Any experience with cystic fibrosis? Asthma?

[floridafam]

I usually don't ask medical questions here but I'm going to drive myself nuts if I don't.


Took my DS to the Pulmonary Specialist today. He has asthma. He had a Pulmonary Function Test and a chest x-ray.

The Dr. was showing us the x-ray and said the DS had a mucus plug on one of his lungs. I asked if this was normal for asthma patients and he said "no."

I said well what is it normal in and he said Cystic Fibrosis. Of course, I tried not to automatically assume this means DS has CF. He has to have a sweat chloride test and they can't get him in until May 17. We will find out the results the next day-the day before we leave for Florida.

I should be a complete mental case by then.

So, what do you know about mucus plugs in the lungs? Is this bad?

Any information you can provide is very much appreciated!!!!!!!

 

[RitaZ.]

I have no experience with CF. DH does suffer from asthma and sees a specialist every 6 months.

I found this for you on webmd.com:

http://my.webmd.com/hw/health_guide_atoz/hw188575.asp

I know it's easier said than done, just try to not think the worst.

Hope that everything works out for your DS and it's nothing serious.

 

[piglet too]

No help, just wanted to give you 's

 

[floridafam]

Thanks for the hugs.

They mean a lot!

 

[steveanddonna]

First of all.... and prayers for everything to work out all right, floridafam You have had about the worst run of luck imaginable. My mom had COPD and my cousin had childhood asthma (which he outgrew) and both would develop mucus plugs during and subsequent to upper respiratory infections. I don't know if your DS was one of the family members who was sick this past spring, but perhaps there's a connection. I'll keep my fingers crossed!

 

[floridafam]

steveanddonna,

Yes, he was sick this winter. He has constant colds, cough. He'll just get over something and then get it again.

We had enough and he finally got in to see a specialist. He does have asthma. He was having breathing difficulties today and we didn't even know it.

He was supposed to be under a certain number on his pulmonary function test and was way above.

I hope this mucus plug is just something to do with asthma or the cold he has now.

It seems weird he wouldn't be tested for CF until he's almost 8 yrs old. I thought most people were diagnosed as babies.

Thank you for all of the information.

 

[Lorix2]

Please try not to worry - see another ped if that will make you feel better about it.

My DD has asthma (12) and xrays have shown pockets too when she's sick with bronchitis/pneumonia.

Have you had your DS tested for allergies??

 

[snoopy]

I read a little about cystic fibrosis when I was pregnant with my 2nd child and found out through genetic testing that I was a carrier for CF. Fortunately, my husband was not, so our chances of having a child with CF became nil.

Now I could certainly be wrong, but I would think you would know if your son had CF before he was 8 years old. Has he been hospitalized frequently? It was my understanding that most children with CF spend a great deal of time in the hospital with life threatening scenarios. I'm hoping that this doctor is being overly cautious (but shame on him for putting that in your mind wihtout knowing it to be a fact!)

I'm going to pray for you and your son. Please do keep us updated.

 

[floridafam]

My DH is kind of upset that the Dr. would just throw that out right in front of our son. What if he doesn't have it?

Of course, DS doesn't really know what CF is but I do.

He pointed out 2 things on his x-ray. There were little pockets of something near his airways that was a sign of the asthma. Then there was the mucus plug.

I don't remember 1/2 the things he said. We had to go downstairs so DS could have blood drawn and the lab was all open and there were about 3 kids in there getting blood drawn and it was not a pretty sight.

I'm hoping this mucus plug is just from something else.

Thank you for all of the information and good wishes.

 

[piglet too]

I have to agre with the others that if he does have CF, you would probally would have known by now. Due to some problems my daughter had when she was born ( a mycenium plug) the NICU doctors told us that she may have CF. My pede was livid that they told us that as she was only 5 days old at the time. They do keep it in the back of their minds, but so far there has been no other symptoms. I know that going to the medical sites can be a bad thing, but it puts my mind at ease to go look at it and see that she really has no symptoms at all. How soon should you get some results on the blood tests? I am keeping you and your son in my prayers.

 

[gina2000]

My son was tested for cystic fibrosis when he was 4 after a terrible asthma attack. He was hospitalized for 4 or 5 days and at the end of the visit the doctor asked that he be tested for CF with a sweat test. He also had a blood test done to check for a compromised immune system. He did both and all tests came back negative.

From what I can remember, our pediatrician told us that a history of respiratory problems and general weak health is a sign of a problem. Coloring is another. He never mentioned a mucus plug but my son's x-rays didn't show any.

My son's pediatrician also asked for the test in front of our son. I almost fell over in shock and fear. My husband called in the middle of the discussion and I thought he was going to die right then and there on the phone. The doctor had to get on the phone to explain everything. At that point, I couldn't. It was one of the worst moments of my life. My son didn't even notice.

Please try not to panic. Your doctor is looking to rule out everything.

I'll be saying a prayer for your son and for your whole family. This is such a stressful time for you all.

 

[tiggersmom2]

Your family is in my prayers

 

[floridafam]

if he does have CF, you would probally would have known by now

I was thinking the same thing. He has had chest x-rays before and nothing was ever said. The Dr. today did say that his current x-ray would be interpreted as normal. What that really means, I don't know.

He did say that they have to do this test just to rule it out.

DS never really has trouble exercising, fully participating in gym classs, etc. It's a little shocking we have to now give him medicine every morning and every evening.

Thanks everyone for all of the information.

I'm going to keep a positive attitude about it and hope for great news on the 17th.

 

[RitaZ.]

It's a little shocking we have to now give him medicine every morning and every evening.

I understand how you feel, DH takes his asthma meds every day. It's not something that is thrilled about, but he realizes that it's something he will have to do for the rest of his life. He doesn't have wheezing or tightness (very rarely happens), but asthma is treated differently now than it was years ago. The approach with meds today is all about prevention.

I think it's great that your DS is seeing a specialist for the asthma, many asthmatics don't.

 

[monarchsfan16]

Good thoughts, and prayers that the worst is not true.
However, I did a lot of research on CF for a report about a year ago, and it can develop in the teen and even adult years. Which is why they are trying to rule it out.
I know many people who have been tested for this, for the same reason, and tests came back negative. It was all related to asthma or other issues at the time. Hopefully this will turn out to not be the worst case scenario.

 

[phamton]

I had a cousin who died of CF at age 12. My own son was in the hospital several times before the age of 3 years old with asthma and pneumonia. They tested him for CF when he was in the hospital and it was negative. I was so relieved as I had been very close to my cousin when we were growing up. My cousin was one year younger than me so I witnessed all the things he went through with CF. Just like most diseases there are different degrees of CF. I know a woman who is 30 years old with CF. She is fairly healthy. And yet, I've seen children who are gravely ill at age 2 years old with CF.

The first recognizable pointer to CF is when you kiss him, does he taste salty? I seriously doubt that he has CF but I'm sending prayers your way just to be safe.

 

[Kallison]

My neighbor's DD was tested for CF and it was a negative. Try not to assume the worst. I'll be praying for you all. I think it stinks how they make you wait for tests so long.

 

[floridafam]

phantom,

Sorry about your cousin. I wish kids didn't have to go through these things.

No, he does not taste salty. I remember people kissing their little babies to see if they were salty many years ago to test for CF.
He doesn't even tast a little bit salty.


One thing that puzzled me was when the doctor asked me if I did any craft projects that would cause fumes or anything to bother my son, he also asked me if I clean with any strong cleaners.

I told him no and then told him I do clean my house frequently and coudl this be bad. He said "I'm not going to address that right now." He completely stopped the conversation. It was really weird. I didn't know what to say.

 

[VAgal76]

Oooohhh, darling! 's X 10 for you and your little one! You guys have had it really rough lately. We're here for you when you need us. Keeping you in our constant prayers....

 

[floridafam]

Just bumping in hopes for some more information.

Thanks for all so far.