I'm a newbie with a 13yr old

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New Member

Date Joined Oct 2007
Total Posts : 2
   Posted 10/25/2007 11:09 PM (GMT -7)   
Hi, my name is Toni, the mother of a onry 13 yr old boy.  In the last 2 years he's had several frequent episodes of what the doctors were saying was croup.  He gets a god awful sounding cough and sounds just like croup, which he had a few times as a baby.  He has recurring sinus and ear infections (6 sets of tubes) since birth.  We changed pediatricians late last year and he did some test on him to find that he has a primary immunodeficiency disorder, he has Selective IgA deficiency, meaning the part of the blood that fights infection off from the mucus membranes and gastrointestinal tract is pretty much not there (normal levels are something like 90-120 and he is a 1) so we were referred to a pulmonologist and then on to an immunologist.  The immunologist is 2 1/2 hours away and recently a new one came to our town who specializes in primary immunodeficiencies.  After reviewing tests on my son that were done in April he found that the sweat test revealed that his level was a 38 (borderline being 40-60) and felt this to be too close for comfort for him.  Yesterday my son had another one done and the dr himself called to tell me that it came back positive for cf and his level was now 76 putting him over borderline.  He has sent blood work off for genetic testing and will schedule another sweat test to be done in 2 weeks.  He said he has to have 2 positives to make a diagnosis.    He was also diagnosed with asthma.  He takes QVAR inhaler 2 times a day and 875mg Augmentin every night before bed and carries a Proventil inhaler on him at all times at school.
There's alot going on here and I don't know what comes next, waiting is the hardest part.  He began asking alot of questions yesterday and I'm not sure how to explain it to him, I told him that WE (myself, his father, and him) need to write down all of our questions so that when we go back to see the immunologist he can help us get answers.  The hardest part was his last question "mom does this cause death?"   I'm very scared, at 13yrs old I'm supposed to be worrying about him getting in trouble at school, trying his 1st cigarette, little girls calling all times of the night, the typical teenager trouble, not an incurable disease. 
I would love feedback on any information this forum can provide about CF and teenagers newly diagnosed.
Thank you so much in advance,

Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted 10/26/2007 5:40 AM (GMT -7)   
Hi Toni, Welcome too Healingwell!

This must be hard for you, and I can understand why. With my CF, I was diagnosed at 2, and have known nothing different, it's easy to deal with when you know it's there and what you are dealing with. My only experiance of being newly diagnosed with soething, is with my muscle problems. 2 years after them spotting a problem they still have no clue what they are dealing with. And it's hard beause everyone's advice for it contradicts the other.

Everyone has to die sometime. CF can cause preature death without proper treatment, but the good news is, life expectancy is gettng better everyday. When I was born, expectancy was 5, when I hit 5 it was 12, when I got to 12, they said 31. Now I'm 21 and doctors tell me, 60. So, I don't worry about it anymore. Advances in treatment and knowledge of the condition has helped me beat expectancies down with a stick. If it weren't for my muscles, I'd still be working, like a lot of my other CF friends.

Hope an answer comes back soon, so you can start making things better, and can get back too feeling normal. (normallity does come back, just with a little added extras.)

Feel free to ask any questions
Co-moderator in the: Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05

New Member

Date Joined Sep 2006
Total Posts : 6
   Posted 11/1/2007 8:16 PM (GMT -7)   
hi toni, my name is penny, and our youngest child who is 6yrs old now also has cf. i know that this is very hard for you. i just wanted to say that what works for us is to take it one day. i know that is easyer said then done ,but if you don't it will make you crazy.are you from houston texas? i know some one named toni that lives there. just wanted to know if you were the same girl. my e-mail is mom12576@yahoo.com 
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