New, scared, and African American

B

bmombtoo

New member
Hi,<br>
I have enjoyed reading everything I have read today and I find
myself almost consumed with wanting to know more.<br>
<br>
My son,Josh, is 12 years old, birthday early this month, and on
Monday he had a sweat est done that scored a 70. He was born at 32
weeks, had three respiratory infections that required
hospitalization before the age of three, and has a diagnosis of
asthma and allergies. In early May he had a sinus CT scan that led
to sinus surgery. I thought things were fine until his allergist
called and said he needed a sweat test because they found polyps in
his sinus cavities according to the pathology report. After the
test was done he called right away and referred him to John Hopkins
for another test. He will have that test on Monday, He is also
scheduled to see the specialist on the same day, too which his
allergist thought was odd and made me worry even more. To add fuel
to the fire, two days ago he called and suggested I take the sweat
test with Josh as I have chronic asthma. I'm 50 years old.<br>
<br>
CF is really rare in African Americans and presents atypically.. I
keep trying to convince myself that his test was a fluke.<br>
<br>
HELP!!!!!!
 
W

wanderlost

New member
wow. CF isn't too common in African Americans, but not unheard of. I would guess that if you have it or if he does, you have some of the rarer mutations, which you might want to ask for a genetic test anyway, if your sweat tests are showing positives. Hang in there until you have an actual diagnosis. I know it seems very scary, but you'll find that Cf has a broad range of presentations and medicine has come a long long way in the fight against it. Keep us posted.
 
L

LouLou

New member
If you've dug around on this site and search 'African American' you've probably run across this link <a target=_blank class=ftalternatingbarlinklarge href="http://www.milanfoundation.org/">http://www.milanfoundation.org/</a> but if not it might be useful. Just remember that a diagnosis is better than not knowing what is wrong and that it couldn't be a better time for us CFers. There are a lot of really good therapies on the horizon. My understanding is that there is never a false positive only a false negative. I wouldn't stress about yourself having CF at this time. It's good to get tested but also realize that alot of carriers present with light symptoms. Sinus issues is a big one. Good luck and keep us posted. We're here for you.
 
B

bmombtoo

New member
Thank s guys for the support; just hearing from you is making this
better. And LouLou, thanks for pointing out Milan's site.<br>
<br>
Dolline
 
J

JazzysMom

New member
I am very glad to hear that the testing is being done. There have been patients denied CF testing because they are of a race that it is rare. Better to find out even if its a low chance than to learn the hard way.....Keep us updated!
 
A

Alyssa

New member
Yes, it is scary, but I agree with Melissa - it is better to know for sure and then you can benefit from the correct treatment. You are fortunate that you have a doctor who is on top of things and wants to test your son (and you) because many people (even Caucasians who have a far greater chance of having cf) get told "oh, it's pretty rare, I don't think it's necessary to test for it. Sounds to me like you have a great doctor.

You can click on my blog for info about my kids -- the doctors told us my daughter had "asthma with productive cough" for years -- it wasn't until age 13 that she got the blood test that proved it was CF.

Hang in there, and be sure to tell us how the other tests go.
 
B

Brad

New member
I met a a Family back in the 80
at Georgrtown, 3 out of 5 siblings
have Cf and they are African American
I was told at that time that there about
7 more African Americans that came to Dc for treatment
that have Cf....
Some of maybe to not test because
it was thought not be something AFR Americans
would find,,,

It is also true that a lot more people are being Dx
in there 30s and 40s now too...

maybe it is just that they were not looking
for it and ofcourse they beleived it wasen't there,,,,
 
D

DEES4

New member
When my son was diagnosed I heard of an African American family who had 4 children and all 4 had cf. Then when my son was in the hospital he had an African American nurse who had a child the same age as my son who also had cf. She had actually had worked on the pulmonary floor with cf children for years before actually having a child of her own with the disease...kind of strange...So it is rare but not unheard of and you are definitely not alone!
 
D

debs2girls

New member
My daughter was one of the one's not tested for C/F because she is A/A. We changed doctors, got her tested and are now treating her C/F.
Good luck to you, both.
 
B

bmombtoo

New member
Debbie and all;,<br>
I think I read about your daughter as I was looking around the
first day I signed up. In fact reading about her is what made be
post. I have an adopted child also who was tested at 9 months and
was negative. I have two biological children that are 12 years
apart; Josh is the you "can't have any more kids
baby".<br>
<br>
All three of my boys have asthma. and seem to have complicated
medical histories. Josh by age nine moths was on the nebulizer, and
when ever I stopped he would get green loose stools that we thought
were from sinus drainage. Many formula problems, reflux that thank
god did not need surgery, and by age four or five needed sinus
surgery. When he gets sick it is usually his stomach that starts
first and a neb treatment makes him feel better. He had sinus
surgery in May and the polyps were found. Looking over it all now
it sounds like CF. <br>
<br>
If his diagnosis is confirmed tomorrow, and I have given up
thinking it was just a fluke, I will have my oldest son tested. He
had a hard time gaining weight as an infant, was often sick, had to
get Gama Goublin shots, and had rectal surgery at age five because
of problems with the nerve endings. Most recently, about one year
ago he had a collapsed lung. He was in a store had a terrible pain
in his chest and was taken by ambulance to the hospital. He is 24
years old.<br>
<br>
Oh by the way I told my mother and sister-in-law last evening about
Josh and they said one he is stabilized we can control the whole
thing through diet and without medication. LOL.  I'm use to
their "over-medicated" responses. Josh's father, my first
husband died from Hodgkins disease 10 years ago this September. The
arguments over treatment approaches go way back so nothing
surprises me anymore.<br>
 
M

meadow

Guest
Yes, check out milan foundation. Milan's mother is Lisa and she would be a great person to contact. She was very helpful to me a few years ago. She lives in California.

Where do you live


Debbie
Virignia

P.S. My son was diagnosed at age 15.
 
You must log in or register to reply here.
Top