Need info/experience re kids on inhalled steroids

[Aboveallislove]

Just got back from quarterly CF appointment and doctor wants to start DS on inhalled steroids to address his cough, which comes and goes, and seems to be triggered by running. She wants to try for 3 months to see if it helps. Said the only sideeffect of real concern given low dose was thrush, but to rinse mouth after and since using spacer unlikely. She said an asthama component is often presented with CFer. She also said that oral steroids use to cause additinal bacteria colonizations but no evidence that inhalled do. I'm hoping to get some feedback on your experiences. Our son is 3.5. Specifically wondering the following, but would like any input you think would be helpful! Thanks in advance:
1) When/why did your child start?
2) What inhalled steroid and what dosage?
3) Any sideeffects that you noticed?
4) Did it change cough or anything else??

Thanks!!
-Love

 

[Justinsmama]

Hi,

My 8 year old son, Justin, started with Flovent at 6. He quickly moved to Symbicort 80 and then 160. We now use the Symbicort 80 as maintenance and 160 as soon as he has a cold or flair. We were told that if he has to stay on the 160 long-term, it could cause his height to be 1/2 inch shorter. This is something we are willing to deal with. There is some dispute as to whether or not Justin has an asthma component, but his numbers are much higher (especially 25/75) when he is on it. I don't want to fix it if it is working and don't really care if he does or does not have asthma. I have not noticed any side effects (althogh we do on xopenex - can't sleep). The Symbicort did help his ability to breath. He has no cough (other than during vest treatment) as baseline. I hope this helps. We are new to this too, just being diagnosed last year (although we have known he is pancreatic insufficent for several years now).

Josette

 

[Aboveallislove]

Thank you so much! Two quick follow-ups:
1) Why the change from Flovent to Symicort?
2) And did he have a baseline cough before?

And I guess one third: Is your son on Kalydeco? Whenever I hear a late diagnosis, I think immediately that there is likely a mutation that could benefit.

 

[albino15]

I was on Advair for about four years or so. When I started going to an adult clinic the doc didn't want me to take it anymore, he just said he didn't want me on steroids or something like that (I wasn't being very compliant with it anymore anyway) he did later prescribe albuterol as needed, which I had taken before.

I've been told I have asthma but I really don't notice it too much.

I remember being on a few different inhalers throughout my childhood, don't remember having any side effects. I am kinda short but don't know if the steroids are to blame.

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[CFSanDiego]

HI there. My daughter had a 4 week productive cough over the summer that brought her fev1 down from 116% to 88%. I freaked because they weren't climbing back up fast enough. Anyway, after 1 month on Flovent, fev1 went uP to 122%. Small airways by the way went from 85% (which has been her baseline, was as low as 52% during that cold) to 119%. We just went. Ack in yesterday without havIng been on Flovent for a few weeks and down to 114% and again the 85%. It was obviously reducing some inflammation and I need to reconsider putting her back on...

 

[Rebjane]

Arg, I just typed something up and it got lost Anyway, my daughter has been on Pulmicort nebs 2x a day since she was 2 1/2 years old after she had an exacerbation. It helped her after she started it her cough did go away; I think it takes about 2 weeks before it takes full effect. My daughter is now almost 10.

For side effects; have not noted much. No thrush. Except when she was on TOBI and multiple anti's when she was very sick once.

I worry about long term side effects of steroids; but her body seems to need them. She also on Nasonex and just finished a prednisone burst. Inflammation is a component of CF and it is an issue for my daughter.

Her growth has been great. She weighs 92 pounds; can't remember her height; but she is tall...Similar to my size when I was 10.