Introduction - me and Tyler

Type 1 and LADA Parents of Children with Type 1 Diabetes
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Hey Everyone!

I mentioned in another post last night that I’m new here and I’ve already received a number of warm welcomes! I just saw this forum pop-up and I thought… well… it must be appropriate then for me to make a more formal introduction. :wink:

I’m a 32-year-old professional computer geek - married - with two wonderful boys. One of my boys (Tyler) was recently (last April) diagnosed with Type 1.

Here is the note I sent-out to my co-workers and friends about him at that time:

I just had a pretty amazing weekend involving my son Tyler.

Tyler is my 3.5-year-old energetic, adorable, and ostentatious second child. For about a week he had been having increasing trouble with frequent urination and accidents. He’d been potty trained for a few months now so it seemed unusual to us that he would start having accidents again but several people have told us over time that kids that age do “regress” every now and then so we just sort-of dealt with it as it came up. The problem began to increase in severity towards the end of last week though and we noticed he was drinking a lot more water as well. It reached a point Friday night where he was waking up in the night and crying as he ran to the bathroom because he had to go so badly… this also being a first for Tyler.

Interestingly though Tyler was acting just fine otherwise… playing normally, energetic, eating, etc… Doctors often told us when we were new parents that “sick kids act sick”… Tyler was not acting sick. Heather and I discussed the issue Saturday morning and we decided that I would call my friend the Emergency Room PA for some quick advice. We thought maybe he had a bladder infection or urinary infection. Steve (my friend) instead offered that we could come into the hospital where he was working on Saturday and he’d get us into a room for a quick free pee test without having to register or wait, etc… Who knew that doctors could do this for friends and family?

So early Saturday afternoon we brought Tyler in and after 30 minutes we coaxed and tricked him into peeing in a cup. He really thought this was odd since he was quite sure he’s supposed to only pee in a toilet. My friend Steve took the test away expecting to find what we suggested but came back a few minutes later in an entirely different mood. It seems Tyler was free from signs of infection but that there was so much glucose in his urine that it was off the scale. Steve being my friend and also brilliant in knowing me took the time to explain how the test strip turned “dark brown” – the darkest color on the spectrum for this test – almost immediately on contact with the sample… a test that usually takes a few minutes to develop. He then explained that this means it’s extremely likely Tyler is a Type 1 Diabetic and currently way too high on his blood sugar levels. He made sure I understood that I needed to immediately get him into his suggestions of either Children’s Hospital or Presbyterian / St. Luke’s (his two favorite choices always for pediatric care).

Upset and in slight denial I decided we would take him to the North Satellite of Children’s Hospital at Highway 7 and I-25 so he could get in quickly (as they are new and never busy) and get a blood test right away without paying as much or waiting for an emergency room admittance at Children’s in Aurora. In retrospect I think it may have been wiser just to take him directly to the main Children’s.

They got him in right away – I think he was one of only two patients in the entire ER of that facility on Saturday. Much to his objection they took his finger prick test immediately and he scored completely off the scale of that test equipment. They tested again a few more times. All the while Tyler was acting pretty normally for Tyler… hanging out, watching TV, talking to us…. Scared certainly but reasonably well.

What followed after that was a very difficult process of trying to get an IV into a 3-year-old and several more serious blood tests requiring more blood. They took his samples off to their lab immediately and they wouldn’t actually tell us what his score was except to say “way over 600”.

He was pretty-much checked on every 2-3 mins by what I think was every doctor and nurse in the facility while the three of us really just sat and watched cartoons and all the doctors decided what they were going to do. Ultimately they decided to send him in an ambulance to the main branch of Children’s Hospital.

At one point my wife went out of the room to make a call and overheard a doctor yelling at the ambulance company about Tyler along the lines of “You need to get here now, this child should not be alive.” This making her very uncomfortable she retreated to the room and didn’t tell me about it until much later.

By this time it had been explained to us that Tyler is definitely a Type 1 (Juvenile) Diabetic. The people there were very nice and took a lot of time to talk to us and explain what the plan was, etc…

So we took an ambulance ride down to Aurora to the very impressive new facility for Children’s Hospital where he was given further treatment and observation. With some insulin and careful care by about midnight they had his blood sugar down to around 150 and we were sent safely home for the night on the grounds that we would return Sunday morning at 10am for an emergency appointment at the Barbara Davis center.

http://www.uchsc.edu/misc/diabetes/

Which I now understand is a globally known facility for the study and assistance of Juvenile Diabetes… very cool. They opened-up just for us Sunday morning with a single doctor and nurse and taught us how to administer tests, shots, and much more. His blood sugar test Sunday morning started again at 455… a little scary but he had just eaten a very large amount for breakfast. Before we left the Barbara Davis center it was under 250… and just before Dinner last night he was right at 150.

For a child of his age/size it’s considered completely safe for him to be between 80 and 200 and they actually want to keep him higher than lower as going too low is far more dangerous. Non-diabetic adults are better between 80 and 120.

On Tuesday we’ll return for a full day of testing, training, and education… then again in another week or two. Every morning we are to page the endocrinologist doctor who met us today (a very nice and very smart man) and talk to him about Tyler’s most recent tests and what doses we’re to give him when and of what types of insulin.

So I have a beautiful young boy… who should not have lived… but lived just fine… who happens to have Type 1 Diabetes. Of course he doesn’t like getting his sugar checked and of course he doesn’t like getting shots. I know Tyler and I know he’ll get used to it. He is a tough little boy. He’s mostly scared at this point I think because the IV process Saturday night was so traumatic… it really was. I think 3 is probably a great age to begin a new lifestyle and accept it as the “new normal”. Probably much better than 12 or 18.

How do you explain to a 3-year-old that he now has to have at least 4 blood tests a day and at least 4 shots a day from now… (forever?). He doesn’t understand - but I think he’s young enough that as it becomes a regular part of his life that he will learn to accept it as my wife and I certainly must. We have been telling him that his “blood is sick”. This seems to make some sense to him. He knows what blood is and he knows what sick is.

Heather (my wife) has done better with this than I have. I had to leave the room Saturday night after one of the attempts to get an IV in and call my friend our church’s main Pastor… I was really losing it. He prayed with me on the phone right then and promised to rouse a few others for us… my wife of course had made a few calls as well. We were very scared.

I don’t want to get too faith-ey on you but I truly believe that we have witnessed God’s Grace and Love. There’s no logical reason Tyler should have lived… and there is particularly no reason he should have been completely just fine. I enjoyed playing and wrestling with him last night before bed quite a bit more than ever before.

I am so undeserving… and so blessed.

Heather took these photos of Tyler’s Ambulance ride using her cell phone… my brave little boy with the puppy they gave him:
6849-n1435309572_322029_7381017.jpg (44.9 KB)
6850-n1435309572_322030_6812894.jpg (41.9 KB)

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we subsequently learned that Tyler was actually well over 1000

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All I can say is GOD IS!!!

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Your faith will help through! Got a suggestion here about checking his BG how about you and your wife do it too maybe if he sees you guys doing it he will be more prone to do it. Back in the 70’s when I took Type 1 my parents helped me by doing the old fasion urine tests with me.

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That’s a great idea… but actually he’s great at taking tests now. The only thing Tyler protests anymore are infusion set changes for his pump - and even that has improved dramatically since July.

but yeah - if I tell Tyler I need to test him now he walks right over and sticks his hand out for me. We always let him pick which hand and which finger. He even does it for me in his sleep (poor guy)! He can literally roll over in his sleep and stick his arm and hand out for me. We’ve gotten quite good at it. :wink:

It’s been quite a year for us actually that God has carried us through.

Two weeks before Tyler was diagnosed - my wife and I filed Chpt 7 Bankruptcy because of the job loss I’d experienced the year prior (I’m employed now). Two weeks after - we decided to move into our rental house (where we live now) because we surrendered our owned/mortgaged home in the bankruptcy and didn’t feel right about staying there.

This October my wife (who has Rheumatoid Arthritis and has to take immuno-suppressive drugs for that disease) came down with H1N1 about a week after I had it and recovered from it. She did not recover but instead developed a very acute and aggressive staph pneumonia. The Pneumonia progressed over about 12 hours and quickly turned into a complication called ARDS (Acute Respiratory Distress Syndrome) leaving her in the ICU barely clinging to life and unconscious for over 3.5 weeks and me alone to parent Tyler and his brother, take care of my wife, and everything else. Heather died 3 times during her “trials” and was successfully revived each time, although one time only barely and after nearly an hour.

After she finally began to recover and awoke - her recovery accelerated to unprecedented rates. She spent 4 weeks in a rehab hospital and then got to come home a week ago Tuesday.

By yet another miracle in this same year of 2009… I have my wife who is mostly unharmed and on her way to recovery (she still can’t take stairs and has to carry oxygen around with her, but who cares!!!) and my son who was principle in my “saving” only 4 years ago at our church (another long story).

So it’s been quiet a year…

I heard on Wednesday that my Dad has late stage colon cancer…

My time isn’t “over” yet… I don’t know what God is preparing me for, but it must be something amazing.

God is Love.

Thank you for being a great community much like the TRUE Church that Jesus spoke about – to help my wife and I with our son - I know we will become good friends with many of you.

-Chris

P.S. You can read about the story of my wife’s journey here if you’re interested, there are parts about Tyler too: www.caringbridge.org/visit/heatherott

click on “journal” and start at the beginning

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Hi Chris,
I believe he watches after us. A quick story. Not feeling good, tried, dehydrated, going to the bathroom A LOT! and etc… I went outside to smoke and while there, I asked for a little help, as I was feeling so bad. Next thing a thought pops into my head!! It was very clear “Check your blood sugar” Well I did and a few hours later in ICU, they told me I was type 1. Thank You Lord!!! Oh by the way, juvenile diabetes is the old name because of people like me. I was 52 when dx’ed aug./08

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My endo told me that autoimmune diseases run in families, so your wife has RA and your son is a T1. Have you checked for other autoimmune diseases in your relatives?

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Hi, Chris,
Welcome to TuDiabetes! I’m sorry to hear about the tough year you’ve been through with your family. We can certainly sympathize to that! I’m glad your son is doing so well and that you wife is on the mend.
When Elisabeth was diagnosed, she had been in a bad state for over a week, but we had all of our friends and church prayer band praying…I know it will the Lord keeping her as well. It’s a nightmare I’ll never forget, but thank God for prayer! There have also been many close calls when something told me to go and check her and she was very Low or very High. I know the Lord is watching over her and helping me as her mother. Psalm 121 is one of my favorite scriptures for Elisabeth, surely the God of Israel has watched over her and kept her time and time again.
Have you ever tried checking you son’s BG on his toes? Elisabeth prefers her toes and has only started doing her fingers…it gives you more to rotate amongst if your son is agreeable.
Blessings to your family~

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Your little boy is here for a reason…to live, laugh and love. What strength you and your wife have, I wish you and your family a wonderful life together.

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Chris, I can relate to a lot of your story. I was diagnosed at age 10 and all the docs said that five more minutes would have been too long to act - that I amazingly made it out alive. I remember what it was like as the paramedic cried trying to find a vein in my arm for the IV. He had found out my dad was a paramedic and kept saying it was “a brother’s kid” and I had to make it.

I just want you to know that 20 years later, I’m healthy and happy. I wish the same for your little guy. hug

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it’s really a remarkable thing actually… Tyler marks a clear trend in my wife’s family. My wife’s grandfather had RA, my mother-in-law is Type 1, my wife has RA, and my son is Type 1.

You almost might think “we should have known”… but we didn’t.

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thanks everyone for the warmth, truth, and love! :slight_smile:

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For infusion site changes that are totally painless, I use Emla cream. I recently went to a dermatologist and asked him if there was any harm in using it long term, and he said no, not even for children. I’ve been using it for 10 years, and I don’t feel a thing when I change my set. You just have to put it on an hour before you are changing, which sometimes is not practical, but I use it for 90% of my changes.

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WOW! Sounds like you’ve had a year! Yes Gos is love! And another thing here He works in mestorious ways! You know that he doesn’t over fee; your plate too? Your strong enough to get through all this! YOU GO!!

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I developed T1 55 years ago when I was 4. Unfortunately back then most doctors were clueless about childhood diabetes (and pretty much diabetes in general). Several times when my mother took me back and forth to the doctor, even though I was obviously getting sicker and sicker, the doctor kept denying that I could be a diabetic ( my mother had suggested the possibility to him) fortunately for me when I was really really sick, a different doctor was covering who diagnosed me over the phone and met us at the emergency room, I was immediately put on insulin and in a couple of days transferred to the Joslin in Boston (it was in a Brownstone at the time). I then lived the next 30 plus years with a couple of BG reading a year. (Sure makes you laugh when people say that they can’t live with less than 10 to 25 readings a day) I don’t know how many of us survived. I was on MM pumps for 10 years and now have now the OmniPod for 4 plus years. If my child was a T1 I would get them on the OmniPod sooner rather than later. Painless, no tubing , autoprime, pods will be 40% smaller this year. Great for kids, adults too. Makes being diabetic so easy. Andy

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Thanks Andy!!

We did consider the OmniPod but ultimately it wasn’t covered by Kasier at all and we really liked the remote control fuctions of the Animas Ping. Kaiser does cover the Ping. There were other considerations for my son too such as the only place we can find a “fatty enough” site is still on his butt. He’s a remarkably fit and muscular 4-year-old! When he’s bigger and can reliably use his abdomen - we’ll probably reconsider the OmniPod. By then they’ll be much smaller and better too I bet!

It shouldn’t be about the money - but when you just filed ch7 Bankruptcy, all your accounts are empty, you can’t even afford food often enough… you’re going to do whatever you can within whatever means you can.

With Kaiser, the Ping cost us around $1,000. Some amazing friends of ours held a huge multi-day garage sale in secret (without us knowing) using some of the stuff from our old house that we had to surrender in bankruptcy and much of their own stuff. They raised almost $900 of the $1,000 we needed for the pump for us and gave it ALL to us. At the garage sale they told people about Tyler and his diabetes, etc… (all this was before my wife’s hospital experience too) and many people shopping gave $5’s and $10’s for $0.50 items. Pretty awesome!

Without Kaiser the ping would have cost around $7,000. I’m sure the OmniPod system would have been as much if not more.

Checking your BG TWICE A YEAR? Unbelievable. It really is a miracle that you lived. I can see why the mortality rate for Typ1 used to be so much higher… it doesn’t take long to figure that out!

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I was diagnosed a couple of months before my 4th birthday. I used to wear sunglasses for my blood tests and shots because it made it hard for me to see what was going on but I could still see. Also my family would call me a movie star and I thought the attention was pretty cool. Your son will grow up to have a wonderful “normal” life and diabetes will just be a part of it.

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God is Truly amazing!!! Chris, God is using you and your family in a powerful way. Your testimonies and your faith about His goodness and grace will help so many!! He is holding your family up, helping you soar through your trials: Your story brings tears of happiness to my eyes and shouts of “hallelujah” to my lips… He has remarkable plans for you!!!

God Bless you, my brother
Brunetta

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WOW! Your story sounds so much like my year has gone!! I know how tough it is trying to keep your head above water when things keep happening. I have had a heck-ov-a-year myself - just ask most anyone who has been following my saga. You may want to check my home page out…although it is not totally updated!

Keep the faith and plugging on!

Lois La Rose
Milwaukee, WI