My daughter has been out of the hospital for a couple weeks now. She came out feeling great. Now she has a night time cough and a very low fever. My question is: How fast do you call the Clinic for this? I think it is allergies but I'm not sure. Her energy is good and most of the time she seems great. She over did it in the sun the other day and came in the house with a headache and vommited, then she felt better. I usuall keep a close eye on the heat but it got away from us, she was in the pool most of the time so I thought she was keeping cool. Any help and advice would be great.
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advice please
- Thread starter anonymous
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Hi - How old is your daughter. Why was she in the hosptial? It sounds like more than allergies with a fever. Does she usu. throw up an get a headache with too much sun? How long has she had the night time cough and fever? Did she come out of the hospital on any meds? These are the kinds of things you probably need to consider to go forward. Whenever in question, I would call the clinic. I think it is much better to be proactive. Take Care! Jo Ann
Hi, If your daughter has been out for a couple of weeks now she should have a follow up coming up shouldn't she? I now when my daughter (16 yrs) gets out, her follow up is usually in four weeks. The other question, mentioned in another post, is how long has she had the night time cough and low grade fever? Just a couple of days or a week? Does she go in the pool often, or every day? The reason I'm asking that is because when we lived in Arizona we had a pool. Our daughters (16 & 12 both w/cf)were in the pool all the time. It seems to cause runny noses and sometimes post nasal drip. At least with my girls it did. The post nasal drip can cause the night time coughing. I don't know what causes that mysterious night time fever though. My oldest, last spring and summer, would get a low grade 100 to 101 fever come night time but it was a short run. Only lasting about an hour with no meds. We don't give tylenol unless it gets up over 101 or doesn't start coming down within an hour. That's just us though. When she went in to clinic it was a mystery to her docs too. Nothing else was effected. She was tired and would get red cheeks but within the hour it would start to go away and after a short nap it was gone and she was back 100%. Strange, I know. I myself would call the clinic to talk to the nurses after about a week. By the way my daughter had (has) allergies too. Hope I could help some way.Liza
Thank you both for the input, it does help. My daughter is 6. She was on i.v.'s in Feb. and again in May. I might be jumping just a little too fast trying to keep her out of the hospital for the summer. Both admits were for low pft's and coughing. She swims every day- a lot. I'm afraid to let things get away from us again, and at the same time don't want to have her put on meds. when not needed. Our next clinic is scheduled for Aug. 26th. She was at the clinic to get her picc out on may 27th. We just bought a trampoline thinking it would be good for also. She has a big dance recital the 21st and it would be terrible for her to miss it. By the way I did call the clinic today and they said to call back wednesday if the cough is any worse. Thanks again, Michelle
i'm a 20 year old woman from israel w/CF. my CF doctor has a policy of all of her CF patients calling her office/home/cellular for every decline in their health, whether it's hemophtysis or just a slight fever or anything in between. and that's exactly what i do. which works just great, because she hears my sympthoms and she's able to tell whether it sounds like a CF complication or nothing to worry about, and then i come to the clinic the next day if i should. sometimes she sent me straight to get hospitalized and sometimes it was really nothing, but the point is, it's great for me to be able to have such a close contact with my doctor - every time something's wrong, i get an answer and a solution very quickly. sometimes it's very important.why do you wait until the follow-up appointment - is it possible for you just to call your doctor and talk to him/her before you bring in your daughter?
In answere to the question, Why do I wait till the follow up appt.? I keep in touch over the phone just like you. Our clinic is 5 hrs. away so I can't just drop in for a checkup. We do go to clinic as often as they want us, and our hospital stays are at the clinic also. I just didn't want to be calling everyday and asking stupid questions. I was also wondering if I was looking for things too closlely and being perinoid. I believe in prevention and being aggresive, but at the same time it seems like she has been on a lot of meds. for a 6 yr old. I welcome all advice and thank everyone that replies <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hi - Please don't feel like like any question is stupid. We also communicate with our clinic by phone often, esp. for things we are familiar with. We try not to go except for our 3 month check ups and if he is sick and they need to do cultures, listen to his lungs.... You don't sound paranoid; you just sound like a Mom who loves her daughter. My son is 5 and we have known about the CF since he was 18 mos. One of the most important things I have learned is to go with my gut. When I feel lost or confused I call the clinic. Did your daughter culture anything recently (pseud....)? How does she feel? I hope some of this is helpful. Your daughter is blessed to have you. Take Care! Jo Ann
Hi Michelle. You mentioned that you called the clinic on Monday and they said to call back on Wed. if the coughing got any worse. How is she doing today? I have to say in our experience swimming almost every day is great exercise. It helps to build strong lungs. Encourage her (if you don't already) to.... I'm sorry I'm assuming she knows how to swim well... to retrieve things from the bottom if she is able. Start shallow and progress from there. I think I mentioned before, we had a pool when we lived in Arizona and my girls loved to dive for stuff they'd throw into the bottom of the pool, they enjoyed diving off the board and my youngest loved to just tool around the pool with her snorkel and mask. They were 7 & 10 when we left Arizona. A trampoline will also do wonders for the lungs. All the jumping jiggling things up. If your daughter is doing those things and coughing during or shortly after I would see it as a good thing. Sorta like PT. My daughters would both cough extra after jumping on their friends trampoline last year. It's when the coughing gets to be fits or spasmadic and they can't catch their breathe or it's keeping them from sleeping that I get worried to the point of "lets see if you can be seen". From what I"ve noticed in my own girls (mostly the older one because the younger one almost seems like she doesn't have CF) is that she does great after she gets off IV antibiotics for about three weeks then the cough comes back (which I know, a cough is normal for CF'ers) and she tends to start sliding backwards. My oldest has been hospitalized regularly almost every three months this school year until March. Fingers crossed, she is doing well and that little slide backwards didn't just keep on going like it had been. I hope that we have broken that "pattern". Like someone mentioned earlier, going with your gut feeling and just calling the clinic. Our clinic has a nurse line that you can speak to before deciding that your child needs to be seen. Being 5 hrs. away from your clinic makes it difficult to just pop on in, I know. Does your daughter have a pediatrician or Family Practice doc she sees for regular stuff? What part does he/she play and how closely do they work with your CF doc? Perhaps having them check her out, take a listen, do a breathing test, take an O2sat. It used to be when my daughter was starting to get sick her sats would start dropping. I used to just pop into the local med. supply store and use the disply to check out her sats. They don't have them around much these days, the store I went to. Also, how is she at keeping up with the other kids, is she getting short of breathe, and her appetite? All those are things to think about when you wonder if she's coming down with something again. You probably know all this but I know I didn't until my daughter was like 8 or 9. When it comes on slowly you don't notice, at least I didn't. Now I watch like a hawk, how they breathe when they are sleeping, how often and how much they eat etc. And last of all, how is she feeling? How does she say she feels? I hope that she is doing well and full of energy with less coughing and her fevers gone. Please let us know how she is. I hope that I have given some insite at least to how we deal with coughs and possible exaserbations(sp). Liza (mom of 2 CF'ers, 16 & 12)
Hi Liza, thanks for the info. Carly is doing about the same. Cough doesn't seem to be getting bad, but it's still there. Her energy seems to be good too. She does seem to be getting cranky in the evening, a sign in the past that I didn't notice. Overall she seems pretty well, but baseline in the past was no coughing at all. I wonder if that has changed? She does have a pediatrician, but I don't see her very often. It seems like everything with Carly is cf related and I use the clinic. I' have a hard time trusting anyone but her cf specialists. It seems like no one else really knows cf even if they think they do. I would love to talk more and you can e-mail me at dare2write101@yahoo.com Michelle