Category Archives: diabetes diagnosis

3 Tips for Parents of newly diagnosed Children with Diabetes

I was recently asked what advice I would give a parent of a child newly diagnosed with Type 1 Diabetes. It has been a number of years since I fell into that category but I can sadly remember it all like it was yesterday.  That being said, it was an easy question to answer and comes in the form of three pieces of advice.
 
First and foremost, live your life four hours at a time.  Do not worry about six hours from now. Do not worry about tomorrow.  Live life in four hour time slots–nothing more.
 
Chances are high that your child is using a rapid acting insulin. They basically last four hours.  Look at readings inside the four hour window.  Look at food and activity in that four hour period.  If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously! If you see something out of range during that four hours then begin to problem solve.  What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates? Did you learn that hockey practice before supper changes the amount of food and insulin your child needs?
 
Four hours. Its simple. Its manageable…and for an overloaded parental mind, really it is more than enough to handle.
 
My second piece of advice is to find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help! Share with them, unload on them, and again…use them.  Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour.  You deserve the break.  You cannot be the very best external pancreas that you can be without a break and an outlet.  Its okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way.  Its okay to do this.
 
Finally, cry in the shower.  Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while.  Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. Allow yourself to feel the anger and hurt.  Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.
 
You can do this.  There will be bumps.  There will be victories.  The landscape of your life, and that of your child, has changed forever.  This doesn’t mean that he/she will never achieve their dreams or live a long and full life.  It means that your perspective will shift a little (or maybe a lot). You will find new friendships that will bring you through the worst of times and celebrate with you in the best of times.  Life will be different but it can still be amazing…just four hours at a time.
crying in shower

I don’t remember…revisited

Here is another of my more popular posts. It came about after a conversation about my son’s diabetes diagnosis….

Today was that day we all dread…the diabetes clinic day.  It started badly. We circled the hospital parking lot forever waiting and waiting for a spot to become vacant. My son rode shotgun and called out “Over there! There’s a truck…too late.  Follow that little old lady, she’s…nope someone got there first.” This was our morning for close to 45 minutes. We were late for our appointment.

I was only mildly concerned because, like all good doctor’s offices, I knew that this one would also be running behind.  I was right. The time spent looking for a parking spot was the time we otherwise would have spent sitting in the waiting room.

Relatively quickly, we were ushered into a room and waited for our numerous visitors.  The first person to come in and chat wanted to know how things were going at school.  Did we have any issues? Did we need her to call the school? No, we were doing alright there. The issues I had at school were not anything that would be fixed by a phone call. I needed my son to be a little more visible with his diabetes and be less self-conscious about testing. No one could fix that but us.

I was surprised to see my son’s doctor arrive next.  I have been lucky to have had great doctors for my son since his diagnosis. She asked him how he was doing, asked about any illnesses and then turned to me for basal rates.  She looked at his age and asked him how long he had had diabetes for.  My son was stuck.

He looked back at her with a blank expression. I could tell that he was thinking, “What do you mean? I have always had diabetes. I can’t remember when I was diagnosed. I can’t remember my life before.” Instead he just said “I don’t know.”

I piped up and said that it would be twelve years on Saturday.  She smiled and said that Mom never forgets.  How right she was. 

Ironically, on our drive to the hospital that morning, the conversation of my son’s diagnosis came up.  He asked a few questions and I told him that he had escaped Death’s grasp those many years ago.  He was rather silent and then said, “I am glad that I don’t remember any of that.” 

I smiled. I wish he remembered life before needles and testing. I wished he remembered a time when it hurt to lance his fingers–he told the nurse today that he no longer feels these things.  I hope for a tomorrow when he can look back and say “I used to have diabetes.”  For now, I just remember how far we have come and continue to grateful every day that my small little boy didn’t answer the door when Death came knocking almost twelve years ago.

A new door opened

She had been alone for well over a year now.  Her family was on the other side of the country.  Friends were great but she still felt terribly alone. No one truly knew what her life was now like.  She had a toddler with Type 1 diabetes.

Before March of the previous year, she didn’t even know that there were different “types” of diabetes.  She didn’t know that diabetes could kill you let alone almost kill one of her children.  She was no longer so innocent. She was still scared and she felt terribly alone.

Diabetes had caused her to make many changes in her life.  She had bought a cell phone–just in case.  The family had bought a more reliable car for the many trips back and forth to appointments.  Meals were now very structured and their lives were on a timetable–something she had avoided before. 

She had done other new things.  She had braved her fear of the phone and called a total stranger for support.  The woman had been amazing. Her own daughter was a year younger than this woman’s son and diagnosed the month before.  They were both struggling along the same path. Despite living in different towns, over the years they would develop an amazing bond. 

The other huge thing that she did was join the world of the Internet.  Her mother had been pestering her.  “Get online! It would be so much easier to talk to you.  We can use MSN.  It will be great. Just go to your phone company and have them  set you up.” Finally she did just that.

The family computer had been used for Reader Rabbit games but now it was going to be Mommy’s toy.  She truly had no idea as to what she was getting herself into but she did as her mother suggested.  She got an email account. She opened a hotmail account to talk to her mother and sister.  She then began to search.  There had to be other people out there like her.  There had to be other parents of children with diabetes but how would she find them?

After a day of searching and stumbling, she was sure that she would never find anyone else.  She knew enough to know that people were diagnosed with diabetes all the time but finding someone who understood her life as it was now? She was giving up hope. Perhaps the search was futile.

Ironically she finally decided to search for something very simple “parents of children with diabetes.”  She found an email list.  It said that there was high volume of mail so she used her new hotmail account and joined the list. She had no idea what “high volume” meant but she was taking no chances of messing up her normal email account. 

She wasted no time. She was at her wits end trying to dealing with diabetes and her now three year old son.  She immediately sent a message to the group…”how do you get a 3 year old to eat? He throws up. He refuses to eat.  I just cannot get him to eat and yet he has to have his insulin.  He cries. I cry.  What can I do?”

Within minutes she had an answer.  She cried.  It had been so simple…to get advice and to solve the problem. She had known the answer all along but for some reason when a woman named Sharon and a woman named Vikki came back with the answer it made sense where it never had before. Suddenly she was not alone.

She now had a community to learn from.  There were hundreds of people who had been there and done that.  There were people who were at the same stage as her.  There were people who had been doing this for years.  There were people to help her along and there were people to give her a shove when she needed it. 

She had family.  She had friends but suddenly at the end of her computer was a new world.  A world that contained another family.  A world that held people who truly would become her friends for life.  They changed her life.  They supported her and they helped her grow beyond anything she ever imagined.

But I will never forget…

As we drove down the street my son turned to me and said, “You knew that I had diabetes when I took a face cloth to my tongue, right?”

I told him that he had wiped his tongue with a dirty sock and then recounted the rest of his diagnosis story.  He told me that he was glad he didn’t remember…I will never forget…

It was March. He had not been feeling well. He was two years old and wanted to do nothing but sleep and lay in my arms.  He was going through diapers faster than I could put them on him.Everything we owned was soaked with urine.  We had been to the doctor once…when he began to wipe the white spots off of his tongue with a dirty sock.   They said it was nothing serious–an ear infection and white mouth. 

When things didn’t get better, I made an appointment with our family doctor. I stopped at the drug store before the appointment to pick up baby food. He was eating nothing, I hope the nutrients from baby food would help him until he got over whatever it was that he had. 

We sat in a full waiting room waiting for the doctor to return from lunch.  The people with appointments before us told the receptionists to take my son first.  He needed to see the doctor right away.  They could wait.

I took him into the examining room and told the receptionist that his feet were so cold. I had wool socks on him and he still could not warm up. He was asleep in my arms. His breathing was raspy.  She looked worried.

It was not too long before the doctor arrived. He had known me since I was pregnant with my first son. He had been both my children’s doctor since they came home from the hospital.  He had a very concerned look on his face when he examined my son. I explained what the Emergency Room doctor had told us a few days before–that he had an ear infection but he wasn’t getting any better.  He looked at me concerned and said “My love, I could be wrong, but I think he has diabetes.  He is in ketoacidosis.  He could have a chest infection but I need you to go to the hospital right away for emergency blood work and a chest x-ray.  While you are gone I will get in touch with the other hospital and get things organized for you.”

I really had no idea as to what his words meant. I heard “diabetes”,  “ketoacidosis but could be a chest infection.”  It was no big deal. I had healthy children.  He had a chest infection because little babies do not get diabetes and I didn’t know what that keto…something or other even meant.  He was fine. It was an infection. We would get an x-ray and they would give us something to fix it. No worries. 

At the hospital we were met with the same fast service as we had seen in the doctor’s office.  My son did not stir when they took his blood.  I had to hold him up for them to do a chest x-ray.  People still gave me concerned looks but I remained insulated.  My child would be okay. They were wrong to be concerned.

We went back to the doctor’s office to wait for the results of the testing.  I sat in a different spot this time. I was now directly across a poster that advertised the signs and symptoms of diabetes.  “Frequent urinating, blurred vision, fruity breath, thirsty…” The list continued and I realized that my son had so many of these symptoms that diabetes could not be ignored as a diagnosis.  His breathing continued to be shallow and he continued to sleep. Worry began to creep into my conscious.  This was not just a chest infection.

The doctor called me into his office.  He said he had arranged for the very best care for my son in the next city.  We needed to drive there now.  They were waiting for us. My son had ketoacidosis.  It was vital that we get there now.

We packed up my boys and began the forty-five minute drive to the hospital.  Later, my son’s father would tell people that it was a blinding snow storm and he struggled to get us there safely.  I honestly don’t remember the drive.  I focused my attention only on the lifeless little body in my arms.  I didn’t dare put him in his car seat. I held him the entire way.  I prayed like I had never prayed before. I willed my life to go into his body.  He could not die. Nothing could happen to my child. I had lost a child before him in a miscarriage. I would not lose one of my precious little boys.  I would die first. 

We arrived at the hospital and I was dropped off at the door while my son’s father looked for a place to park.  The lady at the reception desk seemed to take forever to fill out the required paperwork. I worried that she was stealing minutes of life that my son didn’t have.  I knew she had to do her job but I was now terrified.  She must have sensed how scared I was because when she was done, she personally took me to the ward where the nurses were waiting for us.

They took my two year old son and tried to weigh him.  He was too weak to stand on anything so they put him on a baby scale. He weighed 11kg.  How was that possible? How could he be so tiny? I was shocked and more terrified than ever.  They hooked him up to monitors and waited for the doctor to arrive.  There was a snow storm on and was not in the hospital yet.

It didn’t take long for the man who would save my son’s life to arrive.  I was shocked to see this man who looked more like a lumberjack than a doctor walk through the door. His hair was messed. His beard was big and bushy.  He wore a plaid shirt and big winter boots. He looked at my son and order him into the Intensive Care Unit. Things quickly went from bad to worse. 

My son’s bed was taken from the pediatric floor to the ICU ward.  We were surrounded by older people who were dying. My son was a baby.  He could not be here. This was wrong.  They made me leave the room as they began to run tubes and IVs throughout his body.  Finally the doctor came out to talk to us. 

He said that my son had diabetes.  His blood sugar was at least seven times what it should be.  He did not know how much damage had been done. They would give him small amounts of insulin over the next twenty-four hours and see if he responded. There was a real danger of stroke, heart attack or prolonged kidney damage.  If he lived for the next twelve hours then we would begin to look at the future but first we had to get through the night.

I was stunned. I couldn’t breathe.  I went to call family.  All I could say was to pray.  I told them that we had to wait twelve hours. I asked my mom to call the rest of my family. I couldn’t do it.  Family that lived close to us had already called our family doctor and knew that things were not good. I then sat and cried but I couldn’t cry for long. I had to be strong. I had to give my strength to my son. (I would not cry until months after but when I did…well that’s another post)

That night I slept at his bedside.  His father and brother spent the night on the couch in a nearby room.  We all prayed and waited.  The next morning my son stirred for the first time in too long.  He tried to pull out the many tubes running from all over his body.  He was back! He was going to be okay. I knew he was. Nothing else mattered.

He was eventually moved back to the pediatric ward.  We would spend two weeks learning about diabetes care and curing the chest infection that he did have.  I knew that life would be trying but he was alive.  That was all that mattered–he was alive.

That was twelve years ago today and yet the memories and the emotions are just as raw as if it happened yesterday.  My son does not remember…but I will never forget.  I thank God each day that my son is alive.  He may have diabetes but he is still alive to live his life to the fullest each day.  

I Don’t Know.

Today was that day we all dread…the diabetes clinic day.  It started badly. We circled the hospital parking lot forever waiting and waiting for a spot to become vacant. My son rode shotgun and called out “Over there! There’s a truck…too late.  Follow that little old lady, she’s…nope someone got there first.” This was our morning for close to 45 minutes. We were late for our appointment.

I was only mildly concerned because, like all good doctor’s offices, I knew that this one would also be running behind.  I was right. The time spent looking for a parking spot was the time we otherwise would have spent sitting in the waiting room.

Relatively quickly, we were ushered into a room and waited for our numerous visitors.  The first person to come in and chat wanted to know how things were going at school.  Did we have any issues? Did we need her to call the school? No, we were doing alright there. The issues I had at school were not anything that would be fixed by a phone call. I needed my son to be a little more visible with his diabetes and be less self-conscious about testing. No one could fix that but us.

I was surprised to see my son’s doctor arrive next.  I have been lucky to have had great doctors for my son since his diagnosis. She asked him how he was doing, asked about any illnesses and then turned to me for basal rates.  She looked at his age and asked him how long he had had diabetes for.  My son was stuck.

He looked back at her with a blank expression. I could tell that he was thinking, “What do you mean? I have always had diabetes. I can’t remember when I was diagnosed. I can’t remember my life before.” Instead he just said “I don’t know.”

I piped up and said that it would be twelve years on Saturday.  She smiled and said that Mom never forgets.  How right she was. 

Ironically, on our drive to the hospital that morning, the conversation of my son’s diagnosis came up.  He asked a few questions and I told him that he had escaped Death’s grasp those many years ago.  He was rather silent and then said, “I am glad that I don’t remember any of that.” 

I smiled. I wish he remembered life before needles and testing. I wished he remembered a time when it hurt to lance his fingers–he told the nurse today that he no longer feels these things.  I hope for a tomorrow when he can look back and say “I used to have diabetes.”  For now, I just remember how far we have come and continue to grateful every day that my small little boy didn’t answer the door when Death came knocking almost twelve years ago.

It Slipped My Mind

Today, as I stood in the bathroom preparing for the day by applying make up in hopes of erasing those fine lines, I realized something.  This was the month of March.  Today was the 5th of March.  The anniversary of my son’s diagnosis with Type 1 diabetes will occur in 12 days.

Since Diabetes barged its way into our lives, March has always come in with a dark cloud.  It would be lurking overhead no matter which way I turned. I would do my best to look at it in a positive light. I would “celebrate” how far we had come. I would count the wonderful friendships and experiences that it had brought into our lives.  I would remember. I would look back.  I would relive each detail of diagnosis again and again throughout the month.

This year, I have looked at St. Patricks’ Day with my same dismay. Its not a day that I feel is filled with luck although we were lucky to save my son.  Its a day of reflection but its a day , this year at least, that has seemed to be a long ways off.

I have been worried about getting my oldest son’s birthday present purchased and in the mail so that he has it in time for his birthday at the end of the month.  I have wondered how 18 years could have gone by so fast. Diabetes was not a thought. 

I have focused on really trying to get the new, error free, neat, clean, and easier to use web site up and running. For months I have fought with code and lost data but am now more determined than ever to get the newest version of www.diabetesadvocacy.com up and running this month.

I know that as the 17th comes closer I will reflect. I know that I will relive every moment of that dreaded day.  I know that my blog post for that day will look back to that day but for the first time in years, it has started to fade. It is not on my mind all month. Yes, it was a day that changed my life and the life of my family but its not as all consuming of a day as it once was.

I talk about my son taking baby steps forward in his care.  Perhaps, after 12 years, his mother is finally taking baby steps towards healing as well.

A matter of perspective

Yesterday a friend had posted that it was the anniversary of one of the worst days of their life.  It was the anniversary of their son’s diagnosis with diabetes.  Yesterday I also watched as candles were lit all over the diabetes online community.  More children were dying because of this disease. 

My mind thought back to  the day of my own son’s diagnosis.  Was it the worst day of my life? Was it one of the worst days of my life? My answer was no.  That surprised me. How could something so devastating, a time period that was so terrifying not be ranked as one of the worst days of your life?

Simple…my son is alive.  The day my son was diagnosed is firmly etched in my mind. I can relive almost the entire day in exquisite detail.  I never forget March 17, 2000 and each March I silently countdown until that fateful day but it still is a day that I remain grateful for. 

That day, so many years ago, my son was a lifeless bundle.  His body was cold.  His breathing was laboured.  With each intake of breath, I prayed he would live to take one more.  All I wanted was my son to live. He was only two. He had so much more living to do. I wanted him to grow to have his own children. I wanted him to bury me not the other way around.

My prayers were answered.  My son was alive.  He is now a charming teenager.  He is tall, smart and handsome.  He also has diabetes.  That brings its challenges but we are both here to meet them. 

March 17, 2000 was not the worst day in my life.  Had I had to live through the pain that the families of Emily Mak and others are facing, in having to bury their children then it definitely would have been the worst day of my life. That day remains etched in my mind. Our world changed forever. Nothing has ever been the same.  My son is still with us though and together we work to keep him healthy and safe.  In the grand scheme of things, its a day to celebrate because its the day Diabetes did NOT win and my baby is here as proof.  I pray we all have a lot more of those days.

Dr. Diabetes Diagnosis the cat

“Mom, the cat has diabetes.” That was the text message I received the other day. My youngest son is still visiting with his father and he decided that their cat has diabetes. 

How do you know?
“She is losing weight, not eating and drinking a lot”

He could be onto something.
Has anyone taken her to a vet? Did you test her?
“I will call you in a bit and you can tell me how to test her.”

While I waited, I sent a text asking my oldest son (and owner of the cat) if she had diabetes. He said no. 

Later that evening, my youngest son called for instructions on how to test a cat’s blood glucose levels. 

What makes you think she has diabetes?
“Like I said, she is drinking a lot and is losing weight.  She was overweight so maybe she has Type 2. I should be a doctor! I should clean the lancet after I test her right? I guess I should just change it, huh?”

Yes, I told him that he should definitely change the lancet. I said that I didn’t think that she would lose weight with Type 2 but I wasn’t a doctor or a vet. The cat is old and perhaps there was something else going on but I told him that his diabetes diagnosis could be spot on.

After a bit more conversation, he was off to chase the cat.  She apparently was not keen on waiting around for someone to lance her ear. As I hung up I had to laugh, I always thought it was just parents of children with diabetes who saw a new diagnosis in every baggy shirt. I guess if you live with the disease, you can be pretty alert to these things too. We still have no firm diagnosis on the cat.  He told me today that no one will volunteer to hold her while he tries for blood. I hope his diagnosis is wrong but I guess time will tell!

Another diagnosis

Last week I was contacted by my son’s school.  They had a child in school who was recently diagnosed with Type 1 diabetes.  The principal wanted to know if they could share both the information that I had given them on schools and diabetes with the parents, as well as share my personal information with them. I said of course!

My heart broke that one more family was having to go through this.  I ached for the young child (in the primary grades was all I was told) who had to  learn how to lance his small fingers and inject his little body parts multiple times each day.

I asked my son if he had been in contact with this child.  My son is not big on children smaller than him.  They are strange creatures who remain completely foreign to him.  He does his best not to socialize with many of them so it was not surprising when he said he had no clue as to who the child could be and had not spoken to anyone.

I suggested that he try to find the kid.  I told him to ask a teacher to point the child out to him. He could go up to the little guy and tell him that he had diabetes too. He said that no one in school knows he has diabetes (big Mommy groan!).  He said if he walked up to some kid, showed him the marks on his hands from lancing them multiple times each day and showed him his pump the kid would probably go screaming in the opposite direction.  He figured going up to him would terrify the child more than diabetes itself!

For my son, being 5,6 or even 7 and having diabetes was no big deal.  It was not a source of stress. It was part of life. I couldn’t seem to make him understand why it could be a little scary for a child who had lived a “normal” life up until this point and now was beginning his life with diabetes.  The entire concept was simply out of his point of reference. Diabetes, testing, blood, injections, pumps, that was all he could remember.  It was annoying but it was his life.  I found that rather sad.

Despite my best efforts, my son will continue to remain secretive about his disease.  It is his disease however and teaching him to look after himself when I am not around is more important to me than him educating or interacting with others with the disease.  I will continue to speak for both of us.  I will send the principal a link to the upcoming FFL Canada conference in case the parents are looking for some support this summer and I will learn to live with my son’s indifference which may not always be a bad thing.

A Good Age for Diagnosis?

It teaches me to wander into forums and read things when I should be focused on the stack of work I have for myself on my desk…

I was reading about a child diagnosed at age two and the parents were asking for tips and help.  The entire situation was overwhelming and despite logically knowing that injections and testing were keeping their child alive, everyone was in tears during the process. One well-meaning parent, who also had a young child who had been diagnosed at two as well, stated that they should be thankful that this was the only life their child would ever know.  They went on to say that the parents could spend the little one’s childhood properly preparing them for their adult, independent years. 

I can fully understand what they are saying. I can see the logic, but like the family who cried at every injection, my heart screamed when I read this.  There is no good age for anyone to develop diabetes.  There is no good thing about my son being diagnosed when he was two and not knowing what it is like to simply put food in his mouth without thinking blood glucose level, insulin and carb counts. There is nothing good about the number of injection marks all over his young body.  There is nothing good about fighting puberty and diabetes at the same time. 
There is nothing good about worrying about a seizure in a toddler because of a low that he/she cannot yet feel.  There is nothing good about a child growing up knowing that Mom will be with him at almost all events because no one else will learn to care for him.
There have been benefits.  I have made friends that have stood by me for years.  He has had the opportunity to travel and meet some incredible people as well.  Would I trade that for him to be diabetes free? In a heart beat! As much as I love my friends, I hate diabetes and wish we had all been able to meet under much better circumstances.
I decided to see if I was alone in this feeling and asked a group of parents what they thought.  Most parents felt that it really depended on the child.  They felt that while one of their children copes fine with the disease (having been diagnosed young), another would be a nightmare if they got it now in their teen years.  Other parents decided to pose the question to their children and again we found mixed answers.  Some were happy with the age they were diagnosed (okay they would prefer to never have gotten diabetes but you know what I mean), others felt that an older age would be much better.  Just as some adults had pointed out, these children felt that if they were older when diagnosed they would be better able to understand what was going on with their bodies.
So the verdict? What is the best age for diagnosis of Type 1 diabetes? 200 years old was my personal favorite!