Only the Flu?

Logo for the World Diabetes Day

Logo for the World Diabetes Day (Photo credit: Wikipedia)

I am going to post the following information, not to scare anyone, but to share how important the following is and how a simple test can make a huge difference.

In the past 2 weeks I have heard of THREE different children dying because of a missed Type 1 Diabetes diagnosis. Two of those children were infants, one 8 month old and one 10 month old. These children’s parents were told that their child’s symptoms were “the flu” or some other similar malady. There is so much awareness and training for Type 2 diabetes, which is by far more common than Type 1 and comprises about 85-90% of people with diabetes. But type 1 has far more serious consequences if not taken care of immediately when symptoms present. With cold and flu season soon upon us I would like to share with you the common symptoms of type 1 diabetes that often get written off as something non-serious.

1. Frequent urination
2. Excessive thirst
3. Fruity or winelike smelling breath (can also sometimes smell like acetone)
4. Excessive hunger
5. Blurred vision
6. Fatigue/lethargy
7. Vomiting
8. Labored breathing or wheezing
9. Sudden unexplained weight loss

Most of these symptoms are not too worrisome on their own, and most general practitioners are not trained in identifying and treating type 1 diabetes. If your child is experiencing these symptoms and you take them to the dr, ask for them to do a fingerstick to check blood sugar and/or a urine dipstick test to check for sugar or ketones in the urine.

IF these tests are done and the dr thinks it might be diabetes, go to the ER or hospital. As I previously stated, most dr’s are trained in Type 2 Diabetes which doesn’t usually require emergency care at onset because the pancreas is still producing insulin, it just doesn’t use it efficiently. With type 1 diabetes the pancreas does not produce insulin (or not enough) and the body will essentially starve to death because it cannot use the food for fuel and will start breaking down fat stores to function. The byproduct of the body burning fat for fuel are called ketones and they can cause the blood to become acidic (ketoacidosis) Organ damage or failure can result if diabetes is left untreated, especially the kidneys.

Again, I am not sharing any of this to scare anyone, but to encourage parents to ask for a simple test if the dr is not sure if your child’s symptoms are the flu.

Angelina had a cold the week of her diagnosis, she started using the restroom a lot, drinking a lot and complaining of her eyes being blurry. I thought she was dehydrated from being sick. It was 3 days from when that first symptom occurred until I took her to the dr, and I took her because the cold was getting worse instead of better (it ended up being pneumonia), not because of the other symptoms. She spent 4 days in the hospital getting her blood sugar down to normal levels and was in mild diabetic ketoacidosis. She had lost about 5-7 lbs in 2 weeks, and I wrote it off as a growth spurt because she always gets taller before she gains weight.

I have talked to numerous other parent’s in the Type 1 Diabetes community and most of their stories are similar to ours – they thought their child had a UTI, or was dehydrated, or had the flu. They didn’t have diabetes in their family so they never even considered that it could be that. Diabetes isn’t only a familial disease. Only 10-15% of people with type 1 diabetes have a relative with diabetes.

If you would like more information about Type 1 Diabetes you can go the American Diabetes Association (ADA) webpage.  The Juvenile Diabetes Research Foundation (JDRF) also has some good information.  Or, feel free to email me at:  and I will try to help point you in the right direction.

We need to get the word out so kids can stop dying because of a lack of education and awareness.  Type 1 diabetes is a very treatable disease.  It’s not easy, by any means.  But it is treatable, and people with diabetes can and will go on to lead long and fulfilling lives with proper education and treatment.

Too Many Cooks In The Kitchen

I posted awhile back about Angelina’s situation at school.  She started off the year with 2 aides who would be assisting her at lunch, but otherwise would mostly be unavailable unless there was an emergency.  This means that if she goes to the office for an unscheduled check the office manager or secretary get the job of supervising her blood glucose check.   Fine, whatever.  I’m not over the moon about this arrangement and would honestly prefer for her to be able to test independently in the classroom unless something is wrong, in which case the aide would be called to the office if she ever decided she needed to go there outside of lunch time.  I’ve written up her 504 plan just how I want things to be, now it’s just a matter of waiting on the 504 meeting and also getting her doctor to fill her orders out the way I want them.

Anyway, this takes me back to the title.  We have been having problems with too many “helpers” in the office.  Because there are multiple people who may help her throughout the day there is a lot of mis-communication going on and Angelina is getting the short end of the stick in care.   We got her a cell phone a couple of weeks ago, or rather got my mom’s old iPhone 3GS that Angelina has been using as an itouch added to our cell plan so she can now make calls and text without needing wifi.  I have been pushing for this for a while now, especially since her diabetes diagnosis.  I had spoken with the school district nurse and her teacher just before school started to let them know she would have a cell phone to be able to contact me and also to access her carb apps, if needed.  She rides the bus for 45 minutes to an hour in the afternoons and her bus driver is not trained in diabetes.  She is aware of Angelina’s diabetes, but she likely wouldn’t notice anything is wrong until Angelina passed out and ended up on the floor.   So, I like knowing that Ang can call me from the bus if she’s not feeling well.  I also like that she can text me her BG numbers throughout the day and I don’t have to wonder what is going on, since the orders on file at school say they only have to contact me if she is below 70 or over 300.  Her target range is 100-150, so a lot can happen outside of her “happy place” but it was too difficult for them to remember multiple numbers that needed to be addressed and with whom so I agreed that I didn’t need a call unless she was really high or low.

Anyway, back to the cell phone.  I got parental controls put on her line so she can only call or text me or David during the day at school.  I told her I wanted her to text me when she went to the office and unless there was an emergency she was not to have her phone out except in the office to text or call me.  Then a week ago on Thursday I got a call from one of the aides at lunch time that she was in the office and had come in about an hour before complaining of a stomach ache and headache, but the aide was not in the office at the time so someone (I still am not sure who) allowed her to lie down in the clinic.  The aid was calling because Angelina had fallen asleep about 10 minutes prior and wouldn’t wake up.  I asked what her blood sugar was and the aide said she didn’t know because Angelina wouldn’t wake up to check it.  Now, if you’re a d-parent reading this you’ve probably jumped to the same horrifying conclusion that I did that day.  Fortunately, she was not passed out from a low or high blood sugar.  I went up to the school, which is about a 10 minute drive. Angelina was awake at that point, but still had not had her blood sugar checked.   I did a fingerstick – 106.  The aide pulled out the log book to log the number and there in black and white is the number for the hour before -182.

So, my guess was that she didn’t feel well due to a rapidly dropping blood sugar so I had her eat her lunch and hoped that she would feel better.  While she was eating, the aide informed me that the district nurse had been in and had told Angelina that she was not allowed to have her cell phone for anything other than emergencies adn that she was not allowed to text me her numbers.  The aide said that the nurse had said that if I needed to have her numbers at every check that Angelina could use the office phone to call me.  I was a little (okay, a lot) ticked off because 1) I had discussed Angelina having a cell phone with the nurse before school started and we were all on the same page that it was allowed, just not allowed to use it as a toy in class.  2) As a d-mom who is paranoid of any call that comes up as their child’s school I don’t know that I could handle getting multiple calls a day for every BG check, never knowing if it’s just a routine call or if something is actually very wrong.   I much prefer my calls from the school to only be for actual problems, because then I know if they’re calling that it’s a problem and I have a good reason to prepare for the worst.  Angelina ended up coming home with me that day because she was upset over something not diabetes related and needed a mental health afternoon.

Friday she went back to school and things were okay as far as I knew.  Her phone is super old and has been having issues with charging unless the cord is positioned just right and unfortunately I must have bumped it at some point overnight on Thursday (it’s on my bedside table) and Friday morning she had like 5% battery so I didn’t let her take it to school.  Then, about an hour after she got home in the afternoon she said that she was upset because they had a popcorn party in class and she didn’t get to have any.  I am still a little fuzzy on the details, but from what I gathered they were having popcorn and the teacher sent Angelina to the clinic to get her BG checked for the snack and to possibly get insulin.  Her doctor’s orders are a little unclear on this particular thing, I read it as she is allowed to have insulin at lunch AND snack, but the district nurse said it’s lunch only and she can have a snack but it has to be a free snack and they can’t give additional insulin.  So, when she went to the office whoever was in there told her that she couldn’t have popcorn because she couldn’t have more insulin.  No one bothered to call me to ask permission or for instructions on how to handle it.  If they would have I could have easily told them that 1 cup of popcorn is only 5 carbs and doesn’t require insulin if they really couldn’t give any.  And I’m pretty sure that the teacher wasn’t handing out full bags of popcorn to each kid so 1 cup or less would have been close the same portion that everyone else got and no one would have been the wiser.

So, I was steaming mad at this point because Angelina said the “no” came from the district nurse.  I decided to give myself the weekend to calm down so I didn’t fly off the handle in an e-mail or phone call.  By the time Monday morning rolled around I had decided to just contact the principal and make sure they were making arrangements for the 504 meeting I had mentioned wanting in my email to her the week before school started.  I didn’t formally ask for a 504 plan though and hadn’t heard anything so I was not totally surprised when she responded that she didn’t realize that I was asking for one in my previous email, but that she would notify the team and would be in touch.  I figured the best way to get everyone on the same page was to write the book on it and make sure everyone has a copy.  That way when someone decided to not follow the previously agreed on arrangements I would have something to fall back on.

I’ve posted previously about the importance of having a 504 plan and I soon hope to be following my own advice.  Last year we were fortunate to have a great team and only see a few hiccups.  This year it seems we see nothing but hiccups and the occasional day where nothing goes wrong.  It’s really made me kick myself for not pushing for this last year, just so that it would have already been in place now and I maybe would have only had to wait to do a couple revisions, and not try to cover the whole thing while also dealing with people who very obviously are not properly or thoroughly trained and can’t seem to communicate with me, or with each other.

Anyway, on Tuesday I got a call from the district nurse because she happened to be up at the school and in the office when Angelina came in.  It was an early release day, which meant school got out at 12:20 (which is close to Angelina’s normal lunch time).  I had told Angelina that morning that I would feed her lunch when she got home and that she shouldn’t have lunch at school, but she could have a snack out of her box in the office if she wanted at the time her class went to lunch.  Apparently she told the nurse that she wasn’t eating lunch, but that she wanted to “eat what she wanted to eat” and it wasn’t something in the box.  Her blood sugar was only 105, which isn’t low, but is on the lower side of normal for her and required a snack since it would be at least 2 hours until her next meal.  When the nurse tried explaining she couldn’t just eat whatever, Angelina walked out of the office.  The nurse followed her and when Angelina realized she was being followed she took off running down the hall back to her classroom.  I got the phone call after the nurse, the teacher, and also the vice principal had a chat with Angelina.  She did apologize to the nurse for running away once she calmed down, but apparently this is not the first time this year that something similar has happened.

I brought up all the issues from the previous week that I had been told by the aide were the nurse’s directions.  The nurse said that she didn’t know anything about the popcorn, and that she agreed with me that Angelina could have had a small amount without needing the extra insulin.  She also said that she did speak with Angelina about her phone, but it was only to make sure that she knew she was not allowed to use it in class and shouldn’t be showing it around because they were concerned about someone stealing it.  She said that she was actually glad that Angelina had it for the bus and we discussed the limitations of the phones that I had set on it through parental controls.  So, it appeared as if the mis-communication was the aide either not understanding, or relaying faulty information that was quite upsetting, but in reality not at all what was said.

The nurse also didn’t say it in so many words, but I could tell that she was not pleased with the level of understanding the aide displayed (or lacked, which would be more accurate).  She said that they were going to be getting a new adn different aide from another school who would be cross training for Angelina’s school and could possibly be swapped out for the current aide.  She seemed much happier about this and I just decided to do what I’ve been doing – wait and see.  So far, I have not been impressed with any of the aides that supposedly have worked with other students with diabetes because none of them seem to have a clue what is going on.

What I didn’t realize is that the new aide was starting on Wednesday and that the nurse was going to be out for most of the day, leaving Angelina in the care of the new aide.  The nurse called Angelina into the office in the morning to make the introduction and to let Angelina know that she was leaving for the day.  I knew nothing about any of this until later in the day.  I got her lunch time text that said “105”  which was awesome considering she had a bacon, egg and cheese mcgriddle and a hashbrown from McD’s for breakfast as a treat.  I got a text from Angelina at 2:20pm to give me her afternoon blood sugar reading.  The text simply said “516”.  Her blood sugar was 570 at diagnosis, just to give you a comparison of how significant this 516 reading is.  My first thought was “Oh no.  Breakfast spiked really late, and that would explain why she was borderline lower than her range at lunch time.”

Here’s our conversation:

Ang: 516 Wed, 09/11/2013 14:22
What!?!?!? Wed, 09/11/2013 14:22K. Wed, 09/11/2013 14:22Guess breakfast was delayed spike. Didnt think of that shiuld have done dual wave Wed, 09/11/2013 14:23


Can you wash your hands and rechexk to be sure please? Wed, 09/11/2013 14:23Ang:
Doing that already Wed, 09/11/2013 14:23Mom:
K Wed, 09/11/2013 14:24Ang:
It’s 171 and I did correction so I’m having juice and crackers Wed, 09/11/2013 14:26Mom:
Angelina.  You are not supposed to correct in the afternoon.  How much insulin did you have? Wed, 09/11/2013 14:27Ang:

2.15  Wed, 09/11/2013 14:28Which is why I’m having juice and crackers Wed, 09/11/2013 14:28Mom:
Grrr.  Okay.  I’m coming to pick you up
As you can see from the time stamps, I was pretty quick in responding, except her impulse to bolus was faster.  We have been having issues with higher numbers in the afternoons (like 200’s) and they have been working with her because her impulse is to correct it, but nurse interpreted dr’s orders to say that they can only give insulin at lunch.  Apparently, because the new aide was there Angelina suggested that she needed to correct that 516 and the aide said okay.  The problem with this, as I found out later when I picked her up, is that the new aide had not yet READ ANGELINA’S ORDERS and didn’t know that she was not supposed to correct in the afternoon.  And because Angelina is intelligent and most of the time appears to be confident and know what she is supposed to do she just went too fast for the aide to question anything.  And instead of making it clear that she wasn’t sure, she just followed Angelina’s lead and let her bolus herself 2.15 units of insulin before it occurred that hands should be washed and she should retest.  So Angelina ended up consuming 60 carbs worth of cheez-its and juice at 2:30 in the afternoon.  Thankfully she was also quick to get herself some carbs and to let me know what was going on so I could come get her instead of her going on the bus and possibly going low.  Oh, and throughout the whole thing, I never got a phone call, just Angelina’s texts.  She was at 106 two hours later.
However, we saw majorly fluctuating blood sugars the rest of the evening and over night (she was 116 at 10 pm, then 230 at 2am, down to 170 by morning with no correction insulin).  She wasn’t feeling too great in the morning so I decided to keep her home.  It dawned on me that I wasn’t fully comfortable sending her to school anyway after what had happened.  Her numbers kind of yo-yo’d all day and I couldn’t figure out what was going on.  She wasn’t every really high or low, but she would be slightly high, and then in perfect range without us doing any correction or bolus.  And then at dinner she was randomly 377 and hadn’t eaten anything for a few hours.  I thought maybe she had sneaked a snack because she had been bugging me, but she said she didn’t eat or drink anything she shouldn’t.  I found out that she wasn’t lying 2 1/2 hours after dinner when I checked her BG before bed and she was still at 317 after only a 25 carb dinner that she got bolused for plus correction insulin for the 377.  Of course, at this point it was 10:30pm and it was long past her bedtime because she took forever in the shower.  I decided to inspect her site and tubing and discovered what looked like an air bubble near the end of the tubing that connects to the reservoir.  I attempted to prime it out but it didn’t move, plus far less insulin came out of the tube than I was expecting for the amount that I pushed through and I realized that the white spot was not a bubble, but crystallized insulin that was partially blocking the tubing.  Her site seemed fine though so I swapped out her reservoir and tubing, did a correction bolus through the pump and sent her to bed.
But, when I checked her at midnight her blood sugar was up to 353 and I decided to change the site too.  This is the first time we’ve had to do an “emergency” site change in the middle of the night.  She was fast asleep and didn’t even stir when I tried to wake her to let her know I was doing it.  She doesn’t like site changes because it involves getting poked with a needle.  She slept through the whole thing and the next morning she didn’t even realize I had done it since I did the site on the same side of her belly only about 3-4 inches down from the one that I took out.  She and David have both since said that I should start doing all of her site changes while she’s sleeping.  I swear they both don’t want me to ever sleep.
Her blood sugar was still a little high in the morning, but definitely down from where it was the night before.  I was so exhausted and slept through my 3am alarm so didn’t get to check her until around 6:30am and she was 190 something.  She had still only been about an hour out for her correction when I changed her site so I wasn’t able to push more insulin without worrying about her going low in the night.  So, I let her go in late on Friday too and made her some green eggs and ham for breakfast (free food!).  Everything after that was peachy.
Until she lost her iphone at a furniture store today and we still don’t know where it is.  The battery must have died because find my iphone says it’s offline, and when you call it goes straight to voicemail.  I locked it down and put my number to contact if someone finds it, but the furniture store was huge adn she was EVERYWHERE (which is how she lost the phone – she didn’t stay with us so we never noticed if she dropped it or not) and the search we performed did not yield any results.  Hopefully someone will find it tomorrow and give us a call.  We were going to be “upgrading” her to David’s current iphone 4s next week when the new iphone 5s’s come out because we were going to be getting those and giving her David’s old phone so worst case scenario she has no phone for the next week or so.
Good night!
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