"It’s classic OCD," the therapist said.
I wish I could blame diabetes for this, but I don’t think I can. While diabetes didn’t cause Charlie to have OCD, it did provide him with something to be obsessively compulsive about. The thought that his blood sugar could go dangerously low at any time provides the anxiety which triggers the compulsion to test his blood sugar all day long.
He’s showing other behaviors associated with OCD, but it's probably best that I keep those private.
The CGM has helped but I think it’s come too late. This fear has had several years to manifest inside of Charlie and won’t be undone so easily. It has become Charlie’s natural instinct to say that he feels low and to test himself very often. I do think that he legitimately feels low sometimes and I’m thankful that he tells us, but it has become crystal clear that the other 90 percent of the time, it’s the anxiety talking.
For a logical kid like Charlie, the CGM takes away the unknown – the very thing he been programmed to fear - and this presents a dilemma. Sometimes I can see the confusion on his face. He’s habitually compelled to say that he feels low and to test his blood sugar, but the 245 on the CGM screen puts those thoughts in doubt. The facts don’t align with what he thinks he’s feeling.
I picture a little devil on his shoulder, whispering into his ear. Putting thoughts in his head.
"Psst! Charlie! You’re probably low. You don’t want to pass out like you did at the food store, do ya? You should test yourself before it’s too late."
The fly on the wall of our house would hear plenty of this …
"I feel low."
"OK, what does the pump say?"
"185."
"OK, Charlie. We’ll keep an eye on you. Try not to worry about it."
So, that’s the latest. OCD. Obsessively compulsively testing his blood sugar.
Why that? Why couldn’t he obsessively compulsively fix me some eggs or change the oil in my car or obsessively compulsively stop fighting with his sister?
Maybe I should get him that video game that rewards players for the amount of times they test their blood sugar.
He would kick ass!
Sorry he has to deal with this on top of everything else. I see this in Leah sometimes too, which is one of the reasons I'm dreading the start of the new school year. I'm sure she'll be down in the office every 5 minutes! You can't blame them--they are forced to deal with something out of their control every single day. Hang in there!
Does Charlie take any allergy medication?:
My son has an obsessive and compulsive nature like his Dad, but he never had OCD. A few years ago, however, he developed full blown OCD, which we traced to the Singulair he was taking. We had a psychiatric evaluation done, already knowing that the diagnosis would be OCD. Soon after that, my husband said he recalled sseeing anecodtal information about a connection between Singulair and OCD symptoms in some kids. A Google search brought up tons of stories from parents who had gone through the same thing we were experiencing. So we got him a different medication and the severe OCD symptoms began to disappear almost immediately. There have been other allergy meds that have had a similar, more mild impact on him as well.
My Endo and I decided the CGMS would make my OCD worse. Actually, he doesnt really aknowledge that I have a mild case of it but he knows my personality and he knows all the extra numbers would simply drive me crazy.
I developed symptoms in high school (1977) and when I went to college it all got much worse.
After really doing some thinking, I believe the CGMS would give me just one more thing to be checking and checking and worrying about.
I think all the number checking and being sure I had supplies etc. is what started making the whole condition worse than it had been.
Growing up, I never quite felt the same as my peers after my diabetic diagnosis, and also, I spent many years fretting about the ever-unanswered question, "Why ME?". Genuine statements of concern by adults around me had an opposite effect, they actually taught me how to worry -- after all, if an adult was concerned, I must also need to be concerned. Statements made by my peers about my diabetes, which were usually neutral, okay, or out of curiosity, further ingrained into my head that I was "different" from them, even if my friends' intents were not meant to do that.
I did not like that feeling beecause it always took me down a notch lower than my peers, in my own mind from a pre-teen and teenage perspective. As an adult, I am responsible, capable, and equal to my adult peers. In my puberty and teen years, having diabetes might as well have been a prescription for perpetual depression, hopelessness and physical maladies for the rest of my life. Of course today I know better. Well, at least I "cope" better.
But back then I had not yet learned how to cope, and many times initially I portrayed myself in such a way to bring attention to my diabetic situation even when nothing was wrong with my diabetes. What was wrong, instead, was that I "had" diabetes. Having diabetes caused me quite a few mental issues that I don't need to go into right now. I hated how diabetes made me feel physically from the highs and lows, and I hated how it made me feel emotionally when I compared myself to my peers during the years through the public school system.
Eventually, my best self-taught coping mechanism was to actually learn how to keep my diabetes under control as much as possible so as to minimize its being noticed by my friends (as if it really would have mattered to them in the long run, though it DID matter to me). If I had to eat a snack, or check my blood sugar, I did not draw attention to my diabetes; instead I would simply excuse myself as if going to the restroom with no mention of diabetes. Only the teacher knew when I needed to take care of my diabetes, but the other students probably just thought I was going to the restroom.
By doing this, I was able to feel like people liked me for who I was -- they knew of my diabetes, but I never said or did anything to make them think about it... That way, if they weren't thinking about my diabetes, then they were likely to just treat me like a "normal" person. At least, in my own mind. I think it worked for the most part. I wanted to be liked for who I was, not because I needed any sort of pity from diabetes or the mole on my butt or the fact that I needed to trim my underarm hair every few months. Do you get my drift? :-) Pun intended.
I don't like labels like OCD. I mean, maybe Charlie does exhibit OCD behaviors, I don't know. But labels sometimes limit what one sees in the overall picture. And I am strongly tempted to put myself in Charlie's shoes and look for, what is to me, a very obvious and known cause for his anxiety and very likely an internalized depression that he does not know how to relay to others except by saying he is low all the time, or to feel more in control of his life by constantly checking his blood sugar level. Children are astoundingly clever, each in their own ways, but sometimes it takes an adult to understand the meaning behind the cleverness.
If Charlie has felt "different" all of his life, especially different from his peers and with no know cure date set for diabetes, depression may have insidiously built up over time such that no one noticed it and so that Charlie may have thought there wasn't any other way he was supposed to feel, as if it were normal because it is all he has ever known. His increasing self-awareness and other "growing-up" developments, I suspect, is what is causing him to allow depression to surface these days.
I don't know if my perspective is helpful, but in any case it was not intended to lay blame -- and even if my perspective is correct, it's just one of those things that happens and is no one's fault. It just happened this way in my own personal experience, and perhaps my relaying it publicly is helpful for you or for others who have read my reply.
Thank you, Kelly. Hangin' in.
angulargyrus: Amazing. Glad your son is doing better. Nope. Charlie doesn't take allergy medicine.
tasha: I hear ya. It does give another thing to obsess about. For us though, the finger checking has gotten out of control and the CGM is a must.
dantonyc: Thank you. I appreciate your perspective on all this. I'm not a fan of labels either, but it's also good for Charlie to know that OCD is a real thing and some of these obsessively compulsive thoughts he's having (and I didn't share half of it) are not his fault. He's a work in progress, as we all are. Thanks.