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cleverfool
New Member


Date Joined Feb 2007
Total Posts : 1
   Posted 2/1/2007 10:01 PM (GMT -7)   
      Hey every one!..I am a little nervous here...my son has just turned 3. He is going to have a sweat test late march for CF.  We gave our doctor a sample of his feces and they came back with a fair amount of mucus...thus the test was ordered.  My wife does carries the recessive gene...however, I was tested and came back negative.  My understanding is that both of us have to be carriers of the gene for our son to have it....yet my doctor is telling me...that may not be the case.  I am concerned and confused and seek the right info.  Our son was 3-weeks early when he was born and we had to use nebulizers with him for about 10 months. However, his condition disappeared and has never reappered since then...he is now 3.  When he was born he did have a blockage of the uratual tube.  Just before surgery...the blockage cleared up on it's own...fixed itself.  We never had to do the surgrey.  However, now he has loose or watery stools twice a day for the last 3 or 4 months.  He can't drink any juice, strawberry milk, anything with chol or he has diahreea.  We are starting to worry if he is getting any nutrients....day will go by with out him eating much...despite our best efforts.. Recently, his eating has really picked up...but he has the horrible smelling stools that are reddish, brown in color...but are very wet.  Funny thing is...he is never really sick....since the original beathing issues.  I am reading all this stuff about CF...some of it seems to describe a few sym....mainly the stools...but that is it.  I want to know if a person who has CF mild or severe...has constant infections, beathing issues, coughing...or is it just a once-in-a-while thing...Is it possible to have only an issue with the GI tract...or does it always deal with the lungs?  Could it be CF..or is it something else.  I checked out the salty thing...he doesn't appear to taste very salty.  I am worried.  A dark cloud is hanging over our heads...and the waiting is killing us.

Michaela's G-Ma
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 2/2/2007 7:57 AM (GMT -7)   
First of all, why are they waiting till March to do the sweat test?  This can be done now and the results can be known within 2 hours.  My granddaughter has a mild case of CF compaired to a lot of people.  With treatments she is doing wonderful!  She was diagnosed at the age of 17 months and she will be 2 next month.  If your son is diagnosed with CF, I'm sure he will do just fine.  I thought it was the end of my life when I found out about my granddaughter.  But learning more about CF and seeing how well she is doing, I am not so afraid anymore.  I have hope that someday a cure will be found!!  Keep us posted as to what you find out.  Try to get the sweat test done earlier than March.
 
Karen
Memaw of Michaela w/CF

littlerose
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 2/3/2007 1:35 PM (GMT -7)   

Hi, I know exactly what you're going through, the waiting is killing us too. My daughter is 6 and she's showing alot of the symptoms for cf, her sweat test is on feb 9th and I'm terrified. She has a huge appetite and shes not growing, shes only 36lbs. She has the oil in her stool and the blown out belly, her pancreas stimulation test also came back abnormal. I cant say she really has any respiratory symptoms, commom colds every now and then but nothing serious. 

I hope you can get the sweat test done earlier and I'll pray for your little one as well as mine. Stay strong and keep your faith.

Liz

 


Gab's Mom
New Member


Date Joined Feb 2007
Total Posts : 5
   Posted 2/3/2007 2:54 PM (GMT -7)   
This is such a difficult time for you. We waited for 9 months through multiple sweat tests and blood tests to get a final diagnosis of CF. Just know that you are not alone. It's been almost a year since my daughter was diagnosed and it's so much easier knowing that she has CF then waiting for an answer. Keep talking and try to get that test sooner!
Michelle

Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/15/2007 11:33 AM (GMT -7)   
sweat test?? They did that when I was a baby... now they have blood tests that are conclusive. Also, it isnt possible for your child to have the disease if both you and your wife dont carry the gene... a person with CF receives a gene from both parents. In order to have CF you have to have two CF genes. If your wife carries it there is a 50% chance that she will pass it on... if you dont carry it, you cannot pass it on... even if your wife HAS CF and passes on the gene and you do NOT carry it, the child cannot have CF. Does that make sense? I think your doctor, perhaps, is misinformed. I have had CF for 27 years and its been my experience that the only doctors who have a clue about CF are the specialists, other doctors are clueless. If you really dont carry the gene then your child cannot have CF, rest assured. Well, Im no doctor but those are the facts.

Red1967
New Member


Date Joined Feb 2007
Total Posts : 1
   Posted 2/15/2007 11:54 AM (GMT -7)   
Hi Everyone,
My soon to be 4yr. old grandson just had a sweat test done to check for CF and his results were confusing. On a scale from 1-50 he registered a 53. Does anyone happen to know what this might mean??? He goes to Indianapolis on Monday afternoon to see a specialist at Rileys. This is very scary!!The reason my daughter took him to have this test is because he has bouts with diarrhea weeks at a time.Please let me know if you can tell me anything about this high ##.
I know there is power in Prayer,so please pray for my grandson,Breylin and I will do the same for you and your loved ones.
God Bless,
Beth
 

Thou wilt keep him in perfect peace whose mind is stayed on Him: because he trusteth in Thee. Trust ye in the Lord forever: for in the Lord JEHOVAH is everlasting strength. ISH 26:3-4


Post Edited (Red1967) : 2/15/2007 12:05:17 PM (GMT-7)

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