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Cystic Fibrosis
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Posted 6/5/2013 7:16 PM (GMT -8)
Hi, I am new here and would love to get some information from anyone who has answers. My daughter age 7 and newly adopted has had two separate sweat test 2 weeks apart. The first one she had done had readings of right arm 70 and left arm 68. Today she the second test done and the right arm did not provide enough sweat so no score was given, but the left arms score was 59. I am so confused. Everything I read on line says 60 and above positive and 30 to 59 means CF possible. I also read that a positive sweat test result will always be positive and visa-versa. So how did she get one really high positive and one right on the borderline? How can her score be 9 points different? Has anyone else had their child or their own sweat test result numbers change? I am confused.
Posted 6/6/2013 12:31 AM (GMT -8)
Hello,

Firstly what have the hospital said? Those scores are definitely cf scores, have they done a genetics test to confirm and have they started your daughter on any treatments yet? Has she been referred to a Cf specialist?

The scores can vary, no person will be exactly the same, it depends how their bodies feeling and how much sweat is produced and sometimes different people have slightly different techniques which could vary it a bit. I've heard people before with varying sweat test results so you aren't the first. Personally I had a sweat test of 120 when they tested me at age 2 but the first test they did was inconclusive.
A genetic test is the only thing really that can back up any sweat test results found. Also knowing the genes she has is very important as New treatments are targeting only certain mutations of the CF gene, if she is found to have cf.

I know it must be horrible to think your daughter has cf. As you have adopted her you must love her very much. Most important thing is though that if she does have cf, that care is provided asap.

All the best

Gem
Posted 6/6/2013 7:44 AM (GMT -8)
Hi Gem,
She has first appointment with Pulmanolgy at the end of this month. The crazy thing is when I was in China doing her adoption (4/1/2013) I kept telling my oldest daughter (21) Annabelle taste like salt after I kiss her. My daughter kept saying I was crazy. After being home a few weeks my sis in law gave Annabelle a kiss and said eeeww your baby taste salty. I was like, I know, Erica said I was crazy. Then she said you better have her checked out cause there is a genetic condition where the skin taste salty. She could not remember what it was. So I went home and looked up salty tasting skin. Man was I surprised. But a lot of issues she has would make more sence if she does have CF. She has had multiple bouts of pnenonia since she was a baby, she is 7 years old and no lie weighs 9.6 kg and is only 104 cm long, she breathes like she is snoring while awake (nose polup?), she has osteopinia. Because she also has Cerebal Palsey we were focusing more on this being her issues, but maybe not all of this is cp. She had G Tube put in and is getting 800 calories a day and still little weight gain. Dietion says she should be gaining on this calorie
intake. What is crazy about the whole thing is the Asian population is like the least likely population to have this condition! Well, leave it to me to bring home the most special child in China! She will keep my life busy and full of excitment! As far as what doctors are saying, they are not saying much. Just kind of scratching their heads saying this is super rare in the Asian population. I say okay rare, but not impossible. They have ordered genitic testing, but still waiting on okay from insurance. Thanks for your information. Sorry for mis spellings I am using cell phone with no spell check.
Posted 6/6/2013 9:09 AM (GMT -8)
 Yes, salty skin is a big indicator of CF. We sweat 100% more salt than the average person. I find salt actually crystallises on my skin, in summer it is like an exfoliant and maybe why I always have good skin and look young. That's even in British weather which is milder summers!! As kids my mum hated holding our hands if she had a cut on them as the salt from our skin you to sting.

You know I sometimes find myself wondering how this happens. If your child also has Cystic Fibrosis it will be the THIRD child I have heard of with both CF and Cerebral Palsy. That is a crazy coincidence I think. One of my friends also has the two conditions, because of the way he is, you would never tell he had CF as his CP is way more obvious.

I hoep you manage to get your daughters weight issues sorted and that the appointment goes well with the pulmonologist.

Best Wishes

Gem

Posted 6/6/2013 10:39 PM (GMT -8)
Hey Gem,
I was looking over the lab slip the Doctor gave me, maybe this will make sence to you. The test ordered says Cystic Fibrosis Amplified Ambry Including Duplications and Deveation (last word I am guessing on Doctor writing you know) Does this make any sence to you? Do you know how long it takes to get results back on this type of testing?
Thanks
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