Saturday, November 24, 2007

Confused

Last month after M’s annual cardiology check-up, I was relieved. No leakage in the valve, the aortic root, while still enlarged, was not dilating at a rate greater than M’s overall growth, no meds required. I’d been very nervous about the possibility of an ACE inhibitor or a beta blocker to control blood pressure. Since there was no clear cut indication that such meds would be necessary, I thought we were set for at least another year. The message I heard was one of “good as we can get, keep doing what you are doing.” My husband heard that, too.

At that appointment, Dr. B was sure to check our home phone number against the records and specifically asked for my cell number in case he came across anything in the literature.

Yesterday afternoon, as I was about to get on the erg, I was cleaning up bits of paper on the floor in the study. On my husband’s side of the desk/bookcase unit, I came across a prescription. It was for M, it was for an ACE inhibitor, and it was dated 11 days ago.

I was confused. I was shocked. I didn’t know what it all meant.

I called my husband, who was at work, and asked about it. He said that Dr. B had given it to him at a meeting last week, that Dr. B had been to a big cardiology meeting and that other pediatric cardiologists were starting to do this as part of their standard of care.

By this time, I was in tears. Here we were, facing the prospect of putting an 8 year old on a serious medication, possibly for the rest of his life, and no one had bothered to mention it to me.

I was angry that Dr. B, who specifically asked for my cell number and checked our home number did not use either. He did not discuss this with me, or even ask to have a conference call about it with my husband and me. Dr B and my husband my be colleagues in the same business but I still deserve some respect for my role as the patient’s mother, and a careful medical consumer at that.

I am extremely hurt and angry that my husband kept this from me. That opens a whole ‘nother can of worms that I thought we were done with – and I just can’t go back there right now, at least not in writing here.

As for M, he came into the study while I was searching for information on this drug and he saw my tears. He asked what was going on, and as it directly relates to him and I don’t like to lie to my children anyway, I told him in the most reassuring way I could. I told him there was no final decision on it, that we’d be careful to make the best decision. I told him the tears were just how I found out about it.

Then he asked if he had done something wrong to need the medicine. Poor guy. Smart as he is, he is only eight. I reassured him that no, he had done nothing wrong.

So this prescription sits in front of me. I don’t think we’ll fill it just yet. After a long talk last night, and some searches, we can’t find any clear cut direction uses for M’s diagnosis.

I have so many questions. This isn’t like, say C’s asthma meds that we start and stop throughout the year as symptoms rise and ebb.

Since this years’ evaluation and measurement was so good, the decision doesn’t seem clear cut, so what changed?

What is the goal for the medicine? How much will we expect his blood pressure to drop from what it is now and how will we monitor it?

Where is the data that this is the right thing to do?

What if it isn’t working, or conflicting data comes up? How will we know it isn’t working? What then? If we start down this path, is it for the rest of his life?

Are symptoms of insomnia, nausea and loss of appetite appropriate for a skinny 8 year old boy who already wakes up at the crack of dawn each day?

We’re definitely going to get a second opinion here. As much as I have been pleased with Dr. B’s care of and attention to M’s condition, this feels too big to take on faith.

Meanwhile, I have the side effects for this med without taking anything.

2 comments:

Anonymous said...

Not sure what to say. That is stunning. I agree on the second opinion, and you are doing the right thing by researching this to the best of your ability. Sorry about the way you found out about this.
HUGS.
K

Pantheist Mom said...

I've been waiting on this one to come up with some wise words to share with you, but they're not coming to me. This sucks in so many ways. I hope you and DH are able to talk through the mistakes made in getting this information to you. You need him with you on this right now.

Whatever direction you take with M's treatment, he's being well watched, so that's a good thing.

((hugs))
Jen