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Thread: pectus excavatum

  1. #1
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    pectus excavatum

    I have a 16mnth who was born with funnel chest which everyone said was "normal" and nothing to bother about.. so ive never even looked it up until I had him at the doctor for somethng else and she has refered us to the hospital. The app isnt going to be for 3months and looking on the internet im worried!

    the dip in his chest is pretty obvious but he has quite a big stomach which i think makes it look worse. however you can barely notice it when he is lying flat on his back or when he is breathing out and he has always been healthy??? doctor listened to chest-i didnt know they were symptoms to ask but assume all is well as she never mentioned a problem and said hosp app would be a non-urgent app.

    what do they do at the hospital? x-ray? just have a look?
    every web page i look at talks about surgery.. is this always needed? if he has no heart/breathing probs can he just live with it?
    have seen people saying they had the op at 5/6yo.. is this likely or will it happen (if required) when he is grown up?

    really worried that he will need a painful op.. anyone any advice?

  2. #2
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    All I can tell you is my twins daughters had a moderate case of PE as toddlers which resolved completely by itself in adolescence.

    I don't know the stats on the incidence of complete spontaneous correction but it's at least two baby kids.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    everything ive read online seems to point to it only getting worse. thankyou its reassuring to know that it can fix itself sometimes- hopefully hell be one of the lucky ones! dont know if internet is all just worst case senarios?!!

    having read some of the other threads on the forum.. i dont know how people cope with having to face all those ops/treatments for their children.. must be heartbreakingly hard!!

  4. #4
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    I'll try to find and send you a picture of my kids when their PE was very noticeable. They also had... ahem... rather large tummies that preceded them into rooms and such. I secretly suspected they were taller laying down than standing up.

    There is no trace of it now at 14 yo... ETA: Either the PE or the tummies!
    Last edited by Pooka1; 02-13-2009 at 04:03 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    that would be fantastic.. ive no idea if it is mild or severe so would be great to see. got a phone app with doctor to see if she can advise but she had to google to get the name so im not too hopeful

    were your girls lucky enough not to have any problems with breathing/heart etc?

  6. #6
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    They didn't have breathing or heart issues.

    PE sometimes is associated with Marfan's Syndrome when other symptoms including scoliosis are present. So they get their aorta imaged every year for the next several years despite the PE resolving long ago.

    The pediatrician characterized their PE as "moderate." I'll go look for a picture to scan now...
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    have looked into it a bit.. have never noticed anything wrong with his spine, is that the kinda thing i would definately notice if he had it?? was kinda discounting marfans as main characteristic seems to be tall, skinny with long thin fingers etc which he isnt (hes quite chunky)

  8. #8
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    The tall/skinny description pertains to teenagers and adults. My kids might have it but were chubbos as infants and toddlers.

    Also, my girls did not develop scoliosis until they were about 12 or 13.

    I sent you some private messages (PMs).

    sharon
    Last edited by Pooka1; 02-13-2009 at 06:43 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    If your son has problems relating to PE it probably will not be for many years so you have time to calmly research the condition and possible treatment options which will most likely improve in years to come. I did not notice my sons PE until he was about 12 . Looking back on his shirtless baby and toddler photos I can see it now. Symptoms can appear fairly early when young children play and run hard and maybe are more out of breath or short in endurance when compared to their peers.They may even mention " chest pain ". Often symptoms do not appear until the child has a large growth spurt in which case the PE becomes noticebly worse. Some cases of PE have no symptoms and do not get worse. Unfortunately ,especially in teenage boys and young men, the feelings of being different and " not having a normal chest " are much worse than any physical symptom they experience .
    It broke my heart to see my 14 year old son refuse to attend graduation swim parties because he did not want to bare his chest. He saw a pediatric cardiologist at around age 12. All the tests were normal. A year later after a 4 inch growth spurt his PE was much worse and all the tests,EKG,echo,pulmonary, were now abnormal. He could barely make it up and back the basketball court he was so winded. His PE was asymetric , upper and lower ,his left side was "caved in ". He had Nuss bar surgery at 14 and 2 years later the bar was easily removed. He had grown another 2-3 inches with the bar in . Because his PE was severe and asymetric, many are not, his correction was not perfect looking but was indeed successful.He had tests again 6 months after bar removal and everything was again normal.He is now 20 and a very happy college student who dates, has many friends . I know he wishes he had a completely normal looking chest but he has plenty of confidence to take his shirt off in front of anyone. He also had mild scoliosis which has never progressed or required treatment.
    If your son's PE gets visually worse or he has symptoms find a qualified MD who treats PE and if he eventually need surgery find a doctor with LOTS of experience and who will put you in contact with other families that have been there . It helped us a lot to know what to expect during surgery and after. There are some very good forums for PE. Those folks can help also.

  10. #10
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    Spine Journal Jan., 2009 issue

    "Genetic Linkage Localizes an AIS and PE Gene to Chromosome 18q."

  11. #11
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    Quote Originally Posted by pat View Post
    "Genetic Linkage Localizes an AIS and PE Gene to Chromosome 18q."
    Well that is curious.

    It is my understanding that most folks with AIS do not have PE. When scoliosis and PE present together, a more likely cause is Marfan's syndrome.

    Perhaps it is just coincidence that stand alone AIS and stand alone PE (i.e., not together in Marfan's complex) just both happen to map to that locus?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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