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T1 Playdate (Wordless Wednesday)

One going up, one going down, both digging away on a cool, cloudy day!

Letter to Kindergarten Teacher

I can’t claim credit for this – a parent in a Facebook group shared a version with me, which I pounced on for its casual, non-confrontational yet firm tone. Here’s my version to Luke’s kindergarten teacher – passing on, since I found the general content such a great jumping off point. Very thankful for all the documents, posts, and support floating around online!

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Hi XXX,

My name is Kristin Fitzpatrick, and my husband is Erik Bergman. Our son Lukas will be in your class this year. His friend Luna was in your class last year and loved it – Luke can’t wait, and we’re very happy he’s going to Lowell!

Luke has two common medical conditions I wanted to give you some basic information about, although I’ll be working closely with Sandi and Diane on management. The conditions are Type 1 diabetes (also known as juvenile or insulin-dependent diabetes) and a peanut allergy. Please read this email, and if you have 10 minutes, watch this quick video. It’s about another Luke, but it gives a great overview of what life with Type 1 is like, especially for a small child:

When Luke was just 14 months old, we took him to Children’s ER, where he was diagnosed with Type 1 Diabetes (like the Luke in the video, he almost didn’t make it). Unlike the much more common Type 2 (adult onset) diabetes, Type 1 is not linked to diet or lifestyle – it’s an autoimmune disease like MS, lupus, or rheumatoid arthritis. It’s not contagious, can’t be outgrown, and there is no cure. We don’t know why, but Luke’s body decided his pancreas is the enemy and attacked it, killing off the part that makes insulin.

Why this is important: we need insulin to get energy from food. Without it, the body can’t process sugar. Sugar accumulates in the blood, and the body tries to flush it out in urine (Luke drinks lots of water and pees a lot when blood sugar is high), but the body needs insulin to bring blood sugar back down. High blood sugar can make a person really sick within just a couple hours and is fatal after a day or two. It also causes long-term complications (damage to nerves, eyes, kidneys).

Luke’s body also can’t stop blood sugar from going dangerously low, which is why he needs to drink juice or eat something sweet immediately when blood sugar goes low. Left untreated, low blood sugar can cause unconsciousness, seizure, coma, or death. We’ve never had these severe symptoms, so I don’t want to scare you into thinking this is a common occurrence – just want to be clear about why low blood sugar has to be dealt with immediately, not in 15 or 30 minutes.

Luke wears an insulin pump and uses a “Dex” blood sugar monitor to help keep us his blood sugar in a safe range. His pump is a “pod” that looks like a little computer mouse. He wears it on his butt or lower back, and it gives him insulin through a tiny tube through the skin. His “Dex” looks like an iPod and sounds alarms when blood sugar is too high or low, and it reads sugar from a sensor on his arm that looks like a nicotine patch. (We get some interesting comments from people!)

Blood sugar is always on the move – think a roller coaster of highs and lows. While our bodies handle that automatically, Luke’s doesn’t without help. He will sometimes have high or low blood sugar that can make him feel really crummy, change his behavior, and affect his ability to concentrate. We try really, really hard to keep blood sugar in a good range, but since 60+ factors can change it (activity, emotions, weather changes…seriously!), the reality is that there will always be highs/lows when Luke needs the nurse. I realize this interrupts class, but Sandi will come to the class to take care of blood sugar, which should help.

  • Luke’s Dex will usually alarm for low/high blood sugar, and Luke will often say when he thinks blood sugar is low/high, or he may say things like:
    “I’m really thirsty!” or “I’m really hungry!” Generic, I know, but he never says this unless it’s related to blood sugar.
  • “I’m really tired.”
  • “I feel sick.” Or “My stomach hurts.”
  • “My pod is loose.” (This means he might not be getting insulin from it, which will cause high blood sugar.)
  • “My Dex beeped/buzzed!” (His blood sugar monitor has just sounded a high/low alarm.)

Please take Luke seriously when he says these things. He knows that the classroom is busy, that you have a lot to do, and he’s not one to complain unless something is really wrong.

Sometimes he won’t know that blood sugar is off, or his Dex monitor won’t detect it (it’s great but not perfect). If you notice any of these symptoms, please call the nurse immediately:

  • Thirst or hunger (esp. at odd times, like right after lunch or first thing in the morning). Sounds generic, but Luke never complains about these things unless they’re related to blood sugar.
  • Glazed eyes, pale skin,
  • Inability to concentrate or listen, being “spacy,”
  • Manic behavior – If he’s out of control, it’s a flag for seriously low blood sugar. He can be energetic like any boy, but the only time he is completely manic is when blood sugar is low and dropping fast. If you can’t reach the nurse for any reason at a time like this, make him drink a juice box right away!We’ll work with the nurse on a 504 plan (diabetes is considered a disability), but we need you to call her when you see these signs, because high/low blood sugar can turn life-threatening very quickly. If you can’t reach a nurse and suspect low blood sugar, please just give him juice immediately (I’ll provide a small box of juice and snacks).

    About the peanut allergy – to keep Luke safe, please give him snacks, treats, etc. ONLY from the box of food I’ll provide or from the nurse’s office. It’s crazy how many processed foods are made on equipment shared with peanuts – jelly beans, ice cream, cheese crackers, you name it. Luke’s had a moderate reaction to peanuts, and every exposure to even a trace of peanuts increases the likelihood that his next reaction will be life-threatening, so (unfortunately) we need to be incredibly careful.

    About snacks/treats/candy/birthdays: Luke can have the treats (from his box), but he always needs insulin for them. He cannot eat anything without the nurse giving the appropriate insulin for the food, or he will become very sick from high blood sugar. This is all REALLY important information to leave for a sub – the horror stories I’ve heard shake me to my core.

    Bottom line – he’s a great kid with a busted pancreas and over-active immune system. :) We just need you to know the score and be open to being partners in a successful year. We appreciate all you do and value education enormously. Do let us know at any point what we can do to support you concerning Luke specifically or the class in general. We want him to be treated like any other kid (aside from the medical), and I’m sure this will all move to the background as the year goes on.

    If you don’t mind writing me back quickly just to acknowledge that you received this, I would really appreciate it. Please feel free to reach out to me any time with questions, concerns, or suggestions at XXX or this email.

    Thanks, and looking forward to next week -

    Kristin

Carb Bombs Away! (Wordless Wednesday)

Our “lows” box, high on a shelf – where carbs wait until deployed.Carb Bomb

Taking Animus, Omnipod, and the Dex to Hawaii

The first time we went to Hawaii (and surfed with a tiger shark), Luke was using the Animus. Despite qualms about taking a $5k piece of medical equipment through sand and salt water, we decided to go for it. Animus has a great loaner program, so we got a backup pump before we left, along with a protective film for the display. Still a little hesitant, we tried disconnecting at the beach, so Luke wasn’t the only kid wearing a jet pack on his back. But even with reconnecting to give a basal + correction bolus every hour, blood sugar went high. Pulling him aside to reconnect so frequently was annoying as well, so we swallowed hard, tucked the pump into a pocket on his rash guard, and turned him loose. And you know – it was fine. We did extra checks for sand around the cartridge cap and sets, but we checked the tubing for bubbles every night anyhow.

WP_000296 Ah, the tubing. We were happy to be rid of it when we went to Kauai this year with Luke on the Omnipod. This would be much easier, we assumed. No tubing hanging out the back of Luke’s swimsuit, no bubbles, no sandy sets. We had form factor on our side.
But the pods’ adhesive seemed to dissolve on contact with salt water. Pods barely last half a day, and we were rapidly running through the extras. We tried a tip from other parents: put down a layer of waterproof Tagaderm, put the pod on top, and tape over with extra Tagaderm. No luck – pods still fell off. Under all the Tagaderm, we could see the pod detached and sliding around. I turned to the Facebook hive mind and got more suggestions: vet wrap or Bands for Life, Matisol, Mefix, Opsite, Nexcare waterproof or 3M micropore tape, and Extra Large Waterproof Band Aids.
With just a few days left, we decided to do our usual drill (SkinTac, pod, Tagaderm over the top), with one addition: we wiped SkinTac on top of the pod’s adhesive pad so it was thoroughly soaked and couldn’t take on water. We let it dry (one parent suggested letting each layer dry thoroughly), covered with Tagaderm, and that did the trick! We got a couple days out of each pod (just enough to get us home).

The darling Dex did much better. Its adhesive stayed put the entire week with a little extra Tagaderm, and the G4′s longer range let us leave it in the backpack (we used to carry the 7+ with us in a waterproof bag). We swagged insulin and treats between regular tests, and did ok except for the occasional shave ice or pineapple juice. (A friend coined the term “carbument” after seeing our intense discussion about how many carbs were in a massive puka dog bun. Vacation, people!)
Watch out for military interference, though. We took a catamaran tour along the jaw-dropping Na Pali coast, where we passed a military base that does next-gen Star Wars missile testing and apparently jams equipment that comes into range. Although the Dex was a few inches away from Luke, it lost contact as we passed by the base. A truck with flashing lights drove parallel to our boat – “If you’re taking pictures of them, they’re taking pictures of you!” the captain cheerily announced. DSC02790

If you go to Kauai, wild chickens will be shadowing your every step as well. The 1992 Hurricane Iniki let lose chickens and fighting cocks, and now they are the local answer to city pigeons. As we sat in a drive-through to order chicken McNuggets, we saw a mother hen bedded down with her chicks by the loudspeaker.
“See any irony in this?” Erik asked.
“Don’t let Luke in on the joke,” I said. “Chicken nuggets are way too easy on blood sugar.”

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