New to CF, confused

[trish91393]

Hello, my son who is almost 13(9/13), 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, very slow growth, over active bladder, bed
wetting and bowel problems..he was hospitalized 2 years ago with a
bowel blockage. He is 62 pounds and 4' 4.68". I am very
confused and scared for my child. They did a sweat test the other
day but have to re-do it because he did not sweat enough. another
thing that i am curious about is as a parent of a child with CF
have you ever 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.
We are going back tomorrow morning to have the sweat test redone.
Hopefully will have answer tomorrow afternoon... hubby going with
this time... had to work last week... hopefully Shawn will do
better... he really freaked out last time.. because he has been
tested for so much and so many times he is very hyper- sensitive to
just about everything!! Thanks to you all for listening to my fears
and ranting!!! Trish, mom to Shawn(12)(testing tomorrow, dx
pending)

 

[Alyssa]

Hi Trish,

Hang in there! To answer some of your questions:

My son also has some OCD traits along with autism spectrum developmental delay -- there has been some talk about if autism and CF have some sort of connection but I don't think there is any overwhelming evidence.

I haven't seen anything else to indicate any of the other things you have listed could be caused by or exacerbated by the CF.

I don't feel very qualified to answer your question about if digestive issues alone could cause the death of a cf patient -- I know that with pancreatic insufficiency there are other issues with pancreatitis and also liver damage/disease but I would venture a guess that most people succumb to the lung issues but also lung issues and overall health and ability to recover from a lung issue is driven by your ability to maintain your weight from good digestion and nutrition.

I hope you get a definitive answer tomorrow -- however don't be surprised if you don't -- not everyone gets a clear cut positive or negative sweat test number that you should be happy with -- unless his number is clearly over 60 -- read my blog entry for information about sweat test numbers. If there is any question push to get full genetic testing.

Please be sure to come back and tell us how it went.

 

[Mockingbird]

Yes, digestive issues can cause death by malabsorption, but only if they are not treated. That is, our pancreases can't produce enzymes to digest the food properly, so it is like we are not eating anything at all. By taking oral enzymes, however, the problem is no longer a threat.

 

[letefk]

I think we have all faced the kind of fear you feel. Remember, though, that if it is CF, that treatment has come a long way, and it continues to improve. Also, there are lots of shades of grey with this disease. If he has not had any lung issues yet, that is a really good sign, because the digestive issues can be treated. There are degrees of severity, and not every person with CF experiences the same symptoms.

 

[bmombtoo]

My son was just tested Monday and though his sweat test was
negative this time the doctors are giving him quite a work-over to
figure out why he is sick a lot and has nasal polyps. CF hasn't
been ruled out. I was very scared and still am. But now the scared
is taking the form of information gathering and reading this web
site. The people here are wonderful and they can give you answers
that many other people can't give, even family. My oldest son was
treated with growth hormone and it did work, he had a lot of
respiratory problems also. About a year or two age he had a
collapsed lung.My son, Josh, is the one being tested for CF and he
is on the short side but is on the growth curve (and not making his
won like his brother did).  When Josh saw the doctor Monday
they were just as interested in his brother's history as they were
his. My history of asthma was important also.<br>
Now for the emotional/behavioral issues. You bet they could be
related. Not that short growth or CF causes emotional problems but
they are very serious STRESSORS in any family's life. And with him
,his height stands out for every kid in the world to
notice.....some are kind and some are cruel. Josh has ADHD and
depression. My first husband died when Josh was two his bother's
were 11 and 13.  Josh becomes very upset when any one is sick
and is often anxious. He sees a psychologist. I see a therapist on
a regular basis for many reasons and it helps. I do hope that you
guys are seeking some sought of support for these mental health
issues. I know......not another appointment; but this one may be
worth it.<br>

 

[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!!