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Monday, February 23, 2009

pectis carnatium

Today is a Manic Monday.

It's the start of what usually ends up being a very long week with the kids, appointments, doctors, paying bills and trying to get some writing done.

Bad things have always happened to me on Monday, and it's the day I mostly lose my mind (okay not true) I lose my mind most days but some of you I know can relate to me. So this Monday was definitely Manic.

It all started Sunday night when JR came downstairs long after his bedtime at around 10:30 pm. He said he couldn't sleep. He said his chest was hurting him, and immediately my alarm bells rang out.

About six to eight months ago JR came home from school after doing cross country and said his chest hurt. We noticed he had a lump. Actually it wasn't a lump but rather his chest bone was sticking out. It felt strange and looked even stranger. Of course we took him to the doctor right away, who then sent us to the hospital for a cat scan. We were told that he had a normal disorder common in many kids where his breast bone was growing this way and the rest of his body needed to catch up. Nothing to worry about.

Yeah right--whenever a doctor tells me it's nothing to worry about I feel like taking them and flipping them upside down, pulling down their trousers and giving them a damn good spanking for lying (instead) of just saying they don't know WTF problem my son does have. I realize doctors are human but why do they have to lie?

Anyhow we (DH actually) trusted the doctor's advice and life went on as usual. This time though after JR complained, I wasn't about to take any more chances. The protrusion looked bigger and if his breathing had become impaired then I had reason to worry--didn't I?

So off to the new MSA or rather Abbotsford Hospital we went. We got in fairly quickly which should have been a sign because once we were inside, we ended up waiting five hours, ten dollars in parking later, two starving children only to have a doctor come in for two minutes and say "I looked at the x-rays of your son's chest and he's fine. I don't think his breathing trouble has anything to do with his condition in the chest..."

Condition? What condition? He has a name for it? I raised my eyebrow and asked immediately. What is wrong with him? That's when he wrote down on a piece of paper PECTUS EXCAVATUM which later after looking it up online is a latin word meaning (hollow chest).

JR doesn't have that!Pectus Excavatum (Hollow Chest)

I felt like screaming, pulling out my hair, taking a baseball bat and going back to the damn hospital to hit the bloody doctor in the ankle hard enough to break it and then look down at him and say it's not broken it's just inflamed!

Pectus Excavatum is when the chest curves inwards due to the sternum being pushed back toward the spine creating a hollow effect. JR's chest stuck out like a bird. There is no way he has this, I thought. That's when I discovered there is another pectus disorder with the opposite effect called PECTUS CARINATUM, also known as (pigeon chest) caused by a protrusion of the sternum and ribs.
This is more how JR's chest looks where the chest sticks out and ribs.

So how did this happen?

Okay I'm not really sure how it happened or why. It could be genetic I'm told, which later was confirmed by my mother stating my uncle had it. What does it mean for JR? Well it means that on Thursday I'm going into the doctor (which is tomorrow) to demand everything be checked and looked at. I'm not fucking around here (pardon my cussing) but I'm damn angry that not only did this idiot at the hospital misdiagnose JR and spend less than five minutes doing it, but that he so nonchalantly stated it was nothing to be concerned about, that his breathing problems weren't the cause of this and that we should wait to do something until he was fully grown.

FROM WIKIPEDIA: "Pectus carinatum, with the chest wall held in an outward position, may prevent complete expiration of air from the lungs and thus may restrict air exchange considerably. These patients often experience severe shortness of breath, wheezing and occasionally mild to moderate asthma. With exercise, carinatum patients often develop a very rapid respiratory rate.
Some children with pectus carinatum also have scoliosis (curvature of the spine). Some have mitral valve prolapse, a condition in which the heart mitral valve functions abnormally. Connective tissue disorders involving structural abnormalities of the major blood vessels and heart valves are also seen. Although rarely seen, some children have other connective tissue disorders, including arthritis, visual impairment and healing impairment."
Okay and I'm not supposed to be worried? Yeah what the hell ever! What mother wouldn't worry? For Jake everything is about sports. He lives to play hockey, soccer and loves to run. And I realize I will drive myself insane thinking of all the what-ifs, though for me that is just inevitable, it's how I am built. I want some answers.

I want to know what precautions we should take. I want to know about the brace, which is apparently a treatment used on kids JR's age (nine years old) to help mold the breast post and help the sternum grow in place. Surgery is not something I want him to have but if he does it should I read be done now and not later. I want answers. And if my doctor won't give them to me you bet your ass I'll be taking JR to BC Children's Hospital where I will get the help I need.

For now though while we wait. JR is taking it easy. We are going out to buy him an inhaler to help aid his breathing while exercising which seems to be the only time it acts up, and he's wearing protective gear while playing hockey, though I still worry about him getting hit.

Thank God tomorrow is Tuesday!


nac on February 24, 2010 at 2:49 PM said...

hi am 15 and suffer from nahueltengo pectus carinatum if you want to connect'm from Argentina

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