New: found out tonight that my son might have CF

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eyesoffire30
Regular Member


Date Joined Aug 2005
Total Posts : 296
   Posted 1/24/2006 11:30 PM (GMT -7)   
My name is Jody and I have a set of 2 yr old b/g twins....my second set....My son has been sick since birth with what drs have said is RSV.....He was hospitalized last thursday because his chest was retracting and his pulse ox was 81.....So he came home on Saturday and I had him back to the dr tonight because his chest is so s unk in he is scaring me.....you can see his sternum and all ribs, his skin gets sucked in with every breath and you can see it in his neck too.
I spoke with my aunt this past week and she said to me that CF runs in my dads s ide of the family so that was enought to get him to the dr.....my dr is going to call a pediactric pulminary dr in the morning and get him in asap.
I am scared and lost.....what can i expect in the immediate future that my son will have to go thru and what is the one thing that i need to watch for that means my son needs a dr asap.
 They say laughter is the best medicine....then why are my pants wet, my gut sore and I am still laughing!!!


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/25/2006 4:46 AM (GMT -7)   
Hi Jody and welcome to HW!

I am Kathy, I have a set of twins that have CF. Both of which went thru the same thing as your son from birth till diagnosed. I will list some of the symptoms at the end of this post.

I know you said your son was 2, but, the info I am going to explain to you starts from a baby. Usually, mostly only babies have RSV but can linger on for a very long time.

First of all, there are many things to consider when having RSV for "any" baby. Not all babies have CF just because they have RSV or even pneumonia. It's a very hard thing to overcome but can be done with proper treatment. A pulmonologist will get your son back on track "quickly" I can assure you of that. It takes alot of determination on your part to overcome this hump so stick with the plan that the doctor sets out for you. Please don't feel scared if the doctors want to do aggressive treatment, it HAS to be done!. It's possible they might have to hospitalize your son to get the oxygen level back to normal, perhaps expect this on their agenda.

Things to consider a baby or child with CF has. Greasy stools, looks like grease (orange or frothy color). Distended belly and very hard, often screaming and turning blue after eating. Failure to thrive, no weight gain. Hard to burp and have to work and work to get a burp. Very salty/irony taste on the skin. A starvation appearance. Go to the site CF organization for more information, there is a lot of great info out there. I cannot post the link here due to forum rules.

If these things are occurring, I perhaps can help you thru some hard times while your waiting to see a pulmonologist.

Be patient mom, things are gonna get better soon with the help of the pulmonologist. It will be a long hard road to overcome RSV, but, it can be done. It took me 2 yrs for my babies to stop wheezing and get over that hump. Please, don't expect overnight changes.

As far as testing for CF. There is a test called a sweat chloride test. It does not hurt to have it done. It's a little aggrivating for your child. The results are immediate.

Good luck and keep us posted. Try not to worry because things will improve soon.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/25/2006 4:49 AM (GMT -7)   
One more thing! You are blessed! your second set of twins...wow!. It almost happened to me too.

You can personally email me if you like, I will be more than happy to chat with you.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


sarah9000
New Member


Date Joined Jan 2006
Total Posts : 7
   Posted 1/26/2006 3:26 AM (GMT -7)   
hey

i'm 15 and i know how scary this all must be but i'v lived with cf for nearly 14 years now and am doing ok. i'm at school and tacking gcse's so try not to worry to much. The symptoms you are describing do sound like cf. The things that happen to me whenn i'm really ill is that my belly becomes very hard or i turn blue! now thats the ome to look out for if his nails or lips go blue.
There are good chances your son will b suitable for a heart + lung someday as well. so try not to panick.

saz

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/27/2006 5:01 AM (GMT -7)   
Hi Saz,

Just wondering about you turning blue....are you taking the proper amount of digestive enzymes? You can tell if your enzymes needs adjusting due to the looks of your bowel movements.

Also, it's possible that the lung involvement increases digestive problems when going thru a hard time with your lungs. You might need a steroid to help you over your hump. If your belly is hard and needs help, you can use a (over the counter) glycerin suppository to help relieve the gas and make you have a bowel movement. This should help.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

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