Mom in need of advice!

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New Member

Date Joined Mar 2007
Total Posts : 2
   Posted 3/26/2007 8:25 PM (GMT -6)   
My son is currently 22 months old. He was born with ASD and VSD, an ear tag and a hyperplastic L thumb. He had recurrent lung infections accompanied by hospitalizations. He was tested for cystic fibrosis and ciliac disease via a blood sample and we were told the tests were negative. There has been no sweat test performed as of yet. In October following a CT scan, he was diagnosed by a well-respected hospital with a birth defect which caused the bottom lobe of his right lung to be cystic. In November, he had the bottom portion of his lung removed. This portion was almost double the size of what it shuld have been. After that, he recovered well and began to grow again. However, in mid-February, he came down with another respiratory infection which has since landed him in the hospital. His appetite is once again poor and I am at my wits end! My guts tell me there is more to this than they have found. My doctor has been very dilligent; however, my personal strength is wearing incredibly thin. I'm scared that they are missing something that could otherwise be prevented and/or treated. If anyone has anything they can share to help guide me in my decisions with my son's situation, it would be greatly appreciated. I am unsure what my next step should be. Thanks to all who respond.

Regular Member

Date Joined Aug 2006
Total Posts : 74
   Posted 3/27/2007 2:24 AM (GMT -6)   
Wow. Well, I'm not a mom or anything, but the first thing I would do is try to get a sweat test ASAP. From what I've heard, they are very accurate; that's how I was diagnosed at 2. I think right now that that would be the best thing to do.
Good luck!
We are the ones, we get knocked down; we get back up and stand above the crowd. We are one.



New Member

Date Joined Apr 2007
Total Posts : 9
   Posted 4/22/2007 10:58 PM (GMT -6)   
Well sweat test are not a good way to tell if your kid has C.F. Because they have been wroug alot you need to get a blood test for the gene that is always right but you must test for all the diffrent kinds of genes in C.F. there are over 150 diffrent kinds.
It cost alot but that could help you to get to the bottom of it. My daughter has C.F. and has the most common gene f-508 that the one that effect every thing but the brain. there are ones that only mess up the liver and  or just the lungs or the bowels. So good luck and my daughter was in the hospitl almost for the first 2 years of her life. I can you it will not last forever it will get better lean on God alot to get thur this . God did not give your kid this thing there is a devil out there and he can mess thing up but you must not let him win. I will pray for you. my daughter is nom 14 years old.

Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted 4/23/2007 5:20 AM (GMT -6)   
The trouble with the gene testing, is they can only test for something like 20 of the 150+ gene's they know exist.
A sweat test, tests the salt levels, if it's inbetween certain parameters then CF is usually diagnosed. If itis in the Cf parameters then they know it will be one of the other gene's they can't test for. They can also test for the gene by doing a cheek swab.

Hope you get some answers soon. I know from experiance that what's worse than knowing there's something wrong, is not knowing what's wrong.

Sending my love and best wishes and hope things work out better than they seem.
It's true!: Smile and the whole world smiles with you. Frown and the world turns upside down.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Allergies: Any dressing except Mepilex border. Even plasters make my skin blister. Hayfever, Tazocin, Tobromycin, Ibruprofen, Asprin, Codeine, Mirtazapine.
I have a pretty little port-a-cath on left side of chest wall

New Member

Date Joined Mar 2007
Total Posts : 2
   Posted 4/23/2007 10:28 AM (GMT -6)   
Thanks to those who responded. You gave me some insite that I hadn't found on my own.
Though they did do some gentic testing a the hospital I mentioned, I don't think they tested specifically for CF. They were looking for  a diagnosis for the all of the birth defects.
My doctor tells me that my son must be older to do a sweat test for reliable results. So, we are still waiting. He goes for a re-check in June to the hospital in IA City. Maybe we'll get a few answers there.
Thanks again!

Regular Member

Date Joined Apr 2006
Total Posts : 105
   Posted 4/24/2007 6:10 PM (GMT -6)   

Hello concernedforhim and welcome to Healing Well!

I would definately request that the sweat test be given to your son.  Make sure it is done at an accredited center.  At 22 months, I would think that your son is old enough to have a sweat test.  There are other tests that your doctor can order so that all the pieces can be put together for the "puzzle" on a diagnosis.  Some that I can think of are throat cultures to see if he is culturing any cf bugs, fecal fat test to see if he is pancreatic sufficiant, sinus ct's to see if he has polyps, full panel/gene dna testing.  There is even a nasal potential difference test (not recommended for young children).

I hope you get some answers soon as I know how difficult the waiting and wondering can be.





"Measure your life by loss not gain, not by the wine drunk but by the wine poured, for love's strength stands in love's sacrifice and he who suffers most has much to give" -Goforth
Cystic Fibrosis Co-Mod

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