Son with cf? one year of age

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scubbamama
New Member


Date Joined May 2006
Total Posts : 5
   Posted 5/17/2006 11:41 AM (GMT -7)   
I will tell me his history and let me know what you think. Thank you for any opinions and information. I am 25 yrs old myself i had one positive cf and two inconclusive tests when i was six years old. Now i have five children all have been healthy basically except for one of my youngest. Austin He is a twin. he is seventeen months old. Born at 35 weeks on ventilator lung collapsed within first two weeks of life. Has had pneumonia every month or every six weeks since age of three months. Has been hospitalized a half dozen times. Most of time dr lets me handle at home because of my history and fact i have four others under five. He has asthma just diagnosed with gerd as well. has atrial septal defect, pulmonary vein defect. Has been on sterouids about every month up too two weeks a month since three months of age. If he has two days of no chest congestion we consider it a miracle. Has missed every family event but first birthday. goes around people abd outdoors and has pneumonia within two days usually. He is like flipping a switch starts often with runny nose day one cough day two can't breath and usually pneumonia ior on way they say by day three. I got to point where he gets a runny nose i call doctor give heads up get him in within 1-2 days and i am usually 99.8% right on diagnosis pneumonia or upper respiratory infection or bronchitis. He soaks anything he wears when he naps plays fevers why bother they drench him he smells salty when he sweats kind of gross. He had a sweat chloride today. Just finally seen lung specialist last week and he said enough is enough no baby should have a chart as thick as his with nothing but lung problems. So he ordered allergen tests, immunoglobin tests, cbc etc, two sheets of labwork let me know thank you for any opinions. there oare other things can't remember everything he is on pulmicort twice a day singulair albuterol in neb since 3 months for problems on couple other meds rough weeks

stephen101
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 5/17/2006 12:32 PM (GMT -7)   
hope he doesnt have cf and when are his results back!! keep us posted
      cf is a part of me but dont define who I am


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 5/18/2006 7:05 AM (GMT -7)   

Hello and welcome.  It sounds like you have a very full plate.

What are the results of the sweat test?

Good luck to your baby and stay strong, may he get the right diagnosis and care he needs.

 

Sandra


scubbamama
New Member


Date Joined May 2006
Total Posts : 5
   Posted 5/18/2006 7:24 AM (GMT -7)   
Haven't got results yet just tested yesterday. Told me the dr wouldn't go over them until today. They said he ordered two tests but in thirty minutes sweated enough for at least four tests.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 5/18/2006 7:25 PM (GMT -7)   
Welcome Scubbamama,

You do have your hands full. Please, keep us posted on the results. We are here for you!.

Hugs!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
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, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

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scubbamama
New Member


Date Joined May 2006
Total Posts : 5
   Posted 5/20/2006 8:55 AM (GMT -7)   
Result was negative don't know what the number was nurse just said negative. Thank heavens but we still have to figure out what is going on. Something isn't right when your child can't breathe without a chest full of junk at least three days a week. Any ideas on what i should make sure they look into

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 5/20/2006 11:16 PM (GMT -7)   
What about the results of the other blood tests, how did they come out?
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
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, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

To support HealingWell.com, follow the link below or click "Donate" on the top menu: 

http://www.healingwell.com/donate/


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 5/21/2006 6:46 AM (GMT -7)   

Hello scubbamama.  Has your son been tested for immune deficencies/disorders?  If it hasn't been done already, I would check into that.  Also like Kathy asked, has he had any blood dna genetic testing done and what are the results?

Good luck and I hope you get some answers soon.

 

Sandra


Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...


scubbamama
New Member


Date Joined May 2006
Total Posts : 5
   Posted 5/22/2006 7:36 AM (GMT -7)   
They tested for imuune deficencies and allergies and cbc don't think genetic testing. Dr told me to get genetic testing to see what problem genes i have he said that would help knowing what to look for. My personal physician refused and told me it was just a suggestion and refused so i am looking for another dr asap to be tested so i know what mutations i have in order to help my son. The nurse was vague on results she said most were within normal limits but that the dr would want to see me to go over blood test results. Which conflicts what he said. Soi has me wondering now. To make it even nicer his twin was in er and has hydroseal and ing. hernia and has to have both sides repaired tomorrow morning. Thanks for suggestins.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 5/23/2006 5:38 AM (GMT -7)   
oh my scubbamama....what an ordeal your going thru. I know that twins are difficult to handle if their health is impaired. We are here for you!.

Many hugs going your way!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
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, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

To support HealingWell.com, follow the link below or click "Donate" on the top menu: 

http://www.healingwell.com/donate/


scubbamama
New Member


Date Joined May 2006
Total Posts : 5
   Posted 5/24/2006 8:50 AM (GMT -7)   
Allergy test results negative allergic to nothing!!! Amazing I know they didn't buy it so they ran it twice. Same results. They said most things were within normal range but his platelets are high and the dr doesn't get bgack from vvacation until tomorrow. The nurse saidf they will have to monitor that but can't fill me in til dr reads reports. He has a bronch on june 6 they are going record it with a camera and take a sample of lung tissue for analyzing. He is really wheezy and congested again. They said he is a yellow flag right now probably a red and will have to be in hospital again if doesn't improve
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