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!
The sauce on top is a cilantro sriracha aioli. It’s my go-to for a lot of different items, so a staple in our house.
Ingredients
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
Directions
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
to speak.
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.
Umm what?
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
either.
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
being.
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.
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?
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.
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.
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.
Let me start off by whoever made up this name is a deceiver. When I read up on the “Honeymoon Phase” of Type 1 Diabetes I read all kinds of stories about kids going from a ton of insulin every day to barely any insulin every day; to scary highs and scary lows. The parents were calling the doctor’s office every day trying to get the dosing correct but still were having a hard time. During this phase the body’s pancreas is still functioning somewhat and still pushing out insulin which makes the dosing harder.
So this post will be a summary of the next year of Abigail’s diagnosis. When she came home from the hospital she was on 5 units of Levemir (long-acting) insulin. Basically, this is a 12-18 hour insulin meant to keep her blood sugar in check from the morning until almost the next morning. Over the next couple weeks we noticed she would be really low by the time she came home from school, usually around 50 or 60, or by the time she went to bed. So, by April she had been dropped from 5 units of Levemir to only 1 unit of Levemir.
Everything seemed to go smoothly for a couple of weeks. School let out for Spring Break; her Dad and I went on a mini vacation to Las Vegas that had been pre-planned before her diagnosis and everything seemed to be going fine. My Mom noticed a couple of lows, around 65, while we were on vacation but nothing to be too concerned about considering the amount of exercise she was getting. However, the first week back at school, everyday around three to four times a day she began getting lows again down into the 40s. So the CDE lowered her Levemir to a 1/2 unit in the morning! Have any of you tried to draw a 1/2 unit of anything into a syringe? It has to be the most tedious thing I have ever done. Even at a 1/2 unit she was still getting the lows 2-3 times a day and sometimes more. On April 26, 2017, Abigail was taken completely off of insulin.
To most T1D parents’ of children in the honeymoon phase this actually would not be a big deal, as this happens all the time. However, this is when our honeymoon phase became our “denial phase”. Abigail remained on absolutely NO INSULIN for over a year! We only had to check her blood sugar around four times a day and that was it. We went on family vacations to the beach that summer and amusements parks. We even took a 10-day vacation to Disney World in October. Nothing ever changed even though I kept waiting for the other shoe to drop.
The longer she went without the need for insulin the more it made my husband question her diagnosis. “Babe, maybe we should get a second opinion, maybe they were wrong, something just feels off.” The problem was that I had seen her antibodies tests and I knew with every fiber of my being that they weren’t wrong and I had come to terms with it. I had prepped myself so much for insulin shots, nightly checks, food logs, and how to cope in our marriage, that I had not prepared myself with how to cope with this. How do you prepare yourself against hope? It’s not that I didn’t want to have hope, I didn’t want to have false hope. My husband was full enough of the denial and false hope for the both of us, and to be honest during that first year there were a lot of arguments over it. I needed us to be on the same page and create a united front for our entire family.
So, in May of 2018 when I noticed her Blood Sugar started to creep back up I tried to warn Andy the best I could. But denial is a funny thing, it completely blinds you and until it hits you right in the face, he was not going to see it. That was fine cause I knew we would get back to our united family unit when he came to terms with this diagnosis once and for all, we had been married for 15 years after all, we could survive anything. When her average numbers were around 140 during the day I finally called her CDE. They put her back on 1 unit of Levemir and I think it hit Andy like a truck. The denial faded away and he finally understood that this was our diagnosis as a family and we could do this. But I knew we were still in the honeymoon phase and we still had it easy… the other shoe still had not completely dropped.
Fast forward slightly to the end of June. School had let out and I had noticed that even with swimming and all the exercise that summer brings Abigail’s blood sugar over the past couple days just keep creeping up. It was a Friday, before lunch she was around 150…not too bad but let’s get a call in since I had to work that night. When I called I forgot the office closed at 1:30 on Fridays so I left a message. I had to start getting dinner and get myself ready for work. I had Abigail check her blood sugar again and now she was at 320! I panicked. I absolutely did not want an Emergency Room visit but I had no way to bring down her Blood Sugar and no idea how to do it. We were never trained on anything other than Levemir.
The on-call doctor called me back, who was not her normal endo by the way, and asked me what was going on. I explained everything and he immediately said “ok, well I think we need to adjust her basal rates and maybe lower her carb ratio.” I sat silent and told him I had no idea what he was talking about and explained we had not been taught that. He was wonderful and told me I had two options: 1) bring her into the emergency room, where they would hook her up to an IV, to get her numbers down and have one of the nurse’s or on-call staff try to explain everything there or 2) he could call me in a prescription for fast-acting insulin and he could explain everything to me over the phone. I was confident in my common sense and my ability to listen so I opted for option 2. In thirty minutes I received the quick and dirty of carb ratios, a target number, basal and bolus and when I should give her insulin. We would be scheduled for a more thorough training class but that wouldn’t be for about 2 weeks so we would need to hold out until then. By the next morning, her blood sugar was down to 130 and I thought two things….
Normal pizza has roughly 35g of carbs per slice, this has approximately 10g for the entire pizza. The only way you could add more would depend on toppings.
I start out with Joseph’s Lavash Bread Flat Bread. These are soft and delicious and only 6g Net Carbs for 1/2 of the flat bread. I cut them in half. Get your favorite no sugar added pizza sauce and your favorite toppings and you are all set. Pictured I used 6 Italian Cheese Blend, Monterey Jack, Pepperoncinis, and Pepperoni. They only bake for about 15 minutes so they make for a kid friendly and super fast week night meal!
2-3 Pepperoncinis (or more depending on your taste)
6-8 Slices of Pepperoni (cut up)
Other toppings to consider that would not change carbs (but would change other Nutrition facts): any meat, other cheeses. Most vegetables would change carb count but would be minimal.
Directions:
Prehead oven to 350 degrees Fahrenheit. Line a pan with aluminum foil and lightly spray with cooking spay.
Place your flat bread on the pan. Take the olive oil and drizzle it on the flat bread. Brush it over the flat bread. Sprinkle oregano and basil over the olive oil.
Spoon the pizza sauce onto the flat bread and spread it out.
Sprinkle 1/2 of the italian cheese on top of the pizza sauce. Spread out your toppings. Top with the remaining cheese.
Place in oven for 12-15 minutes depending on how done you like your pizza (I like mine well done, so I cook mine for 17 minutes).
The first night Abbie was home I don’t think I took a breath. I kept waiting for something to happen, something to go wrong and for us to have rush her the hour drive to the Children’s Hospital. She rushed in with all of her balloons and flowers and wrapped her little arms around me. The first thing she asked about was about dinner and she proceeded to tell me how awful the hospital food was. I literally almost panicked, in all of my preparation, I never even thought about what I was going to feed her or us for that matter. So, I asked her how she would feel about going out to dinner even though she would have to check her blood sugar before eating? “No problem Mom, I think”, she replied. Ok, I thought, we’ve got this. We went out to dinner in town and came home to get the girls ready for bed. The rest of the night was extremely… ordinary. Nothing went wrong, the other shoe didn’t drop, and I finally took a breath.
We decided we would keep Abbie home the next day since it was a Friday so we would be able to have the weekend to get acclimated back to our routine at home. She woke up, checked her blood sugar, took her Levemir without incident, ate breakfast and this is how most of the day went. Until about 2pm when Abbie remembered the Father/Daughter dance was that night and that she really wanted to go. I remember looking over at Andy and him nodding at me and I told her to go pick out her dress that she could definitely go. A smile took over her whole face and in that moment the past few days faded away from her. While she was getting ready and her Dad was getting a shower, I decided to get her Go Bag ready. The first Go Bag….
For those of you that don’t know what a Go Bag is, it is basically anything we would need in a hyperglycemic (high blood sugar) or hypoglycemic (low blood sugar) event. Since Abbie was only on Levemir in the mornings, and since the dance could only be for about 2 hours I only had to pack her blood glucose meter, about 10 packs of fruit snacks, 6 juice boxes, a glucagon injection kit, her Levemir just in case, a box of alcohol swabs, and a box of gauze pads….that was enough right? Don’t worry I didn’t really send her off with all of that, not because I didn’t want to, only because it wouldn’t fit in the Go Bag. In reality, I packed her meter, a juice box, a fruit snack, the Glucagon Injection Kit, a couple alcohol swaps and gauze pads and then I called it done. We only live about 2 miles from the school and if for some reason Andy or Abbie needed anything I could be there in 5 minutes.
So off they went and even though she was with Andy I was still worried out of my mind. This diagnosis had brought a whole new side to me because worrying was something I just never did. At least not things out of my control…. I was scared of how her little friends were going to treat her when they found out or how they would look at her when she checked her blood sugar if she decided to do it in front of them. I just had all of these new fears for her that I didn’t know how to express. So I sat at home and researched and read and researched some more. When my phone buzzed about an hour later the pictures melted my heart.
There she was with her Go Bag open checking her blood sugar in front of all of her friends. Andy said she explained the whole process to all of them and why she had to do this now every time she ate anything. They were all very intrigued instead of mocking and tears formed in my eyes. In that moment I knew Abbie would be okay; I knew we would all be okay.
Next up…. the Honeymoon Phase or the “Denial Phase” as I like to call it…
Stay tuned. Please leave a comment, like or share! Thanks for stopping by!
Abbie has been begging me for weeks to make salmon cakes since she has a love for seafood that I just do not understand or share. That is something her and her Dad have in common and I try very hard to accommodate it at least once every couple of weeks with shrimp scampi or Ahi Tuna. I grew up with fried salmon cakes for dinner but I remember vividly my Mom making them with that red canned salmon and the gross product that came out it (insert gagging sounds here). I remember her picking through the fish to get out the bones and the skin and then forming the patties and by the end, the product was fantastic but also loaded in carbs! Now they make skinless and boneless salmon, so there is no picking through that stuff, but in my house, we have the issue that Andy loves all seafood except… yep you guessed it… salmon cakes.
So, I went searching for a crab cake recipe since Abbie has had them before at restaurants while on vacation and loved them and her Dad loves them. The problem is that normal crab cakes have upwards of 15-20g of carbs for 2 cakes. I know that doesn’t sound like a lot but when you add in a side dish or two that will make a meal around 50 to 60 grams of carbs and we have already been through that conversation right?
So, I went searching and still couldn’t find exactly what I was looking for. Either they were deep fried or fried in oil or still contained a lot of bread crumbs or no seasoning. So, I decided to put some things together and come up with my own. It started with basics that I knew: premium lump crab meat, eggs, olive oil or avocado mayo, Dijon mustard, and lemon juice. Now to make sure it stuck together. I didn’t want to use bread crumbs but it had to hold together. So, I decided to use panko bread crumbs instead and at some point, I may try an alternative and see if I can bring the carb count down even lower but these are pretty darn low as it is. Next, I moved on to seasoning. I of course knew I wanted them to contain minced garlic, salt and pepper. Then I added some mango habanero seasoning, ancho Chile powder, basil, and oregano. I know lots of spices but I like a lot of taste! Once everything is mixed I made the patties and laid them out on a sheet pan, placed them in the refrigerator for an hour so they could set.
I let them set in the fridge while I picked the girls up from school. Today was a very busy after school day because it was a Dexcom sensor change day, I had to get dinner finished, and I had to be at work by 6pm. So as soon as the girls got Abbie’s old sensor lathered up with Uni-solve so it would come easy and then went to work finishing these up on the stove. On days that I work I don’t usually sit down with my family to eat and today wasn’t any different. So, I finished the crab cakes, placed them on platter with a bit of Yum Yum sauce on top. I spiralized a couple of zucchinis, put them in the oven with olive oil, salt pepper, parmesan cheese and garlic at 375 for about 15 minutes for a side dish and their dinner was complete. I wasn’t really sure how the crab cakes or the zucchini noodles were going to go over with Andy and Abbie but I was sure that a meal that would normally be around 60g of carbs and I had been able to get it down to 18g of carbs for 2 crab cakes and a heaping portion of the noodles was a win-win even if I needed to tweak the recipe at some point.
I was about half way to work when my Carplay in my Jeep interrupted my Juicebox Podcast and told me I had a new text message from Andy. The text message read, “these crab cakes will forever be named, Oh my god crab cakes!” An immediate second message came through that read, “with the zucchini noodles this meal was better than a restaurant.” So, I responded back, “I guess it’s blog worthy then, huh?”. And here we are. I hope you enjoy the recipe.
Whisk together mayonnaise, mustard, sea salt, pepper, lemon juice and eggs. Gently stir in crab meat, panko, garlic and the rest of the seasonings.
Shape mixture into 12 patties pressing them gently to flatten. Place patties on a baking sheet. (I line mine with aluminum foil to lessen clean-up). Cover with plastic wrap or aluminum foil.
Refrigerate for 1 hour or you can place in freezer for 30-40 minutes if short on time.
After 1 hour, melt 1-1/2 tbsp of butter in a large skillet over medium-high heat. Make sure the pan it preheated and butter is melted completely.
Added 4-6 patties to the skillet; cook 2-1/2 minutes on each side or until a golden-brown color. Remove from pan.
EXTRA STEP! This is optional: before placing next patties in the pan, I rinse the old butter out and wipe with paper towel. This keeps them from blackening.
Melt additional 1-1/2tbsp of butter in skillet and repeat step 5.
Garnish with parsley.
Top with Yum-Yum sauce. I pour Yum Yum sauce into a table spoon and drizzle over the patties.
