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.
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.