New with questions

[Mama Bean]

Hello, I am new here. I would love to get any advice or insight that anyone may have. To give a little background, 7 weeks ago I adopted a 7 ½ year old little girl from China. Before I adopted her I knew she had the diagnosis of severe Cerebral Palsy, failure to thrive, and a few other issues that go along with this. While in China for two weeks I noticed that when I gave my daughter a kiss my lips tasted like salt. I mentioned it to my oldest daughter (21) who was traveling with me. She said “your weird.” I mentioned it a couple of more times and came to the conclusion that my new daughter was just salty and forgot about it. On Mothers day we went to dinner with some family. My sis in law gave my daughter a kiss and said “wheeeew your daughter taste salty!” I said, “I know I thought the same thing, weird right?” She told me to have her checked out by her doctor because there is a genetic disorder where the skin taste salty. She could not remember the name of it. I went home and goggled salty tasting skin and CF came up over and over again. After a lot of research I found out that the Asian population is the least likely to have this disorder. Leave it to me to bring home the most special kid in China! Anyway, I asked her doctor about it and my daughter had 2 separate sweat chloride test done a couple of weeks apart. The first test came back with one arm at 70 and the other at 68. The second test done a few days ago came back with one arm nothing, not enough sweat gathered and the other arm 59. These were done at the Children’s Hospital which is an accredited CF Center. We will see a pulmonologist at the end of the month. I hope they will tell me weather she has CF or not. If she does have CF a lot of things would make sense. I am not lying my daughter is 7 ½ years old and weighs 21 pounds she is 39 inches in length. She has had multiple incidents of pneumonia and even came home with it. She currently takes in 800 calories a day by a g-tube that was placed once we came home because it was so hard to feed her. The dietitian said she would gain weight, but so far she gains a little only to have 2 or 3 large BM and goes right back to start again. So now that you have a little background I would love to hear from anyone about the following questions.
I thought if your sweat test came back positive/ high it always would. How come hers came back with first test in high range and second in borderline range?
With the information I have given you does it sound like she may have CF? I know no one can diagnose, but just trying to get an opinion. Can’t seem to get an answer from the doctors.
What are some other people’s numbers on sweat test? Is 70 high or a low high?
The doctor ordered labs, the slip says Cystic Fibrosis Amplified Ambray including duplications and deletions ( I think this is what it says anyway, can’t read doctors hand writing) I am waiting on insurance for approval for this testing. Has anyone heard of this testing? What are they looking for and how long do the results take to get in?
Are there any Chinese members on this site with CF? Would really love to hear from you.
Thank you for your time and insight. I look forward to hearing from everyone.

 

[heidikk]

Congratulations on your new daughter. I've often thought I would love to adopt a little girl from China if only we could afford it. I am new to the cf world so I don't have a lot of answers (there are others here who are wonderfully knowledgeable though) I can tell you that my son's sweat test levels were 102 and 106. The little I know so far, your daughter's symptoms sound a lot like cf. Praying you find answers and are able to help her get healthy and strong. - Heidi - mom to Dekorrah, 6mo son with DDF508 cf

 

[Beccamom]

Congratulations on your daughter. A normal sweat test is under 30. 30 to 59 is considered borderline, and 60 and up positive. There are a few reasons for false positive sweat test. The Ambry genetic test that was ordered was the most comprehensive and exactly the right next step. For the failure to thrive has your daughter had a fecal elastase test which is a test on her poop. This is the most common test for pancreatic insufficiency. If she is pancreatic insufficient then enzymes could really help her weight gain. It sounds like you have a pulmonologist appointment soon.

You are doing a great job taking care of your special daughter.

Best wishes

 

[azmaveth]

I am half Chinese with a mild form of CF. I have L467P from my Caucasian mother and a 5T variant from my Chinese father. I was diagnosed at age 34 last year while I was being tested for fertility issues. My wife and I are considering adopting from China as well, since she carries one CF gene and it seems unwise to try to have our own through IVF. Your daughter seems to be about the same size I was at that age. I was always tiny compared to others my age until I was in my 20s and had fully grown. For example, at 10 years old I was 45 pounds and less than 4 feet tall. My parents had me on high calorie diets at various times in my childhood, but nothing ever seemed to work. I didn't reach 100 lbs or 5 feet tall until I was 16. I'm now 5'6" and about 120 lbs. I was able to reach 134 lbs at one point during my time in the Marine Corps, but it all came off pretty quickly when I became less active.