Saturday, December 27, 2014

When a child is diagnosed with type 1 diabetes AND celiac



My son was diagnosed with diabetes in April 2011.  Then in May, we attended our first appointment with the pediatric endocrinologist - a two hour drive away.  At the end of our appointment, the doctor gave us a slip for blood work to be done right before our next appointment in August.  At that next appointment, the doctor gave us the next shocker - our son almost certainly had celiac, too, based on his sky high blood test numbers!  We had no idea he had even been tested for it, so it was quite a surprise!  I was a few months pregnant and already weepy, and so I, of course, dissolved into a puddle of tears at the news.

At first, I have to admit, that following the gluten free diet seemed more challenging than type 1 diabetes!  I spent a lot of time placing calls to companies asking if their products were, in fact, gluten free.  Going out to lunch became almost impossible, because every kid friendly restaurant seemed to have mostly foods containing gluten. Treating low blood sugar became a little trickier, too.  Plus, I often felt like a control freak supervising all the cooking and baking my relatives did when they came to visit.

Looking back now, I think a big part of the challenge with celiac was that it involved something so personal - my son's diet.  Changing the way you have been eating for five, ten, fifteen or more years can be a daunting task.  Everyone has likes and dislikes.  Some people literally cannot stomach certain foods at all.  Plus, there is a certain amount of comparison that can go on in people's minds when eating with other people.  I remember going to play dates with my two oldest sons when they were little and comparing in my mind my children's ordinary healthy snacks to other kids' super healthy snacks.  I often felt inadequate in the nutrition department.  I even feel this tension a bit meeting other parents with type 1 diabetes.  Some parents allow their child to eat a regular treat and others strictly control their child's diet.

At a future appointment, one of our diabetes educators, who is also a dietician, counseled us that our son could eat items not containing gluten but listed as being manufactured on equipment that may contain wheat.  This was a load off!  Nowadays, many grocery stores add a little liability disclaimer to virtually all their generic products stating they may contain wheat.  Does a can of plain peanuts really contain wheat?  Does a package of plain rice cakes also contain wheat?  We would often avoid those items just in case.  The dietician told us that type 1 diabetics who also have celiac often can eat products free of gluten but yet possibly manufactured on equipment containing wheat.  If your child has celiac, please consult your doctor or dietician for his or her own dietary guidelines.

Now that my son has dealt with celiac for three and a half years, eating gluten free has become much more routine.  We have discovered through trial and error which gluten free products are yummy and which ones are awful. My son really likes Udi's gluten free products but very much does not like Rudi's products (however, maybe your child will love Rudi's - everyone is different).  My son loves Bisquick Gluten free pancake mix, Environkidz peanut choco crispy rice bars, Rice Chex cereal, and glutino gluten free table crackers.  When we eat out, Wendy's gluten free menu has been great; plus they cook many of their foods in little plastic dishes which reduces the possibility of contamination.  My son likes Papa Murphy's gluten free cheese pizza, too.  He has not experienced any ill effects thus far.   My son's celiac test numbers always come back in the normal range, so we must be doing a good job.  If that changes, we will talk to our doctor and diabetes educator about changes to his diet, particularly when eating out.  Celiac.org has a nice little list of gluten free candies which is especially helpful around Halloween.  However, if your child has diabetes, too, you will need to look up the carb amounts and also decide how much candy you approve of him eating.

Since the rest of my family does not have celiac, I still prepare gluten containing meals like spaghetti or pancakes; I just make a separate batch of gluten free noodles or pancakes for my son.  In terms of baking, I use gluten free all purpose flour or brown rice flour in almost all my recipes.  The brown rice flour is one of the least expensive gluten free flours (and it is whole grain), but the finished products are slightly crumbly.  However, all my kids still think they taste good!

As for Holy Communion, if your local Catholic Church does not dip the consecrated hosts in the wine cup, your child may be able to receive Jesus solely from the chalice.  Remember, when you receive either the host or the wine, you are receiving both Jesus' body and blood.  Also, many churches offer a low gluten host that some people with celiac can tolerate.  My son has had no ill effects from receiving it at Mass.

Saturday, December 13, 2014

Teenagers



When my son was diagnosed with diabetes at age 11, I was very fastidious about writing everything down - almost compulsive about it - and following all the protocols to a tee.  I even wrote down everything he ate, thinking the endocrinologist would want to comment on his diet.  At that time, a BG in the 300s was atypical and a cause for concern.  My son even went to one checkup and had an A1C of close to 7!  He was voted the best patient of the day at the doctor's office!

Fast forward to now - the teenage years.  That A1C I mentioned was the best ever and it has slowly increased each checkup.  Because my son is a teenager and also due to the type of personality he has, he wants to be in almost complete control of his diabetes care even though he doesn't want to count carbs consistently, bolus after every meal, check for ketones when over 300 or when sick, or check his BG at least four times per day.

It can be super frustrating for us, as the parents, to see our son not want to take care of himself yet refuse to let us help.  At times, we see a glimmer of hope and maturity on his part - he will stay awake and keep checking every hour when he gets a BG of 400 late at night.  However, often that little hope of him taking better care of himself flies away into the wind.

When you have a teenager, especially one with a certain type of strong willed personality, you cannot just put your foot down and insist he do such and such a thing.  That only results in him including you less in his diabetes care and contributes to more anger and volatility in the relationship.

I wish I had the answer to this quandary.  Prayer is something good to do in this type of situation.  We have tried external motivators, but I feel, because they are not intrinsic motivators, they do not continue to motivate for long.  Praising him for the little successes is important.  Every checkup we attend, the doctor and the diabetes educator reinforce the importance of daily diabetes care which means that the information is not just coming from us - this is a good thing.  We have said those same things almost every day for the last 3 and a half years yet they do not seem to sink in.  Sometimes I think that laying off for a while might be the key.  In other areas that we have done that, there comes a point when maturity sets in and he amazes us!  However, it can be so scary to attempt this approach with regards to diabetes.  What has worked for you and your family?

Here are just a few links about teenagers and diabetes:

http://www.medscape.com/viewarticle/586455
http://www.ncbi.nlm.nih.gov/pubmed/16751852
http://www.everydayhealth.com/type-1-diabetes/one-moms-challenge-raising-teen-with-type-1-diabetes.aspx


Thursday, November 20, 2014

Broken Dreams but now BETTER Dreams

When my son was diagnosed with type 1 at age 11,  his dream was to one day be in the Air Force, possibly attend the Air Force Academy, and also fly jets.  My husband, being a private pilot, knew from the start that our son's dreams would go unfulfilled.  Of course, when people (even type 1 diabetics) hear that your son has type 1 diabetes, they tell you he can do anything.  While this is almost completely true, my son was interested in two of the maybe five things total that are off limits to a type 1 diabetic.

None of the branches of the military currently accept type 1 diabetics.  However, I believe there is a silver lining to this rain cloud.  Although I want my children's dreams to come true, what if my oldest had joined the Air Force and then was later seriously injured or killed while on duty?  Maybe his diagnosis was one way to steer him away from that danger?  In terms of flying, he could become a private pilot (with strict medical requirements that could be evoked for life if he were to have one unconscious event at any time, even when not flying) but he cannot fly commercially or fly large jets.

My son went through a period of time when he did not seem interested in planes anymore, but his interest has resumed.  He still studies military plane encyclopedias and aircraft mechanic manuals.  However, he now has a new interest - robotics - and he has a gift for it!  Maybe he would not have known about his talent for the subject had he not been diagnosed.  Although it is difficult to grieve the loss of a dream, sometimes it leads to a BETTER dream!

Monday, November 17, 2014

November 14th was World Diabetes Day

Happy World Diabetes Day!  Why do I say "Happy" World Diabetes Day? Well, thanks to Michele Quigley's thought provoking post and the approaching Thanksgiving holiday I, too, wanted to write from a perspective of gratitude.  I do plan to write often about the challenges of type 1 diabetes, but I also do not want my posts to be just about doom and gloom.

We are very blessed to be living in this time period when insulin is readily available.  Just a hundred years ago, children diagnosed with type 1 diabetes did not survive.  Whenever I am feeling sad, I try to remember that fact.  Today we have disposable, thinner needles - just decades ago, type 1 diabetes had to boil their much thicker needles in anticipation of the next injection.  We have blood glucose meters, continuous glucose monitors, and even an artificial pancreas being developed which make it easier to keep BGs in the proper range.  Years ago, diabetics used urine strips to approximate BGs - I can't imagine that method being very accurate.  And don't forget the insulin pump - they are getting smaller and smaller and can do fabulous calculations based on how many carbs you have just eaten, what your last BG was, and how long it has been since your last bolus.

A few years ago, there was a story published about a 90 year old man who has had type 1 diabetes for 85 years!  He is still active and going strong.  I think in the coming years, we will hear about more and more people living long lives with type 1 diabetes.

I know that diabetes is not fun, can be challenging, and some parents never stop getting teary eyed at times, but in a lot of ways, it is Happy World Diabetes Day!

Thursday, November 13, 2014

Anointing of the Sick

A year or two ago, our parish priest announced at Sunday Mass that there would be an Anointing of the Sick service.   After Mass, I asked one of the deacons if my son could take part.  Once he heard that he has diabetes, he told me to definitely bring him.

My son was the youngest person at the service.  Most of the attendees (as one would expect) were elderly or older adults.  I think it was a positive experience for him, and I hope it helped him grow closer to God.  However, he was a little disappointed that he was not miraculously healed from diabetes.  I must admit that I even watched his BGs closely the next few days to see if his insulin requirements were changing.  I think I had that same hope that he would be physically healed.  Maybe someday in the future, he will be healed.  I do believe he received graces from the sacrament and possibly spiritual healing.  Really, that is the type of healing that is most important for us as we journey home to heaven.

Why are some people healthy and others have chronic, life-long illnesses?  Does God allow illness so that the sufferers and caregivers need to rely more on God?  Maybe it really isn't so much the burden that we think it is, but a help to grow in the spiritual life? Or maybe God just allows disease because we live in a fallen world?  He then gives us grace to work through it. Hopefully all these questions will be answered in heaven one day.  I will probably keep pondering these things my whole life as I ask God to carry me and my son when I am feeling sad or burdened.

Monday, November 10, 2014

A Homeschooling Journey: Illness, a Baby Girl, and a Move Towards More Relaxed Homeschooling

I wrote this essay several years ago and it is currently posted on a Catholic homeschooling blog.  It gives a little bit of background on the year of my son's diagnosis, so I wanted to share it:

On a Tuesday morning, my oldest son slept on and off for hours at a time.  This was unusual for him.  Around noon he asked me to make him a grilled cheese sandwich.  Before I finished preparing it, he fell asleep once again.

That afternoon my four boys and I climbed into the minivan and drove to the medical center.  My son needed a physical for summer camp and since he appeared to have the flu or maybe something worse, I scheduled an appointment for him.  The pediatrician checked his vital signs and talked to him and seemed satisfied that he was healthy.  I sensed that was not true.  He actually needed to sit down for a couple minute break on the walk into our pediatrician's office from the car.  I asked her to test his urine, because my husband and I were suspecting diabetes.  She agreed it was a good idea to check.  A few minutes later she came back to the room with the grim news that he did indeed have type 1 diabetes and started the procedures for admitting him into the ICU.

That was a sad, sad day.  Our journey with this illness has been challenging and heart times.  However, one small thing stands out in my mind after the fact: my educational philosophy throughout this crisis.

I am embarrassed to admit that while my son lay ill in bed those few days before that dreadful Tuesday afternoon, I sat with him and read his lessons to him so that all three boys would stay on schedule.  No one else remembers this or finds this fact significant.  But I do.  It is one of those decisions I will always regret and also the decision I will always be glad led me to where I am today - on the path to becoming a more relaxed homeschooler.

It didn't even occur to me right away, not until the next fall.  I designed the new school year's schedule with my old educational philosophy in the forefront of my mind.  I bounced from one son to the next all day long, each day, until dinnertime, checking off all the items on our lists.

Then one day I thought to myself, "How am I going to keep up this crazy pace with a new baby come next January or February?" I reread Suzie Andres' book "Homeschooling with Gentleness" and read for the first time her book "A Little Way Of Homeschooling." The Holy Spirit inspired me to make many changes to our daily learning routine.  I followed the lead of one of the ladies I knew online to create a focus for each day.  I bought my oldest son a fun math program to keep his interest in this area alive.  I  also found a gentle writing program through the recommendation of other Catholic homeschoolers.  Learning did become more joyful.

In January, our baby girl arrived.  I believe God sent us her as a gift to help us move past my oldest son's diagnosis.  Up until that time my life was overwhelmingly focused on checking blood sugars, counting carbs, giving insulin shots, testing for ketones, and wondering if I would walk into a room
and find my son unconscious (those ADA DVDs for type 1 diabetics are more upsetting than helpful).  Preparing for and taking care of a baby actually eased the stress of taking care of my son.

I am still on my homeschooling journey.  However, I hope by trusting God, I will gently guide my children to a lifestyle of loving God and loving learning - my goals from the beginning.