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Thank you all. She's already handling it better!

Yes! I try to get her to stop puffing her cheeks and she can't. It's hard watching her try. We'll give her lessons a good try this summer and see if her teacher thinks it's an instrument she will have success with. If not, percussion is an option. :)

Thank you for your responses. I hope kenna2 is right and she's just figuring it out. LL, looking forward to you you find out from your inquiry to your friend. My daughter's pulm has thought of putting her on a treadmill since she never seems to have endurance...tires much more quickly than...

Hi. My undiagnosed daughter is starting to play the clarinet. She is having a very hard time making full, long sounds. She practically shakes as she tries to make sounds. I don't remember it being that hard to make sounds when I started playing it many years ago. She can only hold a note for...

My daughter used to have terrible bloody noses. We'd wake up to what looked like a crime scene in her room.....how could it splatter on her walls??? Anyway, we use saline nasal spray and either bacitrcin or vaseline in her nostril 2x/day. It helps a lot. We did end up having one nostril...

Interesting. Thank you. I never heard back from her nurse so I'll check with her again.

Peeling fingernail Anyone know what causes fingernails to peel/fray at the tips? It seems like the top layer slowly chips off or something. I've noticed this on and off for as long as I can remember with my 9 yr old daughter.

My heart is with your family as you endure your son's 1st hospitalization. I hope it goes smoothly with no complications.

She's on 3 tsp miralax/day. Stomach seemed worse when dose was higher. She has had severe constipation 3 times in past couple yrs. ER visits and almost hospitalized b/c would throw up the drinks with high amts of miralax. She sits so long b/c her stomach hurts and she feels like she needs to...

I'm sorry for what you're going through. You must have many emotions.....and to have him coughing blood for the 1st time shortly after his diagnosis. Not easing you in at all. Thinking of you.

My 9 yr old doesn't have a diagnosis but is being treated similarly to kids with CF due to her symptoms (passed sweat test and nothing found through genetic testing). Her lungs have been great this yr and only one bad sinus infection. Her issue has been stomachaches after most meals. Often...

I wish you had answers. We've been in a similar boat with my 9 yr old daughter for over 2 years. We'really still looking for answers but basically treating her symptoms. Hang in there.

Thanks for your suggestion. I have started a letter and I also know that my daughter's psychologist and special needs nurse are happy to be at the next meeting.....and they will call or have a meeting before then.

While it is true my 9 yr has no diagnosis and has had a good year with her health, she follows similar treatments as kids with CF. She also sees psychology frequently for anxiety and depression. She is absent from school for many appts....pulm, ent, GI, genetics, special needs, ortho (new...

I agree 100% and I love your analogy. ;) We weren't seeing our regular pulmonologist the days they didn't do PFTs b/c she was on leave. They worked DD in b/c she was really sick. I didn't push the tests b/c she had vomited earlier (she always does with pneumonia).

Thanks for the acid reflux idea. She's actually had a scope done by GI and they found no signs of acid reflux. I was shocked b/c with her symptoms, I really thought she had it. I'll mention it again though.

The last couple of times she was really sick, they didn't do breathing tests b/c they said they knew they'd be low. Not nearly as low as your child's though, i'm sure. They are pretty much following cf protocol but with her test results, her pulm really doesn't believe she has cf. She's said...

The mutation found was related to pcd but "unknown significance". She just had lung xray and it was clear! 1st clear xray since her health became rough over 2 yes ago. Going to ent tomorrow. I'm guessing he'll get a sinus culture. Pancreatic sufficient. History of chronic constipation...

Yes, she had the sweat test at an accredited cf center around 2 years ago. Her sweat test was very low....normal.

I hope you don't mind my posting here and reading other posts without a diagnosis. My now 9 yr old daughter still has no diagnosis. We thought we were in the clear and she just had a rough couple of years after having no respiratory infections and very little cough since April and long...