Please Help - My son's symptoms - Doctor won't test for CF

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anonymous

New member
In the book, Cystic Fibrosis: A Guide for Patient and Family, by David M., Md. Orenstein, Dr. Orenstein says up to half of the sweat tests performed at local hospitals (not cf centers) are performed inaccurately. The people who perform the tests do not have enough experience or training which leads to mistakes in testing.

Here is a link to find out more info on the sweat test.
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/living_with_cf/patient_and_family_education/diagnosing_cf/sweattest/
">http://www.cff.org/living_with_cf/patient_and_family_education/diagnosing_cf/sweattest/
</a>
How frustrating for you that your child's doctor is not listening to you and not doing everything possible to determine if anything is causing your child's medical problems. My nephew was not diagnosed until my newborn daughter tested postive for cf. He was four when diagnosed and his GI doctor thought that he didn't have the "right symptoms" to test until he found out it his first cousin had the disease. The disease varies from person to person.

Here is a good link to find more info on cf.
<a target=new class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/CF.htm
">http://www3.nbnet.nb.ca/normap/CF.htm
</a>
Hope your son does have a negative sweat test since this is not a disease that you obviously want to be dealing with. But if he does have the disease than it does bring help and solutions to some of the medical issues that your son if facing. For my children it gives us the medications and treatments they need to stay healthy, active and full of life!
Sharon, mom of Sophia, 3.5 and Jack, 1.5, aunt to Joseph, 7, all with cf
 
L

lbarnhil

New member
Anxious mom,
Please let us know the results. I wish you the best of luck and you will be in my thoughts.
Thanks,
Lynsey
 
A

anonymous

New member
Anxious Mom Again,

I hounded the doctors until they approved the sweat test, but the machine was acting up and it took the nurse three times to get 'enough sweat' for the lab to test.

The results came back at 14 - so the doctor said - "that's the end of that." When I asked about the mutations, some of which I know give negative readings, I basically got a non-response. My son has so many of the symptoms, I'm afraid to give up. Any suggestions?
 
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CFHockeyMom

New member
Well, the sweat test is quite low which is very encouraging. However, it does sound like they had some trouble. Was the test done at an accredited CF center? If so, then your child probably doesn't have CF. Sometimes though you need to trust your intuition and the only way to put your mind at ease may be a blood test.
 
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rose4cale

New member
I second the blood test! Honestly, they couldn't get enough sweat from my son at the accredited CF center so they sent in a blood test. The wait is agonizing, I think it took 3 weeks for results, but my instincts were right. Please follow your gut.
 
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anonymous

New member
Anxious Mom Again,

The test was done at our local hospital. The nurse 'appeared' to know what she was doing, but again, the machine malfunctioned three times before a "watchdial" turned blue around the edges. We were there for over 2-1/2 hours. Also, the doctor 'forgot' to mention that John should drink a lot of fluids before the test. All he'd had that morning was milk on his cereal. (He's not a morning person and I sometimes have to force him to eat first thing. Breakfast seems to be the hardest meal for him, he often has a stomach ache for a good part of the day if he eats much when he first rises. John has always had many problems with dairy and milk still has to be regulated. When he was a baby, he wasn't lactose intolerant, we were told his body couldn't break down the proteins. We finally figured out he could have 2 slices of cheese or 2 yogurts a day - if spread out - and if he only ate dairy 3 days out of the week - but even then, we couldn't mix cheese and yogurt. If his day started out with cheese, it ended with cheese. Any other CF children like that?)

I swear, I almost believe the doctor 'forgot' to mention drinking plenty of water on purpose. Should I feel that way? I almost sound bitter or vindictive here, but now that John tested at 14, they won't help me at all.

Anxious AND Frustrated Now

By the way, I really appreciate the medical help AND the support you have shown me.
 
I

IG

Guest
Honestly you don't sound bitter or vindictive. If it's in the best interest for your child go for it. Given the fact that the machine malfunctioned 3 times and the doctor is... not quite cooperative. Don't worry about being pushy, what if in the end your son does have CF, your doctor could have prevented him from being diagnosed sooner. Demand that he be tested at a CF center. Honestly if possible just bypass your doctor altogether and get in touch with a CF clinic and explain your problem. I'm sure they'll be helpful and do sweat test and put your fears at ease. Also I know that I've heard um... Ambry mentioned before? If possible you can have them test for mutations. This is your sons health. Your doctor should be behind you, but if that's not the case maybe, given all of his symptoms, you should change doctors even if your son doesn't have CF. I wish you the best of luck.
 
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rose4cale

New member
Hi Anxious Mom. The lab tech that did my son's test at the regular hospital also appeared to know what she was doing and even mentioned that she rarely sees a positive test and has been doing the tests for a couple of years. I had faith in her and our Dr. They even put my son under to biopsy his instestines to check for other diseases such as celiac sprue which is the intolerance for gluten, but anyway I didn't know the difference between a regular hospital doing the test and an accredited CF center. After they told me he was fine, I just felt so uneasy and absolutely knew my in heart there was something wrong. Even my husband started to think I was overreacting, but a Mom's instinct is so powerful. After we got to the CF center they suspected CF right away and after the unsuccessful sweat tests, we did the blood test. I just have no faith in the sweat test. 14 is a low number, but I think you're also doubting the results. If so, please look into it further with a CF center.

After we got my son on proper meds, his eyes brightened up and his growth was incredible. Going from off the charts small to the 50th percentile in weight in just a year. Now if his legs would just grow...<img src="i/expressions/face-icon-small-happy.gif" border="0">

I wish you the best! Keep us posted.
 
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anonymous

New member
Anxious Mom, don't feel like you are being pushy! You are a concerned mom, and I can't imagine the doctor would feel any differently if this was her own child. Julie was right about trusting your instincts. Hopefully you're wrong, but if you are right, it's something you want (and deserve) to know sooner rather than later.

I would definitely look into genetic testing since the sweat test is not 100% accurate. Our daughter, who is due in September, has been diagnosed with CF via a CVS. However, because of the mutations she carries, the doctor told us that the sweat test will likely come back negative or borderline. And this is a confirmed genetic diagnosis! Insist on testing, and I would look for a pediatrician that will take your concerns seriously.

Let us know what happens ...

-- Jenica
 
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anonymous

New member
Maybe this question has been answered here, but is there a mimimum age for a sweat test to be administered? (i.e. 1 month old, 3 months old, etc)? I have a friend that thinks their child has CF and I guess I wonder what they're waiting for....why can't they just test the baby, who is 1 month old?
 
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Emily65Roses

New member
When I was born, a child had to be 6 months old before they could be sweat tested. So even though the docs pretty much knew I had CF at 2 days old (meconium ileus), they couldn't get an official diagnosis until I was 6 months old. Low and behold, my salt number was way higher than normal.
Now, however, I don't think there is an age minimum. Someone correct me if I'm wrong, but I think now they can sweat test any child at any age.
 
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anonymous

New member
If i remember right Kait was sweat tested at birth, she also had meconium illeus but i do not remember going back in to be sweat tested, but of course they did the DNA and it was obviously positive.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
keep on trying ur doctor should test ur son 4 cf anyway my daughter was diagnosed at 6 mnths after doctors told me there was nothing wrong.
 
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anonymous

New member
keep on trying ur doctor should test ur son 4 cf anyway my daughter was diagnosed at 6 mnths after doctors told me there was nothing wrong.
 
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anonymous

New member
My daughter was five weeks old when she had two positive sweat tests. My son was ten days old when he had a positive sweat test. I know that there can be a problem getting enough sweat from an infant, but not for my children.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
 
A

anonymous

New member
That post is kind of out of left field but that is incorrect. They can be cleared up with ANY sort of antibiotic-pill, nebulized or IV if necessary. You do not have to have IV medications to clear up infections, although they do become necessary sometimes.

Julie (wife to Mark 24 w/CF)
 
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