new mom son just diagnosed ..devastated... please help

Hello I am a new mother my son has just been diagnosed with cf as of yesterday. (He is 4 months old) I'm am devastated, I haven't stopped crying for two days. I am terrified. Is there anyone out there who can offer any comfort or reassurance as to what his life will be like? How effective the treatments are?
Will his childhood be greatly Affected? Can he really live well in to adulthood these days? Are there any adults who are still healthy living with cf? Any parents who can relate or tell me what it's like caring for a child with cf?

Hi there!

I can't offer much, but I'm going to try my best, to help you.

CF isn't the end of the world, the end of the line for your child or anything like that. People with CF are living a lot lot LOT longer now than they used too, and with treatments improving all the time, it is guessed that today's generation of children with CF will be in there 60's. The life expectancy average has just been increased too 35, which may seem like a small step, but that's an extra 4 years. I have friends already in there 40's and still going strong without transplant. I know of one person in there 60's, without transplant. When I was born my life expectancy was 5, then 12. I've beaten both of them, and am now 21 and still going extremely strong!

The main plan for now, is diagnose childen straight away, start treatment straight away, and try to keep away infections until 15-16. That way children will go through school, as normal as other kids. Treatment will still be a lot, physio, nebs and medication and weigth gain shakes, but less IV antibiotics and nebulised antibiotics.

I personally have the problem of having muscle problems too deal with as well, meaning I can't do any real excercise, except core stability and chest physio. One thing is for certain though it's usually the most active children who go longer without an infection. Make sure your child is as active as possible. I also highly recommend trumpet/cornet or any big wind instrument like that. I reckon my lung function is still higher than even my nurse's, because of playing trumpet growing up. Back then my lung function was 120%, 20% more than what is considered average for age height gender and weight.

I know you will want to guard your child, and that's good and everything. At the same time your child growing up, will need normality. Never hold your child back unless it's going to be detrimental on his health.

That's all the advice I have for now, keep posting with your questions, and I will do my best to answer them!

Take care
Gem

hello, my name is misty and beleive me i know how you feel. my son was diagnosed with cf when he was five months old and i too was devestated and got really depressed. but he is five years old now and just started kindergarten. you have a long way to go but rest assured there is so much hope out there for your son and know that u are not alone in your fears. Kavre, my son was deathly ill at five months he had 2 types of pneumona and several infections at 5 months, he was hospitalized for 22 days, at this time is when we found out that he had cf. over the past five years he has been doing very well. he hasnt even had a bad cold. he alson hasnt been in the hospital since. i know u are thinking the worst right now but there is new treatments everyday and high hopes for a cure so keep your head up and beleive that the lord will take care of our little angels. my email adress is [email protected]  you can email me anytime you need someone to talk to!