10 Years of Diabetes

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V’s 10-year Lilly Medal

Ten years ago, on June 17th, I went to sleep on my last night of uninterrupted sleep. Ever. Ten years ago my 2-year-old daughter woke up lethargic and drowsy. Ten years ago I drove her to the pediatrician, who took one look at her finger stick and sent us straight to the ER.

Over the last ten years…

My 2 year old was diagnosed with Type 1 diabetes and DKA (diabetic ketoacidosis). While “only” 416, her blood glucose was four times the normal level. She spent 8 hours in the ER, receiving her first dose of insulin and getting stabilized, before CHOP’s transport team picked her up. She spent a total of five days (two in PICU, and 3 in endocrine) in the Children’s Hospital of Philadelphia.

She started with multiple-dose injections of fast-acting (Novolog or Humalog) and long-acting (basal – known by Lantus or Levemir) insulins for the first year. It’s not easy to give injections to a two-year-old.

At age 3, she got her first insulin pump from Animas. At the time we lived in PA, and our primary insurance paid only $1,000 of the nearly $6,000 pump. Medicaid paid for the rest. It’s not easy to insert infusion sets into a three-year-old.

She has endured over 50,000 finger sticks, roughly 2,190 insulin shots, approximately 1,700 site changes for her pump, and 10 complete metabolic panels. It’s not easy to get a small child to do all of these things.

We’ve been told a cure is only “five years away.” Several times.

We’ve walked in JDRF walks, attended one gala. My mom, her restaurant and her wonderfully generous guests have raised over $10,000 for the JDRF in the last 3 years.

I’ve “met” dozens of fellow moms and dads and other Type 1s. Whether face-to-face, a phone call, or just a click away – they are ALL valuable to me. I can’t imagine not having this support.

She was diagnosed with  hypothyroidism – diabetics are more prone to additional endocrine disorders – three years ago, and has added another medication to her arsenal. There are more blood tests to monitor this.

We moved out of state and into a new school system – nervewracking in itself but magnified by a child with a life-threatening disease who requires extreme vigilance away from home.

I wake two-three times a night to check her blood sugars, to make sure they don’t go too high or too low. Well, except for the nights she spends with her dad… though I still wake up spontaneously around 3 a.m.

I participated in the development of my state’s newest Guidelines for Diabetes Management in Schools, which was recently released. This was huge. I’m grateful for the opportunity to contribute to something so important.

I have fought countless battles with her over shots, pump set changes, and food.

I’ve let her go. This is the biggest development in our ten years on this unthinkable journey. I’ve let her go to do things and go places where I’m not constantly “helicoptering” and trusted that she’ll do okay on her own. This is a process that will probably never end. The worry will never go away.

Ten years later…

Children and adults continue to be diagnosed with type 1 diabetes with no definitive answer as to why. Several children have died due to undiagnosed diabetes, mistaken for the flu or other illness, and discovered in DKA (extremely high, life-threatening blood sugars) and too late. Also, people with diagnosed diabetes can and have died from both extremely high and extremely low blood sugars.

We in the diabetes community continue to struggle with the stigmas and misconceptions surrounding the disease, which is often confused with Type 2 diabetes and the subject of many a misplaced joke.

CGMs are widely used today, which allow a virtual window into the minute-by-minute changes in blood sugars. And – they can be connected through the cloud to parents’ cell phones, so those numbers can be seen in real time whether they are away from you or just down the hall. V refuses to use this because it requires another “site” for a needle.

The Artificial Pancreas and Bionic Pancreas are systems under development and currently being tested that will ultimately manage blood glucose levels without constant intervention and monitoring by the patient.

At least two organizations are working on cell-pouch technology which would introduce a semi-permeable “pouch” containing insulin-producing cells (beta cells) which would  effectively respond to the individual’s blood glucose levels, and ultimately eliminate the need for insulin. This, too, is in clinical trials.

Veruca, at age 12, has no memory of life before diabetes. But 10 years later, she “hates diabetes.” She just wishes she was “normal.” “Why doesn’t O have diabetes?”

Ten years later, she counts carbs and boluses for them. She knows how to change her sites, even though she still prefers I do them. She is more independent than ever with handling her diabetes, and giving me some confidence that she’s “got this.” At least right now.

She still sneaks food or eats without bolusing (giving herself insulin to cover it). This will be an ongoing battle with her. She is easily annoyed with my constant nagging about testing and bolusing, and eating things without doing those things first. This will be an ongoing battle for us.

Ten years later…

We’re still waiting for The Cure.

**For more information, the Diabetes tab above contains previous posts and background.

 

 

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T1 D: We’re the Parents

Composed on my cell phone at 3:26 a.m. Today is the last day of National Diabetes Awareness Month.

We’re the parents. We’re tired.

Tired of chasing toddlers around the house with insulin shots in hand.

Tired of pleading with, worrying over, and screaming at our irresponsible teenagers who just want to be “normal” kids.

Tired of our child’s anguish over it – why did this happen to me? It’s not fair. I just want to eat when I want. I don’t want to test. I hate diabetes. I hate my life.

We’re tired of not sleeping. Tired of the constant worry that the outside world seldom sees.

Many of us are on medication. Some of us self-medicate with alcohol, a little too much.

We’re tired. Tired of having outsiders question us when we’re pushing our kid to finish all their food, because they don’t know or understand that she’s just bolused six units of insulin and will have a serious low if she doesn’t.

Tired of explaining Type 1 diabetes to the uninitiated. Tired of sharing information, and trying to make the world see – at least one month out of every year – how serious this disease is, how deadly, and how it is NOT Type 2 diabetes like your grandma has.

Tired of insensitive people sharing how little they understand by comparing our child’s diabetes to that of a cat they once had, or worse – telling us about a friend’s husband who died when his blood sugar dropped to 17 and there was no one to save him. In front of our child.

We’re tired. Tired of explaining that a blood sugar under 60 is a serious medical emergency that cannot be ignored, postponed, or treated lightly.

Tired of lying awake in the middle of the night, our child’s blood sugars well over 300, worried about ketones and not being able to forget the image we saw earlier of a beautiful young girl who died because of a kink in her insulin pump line.

Tired of watching the cost of life support rise to ridiculous prices, and scared to death that one day our child might not be able to afford their insulin. Tired of wondering why there’s a copay for this life-sustaining medicine, but not for the test strips to monitor blood sugars. Tired of fighting with insurance companies, who don’t work for us, over all the supplies we need to keep our child alive.

Tired of worrying about every birthday party, every field trip, every excursion our child takes, away from our ever-watchful eyes.  Worried that they’re remembering to check their blood sugars before turning the key in the ignition.

Tired of worrying over the quarterly finger-stick report card we call an A1c, that tells us how well we’re managing the rollercoaster. Worrying over annual blood tests – which remind us of other worries like high cholesterol and heart disease, kidney disease, and the higher risk of secondary disease that walk hand-in-hand with diabetes, like Celiac’s and thyroid disease. Worrying over every annual eye exam, and praying there are no changes.

We’re tired of worrying and thinking about how our child is going to do this on their own someday. How we’re going to sleep at night when they’re no longer living with us.

We’re tired of hearing of new diagnoses. We’re tired of hearing of one more child who died from undiagnosed Type 1 diabetes, because their parents didn’t know the signs.

We’re tired of all the fundraising, and the promises of the ever-elusive Cure. Sometimes, we’re tired of hoping. Sometimes, we’re tired of praying.

We’re the parents, and we’re tired.

 

 

 

 

 

Diabetes, and Emails, and Mice

I’m working though my emails this morning and there was one from Kohl’s. It’s their “best Black Friday deals early” email. Um, WHAT? We barely have one foot in the door of November. My God, I haven’t even begun to think about Thanksgiving.

There were also several “store” emails taunting with coupons to save money by spending money, daily recipes I will never cook, endless Pinterest pins I have to see, and a new bill from waste industries. Which I find ironic seeing as this week they didn’t even have to leave the comfort of their truck because Opac forgot to take the trash cans out. Oh, and another email with 5 Trending Ideas for the Living Room and Where to Hide the Litter Box in the subject line. This sounds like one I can’t afford to miss. Hopefully the trend in Living Rooms is not where we hide the litter box.

Speaking of litter boxes, I was watching American Horror Story last night, alone, when I suddenly became aware of some shuffling noises coming from my kitchen. Both kids were already in bed. Then the dog stood up and stared into the kitchen. A moment later, Oliver came barreling into the living room chasing a small gray thing that appeared to be fast-limping in circles until it found the entertainment center and scuttled under it.

Long story short, we live in the country and the nights are growing colder. This is the second night this week that Oliver has had a live toy to play with. The first night, he and his furry buddy woke Veruca – and then me – at 4 o’clock in the morning. She and I followed them in horrified amusement until the mouse disappeared into one of our guest rooms in the rec room. I figured it’d take a miracle for them to end up back in Veruca’s room, so we went back to bed. By morning, Oliver was playing with the body just inside the front door.

Last night Todd came home from working late and found me sitting on top of the back of the couch, simultaneously watching AHS and the cat, and said – what are you doing? I stood up and walked across the couch to greet him, and pointed at the cat. Fifteen minutes later Oliver chased this thing down the stairs, I opened the front door, and Todd swooshed it outside with a dustpan. It is an unnerving and slightly hilarious thing to watch your cat capture a mouse in his mouth and then let it go several times, and not know which way the mouse is going to run or if it’s going to end up in your bed before morning.

So, back to that first night… where I was up at midnight and 3 a.m. for blood sugar checks. Veruca went to bed high (high blood sugar, not drug-induced high) and after an insulin pump site change, at 9:30. She continued to run high all night – 452 and 343 respectively – probably due to the pizza and birthday cake we’d had earlier for Opac’s birthday celebration.

My alarm was set for 3 and I got up to find her stable again at 162. Less than an hour later I was awakened to shuffling noises and then a soft knocking at my door – Veruca standing wide-eyed in the hallway – and for a brief moment I panicked, thinking she might’ve gone very low after correcting those high numbers.

November is Diabetes Awareness Month, and I commit myself every year to advocacy and awareness for Type 1 diabetes – the chronic illness my daughter has lived with for 9 and half years.

The JDRF has a new “thing” on their site where one can calculate their diabetes footprint. My daughter was diagnosed in June of 2007 at the age of 2. She began with a terrible, old-school regimen of insulin shots that turned her blood sugars into a ride so wild they made the Kingda Ka look like It’s A Small World.

Her calculated diabetes footprint looks like this:

3,425 Days living with T1 Diabetes

1,952 Hours of sleep lost (this is waaaaay off base)

20,550 Finger Pricks (also way off base)

964 Insulin Pump site changes (off base)

There were far too many nights I had maybe 3 hours of sleep total, after constant monitoring and vigilance. Night time is the scariest time for T1s – when many can suffer low blood sugars that can go unchecked if they don’t wake up to test. Low blood sugars, if left untreated, can lead to unconsciousness, and even death.

We used to test her every two hours. Every. Two. Hours. Every day. That’s a minimum of 12 finger sticks per day. Based on that, and given that we’ve backed off of so frequent checking – her total number of finger pricks to date is more like 30,000.

She’s had T1 for 9 years and 5 months. She’s worn an insulin pump for just over 8 years. The site gets changed every two days. Except when there’s a “bad” site, or we have two consecutive blood sugars over 240. Then it gets changed again. There were many, many times it was changed nearly every day, and on a rare occasion, more than once in a day. Therefore, I’d recalculate the above number to more like 1500.

Nine years in, and we know when it’s a site issue, or just some other anomaly. We know that highs happen, and that lows happen, and that that’s just how diabetes rolls.

I know that to outsiders we make it look easy. We don’t piss and whine about how horrible Type 1 diabetes is. After 9 years, it is our way of life… and it is all my daughter knows. But there is so much more to this disease. So much more, and it’s scary and unfair and there are children dying from it. Just one child dying from undiagnosed diabetes should be too many, and last year there were at least 5 that I can count.

 **Disclaimer: I don’t use the upgraded service; therefore, you will see ads at the bottom of my posts (ads I don’t see because I’m not you). As it has come to my attention that certain ads may not align with my world views – I am compelled to add the following statement until further notice.

I ABSOLUTELY DO NOT SUPPORT DONALD TRUMP. NOT YESTERDAY, NOT TODAY, NOT – EVER.

9 Years

9 years today. Nine years ago last night, I went to sleep on my last night of uninterrupted sleep. Ever. It’s been 9 years since that fateful day in 2007, the day after Father’s Day, the day my 2-year-old daughter woke up lethargic and drowsy. Nine years ago I drove her to the pediatrician, who took one look at her finger stick and sent us straight to the ER.

Over the last nine years…

My daughter was diagnosed with Type 1 diabetes and DKA (diabetic ketoacidosis). While “only” 416, her blood glucose was four times the normal level. She spent a total of five days (two in NICU, and 3 in endocrine) in the Children’s Hospital of Philadelphia.

She started with a Nazi regimen of NPH insulin and Novolog, and eventually switched to Lantus and Humalog. (The two “logs” are fast-acting insulins; the other two were for managing basal glucose levels.)

At age 3, she got her first insulin pump from Animas. At the time we lived in PA, and were blessed to have Medicaid pay for all but $1000 (what our primary insurance only paid for!) of the nearly $6000 pump.

I have fought countless battles with her over shots, pump set changes, and food.

I’ve watched her sleep many nights, and I’ve awakened her hundreds of times when she falls asleep in the car.

She has endured over 49,275 finger sticks, roughly 2,190 insulin shots, approximately 1,664 site changes for her pump, and 9 complete metabolic panels. How many 11-year-olds have CMPs every year?

We’ve been told a cure is only “five years away.” Several times.

We’ve walked in two JDRF walks. My mom, and her restaurant and her wonderful customers have raised over $10,000 for the JDRF in the last 2 years.

I joined Facebook and found a handful of moms like me who understood the daily battle.  And, a few years later, I met a handful-more fellow warriors I am grateful to count as friends. Whether face-to-face, a phone call, or just a click away – they are ALL valuable to me. I can’t imagine not having this support.

She was diagnosed with yet another endocrine disease – hypothyroidism – two years ago, and has added another medication to her arsenal. She endures biannual blood tests to monitor this condition, not always coinciding with the CMP.

We moved out of state and into a new school system – nervewracking in itself but magnified by a child who requires extreme vigilance away from home. I cannot say enough how instrumental our school nurse was in smoothing the transition for Veruca and relieving my anxiety over her safety. I trusted Jane with my daughter’s life, and I’d do it all over again.

I woke up every two hours during the first four years, and after my divorce found that I only needed to wake up twice per night to check on her. So, that’s twice per night for the last 5 years. Well, except for the nights she spends with her dad… though I wake up spontaneously around 3 a.m. even on those nights.

I participated in the development of a new Maryland State Guidelines for Diabetes Management in Schools, due out July 1st. This was huge. I’m grateful for the opportunity to contribute to something so important.

 

Nine years later…

CGMs are the norm with many of the children I’ve encountered, which allow a virtual window into the minute-by-minute changes in blood sugars.

The Artificial Pancreas and the Bionic Pancreas are systems currently being tested that will ultimately manage blood glucose levels without the constant intervention and monitoring by the patient.

At least two organizations are working on cell-pouch technology which would introduce a semi-permeable “pouch” containing beta cells (insulin-producing cells) which would [hopefully] effectively respond to the individual’s blood glucose levels, and ultimately eliminate the need for insulin. Via-Cyte, in partnership with JDRF, is currently running clinical trials in San Diego.

We seem to be closer than ever to a “cure,” and yet still so far away.

Veruca, at age 11, has no memory of a life before diabetes. But nine years later, she’s begun to say the words I knew I’d hear someday. She “hates diabetes.” She just wishes she was “normal.” “Why doesn’t Opac have diabetes?”

She still sneaks food or eats without bolusing (giving herself insulin to cover it). This will be an ongoing battle with her.

She attended her first birthday party without me last fall. This precipitated her first cell phone, and she used it to keep me updated.

She finished her elementary career this month, and we are looking ahead to middle school and the independence it requires.

She counts carbs and boluses for them. She knows how to change her sites, even though she still prefers I do them. She is more independent than ever with handling her diabetes, and giving me some confidence that she’s “got this.” At least right now.

 

 

The Stakeholders Meeting – Management of Diabetes in Schools

I was invited, as a parent of a T1 child in Maryland public schools, to attend a Stakeholder’s meeting to discuss school management of diabetes. I was really excited to go, anxious to hear what issues they were tackling, and eager to share my thoughts and concerns as I had heard them through the DOC (Diabetes Online Community). The meeting was jointly convened by the Maryland Department of Health and Mental Hygiene (DHMH), the Maryland State Department of Education (MSDE), and the Children’s National Health System.
 **Let me clarify that I do not represent these organizations, I am not speaking on their behalf, and I did obtain permission to write this post from the officials spearheading this initiative. I am simply a T1 parent volunteer with a stake in the goals set forth by the meeting, and my goal in sharing this is to reach parents in other states who are struggling with diabetes management in school. As I mentioned in a previous post, there is a breathtaking gap in Type 1 management in schools across the US. The information contained here I hope will serve as inspiration for parents in asking their own schools and states to step up to provide the best possible care and safety for Type 1 students – parents can and should demand legislation and more state involvement where it is lacking. **
The agenda was comprised of perspectives from the diabetes care provider, the State Board of Nursing, School Health Services, and the Parent/Family, to include management challenges, needs, and opportunities in the school setting. After introductions, we broke out into workgroups made up of members from the various stakeholder groups represented that day, each to discuss a different focus area. Obviously I don’t need to tell you that there were a number of Very Important People in attendance that day.
The topics on task for the day included communications between Providers, Schools, and Parents regarding medication orders, the School Health Services Form for Diabetes Management, the implementation of 504 plans and IHPs, issues related to the training of school nurses and other staff, the training and oversight of unlicensed persons, challenges regarding care on field trips and other school-sponsored activities, promotion and support for self-management and essentially what that looks like at each school level. Each workgroup was given a specific focus area to discuss, with very focus-specific questions. The workgroups – again, each comprised of diabetes care providers, school nurses, representatives from the State Board of Nursing, Parents/Caregivers, and government representatives – were tasked to come up with recommendations for these issues.
These focus areas can serve as a foundation for parents nationwide to open dialogue if and where it is needed:
The School Health Services Form for Diabetes Management – how orders are written and transmitted, whether it is standard or individualized, best ways to transmit orders, whether a new order is necessary for every change in insulin dose, and ways to improve the form.
Communicationsbetween providers and schools – including provider accessibility to schools, the parents’ role regarding medication orders, and strategies to improve communication between all parties.
Training of school nurses and other school staff – including unlicensed persons who may be needed to fulfill diabetes needs of students (carb counting, calculating boluses, managing care on field trips, and strengthening policies for self-management), with recommendations on how state and local programs can enhance this training to unlicensed persons. Here too, the focus is on the child’s safety in the school setting, and what happens when a school nurse is unavailable.
Communication with and oversight of unlicensed persons providing diabetes care, strategies to address barriers for how and what school nurses delegate, and how communication is achieved when nurses aren’t on location. In addition, how schools promote self-care at the age-appropriate level, what care and management looks like in elementary, middle, and high school settings, how this determines the location of diabetic supplies, and effective collaboration with parents and providers on these issues.
Educational supports regarding 504 plans, Individualized Health Plans (IHP), how much and what type of information is needed on those forms, accommodations regarding standardized tests, challenges with regard to implementation that students and parents encounter, how these challenges were addressed, and what communication regarding education supports has been effective between the school nurse and other personnel.
Diabetes Management Challenges as relates to diabetes care on field trips and school-sponsored activities, what parents’ concerns are regarding safety in the school setting, how these concerns were addressed, what expectations parents have of school personnel, as well as what additional training/education might be needed to support students and parents.
The end result of this Stakeholder’s Meeting, as well as ongoing committee meetings (on which I continue to participate) is to have a new and updated Management of Students with Diabetes Mellitus in Schools, a Maryland State School Health Services Guideline to be completed and in effect for the 2016-2017 school year. I am not at liberty to discuss the specific outcomes and recommendations stemming from these meetings at this time, though I hope to share the final product once it is officially implemented.  But I have learned so much.
Being the “parent” often means feeling like we’re being judged on everything from helicoptering to being the demanding or hysterical parent to being judged on our child’s management. That’s not to say that schools make us feel that way, though I’ve heard many a parent tell some tales that would curl your hair… I have been gloriously blessed with a fantastic school nurse who needs absolutely no supervision from me. Type 1 parents don’t sleep very much. We are frustrated and angered by the blurred distinction between Type 1 and Type 2, the lack of understanding from our friends and even from family of how scary this disease is, and how it is life-threatening on a daily basis. That may sound overdramatic, but the fact is, and remains, that our children are alive only through our tireless diligence and a drug that can also kill them. It’s no small wonder that any of us can function while our children are away from our care.
That being said, I have also now heard perspectives from schools and providers. I met people that genuinely care about the safety, well-being, and education of students with diabetes. Someone said she had actively pursued a pharmaceutical company to market a half-dose of glucagon for children under 6 years of age to make it easier for licensed personnel to administer the correct dose if necessary. Someone commented that in an emergency situation where glucagon is warranted, there is no such thing as overdosing. I’m not the only parent who would agree that it’s not worth arguing details when it comes to glucagon, because notgiving it is not an option. I have heard that some parents haven’t even provided glucagon to the school, and the reason is affordability – because some insurance companies are not covering it. The cost of glucagon out of pocket is over $100 per kit, and I know we have at least 4 – one at school, one in my purse, and at least one each at my house and her dad’s.
There was mention of having education and training for all school personnel with regard to glucagon – that in many schools they are already trained in the use of EpiPens, so why not glucagon as well? Shouldn’t everyone know how and when to use it, just like the EpiPen? Should schools require it, or request volunteers to learn how to administer it? When we were still in Pennsylvania, our school nurse had a fit over anyone but her using the glucagon kit. Her concern was liability, and she may have been right, but it was always my feeling that I don’t give a rat’s ass WHO gives my kid glucagon, so long as somebody DOES. I would never sue somebody for attempting to save my child’s life. Alas, there probably is someone who would and therein lies the problem the “officials” face.
Also among the conversations I heard was of one kid whose parents didn’t want to manage his diabetes at all, and his A1c was 17. Imagine that the person who knew this information had to decide what to do with it. It’s certainly a different perspective, something I urge all parents to consider when they’re feeling sensitive about how they’re treated by school personnel. Unfortunately there are children out there with diabetes who do not get proper care, either due to lack of parent education about Type 1 diabetes or accessibility to health care, or both. Consider how school nurses and other personnel who DO understand diabetes handle situations like these. What is their responsibility to this?
What’s really exciting and coinciding with the Stakeholder’s initiative is Maryland Senator Ronald Young’s Senate Bill 71, Public and Nonpublic Schools – Student Diabetes Management Program, which will require “the State Department of Education and the Department of Health and Mental Hygiene, in consultation with certain other organizations” to provide for all of the aforementioned focus areas (I’m really overgeneralizing here). Senator Young is very passionate about diabetes management and safety in schools. He expressed his concerns over the gaps in diabetes care in some counties (sidebar: Maryland public schools are organized by county, ie: Cecil County Public Schools, Baltimore County Public Schools, etc.) with regard to safety both in the school setting and on school buses, as well as field trips, after-school care such as extracurricular activities, and the absence of diabetes care providers in some schools.
There are far too many points to mention for the purpose of this post; however, it will provide for training guidelines for staff and employee volunteers to become trained diabetes care providers, although not to be “construed as… practical nursing or registered nursing” (the liability side of training diabetes care providers). The bill will provide for a Diabetes Medical Management Plan (DMMP) meeting for the student and all individuals charged with care.  It will establish, among other points, where and how the student will manage diabetes tasks, as well as allowing the student to carry supplies and “possess a cellular phone to ask for assistance when necessary.”
While my workgroup focused on policy related to unlicensed personnel providing diabetes care to students, one nurse asked me my feelings on my child’s safety on field trips, either in a self-care situation or with an unlicensed person managing her diabetes. I expressed serious reservations about someone making decisions about her care without communication with me, and especially because in some locations cell phone service is compromised. Senator Young was in my workgroup, so he heard my concerns. Still, his efforts with the above bill have merit in the general sense, where some parents have few options due to work constraints.
There is so much more and in the interest of time and space, I will wrap this up. I don’t pretend to know what kinds of legislation have been enacted in any other states, but I strongly urge you to have a look at this bill. Senator Young expects to have it enacted by July 1, 2016, and I hope by that date to have more to share.

 

Type 1: Know the Signs!!

Lately it seems Type 1 diabetes has been in the news, the worst kind of news:  the reports are of new cases only diagnosed after a child has died.  It seems implausible to me that this could happen, and I really don’t like to focus on the negative of anything, but the fact is… it has happened.  How could it get that far?  And more frightening of all… how could a physician, any physician, miss the signs?  Or, at the very least, consider all of the possibilities?  That just one finger stick and a tiny spot of blood could rule out this chronic and debilitating disease?

And this is why we “D-parents,” as we often call ourselves, are so eager to educate and get the word out.  We don’t want to hear any more tragic stories of diagnoses that, had they come soon enough, would not have ended this way.  So it is with this heavy heart and good intention that I share this very simple information with you… and implore you to share it with everyone you know, too.  Most people may never have to use it, but – as more and more new cases of Type 1 diabetes are diagnosed in children today – more than 15,000 every year *– someone, somewhere, can benefit from a little bit of knowledge.  That someone may very well be someone you know.
FACT:  Type 1 diabetes, also known as Juvenile Diabetes, is an autoimmune disorder that comes on suddenly.  It cannot be ignored, there is currently no cure, and the individual who develops Type 1 WILL need insulin to survive.
FACT:  Many cases of Type 1 in children come as “surprise” – there can be a genetic factor, yet researchers also cite environmental factors, as well as viruses, as triggers.  In many cases, there is no other traceable family history of the disease (unlike Type 2 diabetes).
FACT:  Type 1  diabetes, also known as insulin-dependent diabetes mellitus, is often misunderstood by the general population, and is frequently confused with Type 2 diabetes.  They are NOT the same.
FACT:  Diabetic ketoacidosis, also known as DKA, is a serious but often preventable emergency that can arise from high blood glucose levels in the body.  Undetected high glucose levels can quickly progress to difficulty breathing, shock, coma, and even death.*
FACT:  People don’t die from Type 1 diabetes; they can die from complications of Type 1 diabetes including, but not limited to, hypoglycemia (extremely low blood sugar that went untreated), and DKA.  These are the two most serious issues Type 1s face.
            The children I read about in the news recently died from diabetic ketoacidosis.  Their parents did take them to a doctor for symptoms they were having, but those physicians either missed the signs, or didn’t consider Type 1 diabetes in their assessment.   The tragedy in all of these cases is that a simple finger stick test would have confirmed or ruled out Type 1 diabetes.  One finger stick, to test blood glucose levels.  Or, a urine test, which would have measured ketones (acids found in urine, related to high blood glucose levels) and thus, diagnosed diabetes.
My daughter had DKA at diagnosis.  Her blood sugar in the pediatrician’s office the day I carried her limp, vomiting and rapidly-breathing 2-year-old body in after a week of marathon drinking and urinating:  416.   She had large ketones.  She spent 36 hours in CHOP’s PICU, the first 8 being monitored for signs of coma.  Your, or your child’s, blood glucose reading, if you took it right now: mostly likely, 70-80.
Please, please, please share these symptoms with everyone you know.
SYMPTOMS of TYPE 1 DIABETES:
  • Extreme thirst (as in, your child cannot get enough to drink)
  • Frequent urination (as in, your child is constantly in the bathroom, or saturating diapers more than several times a day)
  • Drowsiness, lethargy (as in, your child doesn’t want to get up, and is very very tired, or sleeping a lot)
  • Sudden, unexplained weight loss (as in, your child looks thinner than usual)
  • Increased appetite (as always hungry/eating, but still losing/not gaining weight)
  • Fruity, or sweet-smelling, breath
  • General feeling of unwell, or, in some cases, obviously ill in combination with any of the above mentioned symptoms
I want to point out that my daughter had all of these symptoms (the first 2 for a week before the others occurred) except that she was NOT ill before the symptoms began (the son of a friend of mine WAS sick with an unrelated illness prior to developing symptoms) and she actually exhibited a decrease in appetite. By week’s end, she was very ill and had developed the more serious signs that brought us to the doctor.
SYMPTOMS of DKA:
 
Symptoms as listed above but progressing to:
  • Lack of appetite
  • Pains in the stomach
  • Vomiting or feeling nauseous
  • Blurry vision
  • Difficulty breathing
  • Feelings of weakness
  • Sleepiness
  • Fever, warm, dry, or flushed skin
  • Stupor, unconsciousness

 

Many of the above symptoms mimic symptoms of other illnesses, like the flu.  This is why it is important to know the signs and symptoms of Type 1 diabetes, and pay attention to your child especially if he/she does not appear to be “getting better.”
Which brings me to one more symptom the resources don’t mention that I want to add to the list:
YOUR gut feeling that something just isn’t right There’s no wrong in overreacting where your child’s illness is concerned.  The old adage, “better to be safe than sorry,” could not be more important.
Know the symptoms.  Share the symptoms.  You could just save a life.
Thank you.
**This post was written 4 years ago, and I wanted to add that the above symptoms can happen to ANYONE. NOT just children. A friend of mine was misdiagnosed a couple of years ago with type 2 diabetes, and the medical care she was receiving wasn’t improving her health. She lost almost 40 pounds. Today, she lives with Type ONE diabetes, AND wears an insulin pump. **
*Sources:  JDRF, and the ADA’s Complete Guide to Diabetes.
More information can be found at www.jdrf.org
*** This post is no way intended to be medical advice. Please consult your physician.

How We Got Here – Part 1

On Monday, June 18, 2007 – the day after Father’s Day – our lives changed forever. (The week before, my two-year-old daughter had been guzzling water and saturating diapers at night, waking up during the night for water and falling back to sleep clutching her sippy cup.)  She slept til 10 and refused breakfast, settling into my lap only to fall asleep again until about noon.  When she woke again she was drowsy and limp, her breathing quick and  shallow.

An hour, a short exam and finger stick later – the pediatrician dropped the bomb on me.   My sweet, beautiful little girl had Type 1 (or Juvenile) diabetes and would need to go to a hospital immediately.  I felt all the color drain out of me and my knees went weak, right before she vomited all over me.

Over the next several hours spent in the emergency department at Reading Hospital, I cried intermittently, trying to be strong and not scare the hell out of Owen – who once again had a front row seat to another family drama.  Thank God my mom was there; I had a premonition that this could take a while (little did I know).  She kept Owen occupied and fed until she finally took him home around 7.  He hugged me goodbye as my eyes filled with fresh tears, and asked me if his sister was going to die.

Ava was hooked up to every imaginable machine, a vision of a parent’s worst nightmare, with various IVs attached to her arms – she clung to me, my tiny daughter, sweaty and limp and crying.   Nurses were coming and going, checking her vitals and drawing blood and putting up more bags of IV fluids to hydrate her.  At some point they told me they were starting an insulin infusion and I wanted to scream “no!” – “no! no! no!”  For I knew this meant there was no turning back, and I just couldn’t wrap my brain around it.  And I had the enormous responsibility of calling my husband on his long way home from work – the only time I could reach him – to tell him where we were.

The Children’s Hospital of Philadelphia has their own transport team, who were amazing, who swept in there and took immediate control – I felt a profound relief wash over me as they wheeled her  into their waiting ambulance.  And, nine hours after our ordeal had begun, we arrived at the Pediatric ICU to a room oddly bustling with people and activity at 11:30pm: paperwork, hooking Ava up to the machines next the bed where I would lie with her for the next 36 hours, settling her dad into the parents’ couch/bed.  With a mascara-smeared face and empty stomach, I was in for my first sleepless night in our diabetes journey. 

There were hourly nurse visits – checking blood sugar, running blood tests, taking away saturated diapers and, my personal favorite, rousing her and checking her pupils for signs of unconsciousness or coma.  It seems brain swelling is a very real complication of diabetic ketoacidosis (DKA) which can lead to coma or worse; my daughter, whose first blood sugar reading was over 400 (normal is around 80), had DKA (a condition caused by continuously high blood sugars and the resulting acid buildup in the body- ketones) and was a very sick little girl.

She improved remarkably fast over the next twelve hours and was soon awake and smiling, talking to us and loudly protesting the poking and prodding of strangers, then slipping into that mind-numbing screaming hysteria that made her hoarse.  It was amazing, though, how that insulin transformed her.  I’ve heard this from many other parents too, “it’s like, I’ve got my child back.”

We were soon moved out of the PICU and onto the Endocrine floor where we spent the next three days in a diabetes crash course, learning how to test her blood sugar, how to count carbs, how to draw up insulin into a syringe and give her a shot.   And not just one shot – she would have to have between 3 and 5 shots every day.  I felt faint as I held the first shot I ever gave her – my hands trembling – and she, defeated as she was, didn’t fight it.  But that was to change after we got home, where every day three times a day I’d have to chase her around the house and hold her down (kicking and screaming) to give her insulin shots.  

My journal entry just four weeks later:  We live in our own private hell.  And I’m so angry – resentful of all the parents who take their easy lives for granted.  Like we used to.  We can’t go anywhere without planning ahead: pack the glucometer, test strips, lancets, juice boxes and snacks, CakeMate and Gluco-Gel, and Glucagon for the worst case scenario.   I feel so isolated – while people ask how we’re doing I feel like they have no idea how serious this  all is, or how devastated we are – what kind of unique hell it is to have a 2-year-old insulin dependent AND stubborn child who fights every injection that she needs to preserve her life.  How many can understand one of the hardest things any parent will ever have to do – to literally be responsible for keeping your child alive every day?  Forever.  Never again will I have the freedom from worry over my daughter’s health and safety.



 

Priorities and Doubts

Ava wants to make sure I put everything on the list – “if I don’t make a list, Santa won’t know what to get me.”  “Will you give it to him?  I don’t want to see him because I don’t want him to hug me…. so I’ll just wait in the car.”

And, while we’re at it, Ava would really like a baby sister.  (She’s asking us, not Santa, btw.)
“And she can sleep with me so she won’t be scared.”  I tried to explain to her that I really don’t think there will be any more babies in this house, but she asks “why?”  She asks because she hears the hesistation in my voice – she hears what I never say out loud, that I really did want another child, what feels like the missing piece of a puzzle I’d made up in my mind 25 years ago.

As I sorted out all the baby clothes two years ago from a collection of seven Rubbermaid totes in the attic, deciding it was high time I drove it over to the consignment shop, I felt nauseous and slightly dizzy.  How could I part with my first born’s newborn sleepers?  The outfit he wore in his first Sears portrait?  Everything in those boxes contained a physical memory of the baby he was:  the early, before-sunrise feedings by the Christmas tree, the lazy days spent on the couch cradling him in my arms, his first real foray in the snow outside our apartment in his $80 Gap snowsuit, the swimming trunks he wore while he clung to me in my dad’s pool, the clothes he wore at a Christmas Eve dinner where he charmed everyone around us and me – the joyful recipient of his newest skill – kissing.

The clothes had not only the sentimental value, I argued with myself, but economical as well – what IF we had another child?  And we also had tons of girl clothes too – as my mother-in-law, the mother of only two boys, thought she’d died and gone to heaven and rushed right out to the Bon Ton.  In the beginning of my purging exercise, though, it seemed easier to part with Ava’s clothes, so sure was I that if there was a baby #3, it would be a boy.

The eeriest part of all this came when I was sorting a box of Owen’s baby clothes with Ava – she was pulling out things and announced that “this is Mason’s.”  I felt the hair stand up on the back of my neck.  For those who don’t know, Mason was the first name we had picked for Owen, before we decided on the name he was given.  We had figured then that “Mason” would come later.  Ava never knew this.

Today, though, Ava is convinced that she will be getting a baby sister.  The first time she brought it up, I just listened to her rattle on about how she would hold her and feed her, but not change her diaper because “I don’t really know how to clean up poop.”  After two days I felt it was important to explain that while it would be nice, it is not likely.  My cling-on daughter seemed undaunted by the idea of being separated from me for a few days, that “daddy can take care of me, ” if it meant she’d get me back with a bonus.  I felt compelled to explain all the “cons” of a new baby in the house – including the incessant demands of a newborn (but hey, I’m already up all night, right?)  a rather large and inquisitive dog who hasn’t yet mastered  “down” (who, by the way, was insanely jealous of the baby kitten I once held), not to mention the very real possibility that she could end up a he. 

What I do not say is what she cannot yet understand.  That I worry about my “advanced maternal age.”  I was 35 when I was pregnant with her and that seemed to be a big deal in the medical community.  That the joy of discovering she was a girl was overshadowed with worry over the choroid plexis cysts she had on her brain (apparently not uncommon and resolve themselves) and her right renal dilated ureter (more worrisome) – all markers for outcomes we never hoped to ever think about.  That I was knocked out by round-the-clock morning sickness for 16 weeks, seven longer than with my first child.  That while I enjoyed the overall pregnancy experience, I still cringe with memories of her lightning-fast delivery.  That I can never forget us standing over her bassinet just two hours after her birth, anxiously searching her face for reassurance that she was normal.  That I can’t forget the 45 minute car ride home, the worry and the tears we shed over the news we’d need to see a CHOP specialist for her dilated ureter, now named hydronephrosis.

More than that, more than losing my body again or squeezing a third child into our loud and chaotic little family, is the fear of having another child with diabetes.  Owen has a 5% chance of developing Type 1 himself and, while that percentage seems small, I’ve seen and met too many families online with multiple diabetic children.  It took me way too long to let go of the fear of whether he too would get it.  And, the risk remains, for life.

Time has a way of healing wounds, they say, like the loss of a loved one (jury’s still out on this one for me), the memory of childbirth or even a week of watching your 2 year-old scream her lungs out at Children’s Hospital.  Life goes on.  They may not be gaping wounds anymore, but they do linger.

Worry never robs tomorrow of its sorrow, it only saps today of its joy. ~ Leo Buscaglia

Salt for the Wound

This was intended to be published Sunday, September 19th, 2010.
I was all prepared to expound on my woes in home schooling – as I am still adrift in the cyber ocean without the proverbial oar… last week a typical “Monday:” my daughter’s annual fasting blood tests in the morning, followed by McDonald’s smoothies for breakfast and an extra late start to lessons.  Ava was the easy part of the day; it was the “invalid username” I kept getting while attempting to log her in to mandatory assessments, the unavailable I/S (instructional support person) and the still uncooperative scanner I needed to use YESTERDAY.

I was going to mention how urgent I am to get started in the morning, as lessons are still running into the late afternoon.  How she bottoms out after lunch.  After 3:30 the house’s energy shifts dramatically; my friend Joyce likens it to floating along a lazy river and then all of a sudden you hit “the rapids.”  That’s my house after the big yellow bus delivers my other precious cargo.

I was going to talk about ripping wallpaper down in of our downstairs rooms, or about Ava’s art project.  How I am certainly NOT an art teacher – that any aspirations I may have had for artistic expression were squashed in the first grade by a teacher who sent me to the office (a fearsome place back then, when corporal punishment still existed) for not finishing my painting when she told me to – but that I can still identify and mix the three primary colors  to create secondary colors.

I was going to explain how solutions to our issues take time – like everything else around here – an email sent to our I/S came back with an out-of-office auto-reply.  All week?  How can an I/S be out of the office all week, just 3 weeks into school??  And currently calls to tech support require 24 hours to return.  It’s worse than being a slave to your friendly neighborhood plumber/cable man/exterminator, who at least gives you a 3 hour window.  It turns out one can’t always trust instructions when it comes to the magical world of ever-evolving technology.  Long story short – the scanner was working, is working and together “Ian” and I scanned one of Ava’s assignments (from 2 weeks ago).  End of call.  And then later, when I attempted to actually submit all the assignments, I couldn’t find the documents!  That did it – the dam broke and I just had a good cry.  Poor Ava – she just wanted to know if this meant she’d have to go to Owie’s school now.

I was going to complain about the dog – about the new discoveries he’s made with his teeth, including one of Owen’s  new Skechers and a now loose seam of wall-to-wall carpet in our upstairs hallway.  How last Monday night he managed to slip away from us all to produce the biggest, smelliest, messiest pile of poop ever in the room currently under renovation.  I’ve never been so mad at him; however, Owen’s refusal to finish dinner at that point as he stood by the back door trying to breathe fresh air quickly diminished my impending rage to something resembling hysteria.

I was going to say that last week I felt like a mental patient, volleying back and forth between rage, tears and hysterical laughter.  Perhaps I’m on the wrong medication.  I’ve noticed how so much less important someone else’s meltdown seems after just two sips of my old Stoli martini.  How hilarious my husband’s indignant intolerance for dog farts seems.  Seriously though, what will all this mean a year from now?  Most likely it will be all forgotten.  Except for, maybe, the dog farts.  There appears to be no end to those, at the moment.

All this I wanted to say until this afternoon – when Ava got almost two units of insulin and then refused to eat lunch – exhibiting the irrational and unnerving behavior of a hypoglycemic child (which, of course, she wasn’t).  That’s when all your good-mom-healthy-eating habits fly clean out the window, when you are forced to choose between marshmallows and crackers for lunch or a call to 911.  And then she was hot.  Real hot.  100 degree fever.  A sick child is never fun, but a sick child with diabetes quickly becomes a nightmare.   In the 3 years since her diagnosis, we’ve been blessed with nothing more than a head cold – until this past May, when she got a wicked 24hr exorcist-like stomach virus that caused her blood sugars to plummet dangerously low for hours.   We were up all night, catching vomit and testing her glucose levels, praying we wouldn’t end up in the hospital before daybreak.

This beautiful morning we four were outside throwing the baseball around, both kids exhibiting the athletic prowess a proud father adores (and me failing miserably with a left shoulder injury caused by a certain 4-legged animal who shall remain nameless).  Just like that – in a space of a few hours – your child’s health takes a sudden nosedive.  (The irony of these sudden-onset fevers always coming on Sundays is not lost on me.)  So, all I thought I wanted to say – none of it matters now.