Thursday, August 20, 2009


As my long time readers may know Kaitlyn has been struggling in school. Particularly with reading. She's a great math student. I have pushed for all sorts of testing from the school because with how hard she works and how little progress she makes I am concerned about her. They found nothing though. Well, I shouldn't say nothing really. Her tests did have some interesting results that no one really explained to me why. You see in some of her psychological exams there were some results that seemed to puzzle everyone. She tested on some subtests almost at a genius level, but then on different tests in the same category she really flopped on. I thought hey this is a red flag, but because the numbers were saying no learning disability they were like well we'll have to leave things as is.

So at Kaitlyn's physical this year I mentioned to her doctor about her struggles. She asked us a few things about Kaitlyn. How she behaves in school, if she's really good at anything, what's her attention like. I told her everyone loves her at school, she's really good at math, but I don't think she's paying as close attention to things as she could be. So she gave us a questionnaire to fill out as her parents on ADHD. Which we did right away and brought right back to her along with the testing the school had done. She was pretty much ready to say yes ADHD lets get her on meds, but she needed to lay everything out for us.

So today Joe and I went without any children to the doctor's office to discuss it. She told me first of all while there were a few mentions in the school psychologists report of her attention she needs more from him. She can do this without the school, but if I think I can get them on board that would be great. Then she went over what we do and why we would do it. First of all Kaitlyn does not have the hyperactivity part of ADHD. The doctor strongly believes that it's an attention thing. And when she describes a typical ADHD child and their behaviors it sounds so much like Kaitlyn. She can't really fully focus on one thing. She explained it to us like this. To a child with ADHD it's like trying to watch 15 different episodes of your favorite TV program at once. You want to watch it all, but you can't get all of the information you need by watching those 15 episodes at once. So what the meds do is take 14 of those TV's and shrinks them down and turns the sound down on those while making one of the TV's big and loud so you just focus on the one. Then you can get all the information you need and move onto the next task at hand. If we continue to allow Kaitlyn to watch 15 TVs at once then eventually she'll begin to feel that she can't do anything and is a failure and has more of a chance of failing in life. So of course we don't want that.

Now the scary part is the meds they have to treat this all have black box warnings. The stimulants have caused sudden unexplained death and the non stimulants are an antidepressant which in young people can cause unwanted side effects like thoughts of suicide. Big picture though is there are only 52 deaths out of 7 million children on these drugs. So she has a greater chance of dying playing a sport and we wouldn't stop her from doing that if she wanted to. Okay, not so bad.

However, here's where I think the rub is going to come in Kaitlyn's case. Stroke is one of the possible side effects. I asked if there are certain risk factors and there are. First, if there's a heart defect (ie a hole in the heart) it's not safe. Now Kaitlyn has had all normal exams and thankfully the doctor would send us to a cardiologist who will do an EKG on her to make sure her heart is all good. So a little peace of mind there. However, if there's history of stroke in the family then it might not be safe for her to take. Joe's mother had a stroke when she was in her 40's. So when we told this to the doctor she kind of didn't know what to say. She said we'd have to talk to the cardiologist about that. Okay, so one more reason to see the cardiologist.

Now I really wanted to make sure that Kaitlyn is properly diagnosed so I asked the doctor if there's more testing we could do. She said we'd have to pay out of pocket which we can't do. However, after talking to some other people that might not be the case. So tomorrow I will be making some phone calls. First I need to try to get in touch with the school psychologist to see if he's prepared to say yes this looks like ADHD. I also need to talk to this years teacher and last years teacher as well. And then on top of that I think the insurance company will be getting a phone call so we can find out what exactly we can do to get this properly diagnosed in her and then we will go from there.

My head is spinning a little from all of this. A whole diagnosis for her I wasn't anticipating, but the more I talk to people the more I think this is what Kaitlyn has. So a new medical journey for us to take with Kaitlyn.