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Monthly Archives: March 2013

Got Milk? Keep it!

As I’ve mentioned before, not only are we battling Type 1 diabetes in our house, but also a food allergy. #1 son is allergic to milk (all milk by-products as well). Aren’t we the fun people to invite for dinner?

We have done a pretty good job of helping #1 son avoid exposure to milk over the last 16 years. We recognized early in his life that he and milk just didn’t get along! At three months, he was in misery after ingesting regular baby formula (he had been on breast milk only up to that time and did seem to have a lot of stomach discomfort even on breast milk–probably because he was being exposed to dairy through me). Switched him to soy formula supplementing breast milk until he was 6 months old at which time he refused to nurse any more. By 9 months, it was time to introduce yogurt–immediately, he had a reaction that included hives and vomiting. Conventional wisdom at the time was that children under 3 could not have allergies, so we were told to try dairy every couple of months or so. And….yep….every test had the same result. In fact he was so sensitive to dairy that if we ate pizza and kissed him, he would get hives in the spot where he had been kissed.

The first two years were rough as we learned through trial and error that many foods you wouldn’t expect to have milk in them actually do. For example, chicken nuggets and hot dogs have been known to include whey (a milk by-product). But by the age of 3, #1 son was able, without prompting, to refuse food people offered unless he checked with me first. And apart from one incident, age 4, when he was accidentally given milk instead of soy milk requring the use of the epi-pen, he has been milk-free for 12 years. Until last Sunday.

We picked up subs from Firehouse Subs, a chain we have frequented before with great success. #1 son always gets a turkey, bacon, mayo sub PLAIN. The same sub he orders at any sub shop.

We brought the subs home and noticed that KC’s sub, ham and cheese only also ordered PLAIN, was not ham and cheese only but loaded with lettuce etc. I was also worried that her BG was joining up after drinking her diet Dr. Pepper from the fancy multi-drink machine, which made me fear that it wasn’t sugar-free at all. So we took her drink away, pulled the lettuce etc. off her sandwich and settled down. #1 son checked his sandwich to make sure there was no cheese on it. And that was that….

1 hour later he came downstairs and at first glance I knew something was wrong. His face was beat red and his eyelids were getting puffy. I went in search of our epi-pens and realized I was wasting valuable time. Gave him benadryl and sent hubby and son off to the ER. They were there in 10 minutes. According to the ER docs, it was a mild to moderate reaction. They did not give him a shot of epi, but instead IV steroids and antihistamines.

In talking to #1 son later, we discovered that he thought the sandwich tasted different, but couldn’t put his finger on it. We believe the worker put peppercorn ranch dressing on the sandwich instead of mayo. #1 son wouldn’t recognize the taste as he had never had ranch dressing before so it just tasted like bad may. KC, who has had ranch dressing, confirmed that her sandwich had ranch dressing on it. #1 son also told me that his first symptoms were 1. that he felt very tired , 2. he started having a hard time breathing so he got down on the floor, and then 3. felt his face and knew something was wrong.

This experience reminded us that we must be vigilant when we eat out. And to keep the Epi-pen where we can find it (and yes, I did find it but glad they headed straight to the ER and giving the Benadryl was the right thing to do)

So here we are 4 days later. #1 son is going on a school trip that will take him out of town for 2 1/2 days….6 meals…..in restaurants. I am sending him with a cooler filled with drinks, turky, almond milk, and mayo packets. His suitcase is stuffed with snack foods, microwave meals, rolls, etc. I know that he is worried and I fear him not eating during the day because he is too afraid, so we’ve discussed that he should pack himself sandwiches.

 

Sending him off is scary…but I know he will be extra-cautious because of this past experience.

 

So a reminder to all:    Food allergies are serious business….people who say they have food allergies are not doing so because they are picky eaters.

This post is dedicated to the memory of Cameron Groezinger-Fitzpatrick , a young man who died from a peanut allergy a little over a week ago.

Practically Perfect In Every Way

For years, I have told KC that like Mary Poppins, she is “practically perfect in every way,” so when my mom suggested seeing the National Tour of the musical “Mary Poppins” the answer was an automatic yes. My mom and KC are both March birthdays-one day apart. And we were able to get tickets to see the matinee on KC’s actual birthday. Woo hoo! A teenager at last! Happy 13th.

About a month before the show, I noticed a Facebook posting by Medtronic announcing that the actress playing Mary Poppins on the tour was Madeline Trumble, JDRF advocate and Type 1 since the age of 4. I thought how amazing this news was…KC is a huge theatre fan (remember acting camp last summer?) plus she loves singing and dancing. What an inspiration for her to see someone succeeding in a something KC loves! I ended up contacting our local JDRF office and asked if they could help set up a meet and greet. They thought it was a terrific idea and started working on it. I didn’t let KC know because I didn’t want her to be disappointed. The “green light” phone call came the afternoon before the performance.

As I watched the performance, my mind was racing. Does she wear a pump? How can she “fly” like that with a pump on? Does she go low or high after a performance? How does her body handle doing two shows some days? And as I read her Playbill bio, I was struck by her thank you to her mom. Yeah, I know, many of the performers thank their parents. BUT….a d-parent knows the struggle that a parent and child with Type 1 go through and the bond forged by that struggle. That “As always-for mom” line was a poignant reminder of that bond. I thought of her mother worrying about this talented young woman whose life is on the road a different city every few days. I thought about my girl and her dreams, ambitions, future. The magic of the show captured my attention and I was able to sit back and enjoy it, although nervously awaiting telling KC about her surprise.   But we kept it a secret from KC…..until the performance was over. We headed to the stage door and word was sent to Maddy that we were there.

Marypoppins1

After a short wait, a lovely, big-eyed young woman shyly greeted us. There she was! Mary Poppins herself! She graciously gave us a tour of her dressing room, backstage and even led us onto the actual stage. Our conversation ranged from the play itself to how she manages her diabetes on the road. We learned that she wears a purple version of the same pump that KC wears. We talked a1cs, and treating lows. We shared stories of pump alarms going off while on stage. We discussed the difficulty of getting good health care on the road. Maddy said that meeting young people with T1 reminds her to take care of herself. We talked about the latest pump technology and cgms. Her mother wants her to get one and she’d never seen one in person. So KC let her check hers out. We reminded her that if a 13 year old can do it, so can she! Even if the needles are scary big!

It was a meeting that reminded me that KC will have a life of her own, out of my control, as it should be.

And in the words of one of the songs from the musical:

Anything can happen if you let it
Sometimes things are difficult but you can bet it
Doesn’t have to be so

Changes can be made

You can move a mountain if you use a larger spade

Anything can happen, it’s a marvel

You can be a butterfly

Or just stay larval

Stretch your mind beyond fantastic
Dreams are made of strong elastic

Take some sound advice and don’t forget it

Anything can happen if you let it

I wonder…

Anything can happen if you let it

You won’t know a challenge until you’ve met it

No one does it for you

No one but yourself
Vacillating violets get left up on the shelf
Anything can happen, just imagine

That should be epitaph
I wear the badge in
Honour of this world’s free thinkers

Those who see beyond their blinkers

Jelly isn’t jelly

‘Til you set it
Anything can happen if you let it

Anything can happen if you let it
What good is a whistle

Unless you whet it

Broaden your horizons

Open different doors

You may find a you there that you never knew was yours

Anything can happen

Raise the curtain
Things you though impossible

Will soon seem certain

Thought at first it may sound clownish
See the world more upside-downish
Turn it on its head then pirouette it

Anything can happen if you let it

If you reach for the stars
All you get are the stars
But we’ve found a whole new spin
If you reach for the heavens
You get the stars thrown in

Anything can happen if you let it
Life is out there waiting so go and get it
Grab it by the collar, seize it by the scruff
Once you’ve started living life you just can’t get enough

Anything can happen, it’s official
You can choose the super or the superficial
Sally forth the way we’re steering
Obstacles start disappearing
Go and chase your dreams you won’t regret it
Anything can happen
(Anything can happen)
Anything can happen

Anything can happen

If you let it

Clearing out the Clutter….or How to Maintain Hope in the Midst of all the Hype?

Today, I am spring cleaning…mopping floors, fluffing pillows etc.

And I am feeling the need to clear my head as well. Yesterday, there was a lot of hype on Facebook about a breakthrough for Type 1 that would/could lead to a cure. I had a feeling that it was regarding a news story I heard a week or so ago about islet transplantation. And it was. Great news that progress is being made in improving the ability to transplant islet cells. I am all in favor of research.

But…

transplantation is not a cure. It is like saying that “chemo and radiation are a cure for cancer.” They aren’t. They kill the cancer cells and may or may not prevent you from getting cancer again. A cure would be that cancer, as a disease could be prevented from happening in the first place.

We need to start looking at all the “diabetes news” clutter out there and sorting it into appropriate boxes: management, treatment, cure

  • Management: any new technology for pumps, cgms,ways to deliver insulin (which includes the Artificial Pancreas), meters, test strips including “apps” and software that help with the day to day job of managing the disease

 

  • Treatment: Insulin

yep, that’s it…insulin

Okay, I’ll throw pancreas transplant in here and islet transplant as well

 

  • Cure:

 

 

 

Hmmm,  the Cure box is empty.  Surprise, Surprise (sarcasm intended).

But there are researchers working on a cure.  Dr. Faustman’s study of reversing Type 1 diabetes is promising. or maybe the answer will be  Cardiff University’s Type 1 vaccine.  And there is the gene therapy study being done at the University of Barcelona.  These are just of few of the research projects that are working toward a CURE…not management, not treatment, but at CURE that will eradicate Type 1 and prevent future generations from getting it.

Yes, I love new management products and always want to be one of the first to try them out to help make my daughter’s management of this disease easier UNTIL a cure…not instead of a cure.

And I know that we need lots of options for management, treatment and cures; not every option will work for every person with Type 1.

Whew!  Ok.  One more thing before I get back to my physical spring cleaning.  Find a Type 1 charity that shares your priorities and do everything you can to help the process.  Some of us will have one pet foundation; others will work for as many as physically possible.  Just get out there and take an active part if helping find better management tools, more treatment options and as many potential cures as possible.  We can help by raising awareness about T1.  We can help by talking to our pump/cgm manufacturers and letting them know what will really make daily life better.  We can help by participating in clinical trials. And, I know you don’t want to hear it, but we can help by raising money.   ( Sorry Nike for stealing this but)  “Just Do It”  whatever you can do to help.