Two small children with CF

 I have two young boys with CF.  I have a two year old and a three month old.  The older one didn't really have too many problems except pyloric stenosis.  The youngest one has had it rough.  He was failure to thrive.  He had a g-tube put in when he was two months old and has had pnemonia twice already.  I feel like the world is caving in and I feel like I did this to them.  It is so hard seeing them like this.  The youngest has been through so much and i don't know how much more he can take.  Please someone give me some encouragement.  Does anyone have young children with it or did they have young children with it?  How did you cope?

Hi there, welcome too healing well.

I am Gemma age 22. I am not a parent, though do have CF myself. All I can say is, it does start too feel normal, and it does get easier.

Please, try not too blame yourself, you didn't purposely inject your children with the CF gene, you had no way of knowing that this was going too happen.

I was also faliure to thrive, speaking too my mum, she has told me how things were when I was born. For two year's I didn't grow/put on weight, had a thousand problems with prolapsed bowels and a lot of chest infections. She kept gettingsent away from doctors, saying things were all in her head. Eventually just after my 2nd birthday, they did a test for CF and prooved positive.

about a year after starting to get proper treatment, I started too get better.

All I can give is my view on how things have gone for me. I also have clinical depression and have suffered badely with it for years, much more thna cf has ever effected me. However, even though the CF can be rubbish, something must be good enough in my life, to stop me killing myself. Soem parts of my life are still normal enough, for me too function normally. even when things are at there worst.

CF brings with it fighter's spirit, it's built into chromosome 7, and is the twin of CFTR. I can't speak for myself, as I don't see myself as brave or anything I just think I'm a scardey cat in all honesty. But every single one of my CF friends have the spirit to go on fighting and get over things. Your sons will have this too.

This is said a lot, and to be honest, for me this statement is getting boring really, but still it's true.

Research has come a long long way, and there is still so much more too be found. In 20 years the average life expectancy has jumped from 2 to 5 to 12 to 21 to 31 to 40.

Life with cf maybe tough at times, but it makes the small good things really exciting. The really exciting things to the point of exploding i think.

I hope there are some mother's along soon. I can speak of a view of CF, and how I feel about my nephew who doesn't have CF. I know fo me, even knowing everything about life with CF, nothing would settle me if I found out he had it.

I hope some of this has touched on what you needed to hear.

Keep well, and stay strong. Your sons will thank you later on in life, if you can teach them strength now.

 

Hi, 

How did you get a confirmed diagnosis?  Was it just through a sweat test or blood?  I have a nephew that failed his sweat test last week it was 49 then 61 on the second time.  My pediatrician wanted me to get my boys tested.  I have a 7 week old, 5 year old and 3 year old.  My  week old had a newborn screening and he was normal.  My 3 and 5 year old had the sweat test today and they both tested borderline with 44 and 47 being the scores.  All three my nephew and my boys are healthy.  I just don't understand.  Please tell me what kind of test was used for your diagnosis. 

Statistic Fibrosis eh? Sounds like fun, and quite accurate. After all CF is built up on a hell of a lot of statistics. Ie-you should be this lung function, you have too be overweight too survive, you probably have this part of CF as 40% of Cystics do (I get this with the amount of sugar I eat and the fact that CF related diabetes is quite common.)

Over here it's called 65 Roses, after a little kid once called it that. Pretty name, I think it sounds much prettier than Cystic Fibrosis. I'm actually on a mission too get 65 roses tattooed on me. So far I'm upto 5. I'm thinking maybe just getting the number 65 tattoed now.

I also hate cannulas. My port-a-cath is my life saver, hurts only a little bit, and really is just a sharp scratch like doctors promise. Cannulas used to fail on me every 4 hours, and used to make some docs feel very guilty as I was a screamer. My mum was hardley ever around, wouldn't come in with injections of any sort, but thankfully we had very good cf nurses too entertain us. The effcts-like scars and failings, and a showing lump if you're particularly skinny-defnately outweigh the effects of cannulas.

Wow, that's bad!!!!!!!! How can you get removing a longline wrong?!? It's the easiest thing on Earth (I used to remove my own, when having home IV's, due too line failing so often!)  I'm not suprised you want too move hospitals. Complaints systems suck at all hospitals I've been to though. It's almost not even worse making the complaint for all the hassle you have too go through with it. Keep at it if you can though-more compalints made about certain things, more likely they are to change things.

You're right-getting the number 65 tattoed would be loads cheaper. Probably pain free too......I never think of things simply though