Well our son is almost 15 months old now and it seems for the past 5 months at least he has been going through a horrible routine of getting sick, well, sick, and well. He will get congested really bad, have these terrible fits of coughing in the morning, so we bring him to the doc, get on antibiotics for about a week, increase his CPT. After a few days he is cleared up perfectly. He will have about 3 weeks of great health then he gets hit with the congestion again. Our biggest challange with him is getting his weight up. We do really great when he is well, but when he gets sick the weight just drops.
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Is this routine normal?
- Thread starter MrEjaffe
- Start date
Every Cf clinic is slightly different but the one we go to in the city cultures their patients every 3 months(at routine clinic appointment). They swab your child's throat with a sterile q-tip(kind of like when you would be tested for strep throat) to see if you are growing CF bugs. Not a pleasant thing to have done but it usually is quite quick. That way the antibiotic(if necessary) is correct.
For weight, have you tried any of those high calorie drinks?
Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
For weight, have you tried any of those high calorie drinks?
Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
I'm surprised to hear your son has not been cultured. Treating him blindly with antibiotics can be detrimental to his health in the fact that he can grow a resistance to meds he really needs if they are not using the appropriate medication to treat whatever bug he is growing.
Additionally, when CFers get sick,well,sick,well while on a round of oral antibiotics, most doctors usually consider using a nebulized medication-althought most doctors have done a throat culture by this point. Is this a CF clinic that you are going to? In your case, I would recommend before ANY more medications, you have a culture done. This will tell them exactly what your little guy is growing. THEN, they can do a pan sensitivity and see what his bug(s) are suseptible to. That is SOOOOO important to do. Based on the sensitivity, they can pick out the medications that will work the best for his bugs and give them to you.
I have a husband with CF, not a child so I am not sure how young children can start using pulmozyme, but is he on that med? If not, maybe ask the doctors about it and maybe another parent can comment on how young their children started using it?????
Keep us posted on how he's doingl
Additionally, when CFers get sick,well,sick,well while on a round of oral antibiotics, most doctors usually consider using a nebulized medication-althought most doctors have done a throat culture by this point. Is this a CF clinic that you are going to? In your case, I would recommend before ANY more medications, you have a culture done. This will tell them exactly what your little guy is growing. THEN, they can do a pan sensitivity and see what his bug(s) are suseptible to. That is SOOOOO important to do. Based on the sensitivity, they can pick out the medications that will work the best for his bugs and give them to you.
I have a husband with CF, not a child so I am not sure how young children can start using pulmozyme, but is he on that med? If not, maybe ask the doctors about it and maybe another parent can comment on how young their children started using it?????
Keep us posted on how he's doingl
I know when DS has gotten ear infections and I take him to the walk in clinic, if the doctor refuses to give him augmentin and opts for amoxicillan instead 'cuz augmentin is "just too strong" -- I end up back at the clinic in two weeks, pay for another office call and get DS put on antibiotics for another two weeks.
DS tends to get sinus type infections -- nasty boogery nose, which runs down his throat and makes him cough. Usually do saline spray up his nose twice a day and the doctor puts him on antibiotic until it clears up -- usually two weeks, once he was one a medication for a month.
He gets a culture taken every time he has cf clinic. Last fall he cultured HIB and was put on zithromax. Time before he cultured pseudo and was put on tobi. When we get the culture report it indicates what bugs he's growing and their sensitivity to antibiotics.
Liza
DS tends to get sinus type infections -- nasty boogery nose, which runs down his throat and makes him cough. Usually do saline spray up his nose twice a day and the doctor puts him on antibiotic until it clears up -- usually two weeks, once he was one a medication for a month.
He gets a culture taken every time he has cf clinic. Last fall he cultured HIB and was put on zithromax. Time before he cultured pseudo and was put on tobi. When we get the culture report it indicates what bugs he's growing and their sensitivity to antibiotics.
Liza
My daughter has the same routine in the winter months. Sick, well, sick, well. It seems like we are always on antibiotics. Usually by the 3rd or 4th phone call to the doc, they say it's time for a clean out. She does get a culture done at her 3 month check-up so it's easier for them to decide what antibiotic she needs. Sometimes it's more than one at a time. She started on Pulmozyme when she was about 18 months old. She normally isn't prescribed TOBI but it is prescribed from time to time when the bugs are really fighting the oral antibiotics. Usually just the 28 days and then we are done unless she continues to have problems. I agree with Julie, don't just give antibiotics blindly, make sure they do a culture so you know they are treating the bug that's causing the problem.
Sounds like maybe not the right antibiotic? Does he take Xopenex or Albuterol or any inhaled steroids?
We don't do cultures every visit. For one thing IF something showed up and PFTs are up and the kids are doing good, we still would opt not to treat. Also its a hassle, kids hate the throat swab, usually can't get enough up for a traditional sputum culture. I'm way past the point of holding an 11 and 16 year old down for a throat swab! So usually the doctor puts them on something broad spectrum like Levaquin or Cipro or a high dose of Biaxin or something. That usually takes care of it, if not THEN they start wanting cultures. They also go by the last culture reports and see what they typically grow.
My kids private practice ped pulmo and the CF clinic have all stopped putting kids on Pulmozyme and opting for MucoMyst and/or hypertonic saline. Apparently the last studies on Pulmozyme did not have great results and they say it only works for a small amount of patients and can actually cause lung damage. So not something I want my kids on!
We don't do cultures every visit. For one thing IF something showed up and PFTs are up and the kids are doing good, we still would opt not to treat. Also its a hassle, kids hate the throat swab, usually can't get enough up for a traditional sputum culture. I'm way past the point of holding an 11 and 16 year old down for a throat swab! So usually the doctor puts them on something broad spectrum like Levaquin or Cipro or a high dose of Biaxin or something. That usually takes care of it, if not THEN they start wanting cultures. They also go by the last culture reports and see what they typically grow.
My kids private practice ped pulmo and the CF clinic have all stopped putting kids on Pulmozyme and opting for MucoMyst and/or hypertonic saline. Apparently the last studies on Pulmozyme did not have great results and they say it only works for a small amount of patients and can actually cause lung damage. So not something I want my kids on!
A throat swab tells what is growing in the back of the throat, and sometimes is indicative of what is growing in the lungs...not always though. At the age of about 5 or 6 (at least at my husband's CF clinic) CFers are expected to cough up stuff. Our clinic does do both though, a throat swab and a sputum culture because what is growing in the lungs isn't always in the throat and vise versa.
Hope that makes sense/helps answer the question
Hope that makes sense/helps answer the question