11 Years With a Life Changing Diagnosis

Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to try something relatively new. While Andy was not the first patient in the United States to try it, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months we had given him insulin shots and hooked him up to an insulin pump to keep him alive. We were prepared to spend a lifetime of checks by blood sugars 8-10 times a day, changing out insulin pumps every 3 days and counting carbs for every single morsel of food that went into his mouth.

When we were admitted to the hospital on that night so long ago, we had no idea what to expect. Our doctor was “cautiously optimistic” that this new treatment would work. But even knowing that it might “work”, we knew we were paving an entirely new path in the medical world. Diabetics, especially those with Type 1 didn’t just come off of insulin. We were, as my husband puts it, a freak show on the diabetic floor. While other patients were being admitted in DKA and being treated with insulin, we were starting with a pill in the hopes of stopping insulin. Being a teaching hospital, we were a virtual merry-go-round of student doctor groups. We recounted our story from the last two years of our life, confirming that there was no family history of this on either side. No, I didn’t have gestational diabetes. Yes, he was exclusively breastfed before the initial diagnosis. And on and on for an entire week.

In the hospital with Aunt Alicia

Now we probably check Andy’s blood sugar once every few months. His last A1c was 4.7% which translates to an average blood sugar (in US terms) of about 88 which is right in the middle of normal. He takes 67.5-70mg of glyburide a day, which is roughly 3.5 times the recommended maximum dose of an adult with Type 2 Diabetes.

We don’t know everything there is to know yet. We still deal with all of the co-morbid symptoms like developmental delays and seizures. Some of those issues have gotten better with time, therapy, and an ocean of patience (at which I’m admittedly not always very good). But if being a pioneer and paving the way for new families (and even his own sister) is our purpose, then we have gladly taken on that role. We will continue to search for new treatments that might make his life easier and help him to be a more functional person. He is such a happy person and is growing into a strong young man. I can’t wait to see what the next phase in his life will bring.

Andy this past Christmas with Santa

Closing the Gap: The First Two Weeks on Carbamazepine

We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects.  We started him on a small dose of 2.5 ml (50 mg) twice per day for the first week and then increased it up to 5 ml (100 mg) twice per day for the second week.  We will continue to increase up to 10 ml (200 mg) twice per day and then get some blood work done to see how he is doing.

No Adverse Side Effects

Our doctor prepared us for the worst by telling us all of the bad reactions to look for; bad rash, grand mal seizures, and discolored urine, etc. We even received a prescription for ??? to have on hand in case of a seizure lasting longer than 5 minutes. That was the one side effect, out of all of them, that scared me the worst. Just thinking about what I would have to do if that happened, insert a medicine in a place I DO NOT want to see on my 12 year old son, sent me into near panic attacks the days leading up to Day 1.

Not only did I have a prescription in case of emergency, I armed myself with support too. As the kids were off school on that Friday and Monday (Easter Holiday), Dan and I both opted to take a day off work and asked one of our babysitters to come as backup. That Friday, as nervous as I was, we tried to make the day as normal as possible for the kids. We played with the kids, building Lego houses and watching videos. Then because Andy wanted stars, we took a trip to the store. We went to Walmart for his favorite foam stars, then Good Will for some much needed shorts, and an Easter dress for Katie. All the while, I was watching him like a hawk and looking for any sign of a new twitch or an unexpected behavior. Thankfully, it never happened.

Improvements Already?

The rest of the weekend and into the next week, Dan and I watched and waited. We were rewarded, not only with no negative events, but, dare I say, improved behaviors? I know it is way to early to tell, but we almost immediately saw Andy be more calm and less aggressive. He even started talking more and his words were more understandable. At least, that’s what we think we have seen.

The hardest part of hope as a parent, is to have an unbiased opinion. In order to make sure we were getting the most accurate data, Andy underwent some baseline testing on the Thursday morning prior to starting the medicine. We will do some follow up testing in 3-6 months. In addition, only his school director knows he is on the medicine, but we are not telling his teachers yet. That way, we can get some unbiased data from them, similar to a “blind study” in the research arena.

Some of the other areas of improvement I’ve personally seen is cooperation with nighttime routines (taking medicine, brushing teeth, going to bed), cooperation with checking blood sugars, calmer behavior in the afternoons, and even less aggression toward me like pinching and hitting. I did see a little increase in the aggression a couple of days this week, but I was also down with the flu. Sometimes, when mom is down, the kids will try to get away with what they can. But isn’t that just a typical childhood behavior in general? LOL

Affect on Blood Sugar

One side effect we did experience, but were really expecting, was a decrease in blood sugars. The question of, if this medicine is closing the potassium channels in the brain, will it, by default, also close potassium channels in the pancreas, was answered pretty quickly. We checked his blood sugars before every meal, when he got home from school, and any other time he seemed to be acting low just in case. The lowest we have seen so far was a 54. That one happened on the first weekend on Sunday night. We were at the end of a long day, from church in the morning, to lunch and and Easter Egg hunt with the neighbors, to playing outside most of the afternoon. It was after 8:00 when I finally started preparing dinner and Andy started rummaging in the kitchen and trying to grab food from the cabinets, the fridge and even right out from my hands. He kept saying he was hungry and needed to eat dinner. Finally I stopped and realized what must be happening and checked him. He was at 54 so I quickly threw together a sandwich and some grapes so he could eat.

Since then, we have seen a couple of 60’s and 70’s, so we lowered his dose of glyburide by a pill in the morning and in the evening. He has stabilized for now, but we will continue to keep a close eye on that until we are sure he is in a better range. I guess the advantage to him being so stable for the last several years is that he is fully hypo-aware and can tell us he needs to eat when he starts to feel it. That was something we never experienced when he was a baby and on insulin.

Going Forward

We still have two more weeks of increasing and waiting to see if there are any issues. There is still a small possibility that seizures can occur, so we are not out of the woods yet. But with each passing day, I get more convinced this was the right move. We still have a long road ahead of us, but with time, hopefully, Andy can start to learn more skills and have a better future. Isn’t that what any parent wants for their child?

Andy’s Story: Part III : Insulin Injections

Andy at 7 months old just after his first Thanksgiving meal.

So after a long week in the hospital and 3 days of crash courses in how to check blood sugars, give shots, and count carbs, we were sent home with our baby boy.  How do you explain how hard it is to calculate carbs for a breastfed baby?  There are no words.  He was an anomaly according to the endocrinologist at LeBohneurChildren’s Hospital.  They had never seen a 4 month old with diabetes.  Therefore, their only explanation was that he was just a very early onset Type 1 diabetes.  While we did learn a lot about Type 1 diabetes and insulin, a lot of the information just didn’t pertain to us.  Andy was already eating cereal and was starting to eat some baby foods, but for the most part, he was being breastfed and bottle fed for the first two months of his diagnosis.  His blood sugars were wildly swinging from the lower 20’s to the upper 500’s.  It was not unusual to see the meter read “HI” at least once every two weeks.  Worse still was the fact that he had to relearn all of those milestones he had achieved in the first 3 1/2 months of his life.  He had to learn how to hold his head up, roll over, coo, make sounds.  It was not easy and it did not come quickly for him.

By the middle of October, he was done with breastmilk.  He just decided he was done one day and didn’t want it anymore.  I think I was more crushed by this than he was.  He was ready to move on to baby foods and formula, which in some aspect did make carb counting a little easier, even if measuring insulin wasn’t.  Andy finally started to roll over around the beginning of November so he was nearly 7 months old.  He began to push up with his hands when he was on his tummy, but didn’t fully sit up until he was over 8 months old around Christmas time.  We began to notice that he was late in everything, but didn’t think it was really significant because at that time he was only a couple of months behind. 

In January, we went to the Endocrinologist again and voiced our frustrations over the unpredictable blood sugars and the trouble with giving him minuscule amounts of insulin that were impossible to measure with even the smallest needle.  We discussed getting diluted insulin, but I was adamant that I wanted a pump.  I had done some research and just knew that this would be so much better for us.   Our doctor agreed, though I think he was still not positive we could handle it.  He began the paper work for getting the pump. 

While we waited, Andy continued to grow, and grow, and grow.  His length did not increase as much as his weight.  One thing I learned later about insulin is that it causes you to gain weight.  Andy did this part very well.  By March, he was a whopping 23 pounds and was eating like a champ.  Except, of course when we needed him to.  One of the worse parts of having a young baby withdiabetes is that you can’t make them understand.  If we had given him a shot to cover a meal and then he didn’t eat, we would end up having to force him to eat.  The images are burned into my brain.  Having to hold his head while Dan forced food into his little mouth while he was screaming, hoping and praying we wouldn’t have to give him a shot of glucagon or rush him to the ER because he was too low.  Luckily, he only had to have the glucagon one time.  Just a couple of months after diagnosis, he was in the low 20’s and just acting kind of “out of it”.  We couldn’t get him to eat so we gave him a shot of glucagon and within 5 minutes, he began to eat some rice cereal with applesauce.  Of course, his blood sugar was back up in the 500’s within a few hours.  Oh, the joys of diabetes!  Just another reason we needed a better solution.

At the beginning of April, we received the box with the pump supplies.  We watched the videos and played with the pump.  Dan even tried to practice with the infusion set by inserting the catheter in his skin, but wasn’t able to (duh!).  Later that week, we had a birthday party for his 1st birthday (a little early).  All of my family came as well as some friends from church and the school where I taught.  It was sad, but we had a sugar free angel food cake with sugar free whipped topping that I had dyed with blue food coloring.  What kid doesn’t get a regular piece of cake for his 1st birthday?  What fun is that?  Oh well, such was our life at that time.  We all had fun and enjoyed the party.  Of course everyone wanted to see the pump and asked many questions about how we would do it and where it would go.  We couldn’t answer too many questions yet, but were excited to learn very soon. Finally, on April 12th, just a week before his first birthday, we met with the Animas representative to learn all about pumping.  At the end of the class, he was hooked up.  At the time, we were prepared to continue with this treatment for the rest of his life, or until there was a cure, whichever came first.  We always believed there would be a cure some day and Andy would be able to live without insulin.  We just didn’t know at the time that we were closer to living without insulin than we could ever dream.

Andy’s Story: Part II : The Hospital

It is late tonight and I have just come to the end of three very exciting days where I have seen great improvement in Andy’s behavior and communication.  But that won’t make sense if I don’t tell the rest of his story so I guess I better fill in the blanks.

After the doctor in the ER told me about his blood sugar being high and pH being low, they transferred my very fragile little boy up to the NICU at the hospital.  The doctor were still not convinced that he was really diabetic.  They just kept saying, “babies this young just don’t get diabetes!”  But apparently, they were wrong.  I called my father to tell him because I knew Dan and I would need more than just the support of each other.  He told me they would be there as soon as they could. 

It’s amazing that I don’t even remember what happened for the next few hours.  I do remember them taking Andy to PICU and I had to wait outside while they hooked him up to monitors and a catheter.  When we were finally able to go in and see our tiny baby boy, he was unrecognizable!  There were so many wires coming off of his body that it was hard to hold him.  Even now as I write this it brings tears to my eyes.  The doctors told us that he was within hours of dying.  We were lucky they finally caught it when they did.

The next few days were a whirlwind of learning about diabetes and insulin.  My parents, Dan, Andy’s babysitter and I all sat around learning about symptoms of lows and sticking each other with saline to learn how to give a shot.  By the second night, the doctors decided to move him to the step-down unit, still hooked up to monitors, but I was able to sleep in the room with him that night so it was at least a little better.  On Thursday night, Dan sent me home to get some rest while he took the night shift.  The doctors again moved him that night to the pediatric ward so he had a bigger bed and Dan was able to sleep in the bed with him.  That night, Dan said Andy finally “woke up” from his coma.  I put in quotations because, while Andy was waking and sleeping for those three days, there was no life in his eyes.  Our son was not there.  There are no words to describe this.  It is only understandable if you have been through it yourself.  His body breathing, waking, eating and sleeping, but he was lifeless, almost catatonic.  The night he “woke up” Dan was overwhelmed.  He started laughing again and playing with Dan, reaching for him, touching him.  Our son was starting to live again!

We stayed in the hospital for two more days.  When the doctors were satisfied that Andy’s blood sugars were more stable and that we could handle it (whatever that means!), they discharged us on Saturday and we went home to live the life of a pancreas.  We were destined to be the pancreas for our son.  Or so we thought at the time.

Andy’s Story, Part I: Initial Diagnosis

After writing last night’s post and reflecting on the significance of Katie’s age today, I felt the need to write about some memories of Andy.  Today, Katie is 18 weeks and 1 day old.  This is the exact age that Andy was rushed to the Emergency Room at LeBohneur Children’s Hospital in Memphis, Tennessee.  That day will always stand out in my memory of him and will forever be tied to many different emotions that are as fresh today as they were at the moment I saw him lying on that huge bed in the ER engulfed by wires and machines.  He was so tiny, a mere 24 1/2 inches long and 10 pounds.  The only part of his body that had any substance to it was his stomach and even that was getting smaller.  Dan and I were looking at some pictures I found a few nights ago of Andy.  Looking at those pictures now, you can clearly see how sick he truly was, but at the time we didn’t notice because we saw him every day.  What amazes me is that the doctors didn’t see it either.

Andy seemed to be a normal baby when he was 3 months old.  He had a few rolls of fat on him and he nursed well.  He was a little fussy which we attributed to colick, but other than that, he was a happy baby.  We were living in an apartment at the time in Southaven, Mississippi so we took full advantage of the pool that summer.  I think this was before swimmers diapers were being made for little babies so we naturally just put him in the pool in a regular diaper and a onesie.  Now, anybody who has ever done this knows just how big a little diaper can get when saturated with pool water!  Then in August, just after I started back to school, we started noticing changes in Andy.  Things that in retrospect make so much sense, but in the middle of the crisis, we just did not put two and two together.

It started with what seemed like a cold at the end of the first week of August.  I chalked it up to him being new to daycare and possibly because he was passed around from one nurse to the next while I spent a night in the ER myself for what turned out to be kidney stones, ugh!  We, of course, took him to the pediatrician and he said it was just a virus and Andy would just have to get over it on his own.  I think that doctor may have said it was ok to give him some over-the-counter infant cold medicine.  For two weeks, Andy fought the cold and I kept bringing him back to the doctor because he just seemed to be getting worse instead of better.  On the 18th, Andy had his normal 4 month check up.  Now, because it is not recommended that pediatricians check kids at three months of age, the medical records show that Andy had not gained any weight from two months to four months.  I know that he had because I had weighed him on my own scale at home when he was 3 months old and he was 12 pounds 4 ounces on his 3 month birthday.  I remember, though I did not record it, that at the end of July, he was close to 13 pounds.  The doctor told me at his 4 month checkup  to start feeding him cereal and to increase the formula supplementation that we were already doing to help him gain weight.  Other than that, the doctor said he was in good health.  I think he may have prescribed an antibiotic because his cold had gotten a little worse at that time too.

One day that week, Dan came home and went to check on Andy and asked me if we had just gone to the pool because his diaper was so full.  I said no, but told him Andy had taken a long nap so that’s probably why it was so big.  That weekend, Dan’s two sisters and niece came to visit from New York.  We spent a lot of time playing and going to the pool, so it didn’t seem unusual that Andy was sleeping so much.  I just figured he was tired because he was worn out.  When Sunday rolled around, though, he took a turn for the worse.  That day, I remember vividly.  Andy wanted to nurse constantly.  I would offer him a breast and he would latch on and nurse for 30-45 minutes.  Then an hour later, he would be hungry again.  I did this all day until finally that afternoon, he wouldn’t even latch on.  I was in tears and called my mom who consoled me and said he was probably just tired from all of the attention he was getting from his aunts.

Monday, when I picked Andy up from the babysitter’s house, she mentioned she was concerned about his neck because he was not holding his head up anymore like he was able to do previously.  I immediately took him to the pediatrician who looked him over and diagnosed him with muscular torticolis.  I was beginning to get mad because the doctors kept telling me he was fine and I just knew something was wrong, but couldn’t put my finger on it.  In reality, Andy had lost all muscle control due to his body being in Diabetic Ketoacidosis (DKA) and his body was literally feeding on itself to try to get rid of the sugar in his blood stream.

Again, though, I put my trust in the doctors and went back to work on Tuesday and brought Andy to the babysitter’s again, with the explanation the doctor gave me.  Now, here is where the hand of God was wonderfully and amazingly obvious.  Kristen, Andy’s babysitter, became concerned when she couldn’t wake Andy up from his morning nap to eat.  She called her mother who was a former nurse and her mother advised her to call one of us to come pick him up or call 911 if she couldn’t get us.  Dan, who normally worked nearly 45 minutes away, had been working at the Memphis airport that day and due to the horrible high temperatures, he and his coworker decided to take off work early.  Just as Kristen had placed her hand on the phone to call Dan, the phone rang and Dan was calling to say he was coming to pick up Andy!

When he got to Kristen’s house, she voiced her concerns about his sleeping that morning and told him that Andy had not taken his bottle all morning either.  At this point, Andy’s breathing was very labored and his whole neck was straining with every breath.  Dan came to see me at school so he could get directions to the pediatrician’s office and a check to pay them since he didn’t have any money on him.  I remember seeing him in his car seat struggling with every breath.  The kids were changing classes and getting ready for lunch when he came so I just assumed he was coming for lunch, until I saw the worried look on his face.

Dan says that when he got to the office, the nurse took one look at Andy and rushed to get a doctor.  She told the doctor to “come right now” and when he didn’t move quickly enough, she sternly and adamantly demanded “RIGHT NOW!”  Immediately, they took Dan and Andy back to a room and called the ambulance.  I don’t know if it made a difference, but Dan says when he met the EMT’s and told them that he worked for Jimmy Jones, the chief’s brother-in-law, he felt like they began to work more quickly and rush even faster.  They tried to put him at ease on the very quick ride to the hospital.  Andy’s blood oxygen level was extremely low so they put him on oxygen in the ambulance.

Just after I sat down to lunch with my class of 5th graders, my assistant principal sat down next to me at the table and whispered in my ear.  She told me to try not to worry, but that they were rushing Andy to the ER at LeBohneur and she was going to have one of the Kindergarten assistants drive me there.  I must have gone back to my room to get my purse and some books to do lesson plans because I had them that night, but I was in such a daze until I got to the ER.

When I walked in, there were so many people surrounding the bed that I could barely see my tiny son.  He was lying on a normal sized hospital bed and there were wires attached to every part of his small, frail body.  I remember they did a chest X-ray and took a lot of blood, but other than that, I don’t really remember much.  There was a flurry of activity for the first hour and then there was silence for a while.  At one point, I was sitting in the room by myself with Andy (Dan had gone outside for some air and a cigarette) and a woman doctor walked into the room.  She tore a piece of paper off of a machine (what I assume was like a fax of some sort from the labs).  She started shaking her head as if in disbelief.  I asked her what was wrong.  She turned to me and said, “It doesn’t make sense. His blood sugar is extremely high and his pH is low.  But he’s too young!”  I can’t remember if she actually said diabetes or not, but I know I interpreted it that way because of the words “high blood sugar”.  Amazingly, the emotion I felt at that minute was not one of dread or disappointment, but satisfaction.  I was relieved to finally know what was wrong with my son.  After three weeks of doctors telling me he was fine and me insisting that something was wrong, I finally had a name to his condition, diabetes.

There is so much more to tell, but I feel like this post is so long already.  I will end here for now and pick up on this story in a later post.  Just know, this is not the end of his story.  There is so much more to tell.  So much I want to write about before I forget every emotion I went through at that time.  Please bear with me as I get this story out of my head and documented for others to see.  I feel like it is necessary to tell my story so others like my children can be identified and put on the proper medication.  There will be more to come, I promise.