Re: New Here, need help sorting this out!!??

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Momtomy7!
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/5/2009 7:58 AM (GMT -7)   
Hi, I am new to all of this and just wanted to ask some questions hoping someone out there can help. My son is 5 years old and has had major problems with allergies and severe asthma since he was born. I took him two weeks ago to the pediatrician with fever and wheezing and they gave him meds and decided to do the sweat chloride test. The results came back and the level was 62. I really don't understand all of it but they referred him to Tulane in New Orleans. The dr yesterday did xrays and said his lungs are very "junky!" We had blood work drawn did the PFT and have, as they said the real sweat test scheduled for this Friday. What is the difference in the one already done and the one they will do? The one already done took about 45 minutes they said theirs takes a little over an hour. He has pnuemonia about 2 times a year and has awful asthma attacks. He had bad constipation as a baby but no to much now. He is small for 5 1/2, 3ft 4in 40 pounds but I never really thought much about that. I just don't know what to think. His dad had a first cousin die at 6 years old from it but as far as I know no one in my family has it. I also have 5 other kids so I guess they will be tested also. What are the chances that the first test was correct? Does he have it or is it really just severe asthma? I hope someone out there can help?!!!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/6/2009 8:31 AM (GMT -7)   
Hi there,

I'm sorry I can't really answer any of you your questions. I've only ever heard about 1 type of sweat test, where the accuracy is about 98%. I never knew there were 2 different types!

Severe asthma can sometimes show symptoms worse than CF, so this is still a possibility for your son.
Most people with CF do not have any known relatives with the condition, as it's still really being understood, about how it can effect people.

I'm sorry I can't give any better answers, and the only way of knowing for sure whether your son has CF is by waiting for all testing to come back. CF can be mistaken for so many different things, and even if you have a few symptoms that could indicate CF, it isn't always the case that that is definately what it is. Your other children will need to be tested too, if it is found your son has CF.

All the best of luck with everything
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


ley2106
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/6/2009 7:50 PM (GMT -7)   
Hi..First of all i would recommend breathing! Its a lot of info in a little amount of time. They maybe wanting to take a second test to have a baseline to refer back to. Take every day one day at a time. For me i take it an hour at a time. I have twin sisters who are cf and they are 10 years old. It can be lived with and your life will not come to a stop. You are your child's best and only advocate. Reserach, educated yourself. Find others like you or even those who have gone before. The path is only scary because it is unknown. Children are fighters and will always need a stong support group. Relax and i would say education is the best way to calm yourself. It worked for me. Best wishes! yeah

Momtomy7!
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/7/2009 9:23 AM (GMT -7)   
Thanks so much!! Tomorrow we will find out for sure. I have read some stuff about it but need to dig a little more. I will post again and let you know what I find out!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/13/2009 10:53 PM (GMT -7)   
Any news yet?
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.

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