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New to all of this, some ?s Sweat Test to be done

shakysmom

New member
Hello,

I have a 26 month old dd who has been having some health issues since around her 2nd bday. I would like to give a bit of a background and some symptoms and ask some questions. Any insight is greatly appreciated. TIA She had an ear infection/sinus infection late Dec. She was put on Zithromax. It did nothing for her. She then ran a low grade temp on and off and started to get really irritable and tired. We took her back in and they said she had another sinus infection - was placed on Omnicef for 10 days. Nothing - still low grade temp, swollen lymph nodes, very heavy mouth breathing because her nose is so "plugged" but no runny nose. Acting very very tired and asking to take naps and sleeping for long periods of time. Then she went from a very heavy appetite to now eating just about nothing at all. After the Omnicef she was placed on Zithromax again and then on to Bactrim for 10 days. She got another ear infection while on these meds. Still all these sypmtoms and they did a CBC on her last week to rule out cancers. Her wbc were a bit low but all was "normal" Mono test came back negative today as well. I took her to another pediatrician today and she did alot more thorough exam and ?s. I told her about dd's bm's - how she goes several times a day and they are "big" That is when she started asking different things. I told her we thought her belly looked more puffy lately and that she wasn't eating. She actually lost just over a pound this past week. She weighed 23lbs today. She put in a request for a Sweat Test sometime this week, they are calling with the appointment in the morning. Do any of these symptoms sound familiar to any of you??? When I was pg with her would any of the blood tests they did on me show anything for the CF gene?? Anything - I am very worried - anything will help me. Thanks so much. Sorry this is long.
 

anonymous

New member
None of the blood tests done while you were pregnant would have showed that your baby had CF. Only genetic testing on the fetus would have shown that (amnio) and if the CF test was specifically requested at that time.

WBC counts are usually high in CFers because they are continually trying to fight off infection and therefore the WBC's are more active and predominant, but that wouldn't rule anything out just because your daughters are low (daughter, right?).

I think that the doctor ordering teh sweat test was a very good place to start. Just a few words of advice, if the results are borderline (they usually say 40-60 is borderline positive and 60+ is positive, although at my hospital, if the test is 30 or above we order genetic testing as well), or you are not satisified with the sweat test results (because there are false negatives and false positives) I would push for a genetic testing. Most hospitals and clinics only test for 25-100 of the most common CF mutations. There is a company called ambry that tests for many more mutations as over 1000 known mutations currently exist.

Failure to thrive; runny, greasy, smelly and frequent bowel movements; weight loss and or loss of appetite, distended stomach, fatigue; recurrent sinus infections/lung infections, sinus congestion; (things that you listed) can all be signs and symptoms of CF, but I don't think you should get yourself all worked up (I know easier said than done) until you have the sweat test results done and/or genetic testing.

If you have any more questions, this is the place to come. When you do get the sweat test results back, please do let us know.


Julie (wife to Mark 24 w/CF and RN)
 

shakysmom

New member
Thanks so much for your reply. I am very curious as to whether or not my husband and I carry the gene.

Her wbc count was 5.1 - very borderline low so they were not concerned. I will for sure keep you all posted. Whether or not it is positive I have a new found respect for parents with children with any type of special needs. Thanks and any more advice is welcome. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

anonymous

New member
If you think it is worthwhile, you and your husband should get tested, especially if the insurance company will cover it. But, in the same sense, now that you are already scheduled for a sweat test, you might want to see what the results of that are.

Keep us posted, and if you have questions or need someone to talk to feel free to email me at well at division902@hotmail.com

Julie (wife to 24 w/CF and RN)
 

shakysmom

New member
Thank you for your replies. We had the test today and the result was well within normal range. Like 22 or 23. Thanks so much again. Yet I am still searching for an answer to what is making my daughter sick for so long. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Blessings to you all.
 
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