My grandson has Pectus Carinatum
Posted , 21 users are following.
My grandson has pectus carinatum and I have tried to find a group helpline of people who have the same problem as him. There is a patient chat line in America but it would be good if he could get feedback from someone in England. Most of their post is from sufferers with pe not pc as well. He will be having the operation this year. He's 18. There must be loads of you out there with no-one to talk to having the same problems.
0 likes, 33 replies
louisjc
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alison76929 louisjc
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michelle30151 alison76929
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My almost 17yr old son is 3 weeks post op for PC ,done on nhs , amazing results , minimal scaring and doing very well !
alison76929 michelle30151
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Thanks Michelle, that's fantastic to hear!??
louisjc alison76929
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lisa57314 sheila_nan
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pcmom sheila_nan
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Have you looked into Bracing? After much research, we found a few specialist who could help my son's PC with a chest brace. He was 14 1/2 and was still eligible for the brace. It was intense for the first 4 months but we saw a huge improvement and he had to wear the brace less and less. I'm glad we took the time to look at all our options before deciding on the treatment. After 8 months his PC has been corrected and is not noticeable to the untrained eye. Treatment time is different for everyone. Our specialist is in the States Pectus Joe (Pectus Services). He travels to different states (East and West Coast) helping children with PC. He is a very kind soul who just wants to help kids get over their condition. He has helped our son so much with his self-esteem that I want to share this information with those afflicted and I hope it will help some of you. We wish your Grandson and everyone luck in finding the best treatment that is suitable for their condition.
applecrisp pcmom
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Hello. My son was just diagnosed with PC. We got his first brace from WestCoast Bracing here in Orlando, FL. However this brace has large rachets on the side and is not very comfortable to wear and therefore he doesn't like to wear it. We have made an apt with Joe at Pectus Services but was a little shocked at how much it costs. How did your son feel wearing the TJOE brace? Was that the first brace that your son used? Thank you.
pcmom applecrisp
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Hello! So sorry, I didn't get a notice about your message until today. My son only used one brace - TJoe Brace. Wearing the brace was very uncomfortable for my son the first week and it eventually got better. He was determined to go through with the treatment because of the ridicule he received from kids at school. Wearing it DILIGENTLY really made a difference and you can start to see results after a month. Wihtin 4 months there was a HUGE improvement and he could wear the brace for less amount of time each day. We felt it was worth it because surgery was so invasive and costly. Feel free email me directly for faster response: We would love to give info about our experience with PC and bracing.
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alison76929 applecrisp
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Hi, sorry, have just seen your post. My son is now 8 months into the bracing and only wears it for about 12 hours a day now. It has worked so well. I know it's expensive but we felt it has been worth every penny. He had never worn a brace before and although it was very painful for the first few days that did wear off. During winter he found it uncomfortable as the metal conducted the cold but overall we felt the discomfort was worth it. Hope that your son find Joe as lovely and helpful as we did. Alison
alison76929 sheila_nan
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Hi there, just come across your post, I hope your grandson had the operation successfully. My son has recently had the brace fitted. It's early days but showing real promise.
sue47613 alison76929
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Really reassuring to hear your sons progress. My nephew from abroad has PC and has an appointment to see Dr Hunt in the Autumn for a brace. Hoping things turn out okay for him too.
alison76929 sue47613
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The pectus had completely gone now... There was still a bit if flaring on the ribs but at about 6 months the brace was changed to accommodate this. Cannot thank Joe, dr hunt and the pectus clinic enough.
tucker52760 sheila_nan
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pcmom tucker52760
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Hi Tucker, I saw your post and would encourage you to talk to your parents and explain to them that this is important to you. Tell them about the insecurities it causes and how it affects your self-esteem. It is also VERY IMPORTANT to get the brace before you are fully grown. Do some research and show them that it's important to you. If possible move your appointment up. The sooner the better. Your doctor can determine if you are a good candidate with an evaluation. Our insurance only covered a few hundred dollars for the bracing, however, our cost for the whole process - the brace and check-ups was less than the cost of braces for teeth and most parents are willing to pay orthodontic braces. We were able to make monthly payments for the treatment. The brace is not too noticeable if you wear loose fitting clothes. For the first 2 weeks, my son had to wear it for 23 hours a day. After that the specialist said he could wear it less and less. He was determined and was very diligent about wearing it so had great results (quickly too). Because of his diligence, the duration of treatment was less than expected. I hope you get the support you need. I'd be happy to share our experience with you. Good luck!
martin35478 pcmom
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