Worried...

[anonymous]

Hello,
I have a couple questions for you all I hope you don't mind. My 7 1/2 yr old son was dx with Asthma about 2yrs ago. He wasn't put through any test the docotr just went off my concerns, which is his chronic cough. His cough seems to come every 1-2 months lasting anywhere from 1-2 weeks. He will cough so much that he almsot pukes, and has a hard time catching his breath. However he doesn't wheeze or have any other symptoms of Asthma ,it is just a cough nothing else. I do think he is allergic to dogs.
About 3 weeks ago I took him to the ER because he was complaining of a really bad stomach ache. He had no fever, he had gone poop. However the docotr said he was constipated. So he is currently taking a laxative Lactulose. I have been searching the web and been reading up on CF and I kind of got concerned with the cough and constipation part.

Now my son has or has never has growth issues he is in the 90% height and weight. I never noticed greasy or bulky BM, but I never really looked before I am looking now.Is the bulky greasy poop something that would jump out at me, something that is VERY noticeable? Or do you really need to look for it? Yesterday when he went some of his poop was floating could his laxative medicine cause this? I recently brought him in for his cough and they said he sounded clear no wheezing when a child has CF is it really noticeable when they listen to their chest?. He doesn't taste salty he thinks I am NUTS for licking him a few times yesterday. Also when he has his cough I give him OTC cough suppresent Deslyum and it really helps. Would and OTC cough medicine stop a CF cough?

When I was pregnant with him I had an amnio. My oldest son has Down syndrome. I am not sure though that they looked for CF and just not at his chromosomes. Would CF just show up on and amnio? But it was 8 years ago I am not sure if protocall has changed. I am currently 25 weeks pregnant and refused AFP and CF testing. just because I would never terminate. However do you think I should ask my doctor to give me the test to see if I am a CF carrier anyway?

We go to the docotr Monday for a re-check he had an horrible ear infection 8 days ago so I will bring these concerns up to him then about CF. Also we started him on Singular for Asthma yesterday. I hope I don't sound nuts because I really am not. I have been through alot with my oldest son medically that I usually don't freak out. I just would like some advice and opininons from other parents because sometimes I think we KNOW more than our doctors! And it may rest my mind if some of my questions are answered. I am just worried becuse I have never had anyone in my family with Asthma and it just seems weird that a cough that comes often is dx as Asthma. Any help would be great. And I hope this makes sense! Thanks
Anne

 

[thelizardqueen]

When it comes to listening for wheezing in the chest, not all CF patients have that. When I'm not sick with an active infection I do not wheeze or cough at all. When I have an active chest infection I cough, but I hardly/do not wheeze. If you give your child cough medicine with a cough suppresent in it, it WILL stop the cough - period. I've been on cough suppresents before, and absolutly no cough will come out of me.

If I were you, I'd get the amnio to at least see if the new baby you're carrying has CF. Just because you get the amnio doesn't mean you have to terminate. ANd I would also find out if you are a carrier as well. Is there any history of CF in your family at all?

I think if anything, if you are concerned, bring this up with your doc. If you want to test your child, you should get a sweat test, and a DNA test done at an accredited CF centre. At the same time though, if I were you, I'd get yourself tested to see if you are a carrier, as well as your husband first, before you do any testing on your baby. That's just my two sense.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[folione]

CF symptoms can be all over the map - so cough, lung sounds, bowels, saltiness, aren't really much to go on when they're not all pointing in the same direction as in your son's case.

You're already in for plenty of tests so you may as well get the CF screening. If it's positive you'll have a reason to get your 7 y/o child tested (and your spouse) If you're negative and the test was not for the full 1,000+ variants, you might still want to ask the pediatrician about testing your child; if you can get the full genetic screening (from Quest) it's going to be the quickest route to a conclusive answer; sweat tests can give false negatives.

CF can complicate things for an unborn baby so I'd suggest it's worth knowing in advance.

 

[anonymous]

Thanks for the replies.
There is NO family history of CF in either sides of our family.Is that something I should take as a good sign he may NOT have it? Also I have read it is more prevlent in caucasins my dh is hispanic and I am white. However numbers and odds don't mean much to me since no one on either side of our family has Down syndrome, I just so happend to be the 1 in 12,000 19 yr olds that gave birth to a baby with Ds 11 yrs ago.
I go to my OB Thursday and I will request the CF screening, that might be the quickest route. However I will still talk to his Ped next Monday. I am just nervous because it I know with Ds not all kids have all thel health issues just like all kids with CF have all the symptoms. Thanks for the replies.
Annie

 

[thelizardqueen]

Just because there is no family history of CF, does not mean that you or your partner, or someone in your families is not a carrier. Yes it is more prevalent in caucasians, but hispanics can have CF too, just like any other race out there.

 

[anonymous]

I would have to say that, Yes the poop thing is very noticeable, at least it is with my two sons that both have CF. They tend to be very gasey, and the gas has a really bad/strong odor, poop is VERY loose almost like diarhea, all the time, never in a solid form for my two.
HTH

 

[anonymous]

With DS we didn't have a family history. Was a total surprise. His stools with not enough enzymes are kinda shiny (greasy) and smell like feta cheese -- TMI, but he eats a lot of dairy <img src="i/expressions/face-icon-small-smile.gif" border="0">

I met a lady with a child DS's age who wasn't diagnosed until she was a year and a half. She actually had constipation issues and had gotten RSV and a couple of other upper respiratory infections. Also, there was an article in Good Housekeeping ? about three years ago in which a newborn was diagnosed thru newborn screening and they went back and tested the child's older sister -- this child had only ever had an ear infection, was never sick. She ended up having CF, too!

 

[thelizardqueen]

There are people in their teens and adulthood who have not been diagnosed earlier because they're symptoms were so mild. I would say to bring your concerns up with your doc and ask for a sweat and dna test.

 

[anonymous]

I just wanted to add a few things. First, I think the carrier testing is kind of a waste of time. They usually only look for 25-89 mutations when there are well over 1200. It's just that the 89 that are tested for account for close to 90% of the cases of cf. However, that is in caucasions. The detection rate on the screening tool is much less reliable in Hispanics because it is designed for caucasions. As a general rule though, hispanics have a slightly lower rate of being a carrier for cf. My main issue with the carrier screening is I think negatives give people a false sense of security.

Next, on the amnio, I agree I would not have an amnio. Just not worth the risk (and the risks are very real). If your older child was dx with cf, then amnio may be a better option for your piece of mind.

Next thing, everyone, even healthy people occasionally will have floating stool. If it happens frequently, is greasy/shiny looking, your ds complains of very frequent stomach problems, very frequently has loose stools or constipation, or is not gaining well, then I think you should be more concerned.

Next thing, cough is actually the #1 symptom of asthma. Asthmatics cough more than they wheeze (in general). Yes, there are those that wheeze more than they cough, and then there are those that both cough and wheeze, but there are also those that NEVER wheeze (cough variant asthma.) We're a family full of asthmatics, my side and dhs. Some wheeze more than others. Some don't wheeze at all. Also, coughing to the point you can't catch your breath and/or even to the point of vomiting is common with asthmatics.

My personal opinion - request a referral to an asthma specialist - particularly a pulmonologist. If possible, a pulmo whose also affiliated with a cf center. That's how my kids got their sweat and genetic tests. First they were referred out for the asthma, then the specialists tested. The main reason I suggest this is that in the event that your ds does not have cf (which the odds are in your favor that he doesn't), anyway, he will STILL have asthma and will STILL need proper treatment for that. A pulmo or really good allergist will make all the difference with his asthma.

Good luck!