Who to call pediatrician or CF team?

[Beccamom]

When you or your child is sick who do you call? Do you call your pediatrician? Do you call the CF pulmonologist? What about ENT?

I am diagnosed with CF my daughter age 13 remains in diagnostic limbo. For myself I just Email my CF team any questions and they are always helpful. For my daughter I am never sure who to call. This weekend she got sick 102 fever Saturday and Sunday night more coughing, but the sinus drip kind not the junky lung type. Her nose and cheek bones hurt a lot and her nose is really stuffed up. I figure a sinus infection. She had sinus surgery due to frequent infections polyps etc in the past. I took her to the pediatrician who says probably the flu suggests cough medicine I refuse. I was told by pulmonologist to encourage not stop coughing because she is clearing mucus from her lungs. Instead I increase her vest and hypersal neb to 3 times daily as the pulmonologist suggested in the past.


Today the pulmonologist calls because the pediatrician called them for advice knowing I would call him tomorrow since she is no better. They were a mad that I took her to the pediatrician verses calling them. They called in Tamaflu and suggested calling the ENT about sinus problem to get antibiotic if needed.

I just feel lost about who to call when? Any suggestions.

 

[Justinsmama]

No suggestions but I definately feel your frustration. I never quite know who to call for my 8 year old son. Pulmo side is better than GI, don't seem to get any answers there from anyone. GI said to not call about his nausea anymore, just call ped.

 

[Beccamom]

Justinsmama thanks for the post. I get mixed messages. This time I fealt like I knew what to decline from the pediatrician, but I didn't know to ask for the Tamaflu. The nurse really made me feel guilty about not calling the pulmonologist.

 

[Aboveallislove]

I always call the CF team (or GI) first because everything could be CF or his meds and they'll tell me if they want me to call ped. So for instance, DS had brown pee. Who knows if it could be a medicine reaction or a serious CF kidney thing, whereas ped. might just think "normal" kid stuff, even if CF. And that was the on-call doctor, not during normal hours. The CF doctor assured me not a CF thing and not a medicine reaction and gave me guidelines on whether to take to ER or wait to call ped (so I didn't bother both). And when we went to ER for "constipation," the ER doctors were ready to release until they called CF clinic (same hospital) and admitted b/c of DIOS. Just today I called CF clinic b/c DS has had more vomitting and seems to have problems swallowing. I wanted to make sure it wasn't a side effect from a steroid he started 10 days ago or thrush in esphogas (sp?), both which would be related to a med they had prescribe. They answered those qustions and said to call ped. if continues or gets worse. I asked nurse a tad more b/c didn't want to take him to ped. for nothing when EVERYONE has cold/flu up here and she suggested putting the bug in GI's ear, so called them too, since he has definitely a GI component.
Also, from a practical perspective, CF clinic gets back to me sooner and would be more likely to do a antibiotic by telephone and ped. would need to call CF re any antibiotic anyway. That said, our ped is a much better all around doctor than CF and GI--he just has the experience the "teaching hospital" doctors don't, and he will talk to me on the phone, so I've actually run concerns I've had by him re treatment (mostly GI) to see if he had any other thoughts/suggestions and to also see if he thought a second opinion was warranted. Also, I don't think I over use the CF center--even though the above don't sound like biggies (not cold or flu or even cough), I now probably call 1x, maybe 2x, in three months, i.e., between quarterly visits with concerns. (When tummy issues were bad and before we had a diagnosis/treatment on the GI sttuf I was calling 2x or 3x a week because I knew something was wrong and finally ended up in ER.) That said, any cough I wouldn't hesitate to call weekly if I had too.

But again with all that all said, I completely understand why you started with the ped and I'm so sorry the nurse made you feel guilty. There is no way we can know the right answer and stuff like knowing to get Tamiflu we learn as we go. Hope your not so little one (but always little in your heart) is feeling better.
Hugs and prayers,
Love

 

[Printer]

I always email my CF Doctor first. He responds with instructions for me to follow.

Bill

 

[JennyCoulon]

I have "gotten in trouble" from the CF Clinic for calling our Pediatrician for a cough, etc. Our pediatrician is in our home town and she is very familiar with our 2 boys and their CF. She does cross check her thoughts with our CF clinic to make sure they are okay with it, etc. It is easier to get into our peds office and much quicker. If it is something like a cough or shortness of breath, (CF related) then I just call the clinic and tell them the symptoms and then they check with the doctor and get back with me on treatment. If it is strep throat or a fever, ear pain, etc. then I get them into the peds clinic.

Ultimately you are their parent and you know your child more than anyone. If you are comfortable calling your pediatrician for some things and the CF clinic for others that is up to you. I sometimes get irritated with the CF clinic for telling me what to do. I mean not with meds, etc, just their thoughts on certain things. Sometimes I just want to tell them that they may have gone to school to work with CF patients but they do not have a CF patient in their home that is their child. Hope this helps....

 

[Ratatosk]

I always call the CF clinic first as well. When DS was a baby, he developed a rash, fever and a little bit of a cough and I took him to urgent care and the doctor prescribed prednisone and some other drugs. I didn't fill the prednisone because I remembered the CF doctor mentioned something about it. And when I spoke with the CF clinic they indicated they had concerns because it can raise blood sugars and cause more issues. There were appropriate times to use it, but they didn't feel this was the case.

Another time I took DS with a horrible chesty cough and the pediatrician told me "they (people wcf) cough, it's what they do." Couple weeks later, the CF doctor yelled at us because DS had bronchitis and didn't we know he could've ended up back in the hospital.

 

[scrapper1264]

I always email the CF pulmo since she knows him so well. She will refer us to the ped or local CF pulmo (since she is 2hr30m away) if necessary.

 

[Gammaw]

This issue was very confusing to me for a long time, but I figured out what works for me - Call the CF Clinic first. If it's CF related, they will know. If its not, they will know and tell you to call your ped. You can't really say the same thing about your pediatrician. The ped may think its normal kid stuff, when it's actually CF related. And thats where the danger is . . . . Not the other way around. So I act in a way that decreases the greatest danger - an untreated or undertreated CF problem. Please understand, I really trust and respect our pediatrician. It is not unusual for me to actually run the CF Clinic recommendations by my ped to talk it out. And I expect them to share clinic notes and consult with one another as well. That said, some things are obviously in ped territory like vaccinations, school physicals, cuts, scrapes and broken bones. But if youre dealing with the chest or gut problems, the CF Clinic is first on my call list. Our CFer has sinus complications too, so I usually call the ENT AND the CF Clinic. And I am upfront telling them both that. The ENT knows we are dealing with CF, but may not be as aggressive as the CF Clinic is. The CF Clinic will sometimes say, call the ENT and if they don't prescribe something, or you feel uncomfortable call us back and we will discuss it with them. I let them work it out. I prefer to err on the side of my CFers health. . . . Covering all bases, which they should all understand or I have the wrong doc!

 

[ymikhale]

I always call the hospital when my dd has respiratory symtoms. Pediatritians do not have the extensive training to treat CF and on top of that they will have to call the CF center anyway to get last culture etc. If they don't, all the more reason to call the clinic directly