We had the strangest week. I spoke to the cardiologist over the phone, and that caused us to make the (very huge) decision to take Monkeyman to another, 3rd, opinion. It was really, really difficult to do. I have this innate trust in people, and I feel awful when I hurt someone's feelings. Especially someone who I really believe is trying to help my child. Dr-hopping makes me feel like such a paranoid, weirdo of a mom. The looks I get when the dr realises you're asking him or her to sell out one of their collegues.... it's SO difficult, I absolutely hate it.
But, my child's life is on the line. I couldn't just leave everything like it was. I lost a bit of my trust in the current cardiologist, because she worries sooooo much about Monkeyman's emotional well-being. She doesn't want to expose him to too many tests, but keeps on asking us to come back to her every 4-6 weeks. She thinks he has a mitochondrial disease, but doesn't want us to pursue this train of thought futher, until after June. (The specialist is fully booked until then, and to get in quicker with her, we need a referral letter which the cardiologist doesn't want to give.) She (the cardiologist) thinks there might be something up with the lungs, but doesn't want to expose him to too much radiation or unnecessary trauma to make sure everything is okay by performing a CT scan. She refuses to give his diagnosis a name, to label the things that's wrong with him, to tell us more of anything or explain things to us. She told us in Dec to take Monkeyman to a pead if his bloodtests are abnormal again this year. And when it was, she got upset with me when I asked if I should now take him to a pead. (?!)
It got too much for us, so we took the plunge and made an appointment with another pediatric cardiologist. Accordingly to him, Monkeyman is absolutely FINE. His heart, in any case. His heart is normal, nothing wrong! He does think there's something that causes the tiredness, but it's not the heart!!
So how can 2 specialists have such completely different opinions? Well, I don't know. It's actually extremely scary, but I try not to dwell on how that is possible. Yet. So, here's the 2 opinions:
Cardiologist nr 1 says that the left ventricle's wall is something like 5.2 or 5.3. She said 5.8 and upwards is normal. She checked this at least 2-3x that I know of, and remarked once that it was unchanged from one visit to the next.
Cardiologist nr 2 says that the left ventricle's wall is 6, and thus normal!! He checked this once, obviously.
This is huge. Because based on that left ventricle wall, dilated cardiomyopathy can develop, or not. It's a fear for his future, or not. This is really a big deal. How do we now know?? Is it thinned? Isn't it thinned?? Can he play impact or extreme sports or not? Can he play competitive sports? Can he do athletics one day? We should know this! But how?
Secondly, cardiologist nr 1 prescribed beta-blockers and said "this will help for the heart failure" (amongst other things). Now, I wonder if she meant to say it like that. Because he isn't in heart failure. Not at all, accordingly to cardiologist nr 2!!! He told us if it was him, he'd immediately stop giving the medication to his child, since it's unnecessary and I agree with him that you don't give these types of medications when it's not necessary. Also, during our phonecall, Cardiologist 1 said that there are 2 functions, and that the usual one (that indicates heart function) is 61% (which is normal)! It's another function that's 30%. She didn't want to name or explain this any futher. But it made me think, based on the next point here, that this means she didn't mean to say that Monkeyman is in heart failure. That it was a slip of the tongue or whatever, but that she most likely doesn't even realise she said that?
Thirdly, cardiologist nr 1 said the one heart function was 30% and that it should be around 40% and up. That 30% is too low. While cardiologist nr 2 said that that function is 34%, and that's normal. Even if it was 30%, he said it would've still been normal!!! How can 2 cardiologists differ on what percentage is normal or not? I don't know.
Fourthly, Cardiologist nr 1 said that there's something about his lungs bothering her. She took x-ray after x-ray, over a 5-month period. Everytime saying that if it still says "bronchial thickening" next time, she'll do a scan. Then, when it indeed does say that, she backtracks and says things like "we can't put a child through that kind of radiation if not absolutely sure" or "we must be conservative here, else he'll get psychological damage from all these tests", etc.
While cardiologist nr 2 had a good look at all his x-rays, and said there's absolutely nothing wrong with them!
So why would one cardiologist differ so much from another? And who to believe? We've spent around R10 000 on cardiologists in less than a year (that's about $900). This does not include all the blood tests, the x-rays, the medication, everything else. And not even close to what we've spent on Boeboe's tests and evaluations and visits!! Which has absolutely no end in sight. So to go for another cardiology visit... it just ain't feasible at this point.
So ya, where does that leave us? Well, firstly, I believe Monkeyman IS NOT IN HEART FAILURE!! Whoohoo!!!! That's the best best best news ever!
Unfortunately, I'm not as sure about the dilated cardiomyopathy heart wall thinning. Cardiologist nr 1 spent about 2hrs with us during the first visit, and there-after 1hr times 3. Which means a total of at least 5 hours. A big chunk of this was spent on an echo everytime. Cardiologist nr 2 was late after an emergency, and spent much, much less time with Monkeyman. Maybe, I guess, about 1hr, of which about half of it was on an echo. I haven't seen him go into the certain M2 view (I think it's called) that cardiologist 2 used to measure that heart thinning.
So I'm not sure. I trust this cardiologist 2. He seemed so self-confident. So sure. He was extremely nice. And seemed to be on a similar page to me. I would've been able to walk a road with this doctor. There was just something in him that made me believe him, and trust him.
Quite a dilemma. But, somehow, I'm STILL happy and relieved!! Monkeyman isn't in heart failure, and that's all that matters to me at THIS moment. Yes, tomorrow or next week I'll start to worry again if the heart wall is now really thin or not. And if a 30% function of that one measurement is now really normal or not? But for now, I'm just really, really, really happy that Monkeyman's heart looks actually good enough to either be completely normal, or to fool a very experienced cardiologist into believing it is. So obviously, nothing TOO major is wrong, at this moment at least.
Hope all of this babbling makes sense. Cardiologist nr 1 believes Monkeyman might have an underlying mitochondrial disease. But she wants us to wait 6 months before we investigate this further. Cardiologist nr 2 wants us to go to the pead soon, to rule out metabolic diseases, one of which is Barth Syndrome. He believes it will most likely be negative, but says it's important to rule this out as soon as possible. He believes there's something causing Monkeyman's tiredness and low bloodcount, and understand and agree that we must find the cause sooner rather than later, since it's influencing his ability to go to school. How much can a kid learn that's constantly tired?
This morning, we saw Boeboe's teacher and department head. They were so friendly and open and supportive. I was very relieved, and very grateful. It was a very good visit. I told them that Boeboe's currently under investigation for a chromosomal defect, and that delayed her speech and communication skills. They've put some things in place that will really make a difference to Boeboe and me. They also understood our homework problems, and are satisfied with the decisions me and Boeboe's psychologist made about that. The department head even suggested some more leniency, which I appreciated SO much. I felt like they got it! The one also knew alot about Boeboe's history, and said that Boeboe has overcome so much difficulty in her life, that she has used her as an example for the other kids. :-) This is soooo good to hear!!
She's also said some nice things about Mr N, who's in her class. It made my heart swell with pride and gratitude. We've raised awesome kids!!!
No comments:
Post a Comment