If you have found this blog, saying Welcome does not really seem appropriate. I know you wish you weren't surfing the internet for diabetes. I felt the same.
A big part of me wishes I were not writing about diabetes, nor did I anticipate to become so opinionated or informed on the subject, but it happened. In 2010, my son was diagnosed with Type 1 Diabetes.
It wasn't really part of the plan… Correction - it was not part of the plan, but it happened. It is not always easy, but I think we are all doing okay, and I hope we continue to do so.
Why the Middle East? I happen to live in Dubai. I don't think that living in the Middle East makes mine or my son's diabetic experience any more unique or challenging than it does elsewhere in the developed world.
I hope you stick around, or read something you like. Feel free to comment and join the conversation, subscribe or follow this blog by liking the Facebook page Diapoint.
Please note: This blog does not give medical advice. I am opinionated, and I share my experiences, but the first rule of diabetes is to follow up with your doctor and/or nurse educator about your care, diagnosis or medication. If you do not have a medical practitioner that is helping you find your way through this crazy world, then do not give up until you find the right one.
Tuesday, December 30, 2014
As I was searching for new recipes, I came across a a beautiful website promoting a healthy lifestyle. The woman promoting this and her products claims she cured herself from cancer by just food. However, reading the bio, it sounded like she still did a full course of chemo, but I wasn't there so I'm not judging.
I did see an advertisement for a video about curing diabetes - both Type 2 and Type 1!! Now I am judging. False claims just drive me crazy. I wrote a comment. It is currently being moderated, so I do not know if it will make the cut, but I wanted to share what I wrote.
Regarding the comment about Type 1 diabetes. It is not on this web page, and most likely not referenced in the video, I assume. I hope not.
However, the page within <insert company name> that brought me to this video made the claim they can reverse Type 1 and Type 2. Type 2, I get. Type 1... We should talk.
My son is a Type 1. I grew up with parents that lived organically and exercised long before it was cool and the billion dollar industry it is. I always exercised, pretty much ate healthy, and did so when I was pregnant, breast fed my son, made his baby food from products that were organic. And guess what, at 20 months old he was diagnosed with Type 1. We have no family history.
There is so much that is unknown about the cause of Type 1, but you will see that people from all cultures and walks of life and lifestyles are getting this disease. Be sure no amount of green, healthy eating is going to cure my son or any other Type 1. If it did, I would be funneling the green juice I have every morning into his little 6 year old body. Type 1 is auto-immune and the body destroys the pancreas. Why that is, we do not know for sure. Great theories exist, but not completely finalized.
I genuinely like this site and the recipes and lifestyle suggestion as many people will benefit from eating better. However my heart broke a little when you claimed you can cure Type 1 as that just is not true. Visions of parents with newly diagnosed kids, or newly diagnosed Type 1s that are desperately looking for a cure filled my head and heart.
I will still consider to try the amazing gluten free bread recipe you shared on your site as it sounds wonderful. For the new year, I hope you will consider rewording your claim on curing Type 1 as it completely takes away credibility from your site, organization and mission.
Pam, Type 1 Advocate
If you come across such nonsense on the internet, I suggest you do the same. We are more powerful in numbers and can definitely save new Type 1's from loosing time with false claims.
Monday, December 29, 2014
Its a busy time of year with many celebrations as we get ready for the new year. People often worry or ask about how to manage what their Type 1 child eats during holidays and celebrations. Or, if we go to dinner at a friend's, I am often asked what they can make for my son for dinner. The answer is nothing special.
He is usually too excited at a gathering to eat much anyway, but it wouldn't matter. As long as I can correctly cover his carbs with insulin we are good. That does not mean that those cooking need to figure out the carbs for their dishes of course, but it means I need to pay attention to what he eats and learn from previous experiences about carb counting and in some cases increasing hourly basal rates.
What I find the most challenging, is that I always get up a couple of times during the night to check his blood sugar to make sure I bolused correctly. Sometimes I do not see the effects of dinner until long after he is asleep.
The reasons for this are many - the type of carb, excitement, activity that day, in some cases hormones - it just depends.
Perhaps it is also a comfort level as well. I would rather him not sleep with high blood sugar the whole night. While administering insulin at night is tricky, once you understand how to control these things with your doctor's or diabetes team's recommendations it will all make more sense for you as every child is different.
I often see people seeking advice in online groups asking if "anyone is awake". Despite the time differences across the world, there will likely be a parent of a diabetic child awake in your time zone at any given time - celebration or not. It is just part of the job of being a pancreas 24-7. Is it easy?
Lack of sleep is a difficult thing sometimes, but you are not alone.
Tuesday, December 23, 2014
We are pretty optimistic people, and optimistic when it comes to diabetes and its place in my son's life. We consider it extremely important and something that must be managed always, but it is not something that should stop him from doing anything.
On most days we do not think twice about that. However, there are some days where you can feel on top of the world and go to a low that is more about mental state than blood sugar all in the same day. I read about caretakers of Type 1 experiencing it often as well, and I am no different.
One morning my son is defeating rock walls, and in the same evening he is terrified at the thought of having to put a needle in his stomach to lodge the cannula for his insulin pump insertion site into his body. I don't blame him. It is a pretty long needle, but we must rotate the locations to keep the tissue where he prefers to put it (in his backside) healthy.
I have given myself an injection in the stomach before. It did not hurt, but that needle was way smaller so I am not sure I can empathize. Nor do I try to tell him it is no big deal. It is a big deal.
I have no easy answer for this. It is inevitable, and at some point or another every Type 1 child will deal with one challenge or another as they learn to live with this disease. It is exceptionally hard to find the words to mend his broken heart as he realizes all too young that life is not fair. It is one of the few times he ever really verbalizes he wishes he was not diabetic. He wishes it so much through his tears that you can feel it with every ounce of his being.
Once it is done, he is not upset for long. It is difficult to remind him how brave he is and that someday this will be easier for him because we are only hopeful that it will be. I hug him, but he quickly wants to get back to life as normal.
He seems okay and is his happy, carefree self again. We play or read and laugh. At some point much later, I realize I need to take a breathe.
Fortunately, he wakes up the next day ready to take on the world again and see his friends. I hope he always feels this way, and that the times when we feel low are very few and far between.
Friday, December 12, 2014
I just responded to a tweet I came across today. Someone posted a picture of a chocolate bar with a label for proceeds donated to the JDRF on it. The statement was "CANDY BARS being sold for fundraising for juvenile diabetes ?? JDRF a bit ironic, no?"
While I am all about healthy eating, my response was the same I tell everyone. This is what my son's endocrinologist taught me and what he has published. It is also the same advice that other Type 1s hear from their endocrinologist.
It is important to match insulin to the carbs you eat. The Type 1 pancreas does not work. No amount of healthy eating will help that pancreas produce insulin. We try eat the same as if we were not Type 1, and those habits are part of a healthy lifestyle and everything in moderation.
Are we living off of chocolate bars? Of course not. But if my active, healthy Type 1 son wants to enjoy some birthday cake with his friends at a party, am I going to let him eat it? You bet I am. I am going to let him be a kid and give him more insulin to cover it in the best way I know how.
JDRF does a lot of good work and supports research for a cure for Type 1. For those of us reading this across the miles, if JDRF finds a cure, we all win. If they get donations from chocolate sales to support those miracles, so be it.
As we wind down the year, in whatever format you enjoy this time of year, be happy, healthy, and enjoy your chocolate as you cover the carbs!
Saturday, December 6, 2014
My first response and advise was kind of a data dump of the highlights of what to consider in those early days. How we integrated back into preschool, try to sleep, mourn the loss of a pancreas, expect the blood sugar to be volatile until they grow a bit more, take it day by day, and then some.
I thought of her often throughout the week. At the end of the week, it was a holiday here, and the kids were off school. As I was getting ready for work one morning, I watched my son play in the park with his friends just below my bedroom window.
He had new shoes and was jumping and climbing all over the place as one does when they have new shoes. He was doing all the normal things any kid would do, and even more active than some.
When I see him, I do not see a disease. Nor does anyone else. He is a normal, active 6-year old who loves music, his friends, running, sports and much more.
I wish I had a time machine so I could give that mom a ride into the future. That mom and really any mom dealing with a young, newly diagnosed Type 1. It would be near impossible think of now, but to show her that things will be normal sooner rather than later, and that there is no reason why any child with Type 1 cannot have a normal, happy and healthy life.
Tuesday, December 2, 2014
|DiapointME at the 2014 Abu Dhabi November Diabetic Walk|
As usual, another year has flown by. November is finished. Diabetes month is finished. But in reality, it is not. For all of us with diabetes in our lives, every month is diabetes month. Every day is diabetes day. We live with it every single day, and often by the hour.
This is not to say we are looking for special treatment every day. We are not. We wish to be normal just like everyone else. In some places this is easier, in others it is not.
Just because November is over doesn't mean everything comes to a screeching halt. With so many events pushed together in one month, there is plenty of opportunity during 11 other months of the year to advocate or raise awareness. So, as we now wind the year down, if you wish to make a difference for someone, a group, or a community there is no better time than the present.
Thursday, November 13, 2014
It is already World Diabetes Day here. I should be asleep as we are celebrating with an early start to go camping tomorrow. We are "celebrating" with our usual busy life, and proof that diabetes does not slow us down at all.
Two days ago I was reminded by a post in a diabetic group that I follow about why it is observed, and why on this day. Dr. Fredrick Banting led the discovery of insulin in 1921. He was born on November 14th. He and those he worked with forever changed the life of many people that less than 100 years ago received a diagnosis that was pretty much a death sentence.
I was also reminded that in 2011, we went to Stockholm. It is there that I first learned about Dr. Banting and his Nobel Prize in the Nobel Museum. In that building is a tribute to all prize winners, and there is a vile of insulin.
My son was diagnosed about a year before that trip, so when I came upon then insulin, it was very unexpected. I did not want to leave it, but yet, I did not know what to do with it. I didn't even take a picture of it. I took pictures of Nelson Mandela's ring and many other things in the museum, but why not the insulin?
I was moved by it, but yet I did not want to be reminded of it. I see insulin every day. I am happy that I do, but perhaps at the time I was still getting used to that fact even though one year in.
So, how will you "celebrate" World Diabetes Day? No plans? Why not go out and do something to defy diabetes, and when you take your next injection or bolus, say a little thank you to Dr. Banting.
Monday, November 10, 2014
|Blue for Diabetes Awareness Month - Walking with my T1D son|
Last weekend our family participated in a Diabetes Walk in Abu Dhabi. It received a lot of publicity, so when my son heard about it on the radio, he was eager to go.
At this age, I am never quite sure what the message at these events might be, and how that will register with a young child. I want him to understand his disease is serious if not managed well, but yet not something that would ever keep him from achieving anything. We are very matter of fact with him about life, but yet we do not want him to worry unnecessarily either.
The day before the walk I started prepping my son in case there was a heavy focus on Type 2. I did not want him to misunderstand his disease, nor did I want him to feel left out, if that makes sense.
When I explained that Type 2 was a big problem for the UAE and the region, of course he asked why. I stated the obvious - not enough people are exercising and they have an unhealthy lifestyle. There are unfortunately a large number of fast food chains that have opened here in the last few years, and this acquired taste for that food is not helping.
He thought for a few minutes. Then, as he always does, he found the answer. "Yes mommy. They should eat more slow foods!"
In the end, I did not need to worry as the walk did not really focus on Type 2 as I expected. It was very well organized, but more about 21,000 plus people heading out to the F1 race track to have a nice 3K walk to promote general fitness. While I do wish there was a little more focus on diabetes, the organization achieved their goal in creating a "fun" way to draw attention to the need to exercise and stay fit.
And as an added bonus, I get to teach my sun about sustainable, local farming and fresh food!
Monday, October 27, 2014
|Yes, one of those super heroes is wearing an insulin pump|
Much to my surprise, Halloween becomes a bigger deal every year in other parts of the world. My first year outside the US, I completely forgot about it. I was quickly reminded when some children came to knock on my door. They assumed that as an American, I must have had a treat or two waiting.. Sadly, I did not.
Fast forward to Dubai. There is a Fall Festival at my son's school and several sugar laced activities throughout the week. My neighbor and I have thrown a costume party every year for the kids in our neighborhood, and diabetes does not interfere. My son trick-or-treats with his friends as well.
I think the biggest challenge we face at Halloween is stopping to find his pump inside his Halloween costume. This year will be no different since he has a one piece Star Wars character suit. I need a strategy to get that pump out and bolus quickly so he can keep up with his friends running from door to door. Our biggest challenge with diabetes right now - feeling like we are missing something, even if for five seconds.
Many people often ask, "Wow, Halloween must be difficult since he cannot have any candy." They are horrified in a very ghostly, open mouth way when I tell them he can. And I actually give it to him. One of the first things our endocrinologist told us was to not make food forbidden. "You do not want an eating disorder later on", I recall him saying. Teach healthy eating habits. Let him be a kid.
Even if my child was not diabetic, "being a kid" would not mean a candy eating free for all after trick or treating. What this means is we may have a piece of candy or two that night, and then save the rest for later. We bolus for the candy eaten at the time, and then put the rest in the cabinet or share it with others. Everything in moderation.
I like to think our relationship with candy and sweets is pretty good. After that night, my son usually forgets about it and never gives it a second thought. I could easily recycle his candy for the next Halloween. I know this could change over time, but I am still pleased.
However, he is also learning about sweets from a pro. Today I walked into a super market in Dubai, and I found brands of candy I had not seen in years. American "classics" I didn't even think they made anymore. And because of his love of peanut butter, of course I had to introduce him to Reese's Pieces.... forget that I will end up eating more of it than him. And of course it is all in the name of diabetes to save his blood sugar from the candy!
If your child is not at a school that celebrates a Halloween, or Fall Festival, I am sure these feelings could apply to other celebrations. My advice is aim for moderation. Let your child be a kid, and help them make good choices. If you are like me and cave to the occasional, nostalgic sweet, I have yet to find a solution for that one. Please let me know when you do!
Thursday, October 23, 2014
I often say this, and I know it sounds crazy, but diabetes keeps me living in the present. Yes, I adjust that last number, and hold my breath until the future reading, but really, I am not living too far into the future as I anticipate blood sugars.
In the media, there has been a lot of press about the "eminent cure" lately. Clinical trials for the artificial pancreas in children are underway, and a major breakthrough in stem cell research has just been announced. These are fantastic, and like all parents of diabetic children, I am very excited about the implications.
A cure is not available yet. I personally do not promise my six year old that he will see a cure. I do not yet tell him to hope for a cure. He must learn how to live with this disease in the present, and I worry that telling him a cure is just around the corner could be counterproductive of his acceptance right now. He has to take this crazy bull by the horns and ride it.
I do tell him that someday a doctor or scientist will invent something amazing to make his diabetic life easier. I do not specify what that would be because a child's expectations are so high.
Some of you reading this may just be diagnosed and learning the basics, therefore you may not even be aware of a potential cure. That is okay. Focus on the basics and work with your endocrinologist to find out what works for your child, your family and your routine. The cure will come... maybe.... eventually... we hope.
And if it doesn't, we will be okay. You will be okay. Your child will be okay. Right now, the best tool you have is information. Arm yourself with knowledge and you will be better able to manage this. It will not come overnight, and sometimes it will seem like too much. Just take small steps, and do not worry about becoming an expert. It will happen before you know it.
In the meantime, I suggest to live in the present. Take a deep breath and find the best position you can hold onto as you find your zen moment with diabetes.
Saturday, September 13, 2014
Sunday, August 31, 2014
My immediate gut reaction was NO.
Trying to keep an open mind, I read the article, and did some further research before writing this.
While I do applaud that the article for starting with the statement Diabetics should not be banned from driving but be educated about their condition so that they are ready for the challenge when they take the wheel, specialists said, it digressed from there.
It continued to say that diabetics are banned from driving in the US. This is simply not true. Diabetics do drive in the US.
Yes, there can be risks involved, and some symptoms may impair a diabetic if they are not careful. Every state in the US has different laws on driving, but a blanket statement that diabetics are forbidden to drive in the US is false.
Everyone must pass an eye exam - diabetic or not. In some cases, a letter from a physician that the person is fit to drive may be required.
The newspaper interviewed an endocrinologist at a local clinic who cited that diabetic truck drivers that have to wait a long time at check-points may suffer from hypoglycemia, or low blood sugar. The doctor then goes on to say that "there are smart drugs today that can treat diabetes and no ban on diabetics driving light vehicles is necessary".
It is so important to not have a drop in blood sugar because it can effect judgement, someone may faint, have a seizure or worse. Obviously this would endanger others on the road too. There are other complications the article discusses, so yes, it is important to manage your diabetes while driving.
The article emphasizes the importance of eating when this happens. This is key for any diabetic at any place, any time. A diabetic driver should always have at minimum a basic diabetic medical kit (glucometer, glucagon and a few other items) a spare juice box and a small non-perishable snack with them; and if driving, in their vehicle to treat a hypoglycemia. This is a very cost effective treatment. No "smart drugs" required.
I am not sure what was meant by this reference. Perhaps insulin is the "smart drug", but whatever it is sounds really expensive and out of reach for someone working on a truck driver's salary. Continuing the discussion about the importance of eating and proper snacking would be much more beneficial for truck drivers at check points.
The article says that 20% of residents suffer from diabetes. Maybe.
The last time I did a diabetes study, long before my son was born and diabetes was part of my life, the UAE local population had one of the highest prevalence rates of diabetes in the world. Today, according to Diabetesuae.ae, the "UAE is ranked 15th worldwide, with 18.98% of the UAE population living with diabetes".
World studies of diseases are typically done on location populations, not the residents or expatriate populations. This 18.98% is the estimated population of Emirates with diabetes.
The website goes on to state that "A sedentary lifestyle and bad eating habits have been cited as the main causes of the increasing prevalence of Type 2 diabetes in the UAE." It is important to note that Qatar, Kuwait and Saudi Arabia had a slightly higher prevalence of Type 2 than the UAE, making it a regional issue for the Gulf.
Based on my previous research and this information, I felt the article needed a little more probing into who that 20% is. Typically, the drivers referred to in the article are from Pakistan, India, or other Near Eastern countries. India does have its share of diabetes, but in the context of Indians living in the UAE, I cannot confirm those statistics.
The article mentions that "given the socio-economic background of most patients, many would not have the money to take time to take care of themselves". This is the statement that really bothered me. It bothered me a lot. Why?
In the context of Type 2, which is the bigger issue in this region, it is not money and time that is the factor. To some extent yes, these resources will play a role in any disease. But they are not the main culprit, or excuse for poor diabetic management.
The number one resource needed to fight Type 2 is education. The need for diabetes education is universal. Education about healthy eating, exercise and a healthy lifestyle. Education about diabetes management.
So if I may ask, Gulf News, RTA and the medical community of the UAE. If there are increasing numbers of road accidents caused by the diabetic population in the UAE, could we please work together to develop an education campaign to target this issue?
A focus on checking blood sugar before getting behind the wheel, carrying proper snacks and a healthy lifestyle will go a very long way.
If you want to read the article that was in the Gulf News, you can find it here
Thursday, August 28, 2014
The day my son was diagnosed is very vivid as well as the hospital stay and events that followed. While everything changed drastically that day, I no longer think of it often as diabetes is just part of our life now. For my son, he was diagnosed at 20 months old so he does not remember life before diabetes. It just is.
I forget the date now, and then I will read about someone celebrating their dia-versary and I am reminded. That happened today and I realized the day came and went last week and I didn't even realize it.
When cleaning some shelves last month, I came across the calendar I kept that year. There were all the typical notes of a working mom, a doctors appointment and a few diabetic notes that I remember writing when we were calling different places to figure out what to do. The rest of the year was empty. There was only one thing to focus on the remainder of that year, and that was accepting diabetes. There were many things to write and follow, but I had no idea what those were at the time. I threw that calendar away in my office clean up as I had no need for it, and I do not want to live in the past.
While we don't focus on our diagnosis day, we do focus on other milestones. A better A1C, an insertion site taken to the stomach, being brave for the annual blood draw for testing, overcoming a bad stomach virus... The list goes on. Sometimes it is diabetic related, other times not.
There are many opportunities to celebrate diabetes. I think you have to find what works for you and your child. Just as every diabetes case is different, the way you celebrate the milestones will differ as well.
Saturday, August 23, 2014
I agree with the diabetic blog, A Sweet Life, on this one. It is too soon. The ALS challenge is still high profile, and maybe ALS needs it more than us right now. Sure, I would love to see a cure for diabetes, but I am very happy to see ALS get this attention and growth that it probably needs.
The ice bucket challenge grew organically. If the diabetic community did something similar, the message would be diluted with all the focus on ALS and other communities trying to draw awareness to their cause. I also think the natural viral activity of the ALS challenge is one of the things that is so appealing about it.
So what should we do to draw more awareness to diabetes? I do not have the answer or any suggestions right now. I personally will keep doing what I have been doing to share information and educate anyone who asks.
On the subject of media attention and diabetes, last week I retweeted coverage of Matthew McConaughey wearing a fanny pack to a baseball game. When a reporter asked him about it, Matthew says,
"I'm not afraid of the Fanny Pack. You gotta kind of put it to the side to make it look a little not as nerdy, but still, practicality wins out. I got so much gear in here that I don't want it in my pockets".
Obviously, he mentions nothing of diabetes, but he sums up the pump pack for me. Do not be afraid of it. Most importantly - it is practical.
Many celebrity sites and news agencies called it unfashionable. I tagged him and thanked him for making diabetes a little cooler. No response as of yet. None needed. I just hope he ignores the media and continues to strive for practicality.
Sunday, August 17, 2014
School will start soon, so we all need to take the time to sit down and write out directives and plans for our children's schools, teachers and others, and meet with them all to go over those plans in detail.
This is just one of the many things we have to do, and it does not mean that our guard is down the other 50 or so weeks of the year. As the caretaker of a child with Type 1, you always have to be on top of it. You know the in's and out's as a pancreas, but you should also not be afraid to be your child's advocate and educate those that need it, regardless of the situation.
I have found myself doing this, but I didn't actually realize I was doing it at the time. I thought I was just insisting my son get proper medical care and normal social treatment.
One of our first experiences with this was during our first DKA that put us in the hospital. My son was overdosed twice during that visit - once in the ER when a hydration drip was not set properly, and again on the floor when the nurse proceeded to give him glucose with no insulin running. We are very fortunate that these were not serious overdoses.
My husband and I have a background in healthcare management. We know that human mistakes can still occur anywhere at anytime, but that really got our attention.
You do not have to be a doctor to be involved in your child's care. Although there are doctors and nurses, once you live with Type 1, no one will know your child better than you will. Make sure they are getting the correct care and medication they need. If you are not getting that, then keep escalating and talking to people until you find someone that can understand your needs.
Sometimes you may find yourself educating medical staff about diabetes or some of the latest devices available. I was shocked when no one at the hospital knew there was a glucose meter that could measure keytones, or knew how to insert the site of an insulin pump. It was quite a site to see the pediatric nurses quickly run down the hall to our room to watch me do this.
After that first DKA experience, and other medical errors in the years that followed, I now follow up on medical orders given. Nurses are great advocates, but they are also human. Always understand what it is the doctor has ordered them to do. You have the right to ask questions and understand the treatment plan.
Advocacy and education does not always take place in a hospital room. It happens in other places too - when scheduling doctor's appointments, dealing with insurance, extra circular activities, in public, at school and more.
I am lucky that my son's school has been very supportive to ensure he is not excluded from anything because of his diabetes. However, the first time he had a field trip, the KG1 lead was insisting that no one could go with him to be his caretaker for diabetes. Neither I nor a designated caretaker would be allowed to attend. Period. The obvious result, would be my son would not be able to attend the event.
My heart broke for him and I wanted to cry on his behalf when the teacher informed me. Instead I took a deep breath, went home and wrote an incredibly long letter to his teacher, the principal and school health office. The nurse was great in helping me advocate for him.
With a few bits and pieces of paper work, it was resolved. It didn't make me feel any happier that someone who was uneducated about the situation would be so quick to dismiss a child from an activity to make him feel different. At least he never knew it happened and I was able to manage this first road block behind the scenes to ensure he experiences all school activities as normal as possible.
Not every day is full of education and advocacy, but be ready for it. It is something the diabetic child will face at different times throughout their life for different reasons. Like anything, as a parent we need to be prepared to handle it, and once our children are old enough they need to also know how to manage it.
Where to start? If faced with a tough situation, don't hesitate to reach out to a support group - whether in person or online. Its most likely something someone has dealt with before and other parents of Type 1 would be more than happy to offer their advice and support.
Monday, July 28, 2014
My son rode a bike for the first time without the training wheels yesterday. Knowing him well, I asked my mother-in-law to have her neighbor remove the extra wheels before we arrived to her summer home in the rural Marmara region of Turkey.
I am not one of those pushy parents that drives their kids to do things before they are ready - actually quite the opposite as I feel kids are under so much pressure to achieve at such a young age in the modern world. However, I have realized that as a parent, sometimes we need to insist to encourage them to realize their potential as they grow. Or this is just a big assumption on my part that will result in an epic fail.
Living in Dubai our children have access to many great things, but sometimes the simple things like riding a bicycle through the neighborhood is not possible. There are a few cookie-cutter neighborhoods where it is possible, and there is an amazing bicycle track but you have to drive to get there. It is not always easy to just go outside and hop on your bike. This is the make up of the city and the weather is not always great in the summer months.
The first day without the wheels, he refused. He wanted the bicycle the 4-year old across the street was using. Unknown to him, she has the training wheels from his bike. The second day he was still not pleased with the situation. The third day, with a little help to start, he was riding almost immediately.
I am forever amazed at the stories I read about diabetic children. They take many needles every day - pricks to check blood sugar, long needles to insert catheters if they use an insulin pump, or several injections every day if they don't pump. Not to mention the blood draws from veins for regular check ups that are so hard to find on small children. - All much more difficult than riding a bike for sure.
I have learned a lot as a parent, and maybe even a bit more as the parent of a diabetic child. This week's lesson learned: You are always stronger than you think. Most likely, your fear to try something new is a small drop in the bucket compared what you've already accomplished or endured.
Saturday, July 26, 2014
- Insertion sites. I always take more than I need. And even back up for the back up. There will be those times when for whatever strange reason, you will miss and the catheter will not go quite in, so you might find yourself doing three in a row until you get it right. Its rare, but I when it has happened, it is when we travel.
- Reservoirs, additional connectors and insertion site covers
- Juice, snacks and more juice. I have higher carb juice and some of the healthier low carb juice. I do not take many because I can buy them in most places, but I do take enough for a couple of days. I also take a few in the carry on as well.
- Nonperishable snacks. This usually consists of some organic brands without too much refined sugar. In general around 15 carbs or so. Once we are settled, we encourage fresh fruits and vegetable snacks whenever possible. It is not always possible on the go, so we are prepared with what we know works for us.
- Breakfast for the first day. This could be in the form of a bar, or a small box of cereal. My son is an early riser and a diabetic cannot always wait to eat first thing in the morning. With jet late and everything else, I'll give him a light breakfast in the room if needed.
- Keytone meters and strips. If you aren’t already, you will be amazed at how many doctors and nurses have never seen a meter that measures these.
- In my carry on I have a back up of everything, plus the insulin needed with me. If I am in a country where I feel I can get an additional vile if easily needed, I will just take the one I am currently using.
- The cool pack to carry the insulin. Good for the beach and warm climates
- Band aids, or other tape to help secure the insertion sites while swimming. I have noticed that after swimming in salt water, it helps to rinse the insertion site with fresh water right away. Otherwise it is difficult to remove the cover and put the pump back on. I assume this is the salt making it stick a bit.
- Another helpful hint on swimming: I recently read a good tip from someone who uses long lasting insulin for beach holidays and then uses the pump to bolus. I really like this suggestion and plan to try it in the future. It will save us from too many highs while he is on the beach playing in the water.
- Extra glucometers in case something gets lost
- Tissues, wet wipes, alcohol wipes, hand sanitizer
- Directives from my son’s doctor about how to treat a DKA. After a hospitalization in a "good" hospital in another country, no one there had a clue about diabetes and DKA, I requested a document I could show to a doctor if we were ever admitted again. This would at least give them some idea of what to do instead of the fiasco we dealt with in that instance.
- Medicine to stop nausea and vomiting.
- Some kind of hydration drink, or the powder equivalent is even better. In the event of dehydration and vomiting, if I can get my son to drink that, it makes a huge difference in the speed of recovery and cleaning out keytones. I have some kind of Pedialite powder equivalent. I have no idea how a sport drink powder would be in these cases.
- Glucogen, obviously. I always take one in the carry on, and at least one back up in another carry on. For the hand luggage items, I always think worst-case scenario. If it gets stolen in an airport, I need a back up in another carry on.
- Extra syringes
- An insane number of lancets all packed in different luggage.
- Extra glucometers. Call me paranoid, but one in every luggage. One in every luggage is kind of my basic rule for a lot of these items. Sadly, airlines do loose luggage sometimes.
- Which reminds me of my inserter. I also bring an extra in one of our bags.
- I used to carry a letter from my son’s physician stating he is a Type 1 diabetic. It is pretty obvious to people as he is wired to a pump, and people have been very understanding. Although I do not travel to the US often, I have found some security less understanding there than in other countries. Once I get more into the details, they usually get it. I remind them that if there were turbulence, and airline staff could not serve juice I would need it if my son's blood sugar went low. I have only had to explain this once, but if you are ever asked, it is logical… and I did have this experience once when I needed water. For water, I try to buy a bottle near the gate to take on the plane.
Wednesday, July 16, 2014
I say wonderful because we went to two great places, and the previous two times we travelled we dealt with very bad DKA. One of those put us in the hospital in the summer of 2013, the other earlier this year put us out for a few days where we could have easily gone to a reputable hospital had there been one nearby... thankfully he was still drinking fluid, but more to come on those experiences later.
For about two months now I have been wanting to write a post about how to prepare for travel. Many people ask this question, and I am always looking to understand how to do it better, or reflect on what I could have done better myself, so it is important to share and discuss it with other diabetics and other diabetics and caretakers.
Once my head no longer feels like it is about to explode, my throat no longer swollen, fever gone and I do not feel so manic at night as a result of this flu, I will write about this, and many more subjects on my mind.
In the meantime, I just hope I do not share this flu with my son.. his numbers have been pretty good and he is happy and healthy, so I'd like to ride out the rest of the summer healthy before school starts and everyone comes back to school with their colds and flu!
Stay well and happy summer travels!
Tuesday, June 24, 2014
|Sheikh Zayed Grand Mosque, Abu Dhabi|
I am aware that people with severe medical conditions are exempt from fasting - this includes diabetics according to what I read. Fasting was not medically recommended for diabetics. This is due to the high chance of hypoglycemia, which can be deadly. I would expect the long days of summer would only increase the risks.
I suggest to read something like this document, or others out there to get more information before you meet with your doctor to discuss fasting. The link I have posted was written by a physician in Egypt, so he understands the importance of Ramadan.
Please do not just read a few articles and try to go it alone. It is important to go to your doctor that manages your diabetes with knowledge and questions. As we know - especially in the case of Type 1, each body is different so may have different requirements.
As the article I posted suggests, also make sure your family, coworkers and others who will be near you throughout the day are all aware of your diabetes and aware of what to do should you need help. We should all be doing this even when it is not Ramadan.
If you do decide that you want to try to fast, speak to your doctor about this before you start. I would also assume some follow up throughout Ramadan would be necessary.
Saturday, June 14, 2014
I am not some crazy perfectionist mom, but I am fighting a silent disease that if not well managed can effect my son's health as he gets older. His eyes, feet, heart, or other organs. As his primary caretaker, I am responsible to do that for him.
According to an article on Medscape about children not meeting the A1c targets, The ADA, (American Diabetes Association) recommends hemoglobin A1c targets of less than 8.5% for children under age 6, less than 8.0% for those age 6-12 years old, and less than 7.5% for those age 13 and up. The International Society for Pediatric and Adolescent Diabetes (ISPAD) recommends a target of 7.5% or less for children of all ages (M. Tucker)
I will continue to strive for less than the ISAPD target, and less than 7%. Normal hemoglobin in a non-diabetic person is between the range of 4-6%. Doctors will tell you to be careful with managing it too tightly in a Type 1. A result closer to 6% could mean too many low blood sugar readings, or hypoglycemia which robs the body of the sugar it needs. There is probably a very fine line between well managed blood sugar and over managing that in a Type 1.
While our endocrinologist thinks I am awesome, our pediatrician often lectures me on the importance of getting to 6%. I do know the importance. There may be parents that don't, but its frustrating when you know. I think he is a good pediatrician, so I let him do his doctor thing. I always strive to do it better, but the lecture of what I already know doesn't help.
You will probably find that many doctors have differing opinions about A1c. Even international standards seem to not agree. This goes back to one of my mantras of arming yourself with as much information as possible and making the best decisions with the doctor that you consider your primary diabetic source. In this case, it is our pediatric endocrinologist.
So while I am told I should hold my head high at 7.2%, I am kind of defeated by my own goal. I often compare diabetes to surfing. There are A1c waves, and sometimes I surf quick, large monstrous blood sugar waves too. After last week's reading I am now paddling out to sea again to catch the big wave, ride it smoothly for as long as I can and hopefully not have a bad wipe out.
A windsurfing image seemed appropriate because with any luck, maybe the wind will carry me a bit too.
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Wednesday, June 11, 2014
What is going on? I cannot believe the headlines. It is so random. It is so heartbreaking.
Before the Sandy Hook incident, there were other school shootings in the US. None should be taken lightly. Even one is too many! These are tragedies that once you read about them, you can't unread it.
I am in another country with a very low crime rate, and no school shootings that I am aware of. The fact that schools can go on "lock down" made me weary as the mom of a Type 1 diabetic. That means my son needs a snack box in every location he could be in throughout the day.
Last year my son had a homeroom, and he would go to PE, Library and Music in other rooms. This year he had a few other activities to rotate through, which meant even more locations he could be in at any given time of hypoglycemia. If there were a long lock down, that would be inevitable.
I felt kind of funny proposing "lock down boxes". Was I over reacting? Being too American? The former risk manager side of me coming out? Where to begin. How could I say, "You know, in case there is a school shooting". In Dubai, this is unheard of.
I gave myself the internal mom talk. Who cares what other people think. This is your child, and you are responsible for his well being. They will think you are crazy for a million other reasons, so just add this one to this list.
I first approached this through the school health office by asking if there was a lock down policy. I was honestly relieved to learn there was. One, because well, that is just good, and two, I did not look like such an idiot asking about it. I did not need to mention any school shooting or any other unthinkable catastrophe that will not likely happen. I then told them I wanted to meet with each teacher and place snack boxes in every room where he has classes and they were fine with that.
This ended up working out well because sometimes if the nurse comes down to the class to check him, instead of him going to the health office when he is low, they can treat it immediately without going all the way back to the health office. I tell myself that this also has some psychological benefit because he hates to miss out on what his class is doing. Even though he really doesn't miss anything, it helps him feel not so different. The class supplies are replenished, and all is good.
Each of my snack boxes holds about 2-3 juice boxes and a few snack bars. If your child can self manage and you have extra glucometers, then maybe you want to include those also. As his teachers are not trained to use his pump, I am okay that boluses be dealt with by the nurses or myself after they are released.
About a week before school, I met with my son's new teacher and new principal with a nurse from the health office. I provided them with general information about diabetes, as well as specifics to my son. I will do the same next year, perhaps minus the principal.
This worked out really well. I have a good relationship with the nurses and they also did additional education for all his teachers, and others who have diabetic children in their class. I trust they were thorough. Everyone then knows what to expect, you have peace of mind, and you know that your child will be looked after if a situation were to occur.
So as we approach the last few days of school, why do I write about this now? Well, its on my mind. When is diabetes not on our minds? When I read about something that effects children, the mom in me has to calculate how that would effect my son - both as a boy and a diabetic.
If you did not have supplies for a lock down at school this year, plan to have them ready to go on your child's first day of school for the fall. We can't predict everything, but we can try to prepare them or in this case, their environment.
Maybe someday there will be a cure, and parents of diabetic kids will not have to worry about these extra boxes. Just as much, I wish for no school shootings. Then no parent will have to think of these tragedies. Ever.
Saturday, June 7, 2014
A screen shot from my Up App.
I promise, it will get easier. I think I went a good two years without much sleep. Everyone has a learning curve, or a certain level of comfort they can sleep with. Don't judge yourself for not sleeping. You are normal.
Many people now use CGMs (Continuous Glucose Monitors) and that gives them a certain level of comfort. There are some CGMs that "talk" to insulin pumps and suspend the pump when a low is approaching to avoid hypoglycemia.
I usually check my son's blood sugar before I sleep. It gives me a feel for what to anticipate through the night. If it is incredibly off, I will set an alarm to wake up again and check it after I treated it. Often I wake up in the middle of the night to check him just because I wake up to check it. Don't' underestimate your instinct.
When managing sick days, I do not sleep much. If I do, I am up almost every hour to check until the blood sugar is consistent. You may be too worried to sleep, and that is okay too.
The picture here is a screen shot from my Up App. My husband got me one of those cool healthy lifestyle mobile devices that tracks my movement and sleep. It does encourage me to walk more, but there is no direct relationship to this and Type 1 caretaker sleeping patterns.
On this particular day, my son's pump insertion site was off causing some highs that needed to be managed throughout the night. Blue indicates sleep, orange is awake. It is a bit extreme, and not every day is like that, but there are times when it will feel like this.
I've not had time to do this either, but it seems like good advice. More importantly, the "bad" days will become fewer, and you will not want to miss out on the good ones.
Wednesday, June 4, 2014
You will most often be asked if a special diet is needed as the general population is most familiar with Type 2. Unfortunately, the management of Type 1 is not that easy as we are insulin dependent. Meaning, the pancreas does not work.
I often use a carrot vs carrot cake analogy. It doesn't matter. A Type 1 still needs insulin for what they eat. For sure, you need to have the proper carb to insulin ratios, and be aware of the other gazillion factors that can change things. It is not always straight forward, but this is my quick way to give some perspective in non medical terms.
For every five times you are asked this question, you will get at least one off the wall question. They are usually not meant to be hurtful, but sometimes I do take a deep breath before answering.
- What is in the pack? Is that a cell phone? I know this is Dubai, but he is only six!
- Does he still wear an oxygen mask? No. He never did.
- While it was not presented as a question, alarming all security staff at the entrance to a consulate that my child is wired with a device rather than just discretely wiping it down to check for explosives was a tough one.
- He will outgrow it, right? Unfortunately, no.
- You must have eaten too many sweets when you were pregnant. Forget the fact that I ate pretty healthy and exercised, but no, that doesn't cause Type 1 diabetes.
- Does it run in your family? Genetics can play a factor. There are families with more than one Type 1 child. We do not have any Type 1 history in our family.
- Which one of you (me or my husband) is a carrier?
- What is that? For his ears? (in regards to his insulin pump)
- We now happen to have a cat that is Type 2. Someone asked me recently if this was related to my son's diabetes. Diabetes is not transferable from animals to humans or vice versa - nor is it transferable from human to human.
- One of my son's sweet friends once asked if he kept carrots in his pump pack. This was after he asked what it was, and the response was "This is my pump. It keeps me healthy".
- A journalist from a local newspaper once asked me if I felt there needed to be more awareness about Type 1. Its a tough question. My answer was yes and no. Of course awareness is important, but the kind of awareness is more important. I suggested that she work on raising more awareness about Type 2 as that is a growing crisis for this region. Perhaps this is why I was not mentioned in the article.
Most of the questions were normal, and genuine. Except for the pregnancy one. The guy thought he was funny. Silence is golden.
I try to answer honestly and openly. If a question seems hard to answer, just stick to the facts as you know it. In most cases it will keep it at a manageable level if you are having one of those days. Depending on who it is, and how you feel you can decide how much of your cat's eating habits you want to share.
|Megan, our diabetic cat|
Saturday, May 31, 2014
|Source: The National 29 May 2014|
Diabetes has been in the news for the last several days in the UAE. The results from the Gates Foundation, 2013 Global Burden of Disease Study are out and it is not pretty. According to an article in The National over 66% of men and 60% of women in the UAE are overweight or obese. This is huge.
Locals have had one of the highest rates of diabetes in the world for some time now, and are genetically prone to the disease. Other studies do not single out the UAE, but the entire Gulf region. Countries such as Qatar, Kuwait and Saudi also have very high incidences of diabetes. Most of these studies focus on Type 2 as a result of lifestyle. Something can be done. We are Type 1, not so lucky, but we can manage. We manage.
Regardless of Type 1 or 2, there is a lot to be said for healthy eating and exercise. There is no better cure, or weight management methodology. For parents out there with children that have the potential to be Type 2, I promise that you do not want this disease in your life.
It is not fair for a child to have to prick themselves many times a day to check their blood sugar and deal with injections, or pump insertion site changes among the many other things. And if not managed correctly, the potential complications are too awful to consider.
Please brainwash your children early about the benefits of a healthy lifestyle with exercise and balanced eating. Everything in moderation.
I am not perfect, and I cave to the occasional cupcake or back of chips. We're only human, but we can't be that "human" every day. I strive to eat healthy and exercise. I try to make my son even more aware as I know it is in his best interest.
Last week as we drove past one of the most popular names in fast food he said to me, "You know what? Their chicken nuggets are mdae from rat heads."
I always tell him that place is unhealthy, and I cringe when it shows up at a birthday party. Outside of our ice cream addition, we do not eat there. However, I never mentioned rat heads. Apparently, someone's brother saw it on YouTube, so of course it must be true.
I am always honest, but I didn't debate this one. I just let that one go and admitted that I was uninformed about the rat heads. If he believes that fast food is made from rat heads, then so be it.
Action must be taken now. The world is late to act on this subject. Cigarettes are heavily taxed or plastered with ugly images of black lungs in some countries. Perhaps we should consider to do the same with fast food - tax it heavily and find some rat head stickers.
Saturday, May 17, 2014
Diabetes, left me empty and uninspired. The people, and especially the children, who deal with it inspire me beyond words, but artistically, it just wasn't doing anything for me.