Yesterday afternoon I took Nevaeh to her pediatrician. She has been complaining of constant headaches and frequent belly pains with the headaches, and she has had problems sleeping (both getting to sleep and staying asleep) for a loooong time. We thought back in the summer that she may be having headaches because she needed glasses. She did need them, and got those in September. Nothing has improved. Her words to the doctor were that she has headaches every day, some worse than others. So it’s time to try a medication. She’s had an MRI and tests to rule out anything serious. So the doctor suggested Elavil (over Periactin since she the Periactin can stimulate appetite and we don’t need that...). However, it can cause heart arrhythmias if the person has a heart condition. So we left the doctor’s office and went to Apple Hill and got an EKG done. Once we hear the results of that (a day or two), the doctor will decide if she can start the Elavil.

Then at 5:30 Jonathan had his appointment with the psychiatrist. WOW. First of all let me commend this doctor. He had excellent “bedside manners”, was kind, listened to our questions, and talked with us like equals, not degrading us. And the icing on the cake? This man normally sees his last patient from 5:15 to 5:30. He agreed to this appointment because of the urgency expressed to him. We did not leave that office until 6:45, and he was hoping not to miss his daughter’s ballet practice, and not ONCE did we feel rushed. Now THAT is how a physician should be. I’m not saying I think my life is more important than a doctor’s personal life, but you know what I mean.

So this hour and 15 minutes was spent filling him in on ALL of Jon’s life history. That’s a book in itself! When we finally got to the here and now, we started discussing this medication issue that Hershey had pointed out. I’ll do my best to explain.

Imipramine. It is an anti-depressant, but can be prescribed for pain, which Jon has been taking to treat his headaches/migraines. Up until January Jon was taking 250mg per day for months. In January he told the doctor his pain was increasing overall and he needed a med change or something. The doctor’s first response was let’s see if we can increase the Imipramine. Then he hesitated and said well, maybe we should check your levels (to our knowledge he’d never done this in the 2 years he’d been on it). So we did. When the levels came back, the nurse called and said skip a day completely, then decrease to 150 mg because your levels are elevated and “near toxicity”. She wouldn't tell us the levels. So he did what she said. Then this whole concussion and delirium thing happened and Hershey said hmm...maybe the meds contributed to the delirium. So his family doctor told him just two weeks ago to decrease to 100mg, as well as decreased his primary pain medication a dose. Yesterday at the psychiatrist as he was pulling up records on his computer, I asked him if he would please tell me what the last level of Imipramine was.

Now before I tell you his number, I will tell you that the psychiatrist informed me that 150-200 (units or whatever) was normal range (so obviously 200 being the highest they would care to see it). He also informed me that with this medication, unless you keep it within that therapeutic range, it’s not going to benefit you, and if anything it can harm you and cause heart problems and KILL YOU. Yes. He said this. He also said one needs to have labs drawn every three months to make sure they are maintaining within that therapeutic level. Now. Jon’s number??? 523. Yes. MORE than double the therapeutic level. I was shocked. I was angry. So my next question was, if this isn’t at a therapeutic level, and it’s not doing him any good, he should stop taking it, no? He looked up what the half-life of the med is, and said he could stop taking it immediately and within 24 hours it would be out of his system. 24 hours. 24 hours!! And yet his family doctor simply decreased him little by little. No wonder he ordered the stress test and heart monitor next week. He’s covering his butt since he realizes he’s been overmedicating someone and possibly giving him heart problems. Oh the anger I feel. Let me tell you. Well, actually I won’t. I’m sure you can guess.

So we left the psychiatrist's office with the plan to skip last night’s dose, then tonight start to take just 50 mg per day. He will have his levels checked on Friday. Since the half-life is only 24 hours, he should be within therapeutic range. We will keep him on the 50 mg dose for a few weeks to see if he feels it helps at all, and if not, he’ll stop it completely. The psychiatrist doesn’t “need” to see him back, but we’re going to follow up in March and see how things are going.

So now some of you may have pieced another thing together...the medication Nevaeh will be on is in the same family of medicines that this Imipramine is. Thus the EKG. So now when I hear from her pediatrician as to her EKG results, I’m going to discuss my concerns with her. Most likely if we simply check her labs regularly (as should have been done with Jon), it will be okay. We’ll see.

It just blows my mind that Jon’s family doctor was obviously medicating him all these years with this medication that he didn’t know how to properly monitor (which is why he ended up at the psychiatrist last night!) and could have killed him!!! But hopefully, maybe, he’ll feel better overall with this toxic level of medicine out of his body - and now I’m praying that he DOESN’T have a heart problem - most likely from these meds, because that’s been mentioned that maybe he’s falling because of an irregularity with his heart and I wasn’t worried before because I thought heart problem? Wouldn’t that be more obvious?? Well, now I see where the heart issue is coming from. And it’s scarier than ever.

So keep praying.