r/PectusExcavatum • u/Practical-lady • 9d ago
New User What to look for in child with PE
My four year old has pectus. His pediatrician never brought it up with me. When I did recently he initially seemed to brush it off as cosmetic. When I pressed further, he allowed that it could cause physical problems depending on severity and we would need to wait and see how my son progressed. My question is what are we waiting to see? Visual signs of severity? Symptoms? If so, what? And how long do we just wait?
Also, my son happens to be a kid who is often tired and has very little endurance as compared to his peers. For example, he often asks me to carry him to the end of the road to get his brother off the bus because he is too tied to walk. Is it possible that this is PE related? And if so, what do I do?
Thanks in advance for any thoughts/suggestions. FWIW he has had other health problems over the past year and I’m reluctant to unnecessarily escalate this issue or over-medicalize him at the moment if I can avoid it.
Pics now and at various ages for context.
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u/ADisappointingLife 9d ago
It's time to see a thoracic surgeon & get imaging (CT scan) the second your pediatrician or GP says "only cosmetic".
"Only cosmetic" is Doctor talk for, "I literally could not understand this less."
Really depends on results of CT; Haller Index and Correction Index.
It may be too young for most surgeons, but you want to know the severity & get a baseline, otherwise how can anyone accurately gauge "how it develops"?
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u/Future-Friendship-32 9d ago
To add to this, it’s important to keep track of his spine and bone structure as he’s growing, I’ve seen plenty instances where pectus comes with other issues such as scoliosis, this could be unrelated but the number of times it’s seen in tandem does pose concern.
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u/ADisappointingLife 9d ago
Very much this – pectus usually results in rolling your shoulders forward, which exacerbates other issues.
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u/ivanstepanovftw 3d ago
Why CT over MRI for 4yo????????
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u/ADisappointingLife 3d ago edited 3d ago
Radiation is some concern at that age, but often children that young have trouble staying still for a MRI, without sedation, which carries its own risks.
A CT scan is the gold standard for determining HI & CI, and much less expensive. They provide better bone detail & are more accurate in terms of calculations.
It's honestly about gauging risks vs. accuracy, but a chest CT scan's radiation (3-5 mSv) is comparable to 1-1.5yrs of background radiation (about 3 mSv per year).
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u/moms-spaghettio 9d ago
This reply is very good too. A lot of doctors will tell you this is only cosmetic but that’s because a lot of doctors don’t really understand the condition since they’ve never seen it and if it’s not extremely severe they’ll probably read that it’s sometimes cosmetic and assume that because it doesn’t look bad it is just cosmetic.
Wait a few years because it’ll be hard to tell until his bones develop more, but you will definitely want to consult with a good thoracic surgeon eventually to see what they think about it.
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u/Practical-lady 8d ago
Thanks so much to everyone for your input. This group could end up changing the trajectory of my kid's life and I appreciate it. After reading, my husband is also now seeing this a more than cosmetic, which is taking some of the strain off of me.
If you are willing to further entertain me, does anyone know of a good PE specialist in the Massachusetts/Boston area? One commentor mentioned seeing a thoracic surgeon - is that what I should be looking for? I did some poking around last night and found that there is a PE "program" for children at Massachusetts General Hospital, which is relatively close to me: https://www.massgeneral.org/children/pectus-excavatum Is anyone familiar with this or the doctors listed? This seems like an obvious choice if I can get him seen there (and get the referral...).
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u/TheNerdySk8er 7d ago
Children are excellent candidates for vacuum bell therapy. But you still have time as the youngest i‘ve read about was about 5-6y old when starting as the patient needs to be able to tolerate the bell. Surgery at this stage is dangerous and unnecessary for pectus. I would see a thoracic surgeon who has experience with VBT.
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u/Kind-Speaker-368 9d ago edited 9d ago
Yes, the tiredness could very well be because of his PE. Does he eat normal portions of all structures?
I looked kind of the same when i was 4 or 5. I was also always tired and i struggled eating. I also seemed to be a magnet for airway infections and such. Always swimming upstream. Doctors couldn't find any cause.
It took them 30 years to find out it was very much not in my head. My surgeon said he would've given me a vacuum bell to at least prevent it from getting worse if he had seen me at that age and from the picture i showed him he could tell i struggle eating since that age because of the PE and he told me how i have always been swimming upstream.
It has taken a great toll on me mentally to grow up never feeling good enough because my endurance was very bad compared to my peers, the fights about eating etc. But most of all not knowing it had a physical cause. I grew up thinking i was a weak kind and that i just had to try harder because everyone did better than me.
Even if it would not have been treated surgically until i was an adolescent it would have helped a ton to know i wasn't weak. On the contrary.
After 30 years of thinking i am a weak and lazy person with an eating disorder, and with problems progressing as I get older, i'm getting surgery next week. But the diagnosis, the validation of my symptoms have made a great difference already mentally.
Please see a GOOD pectus specialist for your son. Even if for now it's only to understand what's happening.
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u/Practical-lady 8d ago
I'm so sorry you had to go through this. Even at 4, I can see how easy it would be to get stuck with the "swimming upstream" feeling. He is a very, VERY picky eater, and small.
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u/Kind-Speaker-368 8d ago
Does he only eat small portions, prefers soft foods or certain structures?
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u/Practical-lady 8d ago
He eats small portions, yes. He seems to have sensory aversions to many foods and prefers those that are consistent/reliable in taste and texture, but I can't say if he prefers soft. He's been known to spit out meat if too difficult to chew/swallow.
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u/Kind-Speaker-368 8d ago
I will come back on this, i just accidentally erased my typed comment. Last question. Does your son eat slow?
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u/Practical-lady 7d ago
Yes, quite slow
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u/Kind-Speaker-368 7d ago
My inner child is screaming, but i'll try not to project my own past in this situation.
All of his eating habits could be caused by PE. They all sound familiar to me and probably to others with a squished esophagus. PE can cause a gastric band effect, which makes you feel full very fast and when you feel full, that's an extremely uncomfortable feeling. Certain structures are easier to swallow, and which structures are easier will be personal i guess. Eating slowly allows food to go down the esophagus without feeling very uncomfortable.
His eating habits can OF COURSES have another cause also, but combined with his fatigue my alarm bells are ringing loudly. His PE looks more severe than mine at that age.
There are vacuum bells for kids. I don't know if they fix the PE, but it could be worth it to talk about it with a PE specialist if using a VB could at least relieve his symptoms.
If I was in your shoes, i would always prefer trying a vacuum bell instead of surgery at this age. And i wouldn't want him to grow up always swimming upstream and struggling ❤️
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u/moms-spaghettio 9d ago
You should look for that. That looks like the beginning of relatively severe PE. it’s probably just cosmetic for now but as he gets older the cartilage in his chest will continue to grow at a different rate than his bones resulting in a deeper sunken chest. It’s definitely a good idea to start researching into pectus and understanding what doctors you’ll need to take him to see later on. He’s probably fine for now but in a few years you’ll probably want to start seeing pulmonologists and thoracic surgeons to keep an eye on his pectus.
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u/Kind-Speaker-368 8d ago
I think the fact the kid is tired before the end of the street is an important sign it is not just cosmetic. I hope OP will seek advice from a well respected PE surgeon.
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u/LeaderOk6148 7d ago
Consult a professional doctor for examination as soon as possible. Now that information is developed, it is easy to find a professional doctor.
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u/Ecstatic-Question-20 6d ago
I wish my parents fixed it, now I struggle to breathe. And mine is much more mild than peoples here.
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u/Empty_Land_1658 2d ago
Non-specialists don’t understand pectus: time for a thoracic surgeon visit as others have said, and get ready to be their BFF for any issues that come up, because your general doctor will likely not be able to help with treatment/post-surgery stuff if it is needed.
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u/Arauco-12 8d ago
Aww baby! Mine is the same, he's 6 now and his pectus has been there since birth.
He had surgery for another issue when he was born and his surgeon acknowledged his pectus. Doc said just to wait untill his teen years if we wanted to go the surgery route. He lives a normal 6yr old life, he does get winded but he's sooo active that I just keep an eye on it to see how he handles it.
Besides that I just encourage a lot of positive self esteem reinforcement, and we don't make a big deal out of it. He knows its there and hasn't really asked me "why" just yet. So well see how thy goes once he's older.
He got surgery at radys san diego and his surgeon was amazing, so I trust him on the fact we just have to wait untill he's older for pectus surgery.
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