‘Round Here

School is in full swing, homework is in full swing, and something in the air is making all the local kids have low blood sugars. Except for Angelina. Of course, that could be because her numbers have been higher than they should be lately. Last night she was actually in range, before and after dinner, and woke up with a 103 blood sugar this morning! Her morning numbers have actually been decent lately and I think her overnight basals are about perfect for her. But, she has been waking up 150’s-160’s and I remember when she was on Lantus the dr saying that she likes to see between 85-120 for morning checks. Of course, that was on Lantus. Now we just want her to be in range. In range is 100-150 for her. The past couple of days have been almost… pleasant? I don’t want to get too comfortable with that, because it’s weird for us. Not necessarily her diabetes, but just in general. There seems to always be some kind of turmoil boiling around here. Whether it is her diabetes, or her attitude issues, problems with homework (she actually did her homework on the bus home the other day and was done by the time she got home!), problems with MY attitude clashing with HER attitude, something. Something is always WRONG. So it feels WRONG for things to be going smoothly.

On the other hand, David is working like 1,398,475 hours again. It’s end of quarter and we never see him the entire month of end of quarter at his job. He worked 97 hours the week Angelina was diagnosed in March. And that was the last week of March, and all of those weeks were pretty similar. He didn’t really get to be trained when I did, or every talk to the doctors, or really experience any of it. But he still made that effort to head straight to the hospital after working a 12 (or more) hour day. Never mind that he was falling asleep and only would stay about an hour so I could get a short break.  He was still there, even though he wasn’t.

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Somebody had a birthday!

Angelina is 10 years old as of 8:43pm EST Aug 22, 2013.

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Here’s how the day went:

Went to the school at lunch time only to find out there will actually be two aides who will be taking turns helping Ang in the clinic. Normally, the more the merrier, but with Ang and her specific case I do not like not having just ONE person who is in charge of things at the school. I think having 2 people will likely lead to some confusion, and possibly a delay in treatment if they have to scramble to figure out who to call to come to her in an emergency since neither of the aides full time job is in the clinic. They are both aides helping other disabled or special needs kids in their classrooms and are pulled out if/when Ang comes to the office. I’m very frustrated about this situation because IF there is an emergency with her every second counts and precious minutes could be wasted while office staff try to figure out who to call and the amount of time it takes for that person to respond and get there. Both aides are in classrooms literally across the school from where Angelina’s classroom is, and the office is halfway between both.

I was able to get the living room and kitchen cleaned in the afternoon after picking up her cake (which was beautifully done and she loved it!). David got home around 4:30, so only 30 minutes later than planned, but he bought her a rose bouquet on his way home so I think that makes up for it. She decided she wanted to order pizza in for dinner and we ate around 5:45pm. Pizza is a particularly hard food to dose insulin for because of the very high fat content it has a nasty habit of being slow to digest which means that it usually really effects blood sugars a while after her insulin has already done it’s job. She decided to only eat 1 piece though so that definitely helped. 

She loved her presents, most of them she already knew about or helped pick out, so I did have a couple surprises in there, including the movie “Epic” which I picked up when I got her cake. She got Minecraft (game) on her phone and got pretty absorbed in that most of the night. I asked her what she wanted to do and did we want to do some family time but she was content playing her game so we just all had a low key kind of night. After cupcakes we put on her new movie and when it was over it was time for bed. There was no fighting/bickering. The only thing that even stands out is she insisted on lighting the candles on her cake and kept holding the match/candle downward and burning her finger and getting wax everywhere so David started to help by lighting candles on the other side and she had a mini-fit about it but recovered quickly and was happy again. 

Now for the technical stuff about how things went with her diabetes:
I checked her blood sugar shortly after David got home and she was around 250, her target range being 100-150, so we did a correction to get her closer to target before we even ordered the pizza. By the time we got the pizza and went to eat she was around 175, which is not a bad starting point. At 2 hours post-pizza she was 213 and we went ahead and did cupcakes. She got insulin for 1 cupcake and then a separate dose with her 2nd cupcake and a glass of milk. The second dose we did as a “dual wave” which means she got a small amount up front (since she already had some insulin going to cover the first cupcake and what was left of the pizza) and the rest of her dose slowly over 3 hours to help combat the likely spike from fat content. That was around 8:00. I checked her at 11:30 again, 30 minutes after the insulin dose was done and she was 201 with a small amount of insulin that was still working. This morning she woke up at 162, which is pretty close to her target range and is a perfectly acceptable number to me.

Here is how a type 1 diabetic celebrates their birthday: The same as anyone else – with CAKE!!!   And a side of glucose meter and insulin.

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First Day of the 5th Grade

It went…  Angelina just got home and she said it was great!  She likes her teacher, which is a blessing.  And even better – NO HOMEWORK!  Not even paperwork for Mom to fill out.

My first day of school on the other hand… Well, it wasn’t so great.  It wasn’t BAD, per se.  But not great.

We’ll start out with the fact that there were MAJOR staff changes from last year.  The only person that’s the same is the district nurse, who isn’t even at the school unless there’s a problem.  She oversees the medically needy kids at 6 different schools in our district and is in charge of making sure the proper plans and supports are in place and helping with training or issues for the school site health techs (which may or may not be actual nurses).  We have a new principal, new office manager and a new…aide.  She doesn’t even get an actual full-time health tech this year apparently.  The person that was assigned to the school is a para who is there to help with 2 disabled kids in AM kindergarten. Oh, and if Ang happens to come into the office and her blood sugar is out of range, she’s supposed to get a call to come to the office to help.  #$%^&*  I was not happy about this when I found out yesterday, but I try to be open minded, and really, Ang is an expert at checking her own blood sugar.  And if the office staff are also trained to help her/supervise (they weren’t last year) then that means more eyes on her, right?  Except that when there isn’t one full-time person assigned to the task of caring for someone with medical issues that person has a greater likelihood of slipping through the cracks behind choruses of “I thought you were taking care of it.”  “No, I am pretty sure you were supposed to take care of it.” All ending, of course, with her not getting the timely treatment she needs because the left hand doesn’t know what the right hand is doing.  Of course, that’s worst case scenario, but I think any D-Mama must be lying if she said she didn’t ever think about things like that happening.

So, that stress I knew about yesterday.  The principal seemed very nice and very informed.  She said she had t1 students at her previous school and seemed to know quite a lot for someone who wouldn’t have been involved with day to day care.  Unfortunately she won’t be the person involved with Angelina’s day to day care either.  The new office manager seems very stressed out, but enthusiastic, so I think she will be an ally.  I can’t imagine it’s easy being the new person in charge of everything on the first day of school.

So, the aide.  Well, I was hoping for the best because when I spoke with DN (district nurse) yesterday she said that even though the new aide wasn’t going to be in the clinic all day, that she would be available to come if Ang came in.  She told me that the aide had been assisting another t1 student (with a pump) at a different school for the past few years, and that student had graduated to middle school this year, which is why she was placed at our school.  So, that sounded promising.  Or at least not terrible, since we lost the fabulous nurse we had last year.

And then, this morning when I went in to have a brief meeting with everyone the new aide was not there and I was informed that she doesn’t start until 8:30.  School starts at 8:35, Ang gets there around 8:20 if she rides the bus.  I tell myself it’s not a big deal, because she will have just eaten breakfast before leaving the house and I would know what her BG is and she normally wouldn’t get checked between breakfast and lunch anyway unless she didn’t feel good.  So, I was asked to come back at lunch to teach them how to use Ang’s pump.  This is something different because last year after diagnosis she was still on shots.  She just started pumping in mid-July.  The DN and I agreed to meet at the school at 11:45, since Ang’s lunch is at 12 and that would give us a few minutes to get introductions out of the way and things settled before Ang came in for her check.  Well…  I get there at 11:45 and neither the DN or the aide are in the office.  So I stand around waiting and writing some info in the packet of papers that I brought with me about how to use the pump.  A lady walks in the office and sees that one of the papers has a glucose meter picture on it.  She asks if I’m there about diabetes.  I said I was a parent and that yes, my daughter had diabetes.  I asked if she was the new health tech.  She said no, but that the aide had sent her to find out what time she was supposed to be in the office for Angelina’s lunch, because she didn’t know what time her lunch was.  All I can say is that I’m glad it wasn’t  last year, because her lunch was at 11:40 and she would have missed it.  Did I mention that AM Kindergarten is in session until 11:55?

Anyway, a few minutes later this lady walks into the office eating something that smelled like nuts out of a ziploc baggie, kind of looks at me and says, “Are you the mom of the diabetic?”  I said “I’m Angelina’s mom.”  She said “Oh, hi, I’m L.  I’m going to be the one checking your daughter’s blood sugars.”  Right off the bat this sends off TONS of red flags.  She then goes on to tell me she’s SO hungry because she didn’t get a break and didn’t get to eat breakfast and that was what she was eating.  I asked if it had nuts in it and she said it’s cereal.  I said “Oh, that’s good.  It smelled like nuts and Angelina has a severe nut allergy.”  She then decided that she needed her water and she said she was going back to the classroom since no one else was there yet.  While she was gone the nurse finally showed up and heads into the clinic (which is really just a little 10X10 room with a bunch of filing cabinets, a counter and some cupboards and a sick bed in it).  I asked about the aide because the name she had given me was different than what the nurse had told me yesterday.  She then told me there was a last minute change and this aide was NOT the person who had been overseeing the other kid with diabetes at the other school.  Joy.  Angelina is a few seconds behind her and starts unpacking her lunch to add up her carbs.  Meanwhile, the aide is not back yet and Ang already figured up her carbs and is ready to go.

The aide finally shows up (really she was gone maybe 5 minutes, but in an emergency those 5 minutes can be critical – just goes to show that either the classroom is clear across campus, or she wasn’t in a hurry) and Ang gets out her meter and checks herself and pulls out her pump and starts putting in her carbs, etc.  I was just like “Whoa! Hold on!  We have to teach them how to use your pump because they are going to have to know how to do it.”  Ang was very anxious to go and was getting very frustrated.  So, I quickly walked the aide and nurse through the steps to bolus.  This was difficult because the aide had left her reading glasses in the classroom and couldn’t see the pump screen.  So we convinced ANg that she could unhook and go to lunch and the nurse would return her pump to her when we were done.

While the aide was gone getting her glasses the DN told me that we might be getting a different aide/health tech because they are still moving people around and had some new people enroll in the past 2 days that require an aide.  Also, the 2 kids in the kindergarten class were requiring more care than originally thought and the current aide wasn’t able to easily and quickly get to the clinic if Ang came in during the time that AM kindergarten was in session.  That’s not even mentioning what would happen if the aide happened to not be in the classroom if Ang needed her.

The aide came back with her glasses and I quickly went over walking her through using the bolus wizard and it made me very glad that I had printed out the cheat sheet instructions that we got for pump training.  Then we all went over the dr’s orders and what to give her for lows, etc.  The aide didn’t know the difference between fast-acting and slow-acting carbs for low blood sugars which made me super happy that I decided to separate her snacks and label each container with detailed instructions on when/how much to give for certain blood sugar ranges.  I had mostly done that for the office staff on the off chance that one of them needed to treat her.

Going over the dr’s orders she didn’t understand when she was supposed to check for ketones, even though the nurse had just explained that it was for blood sugars over 300.  Then we talked about how Angelina had hypo unawareness under the 60-80 range and that last year many lows were found just because she came in to check for her end of the day check, but felt fine.  Then we got into the end of the day check.  School ends at 2:45.  Angelina rides the bus and in the afternoon is the last stop, so she is on the bus for an hour. (I mentioned in a previous post how the sub health tech last year neglected to call me for end of the day lows and allowed her to get on the bus without rechecking her a couple times.  This is a big reason behind me pushing for a t1 504 plan this year. )  So the nurse told the aide that Angelina should come in about 2:40 to check her BG.  The aide just looked at her and said “I leave at 2:30, can she come in at 2:25?”  The nurse agreed that was fine.

Of course I interjected with that was fine as long as her BG was fine, but if she was low she needed to be treated adn rechecked.  The aide says “Well, I can just recheck her before I leave.”   Which, you know, is FIVE minutes later and not nearly enough time for a BG to come up, and that’s if she were even able to have checked and eaten a snack in that 5 minute period.  However, coming in to check sooner may or may not work because a lot can change in 45 minutes, as all t1 parents know.  So I just said “She can come in at 2:20.  If she’s low, treat her and call me and I will come up to get her.  I don’t want her to ride the bus if she’s possibly low anyway.”  It really sounded like the aide was just going to give her a juice box and leave her there to her own devices.  Fortunately we have not experienced it first hand, but I know it’s not uncommon for stubborn lows to not come up right away.  Or to come up some and then fall within a short amount of time again – which would likely be right in the middle of her bus ride.

I don’t WANT to have to pick her up every time she has a low. 1. because for some weird reason she likes riding the bus. 2. because in most cases her BG WILL come up and stay up with a 15 g snack, followed by a BG check to ensure she’s over 70 and an additional long-acting snack.  But if the aide isn’t going to stick around long enough to make sure that her BG came up and stayed that way I’m more comfortable knowing that someone (Me, in this case.) actually is concerned about what is going on with her and making sure she’s not crashing hardcore.

I feel… cheated.  We had a fabulous nurse last year who was only assigned to her school when she was diagnosed with T1 in March.  The nurse was actually an RN, since in CA only RN’s can give insulin injections and Angelina was newly diagnosed so not always injecting on her own.  Aside from being an RN, the nurse last year also had a dad with t1, and a friend with a pump and she and Angelina shared a love for Hello Kitty.  For me, well, she was great about calling me and letting me know what was going on.  She also worked at least 8-3 so she was there as long as Angelina was and never said anything about needing to leave if she had to wait a few minutes at the end of the day to treat a low or have me come pick up. (We live across town from the school, it’s about a 10 min drive).

I know it’s not fair to whine about how much this new arrangement sucks compared to last year.  But, it sucks.  David says I am overreacting and everything will be fine.  But I can’t help think that things will be fine… until they’re not.  And I’d rather have all the bases covered BEFORE something happens.  I don’t want something to happen to Ang before the school/district treat this as seriously as I do.  There’s a very good reason that I carry an epi-pen and a glucagon kit just about every where with us – insurance.  We’ve never had to use either, thankfully, but that doesn’t mean that I get to stop carrying them just because nothing has happened yet.  And I would rather have a plan in place and someone who is willing and able to put aside their own agenda to care for her even when it seems like she is doing okay.  Because it would only take ONE time of things NOT being okay.

The Dreaded First Contact

I’m not talking about the Sci-Fi even either.  I am talking about that internal dialogue questioning whether I should reach out to the new school principal before school starts, or just wait until the first day of school to try to get all of Ang’s STUFF in order with the school.

I decided to send an email.  Now I feel like I’m one of those parents… and I want there to be an un-send button like there used to be in AOL.

Here’s my e-mail:

Hello Ms. Principal,
I just wanted to reach out and introduce myself.  My name is Jessica and my daughter, Angelina will be a 5th grade GATE student at this year.  Angelina was diagnosed with Type 1 Diabetes in March, and I know last year she was the only student at with diabetes.  I wanted to see if it would be possible for you and I to meet sometime before classes start next week to discuss Angelina.  Last year we worked closely with the district nurse, Ms. Blue Eyes, to set up Angelina’s medical plan and I was mostly pleased with the level of care that Angelina received.  However, there were some issues that were not covered by her medical plan and I would like to discuss updating her existing 504 plan to include accommodations for her diabetes.  I also would like to be allowed to offer training and/or education to any staff members that are willing to learn about Angelina’s diabetes and keep an eye on her around campus.
In addition to diabetes, Angelina also has ADHD, asthma, anxiety and allergies.  The start of the school year is usually very difficult for her and now with the added stress of diabetes I am hoping that you, her teacher and I can work together to ensure as smooth a start to this school year as possible.
I will hopefully be up at the school either Monday or Tuesday next week to meet with the nurse and health tech and I would like to introduce myself in person if you have a few moments to spare.  In the meantime, if you would like to get in touch with me you can email me, or my telephone number is:XXX-XXX-XXXX, please feel free to call anytime after 9 a.m.
Thank you,
Jessica <neurotic mom>
Maybe it’s just the fact that I am, indeed, quite neurotic, but I don’t recognize myself in this email. Who is this calm, gracious person?  And really, let’s start off the new school year by basically telling the new principal ‘I am going to be a pain in your neck.  My kid is going to be a pain in your neck.’  Really what I am thinking is “I want to tell you exactly what I want for my child and I want you to say ‘Yes, Mrs. Neurotic.  Anything you say, Mrs. Neurotic.”   I’m having major flashbacks of last year before diabetes when the entire first month of school Angelina and I did nothing but fight over her homework, and her teacher didn’t return any of my notes or emails about how we could work together to help Angelina.  And now – DIABETES!  If I make it through the next few weeks without biting anyone’s head off from stress it’s going to be a miracle!
Also, please see my recent post about 504 plans.  I am totally kicking myself about not insisting on updating hers last year right after her T1 diagnosis.  Because, if I had, right now I would be a little less stressed because I would know there was at least a working plan in place that might just need a little tweaking to reflect changes that occurred over the summer (like being on a pump now, instead of shots).  It helps nothing at all that at the end of last year our district nurse told me to contact her a couple weeks before school started.  So I sent her an email the first week of August, only to get no response.  I left a voice mail earlier this week, that also went un-returned.  Digging further into the district website I find the employee calendar that shows the nurses aren’t back in the office until next Monday, two days before school starts.  Almost her entire medical plan and diabetes care has changed over the summer, so most of her medical plan is going to have to be re-written before she can go to school.  I have a feeling I might be attending the fifth grade for at least a day next week.
Please pray for me.

She Can’t Eat That…She Has Diabetes!

Ever heard this said about your child?  I have.  Usually it’s coming from someone who is stuffing themself with the same item my daughter may be enjoying at the time.  Things like chips, ice cream, cake, pie, candy.  But the fact of the matter is, she CAN eat it.  The difference is that whatever she eats, she has to get insulin from an outside source to use the food for fuel, unlike someone without diabetes whose body does all that fancy calculating and insulin administration all on it’s own.

Of course, for someone with a functioning pancreas the process is much more precise and streamlined.  They probably have no clue what’s going on inside their own body.  I read somewhere recently that a normally functioning pancreas starts releasing insulin as soon as you see or smell food in anticipation of you eating food.  And there’s a built in safety mechanism if insulin is released, but then you don’t eat so your blood sugar starts going low – your pancreas releases glucagon to signal your liver to release some extra glucose into your blood stream to counteract the insulin.

For someone with type 1 diabetes their insulin comes from a syringe, insulin pen, or insulin pump.  As a parent, I will never be as efficient or as exact at dosing Angelina’s insulin as her own pancreas was.  I can give her insulin, but it won’t always be at the right time, or the right dose, and even rarely both.  But I can give it to her and I can try my hardest to mimic a functioning pancreas.  So, if she wants ice cream, she can have it, just like anyone else.  It just means that it comes with a dose of insulin from outside her body.  You telling me that my child can’t eat something while I am trying to figure out how much insulin to give her just makes my job harder.  Maybe I should start telling your pancreas YOU can’t eat that.

For more information please see points 5, 7 and 12 on the post linked below.

 

EDIT:  So, I was reading over at Death of a Pancreas and noticed that the author is the person who made this gem:     Since a very special line from this video was repeated multiple times in our home after watching this video and was part of the inspiration for this post I thought it only proper to share it here.  The line?  “There are only two things my daughter cannot eat.  Poison.  And cookies…   Made with poison.”  Fitting.

Do You Have A Section 504 Plan? If Not, Maybe You Should Get One.

It’s that time of year again.  Preparing to send the kids off to school for a new year.  That means new teachers, new pencils, new books and… a new diabetes toolkit.

The DOC (Diabetes Online Community) is all abuzz about what to include in their children’t toolkits.  Will the school allow them to carry lancets and syringes, or will they consider those weapons and require they be locked in the nurse’s office?  Do they have a 504 plan?  Is the school allowing your child a 504 plan?  Do you even know what a 504 plan is, or if your type 1 child needs it?  If your answer to any of these questions is ‘no’ – pay attention.  While the first question may be negotiable, the others are not.  If your child attends public school, or private school that receives ANY federal funding (In the U.S., of course) you child is ENTITLED to a 504 plan for their, and the school’s, protection.  A 504 plan is a legally binding document that the parameters are agreed upon by the parent/guardian and school personnel to provide accommodations for a child with a medical disability.  Type 1 Diabetes is a listed condition, your child automatically qualifies, regardless of what the school says when you ask for one.  It doesn’t matter what state you live in either, Section 504 is a federal law that supersedes any state and local laws.

A 504 plan for Type 1 Diabetes will generally accompany a DMMP, Individual Health Plan, or “Doctor’s Orders”, this is the form that your child’s endocrinologist submits to the school with specific directions of how to manage your child’s diabetes at school.  It seems many schools will tell a parent they don’t “need” a 504 plan because they can just use the child’s DMMP to provide care and accommodations, and will work with the parent to provide additional care that the parent may request.  However, the “trap” that many people fall victim to (myself included) is that the DMMP and a verbal agreement with the parent isn’t a legally binding document.  Which means that the school can tell you they will do things the way you ask, but if someone drops the ball or simply chooses not to follow that agreement, you have little to no legal recourse if something were to go wrong.

No one wants to think about the “what if’s”, especially at school.  I think we all want to believe that our child’s school has their best interest at heart.  And in some cases, it may seem that way.  Now, I’m not advocating that everyone go out and demand a 504 plan and then threaten to sue the school the first time they miss a scheduled BG check and your child is fine.  I’m just saying that the 504 provides that protection because the school knows that IF they don’t follow it to the letter there can be consequences outside of a parent who gets angry.  They can attempt to tell an angry parent without a 504 that they’re not required to provide accommodations, but they’re doing it out of the goodness of their hearts because they care about your child.  Warm fuzzy feelings aren’t going to protect your child from potential medical negligence though.

When Angelina was diagnosed in March, she was in the middle of spring break, so we had about 10 days before she had to attempt to go back to school.  One of the first things I did was contact the school district pupil services director along with the principal at her school through email and let them know that she had been diagnosed with T1 and I wanted to update her existing 504 to include t1 accommodations.  I also very firmly stated that she would NOT be returning to school until accommodations were in place.  Apparently I was too firm though because it sent everyone into a panic.  I got a flustered reply from the pupil services director saying that she would get me in touch with the director of the district nurses to go over a plan.  When I spoke with the nursing director she said that for other students with T1 they don’t usually do a 504 plan and they just follow the dr’s orders and try to make additional accommodations that the parent requests.  Here is where I fell into the sense of false security that they would do all this for my daughter out of the goodness of their hearts.  I emailed back and forth and played phone tag with the nursing director for a few days getting things in order and by Friday afternoon I had an appointment set up on Monday morning (which was the first day back from Spring Break) with the district nurse who oversees Angelina’s school.

Angelina and I went to the school that morning and brought all her supplies and doctor’s orders.  The nurse already had a binder all set up with their logs and info sheets and most of the additional things we had agreed upon that weren’t covered on the doctor’s orders.  I wasn’t expecting Angelina to go back to school the next day but they assured me that they were ready for her, and she was enthusiastic about returning so she ended up only missing that 1 day.  They placed a new health tech at her school who was an RN.  We live in California and our state law is that only registered nurses can administer injections.  Since she was so newly diagnosed she needed help with most of her care still.  She did start doing her own injections at school with supervision.  However, the “backup” health tech who came when the regular HT was out was only an LPN, which means that he could not administer injections.  There were a few days when I would get a call at lunch time that Angelina didn’t want to do her own injection and he couldn’t do it, could I please come up and give her her insulin.  He seemed nice enough and asked a lot of questions about her.

Then a few weeks later I was looking over her weekly logs.  We had it set up that the paper log they kept of every bg check, every meal, every injection would come home with her on Fridays.  Well, I have the most disorganized, forgetful kid so they usually didn’t come home on Fridays.  I usually only got to see them if I happened to be summoned to the school to do something for her that the HT couldn’t do, or if Angelina wasn’t cooperating and I remembered to ask for it.  So it was really like every 2 weeks or so that I would get a copy of her log.  While reviewing the logs I noticed something pretty alarming – a couple of the days the sub HT was there Angelina had low blood sugars (one day was a 47) and I never got a call.  Not only did I not get a call, but there was no record of a recheck and she got sent home on her hour long bus ride like nothing ever happened.  Obviously things turned out okay, but it’s still scary because what if they hadn’t?  I never got the chance to speak with her bus driver to relay information about her t1, I don’t even know if the bus driver knew about her t1.  Not to mention that the bus driver is driving the bus and can’t watch Angelina the whole time to make sure she’s okay.  The other times Angelina experienced lows at the end of the day the regular HT would call me and relay her numbers, what she had to eat or drink to treat it, what her number was after 15 minutes and left it up to me whether Angelina could ride the bus home or if I wanted to come pick her up.

After I discovered this lack of notification and follow-up I contacted the district nurse and told her what I had found in the logs.  She did say that the sub HT had notified her of Angelina’s low.  Which is great for record-keeping, not so great for Angelina’s safety or my peace of mind.  I told myself that he did recheck and just forgot to put it in the log, it was the end of the day.  So, I accepted the district nurse’s promise to speak with him to make sure he called me if there was a next time.  Except a few weeks later I noticed it again on the log, after I had contacted the district nurse.  There it was – a 59 – “gave juice, feels ok”.  No phone call home, no record of a recheck at 15 minutes and she went home on the bus.  Since she did end up being okay it was just frustrating.  But imagine if that juice and “feeling okay” wasn’t enough to bring up her BG.  Imagine that she got on the bus and her bg continued to drop and within 30 minutes she “fell asleep” on the bus.  Only no one realized it until she didn’t get off the bus at her stop and maybe the bus driver didn’t notice until she got back to the bus barn.  It’s scary to think that could happen, but it’s not out of the realm of possibility.  In that instance though, without a 504 in place I wouldn’t have had much legal ground to stand on because “call mom” and “don’t send on the bus in case of lows” isn’t in the medical plan.  That’s in the informal verbal agreement that I had with the school.  As far as their legal responsibility, the sub HT giving her juice and calling the district nurse to let her know about the low is all he was required to do.

In our case, things were okay but I was left with feeling of frustration and worried about if things didn’t turn out so well next time.  Type 1 diabetes is an unpredictable beast.  It doesn’t always do what it “should”.  And I know enough about school red-tape to know that if something “bad” were to happen that the schools’ defense would be “We weren’t required to notify the parent, and the times that we notified the parent previously were out of the goodness of our hearts.” and it’s possible that would be the end of that and I would be advised to get a 504 plan that does make them responsible and required to contact me, if that’s what the plan says.

A 504 isn’t just about keeping the school accountable and helping to prevent accidental gap in care.  It also can protect the child from discrimination.  There’s nothing in my child’s medical plan about her being able to attend a class party and have a cupcake.  So, if the school doesn’t feel up to figuring out her insulin needs and carb counts for a cupcake, without a 504 plan they can say she can’t participate becaue of her diabetes.  Or, if she has a high BG and needs to use the restroom during standardized testing she can be penalized or get in trouble for getting up and using the restroom.  Her medical plan doesn’t say anything about allowing her unrestricted restroom access, or extra time to finish a test if her blood sugar is out of range.  Or, allowing her to take the test on a different day without penalty.  Her medical plan doesn’t say that there may be days that she comes in to school late because we were treating a stubborn low BG in the morning.  Or maybe we were up half the night treating a low or high bg and she didn’t get enough sleep so I let her sleep in for a couple hours and took her in at lunchtime.  Normally, all of those would be considered “unexcused” tardies.  Which means that they count towards truancy, and too many tardies or absences can lead to legal proceedings against the parents for truancy.  Her school district requires a doctor’s note for any tardies or absences over 10 in a school year.

I don’t know about anyone else, but I certainly don’t take my child to the doctor every time they experience a low blood sugar.  And Angelina doesn’t just have type 1.  She also has asthma, allergies and an immune system that likes to catch every illness that goes around and make it worse than it was in the person before.  I don’t take her to the doctor every single time she has an asthma attack.  But I can’t send her to school if she can’t breathe, right?  In 3rd grade she missed a lot of days because she would get a cold that would go straight to her lungs and she would be struggling to breathe for DAYS.  She missed most of the month of January 2012 because of this.  She would get better for a day so I would send her to school and the next day she would come down with something else that kept her home for several days.  I wish I was exaggerating.  Her teacher made an offhand comment to me one day about all her absences, I think she thought I was keeping her home just for fun.  Especially since she would seem better when I did allow her to go back to school.  So, one day she work up with junky lungs, but she said she felt mostly okay.  I decided to give her a breathing treatment and send her to school.  I dropped her off at 8:30am and went home and waited for the phone to ring.  The call to come get her came at 10am.  I headed up to the school and went into her classroom to help her collect her things.  Her teacher came over and said “She was fine this morning and then all of sudden she just couldn’t breathe and started wheezing and coughing! I had no idea!”  To which I just responded, “This is why she has missed all of these days lately.  This actually isn’t that bad, which is why I decided to send her today.”

Anyway, the point of that is that not every single missed or late day due to a chronic illness requires a visit to the dr, but unless you have a standing document that says that, you are in danger of legal action being taken against you or your child for excessive absences or tardies.  In some districts, excessive absences may also equate to the child being forced to repeat a grade, even if they have a passing report card and seem to be grasping the concepts.

For additional information on 504 plans and what to pack in your child’s school tool kit, please click on the page labeled “Info For School” on the top of this blog.  Or just click here.