Fight for what you want…

So far, we have gone through Abbie’s story from the beginning.  I explained our “denial” phase and how the next year seemed like the best and worst year ever.  I have told you about our trials with her old endocrinologist.  You been told about our fight with the insurance for her pump and her Dexcom.  And then how we fought to advocate for our daughter at her school.  I don’t want you to get the wrong impression, we LOVE Abbie’s school (well her Elementary school, we don’t know her Middle School yet).   However, we wanted Abbie to know that she needed to fight for what believed in and what she needed. 

As I told you she started out on a Tslim X2 back in October of 2018 and loved it.  She chose the pump, mostly based on features and because of the ease of the face.  It looks a lot like a phone.  I was caught between the Tslim and the Omnipod but I was not the one that had to wear it and would ultimately be using it on a daily basis, so we let her make the final decision.  She wore it with pride and the only time it caused her any kind of grief was at gymnastics when she had to unhook from it for an hour or when someone would ask about the tubing while she was waiting for her class to start. 

This was from October all the way until summer hit.   And that is when the major challenges set it.  You see my daughters LIVE in the water during the summer.  She discovered she had to unhook from the pump anytime she went near the water, which was every day.  Then she could only be unhooked for an hour at a time before she had to hook back up to it.  This began to get bothersome around the end of April just when the weather got warm enough to swim.  I think the final straw for her was when she went to change her site one day and the infusion needle was bent but we were not aware.   It caused her such excruciating pain.  From that moment on she had such anxiety over doing site changes it was an ordeal each time. 

I think it was around the middle of May that Abbie came up to me and told me she wanted to go back on shots.  She said she was tired of being on a pump and having to unplug for swimming and other activities.  I was okay with this but I knew it was not the only reason why she was saying these things.  I knew it was the anxiety over the infusion changes that had her willing to go back to shots.  So, I went looking again at other options even though I would be happy to let her be MDI if that is what she really wanted. 

I immediately went back to the original option of Omnipod and got her a trial pod.   She LOVED it.  She liked the freedom of no tubes and she looked up the YouTube videos of the insertion and it looked so much easier to do.   Now it was up to me to see how we could make this happen.  As most of you know, when you choose a pump you have them for 4 years period, unless you pay out of pocket.  I called her CDE and she got me in touch with their Omnipod Rep that very day.   He told me that Omnipod works a little different and that if the insurance would be willing to switch the infusion sets over to Pods then all I would have to pay for out of pocket would be the Personal Diabetes Manager.  I was pleasantly surprised to learn I would only need to pay $199 out of pocket for that and even that I could break up into monthly payments if I needed to.  So, a little over 2 weeks later we had her new Omnipod system in hand and were off to training.  

It has been about 2 months since then and we have even upgraded to their new Dash system since that one and I have to say Abbie is loving it.   She has tried every site available to her and she hasn’t complained once.  She loves the freedom that she can just hop in a pool and not have to worry about it. 

This was just one more way I learned we as T1D parents have to fight for our kids… and another way Abbie had to learn to stand up for herself.  She really had to look at what was important to her, figure out what she could live with and without, and decide if she wanted to stick with something or try something new. 

So, folks, we are about 6 months into this blog and I have to say it has been a welcome outlet that I hoped it would be.   I am hoping to have some new recipes coming in the next few days.   I am sorry the posts have been few over the past couple weeks but we are working on remodeling our bathroom and it has been taking a lot of my time.   As of this post, you are up to date!  Woohoo!  So, from here, I will be posting tidbits of things that I see are important, news facts, things that happen in our life etc. 

If you have any suggestions for the blog… ideas on content or a post idea or something I need to look into, please send me a comment and I will be more than happy to look into it!  Thanks for keeping up with us so far! 

What about school and 504s or IEP???

On February 27th, 2017 Abbie went back to school like nothing had ever changed for her.  On the back end though, her Dad and I had a big meeting with her school principal, assistant principal and nurse.  Was this her 504 meeting?  Nope, we knew nothing about a 504 plan at that time and to be honest we really didn’t need it.  Abbie was only going to the nurse before lunch and once she was completely off insulin 2 months later, she didn’t go at all unless she felt like she needed to.   This continued through her next school year because, well, again she was on no insulin until she was out of school so there was just no need.  We had another meeting at the beginning of her 5th grade school year, but again this was not a 504 meeting, we still had no idea about that and no one ever mentioned it to us.  This meeting was just to tell them what had changed and how often she needed to speak to the nurse.   For the first two months of the new school year, Abbie would get her Levemir (long lasting insulin) at home, and would need to take her Apidra (fast acting – bolus) insulin before lunch or for corrections at school. 

Everything went smooth until she got on the pump and got her CGM in November.  I remember there was a permission slip sent in for a field trip and a note.  The note read something like this:

Dear Mr. and Mrs. Eger,

There are currently 5 chaperone slots available and I have saved one for either of you.  I have spoken with the school nurse and she will not be able to attend the field trip that day.  We have also spoken with the district and they will not be able to provide someone to go, so one of you will have to attend the field trip with Abigail in order for her to attend.  Please let me know which of you will be attending and if Abigail has permission to go. 

Wait, what?  First off, she had been on her pump for over a month and basically the pump did everything for her.  All she needed to do was text me or call me and I could walk her through it.  Second off, both my husband and I work, why should we have to take off work to go on a field trip?  I thought something didn’t sound right.  So, I started doing some digging.  Insert the 504 here. 

Anyone who is not familiar with the American Disability Act and how it pertains to persons with Diabetes should definitely familiarize themselves.  Also visit: Special Considerations for School .  This page will give you tons of information about 504 plans, information about attendance, college, child protective services, emergency lockdown procedures and more! 

But back to the story and then I will give some more information.   After calling around, I was told that according to ADA laws they had to provide Abbie with someone who was trained in her T1D care on a field trip and that they could not prevent her from going just because her Dad or I could not chaperone.  The nice lady I spoke with at the ADA did tell me I needed to get a 504 Plan in place so that I had grounds to stand on in the future, but for now they would back me up if necessary.  I honestly didn’t want that fight right this second, as this was somewhere we had to get “acceptance” for my kids to go to school (they go out of district) and I did not want to do anything to jeopardize that.  So, we figured we would play nice, get the 504 plan in place and then we would have something to play ball with.  Andy ended up having some vacation he needed to use anyway, so he went on her field trip, while I drafted a 504 plan and we set a meeting. 

Apparently, Abbie was the first 504 they had ever had.  They had IEP’s but not any 504’s.  They had to scramble to get a coordinator together and of course they just used the IEP coordinator which was fine.  She called me and told me that the Superintendent wanted Abbie to take a battery of psychological and educational testing before the meeting to see where she stood at that moment…. wait, what?? (See a pattern here, huh?).

I refused.  Abbie made honor roll.  She had no problems in school whatsoever and did not need any type of educational testing.  The research I did stated that psychological and educational testing is done for IEP plans not for 504 accommodations which I had to reiterate.  They called me a day before our meeting and informed me that the Superintendent decided to honor my wishes and not make Abbie do the testing; umm, yea I know because it would have never happened.  Fast forward a couple of days to the meeting, we sat down with the same people from the other meetings plus the IEP, er, 504 Coordinator, and they went over my document which I will attach.  My first 504 was very long and drawn out, I have learned a lot since then and found others that flow much better.  But it got the point across.  It allowed her to use the bathroom when she needed, drink water in class if needed, eat a snack if needed, have her cell phone on her as a medical device, have a nurse present with her on field trips if necessary, and special accommodations for testing. 

The school year went very smoothly after that.  Only one teacher threatened to take her phone from her when she peaked at her blood sugar…yea that was nipped very quickly.  And one other substitute told her she couldn’t go to the bathroom, my daughter politely told her she had a medical condition and she could take it up with the nurse or principal but she was going to bathroom; got up and walked out.  J 

The first document attached is Abbie’s original LONG and DRAWN out 504 plan.  I think it was like 12 pages, ridiculous.  But it had good information in it. 

The second document, I cannot take credit for.  I have told you I am an avid listener to the Juicebox Podcast.  He has posted Arden’s (his daughter) 504 plan on his blog since the beginning.  This is a rendition of his.  You can find all of his 504 Plans at: Arden’s Day .

The Last Straw….

When we left off I was very excited because of a Endo appointment Abbie and I had with a NP.  She had gotten us all hyped about Abbie becoming independent the coming school year if not sooner, and that we were doing a fantastic job.  We got home and felt fantastic and Abbie told her Dad all about the appointment.  It was the happiest I had seen her in a while. 

What people have to understand is what this disease does to our kids, it changes them not just physically but emotionally and mentally.  Over the course of the past year, I saw my daughter slip into a depressive state that Andy and I did not really know how to approach, and I am currently in school for Clinical Mental Health Counseling.  You take this normal, happy-go-lucky kid and tell them that everything is going to look the same on the outside but on the inside they have to battle something to keep themselves alive…every day.  While doing that they have to explain it to their friends, deal with bullies, deal with school, leave classes 4-5 times or more a day to go to the nurse, wear funny looking devices on their body, be singled out because they can have cell phones out in the classroom or drink juice in the middle of class.  But on the outside they look just fine, so to all the other kids they don’t understand and kick them while they are down, so to speak.

At the beginning of Abbie’s depression, I attempted to get her into see a counselor, but she did not respond well.  At this point we were doing most things for her, counting her carbs, making all of her treatment decisions, probably harping on her a little too much.  So I decided to step back and give her some responsibility because she sat down and told me that is what bothered her the most, she just wanted to feel like this was hers.  So I started letting her help me count her carbs, do her infusion changes (with me present and helping), changing her Dexcom, and everything in between.  Her mood and overall personality did a 180 over the course of a couple weeks.  She was smiling again and then that doctor’s appointment was the icing on the cake, because school was the last place that she felt singled out, like an outsider. 

So about a week after that appointment, my husband and I went on a cruise and the girls stayed with my mom for spring break.  Everything was great.  Abbie would text me with how she thought she should treat a number or a meal, and I would adjust if necessary but most of the time she was close or correct.  When we got back, the school handed out the schedule for SOL testing that would be happening at the end of the month in May and Abbie went pale.  These tests have played havoc on Abbie since she was diagnosed.  Last year, her blood sugar went up to the 350’s and there was nothing I could do about it. 

So, I got with the school and asked them how this was going to work with her Dexcom and treatment.  I was told she could not have her phone, that the proxy could have her phone but that any treatments had to go through the nurse.  So basically, if Abbie went high, she would be pulled out of the test by the nurse, treated and brought back.  I couldn’t be mad at the school, this is what was on her DMMP and they were just following that.  At this point I figured I would make a plea to her CDE and her Endo to change her DMMP at least temporarily to get her through her SOL testing. 

I called her CDE and made my case telling her that Abbie has shown tremendous responsibility over the past few months, that it was ridiculous that she had to miss so much class time and have to stop these tests when all I had to do was send a simple text message and the message get delivered to her.  Her CDE agreed and said she would state my case to the Endo and have him call me back.  So I waited.  And I waited.  And I waited.  By 3pm that afternoon, Andy got a little heated and called the doctor’s office to leave a not so nice message.   I would say 45 minutes after that phone call, my phone rang but it was Abbie’s CDE.  She said she put in the information to her doctor for Abbie to be independent, at least for the month of May until we were able to see him again in July and he denied it stating it was not in his policy to allow children to be independent at school until high school age.  She said she put in a message for him to call me as soon as possible.  I was livid.  I was not so sure a phone call was going to be the best idea, but I was up for it.

The next morning while I was training a class, my phone rang, it was the doctor’s office.  I kindly excused myself and stepped out into the hallway.  He started off the conversation nice enough, as he was always pleasant to speak to, very kind.  He seemed genuinely concerned as to the trouble I was dealing with and seemed to listen to my plea. When I stopped talking though is when it all changed.  He started off by letting me know that higher blood sugars for a 30 minute test was not going to hurt her.  I shot back letting him know that SOLs are not a 30 minute test, they can last up to 4 hours and these are not just higher blood sugars, she goes up to 350 or more.  He went on to tell me that that wouldn’t hurt her for 4 hours or we could give her a temp basal to battle it before and after.  I told him that made no sense considering I did not know how much she would actually rise.   It was at that point that he went off on a tangent about that no matter what I said that my child would not be independent, no now, not in middle school, and possibly not by high school. 

Umm what?

He went on to tell me that children that have too much responsibility tend to resent diabetes.  Well excuse me…. Of course she resents diabetes, it freaking diabetes, at least this is giving her control of it.  I explained to him her depression and how we dealt with it and how giving her the responsibility gave me my child back, except for at school, school was the one place she still felt different.   He told me it might have worked for now but eventually she will resent it again, she will resent me too for putting it all on her.  Well I don’t put it all on her, first of all.. you’re not listening! He then went on this long run about a self-help book he talks about at the Diabetes Camp and how I needed to be a better parent to my daughter by taking back control of her T1D before it got out of hand or I would lose her. I am pretty sure I was tasting blood considering he was now critiquing my parenting style.  The final nail in the coffin was when he told me that his decision was final, and it was his policy on independence and that he would make sure no other doctor in his practice gave my daughter this either.

I was done.  I hung up with him, called the front desk and cancelled her upcoming appointment.  I researched surrounding doctors and learned that I currently drove an hour and half one direction to his office, if I went the other direction an hour and a half, I had the Virginia Commonwealth University Children’s Hospital which was full of potential Endos.  I began drafting an email to potential new endocrinologists and have never looked back.  Two days later the Patient Director reached out to me over a phone call that last almost an hour and we discussed what I was looking for.  I never talked bad her current Endo because I believe we just had a difference in treatment outcomes for my daughter and that he looked at her like he looked at every other child.  I only told them that him and I had reached a fork in the road that we could not agree on and I was looking for a more progressive approach to her care.  She set me up with a new Endo and we have had one appointment.  So far, Abbie loves her and I like her a lot.  She listened and understood and she took the time to talk to me and to talk to my daughter like she was a human being. 

Moral of the story:  When it comes to your child… stand your ground.  You know what your child needs, what makes them happy and what makes them healthy.  You deal with this disease with your child 24/7 so do not let someone who only sees your child every 3 months dictate how they live their life. 

MDI (Multiple Daily Injections) and normal life…

So, I will start of by saying this will be the point of the blog where I am going to give a warning.  What transpires after this worked for me, worked for Abbie, worked for my husband and our entire family.  It may not work for you at least not in the same manner.  I am not a medical doctor and absolutely do not claim to know all.  We are still learning everyday as T1D changes almost on a daily basis.  With that being said…onward!

As I stated school was already out for the summer and we had made all of these plans like going to the beach for a week and we had a cruise planned.  I had read horror stories of families that were afraid to leave their homes with their T1D children for fear of them going low in the car or away from the house but I refused to be that Mom or do that to Abbie or Jamee.  I am absolutely not saying that if you were that Mom or Dad, you were doing anything wrong, that is what worked for you and helped you get over your fear.  For us, we needed to continue on with normal life and see that our daughter was not broken, that she could survive, thrive, and move on. 

So, we went home and re-adjusted Abbie’s diet to what the doctor had suggested since he had told me I was not feeding her enough carbs.  She started getting around 60+ at every meal.  It was extremely difficult I will say that.  Breakfast and lunch were easier because it was easier to incorporate bread but dinner was a disaster.  She was so full from the main course I made, trying to get her to eat approximately 40g of side dishes was a task.

At this point we were still on the multiple injections which were totaling about 6-8 a day and she was sticking her finger almost double that because I was curious how food was interacting with her system.    Even without the modern-day technology of a CGM I noticed after a carb heavy meal her blood sugar would sky rocket and then about 2 hours later it would crash.  I mean a hard crash, not gradual, but it would go from 140 to about 320-350 and then by the end of the 2nd hour she would crash down to 40-50.  We called the CDE, and they adjusted her carb ratio because they said that was really the only thing to be adjusted since she was still on such a low amount of long acting insulin and this was only affecting her at meals.  All this did was to make that original high number even higher but she would still crash about 2 hours later.  And let me tell you they were scary crashes and they were fast. 

I remember my Mom and I had decided to take the girls to Nags Head for an extended weekend.  I decided to let Abbie just be a kid and we splurged all weekend.  I remember thinking, there was no way she would have that same crash.  But you know what she did.  And the poor kid felt awful.  She wasn’t sleeping well, she had black circles under her eyes, she was moody all of the time, and just didn’t want to do anything.  I think it was about the end of July, about 2 weeks after the Nags Head trip that I became fed up.  I went to Abbie and asked her if she wanted to lower her carbs back down.  I told her we would start experimenting with food and fixing things a little differently so she didn’t feel left out, but that ultimately this was her decision.  She didn’t even hesitate and that night for dinner she has maybe 15g and was full.  Because it had been so long since she had only had that much, she required a snack later which we of course gave her, she chose some Slim Jim’s, cheese, and some strawberries. 

We noticed an immediate change in her numbers.  She leveled out and no longer had the scary lows at all.  Please don’t get me wrong, Abbie does not have perfect numbers between 85 and 110 all the time.  She definitely has highs where she will go up to around 300 but usually we can pin point what it is and we try to fix it way before it gets to that point, but more on that in another post.  More importantly, she very rarely has lows and if she does they are lows that we can surely handle, maybe in the 65-75 range.  And trust me when I tell you, at least when it comes to my daughter, it is MUCH easier to bring Abbie up than it is to try and get her down!

I think even more important is how Abbie felt.  She immediately felt different and she will tell you.  She started sleeping better, her attitude was much more pleasant (well for an 11-year-old that is hormonal), she no longer had a brain fog, her skin and eyes looked healthier, and she had the energy to play and just be a kid.  So, we as her parents knew that we were doing the right thing for her.  We kept her meals around 15-25g of carbs, a generous portion of healthy fats, and lean proteins.  Most of her carbs come from fibrous vegetables and the occasional lower carb wrap, lavish bread flatbread or something similar.  When we went back to the Endo we of course were scolded, but I didn’t care this time.  We take care of our daughter 24 hours a day, 365 days a year and this works for us and her.  She was thriving and developing beautifully!  But because this was something foreign to him it wasn’t appropriate for his patient.  I smiled and nodded and decided at that moment my husband and I were going to be Abbie’s advocate from now on no matter the cost.