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Doc Recommends CF Test for Child

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Posted 3/17/2007 1:22 AM (GMT 0)
Hello,

I have particiated in the Asthma forum several times and now find myself in the CF forum.  My son, 7 yrs old, has been diagnosed with Asthma since very young and has a strong history of Pneumonia, 6 bouts diagnosed by the pediatrician, hospitalized twice.  He has terrible asthma issues during the winter months and will typically take 3 rounds or so of Prednisone during those months.  

I took him for a recheck with his Asthma specialist last month and he said Jake is doing great, now on Pulmicort Turbuhaler and his lungs were clear.  Because of a nagging feeling (instinct?), I asked him again if my son's history of Pneumonia could have caused any lung damage.  He always has a nagging cough and his peak flows have dropped in the last year.  The specialist said that Jake sounded great, pumonary function test results looked fine and not to worry.  This just didn't feel right so I took him to a new Asthma specialist yesterday for a 2nd opinion.

The new doc performed a pulm. function test and also said that his lungs seemed to be doing fine and sounded clear.  He was, however, concerned about my son's Pneumonia and Asthma flare history.  He also said that his sinuses were inflamed and swolen and may contain polyps.  He ordered a CT Scan for his sinuses and a sweat test, which will be performed next week.

My son has not had problems gaining weight, as a matter of fact he has put on extra pounds because of the steroids so often.  I guess his biggest possible symptoms are in his history.  He also seems to be tired ALOT and has a huge appetite for a 7 year old!  I guess I'm just not sure if I should really be worried about this.  It seems so far fetched but, at the same time, makes a lot of sense when I think back about his medical history.  For instance, he would get Pneumonia with 48 hours of an Asthma flare starting.  The doc thinks that maybe the lung infection was there and it caused the Asthma symptoms (the opposite of what we originally thought).  Could this really be CF?

Sorry to be so long-winded, but any insight/advice would be greatly appreciated!

 

Posted 3/17/2007 1:30 AM (GMT 0)

Hello momwith3 and welcome to Healing Well!

In ordering the sweat test and ct scan, it sounds as if your doctor is on the right track to finding a diagnosis/cause for your son's illnesses.  There are other tests too.  Fecal fat elastase test, chest xrays/ct scans, gene testing, throat cultures, etc...

Hopefully you will have more answers soon when the results from the sweat test and sinus scans come back and or if you know if more testing needs to be done.

Good luck and hope your son is feeling better.

Posted 3/17/2007 1:36 AM (GMT 0)
Thank you so much for your reply!  I will anxiously be awaiting the test!

Posted 3/17/2007 4:52 AM (GMT 0)
I have experienced a very similar situation with my 18 month old daughter. She has been treated for pneumonia 3 times this winter and has had 40 days of steroids in the past 10 months. She has had a swallow study done, allergy tests, x-rays (face and chest), a chest CT and today she had the sweat test done because the lung Dr wanted to rule out CF. The sweat test was ordered because of her recurring lung infections. She is growing well and doesn't seem to have any digestive problems. I am so relieved to find out her sweat test came back negative for CF. Her score was 10 so she was actually on the low side of normal. I know how scary it is waiting to find out. I was a nervous wreck as I waited to hear what the nurse was going to say. I wish you good luck! I hope for your sake that the tests will be done sooner than later so you know for sure what is going on.

mom2jjk

Posted 3/17/2007 2:06 PM (GMT 0)

Dear mom2jjk,

Thanks very much for sharing your personal experience.  I'm so glad to hear that your child tested negative - it is horrible having to wait for results like that.  My gut feeling is that my son will also test negative, although I'm prepared for any result.  Did they find out why she has the repeated lung infections?  How did her other test turn out?

Thanks,
Jan

Posted 3/17/2007 4:01 PM (GMT 0)
The Dr's have decided that she has severe asthma. The face x-ray last spring showed a massive sinus infection and when that cleared up she improved a lot until winter this year. The swallow study came back negative meaning she does not have reflux. She did not test positive for any allergies. The chest CT was ordered to make sure there wasn't a lung defect and that came back clear. The CT did show some of the little air sacs in her lungs were collapsed which just solidifies the diagnosis of asthma.  She also had a bronchioscopy because in Jan they were concerned she had aspirated a peanut but that too just showed that she was having a bad asthma attack. She was hospitalized then because even with steroids and albuterol, they couldn't get her wheezing under control. After an hour long albuterol treatment she still had wheezing. The lung Dr and asthma Dr both agree that it is asthma and hopefully as she grows it will improve.  I think she has had just about every test possible for her age so now I can focus on keeping her healthy and off steroids. Our biggest problem is illness seems to be her only trigger so that makes it hard to avoid when she has 2 older siblings and we don't live in a plastic bubble! My guess is that because her asthma is brought on by illness, that makes it easier for her to get a secondary infection like pneumonia because her breathing is already compromised. Once again good luck and please let me know how everything turns out.

mom2jjk

Posted 3/17/2007 7:42 PM (GMT 0)
Wow, she's been though a lot! I understand about the plastic bubble thing, we have 4 kids. If you ever have any questions about Asthma, feel free to ask me. My oldest son is 14 and had asthma all his life. My 3 year old also has it. Did they recommend that you take any carpet out of her room and replace it with hardwoods? I know that's a big thing, even though she may not have allergies. I also bought the matress casing and allergy pillows for my son, but it doesn't seem to help much. Really, since starting on the Pulmicort Turbuhaler last December, he has done remarkably well as far as his wheezing...like 99.9% better. But he still has this chronic cough and the sinus issues. I don't know what to think. I used to feel like I had this under control, but now I feel like I'm starting at ground zero. At this point, we are also just trying to stay off the steroids. I wish you luck with everything and will post when we get his results. Thanks much.
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