had a vitamin D test, ask them to give her one, because if she’s deficient (and she probably is) getting her levels back where they should be will help stabilize her BG levels.



I’m grinning ear to ear for you!! Hope you’ve had a chance to pass the good news on to her daddy!

Not sure if you keep written logs but you should. We still do as I find a written log, with highs circled in red, lows circled in blue plus daily record of exercise, food eaten is invaluable. Habit becomes second nature after a while. You can see daily trends at a glance. A lot of people use electronic logs on a PDA; endo will need daily logs at first. Document all lows 50 and under in case you wish to ask insurance to pay for cgms. One of the things they look for, as well as hypoglycemic unawareness. Download meter and save records documenting this for same purpose. Insurance asked for written logs when we applied for cgms but that was a couple of years ago; times may have changed. But, unfortunately, it is normal to have lows and high fat food such as McDs give the shot after eating; combo bolus may be necessary on a pump. I always mix low glycemic food with some food that is fast-digesting, such as pizza, lasagne, Chinese with fruit upfront so the insulin does not hit before the food digests. Pump therapy, they want you to test about 8 times a day, so keep good records, count carbs and I’m sure you’ll have the pump sooner. I am so happy for you. And, remember… if this doc is not forthcoming and does not agree to the pump, call Minimed, get a list and take it from there. These endos work for you and should support you in your decision as to how best to care for your child. Endo needs to train you but once trained, you will know best, as you are the one observing your own child and the day to day patterns. You should always be able to go to them for any problems you are having, though. Good luck and congratulations!

well in a few hours i have our new doctors appointment, we got lucky and got an appointment 5 days after we called, which was just sheer luck. they even asked if we wanted to start pumping and if we researched a pump cause it would make our appointment much smoother when we come in tomorrow. so wish us luck.

Definitely wish you luck!!! I hope your next update is about when her pump arrives (which reminds me, I need to order up some sites…)

Suggest that you scour this site and read up on the variety of problems & solutions related to different pumps. Bubbles in the line, cannulas that crimp or kink, cannulas that pull out in the bath. You’ll experience them all and wonder if it was worth it in the first month or so. It is! but the more you know ahead of time, the better. If you haven’t already, get Pumping Insulin and read it cover to cover.

Appointment went so smooth! Her new regiment is just amazing, two days in and I am seeing such an improvement!

I am so happy for you! So relieved you found an endo who would listen to you and your daughter. After all, it’s her body and she should get to decide which insulin delivery device to use. All the pumps are great so after an adjustment period, it will be smooth sailing…

right now we are waiting for her next appointment to meet with the team who handles the pump, I am very excited, because the numbers are settling down after the hospital stay she had to have. they figured out what has been wrong this would time! I am stoked for my daughter. my friend and i shared a mutual giggle the other day when she checked in with me on who and where my daughter was receiving care. her so and my daughter share the same doctor and same clinic now, so i now know what to expect and i am glad that i have a fantastic doctor and a close clinic and all seems to be well.

any more news? It’s been a few months since this last post, I was wondering how it’s going.