I don't even feel like writing! Bad diabetes week. First, I took Samantha to her primary care doctor to get her school physical updated for softball. The doctor obviously didn't approve of my decision to switch Samantha from a pediatric endocrinologist group to a nurse practitioner specializing in diabetes care. "A nurse?" she said, "They have to be with a doctor!" Well, this is a practice of nurse practitioners on their own, I said. Strike one in her book. "She can't oversee that insulin pump!" she said. Sam's A1C has been rising since we started the pump, but we're still trying to understand it. "The only thing I don't agree with her on is that she doesn't think Sam should take her Synthroid at night," I said. Strike two. "I take MINE at night!" the doctor said. "There's nothing wrong with it!!" Then I had to reveal that Sam had been started on captopril to prevent kidney damage because the nurse had seen protein in her urine -- it had shown up a few times. She takes and extremely small dose which I had talked to our clinical trial doctor about & he agrees with the decision for her to take it. "Hold on!" the doctor said & left the room, coming back in with a medical book. "Captopril is not approved for use in children," she said, looking straight at me. "Samantha, you're still a child." Strike three.

I've had it. The endocrinologist's office was absolutely terrible. We never got any help. Samantha got yelled at by the CDE -- out in the waiting room -- for not using her pump correctly (she believed). That was it. We didn't go back. I did some research, considered going to Indy or Cincinnati to find a decent doctor & then decided to give the NP a try - here in Louisville. Wouldn't it be nice to have someone in town to rely on? When we first met with her, I told her we basically needed to start at the beginning because we were still at ground zero even though we'd been struggling for a year. We received pump training over the phone from Animas. We learned mostly by mistake.

Why did I have to explain any of this to the primary care doc? But I wanted to. I told her the nurse has helped us a thousand times more than the doctor's office ever did. I told her Samantha was yelled at. I do my research. She doesn't know ME. And I don't need anymore pressure. I'm dealing with enough pressure every day.

Couple days later, Samantha got a cold. Her BG started rising. We thought it was the cold. It was 300-400 on Thursday, no matter what we did. Changed the inset, tried boluses. Friday morning it was still going up & Sam really started feeling terrible. I called our nurse. She said, "Try this, call me back in an hour." We did it, nothing changed. "Do I need to take her to the hospital?" I asked the nurse. "We can do this," she said. Try another thing, call her in an hour. She said she was going out to a movie but she had her cell phone & pager. Nothing worked. BG 570, moderate ketones. Samantha was slumped on the couch. "Try 15u by injection," the nurse said. "It's the pump. We tried everything we're supposed to. Disconnect it." Whoosh! Samantha felt better within the hour. She was back in the 300s and eating a snack. She was talking again. Our nurse called to check on her, texted instructions for Lantus. She checked with us again the next day & made sure we have an appointment this week.

Diabetes keeps trying to make me look dumb, which is at the top of my HATE list. Every time something is out of whack, we have to go through a list & eliminate possibilities until we reach the real culprit. ARGH! The doctor's office was easy to eliminate. When BG is dropping or rising, it's harder for me to sort things out. I need someone to rely on in those situations. Right now, it's a nurse.

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Tags: 1, Nurse, Type, care, diabetes, doctors, emergencies, medical, practitioner

Comment by Ann on January 29, 2012 at 9:56pm

Wow. What a rough time you've been going through! Kudos on your decision to use the NP. In the end, you have to do what's right for Samantha, whether the doctor agrees or not. It's your daughter's health, not the doctor's. And you sound like a great mother! I'm glad you have the NP to talk to when you need to. Keep at it, and trust your instincts about the professionals! :D

Comment by Gerri on January 29, 2012 at 11:26pm

Really appears that we have to run the gauntlet of bad medical experiences. Being humiliated, wrong info, inadequate info, being treated like a child are sadly par for the course. NP sounds good, though she should have told you to correct by injection immediately.

Comment by Emily B on January 29, 2012 at 11:37pm

So sorry to hear your struggles, advocating for their well being is what us mom's have to do but it can be so draining. Hang in there. We speak to my son's endo's NP 80% of the time. Endo just looks him over and plants her signature on the NP suggestions. I think pump trainers only teach you how to operate the pump and navigate the screens like showing you how you would dual wave bolus (in our case, extend bolus)but not why and when. If you haven't read through Pumping Insulin by John Walsh, lots here highly recommend it, it's a great book to have. It gives you confidence and knowledge to make adjustments on your own. Help you rely less on that 30 minutes you get every 3 months with the medical professionals. I set and change my son's basal rates completely myself, but I fortunately have the help of his Dexcom cgms that when I make small adjustments I can track it, but you can do that with more testing too or do the fasting things for checking basal rates. I don't always remember when my son has a elevated BSs that if we tried correcting thru the pump and its not working the next step is always suppose to be a correction thru injection. Even if the pump is delivering, a new site for the injection may absorb better and I find those sustained highs always take more insulin than a regular correction. T1 needs to be home to monitor in such cases. I felt dumbfounded (D has it lots ways of doing that) today by three days of beautifully in range numbers for some pretty usually high carb days, yet a few days prior things were as they usually are and he spent so many hours above his range (at night and at school) that when we finally could had to rage bolus to bring it down. Not near 15u, that's quite a correction. No fun. We narrowed it down to bad absorption. Changed pump site. Well hope things smooth out soon. My best, Emily.

Comment by acidrock23 on January 30, 2012 at 5:02am

That's a tough situation. I can sort of understand the doctor's tendency to look at numbers being "off" as "evidence" that the nurse is not helping but diabetes is so freaking complicated that I think a lot of the problem is getting support that is accessible enough. I have been fortunate and/ or oblivious enough to have avoided that but had a really cool PCP when I was endo-less for a while. I don't get a lot of warm fuzzies from the current doctor's nurse and their communication is too slow for me anyway as during our brief correspondence via email, I had already done what she suggested I do like 2 days before she suggested it. I also think that yelling is a really bad tactic for a younger person with diabetes, particularly if they are having problems w/ numbers. There's a lot of mysteries involved and I think that it's more productive to look at it like a science puzzle than a behavior "right and wrong" thing.

It's probably better to rely on a nurse/ medical people but Tu can offer quick answers with "checks and balances" provided by the community. Some people (e.g. Jen) have been posting detailed accounts of logs, food, days, ups and downs and, at least Jen seems to think she's made some progress? The "forums" might work better though, as there's more traffic? Good luck with everything!

Comment by Jacob's mom on January 30, 2012 at 5:17am

I'm behind you all the way, NP's are just as qualified and ussually way more empathic, you made the right call and her pediatrician probably knows nothing about diabetes, fire her to. diabetes is hard enough but when you are fighting with the people that should be giving you and her empathetic care, that is not what medical practice should be about, not about power or i know best but what is best for the patient i can only image how sam feels when being subject to these conversations, surround yourself with those that support and understand you forget the rest, we all get you. hand in there hun, we had a tough D week too, it feels good to vent here and know you are not alone, sending you all my best! amy

Comment by michele on January 30, 2012 at 5:25am
You're not stupid, you're doing what's best for your daughter and coping with an unpredictable disease. FWIW, my son is on the pump and whenever his BG gets above 350 I have to give him a shot to get him back down. When he's that high, no amount of insulin via pump seems to work, but a shot does. Go figure.
Comment by samsmom on January 30, 2012 at 7:50am

Thank you, thank you, everybody! I feel so drained, I can't imagine how Samantha feels. I read in Think Like a Pancreas that we should abandon the pump & give an injection, but I was a little scared because we had been telling the pump to bolus & the last amount we gave was 15u. That's one reason we kept waiting an hour, I think. Sam is still not wearing her pump & I don't think she wants to go back to it anytime soon. I'm going to look into the untethered regimen to see if she wants to try it, but she may stick with her pens for a while. Her numbers were better with that & she feels more free, so I told her it's fine. She's worried about all the $$ we spent on the pump, but I told her now she has it as an option. We just have to learn how to control that pump. Going into DKA because something's off is a hard way to learn things.

Comment by Gerri on January 30, 2012 at 8:03am

Good plan to be cautious with insulin on board. Just wish with BG that high, she would have suggested an injection sooner to have spared sweet Samantha & you dealing with such high BG.

Many people do very well with MDI. I've never wanted a pump for several reasons. The main one being scar tissue, closely followed by fear of pump malfunctions. Unacceptable to me to have serious problems resulting from a device. Honestly, dealing with all the pump paraphernalia never seemed liberating. Understand how Samantha feels.

Comment by michele on January 30, 2012 at 8:23am

We switched to the pump about 6 months after dx, and it was just like starting over again. It took about 3 months to get everything dialed in, and he ended up with a couple of different basal rates during the day, some of which were next to nothing. We switched because we needed to have those different rates; he would go really low during the day, but be high at night and any adjustments we made to fix one issue made the second one worse. If MDI works for you guys, and she's not comfortable with the pump, then by all means stick to MDI. She may change her mind later and then you've got the supplies ;)

Comment by brokenpole on January 30, 2012 at 2:58pm

samsmom,

I think you are a smart and very knowledgable mom. You had the presense of mind to get her away from that doctor and into the NP.

As for the pump, like you said, it is there if she wants to try it. I have been offered the pump but I am more comfortable with my injections. Which ever way keeps her in control.

Keep up the good work and always remember...YOU CAN DO IT!

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