Diagnosis and severity questions

A

anonymous

New member
My son is seven years old and has had mild asthma, and allergies his whole life. Over the last 18 months he has been fighting reoccuring bout of pnemonia in the same location of his left lung, which has also created an extremely high fever resulting in a feveral seizure (another issue).
The doctors have suggested that we test, with a pulmonologist, for Cystic Fibrosis.
Since then I have been researching, and have many concerns that my son might may be a candidate for this disease. However I do not believe he has daily mucous/fluid issues, which need to be tended to or cleared.
My questions:
Are there different levels of severity with Cystic?
Does Cystic get worse as the affected ages?

Please help with any supportive answers.

Thank you, Ryan
 
L

lflatford

New member
Yes. Some people have mild some have worse cases. You can also have digestive issues and not respiratory or the other way around. Some people have both. Severity can also change over the years. Hope this helps.
 
J

JazzysMom

New member
Please remember that all the info you read is for the "average" CF patient. Everyone is different in how their CF is in severity, response to meds etc. I suggest you have the test done if nothing else to rule it out. If it turns out that it is not CF then you can move onto the next possibility. Sometimes (depending on the patient & health care provider) CF symptoms can be confused with Asmtha, allergies & other problems.
 
R

rose4cale

New member
You would never know my son has CF due to mucus and fluids. Just his size and digestive issues. All patients are different. I urge you to do the genetic testing for CF for you son at an accredited CF center. I do not have faith in the sweat test as they never did get an accurate answer with my son after numerous attempts. He was also at a regular hospital for some testing and that was a complete waste of time and money. As Melissa said, if anything, at least you could rule it out.
 
J

JennifersHope

New member
Hi,

I won't stay on a soap box for to long but I will say that so many doctors are not trained in CF at all, unless you have the most specific case of CF more often then not, they are going to miss it. I am sad proof of that. I didn't have the bowel blockage at birth, but I did have lots of pneumonias and Bronchitis flare ups as a kid into my teens.. come to think of it I still do... yeash . I can tell you that I have had pneumonia often as a kid and even more often as an adult.

I didn't have a regular dr as a child because both my parents worked so I went to those IMCC places, you know walk in and see what ever dr was on call. So I was not dx till I was 29. I was told it was allergies and atypical asthma my whole life, once I had a plural effusion but for the most part I just kept getting pneumonia.

If you suspect CF, I would be persistant as ever until they are sure it is completly ruled out. I would like the others said go to an accredited CF center to have the sweat test done, and even then some ppl with certain gene types have negative/borderline tests. The genetic test Julie was talking about on the other thread also is a good idea. My insurance won't pay for it right now and that is okay cause I don't want to know what gene type I have anyway.


I will keep you in my prayers that this doesn't turn out to be CF but if it does, don't worry the life expectancy age is going up so fast that by the time your child is an adult he will have a good chance at a realtively normal life.

Jennifer
32 w/ CF and Addison's (who should be in bed instead of reading and writing posts <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
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