This recipe was one that I wanted to take from one recipe and another and another. I wasn’t sure if it would all come together, but I just knew somehow that this fish needed a little bit of sweet, a little bit of spicy, and a bit of creaminess to bring it all together. This recipe is keto friendly, paleo, gluten free, and grain free too! So it’s a win all the way around! Abbie absolutely devoured it and my husband loved it too. He is very happy with the amount of seafood I have been experimenting with lately, considering I was never a fan!
4 Fresh or Flash Frozen (thawed) Mahi Mahi fillets
2 tbsps olive oil
1 tbsp cumin
1/2 tsp onion powder
1 tsp chili powder
1/4 tsp pink himalayan salt (or regular sea salt is fine too)
For the Salsa:
1/2 cup Mango, diced
1/4 cup -1/2 cup red onion, finely chopped
1/4 cup – 1/2 cup cucumber, peeled and diced
1/4 cup Roma Tomato (optional, I am not a fan of tomatoes, I had part with and part without)
2 tbsp cilantro, either dried or fresh but finely chopped
1 tbsp lime juice
Either: 1-1/2 tsp jalapeno, minced or 1/4 cup Poblano Pepper finely diced (this just depends on how hot you want it, I made it both ways, both are great, jalapeno makes the salsa a little less sour)
For the Cilantro Sriracha Aioli:
1 cup avacado mayo
1 tsp sriracha (or more to taste
1/2 tbsp cilantro
1 tsp basil
Preheat large skillet or grill over medium heat. Set Mahi Mahi on a plate and pat dry with a paper towel (be gentle!). Note: If using a grill, drizzle the Mahi Mahi with the olive oil and rub to coat the fish.
Mix together cumin, chili powder, onion powder, and sea salt. Rub the seasonings over each fillet.
Combine all the ingredients for the salsa in a small bowl. Mix well and refrigerate until ready to serve.
Combine all ingredients for aioli, mix well and put in fridge until ready to serve.
If using stove: heat olive oil in the skillet. Place Mahi Mahi in skillet and cook for 3-4 minutes then gently turn over and cook for an additional 3-4 minutes.
If using grill: place mahi mahi on grill. Cook 3-4 then gently turn over and cook for an additional
When we left off I was very excited because of a Endo
appointment Abbie and I had with a NP.
She had gotten us all hyped about Abbie becoming independent the coming school
year if not sooner, and that we were doing a fantastic job. We got home and felt fantastic and Abbie told
her Dad all about the appointment. It
was the happiest I had seen her in a while.
What people have to understand is what this disease does to
our kids, it changes them not just physically but emotionally and
mentally. Over the course of the past
year, I saw my daughter slip into a depressive state that Andy and I did not
really know how to approach, and I am currently in school for Clinical Mental
Health Counseling. You take this normal,
happy-go-lucky kid and tell them that everything is going to look the same on
the outside but on the inside they have to battle something to keep themselves
alive…every day. While doing that they
have to explain it to their friends, deal with bullies, deal with school, leave
classes 4-5 times or more a day to go to the nurse, wear funny looking devices
on their body, be singled out because they can have cell phones out in the
classroom or drink juice in the middle of class. But on the outside they look just fine, so to
all the other kids they don’t understand and kick them while they are down, so
At the beginning of Abbie’s depression, I attempted to get
her into see a counselor, but she did not respond well. At this point we were doing most things for
her, counting her carbs, making all of her treatment decisions, probably
harping on her a little too much. So I
decided to step back and give her some responsibility because she sat down and
told me that is what bothered her the most, she just wanted to feel like this
was hers. So I started letting her help
me count her carbs, do her infusion changes (with me present and helping),
changing her Dexcom, and everything in between.
Her mood and overall personality did a 180 over the course of a couple
weeks. She was smiling again and then
that doctor’s appointment was the icing on the cake, because school was the
last place that she felt singled out, like an outsider.
So about a week after that appointment, my husband and I
went on a cruise and the girls stayed with my mom for spring break. Everything was great. Abbie would text me with how she thought she
should treat a number or a meal, and I would adjust if necessary but most of
the time she was close or correct. When
we got back, the school handed out the schedule for SOL testing that would be
happening at the end of the month in May and Abbie went pale. These tests have played havoc on Abbie since
she was diagnosed. Last year, her blood
sugar went up to the 350’s and there was nothing I could do about it.
So, I got with the school and asked them how this was going to work with her Dexcom and treatment. I was told she could not have her phone, that the proxy could have her phone but that any treatments had to go through the nurse. So basically, if Abbie went high, she would be pulled out of the test by the nurse, treated and brought back. I couldn’t be mad at the school, this is what was on her DMMP and they were just following that. At this point I figured I would make a plea to her CDE and her Endo to change her DMMP at least temporarily to get her through her SOL testing.
I called her CDE and made my case telling her that Abbie has shown tremendous responsibility over the past few months, that it was ridiculous that she had to miss so much class time and have to stop these tests when all I had to do was send a simple text message and the message get delivered to her. Her CDE agreed and said she would state my case to the Endo and have him call me back. So I waited. And I waited. And I waited. By 3pm that afternoon, Andy got a little heated and called the doctor’s office to leave a not so nice message. I would say 45 minutes after that phone call, my phone rang but it was Abbie’s CDE. She said she put in the information to her doctor for Abbie to be independent, at least for the month of May until we were able to see him again in July and he denied it stating it was not in his policy to allow children to be independent at school until high school age. She said she put in a message for him to call me as soon as possible. I was livid. I was not so sure a phone call was going to be the best idea, but I was up for it.
The next morning while I was training a class, my phone
rang, it was the doctor’s office. I
kindly excused myself and stepped out into the hallway. He started off the conversation nice enough,
as he was always pleasant to speak to, very kind. He seemed genuinely concerned as to the
trouble I was dealing with and seemed to listen to my plea. When I stopped
talking though is when it all changed. He
started off by letting me know that higher blood sugars for a 30 minute test
was not going to hurt her. I shot back letting
him know that SOLs are not a 30 minute test, they can last up to 4 hours and
these are not just higher blood sugars, she goes up to 350 or more. He went on to tell me that that wouldn’t hurt
her for 4 hours or we could give her a temp basal to battle it before and
after. I told him that made no sense
considering I did not know how much she would actually rise. It was at that point that he went off on a
tangent about that no matter what I said that my child would not be independent,
no now, not in middle school, and possibly not by high school.
He went on to tell me that children that have too much responsibility
tend to resent diabetes. Well excuse me….
Of course she resents diabetes, it freaking diabetes, at least this is giving
her control of it. I explained to him
her depression and how we dealt with it and how giving her the responsibility
gave me my child back, except for at school, school was the one place she still
felt different. He told me it might
have worked for now but eventually she will resent it again, she will resent me
too for putting it all on her. Well I
don’t put it all on her, first of all.. you’re not listening! He then went on
this long run about a self-help book he talks about at the Diabetes Camp and
how I needed to be a better parent to my daughter by taking back control of her
T1D before it got out of hand or I would lose her. I am pretty sure I was
tasting blood considering he was now critiquing my parenting style. The final nail in the coffin was when he told
me that his decision was final, and it was his policy on independence and that
he would make sure no other doctor in his practice gave my daughter this
I was done. I hung up
with him, called the front desk and cancelled her upcoming appointment. I researched surrounding doctors and learned
that I currently drove an hour and half one direction to his office, if I went the
other direction an hour and a half, I had the Virginia Commonwealth University
Children’s Hospital which was full of potential Endos. I began drafting an email to potential new
endocrinologists and have never looked back.
Two days later the Patient Director reached out to me over a phone call
that last almost an hour and we discussed what I was looking for. I never talked bad her current Endo because I
believe we just had a difference in treatment outcomes for my daughter and that
he looked at her like he looked at every other child. I only told them that him and I had reached a
fork in the road that we could not agree on and I was looking for a more
progressive approach to her care. She
set me up with a new Endo and we have had one appointment. So far, Abbie loves her and I like her a
lot. She listened and understood and she
took the time to talk to me and to talk to my daughter like she was a human
Moral of the story: When
it comes to your child… stand your ground.
You know what your child needs, what makes them happy and what makes
them healthy. You deal with this disease
with your child 24/7 so do not let someone who only sees your child every 3
months dictate how they live their life.
So I really did not plan on writing this tonight. But as I was going through one of my facebook groups, one of the Moms reached out and asked if anyone had ever done a “How to Binder” that gave instructions for the Dexcom, Infusion, Foods, Highs and Lows, etc. And as a matter of fact I have. When my husband and I decided we needed some much needed R&R this past April and went on a cruise for 7 days, I got busy and made a “T1D Crash Course” for my Mom and Dad who would be caring for Abbie.
It included what we do when she is high, what we do when she is low and how we want them to just have fun and not worry as much as we do. I made sure to tell them that I understood they would not draw the parameters as tight I did and that was ok, but I wanted to give them the tools to handle most anything. I included instructions on the Dexcom G5, the Tslim X2 pump and infusion change, different foods, what to do in extreme emergencies including using Glucagon, and even visual aids 🙂 .
Attached is the PDF version which is not able to be edited but you can look at it and figure it out your own. I have also included the Word version which you can edit and make your own. I figure if it is at least helpful to one person then it is worth sharing. I went and got a binder with dividers so my Mom could just find whatever she needed.
Let me tell you , I am not a seafood person. I think we have
had this discussion before. But I
recently went to the doctor and eating all this meat (specifically red meat)
has caused my bad cholesterol to be slightly elevated. So she told me to cut out red meat and eat
more fish. I loved salmon cakes as a
kid, but my Momma used the salmon out of a can that you had to pick through and
just nope, not doing it. Plus it was
loaded with mayo and bread crumbs and all kinds of carbs that I couldn’t have
and Abbie definitely couldn’t have. So I
mashed a couple recipes together and came up with this one… and it was
great. All 12 cakes were devoured.
Keto Salmon Cakes with Sriracha Avocado Cream Sauce
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
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
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?
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
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….
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!
So I have seen different recipes for these and most of them call for dill and some kind of corn starch or regular flour. First off I don’t like dill and we don’t eat flour so I knew I had to do this another way. These came out really good and the whole family liked them. And at only 2g of carbs each you just can’t beat it. So on to the recipe……
Nutrition Facts: Makes approx. 12-14 Fritters Serving Size: 1 Each Calories: 391|Fat: 28g| Carbs: 2g| Protein: 34g
1lb Chicken (ground, shredded, whichever you prefer, I used Tyson’s shredded chicken to make the meal faster)
1/4 cup of almond flour (very fine, blanched)
1 egg, slightly beaten
1/3 cup olive oil mayonnaise
4oz. mozzarella cheese
salt and pepper to taste
Rotisserie seasoning (Ms. Dash or your favorite brand, just be cautious of the carbs)
2tbsp olive oil or coconut oil
(If using Tyson’s Shredded chicken) Melt the butter in a skillet over medium heat; and cook entire bag of chicken until completely thawed and cooked through. Remove from heat.
(If using ground chicken no need to pre-cook)
In a medium bowl, combine chicken, almond flour, egg, mayonnaise, 3oz. of cheese, and seasonings. Mix until well combined.
Heat olive oil in a frying pan over a medium-high heat until it is glistening.
Fry the fritters for 3-4 minutes on each side or until slightly browned. Transfer to a plate.
Sprinkle with the remaining 1oz. of cheese and parsley.
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
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.
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
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.