Cystic Fibrosis??? Stressing!!

[Jinx]

I am completely stressing out!! Took my bub to the doctor yesterday and after she checked him out, she referred me to get a test done for Cystic Fibrosis!! Although she said that it is unlikely that he has it because it should have been picked up in the heel prick test they do as a newborn - she still wants him to be tested just incase!! The test will be done on Monday and I am not sure how long I will have to wait for the results but I am really stressing out! I have done a little bit of research on the net and it just made me even more stressed!! How do I stop myself from thinking the worst?? :(

[timetoplay!]

:) I also had to get my daughter checked just recently. She's 2 & 1/2. They do a sweat test and have to sit still for about 20 minutes, so make sure there's plenty to occupy him with! Our test came back fine, but she does have a narrowed airway and asthma. I hope it all goes well for you:fingerscrossed:

[Jinx]

:) I also had to get my daughter checked just recently. She's 2 & 1/2. They do a sweat test and have to sit still for about 20 minutes, so make sure there's plenty to occupy him with! Our test came back fine, but she does have a narrowed airway and asthma. I hope it all goes well for you:fingerscrossed:

Thanks timetoplay. Can I ask what symptoms your daughter had to make the doctor think that CF was a possibility??

[M O P]

Try not to stress too much. I'd say the Dr is just being thorough. You'd have known by now I'd have thought if it was CF.
2 of my cousins have CF and they were detected very early, they were certainly very sick as babies so it was pretty obvious.
Having said that no one had any idea it was in our family, being a recessive genetic disease, until the first of my cousins was born.

[timetoplay!]

It was mainly because she has had a wet cough since she was born. She came out coughing! She's very tiny (still wears 00 - 0) and often lacked energy too (from all the coughing). She constantly gets chest infections but I think that's because the narrowed airway doesn't allow her to cough stuff up easily. And she sweats a lot. She didn't want to eat and was usually constipated. What's happening with your son?

[Jinx]

It was mainly because she has had a wet cough since she was born. She came out coughing! She's very tiny (still wears 00 - 0) and often lacked energy too (from all the coughing). She constantly gets chest infections but I think that's because the narrowed airway doesn't allow her to cough stuff up easily. And she sweats a lot. She didn't want to eat and was usually constipated. What's happening with your son?

He has pretty much been coughing since day 1 too and ALWAYS sounds like he has phlem stuck in his throat. It seems like he always has a cold. He poos A LOT - about 5 times a day! He also sweats HEAPS. He has a good appetite though and is certainly not small - quite a chubba really! (the doctor said that this is a REALLY positive sign).

I know that the chances are really slim and he has a lot of positive signs saying that it isn't CF but the fact that the doctor even thinks that it is a possibility .................:(

[Jinx]

Try not to stress too much. I'd say the Dr is just being thorough. You'd have known by now I'd have thought if it was CF.

Thanks Kazza - I hope you are right! :fingerscrossed:

[veve]

hey Jinx...

I just wanted to send :hugs: :hugs: - you must be stressed... :(

I do hope the Dr is just being thorough... your DS is definately in the chubby catagory :) so I hope that makes a difference!!

please keep us updated

xx
Jen

[Jinx]

hey Jinx...

I just wanted to send :hugs: :hugs: - you must be stressed... :(

I do hope the Dr is just being thorough... your DS is definately in the chubby catagory :) so I hope that makes a difference!!

please keep us updated

xx
Jen

Thanks Veve. Hopefully all this worry will be for nothing!! I will keep you posted.

[meiko]

Hi Jinx,

My DS was tested last month with the sweat test as it was picked up in the heel pick test at birth. We found out that he is a carrier so hubby and I have to get tested.

The pathology lady said that it only takes a few hours for them to get the results of the sweat test, glad that it was not days.

We where there for about an hour the worst bit is a machine that they put on their leg to make the sweat glands active this takes 20mins. It is like a tens machine and gives them a pins and needles feeling. To be honest this did upset DS but he was only 5 weeks old, but he did cry more with his needles at 2months and giving him a bottle did calm him down though. After the 20mins they then put blotting papper on their leg covered with plastic, then a heat pack to collect the sweat.

Good luck on Monday

[five]

My youngest was tested twice for CF at age 3, the second test had me really stressed, because all they would say was the first test was 'inconclusive' :confused:
He had always had a wet cough, and was quite skinny, passed a LOT of mucus with his stools all the time etc etc, but thankfully the 2nd test was negative :D
All the best for Monday, keeping :fingerscrossed: for a big negative :D

[Jinx]

Thanks for your replies and your support - I will keep you all posted...........

[jessgray]

good luck :)

[Jinx]

aaaaarrrrggggghhh!!

Just rang to get my sons results and they told me that they wont have them for another 2 weeks!!!!

2 weeks!! Seems like forever away! How am I going to wait that long........:(

[meiko]

Has it been 2 weeks yet????

Just wondering how you went.

[Jinx]

Well, called the doctor on Monday for the results and was told that I needed to come in urgently to discuss them.......stressing.......made the appointment for Tuesday morning. The doctor told me that his results have come back as "borderline" for cystic fybrosis.......really stressing!! :crying: We were sent straight up the hospital to get the test redone - we now have an appointment at the CF clinic on Thursday at 3pm for the results......really, really, really stressing!! :crying: :crying:

We are really trying to keep positive but it is hard. Anyway, will keep you posted with the results..........:fingerscrossed:

[Elfin]

Jinx I am so sorry you are going through this nightmare, nothing is certain yet just try to keep as positive as possible. Everything crossed that the results are wrong. Best wishes to you and your family:hugs:

[sarah81]

Jinx I hope everything went well at your appointment today and you got the all clear. :fingerscrossed: for your family.

[Jinx]

Test results came back negative!!!!!:smiliedance: :smiliedance:

Soooooooo happy!! What a relief!! :smiliedance:

Still not sure what we are dealing with but it is definately not CF.

Thank you everyone for your support......

[Elfin]

Jinx that is just super fantastic. You must be so relieved:smiliedance:

[veve]

:smiliedance: YAY!!!!! :yelclap:

that is wonderful Jinx... I was waiting for an update!!! that must be such a relief! :hugs:

[lukaelmo]

Wow Jinx, I just read this thread so I did not have to wait for your good news... so happy for you and your lovely DS...

[Jamily]

Hi Jinx

Just noticed your thread....really happy that you've had the all clear for CF :smiliedance: - wow, you must have had a horrible time waiting for the results....great news that all is ok :)

[Jinx]

Thank-you so much everyone!! We are very happy and very relieved!! It was a horrible wait but worth it for such a good result!!