PLEASE! 20 month old with PECTUS EXCAVATUM!!

[blair4385]

PLEASE! All doctors read this! I have a 20 month old son with Pectus Excavatum. I am seriously worried about my baby. For one thing I took him over a year ago and expressed my concerned about his chest moving inward when he would inhale. I was told that this is normal and he would grow out of it. So a couple of months ago I told them he has not grown out of it and his chest is sucken in and in moves inward when he inhales. They diagnosed him with Pectus Excavatum. Here is my concern, every patient with this deformity doesnt have the movement of the chest/sternum like he does. The only thing they did with him were x-rays. Nothing more. Im not satisfied with this and Im worried for his life, everyday I pray that God will keep my child safe. Please I need a doctor to give me some advice here. Im stressing out! Is his chest moving inward a big cause for concern?? They said the x-rays shows it isnt putting pressure on his heart or lungs, but how can they know that his heart isnt in distress without proper test....I really need some help here, Im begging any medical professional that has answers to please help me with this!

[Kirstin88]

My son also has worsening Pectus Excavatum, he was diagnosed at roughly 6 months and was reviewed at 9months, we were sent for X-rays also which showed that there was no real significant cause of concern but my sons peadiatrition looked at the X-ray and said that there was possibly an issue with his right lung being slightly smaller then his left and that he wasn't overly concerned but referred us to a top children's hospital in our area ( we are in aus) to check his lung capacity (we have been waiting to be seen for 18 months as it isn't a 'life threatening condition' we keep getting pushed back on the waiting list but we do finally have an appointment now in approx 8 weeks

[mamawith2girls]

You're very welcome! I enjoy talking with other moms about this stuff as well. It seems that many doctors view PE as a cosmetic problem with some psychological issues in the young adult because of body image. But it's a birth defect so I don't know why they are so blase about it. Probably because it doesn't cause many problems unless it is severe, but one can blame a parent for being concerned about a birth defect, know what I mean?

Anyway, I'm sure your boy will be just fine. (((HUGS))) Take care!

[blair4385]

Hey, thank you for responding to me! Its so nice to talk to other mothers/parents with children who have this. Ive done so much research on this and everything you said is familiar to me. Its so hard not to worry about our babies! I watched the video of your daughter, her's seems to move inward too at that age, maybe its because like you said there bones are not hardened like our are yet. It still worries me constantly! And my son also has a pot belly because his bottom ribs protrude out a good ways, his PE is always noticeable and when he inhales its very noticeable. Im assuming his is between mild and medium, no one has told me. Its driving me crazy lol. Again, I really appreciate you so very much and hopefully we can keep in touch. With all the research Ive done it seems as if this is something that is still being "developed" in the medical world. With doctors being contraversal on the subject of pectus excavatum. My hope is to find a doctor who will want to look into as much as I do

[mamawith2girls]

Here is a video of when we first noticed her PE...you have to look pretty close cause she's moving around, but you can clearly see her chest sucking in. Hope this helps.

http://s181.photobucket.com/albums/x268/michelleysbelly_2007/?action=view&current=100_1601.mp4

[mamawith2girls]

Hi!

I have a 4  year old daughter who was diagnosed with a Pectus Excavatum when she was about 9 months old. I remember how scared I was when I discovered it, so first of all, huge hugs!!

My daughter's is considered mild, but when she lays down, it is much more noticeable. Her chest also ***** in a lot. It doesn't suck in as much for older patients because in babies their chest wall is much more pliable. That's why doctors do not get concerned about PE until the patient has gone through their growth spurt and their bones harden.

I was told the exact same thing as you....that it is nothing to worry about, it will be outgrown, etc. However, upon doing research, I have found the opposite to be true, in that, if it is NOT outgrown, it can get much worse during the teen years. So while it may not be anything to worry about now, it is something that you want to have followed up on every few years. Is your sons mild, moderate, severe?

There has been some evidence that it does reduce lung capacity ever so slightly, and that it can cause some exercise intolerance, but it doesn't hold my daughter back at all, LOL.
It is much more common in boys and can run in families.

My daughter's is not familial in nature, and for that reason, I have continued to worry...not because of the pectus itself causing problems, but for the fact that is some very rare cases, it can be associated with connective tissue disorders. She also looks bloated all the time because of how her ribs protrude.

My daughter has other issues that make me wonder about this, but if your son is otherwise completely healthy, than you really should try not to worry too much. It goes by so fast, their childhood.

You are luckier than me. My daughter has never even had an x-ray!! But she has been experiencing some issues with what they are calling vasovagal episodes where pain or illness triggers an altered state of consciousness from low blood pressure. As you can imagine, my first instinct is her heart and her pectus excavatum. But I've been told, NO, it's not from that. But  I still wonder, and I am hoping to look into this further at her next pediatrician appointment.

My best advice is to keep a keen eye on him. Document with pictures every year so you can compare them as he grows. You know at this point it is not interfering with his heart or lungs. It usually only does if it is considered severe. Speak with his pediatrician about your concerns and perhaps you can work follow up into his annual well checks for peace of mind, but really, you will know when there is something really wrong. (((HUGS)))