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Posted By : sabrina1983 - 4/23/2015 2:22 AM
Hi all.

I'm newbie. I'm asian and this is a rare disease in my country. Only affected less than 20 people in my country. My son is 18 months and he was diagnosed when he was 1 yr. He had failure to thrive and repeated chest infection. He had twice pneumonia and 1 time pseudo. I am worry about him. He had chest recession even he is well. He seldom cough and he is so active. The recession is worrying me a lot. Can someone explain it ?

Yesterday was his appointment with his medical team and they said my son need to admit in the hospital because his lungs sounds blockage with mucus. Its happened because he don't know how to spit out his sputum.And result from the CT Scan showed that his lungs already had scars because of previous infection. What does its mean? Is his lungs ok? Or in danger? shakehead They recommend to use CPAP machine at night to help him breathe. Does anyone use having this problem before. Can share experience?? Is the CPAP machine really helps?

Plssss..anyone...

shakehead

Posted By : Gemsi - 4/23/2015 4:53 PM
Hi,

So sorry to hear your son is having such a tough time. A CPAP machine they use in CF and Sleep Apnea if you've ever heard of that condition. Something like if you are not breathing strong enough it gives your lungs a bit of a push and boost of oxygen. Sometimes when people sleep too heavily their shallow breathing can cause problems. In CF it's possible that shallow breathing means that mucus builds in the lungs overnight meaning the transport of oxygen and CO2 isn't as efficient as it can be.

I've never had this treatment myself, though a few friends have. A lot of people with CF find they have a really hard cough in the morning and really productive because of the way mucus settles in their lungs when they sleep.

Any chest infection causes lung damage, so keeping on top of any symptoms of a chest infection is important. Antibiotics, nebulisers, inhalers are all beneficial in treating chest infections and you may find he needs these treatments more as he gets older.

Hopefully the CPAP will be good for your son and strengthen his lungs so he has less problems.

All the best

Gemma
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Posted By : sabrina1983 - 4/23/2015 9:51 PM
Dear Gemsi.

Thank you for your explanation. Dr also said that CPAP machine can help him to gain weight as he's not gaining weight after his last admission 3 months ago. I hope my baby will do well. ;-)

Posted By : sabrina1983 - 4/23/2015 11:02 PM
another question...my baby boy breath is quit fast.. abot 44/perminutes. Understand normal rate for baby is 32/perminutes. Is it normal for Cf??

Posted By : theHTreturns... - 4/24/2015 5:41 AM
hi. yes early prevention with cpap treatment is very beneficial. i use cpap for very severe obstructive sleep apnea. not sure about the per minutes though. get the mask properly fitted. something i failed to do. baby will have better lung capacity with using the cpap. obviously i am no baby-but getting good flow will promote stronger lung capacity. many healing thoughts.
THE HAPPY TURTLE.

my conditions are mere aspects of me, they do not define me.
'

Posted By : Gemsi - 4/24/2015 4:32 PM
Hi sabrina,

I'm not really sure how cpap can directly help with weight gain. However there is some science to cf that might explain the thinking of the doctor.

When lungs are working really hard they use a lot of energy. To help get oxygen around the body the heart has to beat faster and harder aswell. Many people with cf have an enlarged heart because of this. An infection and mucus clearing also take a huge toll in the body which has to start making extra white blood cells to fight infection. So, while all this is happening there is a lot more energy being used. This can effect the amount of fat that is stored as it is being used straight away by the body. My thinking is cpap while helping the lungs and giving them a bit more of a break at night this might mean your sons body has to use less energy to breathe. This could indirectly effect weight gain I suppose.

That's just guess work, I may be wrong.

As for the breathing faster, this could be like the heart thing, the lungs are working harder to make sure it's getting as much oxygen as it can for your sons developing and growing body. Hopefully this will settle down when your sons body doesn't have to work so hard at night. Make sure you're writing down all your concerns and bringing them up with the doctor. It makes it a bit easier when you see the doctor if you have a list and don't have to remember everything.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Posted By : sabrina1983 - 4/26/2015 1:48 AM
Dear all.

Thank you for all the explanation. I hope all the process will go well and so mybaby. :-)

Posted By : theHTreturns... - 4/26/2015 3:36 AM
many healing thoughts.
THE HAPPY TURTLE.

my conditions are mere aspects of me, they do not define me.
'

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