Croup and CF

[anonymous]

Has anyone had croup that has caused other problems or gone bad on them? Avery developed Croup yesterday and I am worried about the effects it will have on her CF. What have been your experiences with it? Anything would help.
Thanks.

Lynsey -mom to Avery 2yrs w/CF and Rhett 1yr no CF

 

[anonymous]

Not croup, but DS got bronchitis. We contacted his doctor and he suggested increasing CPT to 4 times a day or increase the amount of time. Basically "beat the cough and stuff right out of him" is what we were told. I think the important thing is to keep things moving, so stuff doesn't sit there and cause an infection or damage.

When DS has gotten upper respiratory infections in the past we've also increased the number of times he bathes -- we get the bathroom all steamy from our showers, then give him a bath and let him play in the tub for awhile. If it's night time, we give him CPT shortly afterwards.

Is croup the one where they suggest fresh, cold outdoor air or is that something else?

Liza

 

[lflatford]

Croup is when they bark like seals. And yes they suggest a burst of fresh cold air, because it decreases the inflammation of the throat that causes croup. So far all they have given Avery is prednisolone, which is a an anti-flammatory drug...I think. We have also increased her pat-pat (what she calls her vest) treatments.

 

[lflatford]

What I meant was that their cough sounds like a seal barking.... oops!

The worst thing is that my daughter caught croup from my son who over the holidays had stomach virus, then an ear infection, then croup and last bronchiolitis (infection of the smaller lobes only). So I am surprised she held off getting sick until now.

 

[anonymous]

One word of caution, if your child has asthma, too, you may not be able to use cold night air. My ds is asthmatic and he cannot tolerate the cold night air. When he gets croup we use the steamy shower, do xopenex in the neb (because it usually affects the asthma, too), and sometimes just saline in the neb. Prednisolone is a systemic corticosteroid for the inflammation and is the main treatment for croup if it's severe enough to warrant the use of steroids. If it gets bad enough, you can go to the ER and get steroid shots and breathing treatments with epinephrine.

 

[lflatford]

Avery does not have asthma that I know of, but thanks for the warning.

 

[anonymous]

I'm just wondering about the use of prednisone for a small child. Only because a couple of years ago when DS was just over a year old, we had to go to urgent care because he had a rash and was wheezing. Daycare was concerned he had chickenpox 'cuz that was going around. Anyway he was given zyrtec for the rash, as well as a liquid form of prednisone. I was a little concerned with the latter, 'cuz I thought it was rather a strong medication for a simple rash.

So I called his CF doctor in the City and was told absolutely no in terms of the prednisone because DS was so little and it could cause his blood sugar levels to rise. He said later on in life it may prove to be a useful medication but under the circumstances to disregard that prescription.

 

[anonymous]

Both of my children each have been on prednisone once when they were babies. Their cf doctor put them on it for a few days when they were having trouble getting over a cold. I think it helps reduce inflammation. It did help my kids get over their colds. It is a rather strong drug and I know through the paper work I recieved from the pharmacy that there can be a number of side effects including rise in blood sugars. I think at least for cf children, it is best that is not used for simple things like a rash since they might need to be on it more as they get older.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[fourkidsmom]

Brady has had episodes with croup several times, he will wake in the middle of the night and cough till he can't breath, he has had his lips go blue and his chest caves in to where he is really struggling to breath. We have had to take him to the emergency room 3 times and every time they say croup. He can be just fine all day long and gets this at night. He has done it a couple of other times and we turn on the hot shower and let him sit with the door shut and you can also take him outside in the cool air. They also gave us a prescription called Racepinephrine that he inhales and it does the trick. It has made it to where we did not have to go to the emergency room. Hope that info helps you.

Angie
Step-Mom to Brittany 13 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome 9q deletion q21.2 q22.1

 

[Caleblove0802]

Caleb has caught the RSV bug and the doctors thought that it may have been croup. He also has bronchiolitis at the same time. He was also diagnosed asthmatic a week before he caught RSV/bronchilotis. So he is currently on DNAse and albuterol. As well as CPT. The doctors strongly encourage us to do CPT at least 3 times per day...but they have also said that we can't do to much...like Liza said...just pound it out of them and move it around. Hope Avery feels better soon.

Melissa
Caleb 5 mos w/cf

 

[ajd05cjd02ald]

Clay has also come down with RSV too the primary doc said it sounded like croup, but he tested positive with RSV.
Does this happen to cf children a lot I want to know what I'm facing with , because my daughter was just diagnose this past APRIL and at the time I just found out I was 6 weeks pregnant with Clay so this is all new to me and I feel overwelmed with all of their treatment, I'm so glad I found this website and forum where other parents can relate to me. They have baby Clay on albuteral, a steriod for his lungs during the process of this virus he has. It worries me to have him on so many different things, because I don't know what makes him out of it or how he feels by him being so young he can not tell me.

 

[anonymous]

I had croup as a child and I have CF. I ended up in the hospital but recovered.

 

[izemmom]

Lynsey - I shudder to think of what the holidays must have been like with two kiddos not feeling well. Uuugh. Hope they're both on the mend and that you didn't get any of it! stay well!

Tami

Isabelle 3 - no cf
Emily 9 weeks w/cf

 

[lflatford]

Tami-
It's funny but I didn't even think about the amount of illness I had to deal with while it was happening. But now when I look back I have no clue how I handled it so well!

For others-
Avery was on prednisolone not prednisone! Two very different drugs!

 

[anonymous]

Actually, prednisolone is just the pediatric version of prednisone. Both are systemic corticosteroids used to treat inflammation (lung inflammation in an asthma flare, inflammation in the trachea in croup, etc.), suppress the immune system (for transplants), and suppress allergic reactions and prevent rebound reactions (as in anaphylaxis.) There are other uses but those are the main ones. Some systemic corticosteroids are more potent than others, but they are all the same class of drugs. In this case, prednisolone is less potent than prednisone but they are both still potent drugs. My children have used them for lung inflammation, croup, and anaphylaxis. Drs don't like to rx them to children under one if there's not clearly the need, but they are still used frequently for children that young. My dd used it the first time at 9 months for a bad asthmatic flare.

 

[anonymous]

I have CF and had croup way longer than I think I was suppose to...until I was like 14...about once a year...several trips to the hospital over the years...always loved it when the sun came up and everything just went away...that is still a mystery to me how that works! But for me I would cough and cough until my wind pipe would close up...good luck..wasn't a pleasant experience for me.