Not enough sweat.

[kadensmom]

Kaden's sweat test was today. The technician said there was not enough sweat. We have to repeat it on Tuesday. I had a long sleeved shirt on him plus a jacket, and had him play in the sun outside. Any other suggestions? Wouldn't it just be easier to blood test my husband and I to see if we are even carriers? Or is that a more difficult process? It seems simpler to me. From reading other people's posts it sure seems like this happens alot. Its so hard not knowing and I know alot of people here have had to wait alot longer to find out, so I won't whine!
Kaden Noa's Mommy

 

[anonymous]

My 3 kids were tested as well forthe sweat test. I wore long sleeve shirts, a coat and my sister and I made then run laps, fun drills and we never let them stop. It was a long 20-30 mins, but it was worth it! They were soaked through and through. My one daughter is fine, my other daughter is a carrier, and my son has CF. It has been a very long process. Even though they had alot of sweat, my one daughter was tested twice and my son three times ( inconclusive numbers ). Then they were all sent for blood test which took about 7 weeks for the results to come back, my son was diagnosed in August and is going to be hospitalizeed the week after next for IV antibiotics and a they are going to go down with a scope to take pictures and do a biopsy. I wish you all the luck and I hope that your childs test comes back negative.
Karen

 

[anonymous]

There are several mutations, but I would think that they could do a blood test on Kaden. Maybe the blood test is very expensive so they only use it to confirm a positive sweat test. How did they go about collecting the sweat? With my daughter they rubbed a chemical (derived from cactus) on her forearm before putting the paper on to collect the sweat. She was also hooked up to some kind of electrods on her wrist and upperarm to help stimulate the sweating, and then we waited for 30 minutes before the paper was removed. I was kind of shocked when they did all this, I was kind of expecting her to play around enough to work up a sweat and then they would just wipe some sweat off of her forehead. I wasn't expecting to see my daughter hooked up to electronics and receiving a shock through her arm! It was painless though.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Sweat test is quickest though. You'll get results in 1-2 at most, possibly the same day vs. 3-8 weeks of waiting on the genetic test. If you do the blood test, do it through quest diagnostics or ambry and do it on Kaden, not you and your husband. For the sweat test, have him wear long sleeves, a sweatshirt and a jacket. Spend the whole waiting time walking, running, climbing stairs, etc, so he and you are thoroughly exhausted. That's how we got enough sweat on my ds 4 yrs ago (3 at the time). It was just barely enough.

 

[reillybug]

I would definately push for the blood test for Kaden. My daughter never did a sweat test - there was a 3 month waiting (?) list. So, we cut to the chase and did the blood test. Results were back in 1 week. She has double Delta F508 mutation.
Good luck!

 

[anonymous]

My daughter also did the electrode method at just three months of age. She scored an 88 and 93. I thought this was how all sweat testing was done. I never heard of children having to run around and get sweaty. Are these tests done at accreditted CF centers?

Maria (Sami's mom)

 

[julie]

Kadensmom,

The reason why people/doctors seem to veer towards the sweat test first is because the blood tests are very expensive. Many insurance companies require a preauthorization for the blood tests.

But to answer your question, YES the blood test is probably a better and easier and possibly (said with caution) a more accurate way to go.

You and your husband have not been diagnosed as carriers of a mutation? Are they doing Kaden's test because of symptoms?

 

[lflatford]

My daughter also had the electrode sweat test. That way she didn't have to produce any sweat naturally. THey just put this little velcro sleeve with electrodes on her arm. The electrodes make the arm muscle contract over a 10 minute time period and therefore you end up with sweat that can be collected. If I were you I would ask for this method if you could.

 

[anonymous]

Maria,
Yes, they did the electrode testing, and yes it is an accredited CF center (satellite clinic of Riley's Children, Indianapolis). The problem is that some children just do not produce enough sweat even with the electrical stimulation. Ds was 3 when he was tested. It was Dec so he was dressed warmly anyway but I left his big jacket on and we walked up and down stairs, all over the hospital, visited my sister (she works at the hospital), had him run, etc, and he barely produced enough sweat. When his little sister was tested (2 at the time), she had no problem producing enough sweat (like 3 times as much as ds) and she wasn't even dressed as warmly. I guess it just depends on the kid.

Also, to the OP, the genetic testing we had took 2-3 weeks to come back. How long it takes depends on the lab. Our genetic test was through genzyme which only tests for 86 mutations I think (accounts for 90% of cf genes in caucasians) but it didn't find any genes on ds. Ambry and Quest test for rare mutations and my understanding is that both of those take much longer to come back.

(anon who posted at 8:40 pm Nov 3)
M

 

[kadensmom]

I had a feeling that the blood tests are more expensive and that's why they're doing the sweat test first. I just wish I already knew if my husband and I are carriers. If I already knew we weren't, then there'd be no worries. They're testing Kaden only because of symptoms (20 lbs at age 2, consistant cough). He did have the electroid (sp?) thing attached to his arm first. (And, threw a lovely, two year old ,temper tamtrum during it!) I'll add more layers of clothing on him for the next test. Its hard to get him to run around enough to work up a sweat. Maybe I'll bring a ball with me to chase around. I guess if it doesn't work out again the next time, I'll really push for the blood test on Kaden. Thanks for all the advice!
Kaden's Mom

 

[julie]

Honestly, I would push for the blood test through Quest diagnostics. I wouldn't even bother with trying another sweat test at this point because you are likely to end up with the same "not enough sweat" problem. Good luck and keep us posted!

 

[1princess]

Sorry to hear Kaden's sweat test didn't work this time. My daugher was hooked to little electrode things for about 5 minutes or so and then they put this little dial thing on her and wrapped her arm up and we were off to run around for 30-40 minutes. She barely had enough sweat at the end too, but he kept pressing on her arm and got enough to do the test. I would give the test one more try and then pursue the blood test on Kaden. Just the thought of these little guys having to have blood taken makes me so sad - even though I know it is the best way to get accurate results. I just couldn't put my daughter through it if I didn't have to. Good luck to you.

 

[kadensmom]

Not enough sweat again. The hospital only does the procedure twice. So, at this point, I have no idea what they will do next. If anything. I'm so frustrated. If Kaiser doesn't do the sweat tests anymore, I doubt they'll cover the blood work that our pediatrician says is very expensive. Our endocrinologist feels that Kaden probably does have CF based on his symptoms. Our pediatrician thinks he doesn't. I have no clue, and just want an answer one way or the other. My fear is that they're just going to say "oh well, we tried." and send us on our merry way, and we won't find out until its too late. Thanks for letting me vent.

Tammi
Mom to Kaden (age two-CF? Maybe we'll never know!)

 

[julie]

Not to insult your pedi. but many of them have been grossly incorrect at the expense of a childs health simply because they don't understand CF, they are too prideful to admit it isn't their array of knowledge... and so on.

Here's where I would start, since your endo. seems to think your son might have classic CF symptoms, request that they order a blood test via quest diagnostics. Quest Diagnostics is a well known, well respected, long standing laboratory and is very well known to many doctors and insurance companies. Here are some links to the CF test there, print print print and give to your doctor (contrary to popular belief, doctors don't know everything and are FREQUENTLY wrong!)<a target=new class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cfcomplete/cfcomplete.html">http://www.questdiagnostics.com/hcp/topics/cfcomplete/cfcomplete.html</a>,
<a target=new class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cf/cf.html">http://www.questdiagnostics.com/hcp/topics/cf/cf.html</a>,

If the insurance company denies the testing, appeal it, if they deny it again, appeal it again. People are still so ignorant about CF, even in the medical field. You have to fight, believe me, you have to fight.

 

[anonymous]

Tammi

We have Kaiser also. Our primary Dr. sent us to a pediatric pulmonary specialists. It was him that first mentioned CF. After seeing him our daughter was quickly scheduled for many tests. They will probably let you have a blood test that tests for the most common mutation. Then if it comes back positive, you will get more detailed blood testing done at the CF clinic. I know my husband put in a phone call to the head of Pediatrics and from then on all of our testing was scheduled quickly!

 

[anonymous]

Tammi.
I would demand to have a definitive diagnosis of CF if that's the case. Just saying they can't get enough sweat is unacceptable. CF is a serious and life-threatening genetic disease and you and your child deserve an answer. This makes me so angry. As a parent of a little girl who does have CF , I have learned you have to be assertive and not stop til you get answers. You can contact the Cystic Fibrosis Foundation on their website at www.cff.org and find an accredited CF center near you and find out what you need to do like the genetic bloodwork to find out in fact if your child has CF or not.

Rebecca(mom to Sammy 7 no CF and Maggie almost 3 with CF)

 

[kadensmom]

Thanks for all the recomendations. Julie, thanks for the info, I went online and downloaded from the diagnostic site. I plan to show info to our pediatrician. I have put in a call for the ped. and made an appointment to see her for next week. Believe me, I will not let this go. There have got to be other options besides the sweat test, or, they will just have to make it avalible to us again, despite thier "we only do the test twice" rule. I know with Kaiser, you have to push, I'm glad to know other people have gotten the testing they needed through Kaiser. Thanks!
Tammi
Kaden's mom

 

[anonymous]

Tammi,
If you find out that he does have CF, I would like to let you know that the Kaiser CF team is great! I know about the struggle getting care when you are "healthy" (my daughter was 8 before being diagnosed!), but once you get to the CF center they are very helpful.

 

[daelwill]

Tammi,

Are they using the gauze discs to collect the sweat or the little plastic disc with the tubing inside? The gauze discs will collect the smallest of samples where the other one needs much more sweat in order for it to travel up the tubing... both use the chloride solution to stimulate the sweat glands and the electrodes but the gauze really is more accurate.

There is also a nasal type test NPD or NDP something where they do some sort of test in the nasal passage... fairly non-invasive and similar to the sweat test... many who are borderline or have negative sweats -very possible with CF as well- so the gold standard of the sweat test is always followed up by the DNA testing anyway.

Another thing would be to get a culture of his sinuses or lung (usually done with a throat swab at that age...) if he is growing any bacteria common to CF patients it would give good leverage to fight for more testing.

Very expensive for DNA testing???? Last I heard, Ambry only charges about $450 for the test- how much does a CT scan or full labs cost- way more than that. I know that is alot of money but my son's PFTs cost more than that each time we go (which is at least 4 times a year)...

One reason I do not like HMO plans- but I'll try not to get into that one. Keep fighting for a diagnosis or for definite answers that it is not CF.

Daelynn
mom to 3 boys (17, 14 &10) youngest wcf

 

[kadensmom]

Daelynn,
They're using the little disc with the plastic tubing in it. I didn't know there was a gauze one, that sure sounds alot easier. Just another thing to ask about. I'll guess we'll get more info next week. I'm with ya on the hmo thing!
Tammi