Another Painful Anniversary

Posted on

“If another child of mine were to develop diabetes, I will no longer be a nice person.” I said this many times in the months and years after Leo was diagnosed with Type 1 shortly after his first birthday. I suppose this was part fear and part warning. This weekend marks the 3rd anniversary of my 12 year old son’s diabetes diagnosis.

It was an uncomfortably hot and humid day in early July, not unlike how it feels today. I was driving a carpool of six boys to camp. Since I was running late, I asked Sam to help me out by checking Leo’s blood sugar. After impressing his friends by checking him, he announced he was going to check himself. I told him not to do this. It was annoying and unnecessary, and it wasted more test strips which would ultimately end up on the seats of my already messy car. He checked anyway and said, “Mom, I’m 400.” Just like that. I felt my stomach sink, and somehow managed to calmly say “wash off your hands with your water bottle, maybe it’s the sunscreen. No such luck. “Ok mom, it’s 390, I’m coming down.”

It was so far from “okay”, this BG was quadruple that of a healthy nine year old boy. Sam had not been having a great summer. He had started nightly shots for Growth Hormone (GH) deficiency nine days before this. Three days later he had a head injury on a boat (the camp’s first emergency on opening day) and ended up with 30 stitches above his eyebrow. Who knows if either of these things triggered the diabetes?  I didn’t have time to think.  At the moment, I needed to remain calm during the last five minutes of the slow,bumpy road  into the camp parking lot. I drop-kicked the kids from the car and brought Sam and Leo with me to the water cooler outside of the main building. I washed off my hands, checked my own BG, hoping it was a problem with the meter. No, my BG was perfectly in range.

I called my husband Adam, who, just like me, was hoping it was a temporary side effect of the GH. The endocrinologist, sensing the panic in my voice, advised me to check his urine for ketones before deciding the next step. We went home, checked for ketones (he had none) and that’s when she told me what I feared. With numbers that high, it had to be Type 1, not just insulin resistance from the GH. Speaking to her from my bedroom, Adam remembers me slapping and digging my nails into my thighs until they were red and raw. It was the only way I could unleash my anger. Adam told Sam we needed to go, at which point he cried “I don’t want to have diabetes.” I hugged him, held back my tears , and I put  some  numbing EMLA cream to his arms for the impending blood draws.

Routine provides comfort. The car practically drove itself to the diabetes center at Columbia. The parking lot attendants knew us well and welcomed us, and we made a beeline for the registration table on the second floor. The whole staff greeted us, and we were grateful for the hospitality and familiarity. That was the only positive feeling we experienced all day. When Leo was diagnosed almost 3 years prior, I was shocked and overwhelmed. Now I was only seething with anger. When the diabetes nurse educator said “well, there are worse things” I shot her a look, eyes like daggers and replied “don’t  say that to me.” I let Adam call my mom and sisters-I didn’t want to hear their reactions. I saved my frustration for Janet, my friend who is also the mom of a diabetic and celiac son. She always answered her phone. But this time, she was in the basement of Target with bad cell service and didn’t return my call for hours.

How was Sam? He was miserable. Just like us, he knew that diabetes was an awful disease which had already altered the structure of our family life. It was difficult to comfort him. I myself had trouble with the onslaught of “well-intentioned but unhelpful comments” from friends in our community.  Well. you’re the experts now. At least you know what to do. At least you are a pediatrician.  I restrained myself from screaming “Why can’t you just say that sucks?”

We had some important decisions we needed to make immediately. Sometimes it’s good when life forces you to forge ahead, placing one foot in front of the other. One month from date of his diagnosis, I was planning to take my older two boys to Israel for my nephew’s Bar Mitzvah. We had been looking forward to this trip with my family for years.  How hard would it be to take a newly diagnosed diabetic and celiac, tree-nut allergic child to a foreign country? I had visions of dehydration in the desert heat of Masada. In the end, we did it. It was challenging, harder than I imagined, but we wanted Sam to get the message that diabetes should never hold him back from anything he wanted to do. The same went for his soccer. He had just made a new travel team in a neighboring town. The coach was also a podiatrist, a specialty all too familiar with diabetes, and he encouraged Sam to play right away starting from the day  after he was diagnosed. I will always be grateful for the enthusiastic support of his team.

Am I still a nice person?  I like to think so. But for those of you who have kindly commented  on my positive energy and grace, you should know that it has been a work in progress.  In between fingersticks, phone calls, and mood swings affected by extreme blood sugars and puberty, I work hard to focus on the snapshots of my kids which make me smile. That way, when people ask me,” How are you, and how are the kids?”  I can answer “they’re doing great.”


Work is Good

Posted on

 

I just completed my first month of work at Pediatric Associates of Southern Westchester and… work is good!

What surprised me was how quickly I started to enjoy working. I was fully aware of some of challenges: the paperless, computerized system (new to me), navigating a busy new office with different protocols and personalities, and brushing up on new vaccine schedules and antibiotic dosing. The biggest challenge is mental expenditure. After all, work is work! Everyone knows that work requires not only a commitment of time, but a commitment of mental energy and emotion. Given the breadth of my own family’s medical needs, it had been a long time before I could even think about adding work to my plate.

So, how does it feel to be back taking care of other children, other families? I love it. I remember how much I truly love working with children!  It feels great to answer questions and to put my education to the use for which it was intended.  Over the past five years questions ranged from, “Mom, where are my socks? … how many carbs and are you SURE its gluten-free…?to … should we start the steroids for his asthma, or will it make his blood sugars too high?”   My pediatric expertise helped a little, mostly when the diabetes was complicated by other medical issues. Diagnosing and treating patients who have issues beyond the scope of my children’s issues is, for lack of a better term, refreshing. I am helping them, even as I walk them out of the exam room.   I do not need to take their medical problems home with me. Being one step removed from the medical issues of my patients is an important distinction from the past several years at home with my family.

How is my own family doing? So far, they have been good. The school nurses call or text about Leo’s blood sugars, and my patients don’t seem to mind the very brief interruption. The days are busy, sometimes head-spinning and often no bathroom breaks for several hours. I completely lose track of time. I am happy my own children have the structure of school to check and report blood sugars. The unstructured time will be more difficult, I am sure.

And the juggling act of every working mother?  Shopping at four different stores to accommodate the dietary restrictions is challenging, and making the kids their favorite foods “re-heated, not fresh” isn’t perfect. Leo asks me daily about my work schedule (which is about 23 hours/week) and Ben sometimes waits for me to come home to start studying.  It is very heart-warming to hear the pitter-patter of feet and feel the warm hugs when I walk in the door. Those moments might be one of the best parts of going back to work.  Then, of course,  I start hearing … I’m hungry …What can I eat?  Part of me wants to run back to my car. But, that too, is a “joy” of motherhood…

 


A Weekend of Debuts… with Mixed Reviews

Posted on

This past weekend was filled with debuts for our family: Sam attended the first Bat Mitzvah of one of his own friends.   Ben starred in his school play.  Leo played his first “coach-pitched” little league game (a step up from t-ball, he reminded me).  All good things, but I was definitely a bit stressed about how the “food-focused events” would affect my kids, both physically and emotionally.

The Bar/Bat Mitzvah “circuit” occurs throughout school grades 6-8. It signifies the coming of age and onset of adult responsibility according to Jewish law. Celebrations range from a simple luncheon after the service to extravagant parties. For our family, the most difficult factor is obviously the food. The logistics of attending Bar mitzvah often include complicated carpool arrangements, conflicting schedules, sports, other family events, and late night pick-ups. I’ve been hearing about it for years. Since Sam would be gone for most of the day and the Bat Mitzvah was 40 minutes away, I needed to make sure he was prepared for anything. He was not in a school or camp setting where he had back-ups of everything in the nurse’s office.

Checklist for Sam’s bag:

  • Replenish test strips -Glucose tablets/sweet-tarts for lows,
  • Glucagon pen for bad lows (unlikely, but better to be safe)
  • Epi-pen for his anaphylactic flax allergy (flax is included in many foods today, especially low-fiber GF foods)
  • Benadryl  (for his less severe oral allergy symptoms which occur with most fruits and nuts)
  • Lactaid pills in case he is lucky enough to eat ice cream instead of eating the gluten-free cupcake I packed for him (which only tastes good if it’s heated directly prior to eating).
  • Whoops:- WHERE IS HIS PHONE? GO CHARGE IT! NOW!!

Everything was ready by the time his friend came to pick him up.  I breathed a quick sigh of relief as I saw the two of them exchange smirks at their dress clothes, as if they were saying “Well, here we go.”

Although Ben was excited to be chosen as Conrad, the star of Bye–Bye Birdie, he wasn’t so happy about the cast party that was planned for the break between the morning and afternoon performances. Everybody was talking about the special Bye-Bye Birdie cake, brownies, and pizza. I told him I would substitute as well as I could. Unfortunately, it was logistically impossible to get fresh GF pizza to the school in time for the party. There was no way to reheat a cold slice so it would be edible. I tried my best to distract him from the party and focus on the play, but he was quite upset and begged me not to make him go to his cast party. “The cake and all the food is going to look so good, I’m going to be annoyed when I see and smell it!”

It’s hard to be different, especially when the substitutions just don’t cut it. My older boys have had celiac disease for 7 years. Should they be used to this? Sure, but it’s never that easy.

I do say: “Focus on the positive, remember everyone has something they need to deal with.” I’m still trying to figure out the best way to diffuse their stress while anticipating an event and deal with disappointment which may occur. I know that in time they will learn to manage their expectations. Explaining how they also have friends with other food allergies only goes so far.  They are young, and they have big eyes and hungry stomachs. The snacks I send in the Tupperware are, according to them, never quite as good.

So, how did the weekend turn out?  Sam enjoyed celebrating with friends, but he did have a few low BG’s because lunch was delayed. He also made a point of telling me that he would have loved to try those “enormous cookies and brownies”. Ben woke up with laryngitis on the day of his performance, but he did his best and he looked smashing as Conrad Birdie. He ate what I brought him for the party, grimaced a little at the cake, and then ran off with his friends. And, Leo, my little slugger? He hit a double in both of his games, and he was so proud that he beamed while sharing this news with everyone.

Despite the hassles and tension created by food restrictions and diabetic concerns, we managed to squeeze out a good weekend of debuts and created some great memories. Similar to photography, we can try to focus on the best ones, delete the bad ones, and be more prepared for next time.


MDMommy Back to Work

Posted on

Pop the champagne! I am going back to work. Starting in May, I’ll be working part-time in a private pediatric practice in New Rochelle with three other women. I’m excited to get back into practice. Over the past 5 years, dealing with my own children’s many issues has been akin to running a multispecialty  clinic in my own house. But taking care of other children is a huge step! Of course I am a little nervous about taking on the responsibility of new patients, but I figure this is as good a time as any.

The decision to go back to work speaks volumes about the state of our family. At least for the moment, the children have reached a certain level of stability. Type 1 DM is never predictable or stable, but their control has been better over the past 6-9 months. Having Leo in school with a great nurse has made a huge difference, and I have been training her to make decisions without me so she doesn’t need to call me five times a day. It’s not that I mind when she calls, but she is getting to know his patterns better.

What about me?   I have accepted that I cannot cure diabetes.  I will continue to manage my children as well as I can. This is challenging and often heart- breaking  work. Just this morning, Sam cried after a painful site change and Leo’s blood sugars were too high last night for him to have dessert. Why on earth would I want to expand my panel of patients?

I can’t cure my own kids, but it may feel good to go back to work where I can diagnose and treat a strep throat or an ear infection. I can reassure an anxious first-time mom that she is doing a great job with her newborn.  I think this will be gratifying. My own kids are also getting bigger! I miss seeing the wonder of a nine month old as she begins to discover the world, the feisty pre-schoolers who usually save their tantrums for outside the office. Spending time with my 5 month old niece has reminded me of these fun stages. (See Magic of a Baby post http://mdmommy.com/?m=201211).

This did not happen overnight. The day after Leo was diagnosed, I asked “How can I go back to treating sniffles?”  I was overwhelmed with enormity of diabetes and worried that I would never again have compassion or patience for simple childhood ailments. For a time, I winced when people  complained to  me about the difficulty of raising children who were “picky eaters.”  What makes me ready now?  I can’t say for sure. Time, adjustment, acceptance?  I also realize that pediatrics and parenting share some basic skills. While some problem-solving may be scientific and clear-cut, both require a degree of intellectual creativity and patience. And who knows? As many career moms claim about their own professions, there is a good chance that on many days I will be more successful at doctoring than I will be at parenting.

So, here’s to going back to work. Again. Outside the home. For other people. To my friends, family and mentors who have encouraged me to take this step, I thank you. To my wonderfully supportive yet understandably apprehensive husband, I love you. Even during the bad nights and weekends on call.

I’ll keep you posted.


MDMommy Goes to Washington

Posted on

I just returned from a few exciting days at a JDRF conference in Washington DC, where we advocated for our Congressman to continue to support diabetes research. You may ask how did this happen, given that you know I haven’t left my children for more than a 24 hour period since they developed type 1 diabetes (T1D)? Up until now, my involvement in JDRF has been both community outreach  and fundraising . A few weeks ago ,Michael, the Government Relations rep from our chapter notified us that he would be unable to attend this annual meeting and asked if anyone would go in his place. With the sequester and sensitive economic climate, it was important that we were represented.  Why not? A few days away with like-minded people advocating for a cause so close to my heart? Sure. As far as speaking to members of Congress, I looked forward to the opportunity. My father is an elected official; he has been a judge for over forty years. I have been speaking with politicians and strangers my entire life. Most importantly, the kids were finally stable enough for me to consider the trip. I started planning as soon as I cleared it with my husband Adam. I would be away for about 3 days.

The experience was…powerful. About 200 attendees from all over the country to represent people with T1D. The days and evenings leading up to our Capitol Hill meetings were packed with sessions and workshops.  One session gave everyone the opportunity to stand up and briefly introduce themselves and their connection to diabetes. We were not all parents of diabetics. Many people had diabetes themselves or were there for their affected spouses, siblings, grandchildren, cousins, nieces, nephews or friends. Unfortunately, many fit into more than just one of these categories. I was both moved and saddened by this. It was inspiring to feel the energy and commitment of this diverse group, but many stories demonstrated the tremendous impact of diabetes on the entire family. Not only is T1D a complicated disease, but it carries a strong genetic risk for future generations. There is strength in numbers, however, and we felt solidarity as a group in DC.  As a woman from Iowa said “the synergy in this room is palpable.”

The general tone of the conference was one I would call “optimistic realism.” We learned more about research developments like the artificial pancreas project as well as a new “smart” insulin and different ways to reboot the immune system so it won’t attack the insulin-producing cells. Most of us had heard about this research before, but was good to hear the progress.  I met some amazing people and heard firsthand some very interesting things: One woman was expecting to get a diabetic alert dog and other people were using new monitoring technology that I’ve been considering for my own children. A female attorney showed me the ankle holster where she holds her pump (what a great idea!). During the catered buffets and open bar receptions, we were able to relax, network and share some of our zany diabetes stories (see my favorites in a previous post  http://mdmommy.com/?m=201210).

It was great not to be “first call” for all the monitoring and planning at home, although my phone allowed me to be a close second. “Do I believe the packaging on the bag of GF bagels? 50g each? And Sam has running low in the 40’s tonight, I’m a little nervous about him going to sleep.”  A few of us got calls from our spouses during Sunday dinner asking what to pack for lunches and what they should tell the school nurse. We were in good company. We were keenly aware of the pervasiveness of diabetes and how it seeps into every aspect of our lives. But I felt that we had all been processing this for a while, and so we took comfort in knowing that the treatment of diabetes will only continue to get better and easier, until we have a cure. “Less Until None” was the motto used during the conference.

My favorite quote of the weekend was during the presentation of a remarkable woman, Suzy Watkins, who had used the artificial pancreas as part of a recent study. Recognizing the amount of thought  and decision making a type 1 diabetic makes on a daily basis, she asked “What will we do with the collective brain capacity of diabetics once a cure is found?” she asked. “We’ll find a cure for cancer or …(another disease)..”  It was a privilege for me to be among a group of such bright, thoughtful and dynamic people.

As far as the meetings on the Hill, they went well and we were appropriately exhausted at the end of the day. My only complaint about the weekend … I was really hoping for cherry blossoms since it was March in DC rather than the rain/snow/sleet we had. Oh well, there’s always next year. I’ll  have to come up with another excuse to take Michael’s place and have Adam watch the kids. Hmmm.


Mom’s Report Card: The A1C

Posted on

Tomorrow is our quarterly visit to the pediatric endocrinologist where we speak to the doctor after the kids are weighed, measured and we test their blood’s HbAlc level. The hemoglobin A1c measures blood sugar control over the previous 3 months. When blood sugar is high it sticks to the red blood cells.  The  most simple way to describe it is that the amount of “stickiness” or “glycosylation” can be tested every 3 months, the average lifetime of a red blood cell.

A normal A1c value is under 6. For children, endocrinologists say anything below 8.2 is fine in order to prevent complications from high BG’s. Doctors find the A1c’s somewhat useful, especially with teens who may be less compliant with monitoring themselves. But there are dangers in trying to attain perfect A1c’s as well.  Too many low BG’s aren’t good because they bring a higher risk for seizures, loss of consciousness, or worse…

In this day and age, advanced technology allows for easier testing and the ability to give insulin through a pump instead of injections. Leo’s  glucometer  may be used as a remote to tell the pump how much insulin to give him while he runs around the room (as long as he doesn’t run OUT of the room)!  What can be easier than that? In the past, people had to boil syringes and often went several weeks or months to check a BG. Before insulin was discovered in 1921, Type 1 diabetes was a death sentence. These patients usually survived up to one year after they were diagnosed. I still shudder at the thought of this, and always will.

Of course we are grateful or these miraculous advances, but they come with a price. As parents we do anything and everything for the health and well-being of our kids. This is seen in every aspect of life, certainly not just diabetes. The ability to micromanage blood sugars by testing 15 times a day and constantly tweaking insulin regimens can make anyone CRAZY.  Parents quickly learn what I and many other doctors never knew until I was in it myself: diabetes is like a living, dynamic entity. By this, I mean that no matter how closely we count carbohydrates and adjust insulin amounts, we often can’t get it right. As I have mentioned several times, there are just too many other factors. But that doesn’t stop us from trying even harder! We feel that we have more control and will do whatever it takes. Part of it is parental guilt, I’m sure. They are our children, and nothing is more important than their health. We become stressed, frustrated, and exhausted.

Early on after my kids were diagnosed, my friends saw the hypervigilance that diabetes required and asked me “what did people do before this technology?” My brief reply was “they may have had more complications.”  The detailed list of complications, however, was imprinted on my brain since medical school and it ended with the worst one: shortened lifespan.

At a recent meet-up for parents of diabetics, one mother spoke about her 22 year old son who is a bright, successful, athletic college graduate diagnosed with Type 1 diabetes at age 3. Her son is doing well now, as do many Type 1 diabetics.  She said, “I actually think it’s so much harder for all of you now since you have these tools, you have so much angst that comes with the perception of having more control.” In a way, we were all relieved to hear her acknowledge this.  Although we appreciate the technology, we feel helpless when the erratic blood sugar swings occur despite our best efforts.

As concerned parents, what are we to do? The best advice I have heard is the following : Living with diabetes is a marathon, not a sprint. I try to remember this.  If it was something that affected our own health, maybe we could let up for a while and take a short break from it. Because it’s our children, we continue to monitor at the intense pace that technology allows. While they are young, we can still help our children manage their diabetes and teach them how to be independent and responsible.  We learn that it is a marathon, and there are bad weeks and bad months. At 6 years old, Leo’s diabetes management is much easier than it was over the past 5 years, while Sam is entering adolescence and his management is becoming more difficult. I can only hope that I have succeeded helping him learn how to care for himself. After all, this is what they will need to do after they leave our homes for college and beyond.  Then we can stand by the sidelines and cheer them on as they continue to run the marathon.

I wonder what their A1c’s will be tomorrow…


March Madness

Posted on

In the winter of 2011, Leo was hospitalized for several days for a bout of gastroenteritis that further complicated his diabetes management.  While this hospital admission was not fun, at least there were no surprises   (i.e. no unexpected diagnoses). After his discharge, my husband Adam realized that he needed to start addressing his own health issues.  He had been blaming his stomach discomfort on his reflux but his symptoms were getting worse. While Leo and I were in the hospital, Adam developed left sided chest pain after shoveling our driveway. This was obviously worrisome and he FINALLY agreed to see his doctor.  Thankfully, his cardiac work-up was fine.  But his GI work-up revealed a clear-cut case of “cholecystitis” which means gallbladder disease/stones and inflammation. So we scheduled surgery ASAP. It was done laparoscopically (minimally invasive) and he recovered well.

Gallbladder disease is not uncommon for people in their 40’s, and patients usually recover well because the procedure is now done laparascopically. What I didn’t tell Adam is that when I was doing my third year clerkships in medical school, my first patient was a man with terrible complications from a laparascopic cholecystectomy.   I also recall that Andy Warhol died unexpectedly from a routine cholecystectomy at New York Hospital, on a floor right near the pediatric ward where I interned.  One of the problems with being a physician is that you can always think of a potential bad outcome. That is what we are trained to do!

I must admit that upon hearing Adam’s diagnosis, I was concerned for him but there was a little voice inside of me screaming “what about me?” I was so exhausted from the week in the hospital with Leo that I couldn’t imagine where I would get the strength to care for the whole family. Adam’s post-op recovery entailed 2 weeks of no driving and 6 weeks of not lifting anything heavier than 10 Lbs. So many people wanted to help, but it is hard to help out with what we do. All the carbohydrate counting, measuring, monitoring, cooking, pump site changes, growth hormone injections, etc…

A few days after Adam’s discharge we celebrated the festive holiday of Purim,  when the Jewish people commemorate  their cunning victory over an evil Persian leader from ancient times. I took my boys to our temple’s Purim Carnival, which is always loud, over stimulating and filled with food that my kids can’t and shouldn’t eat. It was challenging not to have Adam with me. Although it was fun to see our friends , I couldn’t wait to get home.  Monday, the following day, was a dismal mix of rain/snow/sleet. I was so tired that I forgot the kids were staying later at school for me to pick them up for Tae Kwon Do. I realized this when they weren’t home by 4:15 and drove to school to pick them up.  I was too exhausted to bring them to TKD, so I just brought them home. I remember driving and thinking   now it’s 5pm and I am so tired that I either need a nap or a large coffee. Leo and our dog Pepper were excited to see the boys and ran around the hall entrance excitedly. Within minutes of taking off my shoes, I heard a loud scream. There was Leo, holding his head, blood gushing everywhere. Other than where the walls meet, there are no sharp corners in my house. I have seen enough head injuries in my practice from fireplace mantles, tables and entertainment centers that all of the corners in my house are padded. Even our piano bench has a “diaper” on it.

Leo had collided with the wall corner, and he was standing on our carpet while his head continued to bleed. After bringing him to the bathroom to stop the bleeding with a pressure dressing and ice, we got ready to go to the ER and meet our friend the plastic surgeon (I now have his cell number). Leo is a resilient kid. He managed to eat some dinner while I got his test kit/food and his Nintendo DS ready. As Adam helped put on his shoes, Leo looked up at us and asked “How many days am I going to have to stay in the hospital this time?” God Bless my brave, funny, rambunctious boy….

It was a non-eventful trip to the ER. Irrigation to the wound site, 3 staples to the scalp, and we were quickly on our way home. With Leo’s friendly face, big cheeks and sense of humor, he is a magnet for good will and smiles wherever he goes. And he is so tolerant of any physical manipulation that people are always impressed with his stoicism.  Although the outside world doesn’t see his tantrums and devilish behavior at home, I’m sure it’s not hard to imagine.  But, as everyone knows, all of what happened on that particular Monday is regular kid’s stuff. It had nothing to do with diabetes or other chronic issues. The fallout is that I was even more drained that night. I went to sleep fantasizing about a time in my future when I wouldn’t be so important to so many people.

At school the following day, Leo was excited to “show and share” his wound and staples with his classmates. Later that night I brought his brothers to watch him in the nursery school Purim Play. Low and behold, our plastic surgeon sat in the row behind us, watching his 2 year old twins perform…


‘Tis the Season…

Posted on

‘Tis the Season…for Colds and Flu

7am:   Sam, my 12 year old wakes up not feeling well this morning and doesn’t want to go to school. He generally enjoys school and he looked fine, but his blood sugars had been high overnight.  This sometimes this indicates the onset of a cold. With diabetes it’s hard to separate all the factors. Sometimes, after a night of consistently high blood sugars, he wakes up more cranky than usual.  We are able to give insulin through the pump during the night to bring the blood sugar down without waking him, which, of course we did. The body doesn’t feel well when so much sugar is coursing through its veins. Is that why he woke up sluggish and cranky?  But, then again, he’s a pre-adolescent boy with a math test today. However, I must bear in mind the other diabetic in our household: When our 6 year old son wakes up from a “high” night, he, too, tends to be extra cranky.

Kids get on the average of 8- 10 colds per year and they are more frequent during the winter season. I didn’t need my MD and specialty in Pediatrics to tell me this.  But it’s so much harder when they have other medical issues. With diabetes, anything that sets the body slightly out of whack can affect their blood sugars. This includes growth spurts, viral infections, weather changes, altitude and medications. When my kids get sick, this triggers their asthma which requires them to take more medications so they can breathe well and not get sicker. Also, when the blood sugars are high, it is harder for the body to fight infection. This is because the white blood cells (neutrophils) work more slowly. It is a vicious cycle. It is easier for them to get sick and it is harder and takes longer for them to get better.  They feel worse when they are sick because abnormal blood sugars make you feel like CRAP. So that adds more crap on top of your general sick crappiness.  It is also hard to predict into what a cold will blossom. One summer his cold at sleepaway camp triggered a full-blown asthma attack which required steroids. His blood sugars were so unstable he went to the ER and stayed home for a week. Thankfully, this is not always the case, but there is the tension of never knowing which way the wind will blow. We can only hope for the best.

7:45 Sam needs to either get out of bed and get dressed for school or stay home for the day.  I am hoping for school. He has no fever or worrisome cold signs, perhaps just a little wheezy. He gets out of bed, takes his insulin, inhalers and breakfast and goes to school.

8:45 Sam calls from school to tell me his BG was 354, so he felt high, but he also felt low because the albuterol  for asthma makes him feel jittery and low. I tell him to retest and call in 20 minutes.. He does with this report:  his blood sugar is even higher and he is starting to cough. No doubt now: Time to go pick him up.

While Sam leaves the room to pack his bag, I am grateful the school nurse hears me out over the phone. “I feel bad for him…it sucks for him to feel like this and I can’t do anything to make him feel better.”  She replies, “But I see him every day and he has become so strong, so robust as a person. I see others who suffer more for far less things. Sam is doing fine.”

Her kind words reassure me. Of course, isn’t that what we all want to hear? That our children are able to confront their challenges and master their environments?  I’m certainly thankful that he is able to show these strong character traits to the outside world.  It makes me proud and it makes me smile. But, my smile is temporary. Reality hits as I approach school and I wonder how bad this cold will be? How will it affect his BGs over the next week? And, finally: how long until we return to a level of “normalcy?”


Gratitude: Top 10 List

Posted on

At the end of each calendar year, I do what most people do.  I take stock of life over the last twelve months and prepare to move forward into the new year. The fall of 2012 is forever scarred by the tragedy in Newtown and the disaster that Hurricane Sandy left in its wake. Of course, I am very saddened by this, and  I wish the families comfort and strength in the future.

Our family has been surprisingly … ok.  Upon hearing about how we fared in the storm, one friend remarked, “Wow, you sure threw everyone off this time.”  Most of my friends lost power for extended time periods and a few had property damage.  We felt grateful but awkward about our fortunate situation.  We had what I described as “power guilt.” For the first time in a while, we found ourselves in a position to help out the people who have given us so much. I discovered something else as well. Although I do believe in the oft repeated phrase “it is easier and more gratifying to give than to receive,” it can also be frustrating. Sure, we hosted meals, friends, electronic devices, showers, the occasional dog and hamster.  But I quickly learned that my grateful friends wanted what we couldn’t give them: the comforts of their own homes.

To our many friends who have been there for us in countless ways, I want to thank you. These are tangible ways they  have helped.

1) My high school friends: Upon hearing about  Leo’s diabetes diagnosis compounded by the celiac disease of the other boys, they generously contributed much needed gift cards to Whole Foods.

2) My friend researched and distributed GF recipes to people to prepare meals for us during the week that Leo was diagnosed with diabetes. She even requested the chefs include the carbohydrate counts with the food delivery!

3) The friends who drove to pick up our cars after we rode the ambulance to the tertiary care hospital from the after-hours clinic.

4) My friend who packed her three young kids in the car and drove to a GF bakery across the county to  drop off treats for Ben when he was in the hospital with swine flu.

5) My anesthesiologist friend who has supplied us with several years of tegaderm  tape. These  have made the kid’s  pump sites  last longer and reduced  my headaches from insurance companies.

6) Our friends who welcome the challenge of having us over with our three rambunctious boys and their crazy dietary restrictions.

7) My friend who ordered a Carvel cake with fudge in the center instead of crunchies for her son’s birthday so Sam could eat it.

8) My friend who always has a cabinet of GF treats for Sam for playdates .  One less worry for me.

9) Our friends who generously support us each year in JDRF Walk to Cure diabetes

10) The random calls, texts and emails just checking in…

This list has a few intentions. First, it is meant as a huge “Thank You” to our friends for all you have done, we will never forget it. We are blessed to have you in our lives. Second, for those of you in similar situations who just don’t know how to respond when people ask “how can I help?”, refer  them to this list. Deep in our hearts, we hope and pray for a cure for diabetes. In the meantime, there are many tangible and thoughtful ways that others can help you. Please accept their assistance. Giving is contagious, and one day you will have the opportunity to return the kindness.

Wishing everyone a wonderful year in 2013!


Not Complaining, Just Explaining…

Posted on

Yesterday I got an email from D, the mother of one of Leo’s new school friends . It touched on three important school age topics:  an upcoming birthday party, scheduling a playdate, and choice of summer day camp.  After a short dialogue, D replied “Wow, I am beginning to see how every decision you make is influenced by his medical condition.” I wanted to reach through cyberspace and hug her. I was just so happy she understood.

A few years ago I had shared my fears with my good friend T. I have always been a friendly “people” person. But after two of my kids were diagnosed with diabetes, I felt strange meeting new people. I even felt strange seeing old friends or acquaintances. It was just too difficult to be around people who didn’t understand our life. It is a completely different reality than a family life without Type 1 diabetes, not to mention celiac disease and food allergies…

I didn’t want to alienate people and I didn’t want their pity. I just wanted them to get it. If you spent an hour or two with my family or met me for lunch, you would see how the diabetes weighs in on everything. At home it’s : You’re hungry again? When is the last time you tested your blood sugar?  Is tonight site change night? MOM, I need more strips! “ Meeting for lunch or coffee, it’s a call from the school nurse, “His blood sugar is 250 and it’s time for their snack but he still has insulin on board from breakfast, what should we do?”  Or it’s Sam calling from middle school, “Mom, I’m over 300 and I really don’t feel well but I don’t want to stay at the nurse and I’m so hungry…

Five years into this complicated life, I have accepted the reality. I have gotten fairly good at multi-tasking, but that can be dangerous. For example, I really can’t speak on the phone or in person to anyone while I am giving the kids insulin through their pump. If I make a mistake, the consequences could be HUGE! I call this “distracted bolusing.”  As you can see from my daily snapshot below, regardless of where I am, I need to take calls from the nurse, probably appearing rude.

6:45am – Wake up, test kids’ BG (blood glucose) without waking them. Depending on their numbers either give them insulin OR juice OR if they are ok, go downstairs and weigh out their breakfast cereal and milk.

7am – Get kids up and dressed, feed them and finish making lunches (you may ask, why not make them the night before?  GF (gluten-free) bread is unpalatable unless it’s fresh , so making it the night before just doesn’t work). Fill out daily BG log with correct carb counts for the day’s lunch and snack and put in folder for nurse,

7:45am – Before leaving for school, make sure kids have their test kits with adequate test trips and tablets for possible lows.

8:00-3:30- YES! Time for coffee, daily errands which include food shopping-4  different stores to cover produce and GF stuff and home cooking/baking. Phone calls to insurance companies to make sure we have enough insulin, pump, and meter supplies. Volunteering for JDRF, school, and blogging as time permits.

Field calls from nurses every 2 hours for Ari and from Sam , whenever he needs me.

Easiest time of day, unless I need to :

-pick up Leo because his BG’s remain high throughout the day and he needs a site change

– OR they somehow forgot their lunch that I already put in their bag (how does that happen, I always      wonder) and since there is no GF hot lunch offered in school, I need to bring lunch to school

-OR they somehow forgot their test kit in THE CAR (again, how does it mysteriously jump out of their bag in the first place?  Perhaps they were checking for homework en route to school?) Sam did this on the morning my niece was born. I was so angry. He has a spare kit in school, but that one was out of strips)

3:45pm – Kids home, test and give insulin for snack, start homework, dinner. For any after school activities, be sure they have a GF snack, carefully pre-weighed and remember to bring test kit

7-8:30pm – Shower, dessert (differs depending on their post-dinner BGs ), insulin pump site change every 2-3 nights (big needle, painful , moans and groans), bedtime.

10:30pm, 12:30 pm, 3:00 am   Check BG’s and give insulin or juice, honey or nothing depending on number.

6:45am Start over

Above is a good day, but our mantra is “expect the unexpected”.  Weekends and holidays can be brutal as most family and child-related activities are food -focused. We could stay in a bubble and constantly stick to a routine, but our kids have reached ages where we want to step out of the bubble and have new experiences.

It’s all doable. Don’t get me wrong. It’s gotten a lot easier over the years, especially now that Leo is in school all day. Diabetes has brought our worries and stresses of child rearing to whole new level. But here’s  the thing…I am inspired by how well my children handle their challenges every day, even in the middle of the night when they need to wake up briefly to correct a low BG by drinking juice.  Diabetes may be a burden for me, but at the end of the day it’s their burden.  The joy I feel when I watch them laugh hysterically with their friends, and the pride I feel when they achieve their milestones…well,  that‘s reached a whole new level as well.