pulmozyme/TOBI and bleeding nose

[izemmom]

Something has happened twice now, and I didn't think too much of it until reading Melissa's blog tonight. I'm hoping someone can clue me in a little before I call the dr.

Emily has had a little bit of blood inside her nose during the Albuterol/Pulmo/CPT/Tobi cycle. I think both times were on Pulmo days (We do it only 3 times a week). It's not much, not like a noce bleed, just like a runny nose that happens to be slightly bloody.

Both times happened when she was crying REALLY hard which is not unusual during her treatments.

Melissa's blog (Jazzysmom) mentioned that Pulmo/Tobi were stopped because of hemoptysis (Sp?). Em's not coughing up blood, that I can tell, but could the blood in her nose be related? I thought she may be crying hard enough to break some blood vessels in her nose but now I'm suspicious of the Pulmo/Tobi combo.

I'll definately call the dr on this, but I wanted to know what you guys think.

 

[anonymous]

I think it may be the tobi. I was at our clinic yesterday and asked the Dr. the same question. The Dr said that in some patients the tobi causes irritation in the nose which could lead to nose bleeds. It's not bad just a little blood with the clear drainage that occurs at each treatment. They said it's nothing to be concerned about and that it should clear up in the next week since he finished his treatment cycle.

 

[NoExcuses]

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[izemmom]

no nasal sprays, amy.

I hope she doesn't need them for quite some time. I had a terrible experience with flonase. It was brand new and my doc gave me a sample. I used it as directed but it gave me terrible migraine type headaches, nose bleeds and a god-awful taste/smell in my mouth.

but, no, she just has the pulmo and tobi

 

[NoExcuses]

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[Jane]

Tami,

My boys get nose bleeds when the air is dry. A saline spray in their nose or even a little vaseline just inside the nostril helps too. Make sure to give her lots of water. it could also be from pressure because she is crying so hard.

good luck


Jane

 

[anonymous]

vaseline inside the nose? Isn't that frowned upon for pwcf?

I think steriods can cause nose bleeds too. Maybe add some more vit k.

 

[Darinsmom]

Hi Amy, my name is Laurie and I have an 8 year old son with CF. The question I have is do you cough when you laugh? My son does and was just curicious if you or anyone else you know with CF does. I'm new to the forum and don't know how to post things for everyone to view? Thanks!

 

[Ratatosk]

As far as coughing when laughing or upset, one of our doctors referred to it as cf bronchitis --- that cfers when upset or laughing tend to cough because of narrowing, constriction of the bronchi. I don't notice it too often with DS, to me it sounds more as if he swallowed wrong.