Hello, any other CF Parents on here?

[mom2toby]

Hello parents, and parents to be. I belong to a few other forums and like to connect with as many parents in similar situations that I am in.

My son is almost 13 months old and was diagnosed at 2 weeks old with cystic fibrosis.

Just wondering if anyone else wanted to chat and share experiences, tribulations, etc. with their child(ren) with CF.

And would be great to know about others that also TTC'd while knowing there is a chance of #2 (or 3 or 4... etc) to also have CF.

 

[Pyrrhic]

Hey hun, my daughter doesn't have CF but is a carrier and we went through all the testing. So sorry to hear your son has it My OH and I are going for genetic testing next year to see if we're both carriers.

 

[xLisax]

My son has CF and was also diagnosed at 2 weeks of age, he had meconium ileus and had surgery at 2 days old!

Would love to share experiences/chat with you..thought i was alone here

And my name is also Lisa!

xx xx

 

[mom2toby]

My son has CF and was also diagnosed at 2 weeks of age, he had meconium ileus and had surgery at 2 days old!

Would love to share experiences/chat with you..thought i was alone here

And my name is also Lisa!

xx xx

HOLY MOLY!! my son was born with a meconium ileus also and also had surgery at 2 days old! hahaha how ironic!

my son does really well with everything. he does 2-3 nebulizer treatments per day and has to take enzymes before every meal/snack along with zantac and vitamins. we were supposed to get a feeding tube for him last week, but we're taking a trip next week and i didnt want to be dealing with the newness of the tube + the potential for any problems from surgery.

one thing i realized, is you're never alone with this. people that surround CF are so willing to answer questions and always so nice!

 

[mom2toby]

oh, one other thing, Lisa... where do you live? I noticed a lot of people for the UK here and im rather new to this forum. and i also see you WTT until 2012- what are your thoughts on that, knowing the chances for CF again?

some people think i am crazy and selfish for TTC, but i always remind those people that there is always a chance of SOMETHING being "wrong" with your child, so ill take my chances knowing how to deal with CF already.

 

[xLisax]

I have an extremley positive outlook on CF (i think you need to hey?), Max is doing so well..he was 22lb at 7months and has had 1 cold so far which was treated with Augmentin at home *touch wood for this to continue*..he has vitamins once a day and floxapen twice a day..he used to hate these but now sucks them outta the syringe!! He has creon before meals and physio once a day!

I think its spooky how similar our situations sound!! I live in Cornwall, whereabouts are you!?

And yes we are TTC in 2012, I dont want CF to stop us having our family plans..obviously it would be a cautious/nervewracking experience but i would definitly want the test in pregnancy to determine if CF would be a factor for our unborn baba!

Sorry to be nosey but when you say feed tube, what do you mean, im sorry to probe, just wanted to understand fully what you meant

xxxx

 

[mom2toby]

I have an extremley positive outlook on CF (i think you need to hey?), Max is doing so well..he was 22lb at 7months and has had 1 cold so far which was treated with Augmentin at home *touch wood for this to continue*..he has vitamins once a day and floxapen twice a day..he used to hate these but now sucks them outta the syringe!! He has creon before meals and physio once a day!

I think its spooky how similar our situations sound!! I live in Cornwall, whereabouts are you!?

And yes we are TTC in 2012, I dont want CF to stop us having our family plans..obviously it would be a cautious/nervewracking experience but i would definitly want the test in pregnancy to determine if CF would be a factor for our unborn baba!

Sorry to be nosey but when you say feed tube, what do you mean, im sorry to probe, just wanted to understand fully what you meant

xxxx

the feeding tube (also known as a g-tube) is basically inserted into someones stomach and they get liquid food/calories input into their bodies through it.

one thing that i always thought about the CF thing with another baby- i dont think i would want to take the risk on my pregnancy to get the test on the baby to find out, because it is quite risky and it wont change the fact of the baby having cf or not. we have newborn screenings here so we find out within 2 weeks of birth anyway.

I live in Florida, not sure how familiar you are with the geography of the US- but where i live is in West Palm beach- its the red dot on the coast.

https://transcripts.cnn.com/2000/ALLPOLITICS/stories/11/27/palm.beach/florida.west.palm.beach.jpg

 

[xLisax]

Im not sure what tests they do here, but I wasnt aware there was a risk to pregnancy! May have to rethink that then!

How are things for you? I found I have a few 'hard' days where it all hits me. But i try to keep positive for Max

xxx

 

[mom2toby]

we definitely learned that keeping positive is the best way to go.

the test they would have to do during pregnancy is an amniocentesis. i know a lot of people dont know about it unless they research,l so i found this on wikipedia:

Risks:
Although the procedure is routine, possible complications include infection of the amniotic sac from the needle, and failure of the puncture to heal properly, which can result in leakage or infection. Serious complications can result in miscarriage. Other possible complications include preterm labor and delivery, respiratory distress, postural deformities, fetal trauma and alloimmunisation (rhesus disease). Studies from the 1970s originally estimated the risk of amniocentesis-related miscarriage at around 1 in 200 (0.5%).[2] A more recent study (2006) has indicated this may actually be much lower, perhaps as low as 1 in 1,600 (0.06%).[2] In contrast, the risk of miscarriage from chorionic villus sampling (CVS) is believed to be approximately 1 in 100, although CVS may be done up to four weeks earlier, and may be preferable if the possibility of genetic defects is thought to be higher [3].


recent pics of my boy if ya wanna take a peek!
https://s448.photobucket.com/albums/qq208/mom2toby/toby may/

 

[xLisax]

Hmm doesnt sound like a nice procedure. My mum had to have one on my youngest sister (not CF related).

Your LO is so sweet, he looks very cheeky Ill pop some photos of Max on later

Love the name Toby as well btw..thats our name we've chosen if our second is a boy!

Are you led by a certain CF team over there then? We have a local team who look after us..we see them once a month!

xxx

 

[xLisax]

Found the link,theres only four xx

Mister Max~

https://s707.photobucket.com/albums/ww75/Maxs_Mummy/Our Little Man x/