Halloween is Just the Beginning

Halloween is Just the Beginning

This time of the year is really getting to me. It is the start of the holidays in which food is a part of everything.  Halloween is tonight and I absolutely do not want my kid to feel left out by missing the fun of dressing up and going around our neighborhood. But man, it really stinks that almost every house hands out candy! I always thought I’d have to sneak my kids’ candy piece by piece, not have to take all of it away and be the bad guy every year. Later we plan on having her trade her candy in for toys or money, but for now we are the guys stealing candy from a baby since she doesn’t know what trading is. Next up is Thanksgiving (land of pies, casseroles, and bread), followed by Christmas (hello baked goods!). I still think a bit selfishly at times. Does this mean the end of our yearly cookie baking fest for my friends and me? The end of receiving cake balls & homemade Reese cups from our neighbor? No more yeast rolls, sweet potato casserole, corn casserole, or my mom’s chocolate cream pie? (Jeez, no wonder I’ve gained weight since high school!)  I can still sneak things behind her back this year, but what about in the years to come? Although we don’t have the insanity of the physical needles and symptoms, we still do have to make dietary cuts, figure out the carbs in every serving of every snack, meal & drink, deal with finances, give the blood checks, injections, log everything, go to the doctor appointments, etc.  I wonder if other D parents feel like they were also diagnosed with diabetes when their kid was.

 

Update: Halloween turned out to be quite okay. My husband did the candy shopping and came home with three small bags of candy for a huge kid-populated neighborhood, so we had to stop back home after a bit to drop off candy to be re-handed out. (My poor mom probably will not volunteer for candy hand-outs next year). We ended up with about 30 pieces at the end of which we gave one mini-Twix to M in the middle of walking so that she burned it off, along with a bolus to cover the carbs. Right after Halloween is when she got sick for about 2 weeks with a bunch of lows, so we saved the things like dum-dums and Smarties for lows or special treats if she was on the downward trend. We are definitely feeling better about the upcoming holidays this year. Oh the rollercoaster of emotions D brings!

A Day in the Life....

A Day in the Life of a Diabetic Toddler’s Handler

     In the last post, I mentioned that M was being assessed by a developmental assessor for delays. My main concern was speech but it turns out that she is more concerned about adaptive delays. (She has about a 15% delay in speech/language but 33%+ delay in adaptive, which is things like using a fork & spoon consistently, taking off Velcro shoes, etc.)  When we were going through the paperwork, she was required to ask about M’s daily routine, about feedings, and even if meal times are stressful. I had to laugh at that one. After I went through it all with her, she was like “Wow that really is a lot to deal with.”  Hearing it out loud was overwhelming, even to me. I realized that people really just don’t understand what it’s like to have a child with this disability. So I thought I’d *try* to outline a daily routine & thought process of what we go through every day, and why it’s so stressful so often. (For those who have diabetes &/or care for someone with it, please keep in mind that she is still honeymooning so her pump settings are not yet precise so we still have lots of highs/lows. Also, she is also a toddler so her control doesn’t need to be as tight as a post-pubescent child. CGM values = Low is anything below 90; High is over 300).

·         Wake up & look at the continuous glucose monitor (CGM) to make sure blood glucose levels are okay.

·         Make sure M wakes up within certain time frame so that we can calibrate the CGM and get her fed.

·         Get M from bed, come downstairs, get “juice” bottle (crystal light/water) & check her blood. Calibrate CGM. Figure out what she is going to eat. Count /measure the carbs exactly. It has to be between 28 and 40 grams. Try to hold her off because she doesn’t understand why we are getting her food out but not letting her eat it. Take the blood number and the carb number and enter them into her pump to find out how much insulin she needs. Dose her with the suggested amount. (Or not, sometimes we have to make adjustments for various reasons). Write everything down. Wait 15 minutes (we set a timer on the stove). Feed her (and all that entails for a toddler including cleaning up the area and her at the end).  Make sure the dog doesn’t eat any of her food. Make sure that she eats all of the food.

·         If the dog gets a piece, that’s carbs she’s not getting that she has been dosed for.

·         If she doesn’t eat all of her food, that’s carbs she’s not getting that she has been dosed for.

·         If she doesn’t get all the carbs she’s been dosed for, we have to figure out a replacement for those carbs and somehow get her to eat them.

·         For the next three hours, we watch the CGM monitor to see if her blood sugar if on target, too high, or too low. Too low means another snack and round of blood checks/insulin dosing. Too high means another round of blood checks/insulin dosing.

·         Then we have to feed her lunch at a precise 3-3.5 hours after breakfast because she starts crashing towards low blood sugar VERY fast right at the 3 hour mark. Another round of what to eat, weighing/measuring out the exact carb grams, holding her off, checking her blood, figuring out her dose and giving it, write it down, wait 10-15 minutes, feed her.  Then we wait to make sure that she hasn’t crashed too low from the food not “kicking” in before the insulin. So we wait to see an upward trend on the CGM monitor before we put her to bed for her nap.

·         Then again for the duration of her nap, we watch the CGM monitor to see how her sugar is doing. I generally don’t do anything while she’s sleeping if it creeps high but if it’s going low, I have to wake her up early to manually check her blood and give a snack if needed. If she is high, I wait until she wakes up, then check her blood and give a dose of insulin. After she wakes up, she may want a snack before dinner, so it is another round of weighing out food, counting the carbs, dosing the insulin, waiting the time, then making sure she eats the food entirely.

·         Dinner time is basically between 6-7:30 and consists of the same thing as lunch. Just remember when I say count carbs exactly, I’m talking that you have to know every measure of ketchup, every spoonful of peas, the breading on the chicken, the glaze on the carrots. Lasagna would be having to know the precise amount of noodles she was getting, with the best estimate of the mixture of sauce in which you have calculated the carb grams in the tomatoes, sugar, onion, meat, cheeses, etc.  And you have to know this all at least 15 minutes in advance. I would love to be able to eat a completely hot meal but generally don’t get to because it usually has to be done before we can weigh it, estimate carbs, and get her insulin dosed. Then we have to wait out the 15 minutes because I’m not cruel and won’t eat in front of her while she has to wait.

§         Don’t forget that you are dealing with a toddler’s finicky eating habits here. So if you give her insulin for something, you better make sure there is a high probability that she is going to eat it. We used to wait until the end of the meal to give her the insulin, but that didn’t work out so well because the time delay between food and insulin activating in your body meant that she would have HUGE blood sugar spikes that were nearly impossible to fix.

·         After dinner, it’s another 3 hour analysis of the CGM monitor before the bedtime blood check. Calibrate the CGM. If she is high, we give a dose of insulin. (Which is the nightly game of how much because too much will cause her to go low in the middle of the night. Too little means she stays elevated all night and can cause ketones to develop.) If she isn’t high enough, then it is a carefully selected night snack. (A balance of carbs, protein & fat in just the right gram amount which is anywhere from 4g to 15g depending on exactly what her blood glucose is.)

·         We also assess her CGM before we go to bed to make sure that her trend is going the right way that will sustain her through the night. If we messed up and she goes low, we get alerted by the CGM monitor with a loud vibration (we keep it in a glass cup), along with a loud alert sound. Then we check her blood, give her a real juice. Wait 15 minutes, check blood again, and then give a snack if the blood value has risen above the “low”. If not, we repeat. If we messed up and she stays high all night, then it is guaranteed she will wet the bed and I will have to change all the sheets, blankies, pump pouch and Pj’s, as well as give her a bath before I can start the morning routine. Because guess what?! You can’t give a bath/shower within the first 90 minutes after giving insulin. So if she needs a bath, it has to be before a dose or after the 90 minutes has elapsed. Why? Because it causes the insulin to be super absorbed and can drop her blood glucose levels low accidentally.

     So that’s basically our life, except on the days we have to reinstall her pump cannula or her CGM sensor. It’s every 3 days for the pump and every 7 for the CGM if we are lucky and nothing malfunctions. The pump cannula is slighter smaller than an IV that we have to shoot with a needle into a fatty area somewhere on her body (usually upper butt but can be lower stomach, backs of the arms, or upper thighs). The CGM sensor is about the thickness of a needle you would receive for a vaccine.  Either way, not easy to install on a 2 year old who doesn’t understand why you are sticking her with anything, let alone these large needles. She is pretty great with her blood sugar checks but it takes both of us to do the pump/CGM. My husband to hold her down while she screams and kicks and myself to prep the sites, insert the devices, etc. = FUN!

 

Developmental Delays in Type 1 Toddlers?

Correlation Between Developmental Delays and Type 1 Diabetes in Toddlers?

     Although I can find no research either way, and our Endocrinologist says not, I would like to state that I unequivocally think that diabetes caused a speech delay in my daughter. She was diagnosed at 22 months, but started sliding downhill in the 20^th month. She was always a little behind on the clarity of speech and number of words but was very active. She mastered the motor skills at early intervals. But at 20 months, she should have been making rapid gains in language skills. And she lagged. And lagged. Then I notice she started not wanting to come down the steps from our second floor to the first. I had to carry her every time. Not normal. This continued for months. I thought maybe she had developed a fear of the stairs due to some unknown reason.  

 

     After her diagnosis (on a Saturday), she was treated for DKA and her blood glucose levels were brought down. That following Monday, she gained more words in one day than she had managed to learn in the past three months. Suspicious, that’s what I call it. When you go from one word per month to three in one day? Immediately following receiving the insulin that your body needs? For a quick refresher, glucose is what the body breaks down for energy. Energy allows you to perform both physically AND mentally. IMO, if you have high energy needs physically, there is going to be less available for mental. She is a high energy kid. So the insulin wasn’t there to break down the glucose, meaning less glucose was available to support her activities. The body goes on survival mode and will keep supplying the glucose to the physical energy needs, leaving the learning (ie: mental) needs lacking. She simply didn’t have enough energy to supply her little brain the tools it needed to grow and thrive. Thus, she wasn’t learning new words. Then even her activity levels started dropping. Then the downward slope into real diabetes symptoms and finally DKA. Therefore, she got the insulin in the hospital, which broke down the glucose needed for her brain to learn new things, and poof, within no time at all she was learning new stuff.

 

     I am not a medical doctor or researcher, but I have enough analytical experience to recognize patterns and put two and two together. I also have an undergrad degree in clinical psychology, which includes lots of statistical/research courses. It is a tough area to have science backing me up on, because of the age of onset being so young that there are not a lot of kids to study but I would bet (HEAR ME OUT RESEARCHERS), that if they were to aim a focused study at developmental learning in this age range it would show a correlation between the two (type 1 diabetes onset and delay in speech/learning). I currently have her being assessed by a Developmental Assessor for a state program (through IDEA) and she agreed that there was a high likelihood of the two being related. If your brain is foggy from a high or low, how much harder would it be to take in new things and retain them?


A FEW UPDATES (JULY 2014):
1. Researchers have now shown a link between DKA and brain changes in children. They followed them for 6 months and found that DKA correlates to instances of brain change in children. Diabetes Care June 2014 vol. 37 no. 6 1554-1562. 
Again, I say that it is possible that delays are occurring before DKA.

2. After completing 6 months of home-based speech therapy, DD was evaluated by our local school district for an ESSS program designed for delayed 3 year olds where they are integrated with "normal" 4-5 year olds in the VPK program. She showed significant delay in expressive language and some delays in cognitive behaviors. They recommended classroom therapy for up to VPK's full-time schedule (pending parent concerns), as well as 90 minutes of speech and language therapy per week. We were terrified at this prospect, but at her IEP meeting, it was determined that she would have a 1:1 nurse assigned to her. Since registering for school, we also set-up Nightscout, where we are able to remotely view her Dexcom! (More on this in another post.)

3. As of 3 years, 3 months, she is doing better but still far behind her peers (as my 4 year old cousin stated, "Why doesn't she know how to talk yet?"). She mainly has a go-to cache of words and spontaneous sentences are still rare, so although she is very vocal, it's a lot of the same words or pre-learned sentences. If someone asks her any question, she always answers with "I'm Kayla". So it is still a work in progress....

Our Insurance Fight

Our Insurance "Fight"

     Dun-Dun-Dun, the dreaded insurance coverage guideline. The glaring words shouting out from my computer screen stating that insulin pumps are only possible after a six month waiting period after the patient completes MDI (Multiple Daily Injections) and can submit logs. I see this and think “challenge accepted”. So at 1.5 months after diagnosis, I tell my doctor that I am asking for them to work with me on getting approval for a pump for our daughter. They basically tell me that my insurance has a waiting period of 6 months, and that generally the first request is denied, especially within the first six months but they would be happy to get the process started if that was "my wish" (I can tell they think I've got no shot but if I want to waste my time then so be it).  We review the pump options and settle on the Animas Ping due to the micro-dosing abilities, waterproof technology, and the remote control. I’ve already met the deductible this year because of her hospital stay, so I do not want to wait until the end of the year to apply and then be denied. She needed micro-dosing abilities because of her honeymoon period and was either going too high or too low because you couldn’t get more precise with a syringe. Normally the excuse to delay pumping is because of the honeymoon period but it was the opposite with my child.

     So here is what I did. I contacted the Animas rep and got the application. I submitted said application along with a lovely little letter I call the pre-appeal. Instead of having to appeal a denial a month later, I figured I’d put my appeal points into a lengthy letter that would have done a lawyer proud. At the top of the letter, I placed a smiling photo of my daughter which just dared them to deny her. I then reviewed 8 points of why she needed a pump before the 6 month waiting period ended. Luckily at my last job before becoming a stay-at-home mom, I did medical appeal letters on a regular basis. So I utilized the format and lingo that were successful with those claim appeals. Then I submitted everything to the rep and waited (kind-of).

     A week and a half later, (after one phone call to the call center to inquire as to how much longer it might be because in the meantime my daughter almost died and that this would be a constant threat until she was on the pump), I received a call directly from the shipping division of Animas telling me that my pump would be sent out that day and at my door within 2 days. I started crying and jumping up and down. You would have thought they had told me that there was a brand new Mercedes I had won in a drawing being delivered. Nope, just our beautiful, pink and shiny new insulin pump, no larger than a cell phone.

     Then….I called my daughter’s Endocrinologist office to ask about pump training. They tell me that we can come in next month (say whattt???!). Apparently they never thought that we would be approved and hadn’t started us on the MDI schedule that mimics the pump yet. I sat there and looked at the formulas. I look at the syringe. I look at the formulas. Then I ask her Dr.’s diabetes educator one important question. How is the MDI schedule you want her on any different than the MDI formulas? Because the whole point of the pump is the dosing is more exact. We were stuck in place on the syringes. In a 3/10cc syringe, .5 is the smallest dose, followed by 1. She was either .5 or 1 depending on the time of day. If we go less, she goes too high. If we go more, she goes too low. So basically I’d be doing the exact same injections for a month while my brand new, hard-fought pump sits in its box in our house. No way! Let’s just say they saw my logic and got her in within a couple days. They told me that my daughter was the fastest to ever receive pump training. So by month two, 9 weeks after diagnosis, my daughter was full-time pumping with the Animas at zero cost to us.

The Scariest Moments

The Scariest Moments

(IE: I Love Our Dexcom)

      First, let me say that the Continuous Glucose Monitor (CGM) is one of the best inventions ever. The Dexcom G4 is probably the best of the CGM’s currently available in the US. When your kid is a type 1 diabetic and cannot tell you when they feel high or low, aside from testing them a hundred times a day, a CGM is the only way to go. Luckily our insurance covered it no problem, so we had our CGM training in under a month after diagnosis. Since then, it has literally saved her life more than once.

      But the first and scariest time was on Memorial Day, 2013. She normally naps about 2 hours, starting immediately after lunch. So I fed her the normal carb amount (then 30-35g), gave the normal bolus, and put her down. She was in the 120’s before lunch and had a medium range glycemic food. About 45 minutes into her nap, her Dexcom alerted that she was going low. (We have it programmed for anything below 90). I hated to wake her up to check her blood since she generally won’t fall back asleep for naps, but the trend was going down. Better safe than sorry! So I trudged up there, checked her blood, and had my first mini-stroke. It was a 44! I ran back downstairs for the insta-glucose and more test strips. As I was having her drink the glucose pack, I double checked it and it was a 46! She was super hard to wake up and was sweaty to the point of soaking the sheets. She starting screaming when I woke her up, alerting my husband to the fact there was a problem (he was sunbathing in the yard). After a mere 45 minutes into a 2 hour stretch of napping, she had dropped almost a hundred points.

     I shudder to think if we hadn’t had the Dexcom and had waited for her to wake up on her own. I will let her sleep 3 hours before I wake her up if she’s not yet up so she would have been up there going lower and lower for another two hours. I would have had a dead-in-the-bed kid. I had to go and lay down for a couple hours after that because I was so sick at the thought. Let’s just say we had already applied to our insurance company for the pump (to better regulate her dosing since the syringes couldn’t get the micro-dosing she needed), and I had them on the phone the next day putting a emergency status on the “review”.  More on that insurance fight next post.

Dexcom CGM Monitor on her stomach

Hell Week

Hell Week

      The first week at home with our newly diagnosed 23 month old daughter was what I like to refer to as “hell week”. I guarantee it would have tried the patience and endurance of any Marine. I cried, I begged, I wondered what the heck my life was turning out to be. And I wasn’t even the one diagnosed with type 1 diabetes!  But seriously, I would have had to check into a mental asylum if it had been much longer than that infuriatingly long week. Why do you ask?  My toddler’s tantrums should have been the basis for the Exorcist. She could have taught fellow two year olds on how to properly throw a temper tantrum worthy of an Oscar nomination. You could have filmed it for a reality TV show on dysfunctional children with behavioral issues.

     I want to preface the following by saying I totally would have done the same thing if I was two years old and had no understanding of what was happening to me. I probably would’ve despised my parents for seemingly torturing me 10+ times a day with needles galore and on top of that, waking me up throughout the night leaving me feeling like a zombie. However, sympathizing does not alleviate the totality of the stress of having to watch your two year old throw herself on the ground and bang her head backwards. Hitting, biting, kicking, & deafening screams. I actually worried that my neighbors would think that we were abusing our child from the sounds that emanated from our house. I worried about concussions from the throwing her head backwards on the tile. She developed bruises from the insulin shots from kicking in the middle of an injection. She ran from us when we tried to get blood for her glucose checks. We woke up every 2-3 hours to check her blood at night to make sure she wasn’t going low. A lack of sleep abounded in our family. Did I mention I was 4.5 months pregnant during this?

     I felt like no one could understand. She was eating more than a teenage boy to recover from the weight loss associated from the DKA episode (at her diagnosis). To everyone else, she was handling it like a champ. But…..She had a special resentment just for mommy during our long hours alone together while daddy was at work. I had to figure out pretzel-like maneuvers to get her into a manageable position to give her shots & check her blood. I had calculators all over the place to double check my carb counts before I could feed her. And did I mention that she wanted to be fed NOW. As in blood curdling screaming that would last from the instant she felt a hunger cue through the blood check, preparation, cooling, counting, plating, etc.  Did I mention she was hungry ALL THE TIME. And on a feeding schedule. With limited carb amounts. Let’s just say she ate a lot of cheese and sugar-free jello that week.

     I was terrified of making a mistake. We had the smallest syringe available and had to fill it to one of the two smallest lines within the syringe. There was: two types of insulin to possibly mix up; lancets to deal with; sharps containers to pick up; organization of the buckets of diabetes care items and education; writing down EVERYTHING.

     Everything I had taken for granted was becoming my most treasured memories. Easter approached right after diagnosis and all the other kids got Easter candies. Except my child, who couldn’t have them. It was like a giant pity-party at our house. Mourning for the childhood she should have had, filled with cotton candy, Halloween treats, birthday cake, candied apples, Sunday morning pancakes, and baking cookies with mom.

 

     Just over a week and the appetite started to settle down. With that, the temper tantrums subsided to the normal two year old levels (while always fun, in no way resembled the terror-striking ones of the past week). My husband and I figure out a sleep schedule. I start to get a handle on my emotions. We crash course learn about insulin dosing, carb counting, symptoms of highs & lows, no-no foods, the glycemic index, food measuring, insurance coverage, outing planning, and where to sell an organ to pay for everything.


     All kidding aside, you literally go through the 7 stages of grief: Shock & Denial – yep; Pain & Guilt – double check; Anger & Bargaining – oh ya; Depression, Reflection & Loneliness – yep; Upward Turn – this is the “getting a handle on my emotions” portion; Reconstruction & Working Through – this one took a couple of months; Acceptance & Hope – 6 months later I am here.)