It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cystic Fibrosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-28-2009, 01:39 PM   #1
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
My son just had his second sweat test...

and for the second time he produced absolutely no sweat at all .... im wondering if this is common

 
Old 10-29-2009, 08:07 AM   #2
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: My son just had his second sweat test...

Quote:
Originally Posted by Mattysmomma View Post
and for the second time he produced absolutely no sweat at all .... im wondering if this is common
Is he an infant? It's difficult to get teeny tiny babies to sweat. When DS was 3 weeks old he had his test, but it came back as normal (32). We suspect they just didn't get an adequate sample because now that he's older he really sweats out a LOT of salt. IMO Genetic blood testing is the most accurate determination of CF and not just testing for most common mutations but amplified such as ambry or qwest which test for over 1500.

 
Sponsors Lightbulb
   
Old 10-29-2009, 11:18 AM   #3
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Quote:
Originally Posted by Ratatosk View Post
Is he an infant? It's difficult to get teeny tiny babies to sweat. When DS was 3 weeks old he had his test, but it came back as normal (32). We suspect they just didn't get an adequate sample because now that he's older he really sweats out a LOT of salt. IMO Genetic blood testing is the most accurate determination of CF and not just testing for most common mutations but amplified such as ambry or qwest which test for over 1500.
He is actually going to be two in two weeks... in hindsight he just never got sweaty no matter how much bulky clothing he has on. In fact at night he kicks off his blankets and gets upset in the deepest sleep when he is covered. He has been tested for celiac anemia ( which he has and is responding to the supplements albiet very slowly) thyroid issues and then a rule out for cf . The first test about 2 weeks ago he did not sweat at all and they tried the test on each arm so yesterday he was retested and after again no sweating. The next step is genetic testing if its warranted however he doesnt exhibit respiratory issues save for one lung infection at a year of age after nearly 3 months of coughing. Slow growth diagnosed with ftt at around 15 months of age darn vile smelling stools that i have now noticed look like they have been painted with glaze ... not pretty at all lol .... the blood testing for celiac showed no antibodies but he seems to be leaning that way more than anything . I just need peace of mind that it isnt cf and if he just doesnt sweat at all then im worried about that too ... its honestly driving me insane slowly

 
Old 10-29-2009, 12:30 PM   #4
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: My son just had his second sweat test...

DS has mainly digestive issues. We struggle to keep him at the 50th percentile.

Though he does have some sinus issues -- his nose never runs, the mucus is just too thick and sticky.

Until we got his digestive enzymes (supplements he takes to digest fat and protein) his stools were fluffy like cake frosting when on formula -- sorry TMI, but greenish, greenish yellow, had a sharp smell to them. Sometimes when he doesn't get enough enzymes -- eats more than expected there will be a oil slick in the toilet. Sometimes orangish that looks like the fat from frying hamburger. Greasy, oily, bulky stools can indicate CF.

When you kiss him do your lips taste salty? 'Course if you can't get him to sweat, probably won't. In the summer times DS will have actual salt crystals on his hairline.

 
Old 10-29-2009, 03:38 PM   #5
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Quote:
Originally Posted by Ratatosk View Post
DS has mainly digestive issues. We struggle to keep him at the 50th percentile.

Though he does have some sinus issues -- his nose never runs, the mucus is just too thick and sticky.

Until we got his digestive enzymes (supplements he takes to digest fat and protein) his stools were fluffy like cake frosting when on formula -- sorry TMI, but greenish, greenish yellow, had a sharp smell to them. Sometimes when he doesn't get enough enzymes -- eats more than expected there will be a oil slick in the toilet. Sometimes orangish that looks like the fat from frying hamburger. Greasy, oily, bulky stools can indicate CF.

When you kiss him do your lips taste salty? 'Course if you can't get him to sweat, probably won't. In the summer times DS will have actual salt crystals on his hairline.



He doesnt taste salty but then he doesnt sweat so that might be the reason, when I asked the dr about it yesterday she said being sweatless is not a symptom of cf so I of course asked if that would have an impact on whether he would even be able to taste salty and she didnt seem to think so. All I know is when i change his diaper ( he isnt trained yet this is the month when Im buying him a potty, he is only 32 inches long and the toilet intimidates him ... was waiting till he was tall enough to use a step stool but thats taking a long time hehe) his poop is often gray from the iron or orange and before that mostly green ... often the consistency of mousse or pudding that has been painted with glaze or mucous ( omg this is getting tmi lol) and it varries in smell from vomit( honestly ) to rotten something i cant even explain but wants me to vomit ( honestly) lol they wanted to rule out cf so when the sweat testing failed and i was told he would only be genetially tested based on approval ( mainly because his skin isnt salty and he has crystal clear lungs) I am at a loss

 
Old 10-30-2009, 06:58 AM   #6
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: My son just had his second sweat test...

IMO push for blood testing to rule it out. We had absolutely NO family history. No lung involvement, just digestive.

 
Old 10-30-2009, 08:37 AM   #7
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Quote:
Originally Posted by Ratatosk View Post
IMO push for blood testing to rule it out. We had absolutely NO family history. No lung involvement, just digestive.
I also forgot to mention that I am Native with scottish/french mix and dad is german russian polish was told that because im native i have a less likely chance of being a carrier THEN was told at the respirology lab that no matter if you have any european blood line that you can be a carrier , also that it may be hard to pick up the gene mutation I might be carrying based on my ethnicity and blah blah blah lol ... that is also a strike against me getting him approved for blood testing but i still want to have this testing done. None of my other three kids' poop glistened in the sun his follow up is in early december, we should have the results of his fecal fat fun stuff by then lol. I am also going to push for the celiac testing more intensive testing as the blood tests were normal . I dont buy that one bit

 
Old 10-30-2009, 09:14 AM   #8
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: My son just had his second sweat test...

Have they done a fecal fat test? One of the causes of greasy, shiny poop is malabsorption of fats and proteins. DS has pancreatic insufficiency caused by his CF mutation. I know of some people who had difficulty getting their children tested because of hispanic, african lineage because the majority of people wcf are of northern european ancestory. Dh is German/Norwegian. I'm dutch/scots/irish.

 
Old 10-30-2009, 11:48 AM   #9
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Quote:
Originally Posted by Ratatosk View Post
Have they done a fecal fat test? One of the causes of greasy, shiny poop is malabsorption of fats and proteins. DS has pancreatic insufficiency caused by his CF mutation. I know of some people who had difficulty getting their children tested because of hispanic, african lineage because the majority of people wcf are of northern european ancestory. Dh is German/Norwegian. I'm dutch/scots/irish.
we are just waiting for him to poop lol .... im excited ( not) about the thought of poop in my frigidare LOL... and its not always shiny i noticed ... but then i guess its related to what he eats which is not often more than three bites of anything .... depending on the food offered and sometimes I think its only three or so bites because his tum gets sore . He is usually bloated by bedtime

 
Old 11-23-2009, 12:22 PM   #10
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Well I have an update . His last appointment showed his weight jumped by 11 ounces and his hemoglobin went up three points from 98 to 101 ... normal range starts at 120. Dr is pleased about the fact he is absorbing the iron though he doesnt get much in ... he is not a big fan of the drops so I have also looked into some iron rich recipes for him as a supplement to the drops.

I also had a consultation with the hospital dietician who looked over his food journal and noted he doesnt take in enough food to get the calories which is a big issue in that he should be getting at least 1000 calories per day she estimated that he takes in about 600. This is simply not enough so we brainstormed different ways to fit them in here and there so that if he is still eating the typical three to seven bites we need to fit as many calories in as possible into those small meals. I have invested in 10% cream hummus avacado and even the odd handful of chips now and again. The side effect of this is now I have noticed his bowel movements are a little more frequent though not as smelly... thank the good lord.

He went poop about a week and a bit ago and it was the desired consistency so the sample went to the lab and we will get the results of this test when we go for the follow up in early december which will determine whether the dna testing will be needed . I was told he also no longer has FTT ( YAY) ... He has also shown signs of a growth spurt more width than length as he is still 81 cms... i just bet he has gained a pound or two.

Still finding undigested food in his stool however this is lessening but the mucus is back. Trade one for the other i spose.

Lately I have been dealing medically with his 4 year old brother... he is asthmatic with eczema allergies and frequent skin infections as a result of his eczema ... In the back of my mind I wonder if I should have him tested for CF based on his brother being tested but his issues are mainly lung and skin related ... its funny but his skin infection issue really gets bad in the summer usually slow to heal once it starts... two years ago he needed 5 courses of antibiotics to clear it this time it took two but only because we used zithromax and even then he needed months on antibiotic cream his skin is so thin in places it saddens me. He coughs on a daily basis from fall until mid spring usually the cold air triggers this and he wears a scarf when outside this is mandatory. However the dr says his lungs are clear ... and since I started checking mattys poop I check this ones too and its often very pale but it sinks and there is no oilystuff in the toilet . Eh I just dont know anymore perhaps i am just scaring myself .

Hope everyone is well

 
Old 01-13-2010, 12:55 PM   #11
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...yet another update

Sigh... well he was reassessed and found to still have FTT... he is back in the third percentile overall and lost a pound since the last visit. Despite the high calorie diet he still managed to lose weight. I can attribute this to his activity and the fact he is a kid and kids are active but with the amount of calories i have been feeding him he should be gaining if anything. So the dr ordered the DNA testing YAY ... i will have the results in about 8 weeks. I cant help but wonder if she only did this because of the fact he has developed this chesty wheezy cough in the last couple of weeks but im glad i will finally have an answer even if i have to wait two months for it. ... If he responds well to the prescribed inhalers that will also be a good thing fo matty

On the upside of life i found out i am expecting another baby ... due in August. This makes 5 ... my life is pretty full lol.

 
Old 02-13-2010, 10:35 AM   #12
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Yet another update... After spending a month on the inhalers the wheeze is still there and what i can only describe as a wet or productive cough that still won't go away despite being on a stronger dose than usual. Sigh . It is a little unnerving to hear him wheeze with every single breath he takes but the fact he isnt in distress and seems active leads me to believe he might have an infectin of some time. So this week he is heading back to the clinic for another assessment and im thinking he should get a chest xray, another thing i dont like to see him go through. And lately he goes through 6 - 7 bm diapers in a day which have led to a super red rash ... i cant wait till march

 
Old 02-15-2010, 11:36 AM   #13
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: My son just had his second sweat test...

If he has a wet productive cough -- ask about using a nebulizer, ask if you maybe shouldn't be doing chest physiotherapy to get that stuff up and out. As for the nasty diapers, you can get a triple cream such as criticaid at the pharmacy which helps to protect and dry the area.

 
Old 02-15-2010, 10:34 PM   #14
Junior Member
(female)
 
Join Date: Oct 2009
Posts: 17
Mattysmomma HB User
Re: My son just had his second sweat test...

Interestingly enough about the chest physio ... I have been just doing some clapping on the sides of his ribcage just a few minutes each side ... and he coughs almost everytime on the left side ... and when he gets mad and cries hard he gets wheezy and coughs... I am going to inquire because i really truly think that is what has helped the constant wheeze go away ... he only now gets this way when he is extremely upset or when he has played hard then coughs and it seems to clear up ... sorta like clearing a frog from ones throat ... I am going to ask about nebs tomorrow but i think like usual haha,he will sound crystal clear for her. Is it horrible of me to be thankful he was wheezy when he was inthe office because she wouldnt have bothered to check for it otherwise ? that does sound horrible of me

 
Old 02-16-2010, 08:29 AM   #15
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: My son just had his second sweat test...

DS once had a bronchial type cough. Had a regular CF appointment and didn't cough the entire time. Doctor listened to his lungs which were clear and then JUST as we were finishing up he coughed and the doctor whipped out the prescription pad. Put on cipro for several weeks.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
sweat chloride ?? KLM31506 Cystic Fibrosis 7 01-27-2008 06:46 AM
What does a positive sweat test mean (QSART) twells Neuropathy 2 01-04-2007 12:25 PM
question about sweat test Kian'sMom Cystic Fibrosis 5 10-19-2006 02:36 PM
Sweat test result question... Trishastribe Cystic Fibrosis 8 04-26-2006 09:14 AM
Is it possible for the sweat test to be wrong? ramsey Cystic Fibrosis 6 06-01-2005 07:50 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Albuterol
Augmentin
Flonase
Pulmicort
Prednisone
  Tylenol Ultrase
Xopenex
Zantac
Zithromax




TOP THANKED CONTRIBUTORS



Ratatosk (4), LadyGreenSleeves (1), sherry092 (1), Titchou (1), luckydraw (1), Hope1986 (1), pinstripe1981 (1), vampalicious (1), Jess mom (1)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 08:44 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!