AnthonyCarrol

Yes, I have a 3 year old CDH survivor and the slightest colds affect his breathing. He has to be hospitalized at least once a year especially during flu season. I haven't experienced scoliosis or lack of appetite but I definitely know the affects of reduce lung function when being sick.

Hello Anthony! My CDH son is only 16 months old. He had a CT scan done in April for a right lung lesion and I said to the doctors that his spine looked slightly curved but they said it was from how he was positioned but they put it in his chart to reevaluate when he gets older. He also is the opposite of most CDHers as he eats EVERYTHING and is starving all the time but of course doesn't gain weight from it.

Originally Posted by Whitney T

Yes, I have a 3 year old CDH survivor and the slightest colds affect his breathing. He has to be hospitalized at least once a year especially during flu season. I haven't experienced scoliosis or lack of appetite but I definitely know the affects of reduce lung function when being sick.

hi Witney,
they defo get stronger (better able to fend off infections) as they get older but it still breaks your heart when they get sick

Originally Posted by FeleciaWoodruff

Hello Anthony! My CDH son is only 16 months old. He had a CT scan done in April for a right lung lesion and I said to the doctors that his spine looked slightly curved but they said it was from how he was positioned but they put it in his chart to reevaluate when he gets older. He also is the opposite of most CDHers as he eats EVERYTHING and is starving all the time but of course doesn't gain weight from it.

hi Felecia
thank you, yes they told us that in the early stages of Elanas recovery too (about the curvature), but we forgot all about it as they never brought it up again til this year when she was 11. I hope your son keeps eating like that as Elana lost the swallow reflex due to the tubes being in for so long and she never drank from a bottle, and never regained her swallow fully and she is a nightmare to get to eat food as she cant chew and swallow like normal people she has to swallow the contents of her mouth in full and cant swallow it in pieces, shes also on supplements aswell as eating adult sized portions at meal times and she is like a stick insect lol.

The scoliosis thing.. I only found out b/c I read it somewhere, not b/c of a doctor. We take our 5yo son to a chiropractor and he is the one monitoring for it. Our son only has one functioning lung so it is constantly being monitored.

Hello my name is Cassi tomorrow is my 26th birtday I am a CDH survivor. I have scoliosis and my eyesight is horrible. I had six- seven cdh surgerys before i even got to go home. They had a feeding tube going in my stomach to feed me i wear the scars proudly. Ten years ago i grew a syst behind my left ear well when they put me to sleep some how after a day and a half the scar tissue in my intestines started to swell. I ended up losing two feet of my intestines they told me ten to fifteen years later i may have to have more removed. Im not sure about the scoliosis being an effect but make sure to notice any kind of swelling in the intestine area. Please comment

Originally Posted by Donna Stolz

The scoliosis thing.. I only found out b/c I read it somewhere, not b/c of a doctor. We take our 5yo son to a chiropractor and he is the one monitoring for it. Our son only has one functioning lung so it is constantly being monitored.

how often do you visit the chiro? and (may seem a stupid Q) with just the 1 lung, how is he doing?

Originally Posted by Cassi Clark

Hello my name is Cassi tomorrow is my 26th birtday I am a CDH survivor. I have scoliosis and my eyesight is horrible. I had six- seven cdh surgerys before i even got to go home. They had a feeding tube going in my stomach to feed me i wear the scars proudly. Ten years ago i grew a syst behind my left ear well when they put me to sleep some how after a day and a half the scar tissue in my intestines started to swell. I ended up losing two feet of my intestines they told me ten to fifteen years later i may have to have more removed. Im not sure about the scoliosis being an effect but make sure to notice any kind of swelling in the intestine area. Please comment

hi Cassi, a belated happy birthday you seem to have been through the mill, and must be a right battler and I take my hat off to you. you should be very proud of your battlescars. my daughter doesn't seem interested in hers as ive brought the subject up a ffew times and tried to discuss what shes been through, but as I say, she isn't really interested, in her own time I suppose. what age did you start having probs with your eyesight? what reason did they givefor the swelling of the scar tissue and was it as a consequenc of the cdh?

Hi just wanted to know how your daughter is doing.I have a 12 year old cdh survivor she has one lung.She also developed scoliosis n had growing rods put on.Right now we are waiting for the fusion surgery n I don't know what to expect of the surgery.