What Parents of Kids With Type 1 Diabetes Want You To Know – A Guide

I have put together a short guide of often discussed or addressed issues parents of kids with t1 run into while out and about.  This guide can be shared online or printed and handed out as needed.  I only ask that you please not edit the document without asking first and please do not remove the credits at the bottom of the document.   If you have suggestions as to other items you’d like to see on the guide please feel free to leave a comment.

Here’s a copy to print.  What parents of t1s want you to know It’s in PDF format.  You may need a PDF reader to view the document.  That can be downloaded for free at Adobe.

Here’s a copy to read:

What Parents of Kids with Type 1 Diabetes Want You To Know

A Guide

  1. Type 1 Diabetes is an auto-immune disorder. That means that my child’s immune system attacked the cells in the pancreas that produce insulin. His/Her pancreas no longer makes insulin. Type 1 diabetes is not caused by eating too much sugar, being overweight, being lazy or any other lifestyle choice. The exact cause is not known at this time.

  2. Diet and exercise will not make Type 1 Diabetes go away. The impact diet and exercise has on my child’s health is the same as any other person – with or without diabetes. It will keep them healthy, but they will still require supplemental insulin to survive.

  3. I am not “drugging” my child by giving them insulin. Insulin is a hormone that is made in the beta cells of the pancreas. Every living person without diabetes produces insulin to help their cells absorb glucose to provide the fuel their cells need. Any food that contains carbohydrates break down into glucose in the body and this is what fuels those cells. In a person with Type 1 diabetes their pancreas does not produce insulin, so they require supplemental insulin through injections or an insulin pump for their body to be able to absorb the glucose for fuel.

  4. Without insulin, my child with type 1 diabetes would slowly starve to death, despite eating food. Insulin acts as a “key” to open the cells so they can absorb the glucose in his/her blood. If there is not enough insulin in his/her system those cells will start burning fat for fuel and he/she may develop ketones which are a byproduct of that fat breakdown. Ketones may cause my child’s blood to become acidic and result in a condition called diabetic ketoacidosis (DKA) which may result in a coma or death. Excess ketones, left untreated, can cause severe organ damage or even organ failure, especially in the kidneys. The only way to get rid of ketones is to give insulin. Increasing water consumption or IV fluids can aid in flushing out ketones, but will not get rid of them alone, without insulin.

  5. I will never be as efficient as a pancreas at determining my child’s insulin needs. We do use a formula to decide how much insulin he/she gets throughout the day, but it is a constantly changing formula and it is not always 100% accurate. So many things besides food can effect blood sugar levels, such as exercise, emotions, growth hormones, stress, illness…the list goes on and on. Because of this there will be times, often frequently, that my child’s blood sugar may get too high or drop too low.

  6. In the case of blood sugar levels that are too low my child is at a very immediate risk of seizure, coma or death if the blood sugar level is not addressed immediately. The quickest way to raise a low blood sugar is through very simple carbohydrate sources like fruit juice, candy, glucose tabs, cake icing, regular soda, or table sugar, just to name a few. Basically anything that is “pure sugar” and does not contain any fat or protein, as these may slow the absorption of the carbohydrates and fail to raise the low blood sugar quickly enough. In the event of a low blood sugar episode these items will not harm my child, and in reality may very well save his/her life. These are “emergency” items and go almost everywhere with us.

  7. My child is not on a restricted diet. There is no food that is “off limits” to him/her. My child can eat the foods that he/she has always enjoyed, they just now must be accompanied by insulin to cover the amount of carbohydrates consumed. There is no right or wrong amount of insulin and a greater amount of insulin is not “bad”. Different foods may effect blood sugar levels differently, such as foods that are high in fat and slow digestion.

  8. No, I will not take my child in the restroom to give his/her insulin injection. Public restrooms are germy. If you don’t want to see him/her get a shot, then look away. Be thankful that you don’t require a shot every time you eat something.

  9. There is no such thing as a “good” or “bad” blood sugar number. There is only “in range” “high” or “low”. These numbers are used as a guide to assist in the correct dosing of insulin. They are not a “grade” or a judgment of how “bad” my child’s type 1 diabetes is. If my child has numbers that are consistently out of range then a dosage adjustment may be needed. This may be due to several different factors, most of which have nothing to do with anything that me or my child are doing “right” or “wrong” in regards to diabetes care.

  10. My child is a child first, and there are many times when being a child will come before type 1 diabetes. This doesn’t mean that we are neglecting my child’s health, it simply means there is more to his/her life than type 1 diabetes. Living with a chronic illness can wreak havoc on a child’s emotional health and sometimes being given the chance to just be a kid and not having to worry about diabetes for a few hours is worth it to me, as a parent, as health outcomes are often better when the person is in a better state of mind.

  11. This generation of people with diabetes are not likely to see long-term complications from type 1 diabetes. Telling horror stories about your relative who lost their limb or went blind from diabetes is not helpful to my child, or to me. There have been technological advances in the past decade that have made diabetes management much easier and more precise than in previous generations. Managed properly, people living with type 1 diabetes now have a long life ahead of them. In fact, people with diabetes are currently expected to live an average of 10 years longer than people without diabetes due to being more aware of their health status and are more likely to receive prompt medical care than their non-diabetic peers.

  12. Type 1 Diabetes is a constant roller coaster that we live with every day. Some days are better than others. It takes a lot of patience and understanding to be a parent of a child with Type 1 Diabetes. I try to reserve my patience for my child. That may mean that I don’t have any patience for you right now, which may be why you are reading this guide. Please don’t take it personally. My days are hectic, my nights are hectic and chances are I haven’t gotten enough sleep lately. I’m sure you mean well, but unless I asked for your advice or opinion, please keep it to yourself. I judge myself quite enough every day, I don’t need you to judge me too. I wish I had the time and the energy to educate the entire world about type 1 diabetes, but I don’t. I dislike having to constantly correct people’s misconceptions, especially when they refuse to listen. My child and I are the ones living this life, unless you or your child also have type 1 diabetes, please don’t try to educate me, especially if I haven’t asked you to.

I am planning on possibly updating this periodically and I also have given it it’s own dedicated page on this blog.

See Also: http://blackdogsrule.com/things-i-want-you-to-know-about-type-1-diabetes/


High/Low for Week of…??? Hello? Anyone home?

I’ve been slacking again.  It’s been a busy couple of weeks around here.  Angelina started pumping on July 17 and things went off (mostly) without a hitch.  Actually, pump training went better than I expected and pretty much consisted of a short demonstration of how to fill her pump reservoir and get the pump all set up and ready to connect to her body.  I got my very own site, applied by Ms. Angelina herself.  I volunteered to be the guinea pig, in truth it was so that when I told her “It won’t hurt you” I wouldn’t be totally lying through my teeth and she’d never trust me again.  Truth is though, it didn’t really hurt.  It did, however, make my arm feel very warm for a good 15 minutes after and reminded me of the sensation I felt when I got my ears pierced.  Which, if you think about it, is pretty much the same thing.

The pump trainer took care of setting all the settings as the dr had prescribed them so all I had to do was calm Angelina down and discuss where we were going to put her site.  I voted for her upper tushie since she has more fatty tissue there and I figured it would hurt less.  However, she surprised us all by picking her belly.  And by surprised I mean REALLY surprised, since when she was on shots I’d only been able to talk her into doing a belly injection less than a handful of times.  While I was doing the schmoozing, David was busy filling the reservoir with insulin.  I wiped her chosen site down with skin prep and he popped the mio on and Voila! 20 seconds later she was officially connected to her pump!  I already posted this photo last week, but here it is again for good measure.  We were all a little in awe of the fact that “that was it?”  Really I was thinking “We waited all this time for this?  I could have done this at home by myself.”

2013-07-17 14.35.24

And really, that was it.  We were at the office for maybe an hour and a half.  Most of it was just talking (not even really training, but just making sure we had watched all the videos and asking if we had any questions, etc.) and discussing what kind of barrier wipes we should use since she has eczema.  How to apply the nifty infusion set IV300 tapes.  A brief demonstration of the sure-T infusion sets that our friend was starting out with.  We chose the mio sets since they are the canulla type that don’t require a separate insertion device (that is the one thing our insurance doesn’t pay for).  I didn’t think Angelina would be willing to try a set that the needle stayed in her with, so the mio won.  Sure- T is one of the needle types, which are good if you have teflon allergy or if you end up with a lot of kinked cannulas.  Anyway, I got the mio put in my arm as part of the demonstration but our friend’s daughter decided she just wanted to do the sure-t set on her brand new Lenny the Lion, who comes complete with areas to do infusion sets!

We left shortly after and headed home.  She did complain about the site burning right after we put it in but by the time we were halfway home she said she couldn’t even feel it anymore.  She did start complaining about the IV3000 later when she was chilling on the sofa, so we ended up taking it off.  She was afraid to go to bed with her pump on and asked if she could suspend it for the night.  Which prompted a very serious discussion about how the pump needed to stay on because otherwise she wouldn’t be getting insulin.  I explained it kind of like the pump is now her lantus.  Before she would get a shot of lantus and it would last all day until the next shot, but now she’s not getting lantus and only getting small amounts of humalog instead through her pump.  She was really confused and says “I’m not getting lantus anymore?”   I guess she thought the lantus would be in the pump too.  We put a tegaderm bandage over the site before she went to bed and she opted to clip her pump onto some PJ bottoms.  Everything was fine and in place in the morning and she hasn’t worried much about sleeping with her pump since.

However, on Friday I told her she absolutely needed to bathe because, well, I didn’t remember the last time I made her take a shower was it had been that long.  Was it Monday?  Maybe?  I just knew it hadn’t been since she got her pump hooked up so it had been too long.  She was terrified her site was going to come out in the shower though, so I decided to do a site change and let her hop in the shower after taking out her current site.  I told her she had to be hooked back up within an hour though.  She showered in the record time of 30 minutes, I was amazed.  When she got out I popped her new site in, hooked her up, ate dinner, and she was doing great.

I had noticed she was running a little on the high side since we hooked up to the pump, but we had been told to expect that since they usually liked to set her basal rates a little lower to avoid low blood sugar episodes.  We had just been doing correction boluses as needed (which was pretty much anytime we checked her blood sugar).  We decided to make chocolate covered bananas from a recipe that I saw posted on another D-Mama’s blog: Raising Colorado.  So we ran out to the store for chocolate chips and bananas at 10pm.  Angelina helped by melting the chocolate and kept asking if she could lick the spoon.  Then she says “Mom, I’m shaking.  I think I might be low.”  So we stopped our deliciousness making and checked BG: 60.  So she slurped down a quick juice and was up to 114 just in time to indulge in some seriously sinful desserts.

When I checked her at 2am her bg was a lovely 165.  Of course, in the middle of the night she moved herself out to couch and when I checked on her in the morning she was all wrapped up in her tubing and her site looked like it had pulled out, but her BG was hanging out in the high 100’s until later that afternoon so I figured she was fine.  She was responding to boluses so we just left it alone.  Sunday morning however, she went from 208 at 7:30, to 227 at 11:30, to 335 at 2:30, even after correction at the earlier checks and it wasn’t food related since the 335 was right before lunch.  So we decided to pull the site since we were on the way to spend the evening at Six Flags.  Of course, we were already on our way there when that happened because she had refused to change the site at home before we left just in case the site was fine.  We got her hooked up, bolused for lunch and went.  At 4:30 she was still hanging around 330, which meant that the site was working, at least, but she wasn’t coming down.  She was 316 at 6pm and we decided to head home.  She was really cranky and it was hot and very busy at the park.  WE have season passes and live only an hour away so it wasn’t a huge loss.  We went on one ride in the two hours we were there.

She did start coming down and was in the mid 200’s by the time we got home and 195 at bedtime a few hours later.  Then her numbers just kind of bounced around in the 200’s and 300’s for the next couple of days, even after a slight basal increase on Monday.  The correction boluses that we were doing just didn’t seem to bring her down much, just slightly prevented her from going up higher.  Tuesday she had a couple excursions into the mid 400’s.  Throughout all of this she was constantly complaining of being hungry and she was just very cranky and difficult to deal with.  Thankfully no ketones, so I knew she was getting at least SOME insulin, just very obviously not ENOUGH insulin.

Wednesday she was mostly in the mid 200’s again.  We did site change, again with no issues.  That was the first site that actually made it to 3 days.  There was no rash or irritation, although I did hurt her a little taking it out because it was REALLY stuck and I accidentally pulled the canulla out sideways when I was trying to lift the adhesive with a unisolve wipe so I didn’t rip her skin off.

We saw her endo yesterday (Thursday, July 25th) and explained that she had just been running way too high so she cranked her basal rates up and adjusted her sensitivity (correction factor) as well.  She was actually back in the 100’s last night and overnight, and I was really happy.  Then she managed to spike a 406 this afternoon, but I think the culprit was a sugary nescafe latte mix that she just had to have a couple hours before.  We did a correction and she was down to 250 within an hour and 95 an hour after that (and some play time at the park).   I guess we’ll have to wait and see if we get nice numbers again tonight.  Her 3 overnight checks last night were her first in-range numbers since that 114 last Friday night, that was actually a recovery from a low.

Oh, and there was this:

Ang Pump BG's

One of the things that was the most frustrating is I just felt like we were on our own.  I had gotten the impression that we were supposed to contact our pump trainer for adjustments but every time I reached out it seemed like she didn’t return my calls, or if she did she didn’t really DO anything.  It didn’t even occur to me to email the endo, and I knew she was only in the office where we see her on Thursdays.  Since Angelina started pumping on a Wednesday and that Thursday was okay and the following Thursday was her appointment I didn’t see the point of calling the office.  I think I learned my lesson though.  But I also learned that the dr gave the pump trainer the okay to make adjustments because she joined us at Angelina’s appointment.  Things are so far, so good though.  Fingers crossed.

Angelina’s Diabetes Summer 2014 Fundraiser

I have set up a fundraising site to raise money for Angelina to go to diabetes camp next summer.  I am also trying to raise money for us to attend the Children with Diabetes Friends For Life conference next July in Orlando, FL.   If you are able, please consider donating.  Or passing our info along to those who may be interested in helping.

 Angelina’s Diabetes Summer 2014.

Pump Training

So, it’s Wednesday.  Just a quick update to say that we are heading to pump training soon.  I am so excited.  I could not sleep last night and ended up giving up around 6am (after going to bed at 1am) and realizing I was not going to fall back asleep.  David said I’m like a kid on Christmas.  That’s not far from the truth.  And, as counterintuitive as it may seem, I seem to absorb information better when I am slightly overtired.  Maybe just because my brain processes are down a few notches from their normal manic/ADHD state, lol.  Fingers crossed all goes well this afternoon.  Will update tomorrow on my high/low post (if not before!)

High/Low Week of July 4, 2013

Hi there! Welcome back! It’s Thursday, so time to share our high/low for the past week.

It’s been an interesting week since I last checked in.  We decided to go to Ikea on Friday even though I was expecting the phone call from our Medtronic rep.  I figured anything we needed to talk about I could talk about anywhere, I do have a cell phone.  It’s even smart sometimes, lol.  So I brought this pack of papers and training booklets with us, just in case we needed to go over anything in them while on the phone.  And then it came time for the call at 3pm so I started to head for the front door of Ikea, only to realize that my phone had 4% battery left!  So I stole borrowed David’s phone.  When the rep called I told her I needed to call her back from a different phone because mine was dying.  I didn’t have her contact information so I quickly dialed her number into David’s phone along with her 5-digit extension.  Well, I got a lovely message that they were currently experiencing issues with their phone system and it disconnected.  So, here I am, sitting on the lip of a planter outside Ikea and I have no idea how to call her back!  The phone didn’t show what extension I had dialed, only the toll-free number.  Luckily, my phone was still holding on so I quickly got into my e-mail and called the shipping rep I had spoken with when we first ordered the pump and asked if he could find out our local reps extension, all I had to go on was her first name though.  Of course, I didn’t just simply ask, I went into a whole drawn out explanation of the events leading to me calling him.  I think he must have felt sorry for me so he said he would find out and call me back in 5 minutes.  Meanwhile, David and Angelina had come out of Ikea looking for me and we decided to head back to the car int he parking garage up the block.  We got in the car and I plugged my phone into my car charger just in case the rep decided to try to call me back when she didn’t hear right back from me.

Instead, David’s phone rang and it was her.  Oh, happy day!  Apparently the shipping rep had IM’d her and gave her David’s number to call me back at.  Things were fairly smooth from there, except I had mistakenly thought she said we would be scheduling our pump training during that phone call.  Instead, she was asking me a bunch of questions to see if we were ready for her to put us in contact with the pump trainer who would then schedule the training.  At that point she gave the impression that we would hear from the pump trainer at the beginning of this week, so on Wednesday when we still hadn’t heard anything I was pretty ticked off.  Not only did we NOT do training this week, we hadn’t even heard from the trainer to schedule it!

To further aggravate my frustration level one of my fellow T1 moms from a local group I belong to posted about how her daughter had been to their endo that morning and had put in her order for her medtronic pump and they had training set up at their dr’s office for next week.  I think I went a little crazy at that moment.  Not at the mom, who I consider a friend, but the fact that “WHY CAN’T OUR PROCESS GO SO SMOOTHLY AND QUICKLY!?!?!”  Did none of these people realize how absolutely terrible things have gotten in our house?  Did I not sound pathetic enough whining about all of the issues Angelina is having (and in turn I am having because I don’t deal well with this kind of stress)?  Of course, the people at Medtronic know none of this.  And I haven’t said as much because I’m sure they don’t care, not really.  And it’s not their fault that I am a little manic about everything and can’t stand not being the one in control of everything.  Limbo is KILLING me.  Instead I have been stewing inside my head because I am powerless and I can’t stand it!

Meanwhile, Angelina has gotten worse this week.  The level of her meltdowns and shut downs over shots and D care have stayed about the same, but in a lovely (note sarcasm) twist her level of opposition and defiance is through the roof.  Did I mention she has oppositional defiant disorder?  Yeah, well , it’s evident this week.  We have been fighting with her about cleaning her room.  We were anticipating the pump trainer doing in-home training which means my house needed a major cleaning.  I have been doing a lot of my own cleaning (my dining room table is currently pushed into the living room because I’ve been meaning to steam mop the floor for 2 days) and Angelina’s only responsibility is picking up her room.  She has been doing every possible thing she can to NOT clean, even though she was pretty much on restriction until it got done.  So, she goes in her room and just sits or lays around and does absolutely nothing.  And every time I tell her she needs to be cleaning her response is “I don’t want to” with a huge attitude, and one day she even did this hands-on-the-hips-sticking-her-tongue-out thing that really just pissed me off.  I’m supposed to have at least 3 more years before she is a teenager, where is this major attitude coming from!?!?  David finally had enough of it last night when she smarted off to him about it and he gave her a spanking.  Her room got cleaned (for the most part) within 2 hours, minus sweeping – which I helped her with this afternoon.  However, she has just been pushing the boundary line about everything she possibly can, and I’m not sure if it’s D related and a control thing, or if it’s hormones, or if it’s just her being a little snot because she can and I’m totally effed in a couple years when she’s actually a teenager.

We went and ran some errands this afternoon and she had gotten this whistle toy thing in a Happy Meal (I know, fast food is bad) and we had to run into the bank and she insisted that she had to bring the toy in with her.  I wasn’t terribly opposed to it coming inside but I told her she better not blow it while we were inside.  Then I decided to make a pit stop at the dollar tree next door and she pretty much had the toy in her mouth blowing on it every 2 minutes.  Finally, I told her that I had told her not to blow it inside.  To which she replied “No, you only said I couldn’t blow it in the bank.”  And I told her she can’t blow it in the store either, and if she blew on it again I would take it away and throw it in the trash.  Not 30 seconds later she’s got it in her mouth again. Of course, it was quieter, but still in her mouth and making noise.  I told her to give it to me and she refused and said “I’m doing it QUIETLY, Mom!”  Because, of course, it doesn’t matter that I said NOT AT ALL, it only matters that Angelina is going to do what Angelina wants to do and everyone else be damned.  I took it away.  She pouted the rest of the time we were in the store.  When we left the bank she said “I hated that toy anyway.”  Anyone want a kid? J/k.

High?  After my near meltdown yesterday about not having heard from the pump trainer yet my friend who is getting trained next week passed along the trainers email address to me, so I was able to shoot her an email and tell her that we were ready and available and that I had done all the pre-training stuff and want to do training ASAP.  Like, last week.  Seriously, we could have done training last week and I would have been happy.  Well, after I sent the email my friend said that she talked to the person who is doing their training through their dr’s office and she had mentioned that we were still waiting and wondered if we could do training with them next week.  The person training them said it would probably be fine and she would speak to the person who was supposed to be training us to let her know.  I got an email this morning from the person who was to be training us, and she pretty much made it sound like they had been trying to coordinate this all along.  Which I am pretty sure isnt’ the case, since we go to a different dr’s office and as far as I know neither of them even knew that my friend and I knew each other.  But, whatever, the end result was that we are doing training next Wednesday, and we’re doing it with my friend and her daughter, who is 2 years younger than Angelina, which works out perfectly because Angelina’s not usually on the same level as people her own age.  She’s great with older kids because she is intellectually gifted, but she is socially immature so she gets along well with younger kids.  Most kids her own age don’t get her at all, either because she seems younger than them, or isn’t into the same things that they are.  Or because she’s smarter than them so she gets picked on for being different (not to mention that she is different because of her medical issues) because they can be intimidated by her intelligence.   I’m not saying she’s the smartest possible 9 year old, but her being smarter than her classmates  is something that was flat out told to us by her teacher at a previous parent-teacher conference when we were discussing issues Angelina was having at school.  There was a while there where I was worried that she might have Asperger’s because of her level of social unawareness, but she just doesn’t meet a lot of the diagnostic criteria, and she is super extroverted and uses sarcasm quite flawlessly (at times) which are some things I’ve learned you don’t generally see with kids that have ASDs.  We’ll just say she’s eccentric.

Anyway, tangent.  TL;DR – Frustrated, meltdown, craziness waiting around to set up training.  End result: frustrated, meltdown, crazy mom was a squeaky wheel and got the grease (aka: pump training scheduled).

I’m thinking about writing a book about Angelina’s life so far.  Would you read it?