The WAG King

“Did you bolus for that?”

“No its Christmas. I am not bolusing for Christmas. I decided that I need a vacation.”

“Funny…NOT. How much are you going to bolus for that? Do you even know how much you ate?”

“I am thinking that 60 sounds good. I like it. I think I will bolus 60.”

“Have you actually totaled what you ate to get to that number?”

“No. It just sounds good.”

At this point I mentally groan and begin to do the calculations….”You had potatoes, dressing, some carrot, a glass of milk, and then there was the pie.”

“Don’t count the pie. I just bolused the pie. The pie is covered.”

“Okay so your main meal.  That would be about 58g CHO.”

“See I told you 60!”

Darn, he still has it. He can still make a complete guess on a meal and manage to come within grams of what I would think the carb count for the meal would be.  The WAG King holds his throne for another day.

IMG_0090
No this wasn’t his 60 CHO meal honestly 🙂

Its not my disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.

Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.

I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.

As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.

With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!

When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.

We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  “Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.

I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.

stock-photo-comic-book-style-thud-55858537

A Rose Colored Life

I am slowly adjusting to not having any young men living in my house anymore. As I have said many times, it is a challenge for me on so many levels. I have found test strips in a few places and I can’t take it upon myself to pick them up.  They are physical reminders of my child. I actually smile when I see them.

IMG-20131203-00194
This one greets me in my laundry room each day.

Yesterday I realized how much we can romanticize situations when someone is away.  I am almost looking forward to getting up and testing my son through the night over Christmas. Gone is the dread and frustration that I carried for years.  Now, I will be doing him a favor–and more importantly I will have data to look at!!

Life can almost be rosy when they are away and you are simply talking on the phone or texting.  You can forget the challenges of trying to get a teen involved in his diabetes care.  You can gloss over the attitude that they can carry with them, the eye rolls and the shrugging of shoulders.  You don’t have to consider the fights over homework and grades.  There is a certain bliss about the situation…and then there are the challenges….

I am not there to force him to do homework and improve his grades. I cannot physically see the assignments that he should be paying more attention to but I do see the results in his report cards. I am not there to ensure that he is in the house at what I feel is a decent hour. I am not able to make sure that foods are bolused and testing is done.  This can lead to a sense of frustration and powerlessness. It can be torture….or I can go back to life with the rose-colored glasses fondly looking at dead test strips and remembering only the fondest of memories.

It is funny how the mind works.  I am at the point where I do both–I think of my son’s laughter and sense of humor. I wish that I could still do more about his diabetes care. I want to strangle him and kick his butt over his plummeting grades. I want to hook him up to a CGM and be done with it no matter what he says.

Such is the challenges of a child who is no longer small.  This is the way it is when he no longer lives in the same house, the same city, or the same part of the province.  This is how it is when he is struggling to be his own man.  It can be painful. It can be a learning experience for both of us. It is most certainly the greatest challenge of a parent.

The Importance of Learning

Time and time again, the importance of the Diabetes Online Community has been mentioned by myself and others.  It is an incredible place to share ideas, share accomplishments and troubles, and to simply learn no matter how long you have been at this game.

I wish my son was more involved but he remains one of the few teens in the industrial world who has minimal interest in technology and social networking. He has a FaceBook account that he reads on occasion. He almost never adds comments or posts a status. He will never send a tweet or a friends request.  He occasionally “meets” new people on his XBox but even that is minimal.  I have had friends in the DOC whose children have “friended” him but I do not hear of many conversations between them. That may change over time.  I can’t say. In the meantime, I continue to interact with friends and learn for the both of us.

The importance of continued learning struck me the other day. A good friend had asked a question about the best way to deal with a high protein meal.  She is well versed in diabetes care but was being troubled by how protein was creating havoc in the bg levels of one of her children.  With great interest, I read through the many comments and suggestions that she received.

I realized that we had had a similar issue with my son. If he had lobster for supper or a steak and salad, I was often at a loss as to the best way to proceed.  One person with diabetes stated that she didn’t bolus for protein but she would temporarily increase her basal rate.  That made a lot of sense to me and seemed relatively easy to try.

The next time that I spoke with my son I told him about this revelation.  He asked if it would work for a bacon and egg breakfast because he loves a good pan of bacon and eggs in the morning.  I said yes! The amount of added basal and the time to extend would be something that he would work out for himself but he really wasn’t adding a lot of insulin to his system at any given time.

He thought this was a great idea. I was impressed that he took the knowledge and was open to learning how to incorporate it into his own diabetes care.  He is being given a lot of information at the moment but I am proud to hear that he is also listening.  He has told me of some things that he thinks the educators are a bit out to lunch on.  I reminded him that this is his disease.  He needs to take in what they say, weigh it against what he knows about his own body and then go forward.  They may have great advice but it may not work for him. If he knows this in advance then its okay to say that it doesn’t work for him. If he hasn’t tried it, give it a shot, he just may learn something new!

Its a new road for both of us but I think we will make it one step at a time.

coblestones

 

 

A Doctor for Every Teen

A great doctor means everything in diabetes care.

Last week my son went to his first diabetes appointment without Mom.  As I said before, I had emailed the clinic. I had given them a heads up about a lot of things but I was not at the appointment. I was both surprised and impressed when a little while after the appointment I text my son, asked him how it went and he said “I will call you after.”  He was going to call and share the appointment with me? I was very pleased that he wanted to do this.

Later that evening we did talk. He told me that they had a lot to say, most of it he didn’t remember.  Again, my son is 16 and forgetting what adults say is a teen brain specialty. The nurse made a few changes.  His doctor commented on how much he had grown…and then his doctor talked, and talked, and talked to him for a full hour.  That was not unusual.  This doctor takes a lot of time with his patients and their families.  He gets to know you, shares with you and advises you.  He is wonderful.

My son was a little shocked by his high A1c (personally I was shocked that it wasn’t higher).  His doctor quickly told him that he didn’t care about that. It was just a number. (Yes you read that right! His DOCTOR said he wasn’t concerned about a high A1c!)  The doctor’s concern was with my son learning to handle HIS disease.  He wanted my child to know how to troubleshoot the issues himself.  He needed to know how much insulin to give himself, how to adjust a basal or bolus setting.  This was on him.  Now was his time to step up and learn.

I was beaming on the other end of the phone! This was what I had been aiming for as well but coming from his doctor was different from the “momma yammer”.  We do sit down and discuss strategies.  For the past few years, when making changes I would first ask him if he thought it was a bolus or basal issue.  He now had to develop the confidence to do it all on his own.  I was thrilled and reminded him that he was already doing a great job learning.

No one was suggesting that this complete transformation would happen overnight. This was his two-year plan and his doctor had told him that messing up and having a high A1c while he found his way was okay. This was a good reminder for Mom and a great message for my son.  Learn! Learn! and then when you have it figured out, go back and fix that A1c but for now learn about you, your body and your disease.

I still love this doctor and would gladly clone him for everyone else with diabetes to have as well.

d health

The Diabetes Game Show

Its been over two months since I have had to wake up and test a bg level.  It has been three weeks since I last asked “Did you test before you started eating?”  My brain seems not to care.

It doesn’t seem to realize that I no longer have to think about diabetes 24/7.  It does not realized that diabetes has moved a bit further back in my life.  It no longer shows itself in every move I make.  It moved away with my son and while I still worry and am involved in many aspects of his diabetes care, I do not have to be constantly on alert.  My brain seems to forget that.

A few weeks ago, I was on holidays.  This meant being able to sleep in and stay out late. I enjoyed some great entertainment and new sights. Despite the new experiences, there was also an old habit that reared its head…dreams of diabetes! I was in Las Vegas, so I guess my mind felt it only fitting to have me dream of gaming.

In my dream, I was part of a game show. I was not exactly a contestant but I was being asked my answers before they would say if the contestant was right or wrong. The questions were all related to guessing what someone’s blood glucose levels were based on how they felt.  I had to say if they were high or low but not just “high” or “low” but provide an exact reading of where I felt they were.  As if that was not enough of a challenge, my mind knew that I was in the US and demanded that I convert all bg levels into mg/dl!  I could not give a 2mmol reading but had to say that I thought the person was 36.

I have no idea what anyone won. I don’t know how long the game went on or what the ultimate goal was but I continued to provide readings based on experience with my son. I thought, calculated and gave my impressions…until I woke up!

I have had (and still have) those panic dreams of forgetting to do a night test. I have (and still have) nightmares about A1c results.  Dreaming of being part of a diabetes game show was definitely a first for me however!

diabetes game

Watching The Stumbles from a Distance

My son has been living with his father now for two full months. I still walk into his room and hope to find him there. I still find used test strips in strange locations. I still wake at night thinking that I should get up and test him but it is getting easier. I am slowly learning to adapt.

I keep in touch with both of my boys on a daily basis. I still worry about both of them.  I worry about the troubles that can find young men. I worry about many things that a parent will concern themselves with but I don’t obsess over any of it. I focus on how strong and independent they are. I pray that they always remember that I always want the very best for them.

My youngest son has been great about uploading his pump and touching base with me once a week to discuss his readings.  I have worked very hard never to freak out at the lack of testing. I don’t scream at him when I see high readings.  I normally just ask for more data. We discuss how different meters are functioning and talk about how to handle bad sites.

Stepping back and letting him make the decisions is very difficult.  It’s not because I am a control freak (although that has had its challenges), it’s because I am a Mom.  I want to protect my children from all ills. I failed him once by allowing him to get this disease. It has therefore been my job to protect him from the ravages of it.  That’s how a parent thinks.

Yesterday my son and I talked about his readings.  Once again I did not scream. I did not cry–but boy did I want to! I looked at the very few readings (maybe two per day) and saw none of them in range.  All readings were incredibly high (a low reading was 14 mmol or 252 mgdl).  My mind’s eye saw nothing but kidneys breaking down and eyes being damaged.  I quickly reined in my imagination and remembered the concept of metabolic memory.  I had prepared for this day.  I had kept him in excellent control his entire life.  The theory was that it would protect him through this time as he stumbled and found his own stride.

Instead of showing my obvious distress, I reminded my son that he felt bad when he was high. I asked him a few questions about his readings–“how long before you tested did you eat? So you were probably high for at least four hours previous.”  I then set to work. I was nervous about making sweeping changes with so little data but I had to do something! I upped his rates almost across the board.  I suggested that he might want to try to test a bit more so we could get a better idea of where we stand and help him to feel more like himself. I left it there.

This would have to be his decision. He had to decide to look after himself and make testing a priority again.  We had met for dinner a month ago when I was near the town that he now lives in.  I watched as he began to eat without testing. When I questioned him, he quickly took out the pump remote, tested and stated that he had forgotten because he was just so hungry.  Perhaps that was the case but the data I have been seeing suggests that he just often doesn’t bother to take the time to test most of the time.  He remembers to bolus however so I will be grateful for the things he does do.

I praised him for giving me the truth about high numbers. He was not using the pump remote for most readings so he could easily have lied about the 20 and 30s (360-540+) that I was seeing on his upload.  I said that it was great that he was showing me these.  We would work together to bring the readings more in range.

I have no illusions that things will change after this latest talk.  We had a similar one a few weeks ago.  That reality is what sets me on the edge of tears.  He will see his diabetes team next week. I pray that they will help him see sense but again, I doubt it. He is 16.  He knows best. He will have to learn on his own.  One day he will hopefully realize that I was trying to keep him healthy.

I have spent the past 13.5 years teaching him how to take care of himself. He has the tools.  Watching him not use them is heart-wrenching.  Many adults with diabetes and parents with older children tell me that this will pass. One day he will remember all that he was taught and will get himself back on track.  I do believe that–I have to.  The hard part is waiting for that to happen and in the meantime standing on the side lines watching, guiding, and praying that the scrapes are no more than that.

My son is a good kid–both of my children are.  They have never brought any trouble to my door. They have never been involved in any serious and dangerous behaviors that I know of.  They have always been quite respectful of me and as I said, all around great children.  Diabetes just adds that extra layer. It’s like that best friend that you really don’t want your kids to hang around with but they think he is the best thing going.  You know the dangers that he can cause for your child and they think that they have him under control.  Daily you pray that they are right…but it is terribly difficult.

I will continue to monitor my son’s longtime friend called diabetes. I will work to prevent as many scrapes as I can. I will be on the sidelines encouraging him to find his own stride and remembering that no matter what I have done in the past, this is his disease to learn to manage.

Liam Oct 1998

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.

I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.

I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.

When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange….and then I talked to my youngest son.

After a bit of chatter, I asked him how his readings were.  “Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day.” BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.

I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often “knew“.  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn’t have a higher level of anxiety attached.  As long as my son is also waking and dealing with things…well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don’t, I will text! psychic 

Changing of Roles

Today is the first day of school.  My son is starting grade 11 in a new school.

For the first time since he has been in school, I will not be sending a diabetes information package to school. I will not be emailing each teacher and giving them a heads up on what to expect. This year, my son has decided that he needs to take charge of his life and his diabetes care.

I am nervous…this is a step up from the pure terror that racked my body when he first told me of his decision.

This school is not unfamiliar with diabetes.  They had a student a few years prior who had diabetes as well.  The community knows of his condition so it will not be something new for his fellow classmates.

I will not however, be going in and asking that they know about Glucagon or finding a person who will be trained to use it. I will not be taking each teacher aside and drilling into them as much information as possible.  I will not be sending my usual package of information.  This is all for my son to share. It is up to him what he says or does not say.

I am confident that my son “can” take care of himself.  I have been training him for years.  He has shown in the past that he can’t always be bothered to do this but he swears that a magic wand has been waved over him and he has changed. I don’t believe this but I have to let him try no matter what. This is the hardest part of being a parent. Its like watching them learn to walk all over again but this time you can’t pad the furniture and make sure that they land on carpet.  You can only watch, pray, and hope for the best.

I will contact the school and remind them of my contact information. I will tell them that if they have any further questions about anything including diabetes that I am available.  That will be where it starts and ends.

Young adulthood arrived in our lives sooner than expected.  Its now time to adjust to the new roles and be there when I am needed only.This is going to be a tough road! first steps

Preparing for a new school year with diabetes

a new school year with diabetes

It’s that time of year again, the time that many parents look forward to and most parents of children with diabetes both anticipate and dread—Back To School!

For a parent, this is a time when we look forward to the return to routine, early mornings and school lunches.  We stare in shock at the number of clothes that no longer fit our offspring and cringe at the many new outfits and shoes that they require for the new school year.

As parents of children with diabetes, we also begin to worry—will our children with diabetes be safe at school? Will our schools allow testing and injecting in the classroom? Will our children’s teachers understand the very real cognitive impairment that comes with highs and lows? Will someone use glucagon on our child if it is needed? Will our older children test and bolus around their peers? And the list of fears go on and on.

To help alleviate some of those fears, I asked parents to give me their top tips for preparing for a new school year with diabetes.  Here are a few things that we think are important to remember.

Keep calm and be strong!  

You are your child’s advocate.  You are your child’s protector but remember that most educators also love children.  They know how important your child is and will do as much as they can to help you and your child to feel safe in the classroom.

Before the new school year begins, arrange to meet with staff to discuss what they can expect when they have a child with diabetes in their school.  While your child may not be their first child with diabetes, each child’s care needs are different. It is important that they understand your child’s individual treatment plan.

At this meeting you will work together to establish roles.  Carefully outline what do you expect from the teacher and the support staff. Make sure that they understand what they can expect from you.  Finally,  ensure that everyone knows what tasks your child can do on their own.

You also want to establish a method of communication. The school  should understand that they can contact you and that you would like to be able to stay in touch with them.  Working together will make the year go smoother for everyone.

Do not go into meetings in attack mode. Remember to be calm, rational and offer credible arguments to any opposition to your requests. Often your school personnel know little or nothing about diabetes care.  Remember that you once were probably just as ignorant so be patient, educate and be willing to make compromises where it is reasonable.  You also have every right to stand your ground when the alternative will put your child in harm’s way.

Empower your child. 

You cannot go to school every day with your child. (I tried once but the teacher kicked me out) It is therefore important that your child be aware of his/her rights and their responsibilities when it comes to diabetes care.

Ensure that your child knows what to do when a teacher impedes them looking after themselves (stops them from finishing their lunch, using the washroom when high, or having access to water for example).  If your child is responsible enough, he/she may carry their supplies with them at all times so that they have access to them in all classrooms and in the event of a lock-down.

Create and present a diabetes care plan or 504 plan for your child. 

If you live in the United States and your child attends a publicly funded school, it is important that you put in place a 504 Plan which outlines the roles and responsibilities of the parents, student, and school. Sample plans can be found at www.childrenwithdiabetes.com as well as the ADA website, www.diabetes.org

If you live in a country (like Canada), without such laws to protect your child with diabetes in school, you may still create a care plan.  Often school boards will have their own plans that you can fill out or you can work with many online templates to create your own.

In either case, it is important that you outline the level of care required for your child, the accommodations that need to be made during exams for high or low bg levels, missed school because of diabetes related appointments, how to handle parties or events at school, what to do about school field trips, after school sports activities and more.  This document should note what is expected from the parents (ie. They will ensure that there are adequate supplies in the classroom), the student (ie. he/she will test before exams), and the teacher (ie.  The student will be supervised when low until back in range)

Educate, Educate, and provide information. 

Take the time to set up a meeting with all staff who will be interacting with your child.  Ensure that they know what diabetes is as well as the signs and symptoms of highs and lows in your child.

Share a detailed booklet of diabetes care information for your child’s homeroom teacher.  Provide information on your child’s testing and injecting schedule, general information on the insulin pump and errors that could occur if your child is pumping, ensure that your emergency contact information is highlighted and easily available. Make sure that everyone is aware of policies on eating in the classroom or on the bus as well as whether the school will have someone trained to administer glucagon in an emergency situation.

Provide posters or flash cards that can be placed in the staff room as well as the classroom noting the signs and symptoms of highs and lows.  You may also wish a picture of your child posted in the staff room so that all staff are aware of your child and will not rush them out of a lunchroom or penalize them for being in a hall to get water when high.

Finally, if your child is willing, go into the classroom and present information to the students on diabetes and diabetes care. Knowledge is power.  When children learn to understand the realities of diabetes, they are often your best source of support for your child when you are away from them.

Be a Teacher’s Pet! 

If you have the ability, volunteer with your child’s school.  Make yourself and your child visible to the staff. Help out at events or volunteer to chaperone field trips.  This can allow the staff to better know you and understand your concerns.  This can also help you to come to know the staff and feel safer about leaving your child when you aren’t around.

If you are not able to be at the school, reward good behavior! Remember to thank your child’s teacher for a job well done.  Provide thoughtful gifts at Christmas and year end to let them know you appreciate all they do when you are not around.

Don’t forget your supplies

A new school year is the perfect time to stock up on your diabetes supplies for school. Make sure that you have a comprehensive list of supplies to send to school with your child as well as a system in place for refilling items as they are used. An emergency red box may be placed in the classroom with low supplies, syringes, spare test strips and batteries.  Depending on your child’s age, supplies may be left in other rooms, at the office or carried by the child.

Download our free list of some of the items that you might want to include when preparing for a new school.

Send notes. 

Make sure that you keep an open line of communication between yourself and your child’s teacher(s).  This can be done through emails or notes left in the child’s daily school planner.

Attach sticky notes to your child’s food noting the carb counts or exchanges on each item. This can help to ensure proper insulin to carbohydrate/food dosing for children of all ages.

Managing gym class. 

Physical activity is important for everyone but it is especially important for people living with diabetes.  It is important for gym teachers to know that diabetes should not stop our children from taking part in events.  Your child should know to test before he/she starts any physical activity. Make sure that everyone knows the range that it is safe for your child to exercise in.  If your child is on a pump, you may wish to set a special “gym day” profile to reduce basal rates or perhaps you simply want to give the child 10 grams of carbohydrates before class to help them maintain their bg level during activity.

Relax and enjoy the new school year

My final tip is the most important…Relax and have fun! Make the year fun! Your child is a child first.  Plan ahead with staff regarding things like parties, extracurricular activities, outings and exams so that your child gets the most out of their school year.

School should be a time of fun, education, and friendships.  Diabetes can sometimes interfere and make things a challenge but do not let it stand in your way.  Help them to learn to live with diabetes in the most positive way. 

For a guide to care policies in many Canadian schools please check out this link.

If you have a tip that I missed, please let me know!