Honeymoon schmoneymoon

IMG_1094When Caleb was diagnosed, we were told he would have to wait at least six months for an insulin pump.  We were told insurance would not cover it until we could show that injections weren’t working. I have since heard that some doctors will not prescribe a pump until a year after diagnosis because they prefer their patients not start until the honeymoon is over.

The good news is, Caleb did not have to wait to start pumping.  He had his first Pod on about 3 months after diagnosis.  The not so good news is that the first year and a half of pumping was a struggle.  Well, diabetes is always a challenge.  We still struggle. But for that first year and a half, stress and confusion were abundant.

I attribute this to a few factors:

(1) achieving tight control of a diabetic’s blood sugar is plain and simply hard and I was new at it,

(2) there is little in life that I haven’t been able to conquer that I really wanted to and for a long time I believed I could achieve consistently good BGs simply by putting in time and effort,

(3) using only fast acting insulin is a very different and more sensitive therapy than one with a longer acting insulin which seems to soak up  some of the “extra” variables, and

(4) we were managing insulin dosing with an erratic, fickle pancreas that produced some level of insulin without rhyme or reason and without notice, aka: the honeymoon.

Caleb’s honeymoon and its subsequent deterioration has never been medically tested. However, over time, I saw gradual changes in two areas.  His overall dosing would creep up and plateau and creep up and plateau.  Each time it flattened out, I would say, “Okay, the honeymoon is over”, only to be proven wrong and go through it all over again.  The other thing that changed was the reaction Caleb’s BG had to various foods. Every once in a while a food that never before posed any issue would cause erratic blood sugar readings. When first diagnosed, there were no problem foods at all.  Even pasta and pizza were just like everything else.  Pasta was the first to cause problems.  Then gradually pizza and chinese food joined the mix.  I would get the dosing down for them, only for it to change.  Then anything processed or fried started to wreak havoc.  Chicken fingers and fries became cursed foods.  Later ice cream and others.

Nights were by far the hardest with which to deal.  Between the hours of 8PM and midnight, Caleb’s insulin dosing was anyone’s guess.  We would go through periods of dinners of protein and veggies for weeks in order to figure out his basal pattern, to no avail.  His insulin needs would go up, up, up then down, down down. Up and down; high and low.  I had different spreadsheets for his basals, his carbs, his BGs.  I tracked his corrections and treatments.  I mapped his dosing and BGs by hour for any “challenging” food every time he ate it.  I even had a legend detailing various foods and their dosing “exceptions”.  I am a finance person.  I am accustomed to trends and analyses.  If I analyzed this long enough, and in enough detail, I would solve this puzzle. Or so I thought.

Then, when I thought it could not get any worse or more erratic, the bottom fell out.  Over just a few months, his basal TDD went from three units to six and then eight.  The breakfasts of oatmeal or Costco bagels that had been such friendly alternatives were now added to “the list” of foods.  All the rules had changed and things had to be relearned.  It was like going through diagnosis or pump start all over again.

Initially, each time Caleb took what I call another “step” out of the honeymoon, I would feel sad.  I would think his pancreas had completely failed and I mourned for it.  Of course, I was always wrong, and it would take another, albeit smaller, gasp for life and peter on.  We went through this so many times, that by the time it did go completely kaput, nearly two years after diagnosis, I was relieved.  With so many variables to manage when caring for someone living with diabetes, I was happy that the unpredictabilities a schizophrenic pancreas pose were no longer among them.

So perhaps, for some, it is wise to wait a year after diagnosis before pumping.  However, despite the grief I believe it posed for us, I am still pleased with our decision to start pumping quickly and would do it all over again.

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12 Replies to “Honeymoon schmoneymoon”

  1. Thanks very much for sharing your story on WordPress. Our 5-year-old Elijah was diagnosed last month. Here’s the beginning of his story:
    http://elijahsjourney.wordpress.com/
    We are just getting started, but your blog lets us know we’re not alone. Thanks for the encouragement that comes from your story.

  2. I always found the term ‘honeymoon’ period to be perhaps not the best description of what is probably the most difficult time(just after diagnosis) To me a honeymoon is one of the most special times in your life!
    Aleksi was diagnosed almost 2 years ago and is still in the ‘remission’ or honeymoon phase – for me the worst bit is waiting for it to finish, tomorrow, next month, next year – who knows? We are using a regime of injections which is working well(at the moment!) I’m starting to read up about pumps as I know soon the day will come when he says a definite ‘no’ to yet another injection!
    Hi to Caleb!

  3. Thank you for posting Caleb`s story, it has been very helpful to me. He is such a sweet kid…when I saw the video you made for the Omnipod contest it made me cry. I was diagnosed a couple months ago and I am considering getting Omnipod when it gets available in Europe. Knowing that even little kids like Caleb are comfortable with the Pod, I can`t wait to try it myself. When you wrote about the inconvenience of precise mealtimes when being on insuline pens, I knew exactly what you`re talking about. It`s a pain in the neck to have to eat during classes at school and not to be able to have ice-cream with friends just because it`s not time for a snack. Being on a pump solves this kind of problems I guess, and many more. I keep my fingers crossed for Caleb to continue being happy and have a well-compensated diabetes 🙂

  4. hi,

    my son Ali has type 1 diabetes since 5 months and he is in honeymoon period. i know that the period changes person to person but can i learn when did Caleb’s honeymoon finish? and does life change a lot after the honeymoon? because now my son takes less insulin units, and the glucose levels do not surprise us and does not go beyond 180.

    thank you, and big kisses to Caleb

    1. Yes it definitely does vary from person to person. As I understand it, how quickly diagnosis is “caught” and how tight BG levels are kept post diagnosis has a lot of bearing on the length. I think Caleb’s was about one year and 8 months long. However, his insulin needs gradually increased over this period. So he would take “steps” out of the honeymoon and each time I thought it was over. The reason I think it ended when I do is because there was a lower level of variability of certain things after this point. It seemed as though I was not battling as much with an erratic insulin-producing pancreas. Some things became more complicated, but there was a little more consistency in things. There is never complete consistency with diabetes of course, but there was difference, particularly as it related to foods. Good luck! I saw Ali on your blog – cutie!

  5. Thank you Loraine. As far as I understand, the conditions will definetly change also for us, will get worse 😦 Now, as you also pointed out in your post, for Ali there is no difference between pizza, pasta and bread if they have same grams of carbs. But it is is clear that when the pancreas totally loses its function, the glucose level will react differently to whatever he eats. The fat or something else in a carb will also begin to effect his BG levels. What I can hope is to lenghten his honeymoon period, at least!

    We live in Istanbul and wath Caleb’s video quite often. Ali feels good when he sees Caleb since they are living a sort of same destiny, and does’nt feel lonely.

    Caleb is a really nice boy. His eyes do look different, very lovely.For both Ali and Caleb I hope a good and a healthy future full of love and joy. (and big patience and strength for us:)

    ipek

  6. So glad that you replied to my question in the Omnipod forum and that lead me to your fabulous blog! A year after my daughter’s diagnosis I still worry so much about making her life as full and healthy as it was before diagnosis. The honeymoon is anything but and I think we are finally starting to come out of that period. At the beginning of diagnosis I hoped she would stay in the honeymoon long enough for her to save some beta cells in the miraculous chance that some drug would come along that would regenerate them. Now, I am waiting for the day for them to just stop producing already so that we can get her bg under control without her body sporadically producing insulin… just enough to throw everything out of whack!
    I look forward to following your blog:-)

  7. can you contact me via email, my son was diagnosed with diabetes at age 2, now he’s five and he wants the pump, we saw some of your videos on youtube, and I would love to talk to you. Thanks

  8. Lorraine –
    I saw this post on your sidebar and eagerly clicked on it. It was wonderful to read! This is exactly how I have been feeling and you say it so succinctly. At first the thought of the honeymoon phase ending made me sad, just like you said – her last little pancreatic cells dying away. Now I can’t wait for it! Thanks for sharing.

  9. Thank you so much for posting this cause our honeymoon experience has been exactly as yours was and we are 10 months post diagnosis. This comforts me that I am somehow not doing everything all wrong, cause there are many days I feel like I am. Your blog gives me comfort!

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