Definitely trying to kill me….

Since Abbi’s diagnosis we have always maintained an open and honest household.  She has known that even though I try to keep our food low carb, even on the verge of keto, if there is anything she really wants all she has to do is ask for it.  Everything has gone fairly smooth for the past 2 and half years… like eerily smooth.  I kept reading on Facebook and other groups about how other teenage and preteen T1D kids were hoarding food, putting in false numbers for their calibrations, and even just guessing when it came to putting in carb counts for their PDM.  I was like nope, not my kid, she knows she can tell me anything, ask for anything, and we have it covered. 

Summer went great, I mean she snuck food every once and a while but always owned up to it. We didn’t have any problems over the summer for the most part….

Insert MIDDLE SCHOOL HERE….

Let me just start by saying Middle School has been the devil since the start.  My child has changed in every aspect.  She hides her food, her feelings, her calibrations, everything.  We have tried to handle it without threatening her but at this point what else do you do?   She thinks she knows more than we know and she tries to dose herself which results in really high numbers then crashing down extremely low.  When I say extremely low, I mean in the 30’s.   So, once I caught on to that I started digging around the PDM app (for those of you not lucky enough to have an Omnipod Dash, it has a parent app that allows you to see the history).  Just wow!  She was giving herself all kinds of temp basals and different doses.  So, then I went into her phone and discovered she was using the phone during school. 

No, not for texting us when she was having a problem with her blood sugar or with carb counts.   She was texting her friends all day long.  Playing a game that she had on the phone and then I saw that she was taking bathroom selfies…. yep you read that right… bathroom freaking selfies!!!  I was furious.  I fought so hard for her to even have this phone in school.  For her to have the independence in school that she was so frivolously taking advantage of.   I fired her doctor and was driving her an extra 30 minutes the opposite direction remember just to get her someone that was more progressive for God’s sake!  I was so angry. 

So, I brought her home after school and decided I was going to give her a chance to explain herself.  Lies…that is what she gave me complete and utter lies.  Excuses after excuses.  I was actually quite calm even though I knew she was feeding me a load of crap.  I calmly took her phone and deleted every contact in it except her Dad, myself, her grandmother, and her grandmother’s cell phone.   I activated the screen time from iPhone.  This allowed the phone to be basically nothing further than a Dexcom receiver during school hours with the exception of texting those people in the “safe” list.  “Julie, how did you do that?”  Well, let me explain.  I have always said my kids would not have a cell phone period until they were 16.  It was the age I was able to get a cell phone and I don’t think kids needs a cell phone before they have a job.  If your views are different that’s great… mine however are not.

So, trust me when I had to get Abbi a cell phone for her Dexcom usage a small part of me died.  I knew I was going to have to cave on something I felt very strongly about.   So, when she decided to tell me lies about it, locking it down was the best thing ever for me.. secretly.   Well, I guess since she decided she had nothing to lose, she let loose on everything.  Apparently, she had been sneaking food at school and basically overdosing insulin for it.  She had been hoarding food in her room and showed me the hiding spots and Dad found some of the other ones.  When I tell you inside my head exploded and I screamed… outside though… beautifully calm. 

I have learned that yelling and getting upset with her doesn’t do anything but cause her to hide things even more.  So, WE sat down and I asked her where all of this was coming from?  She cried and said she just wanted to be normal.  NORMAL.  I felt my heart burst.  My poor girl.  We try so hard to make sure everything in her life was as normal as possible but the simplest thing as food was causing her to feel like she was an outcast.  Now did this heartbreak and honesty wipe out everything that she had done?  Absolutely not, it just changed the way I handled it. 

Even though we are trying to teach Abbi independence, she is a long way from being able to dose all by herself.  She still needs guidance and this was the main problem.  She was giving herself way too much for what she was “sneaking” at school.  It was causing her to go dangerously low.  So, I told her she had to run every decision by us first period from now on until she could be trusted.  And the kicker for her, was that I told her if I caught her doing this again, she would go back to the nurse for all dosing decisions from then out.  You have to understand, at home, we do eat extremely low carb, but if she asks for it, she usually gets it.  Same goes for school… all she had to do was send me a quick text message.  “Hey Mom, can I have a bag of Cheetos?”.  I might have done a big sigh, but I would have looked up the carb count, adjusted what I would give her and sent her back a “Yep, this is what you need to do!”.  I completely understand that Abbi is just a kid and I want her to feel as normal as humanly possible without jeopardizing her health.  My hope and my goal are that I am teaching her well enough habits that she will choose the good stuff over the bad stuff as she gets older.  (Although trust me, I know that kids will be kids and they are going to test their boundaries). 

So far, this has worked, but we will update this as time goes….

Fight for what you want…

So far, we have gone through Abbie’s story from the beginning.  I explained our “denial” phase and how the next year seemed like the best and worst year ever.  I have told you about our trials with her old endocrinologist.  You been told about our fight with the insurance for her pump and her Dexcom.  And then how we fought to advocate for our daughter at her school.  I don’t want you to get the wrong impression, we LOVE Abbie’s school (well her Elementary school, we don’t know her Middle School yet).   However, we wanted Abbie to know that she needed to fight for what believed in and what she needed. 

As I told you she started out on a Tslim X2 back in October of 2018 and loved it.  She chose the pump, mostly based on features and because of the ease of the face.  It looks a lot like a phone.  I was caught between the Tslim and the Omnipod but I was not the one that had to wear it and would ultimately be using it on a daily basis, so we let her make the final decision.  She wore it with pride and the only time it caused her any kind of grief was at gymnastics when she had to unhook from it for an hour or when someone would ask about the tubing while she was waiting for her class to start. 

This was from October all the way until summer hit.   And that is when the major challenges set it.  You see my daughters LIVE in the water during the summer.  She discovered she had to unhook from the pump anytime she went near the water, which was every day.  Then she could only be unhooked for an hour at a time before she had to hook back up to it.  This began to get bothersome around the end of April just when the weather got warm enough to swim.  I think the final straw for her was when she went to change her site one day and the infusion needle was bent but we were not aware.   It caused her such excruciating pain.  From that moment on she had such anxiety over doing site changes it was an ordeal each time. 

I think it was around the middle of May that Abbie came up to me and told me she wanted to go back on shots.  She said she was tired of being on a pump and having to unplug for swimming and other activities.  I was okay with this but I knew it was not the only reason why she was saying these things.  I knew it was the anxiety over the infusion changes that had her willing to go back to shots.  So, I went looking again at other options even though I would be happy to let her be MDI if that is what she really wanted. 

I immediately went back to the original option of Omnipod and got her a trial pod.   She LOVED it.  She liked the freedom of no tubes and she looked up the YouTube videos of the insertion and it looked so much easier to do.   Now it was up to me to see how we could make this happen.  As most of you know, when you choose a pump you have them for 4 years period, unless you pay out of pocket.  I called her CDE and she got me in touch with their Omnipod Rep that very day.   He told me that Omnipod works a little different and that if the insurance would be willing to switch the infusion sets over to Pods then all I would have to pay for out of pocket would be the Personal Diabetes Manager.  I was pleasantly surprised to learn I would only need to pay $199 out of pocket for that and even that I could break up into monthly payments if I needed to.  So, a little over 2 weeks later we had her new Omnipod system in hand and were off to training.  

It has been about 2 months since then and we have even upgraded to their new Dash system since that one and I have to say Abbie is loving it.   She has tried every site available to her and she hasn’t complained once.  She loves the freedom that she can just hop in a pool and not have to worry about it. 

This was just one more way I learned we as T1D parents have to fight for our kids… and another way Abbie had to learn to stand up for herself.  She really had to look at what was important to her, figure out what she could live with and without, and decide if she wanted to stick with something or try something new. 

So, folks, we are about 6 months into this blog and I have to say it has been a welcome outlet that I hoped it would be.   I am hoping to have some new recipes coming in the next few days.   I am sorry the posts have been few over the past couple weeks but we are working on remodeling our bathroom and it has been taking a lot of my time.   As of this post, you are up to date!  Woohoo!  So, from here, I will be posting tidbits of things that I see are important, news facts, things that happen in our life etc. 

If you have any suggestions for the blog… ideas on content or a post idea or something I need to look into, please send me a comment and I will be more than happy to look into it!  Thanks for keeping up with us so far! 

What about school and 504s or IEP???

On February 27th, 2017 Abbie went back to school like nothing had ever changed for her.  On the back end though, her Dad and I had a big meeting with her school principal, assistant principal and nurse.  Was this her 504 meeting?  Nope, we knew nothing about a 504 plan at that time and to be honest we really didn’t need it.  Abbie was only going to the nurse before lunch and once she was completely off insulin 2 months later, she didn’t go at all unless she felt like she needed to.   This continued through her next school year because, well, again she was on no insulin until she was out of school so there was just no need.  We had another meeting at the beginning of her 5th grade school year, but again this was not a 504 meeting, we still had no idea about that and no one ever mentioned it to us.  This meeting was just to tell them what had changed and how often she needed to speak to the nurse.   For the first two months of the new school year, Abbie would get her Levemir (long lasting insulin) at home, and would need to take her Apidra (fast acting – bolus) insulin before lunch or for corrections at school. 

Everything went smooth until she got on the pump and got her CGM in November.  I remember there was a permission slip sent in for a field trip and a note.  The note read something like this:

Dear Mr. and Mrs. Eger,

There are currently 5 chaperone slots available and I have saved one for either of you.  I have spoken with the school nurse and she will not be able to attend the field trip that day.  We have also spoken with the district and they will not be able to provide someone to go, so one of you will have to attend the field trip with Abigail in order for her to attend.  Please let me know which of you will be attending and if Abigail has permission to go. 

Wait, what?  First off, she had been on her pump for over a month and basically the pump did everything for her.  All she needed to do was text me or call me and I could walk her through it.  Second off, both my husband and I work, why should we have to take off work to go on a field trip?  I thought something didn’t sound right.  So, I started doing some digging.  Insert the 504 here. 

Anyone who is not familiar with the American Disability Act and how it pertains to persons with Diabetes should definitely familiarize themselves.  Also visit: Special Considerations for School .  This page will give you tons of information about 504 plans, information about attendance, college, child protective services, emergency lockdown procedures and more! 

But back to the story and then I will give some more information.   After calling around, I was told that according to ADA laws they had to provide Abbie with someone who was trained in her T1D care on a field trip and that they could not prevent her from going just because her Dad or I could not chaperone.  The nice lady I spoke with at the ADA did tell me I needed to get a 504 Plan in place so that I had grounds to stand on in the future, but for now they would back me up if necessary.  I honestly didn’t want that fight right this second, as this was somewhere we had to get “acceptance” for my kids to go to school (they go out of district) and I did not want to do anything to jeopardize that.  So, we figured we would play nice, get the 504 plan in place and then we would have something to play ball with.  Andy ended up having some vacation he needed to use anyway, so he went on her field trip, while I drafted a 504 plan and we set a meeting. 

Apparently, Abbie was the first 504 they had ever had.  They had IEP’s but not any 504’s.  They had to scramble to get a coordinator together and of course they just used the IEP coordinator which was fine.  She called me and told me that the Superintendent wanted Abbie to take a battery of psychological and educational testing before the meeting to see where she stood at that moment…. wait, what?? (See a pattern here, huh?).

I refused.  Abbie made honor roll.  She had no problems in school whatsoever and did not need any type of educational testing.  The research I did stated that psychological and educational testing is done for IEP plans not for 504 accommodations which I had to reiterate.  They called me a day before our meeting and informed me that the Superintendent decided to honor my wishes and not make Abbie do the testing; umm, yea I know because it would have never happened.  Fast forward a couple of days to the meeting, we sat down with the same people from the other meetings plus the IEP, er, 504 Coordinator, and they went over my document which I will attach.  My first 504 was very long and drawn out, I have learned a lot since then and found others that flow much better.  But it got the point across.  It allowed her to use the bathroom when she needed, drink water in class if needed, eat a snack if needed, have her cell phone on her as a medical device, have a nurse present with her on field trips if necessary, and special accommodations for testing. 

The school year went very smoothly after that.  Only one teacher threatened to take her phone from her when she peaked at her blood sugar…yea that was nipped very quickly.  And one other substitute told her she couldn’t go to the bathroom, my daughter politely told her she had a medical condition and she could take it up with the nurse or principal but she was going to bathroom; got up and walked out.  J 

The first document attached is Abbie’s original LONG and DRAWN out 504 plan.  I think it was like 12 pages, ridiculous.  But it had good information in it. 

The second document, I cannot take credit for.  I have told you I am an avid listener to the Juicebox Podcast.  He has posted Arden’s (his daughter) 504 plan on his blog since the beginning.  This is a rendition of his.  You can find all of his 504 Plans at: Arden’s Day .

I think we’re alone now…

You know when Abbie was first diagnosed, I think I stated my husband and I knew absolutely nothing further than what the hospital told us, what the internet could briefly inform us, and what little I remember from health class about Type 1 Diabetes.  Don’t get me wrong the internet is full of fantastic information if you know where to find it but it can also be a very, very, very scary place for a newly diagnosed Type 1 Diabetic and/or their caregiver.  If you just type in diabetes and complications you will get disturbing images of missing feet, abscesses, among other nasty little things.  If you rephrase and type in Type 1 Diabetes complications, the images stay the same, but added in will be words like kidney failure, retinopathy, neuropathy,  liver damage, and heart problems.  You see things about how low blood sugars can kill you and how high blood sugars cause complications over time.  Well what the hell?

So basically between what I learned at the hospital and what I read on the internet the first few days was that my daughter had an incurable disease that would alter everything about her life.  On the plus side there was a medication I could give her to manage it and make her life mostly normal.  However, on the flip side, if I gave her too much of this medication I could kill her or if I didn’t give her enough of the medication I could cause long term side effects and kill her.  Wait, what?

One positive came out of Abbie having such a long honeymoon phase.  It gave me time to research, learn, and research some more.  I learned a lot about insulin in that time, a lot about carb counting, a lot about the reality and necessity that comes from being afraid of insulin.  I will say when it came time for her to be on a long lasting and fast acting insulin, I still panicked and was still very conservative at first.  I followed the doctor’s orders to the letter until, well until I didn’t.  As you have read until this point, I reached a snapping point where I knew that I could not wait on someone that only saw my kid every 3 months to make a decision about her care when I knew I could look at the data and make that decision little by little right now. 

When she went on a pump in October and her Dex in November I found the Facebook communities.  There are so many of them.  If you are newly diagnosed and you haven’t found them, please go looking.  There is T1D Mod Squad, You know you’re a Type 1 when, specialized Omnipod and Dexcom groups, Tandem groups…all of which have a plethora of information.  These groups are so helpful and full of people that genuinely care and know exactly what you are going through.  They welcomed me with open arms and help any way they can. 

So then I felt a little less alone, and my husband felt a little less alone because he joined those groups soon after.  I think it was around January or February of this year that I keep seeing people posting about a podcast in the groups that was fantastic and a blog that was extremely helpful.  I meant to go look at it then but life happened and I just didn’t have the chance.  It was around March when I saw the name come up again in a group and I found www.Ardensday.com which in turn led me to the Juicebox Podcasts.  I think as of today I am on episode 125 but Scott had currently uploaded episode 247.  I listen religiously when I am putting away groceries, cleaning the house, or driving to and from work.  He is a Dad just like you or me, his daughter was diagnosed when she was 2 years old.   He started out writing the blog and then went on to do the podcasts.  He is so informative, so caring, and just has so much to give. 

Scott Benner taught me about being #boldwithinsulin and how to #bumpandnudge the numbers instead of overcorrecting a low to get a skyrocketing high then overcorrecting that high to get another low.   Basically how to stop the rollercoaster.   He reinforced things that I had already been doing for months and allowed me to look at my husband and say, “see I’m not crazy (well maybe I am but in a good way), someone else is just as aggressive too!”.  We are taught to be afraid of insulin which keeps us in this cycle that higher blood sugars are okay but the higher blood sugars cause long term complications that will kill my kid too and I am not okay with that, I was never okay with that.  I stopped being afraid of insulin and learned to have a healthy respect for it but knew that it was there to help me if I researched the data and learned how to use it properly.

Another fantastic website and app is Beyond Type 1.   The website gives up to date news information and the app is a lot like Facebook but for anyone with T1D or their caregiver.  You can post about your life, your problems, your blog, your happy moments, your sad moments, or anything in between.  It’s a place to just connect and feel like you belong. 

Two books that have been like my T1D bibles are “Think Like a Pancreas” by Gary Scheiner and “Sugar Surfing” by Stephen Ponder.  These books have a lot of great information and can change the way you think about things.

Most of all, personally I think you need to just trust you.  You are with your kids 24 hours a day, 7 days a week, 365 days a year. You know how they act, how they eat, how they exercise.  You know how they react to certain situations and how they act on a normal basis.  You know their normal.  I know that when Abbie is happy, smiling, getting along with her sister and the entire family, wanting to play, she is in a normal range.   When she is argumentative, has an attitude, tired, grumpy, she is more than likely low.  And when she is hyper, complaining of a headache and a stomachache, she is more than likely creeping up higher than I like. 

And if you are reading this and you are the one with T1D you definitely know yourself better than anyone else… trust yourself!  That is the moral of it all for the caregiver or the person with the disease.  Trust yourself, trust your gut, trust the reaction, and trust the responses.  

Until next time….

Totally figuring it out…. not…

Let me tell you something about T1D….

The moment you think you have everything under control, everything is tightly reined in, numbers are looking fantastic, something will change.  Whether the air shifts in the atmosphere, the stars are no longer aligned, your 11-year-old starts her period, or decides she wants to hoard her low snacks, just know always be prepared to change it somehow and don’t let it get you down when it happens, because it will happen. 

Christmas went by, January went by and we had everything under control, everything tightly reigned in only needing to do small adjustments here and there.  I had gotten very comfortable with changing Abbie’s settings myself and I was very careful in doing so. I made sure I only changed one thing at a time and by no more than 10% so that I could keep track of what I changed and what worked.  At this point, I never changed her target number, it remained at 150 and her correction factor had stayed the same at 90 mainly because I didn’t really know how these two numbers worked at least enough to do anything with them.

In February, we noticed her numbers started to creep up on us, mainly at night.  This normally signifies a growth spurt, so we ran some temp basals on her pump and it worked for a couple hours.  Then she would creep up in the 200’s, then 250’s and getting her back down below 150 to our comfort zone of 110-120 was very difficult.  I knew it was because of the correction factor and the target, but again didn’t know enough about them to change them. So, I tried to start reacting sooner to the numbers and arrows.  Once I saw 140 with a diagonal up arrow we started a temp basal, and gave a small bolus.  Hoorah! This worked, not quite as well as what I figured out months later, but well enough for someone who had really only been doing this for 4 months. 

In March, I received a call from Dexcom asking if Abbie and I would be interested in doing a Podcast for their #warriorup program.  They asked me some questions about Abbie’s diagnosis and some other questions about the way we ate and how we liked her G5 and then we were offered an opportunity to come to Nashville later that month to record the Podcast with @EricPaslay.  So, the end of the month rolled around, and Abbie and I were off to Nashville.  Now remember, we ate very low carb at home, but I decided while we were in Nashville, she could eat however she wanted.  Our first real day there, I took her to the zoo and the Country Music Hall of Fame.  The kid had to turn her pump off and eat Dip-n-Dots, drink a Coke, and have like 3 fruit snacks just to stay above 80.  Later that night after we had dinner with the Paslay’s and the other Warriors, we were walking back to the hotel and she was rising with an up arrow, then double up arrows.  Ok, I thought, she just needs an extra bolus and a temp basal.  I had swagged (guessed the carbs) dinner, and apparently swagged wrong.  But the numbers didn’t come down.  Up to 300, so at that point I figured it was a bad site.  We changed it, I gave her a bolus and she came down to around 210 for about an hour.  She hovered there until about 3am.  Then she went back up to 280.

For the next 3 days, Abbie ran at 150% temp basal and we would still have to give extra boluses. I had no idea what was going on, but I knew it wasn’t the site and I knew it wasn’t the insulin. But I also knew it wasn’t anything I could fix in Nashville, that unfortunately it was going to have to wait until I got home. So, with those settings it kept her around 140-160 on average, higher than I liked but better than the 250 she was running. When we got back home, I think we had been home for about 2 hours when the Dexcom went off with an urgent low alarm and Sugar Mate had sent me her location and was calling my phone. I remember looking at her and saying there is no way, you were just 160, go check by blood. The Dex was reading at 51, she stuck her finger and it said 49! And just like that it was over, thankfully I had not dialed in any permanent numbers, so it was easy enough to turn off the temp basal and give her some juice.

Hormones are a beast….

Seven days later, while at a VMI vs Hampton University Lacrosse game, my little girl turned into a woman.  And all those high numbers made sense.  During her cycle her numbers were beautiful.  Actually, steadier than ever, no lows, no highs right on the target where we wanted her to be between 90-120 all day and night. 

So, a few days later, maybe about a week later we had another Endo appointment and again we were seeing the NP and not our regular Endo…starting to see a pattern here huh?  Much to my surprise, I LOVED this NP.  She was attentive, listened, and for the first time in two years did not scold me for everything we did.  Actually, the first thing she said when she walked in the room was, “Well, I know you have to come here every three months to get your prescriptions and you A1C, but other than that I don’t know why you’re here, you guys are killing it!”.   She then told me that her A1C was at a 6.5%.  So, in 3 months we had brought her down from a 7.3% to a 6.5%, even with the highs and puberty and growth spurts.  I finally got my questions answered about target numbers and correction factors and discovered I was scared of them for nothing but to lower them slowly so I didn’t have a ton of lows.  We also talked about making Abbie fully independent at school, since she had shown a ton of responsibility lately.  She was no longer sneaking or hoarding food as she now understood the consequences and her and I were texting back and forth throughout the day about treatment decisions. However, she still had to go to the nurse to be able to do anything which required a lot of missed class time. 

Unfortunately, she said she couldn’t change Abbie’s DMMP (her Medical Plan that is required for school), that her primary Endo would need to do that but she would notate that she thought it was a great idea and that it should be done before she entered Middle School if not sooner.  She also notated that I had been making changes in settings on my own and was very competent to do so.   All around I was very excited to see her again. Oh, how one phone call conversation about 3 weeks later would change all of that….  

Coincidentally, this was about the time I discovered the Arden’s Day Blog and the JuiceBox Podcast. Let me tell you, if you are newly diagnosed or even if you have been diagnosed for a while, this blog and the podcast has a plethora of information. It has been a Godsend for me and allowed me to validate what I do on a daily basis. It has allowed me to show my husband that I am not crazy and not the only person alive that is not scared of insulin, that is aggressive or #boldwithinsulin as Scott Benner calls it. So go check out the Podcast and the blog at Ardenday.

Next up…. What do you do when you have reached your breaking point with a doctor that does not understand what your child needs or what you want for you child?

Finally our Dexcom G5!

About 3 weeks after we got started on our Tandem Tslim X2, I got a call from Edgepark that Abbie’s Dexcom had finally been approved and that it would ship out ASAP! Overjoyed was not even the word for it.  Daily conversations with our insurance, hold times, transfers to higher ups in the insurance, conference calls with the doctor and insurance, and of course some social media slams to boot…they were finally over!  Edgepark was shipping everything 2-day Air so we would have everything by November 1st.  I immediately called our CDE so we could set up training (although I had read so much I thought this was redundant and really didn’t see the point, but I did the right thing).  She told me they were booked out till December…ummm nope.  I remember telling her the equipment would be there on November 1st so we would be at her office when it opened at 7:30am on November 2nd and that we had waited long enough.  I knew none of it was her fault and I later apologized but I was frustrated and just wanted Abbie to have all of the best equipment functioning. 

November 2nd rolled around and I got Abbie up around 5:30am for the hour and half drive to the doctor’s office.  We got there and I had read so much of the manual and watched so many videos we were in and out in about 30 minutes.  Easy-peasy.  Abbie was so happy.  She knew that this would drastically decrease her finger sticks (hopefully around 2 a day unless something was off) and she no longer had to take shots because of the pump…her T1D life was looking way better. The last month on the pump had been wonderful, most of her settings were working beautifully.  We didn’t have that adjustment period like everyone warned us about.  Now I was interested to see the real numbers, the ones we had been missing in between.  The ones that showed me what food really did to her body and how her insulin reacted to it. 

I learned over the next month that Abbie would wake up around 110, beautiful right?  She would eat breakfast, which normally consisted eggs, bacon, and a thin bagel…sometimes cereal but very rarely.  We learned that on school mornings by 8:30 she would skyrocket to around 280-300 and come back down on her own by lunch which was at 12:00.  It didn’t matter what she had for breakfast it did the same thing.  We also learned this didn’t happen on the weekends only on school days, weird right?  So, I put in a call to the CDE because well I wasn’t comfortable with changing settings yet.  I waited about 4-5 days and never heard from her so I sent an email.   She responded 2 days later and we changed her carb ratios for breakfast.  Well that worked slightly but then crashed her on the weekends.  I put in another call, but the voicemail said she would be on vacation till the first of the year and unless it was an emergency to leave a message or gave me another number to try.  I don’t blame the CDE, the office is extremely busy and overwhelmed I think which is why there is such a long wait between phone calls, but I knew right then I had to learn how to do somethings on my own. 

So, I went reading the Tslim book again and learned how to make a separate profile for the weekend and put the old numbers back in there since they were always good.  That way on Friday afternoon she could switch to that profile and during Christmas break.  Then I did a lot of research on Basal Rates and Carb Ratios and what the CGM should look like for both if they need to be adjusted.  Let me just say it is amazing what you can find on the internet from REPUTABLE sites and on Facebook T1D groups.  They will help you with everything!  So, I learned her breakfast problem was a little bit of both, basal rate and carb ratio.   Basically, her basal rate for the morning started at 7:00am because that is when she got up, but it needed to start before that on school mornings, and her carb ratio needed to be dropped little by little until we got it right.  Let me tell you it has taken a while (we finally got it in March of this year) to get it right (and I am sure it will change again), but we went from a basal rate of .22u/hour starting at 7:00am and a carb ratio of 1u:25g and now we are at  .40u/hour starting at 5:00am until 11:00am and a carb ratio of 1u/6g.  She doesn’t crash and her numbers stay beautifully without temp basal rates or boluses in between on most days.

We got through Christmas without any kind of extreme events or major highs or lows.   The Dexcom G5 was teaching us so much that we never would have learned without it.  The new year rolled around and it was finally time for her next Endo appointment.  We were not seeing her normal Endo this time we were seeing a Nurse Practitioner, which I was hoping would be better, maybe for once I wouldn’t be scolded.   At this point her average numbers were around 150mg-160mg and I was confident her A1C had come down somewhat.  Remember, last appointment 3 months ago it was 8.8%.  Well the nurse informed us at this appointment while we were waiting on the NP, that her A1C was now 7.3%! Ok, we were getting there.  So, the NP came in and I asked her about the morning breakfast concern and asked if we could lower her target number.  I was told a flat no on the target number and was told that as long as Abbie comes down on her own from breakfast there is not an issue, that breakfast is hard for all T1D patients. 

It was in that moment I decided my research was going to have be my guide and it was time I stopped relying on the doctors and the 3-month appointments to make the adjustments.  It was time we went to the appointments just to get her A1C checked, to make sure she was healthy, to get her prescriptions, and call it a day…unless there was just something I didn’t understand or there was an emergency.  And I am happy to say, I have only called the on-call number twice since then and the last time was my final straw with the practice that caused me to find a new one… but more on that in another post….

Level With Me Podcast with Eric Paslay

So back in March, Abbie and I had the pleasure of doing a Podcast with Eric Paslay that was sponsored by Dexcom. It was a very cool experience. The “crew” came to our home town first and spent the day. They went to Abbie’s school, did a little grocery shopping with me, and then even stayed for dinner! They asked us all sorts of questions and just got to know us as a family. I was a little nervous at first but honestly it was a very relaxing experience and they were very good with the girls.

Then about 3 weeks later off Abbie and I went to Nashville, TN to spent 4 days recording a Podcast about Type 1 Diabetes. We met other T1D Warriors there and Abbie was able to see that people are thriving with this autoimmune disease. Abbie and I did some sightseeing, we visited the zoo and the Country Music Hall of Fame. Abbie also got some new boots (pictured below!). Eric and his wife Natalie had dinner with all us one night and they were absolutely wonderful. Such gracious hosts and they were so down to earth.

The next day we went to the Blackbird Recording Studios and spent about an hour recording the #Levelwithme Episode 3 Podcast with Eric. It was very eye opening and a great experience to just be able to speak with someone who has T1D themselves but also can understand from an adult perspective how this effects every aspect of your life. But also how you learn to make it a learning experience and even a positive experience if you can.

Check it out! The link is listed below where you can listen on iTunes or wherever podcasts are streamed. Make sure to subscribe and listen to them all!

https://podcasts.apple.com/us/podcast/my-kids-will-never-be-bullied/id1464008223?i=1000440489366

Pumps, Continuous Glucose Monitors (CGM), and Insurance Companies…ugh!

I remember Abbie asking about not taking so many shots at her Endo appointment in July of 2018.  He said we could talk to our CDE about pump options and hopefully by the next appointment have a pump ordered and be in training.  So we went next door to the Diabetes Education Center and we were shown three different pumps our insurance would cover as well as two different continuous glucose monitors (CGMs).  Let me tell you  this was a lot of information in a short period of time.  We were shown the OmniPod, the Tandem Tslim X2, and the Medtronic 670G with the Guardian CGM as well as the Dexcom G5 CGM and the Libre Freestyle CGM. 

We were stuck between the OmniPod and the Tslim for the functionality and user friendliness as well as the Dexcom G5 for the CGM.  We took all of their information home to read over and were told the sooner we could make a decision the better because it would probably take our insurance 2 months or more to get an approval and training was booked out until October.  Abbie was sent home with a “trial” infusion set of the Tslim in her arm to wear for 3 days to give her an idea of what it felt it like to insert one and wear one.  Over the next week we read over the information together and ultimately settled on the Tslim because of the looks, the functionality, user friendliness, and the compatibility with the Dexcom.  By the end of July I had called the CDE and told her which pump and CGM we had opted for and filled out all the necessary paperwork.

The pump process was fairly simple once we found out we couldn’t go directly through Tandem and had to go through a third party supplier called EdgePark. I was a little concerned because most people have issues with Edgepark, but honestly, to this day I have had no issues with them and their customer service has been great with me.  Edgepark said we would receive the pump probably by the middle of September and our training was scheduled for October 2nd, so I was okay with that.  We only had 30 days from time we received the pump to make sure it was the one for us, so I wanted to make sure we had some time to use it. 

Now on to the CGM process.  To me a CGM is WAY more important than a pump and should be given when a person leaves the hospital.  However, apparently an insurance company does not see it that way.  Dexcom told us, like Tandem did, that we would need to go through a third party provider and it was of course EdgePark.  I made sure Edgepark had all of the necessary information including the prescription, logs, doctor information and anything else they would need for the insurance.  About a week later, they called and said Abbie had been denied and that the doctor would be allowed a peer to peer review or I could start an appeal.  When I called Anthem asking more questions, I was informed that my daughter did not have enough lows to justify a CGM and that they needed proof that she was having lows below 50 in the last 3 months!  50 I thought, 50?  We had worked so hard with so many finger sticks to make sure she didn’t fall that low and now we were being chastised because of it.  I felt an anger that I couldn’t hardly contain. 

Over the next 2 months everything that could go wrong did.  The review process has to be done in a certain amount of time.  When I tried to contact her primary Endo, he was out of the country until way after the time was up and Anthem did not want to extend the review for any reason.   I remember getting on the phone with Abbie’s Anthem nurse specialist and just breaking down and crying, explaining my case.  She made some calls and got them to approve to hold off the review until after he returned from out of the country.  Also, around the middle of August I got a big package in the mail, guess what it was?  Yep, the Tslim. 

So, I called the CDE hoping to get into training a little bit sooner but she had nothing until October 2nd.  So here we were with a pump that was going to be out of the return policy before we even got to use it. But ok, whatever, I thought we had done enough research we would be ok with this pump.  Abbie loved it and it was her decision.

Now, I am not sure how familiar you guys are with Tslim, but it can only be used with Novolog or Humalog and I knew my insurance was going to give me a fit about that insulin because they had tried when Abbie was first put on fast-acting back in June, which is why we were on Apidra.  So I had gotten that process started at the beginning of August to make sure by October it was settled. 

Periodically I would call my pharmacy to make sure they had the prescription and they did they were just waiting on the pre-authorization and the approval from the insurance.  I would then call the doctor’s office to make sure the pre-authorization was done, which it had been.  Fast forward to about 2 weeks before the pump training and I still had not received a call from the pharmacy that the prescription was ready, so I called.  Now they informed me that the insurance denied me because they were saying it was an overdose of insulin.  Well I had had enough!  Something came over me and the poor person that answered the phone at Anthem that day got drew the short end of the stick.  I ended up on a 4 way conference call with the customer service agent, my Endo, and the pharmacist.  I had a full 6 month prescription ready in the next hour.  Now if only I could get the Dexcom approved that easily… we were still working on that. 

The day of pump training finally arrived and I had read the manual from front to back with Abbie.  We walked into the CDE’s office and we were very prepared.  She told us she had set aside 2-3 hours for training.  We figured out her basal rates, carb ratios, target blood sugar, and correction factor.  We set up one program for now and she showed us how to load a cartridge and put on the infusion set.  Our training took about an hour.  I remember our CDE going to get the Endo before we left because she said he wanted to discuss a couple of thing with me.  A few minutes later in walked the doctor with our food logs.  “Mrs. Eger, you are still not feeding Abbie enough carbs for healthy development.” I just looked and smiled; I refused at that moment to argue and asked if he had anything else.  I asked him about the target numbers he gave at 150 for the daytime and 180 at night as they seemed high to me.  He informed me that for her age until she was probably in high school or older, she needed to maintain these numbers to thrive and to not be on dangerous levels.  Ok, I thought, what do I know.

So off we went, home with our new pump.  Anxiously waiting on our Dexcom.  I knew once we got that piece of equipment combined with the pump, everything would change for the better.  Just for reference, at this appointment Abbie’s A1C was 8.8.

MDI (Multiple Daily Injections) and normal life…

So, I will start of by saying this will be the point of the blog where I am going to give a warning.  What transpires after this worked for me, worked for Abbie, worked for my husband and our entire family.  It may not work for you at least not in the same manner.  I am not a medical doctor and absolutely do not claim to know all.  We are still learning everyday as T1D changes almost on a daily basis.  With that being said…onward!

As I stated school was already out for the summer and we had made all of these plans like going to the beach for a week and we had a cruise planned.  I had read horror stories of families that were afraid to leave their homes with their T1D children for fear of them going low in the car or away from the house but I refused to be that Mom or do that to Abbie or Jamee.  I am absolutely not saying that if you were that Mom or Dad, you were doing anything wrong, that is what worked for you and helped you get over your fear.  For us, we needed to continue on with normal life and see that our daughter was not broken, that she could survive, thrive, and move on. 

So, we went home and re-adjusted Abbie’s diet to what the doctor had suggested since he had told me I was not feeding her enough carbs.  She started getting around 60+ at every meal.  It was extremely difficult I will say that.  Breakfast and lunch were easier because it was easier to incorporate bread but dinner was a disaster.  She was so full from the main course I made, trying to get her to eat approximately 40g of side dishes was a task.

At this point we were still on the multiple injections which were totaling about 6-8 a day and she was sticking her finger almost double that because I was curious how food was interacting with her system.    Even without the modern-day technology of a CGM I noticed after a carb heavy meal her blood sugar would sky rocket and then about 2 hours later it would crash.  I mean a hard crash, not gradual, but it would go from 140 to about 320-350 and then by the end of the 2nd hour she would crash down to 40-50.  We called the CDE, and they adjusted her carb ratio because they said that was really the only thing to be adjusted since she was still on such a low amount of long acting insulin and this was only affecting her at meals.  All this did was to make that original high number even higher but she would still crash about 2 hours later.  And let me tell you they were scary crashes and they were fast. 

I remember my Mom and I had decided to take the girls to Nags Head for an extended weekend.  I decided to let Abbie just be a kid and we splurged all weekend.  I remember thinking, there was no way she would have that same crash.  But you know what she did.  And the poor kid felt awful.  She wasn’t sleeping well, she had black circles under her eyes, she was moody all of the time, and just didn’t want to do anything.  I think it was about the end of July, about 2 weeks after the Nags Head trip that I became fed up.  I went to Abbie and asked her if she wanted to lower her carbs back down.  I told her we would start experimenting with food and fixing things a little differently so she didn’t feel left out, but that ultimately this was her decision.  She didn’t even hesitate and that night for dinner she has maybe 15g and was full.  Because it had been so long since she had only had that much, she required a snack later which we of course gave her, she chose some Slim Jim’s, cheese, and some strawberries. 

We noticed an immediate change in her numbers.  She leveled out and no longer had the scary lows at all.  Please don’t get me wrong, Abbie does not have perfect numbers between 85 and 110 all the time.  She definitely has highs where she will go up to around 300 but usually we can pin point what it is and we try to fix it way before it gets to that point, but more on that in another post.  More importantly, she very rarely has lows and if she does they are lows that we can surely handle, maybe in the 65-75 range.  And trust me when I tell you, at least when it comes to my daughter, it is MUCH easier to bring Abbie up than it is to try and get her down!

I think even more important is how Abbie felt.  She immediately felt different and she will tell you.  She started sleeping better, her attitude was much more pleasant (well for an 11-year-old that is hormonal), she no longer had a brain fog, her skin and eyes looked healthier, and she had the energy to play and just be a kid.  So, we as her parents knew that we were doing the right thing for her.  We kept her meals around 15-25g of carbs, a generous portion of healthy fats, and lean proteins.  Most of her carbs come from fibrous vegetables and the occasional lower carb wrap, lavish bread flatbread or something similar.  When we went back to the Endo we of course were scolded, but I didn’t care this time.  We take care of our daughter 24 hours a day, 365 days a year and this works for us and her.  She was thriving and developing beautifully!  But because this was something foreign to him it wasn’t appropriate for his patient.  I smiled and nodded and decided at that moment my husband and I were going to be Abbie’s advocate from now on no matter the cost. 

Syringes, Test Strips, and Carbs…Oh my!

The next morning, I called the Endo’s office and as we expected it would be two weeks before I would get into see them for training.   Our CDE did further explain some items that had been lost in translation such as rounding units up or down and the exact equations to use for calculations.  Let me tell you, I love math, honestly, I do.  But insulin and carb calculations leave something to be desired.  And my husband will probably skin me alive for telling everyone this but he absolutely despises math so I knew this would absolutely not work for him. 

So, I went on a search.  We live in a fantastic digital age with all kinds of information and apps that can do great things.  We found a couple of different insulin calculators for our iPhones but only one that was simplistic enough that even Abbie would be able to use it.  All we had to do was put in the Target Number, the Correction Factor, and the Carb Ratio (which we could change as needed).  Then at meal time input the amount of carbs she was having and bam!  It would tell us how many units of insulin she needed.   It was called Insulin Calculate if anyone wants to check it out. 

The next two weeks was actually pretty simple for us.  We got into a rhythm on how to do things.  Which before I get into her food I guess I need to divulge a little information.  Before her diagnosis, I had been on a fully Keto or Low Carb/High Fat diet for about 3 months.  I had transformed the way I cooked in the house for breakfast and dinner to accommodate the main entrees and then the side dishes were fixed to everyone’s liking. 

For the most part during Abbie’s first year and up to this point her diet had not been altered except for the original things the CDE told me she should not have.   She enjoyed my breakfasts and dinners that I made…I called her my little experimenter.  However, now that Andy and I had to start keeping track of her carb intake to dose her insulin I started to notice that she would have roughly 10-20g at breakfast, 15-25g at lunch, and about 15g-20g at dinner.  Usually her snacks were free snacks which meant anything under 10g that would not spike her blood sugar. 

Training day had arrived!   We showed up and went directly to the CDE’s office.   She downloaded Abbie’s meter and her drew her A1C.  She was at an 8.7!  I almost fainted.  Oh well it is just a number, we will work on it, I remember thinking.   So, Renee, our new CDE, went over what we had been doing, what Abbie had been eating, how many carbs, and I remember her stopping when she found out she had only been having around 60g a day.  “That’s all she is eating, Ms. Eger?” I remember looking at her and saying yes, is that a problem, she is full.  She stepped out and Dr. R came back in with her.  The next 30 minutes was a session of us getting scolded for a couple of things. 

Let me take just a moment to say that I know that as an Endocrinologist your job is to teach your patients to care for their autoimmune diseases or to teach the parent of your patients to care for them.  Dr. R is a fantastic doctor and I know that during these sessions when it seemed he was scolding myself or my husband for certain things he only had my daughter’s best interest in his mind.  You will learn later, that we ended up parting ways later on after too many scolding sessions and I discovered that I didn’t want my daughter treated like all of his other patients because to me she is different and her care should be different.  Ok, back to the session…

First this scolding session consisted of asking us why we were allowing our 10-year-old to give herself her own injections, with our supervision of course. If you remember in the beginning of our story, Abbie had a lot of anxiety over taking shots.  So, one day she asked if she could try doing it herself and maybe it wouldn’t hurt so bad.  Umm, yea, of course.  Anything to ease her anxiety and pain.  So, we got Rufus out, we practiced first a few times and then she did it.  And we never looked back, as long as either her father, myself, or another capable and trained individual was present it was okay with me because her anxiety faded away.  And that was the explanation I gave him.  To him we were making her grow up too fast, giving her too much responsibility and we needed to take it back from her.  I just looked at him with a dumbfounded look and remember telling him that I parent my house and how I allow my child to administer her medications was my choice as long as I was supervising it…next? 

He came prepared for the next one though and laid out pamphlets on why children need carbohydrates to grow and develop properly.  He told me that Abbie was definitely not getting enough carbs a day to grow properly if she was only getting 60g a day.  That she needed that amount in a meal minimum.  I was horrified.  Not at the amount of carbs, but that over the past year I might have been hurting my kid.  I couldn’t see it though, she had grown…a lot actually… she was flourishing in school, but what did I know.  I felt defeated and so did my husband.  I almost started to cry but I held it off and just said okay we will give her more although I didn’t know how to do that considering it wasn’t as if I forced it on her.  The foods she ate were her choice, she liked to eat what I ate. 

Before he left he said he would like to show us some pump options and some CGM options so that when we come back in October we could have one picked out, ordered and get started on that.   I was too sidetracked with the whole carb thing to even pay attention to anything else.  So, I remember asking Renee to give me all the information on the pumps for us to look over at home.  I figured we could sit down and look it over and get back to her.  

For now, I needed to figure out how to feed my kid 60g of carbs at every meal when she was used to having 10-20g at every meal and being overly full with that. 

Ugh…when I look back at this I think I should have fought harder to make him understand because as you will soon read, increasing her carbs was a huge mistake. One that not only I realized but Abbie realized very quickly and made us back her carbs down again.