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susied123
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/14/2017 5:52 AM (GMT -7)   
Hello,
My daughter is 9 years old. When she was born she experienced "respiratory distress" and stayed in the NICU for three days until her breathing normalized. She had a very healthy toddlerhood through age 7...when she started having terrible year round allergies (not food).
She has been on every allergy medication and every type of nasal spray. Nothing has worked for her. Allergist referred us to an ENT who examined her and was VERY surprised to see nasal polyps which were moderate to severe in size.
He recommended we get a sweat test for CF b/c polyps are extremely rare in children under the age of 10 (unless you are a child with CF). We have appointment for May 23 at John Hopkins.

She snores, is constantly dizzy, complains of headaches everyday, she can't breathe, breathes out of her mouth, etc. Her stools are very dense and look like a bunch of small balls clumped together. She mentions that her arms feel week.
She was especially sick last so I took her to her general doctor who heard wheezing in her right lung and gave her an inhaler.
I was very skeptical about a possible CF diagnosis but then I read about "atypical CF".
Any thoughts are appreciated!
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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15326
   Posted 5/16/2017 1:11 PM (GMT -7)   
Hi Susie & welcome to Healing Well. I am sorry that you have not had any responses to your post here. This forum tends to run very slow.

I hope that when your daughter is seen at John Hopkins you will get a definitive answer one way or the other about your daughter. At least by going there with her you are going to a great facility.

I have very limited knowledge about CF. I know there is a family history & both parents must have the gene. I feel sure John Hopkins will also do genetic testing on your daughter.

In the meantime, while you search on the net about CF, please look at reputable sites such as teaching hospital & universities. There is so much garbage on the internet that is inaccurate. about all it is good for scaring or causing stress that is not needed. Make yourself a list of questions to ask.

Good luck with the upcoming appt.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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