Any experience with cystic fibrosis? Asthma?

[BambiTamby]

Wish I had some info for you, floridafam.

Just more {{{HUGS}}}} and to tell you that we're constantly praying for your DS, you and your whole family!

Like dreamflight always says...."Think POSITIVE thoughts!"

 

[calypso*a*go-go]

Don't Panic !!! My DD has needed asthma medication since she was a toddler. She is now 11 and we have weaned her off almost everything but meds. to keep her allergies under control. They are the real culprit...you will need to treat that first and foremost. In our case, we had two cats that we could no longer keep and had to make some changes to our living environment. I agree with others that have said your son really should have shown symtoms of CF before this. Also, has he ever been treated for other respiratory ailments (pneumonia)? If he's made it this long without being hospitalized, his chances are pretty good that his asthma is going to be very "treatable".

What meds. do they have him taking? At one time, my DD was using Flovent, Zyrtec, Singulair, and Albuterol as needed. Also, make sure you get a nebulizer to do his breathing treatments That method is not as convenient as using an inhaler, but IMHO, is so much better to really clear up the congestion. Half the time, people (especially kids) don't even use the inhalers correctly.

Hang in there -- we have so many more treatment options now than even five years ago and many more on the horizon!!!

 

[Kristi1357]

I am no expert, but it sounds like they are just ruling things out. I have asthma, have had it all my life, and it is very manageable.

Also, my SIL is marrying someone with CF in June. He's 28 and relatively healthy. He was hospitalized the first time since he was 8-10 this past winter.

Hang in there!

 

[jx3smom]

My DS's girlfriend has CF. She was not diagnosed until she was in 3rd grade. Knock on wood, she does very well and you would not know something is wrong except that she does cough a lot. But, not being diagnosed until that late is very rare.

 

[MamaTink]

hugs and prayers coming your way

 

[my3kids]

When he was baby did he "taste" salty when you kissed him when he had worked up a sweat crying? Children with CF will actually "taste salty" when they sweat. Has he grown normally? As a baby did he have greasy stools? Strange color stools?

CF is often suspected by recurrent coughing, failure to thrive, bowel differences.....have you ever seen anything?

One in 29 caucasion Americans is a symptomless carrier of the defective gene. 1 in 29! That is astounding, I think. It takes both parents to pass on the defective gene. Parents who are both carriers have a 25% chance of having a child with CF or a child who is not a carrier. Likewise they have a 50% chance of having a child who is a carrier, but does not have CF.

Look at www.cff.org for the Cystic Fibrosis Foundation. Boomer Easiason has a son with CF and has a foundation to fund research. You can fnd his website for information as well.

This wait must be so hard. I'm so sorry it isn't for another few weeks. Chances are good that all is well and something that is showing up on X ray is residual from a bought with bronchitis or pneumonia. Hopefully you'll find out all is well.

You'll be in my thoughts.

 

[my3kids]

I just read all the replies and you said he didn't taste salty. GREAT sign!

On the craft glues and cleaners, some strong ones could damage the lung and cause scar tissue to form which can be seen on xrays. Might be a routine question he has to ask every patient to see if the lungs could have been exposed to anything that could cause damage and subsequent scar tissue to form.

 

[Dan Murphy]

No thoughts to add at all here, floridafam, but know your son is in my prayers and hope all is well and nothing serious. My best and thoughts are with you guys.

 

[Chuck-PA]

My son is 16 yrs old with Cystic Fibrosis. He was diagnosed at 7 months of age. It is true that most are diagnosed early but a lot of research has been done in the last 10 years since the gene was found, that early diagnoses of asthma are being tested for CF and in turn has been rediagnosed with CF.

The true test will be the sweat test. They may have to do two sweat tests to diagnose, sometimes the first comes up in the gray area or borderline. Therefore, they may have to repeat the test, it then may come back just a bit higher and they will determine then he would have CF.

A mucous plug is what it is. A piece of thick mucous stuck in the little branches of the aveoli. What we do to remove a plug is place our son in a draining position. Place the body in a slanted position. Head and shoulders down and hips up. This can be done laying across your body with pillows on your lap and he places his hips on the pillows and his head on the couch or bed. If you remember where the plug was located (upper right, lower right, upper left, lower left)
"Clap" on this area for at leat 2 minutes, the most 6 minutes.
(Clap is to cup your hand and just tap, you will hear like a clapping noice and start a rythmn sound). By doing this you will loosen the plug and he will cough it up and out. This does not hurt him in anyway. If he does say it hurts, just give him tylenol for the pain.

My son leads a very normal life. He plays flag football and is the best player on the team. He has only been hospitalized 4 times in his whole life. Each CFer is different. Some it affects lungs, some digestive, some both.
If you have any further questions, let me know here or just pM me. I will be able to help address any concerns you may have.

 

[floridafam]

Thank you everyone!

DS certainly thrives from birth through the present.

He was almost 10 pounds at birth. He grows like a weed. He just went up 2 shoe sizes in the last 3 months.

He's very active and has never had to stop an activity because of breathing difficulties.

To be honest, I'm kind of upset the Dr. would just throw that out in front of him and I'm also upset he was "short" with me. I was very level headed. I didn't go on and on and I asked a legitimate question.

They do have us on the waiting list to get in for the sweat chloride test if someon cancels. From what I understand, DH and I could have blood drawn to determine if we are both carriers of the CF gene. If we are not, then there is no way he could have CF. Is that true?


ChuckPA,

Thank you so much for your information. I may PM you. I'm glad your son is able to have a normal life. My best wishes to him.

 

[luvwinnie]

I found this on www.cff.org

CF occurs in approximately one of every 3,200 live Caucasian births (in one of every 3,900 live births of all Americans). About 1,000 new cases of CF are diagnosed each year. More than 80 percent of patients are diagnosed by age three; however, nearly 10 percent of newly diagnosed cases are age 18 or older.

Praying your son does NOT have it.

 

[my3kids]

FloridaFam: You are correct...if either your or your husband is not a carrier, then your child can not have CF. If even one of you is, your child could be a carrier, but carriers do not have CF...they are symptomless. You either have it or you don't. Carriers have no involvement or problems. If you and your spouse are both carriers, a child could have CF...a 25% chance for each child born. So even if you both are carriers, there is a 75% chance he would not have CF. To have been healthy since birth until this one x ray, I bet all will be okay Hope you get in off the waiting list.

 

[gina2000]

Chuck....I was asked to do "clap" my son's back while he was in the hospital in order to loosen mucus. I had forgotten about that.

I'm very glad your son can lead a normal life.


Good luck, floridafam. We'll all be thinking of you.

 

[bubbleprincessmom]

Both my brother and son suffered from CF. It is a terrible terrible illness. My brothers CF wasn't discovered until he was 14. CF can affect children differently,some are very sick in early childhood some don't get really sick until their teen years,while others are now living into adulthood. The Docs seem to think it may have to do with either the growth spurt of the teen years or the hormone changes or both. My son was an infant when we were told.
Sadly both boys died at the age of 18. The good news in all of this is the progress that has been made in this illness. Drugs that my brother was involved in clinical trials with as "experimental" were routine when my son was born (think "tobrimiacian"). Drugs that were in clinical studies involving my son are also now routine. I pray someday this illness is cured. In fact they can cure CF in the test tube!!! Their getting close!!!!!!! If in fact your child has CF you need to know so that treatment can be started. Any questions, concerns, please feel free to ask.

 

[floridafam]

Here's the latest.

I refuse to wait until the 17th for the test.

We have two hospitals in the area. Sparrow and Ingham Regional Medical Center.

Our insurance only participates with Sparrow. They can't get him in until the 17th. Ingham can get him in tomorrow. Needless to say, I'm taking him tomorrow. I don't care if I have to pay cash.

I think it's horrible they are able to get him in tomorrow and the insurance company may not pay for it because it's at the "wrong hospital" but I don't care. Another funny thing is that it would be paid for in full no matter what if he came in through the ER.


Oh well, we're going tomorrow at 7:30 am and we should have the results by the end of the day.

Thank you all for your information! It has been so helpful.

 

[floridafam]

The Dr.'s nurse called me this afternoon and cleared some things up.

She said the Dr. does not think he has CF but has to rule it out.

Some of his blood work is back. Most of it is normal. His IgA is supposed to be between 57 and 204 and it was 33. This means he gets infections more easily (so true) He hardly gets rid of a cold and gets another one.

The Dr. also was able to get us into the participating hospital on Tues. morning for the sweat chloride test.

The nurse talked to me for quite a while and answered a lot of questions DH and I had. It was much easier to grasp all the info today.

Thanks for all of your support!!!!!!!!

 

[snoopy]

I'm so glad you are taking hm to the other hospital. I've thought about you ever since I read your post. Please be sure to update us when you can. I will continue my prayers for you and your son.