Constantly on antiboitics....

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anonymous

New member
Well, my little girl, 2 1/2, is going back on some oral antibotics today (actually she started yesterday). Five days ago she completed a 10-day dose. Now we are going with a 14-day. I'm not sure if this is allergies or something else. There's a lot of crud going around right now, big brother (4) and little brother (1), as well as the little boy mom keeps during the day, all have been passing it around. The church kids are all sick as well.

She developes this cough and it keeps her up all night. Then she's tired during the day and doesn't have a lot of energy, which of course effects her appetite. Just a vicious circle.

This happened to us in the fall and in December we had a tune-up. Started out in the hositpital for 5-days and then came home for 10-days with a PIC line. After that you could tell a complete turn around in her. She actually gained 3 pounds in one month (25% on growth chart!!!!!)

In Febuary the doc talked about putting in a port and doing tune ups 2-4 times a year. After seeing the December effects we were deffinetly for it. But resistance was something I was afraid of. I posted on this site and got a lot of negative comments on tune-ups like that. Two reasons, one was the resistance build up and two was the hositpial stays. The second was a mute point as the port line would elimate the hositpital stay, or at least reduce it to a couple of days. I'm starting to wonder if the resistance point is mute as well. We did a 10-day round, waited 5-days, and now started a 14-day round. That's not good.

I'm really starting to think it might be allergies. It seems weird that a course can clear her up, but then she gets the cough back right after the course is over with. We started looking at ways to deallergize the house in November, but without getting rid of the carpet I didn't think there was much you could do. I bought some wood floor last weekend, don't know when I'm going to get time to put it down though. I'm starting to think I need to stop what I'm doing and lay the floor down.

Oh well, just a lot of rambling. Anyone out there experience the same thing?
 
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JazzysMom

New member
Has she had xrays to show what if any damage has occured to the lungs? What if any sputum cultures were done? I am an advocate of aggressive treatment especially at a young age so to catch it before it gets out of control, BUT......just for a cough is something else. Allergies & Asmtha can cause a cough & yes iv antibiotics can help ease that cough even without infection so that can be why it returns. Does your child use Albeuterol? Is she on anything for allergies or has allergies even been addressed? Sorry for all the ???, I just am trying to get a better picture of the situation!
 
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anonymous

New member
Do you do CPT and nebs? Our doctor has told us that if DS gets a cough or gets wheezy to increase his treatments -- "beat that cough out of him" to prevent that mucus from sitting in there and getting an infection, cause scarring etc. We do CPT 3 x a day and when he gets something we do a 4th one and sometimes I'll do some mini-cpt -- whack him a few times while watching tv or sitting in church.

Liza
 
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anonymous

New member
she has never grown anything out on the cultures. We do increase breathing treatments during when she starts a cough.

Normal: CPT x2, albeuterol x2, pulmozine x1
cough start: add pulimocort and increase CPT and albeuterol

Her cough is such she can't really sleep. No other symptoms though

I'm really starting to wonder about allergies. We have taken our time on the floor, its just a lot of money and time. But I'm starting to wonder now. From what I've read, if you don't get rid of the carpet than you haven't done much to allergy proof your house. We went with pull down shades to get rid of the blinds, and we got rid of her stuff animals. But I don't think thats much when you still have a house full of carpet.

I have a call into the doctor and waiting for a call back. i'm wondering if I should we should go see a allergy/ent doctor. But then what would they do?
 
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JazzysMom

New member
From what you say it definitely sounds more allergy related. If you get that darn post nasal drip that causes a tickle in the throat which causes the cough that can never seemed to be relieved & it ALWAYS happens at night time when you are trying to sleep. An allergist or a ENT (ear, nose, throat doctor) can at least confirm if part of her problems are allergies or sinuses. Some CFers have severe sinus problems so dont rule out the head even if its not "allergies". I have hardwood floors with area rugs, but grew up & lived most of my life with wall to wall carpeting. I also have animals etc. I know part of my problems are allergies, but I am willing to deal with that to have my home the way I want it. Of course I am an adult (usually) versus being a child where the decision isnt necessarily mine. Back to your original concerns. I would be concerned about the frequent use of antibiotics of tests arent showing an exacerbation & they are basing it just on the cough/junkiness!
 
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anonymous

New member
I'm really thinking allergy right now. I have been plagued with them all my life. Until the past couple of years it has always been sinuses, but latey my nose has been clean but have developed the "drip" which is really a problem.

My daughter is on Xertex, but nothing over hte counter. The doctor said no over the counter allergy stuff, can't remember why.

Its just frustrating. We went through this a couple of months ago and got her up and going and doing good. Then it hits us again.
 
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anonymous

New member
DS pretty much had a sinus infection for most of last winter. And the stuff would run down his throat and make him cough. The doctors just didn't have him on the right antibiotics. Finally one doctor put him on a month of augmentin to knock out the infection. We were also told to squirt saline up his nose twice a day.
 
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anonymous

New member
Hi there,

My daughter is 3 and she went through something similar last summer. However, she is growing a bug MRSA. She just kept coughing, we'ld hit her with some antibiotics , she'ld almost stop coughing stop the antibiotics and it would start up again. Her weight was decreasing, she was sounding awful. It ended up she went in for the works: 2nd opionion, bronchoscopy(make sure we were treating the right bug), picc line and hard core IV antibitotics followed by home cleanout. She also now is on prophylactic oral antibiotics every day to prevent a reoccurance. She got through the winter great after that. However, right now she is fighting off a cough but we're on hard core oral anti's and aggressive airway clearance. However, her wiehgt is great and I'm praying what we're doing this time works. She is also on pulmicort, pulmozyme, albuterol as well. My daughter had alot of inflammation in her airways along with the MRSA it's a viscous(sp?) cycle whcih just causes more and more coughing for her.

I worry tons about resistance but she already IS resistant. She couldn't keep on coughing the way she was. so this is the route we took.


When she was doing her night coughing last summer I thought about ripping up my carpets. I even bought a new vacuum cleaner. I don't think this made a difference. We did try allergy meds with my daughter they didn't do anything either.

Rebecca( mom to Sammy 7 no CF and MAggie 3 with CF)
 
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AmyKins

New member
I would try benedryl (sinus)- its the ONLY thing that clears up my post nasal drip- the ENT doc. keeps telling me to take sudafed, but it just doesn't work. Having post nasal drip can drive you nuts- I have the same thing a constant cough from my throat- maybe just try it to see what happens, but it does make you sleepy.
 
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anonymous

New member
After we got DS's nasty boogies cleared up, I asked his doctor if in the future we could use a decongestant or antihistimine to dry things up or get things moving out and we were told absolutely not. Something about the nasal tissues being different in CFers... ?

We have used zyrtec as per a prescription, but it's usually a one or two shot deal (dose). He's allergic to mosquito bites and once in awhile has had a reaction in which he gets all spotted.
 
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anonymous

New member
Hi,

My daughter has traveled a similar road to your daughter's. For the first two years of her life she had IVs five times, sometimes for three weeks. Orals never did the trick for her.

She rarely cultured anything either. However, she has had three bronchoscopies. The first identified Pseudomonas, the second, Stenotrophomonas, and the third showed aspiration of food. She never cultured these bugs on throat cultures. She now frequently cultures the Stenotrophomonas.

I would take the allergy route first (less invasive) and see if she has allergies. Also, does she have reflux? That can cause a strong wet cough. But you might want to ask about a bronchoscopy. Some of those bugs hide deep in the lungs.

I also noticed a HUGE improvement in her respiratory issues when we received the Vest. It has done wonders for our daughter! Her lungs are so much clearer now.

I have noticed that as my daughter approaches three, she seems healthier and able to fight off infections better. Orals now do the trick. Our CF team always told us that thr first couple of years are the most difficult. They said things would improve as her airways got larger. I feel this is what is indeed happening (FINALLY!)

Good luck,

Maria (mom to Sami, almost 3, w/cf)
 
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AmyKins

New member
I guess every doc. is different- I asked mine about benedryl & I talked to the ENT about it- they both said it was totally fine- so I guess it depends on who you talk to. I didn't take it everyday, but when I was really suffering...
 
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anonymous

New member
We moved to an apartment last summer before we moved into our house. My four year old daughter with cf started coughing at night every night the first week we moved in. I really think it was the carpet. A few weeks later she was still coughing nightly. I filled a prescription for inhaled mucomyst (1ml albuterol, 2ml acetylcysteine, 1ml chromolyn sodium). One of her cf doctors recommended that she try mucomyst months before she woke up coughing nightly. That first night after inhaling the mucomyst she didn't wake up coughing. It was the same for the next three weeks. One night we got home late and she did not inhale the mucomyst. She woke up coughing that night. I skipped her mucomyst one night a few weeks later to see if the same thing would happen and it did. Mucomyst was commonly used about 20-30 years ago for cf patients. The Minneaplis cf clinic recommends it for its patients instead of pulmozyme. Not sure why it helped her allergies, but it did.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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