Watching Siblings Like a Hawk

My T1 daughter was diagnosed just shy of 23 months old. Her symptoms started just after she turned 22 months old and while I realize she was little, I didn't truly think about HOW little until my other daughter turned 22 months old. I look at this little body and can't imagine doing all the things we had to do for our other daughter. Perhaps its because we HAD to do them no matter what? Maybe I stuffed my guilt far enough down that 2 years later I've mentally put a block on the worst of it?

But then I start thinking....my other daughter is now at the age my first daughter was when she was diagnosed. Has the waiting game started? Is it only a matter of time before she becomes diabetic as well? It was almost a mini-mourning session again for me as my 2nd daughter turned 22 months old. This past month the thought continually runs through my mind, what if? What if my other daughter is diagnosed soon?

In some ways, watching my second grow up will be a lot of firsts for me. She already is speaking 15x more than my first daughter did at this age, simply because she's had the glucose available for learning new things. So far, she won't have to worry about extra potty breaks, needles, soaking her bed, sleepovers, babysitters, carb counting, eating foods in the best order for minimizing blood sugar spikes, waiting for food until insulin peak time matches, cannulas, Dexcom alerts, school issues, etc. She is young and carefree and in her I get to experience parenting a young and carefree child.

Yet, there are a lot of emotions when I think about my second daughter:

• Happiness, because (right now) I don't have to worry about her dealing with the multitude of issues that come with daily diabetes care, both for her sake and mine. I know that when she gets sick, it isn't potentially life-threatening. I know the medical expenses aren't going to add up every single year, that I can send her to school and not worry about her. If I needed to, I could find a daycare who would accept her easily, or find a babysitter for her without an in-depth training session first.
• Guilt, in part because of my happiness. I feel guilty for feeling so happy that I have a "normal" child without special needs. Diabetes is just.so.hard., and I need a respite sometimes. But to get that respite in the form of a child of mine that doesn't require 24/7 care? G.U.I.L.T.  I feel like I will be slapped any moment with a crimson letter to wear for feeling these traitorous thoughts. I love my T1D child. I love every little piece of her. A diagnosis would never change that. But does that mean I don't wish she never had it? What parent would ever choose this for their child? Every parent awaits that day our children will be cured.
• Fear. Oh the fear. This is the part that has me questioning everything. Did she just ask for extra juice/water? Is that a diaper rash? Does her diaper feel extra soaked this morning? Is she getting sick? (IE: Did the trigger event happen?). Maybe I should just check her blood just in case. An 84 for fasting, score!!! (Back to happiness, then guilt). But I will continue to Watch.Her.Like.a.Hawk. Always.
• Hope, there is always, always the hope that she will not be part of the statistic that shows an increased risk for siblings of a T1 child to also be diagnosed with it. Most parents hope for many things for their children, but having their top hope be that their child doesn't receive a life-long disability generally isn't one of them. In our house though, this is an actual thing. I HOPE with every piece of my being, that she doesn't have to go through what her sister does. I can't protect her from it, I can't stop it from happening, but I can certainly carry hope that she'll never get it.
• Empathy, for my T1D who now has a little sister who is different than her. She will watch her sister not receive the pump changes, Dexcom sites, finger pricks, or have to count (or wait for) her food. The diabetes stigma won't be there and she won't have to sit on the sidelines waiting for a blood sugar to come up or go home early because she has ketones. I also feel empathy for my non-diabetic child, because of the attention that is bestowed on my T1D. I already feel badly how much attention my husband gave our first born vs. our second. My daughter was diagnosed when I was pregnant, so my husband made it his mission to shower our first with all his attention while I nursed and cared for the newborn. Except now my youngest is nearly 2, and my first still gets the lions share of the attention. It's not on purpose. Think about how they always say that the first will have a million pictures taken of them, while the subsequent children are lucky to have a single album. It's so true but add to that a medical diagnosis that forces you to focus on medical care 4-8x per day for one and not the other, and the attention (even if it's not all daisy-chains and sunshine) starts to stack up unevenly. We are aware and try to make it right, but there is a reason a lot of d-parents are referred to as helicopter parents to our d-children.

So for now I will continue feeling this way, who knows for how long. I'm resigned to the fact that it could happen, and my other daughter could be diagnosed. We are finished having children, in part because T1D is as time consuming and expensive as having a third. Right now 50% of my children have special needs and all it takes is one more diagnosis to jump to 100%. I am going to actively try to not think about this everyday or every week, but I know myself and will be grabbing that meter whenever there is a possible symptom. To all the parents with more than one diabetic, I SALUTE you. R-E-S-P-E-C-T. But I hope that I never, ever join your ranks (just as I know that you hope I never do either).

The Worst Kind of Post



This past weekend was a major blow to the Type 1 Diabetes Community. We lost two little kids to complications from undiagnosed type 1 diabetes. One was Kycie Terry, 5, who suffered a traumatic brain injury due to brain swelling from DKA (Diabetic Ketoacidosis) in January 2015 and succumbed to complications on July 11, 2015. A day later, we learned of David Brown, 4, whose DKA case was too advanced and he succumbed within days of initial diagnosis.

 

Unfortunately, these two cases are just the latest in a long line of undiagnosed children becoming casualties due to a lack of awareness of Type 1 Diabetes symptoms, and a tendency for doctors to avoid looking for the "zebra" amongst the horses (flu, bladder infection, viral infections, stomach viruses, asthma, sinus infections, UTI's, dehydration, anxiety). Here is a video from the parents of Rocco Kuehl, a Florida boy who had just celebrated his 1st birthday. His parents have set up a charity Drive for Diabetes Awareness in his honor to raise awareness of type 1 diabetes. It is heartbreaking to hear these preventable stories.

 

 

 

 



Something has to give. Over 1.25 million Americans live with Type 1 diabetes, and the rates are growing at a staggering percentage. There is no known cause or cure. Type 1 diabetes is too often a "silent killer" of not only youths, but also adults. This is not type 2 diabetes, and this is not something to laugh about.

 

How is it possible that so many people are still dying in a first-world country from a condition that can be diagnosed for pennies??  Doctors will swab for sore throats, urine is collected for UTI's, ears are checked for possible ear infections. Why are we not checking glucose with a single drop of blood or a urine dipstick for kids who present with these symptoms? Flu-like symptoms in diabetics means they are already progressing into a dangerous complication, known as Diabetic Ketoacidosis (DKA). DKA has symptoms such as breathing issues, fruity smell to their breath, vomiting, stomach pains, dry mouth, in addition to the classic diabetes symptoms of excessive urination (frequently shows as bed wetting in younger children), extreme thirst, sudden weight loss, extreme tiredness/lethargy, increased appetite (although can also present as decreased appetite).  Don't guess, CHECK!!


This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!



This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!

For more information on DKA prevention and more posters available for download, visit www.testonedrop.org

So Insurance Wants to Deny Your CGM (or pump?)

     I am a part of multiple Facebook groups for diabetes support (otherwise known as part of the DOC, diabetes online community). Throughout these groups I see a constant trend: Insurance denials for type 1 diabetes pediatric patients. This drives me bat-crazy. Literally bonkers. I cannot find the justification for denying life-saving/changing technology to these chronically ill children. I cannot tell you how many denial reasons I’ve seen from insurance companies scattered throughout the country (USA). Sure, some are state insurance/Medicaid, but the majority of the denials are from private plans which have hefty policy premiums on them.

     So a few years ago I decided to do something about this inequality. Insurance denies based on a numbers game. They imagine that 8/10 people will not appeal a denial decision, and the remaining 2 who appeal the decision are not competent enough to put up a good argument that is strong enough to sway a plan determination. That’s where I come in. I am a former medical office manager who dealt with insurance benefits and denials on a daily basis. Specific to diabetes, I have done the research for you for any number of pediatric denial reasons and create an appeal letter for you to use in your fight. Are they 100% effective? No, some insurance companies (I swear) do not seem to read the appeals the first few tries until a third-party eventually (actually) reads it and overrules them. But those insurance companies again are relying on people to give up and not realize that you have multiple attempts at appealing before the final determination comes. Some just have absolutely no benefits for a CGM (more likely with Medicaid products), so you are essentially arguing about something that isn’t offered which is a huge uphill battle and may need to be court-ordered. However, for the majority of (my) appeals completed, they are approved first-try within 30-45 days. What do I charge? Nada. I believe in karma, as well as the device, and know that with every child on a CGM, lives can be saved.

What Is Important to Know for Insurance Denials?

·     First, I am here to help! If you are on a private plan and received a denial for a CGM (Dexcom or Enlite) for a patient under 18, please contact me to discuss appeal options. (See below Disclaimer first).

·     Most insurance plans allow your doctor to request a peer-to-peer evaluation first. This has to be done prior to any written appeals. Your doctor will have a phone conversation with a medical doctor reviewing the denial, whereas they try to come to terms with why it might be medically necessary to approve the device. This works about 25% of the time, especially when it is for denial reasons such as no evidence of necessity/no evidence of hypoglycemia, etc. Your doctor may be able to give better info than the paperwork or refute that through other means.

·     Most states mandate some type of insulin pump coverage. However, they do not specify that it has to be the one you chose.  You may need to appeal a specific pump model if they require you to choose the lower cost pump model. This can be won, although it may take a lot of appeal attempts and is not guaranteed. Also, not all insurance companies have come on board with threshold suspend insulin pumps (those labeled artificial pancreas, such as the Medtronic 530g).  This device can be harder to fight a denial on, as it is newer technology and doesn't yet have the million research studies that insurances want to see before they pay out money. You can still appeal but keep in mind that it is based on both CGM and pump technology, so benefits for both need to be in place to have the best level of success.

·     If you max out on appeals and reach a final determination of not covered, you can start applying for the service/device all over again after the 1 year mark occurs (from the original application). So say you ask for a Dexcom on June 1st, 2015 and are denied. Appealing may last through November 2015. You can re-apply starting June 2nd, 2016 rather than November 2015 (or not at all). 

·    State Medicaid plans vary in coverage for Dexcom’s. Generally there are various plans administrators offered per state and they are NOT all the same. If you have state insurance and are denied a CGM, look into the other plan admins/providers. Some do not have any type of coverage for CGM’s while others in the exact same state offer CGM’s with no questions asked. Also, for state and private insurers, medical policies are updated yearly (often middle of the year), so you may not have qualified before (and were denied or told not covered) but are now eligible.  

·    Sometimes (sad to say), there is no coverage. As in, no coverage ever (or without a court order). This is not due to medical necessity, age, experimental, etc. I liken this to trying to order a burger at KFC. KFC does not have it on the menu. There is no code within KFC's system for a burger. They have no supplier for the beef. But you are demanding a burger. No amount of demanding will make it happen without "management" becoming involved. This is the same as an insurance company who has neglected/abstained from adding the CGM codes to their policy. They don't have the code in their system, it's not on the reimbursement schedule, and they don't have a supplier lined up to provide it. Appealing something that to them, does not exist on paper, is a tall order. There is the slight chance that an appeal will succeed, but that is something that few people are willing to do due to the amount of time involved. (It is easier to switch insurances, talk to HR, crowd-fund, pick up a secondary insurance, etc.) However, if you are not able to switch insurances or self-pay, then give it a try, just be prepared to exhaust your appeal attempts before giving up. 1x appeal/phone call is not going to overcome this barrier, but if you are prepared to put in the work, the chances of success are increased.

·     Some plans need a plan administrator from HR (for work-provided plans) to set up a revised policy condition specifically addressing CGM’s (or pumps) for that plan in order to be approved. No amount of appealing will overrule it if your employer has specifically denied access to the product in question. Only they can revise it, not the insurance. (This is a rarer example, it is usually not an issue with the employer). 

·    Sometimes the supplier gets it wrong. Shocking, I know. A supplier might say that you are denied the CGM or "it's not covered". What they might not continue stating is that it is due to them not having a contract with your insurance and that simply by finding a new supplier, you can be approved. It might be because you no longer have pharmacy coverage but rather DME, and as a pharmacy supplier, they are told no (or vice versa). You may not receive a letter from your insurance stating you were denied. Why? Because likely the supplier verbally heard no when they were making a benefits determination instead of actual application, therefore a denial was never generated by your insurance company. Therefore, you never receive a letter of denial. You should always receive one within a few weeks of "applying", otherwise, there is a strong possibility there was never an official denial by the insurance company.

·     You are entitled to know exactly why they are denying, and what information or policies they used in making that determination. You can request to be sent those guidelines/research studies that were used in determining their medical policy on the topic. You may find that they are denying due to a research study or industry recommendation that is 8 years old and has had opposite findings in newer studies/recommendations. Insurance companies only revise policy once per year and are not going to look very hard for better studies when it will cost them additional money to fund more people than before.

·     Get your doctor involved. It can only strengthen your appeal to have a doctor’s letter included in your packet. Also make sure that the doctor submitted the correct information. Maybe they accidentally coded that you/your child was "in control" when in fact, that may not be accurate (more likely with ICD-9 coding than the new ICD-10). Perhaps they accidentally stated that there is hypoglycemic awareness, or didn't document the fact there were multiple low blood sugars a month prior to the appointment and they only downloaded/reviewed the past week's worth of blood sugar logs. Any of these little items could lead to a denial by the insurance, who is relying on the doctor first and foremost to make a determination of medical necessity.

·     You might not have really been “denied”. Review your benefits and correspondence carefully. Sometimes you may have had benefits change from pharmacy to DME (Durable Medical Equipment) (or vice-versa). So you place your order on February 3^rd and they deny payment. What??? Well, your supplier most likely didn’t verify benefits after the first of the new year and catch that you no longer are to receive DME benefits for something they now consider a pharmacy product. It is SO important to verify with your suppliers every new year that an updated benefits determination has been made.

·     The top topic I hate is lack of prior authorization. Supplier told you that your system was approved, hurrah! Three months later you receive a bill from the supplier, saying that you have been denied the device that was already mailed to and used by you (or your child). It’s a medical device so you cannot return it which leaves only appealing the insurance denial as an option. It's stressful. I hate hate this because it is actually the supplier’s fault for issuing the CGM without WRITTEN confirmation of benefits. A lot of benefit determinations are made verbally over the phone with your insurance, where a representative is sitting there looking at a screen with your policy on it. They see that CGM is a covered benefit and relay that info to the supplier. However, they failed to note that deep within the medical guidelines are qualifications for receiving that CGM. Because they didn’t look at the qualifications, they didn’t see that the insurance company actually doesn’t approve CGM’s for kids who are under 8 or that the A1c has to be within a certain zone. So while it is a covered benefit for most, it wasn’t for your situation. However, if a proper benefit determination had been made, it would have been caught, the supplier would have told you that it isn’t covered due to XYZ, and a denial letter would have been sent. You could have appealed it and most likely gotten the device within 45 days.  The supplier will say that the insurance company didn’t tell them, and the insurance company will state that the written terms of the policy always prevail (over verbal or limited benefits checks). Meanwhile, you have used the system and the supplier expects to be paid. So please double check your medical policies when possible!! (Note: I see insurance companies retroactively cover, so always ask. It doesn't mean it is guaranteed, but if you don't ask, it is greater chance they will not retroactively cover/pay).

·     It isn’t a true denial when you have large co-pays/deductibles/co-insurance. You might actually be approved for a CGM/Pump but insurance negotiated rates might be $4,000 for a starter kit (example only, every insurance is different). Your deductible is $2,500 and you have 20% coinsurance. This means that you are responsible for $2,500 plus $300 (20% of the remaining $1,500) for a total of $2,800 to get started. Just because you might not be able to afford this does not mean that you are denied, only that you have a plan that makes your out of pocket expenses high. If you find yourself in this predicament, please see my post on choosing insurance that best fits your needs. 

·     If you want to tackle an appeal yourself, take out the personal. Eliminate any emotional pleas, frustrations, or how the device is more convenient. They will not approve devices simply because you might not have to wake up at 2am to do a night-check anymore (convenience). They don’t care if you had to downsize your house to pay for medical care or that you cannot afford to pay for the device on your own. The more you make it sound like a mom wrote it instead of your attorney/doctor, the worse off. Use words like “patient”; “post-prandial” (the after-meal blood glucose); “caregivers” instead of parents/mom/dad/school nurse. Hypoglycemia, Hyperglycemia, Diabetic Ketoacidosis, etc etc. Don't assume that the doctor (or judge) reviewing the appeal knows what a CGM is/does or why it is so vital to the patient's well-being, so a short paragraph explaining the system is also helpful. Add any particular stories of severe blood sugar or any additional factors that may cause unexpected or delayed hypoglycemia, such as sports, swimming, etc. My appeals tend to end up between 10-15 pages long due to the amount of research data I include to back up my claims. Insurance companies need to know fiscally how not having this device could mean increased out of pocket due to emergency medical situations, backed by actual data. CGM's aren't cheap, but neither is an ER visit.

o     Example 1: “As the below referenced study in this specific age group is reliable data and postdates any studies used by XYZ Insurance to influence the medical policy guidelines, it can only be surmised that XYZ Insurance is now utilizing outdated and therefore unreliable research in its medical policy when it….(denies due to abc).”

o     Example 2: “The caregivers are extremely willing, able and confident in their ability to correctly administer and interpret the CGM data results to manage the patient’s glucose levels within the preferred range (given the right tools).”

o     Example 3: “The patient’s age does not lend itself to understanding the scope of this disease or the risks of complications. The patient may be busy and not be in-tune with any symptoms that might arise indicating either high or low blood glucose. This can delay medical treatment and cause a crisis versus being caught early with audible alarms for the child and/or caregivers.”

o     Example 4: “Exercise is vital for diabetics but delayed hypoglycemia is a risk. The delay can stretch hours after exercise and cause hypoglycemia. It is impossible to monitor blood glucose values for the full 24 hours post-exercise using manual blood glucose checks. This would necessitate hourly checks to monitor the glucose trend to see when the delayed hypoglycemia might occur. Given that exercise is recommended on a frequent basis for all children, this is impractical.”

My husband is convinced that insurance ruffian’s will be banging on our door for helping overthrow their denials, but oh well!  I hope that this has helped you somewhat (or a lot!) in your fight. I encourage EVERYONE to appeal insurance denials. Remember, I am available for help! 

[Updated March 2016: I am currently testing an appeal letter in pediatric Medicaid/Private plans for those offering NO coverage (ie: not based on medical necessity but rather due to not being included within coverage at all). Given the results, I may make this letter available to the general public. If you would like a copy in the meantime and have received the denial letter already, please contact me for a copy]. 

Disclaimer: This is considered opinion only and any advice/help is not intended to be a guarantee of payment nor replace any legal or medical counsel. Follow your doctors recommendation regarding immediate use of medical devices vs. appealing delays when deciding medical treatment. Purchasing without insurance approval will result in out of pocket costs to the user and this will likely not be reimbursed by the insurance company. Outcomes for any appeal, whether written by blogger Samantha or yourself, are in no way guaranteed and/or promised. All appeal approval or denial decisions are based on your insurance companies policy guidelines and the coverage details from your written policy. There are situations where appealing will not be recommended or able to be completed by the blogger due to personal opinion/experience and/or lack of time. Ultimately it is your decision (along with your doctor) whether you proceed with any level of appeal and should not rest solely on a recommendation made off this site or in other communications. Timeliness of filing is solely the responsibility of the patient. Although I strive to provide appeal writing help in a timely manner, this is in no way a guarantee that an appeal will be written by any certain date, as this is a free service that is provided on a first-come, first-served basis in my free time. If you have emailed me and receive no response within 72 hours, please try again. There is no guarantee that every request will receive my help . At this time, I am currently only reviewing insurance denials from private insurance plans (individual or group) for a CGM or Insulin pump, for Type 1 patients under the age of 18. However, I can occasionally offer comments or limited help to pediatric patients with state insurance (Medicaid) or Type 1 diabetic adults with a private insurance plan. Any copays, deductibles, coinsurance, insurance premiums or other financial outcomes are solely the responsibility of the patient and/or guardian. The device companies and/or suppliers hold all warranties and customer service for the devices. I am not an attorney or doctor, nor an expert of any type; therefore it is the responsibility of the patient and/or guardian to thoroughly review any appeal for accuracy and/or errors before submitting to the insurance. I am not affiliated with any entity, whether for profit or non-profit. Any appeals I create are to be used only for the patient intended and are not to be made available through any other party or for sale. Permission is not granted for any duplication or online posting (Instagram, Reddit, Facebook, discussion forums, third party e-mail or any other online website, host, server, etc).

To the Parents of that Newly Diagnosed Kid

I see you there. You, the one who never imagined being in the hospital with your precious child. No matter how old they are, you still think of them as a small child while in your arms. You feel guilty that you might have missed the earliest signs and caused more harm. You are putting on the brave face in front of them and crying when you close the bathroom stall door. You're wondering how to pay for everything -  the hospital, the numerous new prescriptions, the time off from work, the various new foods that you're thinking will be needed. You are sitting in the hospital at your child's side, praying for both a miracle or someone to wake you up from this bad dream. You are also wishing for some sleep, because that's currently in short supply with all of the beeping monitors and nursing staff collecting blood every hour or two interrupting your REM. I see you trying to learn this new diabetic language while tossing all your preconceived notions about diabetes out of the window.  You are juggling your other kids/pets/job/family while being determined to spend as much time at the hospital as possible.  I see your stress as you learn this new lifestyle of carb counting, insulin formulas, emergency protocols, and all the while hoping that you aren't going to make a mistake and harm your child. I see you trying not to freak out the first time you have to stick your child with a needle. You are questioning every mouthful of food they consume, wondering both if it's enough or too much at the same time. You are worried about your child and their mental understanding of what this diagnosis means. You are also worried about how their teacher/sitter/friends are going to be able to take care of them if needed. And you are responding to well-wishers like a champ while swimming to your new island of loneliness where no one else understands. 

I see you. So on top of all the other information you are getting, listen to this. Soon, diabetes care will be the tiniest bit easier.  You will have nights where upon going to sleep, feel like you should get an award for best pseudo-pancreas. You will start talking the talk and understanding what the doctor's intent is when they make changes.  You will get diabetes "right" about 75% of the time, and curse it the other 25% for not making up its mind. You will know there was nothing you did or could've done differently to cause this diagnosis. You will find support where you least likely expect it. And I just want to let you know, I see you.  I've stood in your shoes. While every journey is different, we are all linked together because we get it. Like, "get it" get it. And it will get better for you. 

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.