Pectus Carinatum

[Mum of a Monkey]

Hi all,
I was wondering if there is anyone out there who has or knows someone who has the condition called Pectus Carinatum?
My DH was diagnosed with this during his early teens.


What causes pectus excavatum / carinatum?
The deformity is thought to be caused by excessive growth of the costal cartilages although the reason for this is unknown. This overgrowth causes the ribs and cartilages to 'buckle' and pushes the sternum either inwards or outwards. Musculoskeletal abnormalities that are associated with pectus deformities are scoliosis (lateral curvature of the spine), Marfan's syndrome (an inheritable disorder of the connective tissue) and Poland's syndrome.

The only thing he was told by Drs is that he doesnt have Marfan's Syndrome, or any other congenital syndrome. He doesnt have it very bad, certainly nowhere near as bad as the poor people whos photos come up when you google this. One of the most noticible things about his condition is that his ribs flare quite a bit at the bottom of his rib cage. I noticed that my 6 month old DS's ribs also flare quite noticibly now. I have been keeping my eye out for this and I have only noticed it in the last couple of weeks. I think that he may have inherited the condition from his daddy.
I am going to be taking DS to the Dr this week, but I was wondering if there is anyone else out there with this condition? I would love to hear from you. Feel free to PM me if you would prefer.

Thanks,

Alesha

[my2boyz]

I was just checking my replies to my post about my son and read yours.

I have no idea about this condition but you are doing the right thing by getting it checked out. My DH family have a lazy eye history and both my sons have one. DS1 so bad he is getting operated on in Dec/Jan coming. And he actually has alopecia too!(not sure about that one though)
So if I were you I would keep an eye on it, its funny how genetics and things work.

On a positive note though, you could just be overly worried as your DH does have it and it could be nothing. I hope all goes well for you at the doctors.

Stay positive, best of luck.

Em

[Ky]

My friend's ex husband and her 6yo son both have this condition.

Her ex doesn't seem to have had any problems because of it, but her ds has recently been asking if he needed to go on a diet because he was so fat! The poor kid is seeing his pot belly as being fat and has been teased at school. He is actually almost underweight and it is only the way he is built which has given the kids this perception.

She has explained to him that he is just like his Dad and that his Dad is perfectly ok and not fat, so he must not be either. He seems to have accepted her explaination, but I'm not sure how fully as he seems to remain very sensitive about his chest and tummy.

My dd just thinks her friend is a wonderful boy and keeps telling him that she thinks he is a "very handsome boy, just like her brother" ... she has such a sweet nature and hates to see her friend hurting.

I hope that you and your boys get positive results from your doctors visits.

Take care

[kdmid]

Hi There

Just logged on and noticed your Question about Pectus Carinatum or PC as I call it!

My 2 yr old daughter has recently been diagnosed with this condition. I have really been researching it as as yu probably know PC is extremely rare. Its also even more rare in small children and even more rare in girls so I have found the PectusListserve site realy hepful! There are lots of other parents whos kids have PC and also PE(Pectus Excavatum) and they are more than wiling to share there experiences with you.

PC is realy nothing to be scared of although if severe it can affect the lungs capacity and on occasion apparently sometimes move the heart to the left or so ive been told. Mostly PC is just a pain that really affects the persons opinion of themselves. The best you can do for your son is reassure him that he is normal and just like his DADDY! If the PC gets severe and it will comtinue to develop there are procedures to correct it. There is a surgery that can be done however it seems quite drastic and painfull! We arre currently looking at going to the States to have a brace made for our daughter its worn about 16hrs of the day for 18months or so and works just like braces on your teeth. We think anything to avoid surgery is worth a go! Any way Check out that site you never know your sons PC might seem minor in comparison to some of the cases out there ar maybe you might find yu want to corect it. Feel free to email me if you wanna know any more about it.








ME:24
HUBBY:34
#1= 5and a half
#2= 2
#3=3months old:ecomcity:





Hi all,
I was wondering if there is anyone out there who has or knows someone who has the condition called Pectus Carinatum?
My DH was diagnosed with this during his early teens.



The only thing he was told by Drs is that he doesnt have Marfan's Syndrome, or any other congenital syndrome. He doesnt have it very bad, certainly nowhere near as bad as the poor people whos photos come up when you google this. One of the most noticible things about his condition is that his ribs flare quite a bit at the bottom of his rib cage. I noticed that my 6 month old DS's ribs also flare quite noticibly now. I have been keeping my eye out for this and I have only noticed it in the last couple of weeks. I think that he may have inherited the condition from his daddy.
I am going to be taking DS to the Dr this week, but I was wondering if there is anyone else out there with this condition? I would love to hear from you. Feel free to PM me if you would prefer.

Thanks,

Alesha

[boysrule]

Hi Kdmid

My 2.5 year old son has mild PE. I was curious if you went to the States and got the brace - did this help your daughter?

Are there any "experts" in Brisbane that you have found who can advise about these conditions. I am not sure about surgery but want advice on how to minimise its appearance especially as he gets older. I think there is a bit of impaired lung compacity??

i have been ont he net a fair bit and have heard of the brace. Would be interested to know of any worthwhile contacts.

Hope your daughter is doing well.

Cheers

[pas]

My son has pectus carinatum. He is 14 years old and has been fitted with a brace since the end of April 2010 with marvellous results. There is only one place in Australia to have the brace fitted and that is Royal Melbourne Children's Hospital, Orthotics Department. He wears his brace for about 20 hours a day, taking it off for all his sporting activities and bathing. We returned to the hospital for a check up after 2 months and his chest is almost completely normal. He will keep the brace on for another 2 months for 20 hours a day and then reduce it to about 16 hours a day for another month or two before we return for a check up. It costs about $500 which includes the brace and all check ups and brace adjustments etc. The biggest outlay for us is the trip to Melbourne and associated living costs. But next time we will fly down and back on the same day. The staff are all wonderful and they will explain how the brace works. It is well worth the outlay. The only catch is that your child must make the decision to wear the brace diligently for the best and quickest result.

[boysrule]

HI

My son is 4 and has this condition, I am interested in how you got referred to the Childrens Hospital in Melbourne and who is the specialist. I would be interested in having his chest assessed and implement anything that may help (he is already aware that his chest is different to his brother)

Does the brace fix the conditon permanently or can it reoccur once the brace is not used regulary?

I hope your son is doing well and would be interested to know further details as there doesnt seem to be anyone in Brisbane who treats this type of condition.

Thanks

[pas]

I found out about the Royal Children's Hospital in Melbourne in a roundabout way. I went to see a local physiotherapist who did some websearch and found that bracing was done in the US and Brazil. She told me to do some research. So I contacted the Orthotics and Prosthetics Assoc Australia and they sent out an email to all members and I got a response from one who put me onto the hospital in Melbourne! I contacted the Orthotics Dept direct. If you ring them they will give you the name of the orthopaedic surgeon based there who was responsible for setting up the bracing method at the hospital. I have not met the doctor.
As your son is still very young, I don't know how the bracing would work. My son's condition only became very noticeable when he reached puberty and went through growth spurts. The hospital said this is the best time to use bracing. I recommend you call the orthotics dept and have a chat with them. My son is doing extremely well. There is now no sign he has pectus carinatum. He will wear it almost fulltime for another month and then we will reduce the time to about 16 hours for another month before our next visit to the hospital. As he is still growing, the length of time he will need to continue wearing it in some form is still to be monitored.

I don't know of any other place in australia that does the bracing. Apparently the bracing started at the hospital at the request of a parent who knew about the braces made overseas. It would be worthwhile talking to them as they treated many pc children with success. Good luck and regards.