What I Want to Really Say When I Say "I'm Fine"

     When a parent has a child diagnosed with type 1 diabetes, there is a rollercoaster of emotions, learning diabetes care, expenses, etc. What others don’t realize is that we have our own struggles that are separate from what our kids face. What we need is support and a little understanding. This is not a disease to blow-off and it is not a disease that our kids will outgrow. This is our new reality and it’s harder than you probably thought or give us credit for. We are not looking to be “victims”, but want you to understand that when you ask us “How’s it going?”, and we say “Fine.”, we are really just giving you the answer you were looking for instead of telling you this:

• We have perpetual newborns. Diabetes care for a child means nighttime blood checks, the equivalent of the nighttime feeding(s) that babies require. Babies outgrow this though, whereas D children do not. The younger the child at diagnosis time, the more likely you are to see zombie parents. The best we can hope for is technology which allows us a modicum of blessed sleep. Then diabetes is all like "No-No-No!  No sleep for you!" The CGM (Continuous Glucose Monitor) can fail (which means a lot of us wake up anyways just to make sure its still working); it can produce false data which buzzes in the middle of the night (CGM: Hypoglycemia, take action now! Real blood glucose: Above normal non-diabetic values); or it can produce real data which requires action (up and down the stairs hour after hour to test blood, give glucose, give insulin later when sugar skyrockets from earlier glucose but hopefully not too much insulin which will mean the cycle starts all over again.)  Basically, kiss sleep goodbye. Now we’ve got to get up the next morning to go to work/school/events and somehow get our kid(s) and ourselves ready, then function at a normal level so we aren’t fired/sent home/crash the car/screw up diabetes care/forget our kids at school.  We apologize if we aren’t focused 100% on the description of your new handbag/car/job, but we were up every other hour last night.  We apologize if we can’t make it out to the bar/event/playdate, but we desperately need a nap.

 

• We have a stress like you can’t imagine.  Our kids’ lives are literally in our hands. Diabetes for most of the population consists of older adults who manage their own care, and many of them are on little to no insulin.  Children living with Type 1 diabetes are insulin dependent from day 1. For those years we need to take care of them, it’s a guesswork game of balancing every single thing they eat to match activity levels, along with hormonal shifts, sickness, and growth. If you don’t give enough insulin to match those requirements, they end up with hyperglycemia (high blood sugar). High blood sugars are what lead to those nasty complications that you hear about, like missing limbs, kidney failure, and DKA (which can lead to coma and/or death but at the very least requires hospitalization and horrible symptoms). If you give too much insulin to match those needs, your kid can literally have a seizure, crash a car (if driving), go unconscious, slip into a coma and quite possibly die. Talk about responsibility. There is no magic formula though for all of these factors, so we guess and hope that it all works out. This is a 24/7 disease which requires us to be at the top of our game every day, all day.  There was actually a study done which showed that one-third of newly diagnosed children's parents experience PTSD. Anxiety and depression can also creep up on us. The feeling of "Oh no, did I do that right?" to "Oh no, this is never ending, and what happens when I am not around to help out". We go through bouts of pity, for ourselves and for our children. We have to mentally drag ourselves off the ground and keep reminding ourselves that this is our new normal. It will get easier, but it will never be like it was.  Some people cope with that knowledge better than others.

• We don’t have normal relationships or outings. A lot of us live day by day, just trying to survive. We don’t have the normal date nights or vacations that many of our peers have. IF we are lucky to find a babysitter, we will probably spend at least half of the date night worrying and/or following up with that person to check on our child. It’s almost impossible to just let go and allow yourself to be in the moment. A lot of the night might consist of talking about d care or d child. It takes a conscious effort to set your mind aside from those discussions in order to allow yourself to reconnect with your spouse. A lack of babysitter options leaves even these date nights to be far and few between or non-existent.  A lot of marriages fail after a diagnosis like this, so it is extremely important for spouses to be able to reconnect as a couple instead of only parents. If they do not, there will be no remedy for the stress, which is not healthy for any relationship.  Vacations are generally more stressful for us than our home lives. You have to be sure to bring enough supplies for normal diabetes care, plus backups.  A child with an insulin pump has to have special screenings in an airport. Flying with a pump can lead to air bubbles in the tubing, so you have to disconnect your pump at takeoff and landing. You cannot check any d care items, so all of those items and backups are going in your personal bag or carryon. Going on a cruise (normal awesome) leads to anxiety about carbohydrate counts found in the various foods. Excitement can lead to high blood sugars (Disney anyone?), then there can be a rapid decrease in blood sugar leading to hypoglycemia (have you WALKED Disney anyone?).  If your child is on a CGM, you then worry about swimming, sweating, water in general (is it going to be lost in the ocean? The wave pool? Is the tape going to peel off? If tape peels off, do I have enough backup sensors for the entire trip?).  Did the insulin get too hot in this tropical paradise?  Did it get too cold in this arctic climate? Here, let me carry this diaper-like bag for the rest of my kids' childhood that carries the d-care essentials. What, you don't allow bags on a rollercoaster?  Now we've got to do a rider-swap and ride alone because there is no way I'm leaving that life-saving bag in a locker.

• We deal with ignorance and greed that is mind-blowing. (Yes I'm talking to you Dr.(!) J. D., owner of a certain drive-in movie theater in NJ). We shouldn't have to stop and worry "Is this shopkeeper going to let my child treat his/her low blood sugar or demand that we be removed from the premises for eating/drinking or bringing our own food?" I should point out that this happens quite frequently where businesses demand no exceptions to their no outside food/drink. My child has a strict amount of carbohydrates in a certain format that is easily and readily accessible. This is not a "snack", this is a life-saving preventative that we hope to not need in your business. It is not an excuse to consume food that wasn't purchased for 400% retail pricing after waiting in line forever. You are not losing anything allowing this treatment to happen. Conversely, if my child were to consume something on your premises from your premises that we had not been able to yet pay for due to foggy brain/long-lines, you would be screaming that it is theft (even with the intent to pay). You might be a small business, but what is stopping every business then from requiring us to purchase fast-acting forms of glucose from every single shop we might visit? Walgreens, Target, Wal-Mart, malls, sporting events, schools, gas stations, movie theaters, etc all have food on-site. Imagine having to go into a line first thing (even if just browsing), buy a huge pack of Skittles, then have to shop around and re-enter the line later to make your actual purchase. You haven't eaten the Skittles but now you need to stop at another store. You have to leave that one in the car and go into the next store, only to repeat. (But wait, if you are in a drive-in movie theater, the owner is making you throw away what you brought for lows during the drive!) Businesses claim that by being a "small business", it is financially hurting them to not purchase glucose from them and that we shouldn't receive special treatment. When your business has the news media come to your location because you denied my child entry due to their Halloween-sized candy, that will be financial hurt. Our children did not choose this life.  Don't even GET me started on insurance coverage and denials. Some insurance companies require that your child have several documented episodes of medical intervention or seizures before they will cover items like a CGM. Their cost analysis is literally we-will-make-you-prove-that-you-are-going-to-cost-us-more-in-ambulance-fees-than-in-CGM-costs.  Better yet, your A1C (a diagnostic tool that measures average glucose) is now "healthy" so we will no longer cover your CGM. Umm, the reason it's so "healthy" is because we are ON the CGM!

• We struggle with money. Even if we make enough money, we always fear not having enough. We fear not having enough money to pay the insurance premiums, enough to pay our deductibles, copays, coinsurance, etc. What if my zombie status or my sick child makes me lose my job? Will I lose my family health insurance?  What if my insurance stops paying for X? Do I make enough money to pay for it out of pocket? What if someone thinks this CGM receiver/pump is an iPod/iPhone and steals it? Chances are that even if we are able to make those payments for everything, we are missing out on something else. That might be a vacation or getting rid of cable.  Something in our lives is not as it would have been if not for d-expenses. There is always a trade-off somewhere. Quite a few of us have stockpiles of d-care items, just in case. We all do the we-have-insurance-now, so we-have-to-maximize-it-for-those-What-If-situations (or for a (real) zombie apocalypse/doomsday scenario, whereas you do not want to be near a pharmacy because all the other D-parents will be raiding them for insulin).

• We cry (or frequently want to). A biggie for us personally: generally we (d-parents) say that our d-kids can eat whatever they want, as long as they bolus for it....and generally that is true. Except when it isn’t. Most of us have a list of forbidden items, such as waffles, high-sugar cereals, cotton candy, etc. If your child has high blood sugar to start with, you do not want your child to eat a carbohydrate heavy item. It’s sort of like being on a diet, except if you “cheat”, your consequences can include loss of eyesight (retinopathy) or dialysis in later life.  So when we see our kids longingly staring at the fried funnel cakes, we know that 6 hours of high blood sugars are just not worth it. When the kids next to us walk by with giant pixie-sticks, I know that’s not a possibility for my child. Sure, my kid will most likely be healthier for not having it (diabetic or not), but it’s the ability to eat it carefree that I die-a-little-inside over.   Others might feel that way over sleepovers, sibling jealousy (either d-kid gets jealous of non-d siblings, or siblings jealous of attention d-kid gets), bullying at school, struggling to get schools to comply with ADA requirements (last week a school made a d-student eat pizza out of the TRASH because they were out and she already had insulin for it. Trash?! Proper training would have never allowed that to happen.)

• Our hearts break frequently. It’s the pain of seeing your child in pain. Let’s face it, NO ONE wants to be stuck with lancets 6-10 times per day on their fingers. No one wants to have either needles being stuck into them every time you eat, plus a few extra to account for a long-acting insulin and any high blood sugars. No one wants to have IV sized needle/cannula systems being inserted into their fatty spots every 2-3 days (pump) and/or every 5-7 days (if it lasts that long for CGM’s). My own 3 year old starts crying and screaming the moment we pull out all of the equipment for a CGM or pump change. She runs when it’s time to check her blood. We’ve played games, distracted with TV, gave rewards, etc. It got easier for a bit but then diabetes burnout happens to the best of us, including 3 year olds.  When they start getting older and ask you why they have diabetes and will it go away when they turn X?  Watching their little faces as you explain to them that “No sweetie, this will be with you the rest of your life”.  That is a pain that you don’t want to have to face.  We are currently doing no stomach sites for our daughter's pump, because I am so afraid that the scars will remain from years of site changes.  I don't want to have to face her when she is a teenager, crying because she thinks she looks horrible in a bikini due to the plethora of circular scars mottled across her stomach.

• We cannot STAND comparisons, know-it-alls, or being blown-off. Remember everyone, to assume make an A** of U and ME.
• Don’t assume that our kid can’t eat it. Unless you ask, you don’t know. While I might not let my child eat cake every single day, I would quite possibly make an exception at a birthday party or let my child have ice cream after a heavy bought of play. Conversely, don’t give my kid items without telling me ahead of time. Assuming that he/she can have ice cream and just giving it to them is not the same as my dosing insulin for it beforehand, allowing the insulin to start working first, and then carefully portioning my child’s snack to fit the amount I dosed for.
• Don’t compare my child to one that has another disease. We hear “Well at least it’s not cancer” quite a bit. Yes, we know that things could be worse but do we need you to remind us of that? We still wake up every morning thankful that they survived through the night. Some parents aren’t as lucky as that. They both have stresses that you cannot imagine so please don’t make that assumption for us. 
• Don’t send us the latest Facebook post/e-mail chain about how Okra water/cinnamon/moss will cure my child. Type 1 diabetes is an autoimmune disease whereas their pancreas is all but dead. Okra water will not revive it because within my child’s body there are killer antibodies that attack healthy cells. So even if/when they are regenerated, they are killed off again so quickly that it doesn’t even matter.  They will never outgrow it, even though it’s previously known as Juvenile Diabetes. One of the reasons they changed the name is because juveniles grow up into adults but still have the disease. They don’t transform into diabetes-free individuals or suddenly label themselves as type 2 (metabolic diabetes). It used to be called Juvenile Diabetes because it was juvenile children that were being diagnosed most frequently with this form of diabetes. Quite a few parents also notice your choices in diabetes humor, such as those picture meme's showing a high sugar item that states it's name isn't Kit Kat Lasagna, it's Diabetes. It's all fun and games for you, but let me remind you all that I was not a d-parent either the night before my child was diagnosed. I hope that you never have to know and live diabetes.
• Don’t tell us that you know ALL about diabetes because your sister’s friend’s aunt had it and you went over to there house one time and watched her get a shot. Likewise, your grandmother’s leg was amputated so if my child eats that cookie then they will have complications like that and I am horrible parent to let them eat that. Even Type 1 patients are not alike. My child might only take 6 grams of carbohydrates to treat a low blood sugar while the teenage boy around the corner might need 20 grams. Around 90% of diabetes cases (or diabeetus for the Wilford Brimley generation) are considered Type 2 and are metabolic in nature. In other words, their pancreas still produces insulin but the body cannot use it correctly for some reason. How much their body is able to use is what determines their treatment options, which is why you hear of some people taking pills only, or one injection only.  The overall supplies are the similar/same as Type 1 but the mechanisms that cause it are completely different, so unless you have extensive personal training in Type ONE diabetes, you do not know-it-all. Even Type 2 diabetics and doctors get it wrong a lot when it comes to Type 1 diabetes. 
• Don’t make statements like “But he/she’s not fat”, or “get him/her to lose weight and he’ll/she’ll lose the diabetes too”, or worse yet “You shouldn’t have let him/her have candy, then he/she wouldn’t have gotten it”.  Type 1 diabetes has nothing to do with weight or eating habits. There was nothing we could do to prevent it, and nothing we did to cause it. Saying these things only make us feel badly because our only options are then to sit there and take the ignorance, or defend ourselves (and kids) and embarrass everyone. Meanwhile, I’ve got to go home and explain to my child (again) why they have diabetes, that it’s not something they/we did, and not something they can get rid of. But thanks for giving my child a complex, false hope, or eating disorder.  (Diabulimia is a real disease, please Google it.)
• Don't tell me that my child should test blood/give injections in the bathroom. If you would not be willing to eat your own food in there, why should my child be exposed to bacteria through an open wound? We will strive to make this part of our daily life as minimally noticeable as possible, but we can not completely hide it. So please, look away because you do have the option to avert your eyes. I'm sorry if you do not like blood but neither do we. We have to do this, while you do not have to look.
• Don’t assume that my child cannot do what other children do. We might monitor it more closely than other children, but they are still out there enjoying childhood (as they should!).  We may request special accommodations occasionally for them (I mean, insulin as a medication is not like a Tums. If they wait too long to eat, they can go unconscious or have a seizure), but that doesn’t mean they can’t play X, or do Y.  The US Supreme Court currently seats Sonia Sotomayor, who is a Type 1 diabetic. The Chicago Bears have Jay Cutler as their quarterback, also a Type 1 diabetic. Olympian Kris Freeman cross-country skied his way to Sochi in 2014. They can do just about everything your child can, with only some minor limitations later in life regarding choice of career (mainly active military and some driving occupations).

Note: Not all diabetic parents may feel this way about every single point. Some have amazing support systems already in place, have lived through it long enough they’ve adapted (finally), and/or have a personality type that was forged in iron.  A lot of us though are nodding our heads as we read through this and hope that those parents of non-diabetic children or those without children can begin to understand our world. We love our children and hope for a cure every single day. The day the cure is announced, listen for the whoops and screams originating from somewhere nearby you, as we race to tell our children that they can live their lives without fear of not waking up in the morning, or going through thousands of needle pokes per year, or being on a first-name basis with the local fire department/school superintendent/doctors’ office.  If you want to aid us in making that a reality, donate to www.jdrf.com.

Initial Diagnosis Must Haves

Someone we know of recently had their son diagnosed. I was thinking about what I would have like to have known would be needed once we arrived home. I slowly collected items over the first few months but it was all gathered from different ideas scattered all over the internet, as well as books I was reading in between my fuzzy eyed 2am blood glucose checks. So I thought I’d be super convenient and write a Best Of list for those parents who are facing the new reality of the diabetes life.

1. Sharps container (We get ours free at our local fire/health departments). I   also purchased a small one for the car.

2. Fast acting glucose: Capri Suns; Apple Juice boxes; Jelly Beans (1g per); Level Glucose gel packs; QuickSticks (Walgreens), & 15g Snacks (such as protein bars).

3. Supply on-the-go bag – We received a free one but quickly opted to get a makeup bag that had separated compartments.

4. Supply organizer for home counter– It’s like Caboodles makeup counter organizers were made for D supplies. (see other post where I outlined what we keep in ours)

5. Supply organizer for cabinet – I bought a plastic bin that had three layers. I stored extra syringes, lancets, meter control solution, extra meters, meter instruction manuals, extra alcohol swabs. (In the beginning before your stash grows, you will likely only need a bin. Later it’s a bin plus an entire cabinet in your kitchen)

6. D care items: Alcohol prep pads; syringes; insulin, testing strips, glucose meter, lancing device/lancets, ketone strips.
        a.  I am a big fan of Accucheck FastClix lancets. They come in a barrel so you never see the lancet. They come with the Accucheck Nano meter (which we received free from Endo).
        b.  We also like the Contour Next USB meter/Strips. The accuracy is among the best, the USB is nice to plug in, and it is conveniently on our insurance’s preferred list.

7. Other D care items we received/purchased: CalorieKing carb book (buy an extra for the car!); Precision Xtra Blood Ketone Meter/Strips (So you know exactly what the level of ketones are; especially helpful if your child isn’t potty trained); an insulin koozy which protects the insulin bottle if you drop it because it smells bad and is a very expensive mistake versus a $7 vial protector. (Amazon)

8. The Pink Panther book is great, but some places only give the smaller edition. We were lucky enough to also receive the expanded edition from a relative and highly recommend it. I would save the abbreviated version for other care providers who will need to learn a bit about diabetes but not all-day, every-day care. We also supplemented with Think Like a Pancreas; Guide to Accurate Carb Counting (both) by Gary Scheiner, CDE; Kids First, Diabetes Second by Leighann Calentine.

9. A decent digital scale. Soon you will be learning to carb count and until you are able to eyeball serving sizes in your sleep, you will need a scale with at least the tare feature, as well as ability to measure grams and ounces.

10. Lo/No Carb drinks. Your kiddo will suddenly have to account for every carbohydrate gram going into their mouth. Those previous cokes, Capri suns, and orange juices will have to wait for treatment of lows. The new game in town is lo/no carb drinks. Our favorites are Minute Maid’s Just 10 and Fruit Falls juice packs, Aquafina FlavorSplash, VitaminWater Zero, Powerade Zero, Crystal Light (powders or liquid), Mio, ICE flavored water, V8 Light Splash. You can of course get diet sodas, teas, etc that are low in carbs.

11. Carb log book. Personally, I hated the ones that came with the meters. I bought a spiral notebook style daily calendar. It has a lot more room to write. After a bit you learn that it’s essentially TIME; BG #; CARB #, INSULIN UNITS. You can add in variables next to it if you want, such as exercise, foods, etc.

12. A 3 ring binder (2" or larger) with clear page protectors. I made a cute one that I keep all the handouts from the endo in, such as carb counting basics, ketone info, daily logs they require before visits, illness guide, symptoms of high/low BG, etc.

Does this seem like a lot? No, it's really not too bad! Just a trip to local pharmacy (for D care supplies, your MUST must have), a Walmart/Target, and a foray on Amazon.

Walk to Cure Diabetes

 

It's time to pump up the excitement for the 2014 Walk to Cure Diabetes! JDRF holds walks all over the country to benefit the research to not only improve, but CURE type 1 diabetes. This is our first year doing the walk. Our Orlando team is named Benjamins for Miki's Mouseketeers, in homage to my daughter M and my cousin Ben, who passed away at age 17 from T1D complications. I made up the above picture to kick-start my fundraising campaign. This photo, taken less than 2 weeks after her diagnosis, really shows exactly why I am so invested in this. She is pure joy. If you would like to donate, please click on the above link to be directed to our page. Donations are due before June 30, 2014.

 

 

UPDATE: We started out with a goal of $1,000. We ended up with $3,075 as of the walk date. We had a few business associates donate, as well as our wonderful friends and family. Women I went to high school with (and haven't seen in over a decade), as well as my MIL's gardening internet club members all donated. I am overwhelmed by the generosity of the emotional and financial support we received for this year's walk.

THANKFUL

     In light of the month of November, as well as Diabetes Awareness Month, I wanted to take a moment to say the things that I am most thankful for, as related to diabetes. (Of course, 30 things for the 30 days of November).

I AM THANKFUL:

1. That my husband has a job that enables him to take time as needed to go to Dr. appointments and the miscellaneous things that diabetes throws at us. Years of working 50-60 hours per week are now paying off.
2. That my husband has a job that enables me to be a stay at home mom and allows us to have the ability to pay for the best care available for diabetes.
3. For our pediatric endocrinologist and his diabetes education team. Every single person I have met in the local D community or fellow doctor raves about him and for good reason. Unfortunately I’ve heard he’s stopped taking on new patients because his existing ones are so numerous. (Not for sure though). Also one of his diabetes educators is a fellow D-mom, which makes me really feel that someone TRULY understands what we are going through. She was also our nurse when M was diagnosed, as she was in her last weeks in the Special Care unit before she left for the pediatric endocrinology office.
4. For the Dexcom technology which has already saved my daughter’s life at least once. If only this had been around 13 years ago, my cousin’s life wouldn’t have been forfeited to D.
5. That my daughter was able to receive the pump less than 2 months into her diagnosis because we weren’t able to dose her properly before.
6. That I was already pregnant when she was diagnosed, because I always wanted several children and I don’t know that my husband would have agreed to a second child after M’s diagnosis. It is an emotional and financial strain you cannot be prepared for, one that you want to give everything for and leaves you in doubt that you have the strength for anything else.
7. For the TrialNet program that will test our newest child for the possibility of D.
8. Although she is so little, in a way I am thankful that she did get this so young because she will never know a life without it so everything will be a way of life for her instead of a huge change.
9. That she is rather protected in her young age against diabetic complications from high blood sugar. We are still figuring out dosing and foods and would be that much more paranoid about everything if there was a huge possibility that she could have permanent damage for our mistakes.
10. That we even have insulin. Before 1922 my daughter would most definitely already be in the grave right now. She is such a bright light in our lives, I hope I never see it eliminated.
11. That my husband is on top of everything with d-care. I trust him to make decisions in her care as much as I trust myself. With as much stress as there is in having a toddler with D, it is such a relief to be able to escape the house on occasion and not worry about anything d-related.
12. That my daughter is a good eater, which means that we can bolus her before a meal and know that in one way or another we will meet her carb count. Toddler’s are picky eaters but she is pretty steadfast on eating a variety of food and a good quantity of it.
13. That she is as patient with us as she is. She lets us do her blood checks 90% of the time with no fuss, and the other 10% is normal toddler behavior of not wanting to sit still while we take her out of the action for a check.
14. That my family knew all about diabetes before this. Unfortunately my cousin passed away from a low in 2000, after which my mother was a fanatic about any d-like symptoms. She even kept the urine strips in the house to test my younger brothers on occasion. So I knew the signs of diabetes and it helped me diagnose my own daughter.
15. For a great online community of fellow d-moms and dads who share advice. The early months were like a black hole for us and we spent a lot of time online researching about the disease, tips on care, advice on products, etc.
16. That we are getting free speech therapy through a state program for developmental delays. Hopefully this will get her back on track from any delays D contributed to.
17. That my newborn daughter is such a good baby. Minimal fuss and a great sleeper. Since week 5 she has been sleeping 7-9 hours per night. It is such a relief, especially since M didn’t sleep more than 4 hours straight until nearly 6 months old. It allows me to stay (relatively) sane and not sleep deprived, which would make it so much harder to take care of M.
18. For our extended family. My husband’s cousin sent us the expanded Pink Panther D book after we finished the abbreviated version our Endo gave us at diagnosis. My aunts and uncles all do fundraising for JDRF, and have done so for over ten years already. One aunt is on the board of her local JDRF chapter.
19. That I previously held a job in a medical office, where I did medical insurance and appeals. It has aided me so many times when dealing with hospitals, Dr. offices, and insurance companies. You cannot believe how many denials I’ve had to fight in the past while working, which in turn sharpened my skills for personal use. Also now that our health coverage is being cancelled due to Obamacare, it is aiding me in knowing exactly what pros and cons each replacement plan has.
20. For the other parents of Type 1 kids who have developed products for D kids, such as insulin pump pouches in cute fabrics fitted to their tiny waists or custom D alert bracelets. Adult sizes and patterns just don’t work for kids.
21. For the restaurants that actually provide carbohydrates counts for their foods. (Cracker Barrel, you are really disappointing).  Some are really great at this, even though their food isn’t super great for you. McDonalds labels EVERY item in the Happy Meals with carb info, and IHop has a nutritional menu you can ask for. Chikfila even stores their carb info inside their registers, with a printout available for any item on their menu. Others have the information on their websites or have provided it to other websites. Hardest are the mom-pop type places since nothing is standardized or analyzed.
22. For organizing products that can be used for D products. So far I’ve used a Caboodles makeup organizer as our main D supply station (see other post), a makeup bag for our D supplies on the go, another makeup bag for our emergency carb stash in our car. Glass tumblers we use to amplify the vibrations of our Dexcom alerts, and a three-tier plastic container holds extra pump batteries, syringes, test strip solution, and extra meters.
23. For our local fire and health departments, who provide sharps containers free of charge. We can also drop them off with no charge.
24. For the website I just stumbled across, safesittings.com. I don’t know how I didn’t find this sooner than I did with all my research on Type 1 diabetes and resources for it. We don’t have a lot of sitter options so this could well prove a godsend. We have already started initiating contact with a local young woman with Type 1 to become our backup sitter.
25. That my mom moved up to our area last year. She couldn’t stand not being nearby after M was born, so she picked up and left her house, job, and community that she had been a part of for over 25 years. Four hour drives were way too much and I am so happy to have her here for support.
26. That my husband’s mom is so committed to being able to keep M for future grandma visits that she even started counting her own carbs to be able to better learn D care.
27. For the pharmaceutical companies who supply vast quantities of samples to their reps. We have received insulin, test meters, a ketone meter, recipe books, and more free of charge. We spend so much money on D care that it is nice to get something for free! (Even if it’s only so we spend money on their products in the future….yes, I have a marketing degree, I know how that works lol).
28. That we live in a country with great access to care, as well as economic prosperity. Type 1 kills untold numbers of kids in poor countries because their parents do not have the ability to see a doctor for a diagnosis. They do not have the internet to discover the cause on their own. If they are fortunate enough not to die of DKA before they are diagnosed, then they may not have the money to pay for the newer insulin which is more predictable, or perhaps any insulin at all. They may not have the money to pay for test strips, let alone insulin pumps and CGM’s. I shudder at the thought of not having every single thing necessary to care for my daughter.
29. For smartphones and the ability to peruse the internet in a restaurant, or out and about. Having access to carb counts in foods, or contact numbers not previously stored in the phone are so very helpful. Bye-bye pager, I haven’t missed you at all since you’ve been gone.
30. For my friends who have supported us through this diagnosis. I can vent on Facebook or over the phone and know that my friends will be there. Even having a distant friend clicking “Like” on a post is a great comfort because it means that people are listening and understanding what I am going through. When you feel alone on an island, it helps to know there are at least people on the mainland still waving to you.

The Dreaded Dexcom Rash

     If you’ve read my previous posts, you already are getting a sense that I LOVE our Dexcom. It is literally a life-saver and we are way too paranoid to not know what our daughter’s blood glucose is doing at any given time. (The saddest country song has it more together than my daughter’s blood glucose stability).  So suffice to say, about a month ago we pulled off her Dexcom and noticed it was really bumpy/scaly underneath. I  thought she might have a bit of dermatitis from the tape, so I scrubbed it extra in the shower and forgot about it…..until the next site change. Her other arm under the tape looked like a chemical burn. It was weeping, raw, and angry. We have always covered the Dexcom tape with a layer of Opsite Flexifix and the wound was only under the area of the Dexcom tape but not under the Opsite which extends way beyond the perimeter. (We live in FL, our daughter is very active, and she’s a sweat-er so we've done Opsite each time around the borders). We went back to the arm that originally had the bumps (which had turned a bit pink after scrubbing) but a week later we pulled it off and found another weeping, chemical burn-looking wound that was even worse than the first one. I try to take most things in stride but all I could think about was my daughter as a teenager and young woman having scars on her body from years of adhesive allergies. It made me determined to find a solution.   (BTW - in case you are curious, it took about 3 weeks for the burn-like wounds to heal and the skin is still a bit rough in the area. The worst arm looks like it has a white coloration instead of pink/red. If you've ever worked with burn patients or have been burned yourself, you know that burns start red/pink and fade to white as they heal. It took a couple of months for the white to go away.)

About 1 week after "burn" wound from Dexcom adhesive

• So we tried her stomach next along with IV Prep underneath but she is very lean in the area and the sensor failed within 30 minutes. We googled Dexcom rash and Holy Toledo(!), the images looked identical.
• Next we tried her leg with the Dexcom tape placed on top of two layers of Opsite with a hole cut in it, along with the Dexcom tape trimmed down, then covered with another two layers of Opsite (with a hole for the transmitter). We also stopped cleansing with an alcohol wipe and started soap and water to reduce dryness. When it came off a week later, it looked better. Slightly purple underneath the square of the Dexcom tape (the new shape we had trimmed it to). However, when I attempted to clean it with a washcloth, the skin sloughed off to reveal pink underneath which meant she was still reacting to it.
• Next up was a double layer of Opsite underneath with no hole cut out, I punched through the tape directly with the Dexcom sensor so that the adhesive has even less opportunity to come into contact with her skin. Again I trimmed the Dexcom tape and sandwiched it underneath another two layers of Opsite. It wasn’t a complete success because the site turned pink underneath the next day. We decided to stop it on day 7 from now on.

    Somewhere in the deep crevices of internet advice I stumbled upon one or two recommending a blast from an asthma inhaler before applying the adhesive. The theory is that the corticosteroid of an asthma inhaler inhibits the allergic reaction of the tape. Creams beforehand would not allow the tape to stick at all, so you have to think outside the box. Hence, an aerosol format. Makes sense to me! So I brought it up while getting her flu shot from her pediatrician and he sent me home with a sample. Yippee! I love not fighting with Dr.’s about weird remedies like that. I also had heard rave reviews about the Johnson & Johnson tough pads working as a barrier underneath.

So after months of doing the above regiment,  we added a barrier wipe.  We also rotate between both arms, as well as 2 areas on both legs. Belly is still out of the question due to her being too lean and the amount of ???.

We currently have the following system and takes an additional 5-10 minutes:
- Clean w/soap & water
- Spray asthma inhaler Qvar 40 (or Flonase, a nasal allergy spray recommended by her Endo)
- Doughnut swipe with IV Prep (Minus "doughnut hole" where sensor wire punctures through skin)
- J&J Tough Pad
- Dexcom (with adhesive trimmed to fit onto Tough Pad without getting near edges)
- Wipe edges of both Dexcom G4 tape and Tough pad down with more IV Prep (to aid in sticking)
- Strips of Opsite flexifix tape down the edges of Dexcom/tough pad.
- One more strip that I place on the very edge of Dexcom transmitter (fat end only). I overlap a bit on the transmitter, the plastic casing, and the rest is on the adhesive. I do this along the back end then fold the opsite towards the body of the Dexcom (like a fat "U" shape) so that there is no gap between opsite and the transmitter.
-(Extra summertime fun requires vetwrap to help prevent tape from peeling. If you need help keeping the vetwrap on, make sure you tighten enough that you can fit a finger underneath the stretch but no more to where you are cutting off circulation or causing a compression low. Then secure the ends with a butterfly bandage.)

To remove the system on day 7, we use Unisolve to make sure all the adhesive is wiped off, then we wash the Unisolve off.  Apply a good moisturizer.

Updated 7/2015:
The moral of this update is to not give up on the CGM. Because so far so good! We tend to rotate between 4-6 separate areas so that we do not reuse a site more than every 4-6 weeks or so. Compared to the previous chemical burn reaction though, we'll take a bit of pink bumps for those few times it gets a bit more irritated (and usually only notice a reaction to the Opsite Flexifix IF we have to re-do the tape at any point during the 7 days. If we don't add the IV prep/Qvar step underneath the Opsite, it seems like she turns red underneath the Opsite for a day with itching.) But overall, we have been using this system for about a year and a half now and found that it works as the only solution that will allow us to continue using the CGM. We rarely, rarely have failed sensors even with the IV prep and Tough Pad underneath. (I mean like maybe 1 per 6 months, if that?). And even better, Flonase is now available OTC so if you are unable to get the Qvar 40 from your doctor, just try the Flonase. It takes a lot longer to dry since it is liquid, but still worth it!

Update 7/17: We have decided to replace the Opsite Flexifix with the new Stayput Medical patches. We just weren't happy with the slight irritation left over from the Opsite and always had to ensure the edges weren't peeling up. We tested the Stayput patches for both our Omnipod and Dexcom sites and she hasn't reacted at ALL, which is fantastic. Also it has helped with the water issues we were having, we'd constantly worry about her in the pool or bathtub and if the Opsite would hold. The Stayput really do stay put, so in sweaty Florida weather, it has been a relief to not worry about an early site change from adhesive issues. They seem to be a bit bigger than some competing patches, which the smaller sizes and shapes of competitors like Grif Grips didn't seem to cover much skin outside the device adhesive and thus deterred us from bothering with them. So yay for something that works and isn't an allergen! 

Catching Lows, Chasing Highs

     They say you often know your kid is getting sick possibly even days before real symptoms start because of how their blood sugar reacts. M was sick, including throwing up in the middle of the night & massive blow-out diapers. This was the first non-"cold" sickness she’s had since developing diabetes and it threw us for a loop. She started off by being high a couple nights in a row, which is hard when you are a D parent because you don’t want to give them too much insulin and have them drop to a low in the middle of the night, but yet you also don’t want them to stay high either. We always err on the side of caution and give half-corrections but those couple of nights the insulin just wouldn’t cut down the highs. (She was hovering between 250-300).

 

     In the morning (after discovering, then cleaning up the vomit), I checked her ketones and moderate ones (1.6) showed on our nifty Precision Xtra ketone meter. (Great for non-potty trained toddlers!).  Right after I called her Dr.’s office, she had a blow-out diaper. Per the doctor, checked ketones an hour later and it was down to 0.1. “That must have really cleared her system”, I thought. I called her Dr.’s office for an update and again, right after I hung up, another blow-out diaper. Greeaaatt. 3 pairs of jeans later, she was finally good on her blood sugar. Until we noticed that now she was having lowered blood sugars. I mean like sugars that were normal for a normal person(!) but head scratching for our daughter, who is still getting her treatment doses dialed in.  Then 4 hours after a meal, she would suddenly start climbing on the Dexcom. This went on for a couple of days until she started a pattern of going low instead of just staying in the normal non-diabetic range after a meal. Nothing too dramatic but still a 67 during naptime is never ideal, especially with a newborn in the house and limited time to get things done. Naptime is my only possible time to potentially be by myself, have a bit of quiet, read a book, be able to eat without stuffing it down my throat, or even, dare I say it, catch a nap myself. (I say potentially because with a newborn this doesn’t always work out). So I treat the low, which means the 15/15/15 rule. (15 grams of fast acting carbs, followed by a 15 minute wait, followed by 15 grams of snack if blood is above 80 by then). Well by the second blood check and giving a snack, no toddler is going to lay back down afterwards. This went on for almost two whole weeks, a full week past any physical "sick" symptoms.

 

     I talked to the diabetes management team at our Dr.’s office, who stated that there isn’t much research regarding lows during sickness, but that they have heard from parents of them sometimes occurring. For as much as we’ve learned about diabetes since the commercialization of insulin in 1922, we have so much that we still don’t know!

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!