I am so confused.. please help

[trish91393]

<img src="i/expressions/face-icon-small-confused.gif" border="0">hello, my son who is almost 13, is currently being
treating for a growth disorder.  they diagnosed him in 2002,
but now after 4 years of growth hormone therapy and no improvement
in growth they are testing him for CF.  He has never had any
breathing problems, but has short stature and very slow growth.
 He is 62 pounds and 4' 4.68".  He is also bipolar,
ADHD, OCD, ODD, over active, bed wetting and bowel problems.
 I am very confused and looking for answers.  They did a
sweat test the other day but have to re-do it because he did not
sweat enough.  Anyone have any ideas?????   please
let me know

 

[hockeygrl61]

Cystic Fibrosis doesn't effect just the lungs. It also affects the
digestive system which makes it harder for us to absorb nutrients
which leads to slow growth and weight gain. Some people have very
little problem with their lungs and have more digestive problems.
I'm not sure all of the tests they use to diagnose CF now, I was
diagnosed by sweat test, but I think they might be able to do a DNA
swab to test for it. They only thing with that is I think it may
take a few weeks to get the results. If your doctors aren't sure
maybe you could try to find a CF clinic in your area and talk to
the doctors there, they might be able to help.

 

[amber682]

    CF can affect the pancreas, which affects
digestion. It could be the cause of both the bowel problems and
could cause poor nutrition. Your son wouldn't necessarily have lung
problems, there are a lot of people who aren't even diagnosed until
they're much older. There was actually a patient at the nursing
home my mom-in-law works at who was just diagnosed recently, and
she's in her 60's I think. She said she only had a few problems
with pneumonia, but always had trouble gaining weight or keeping
weight on. I'm not sure what made them test her, but I think it was
some sort of lung problem and maybe family history?<br>
      Try not to panic, I know its
scary. It's always better to have a diagnosis, even if it is CF.
There's a lot going on with CF research lately, and I think the
future is very bright. Like Shelly said, even if the docs
can't get an answer by the sweat test, they'll probably just do a
swab (or maybe blood test?) I hope everything goes well, and keep
us posted. I've found there's always someone here that understands
or you can talk to.  

 

[trish91393]

Thank you both...He goes to have the sweat test redone on
wednesday, I should know the next day when i talk to the Dr.
 I will keep you posted.. thanks again for your support!!
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[trish91393]

hey it's me again.  I have a couple questions for anyone
willing to answer... To all you parents with children with cf, have
you experienced behavioral problems in your children... they say my
son is ADHD, OCD, ODD and Bipolar... I wonder how much could be
partially due to CF, if he is diagnosed with it!  Also, (I
hope this does not sound shallow)  I have read so many stories
here about CF patients losing their battles due to the lung issues
of CF. I wonder if the Digestive problems could cause the same out
come.. I am very scared and worrying myself to death, I know I need
to relax but it is sooo hard... any input is greatly appreciated

 

[JazzysMom]

I am not a parent of a CFer, but I am a parent, I have CF & have read a lot from the parents with kids that have CF. I believe quite easily that some of the "seperate" diagosis your child has received could be all part of the CF package. Many of us are OCD (whether officially dx or just display symptoms) as well as BiPolar (emotional ups/downs/rollercoaster is normal when dealing with any chronic illness & its a natural way for your body to respond to the traumas it goes thru). I am by no means saying that these are not true & seperate issues, but I am saying there is a good possibility they are all intertwined! Does that make sense?

 

[norcotrent]

Trish,

You may want to post this in the family section to get more replies.
We'll be thinking of you tomorrow. Remember, diagnosis (if positive) of CF only means that your son will finally be able to recieve the treatments that he needs to have a better quality of life. As parents, that is ultimately our # 1 priority.

God Bless,

Trent
Dad to Em (5 no cf) and Cass (18 mo's w/ cf)

 

[trish91393]

hey everyone, shawn's test came back negative!!  they told me
his number was 14 and 15 out of the 2 samples they took from him!
 I am still kind of worried as to what is really going on...
after 4 years of growth hormones with no significant improvement..
and the other issues.. what could be wrong???  Thank you so
much for all your prayers!!