frustrated...son is sick AGAIN..it never ends

biz · Oct 24, 2011

thanks for the feedback everyone. we do see an ENT and aidan just had surgery in june. i do like the sound of the air quality in our house. getting the filter system that your taling bout sounds acary expensive. if u can give me a link on it i wuld love that. i would love it if aidan would comply on the sinus rinses but he doesnt and ive wasted so much money on them and saline sprays. its going to take some more growing up on his part to do them. we have done the hypertonic saline in the past and i did it at the lowest percent. and it messed him up good. he was so scratchy and raspy and irritated. for weeks after just one treatment of it. that too is going to take some growing into. weve done prednisone this past sinus infection and he has had it in the past to with other sinus infections and lung inflammation. it always worked in the past but this last one i didnt see any improvement from it at all.

update: ok heres whats happened. aidan got a sinus infection six weeks ago. we just finished the abx for that this past saturday. and by the monday before that he was 100 percent better. whew i was so releived. so then thursday comes along and hes all fuclempted..lol, a stuffy mess, sinuses blocked, little cough going on tired just a mess. i was like seriously!!!! he got a freaking cold.so i call into doctor disguss everything and we decided to sit on it do extra treatments and call her on monday. cause obviously abx dont work on colds. but what the concern is this cold turning into another sinus infection like they always have. so today is monday ive talked to clinic again. cause he is no better at all. and could possible be getting worse. they say its time to see the ENT again. i dont know what he is goping to want to do? should we ride this cold out for another week? i mean what is there to really do? is it wait and see what happens? see why im so frustrated!!!! please help me out with ideas..im not sleeping good. im so sick of aidan being sick for over 6 weeks now. and its breaking my heart to see him this way. i can see that he doesnt feel good.
-------------------------------------------------------------------------------------------------------------------------
Elizabeth

biz · Oct 24, 2011

thanks for the feedback everyone. we do see an ENT and aidan just had surgery in june. i do like the sound of the air quality in our house. getting the filter system that your taling bout sounds acary expensive. if u can give me a link on it i wuld love that. i would love it if aidan would comply on the sinus rinses but he doesnt and ive wasted so much money on them and saline sprays. its going to take some more growing up on his part to do them. we have done the hypertonic saline in the past and i did it at the lowest percent. and it messed him up good. he was so scratchy and raspy and irritated. for weeks after just one treatment of it. that too is going to take some growing into. weve done prednisone this past sinus infection and he has had it in the past to with other sinus infections and lung inflammation. it always worked in the past but this last one i didnt see any improvement from it at all.
 
 update: ok heres whats happened. aidan got a sinus infection six weeks ago. we just finished the abx for that this past saturday. and by the monday before that he was 100 percent better. whew i was so releived. so then thursday comes along and hes all fuclempted..lol, a stuffy mess, sinuses blocked, little cough going on tired just a mess. i was like seriously!!!! he got a freaking cold.so i call into doctor disguss everything and we decided to sit on it do extra treatments and call her on monday. cause obviously abx dont work on colds. but what the concern is this cold turning into another sinus infection like they always have. so today is monday ive talked to clinic again. cause he is no better at all. and could possible be getting worse. they say its time to see the ENT again. i dont know what he is goping to want to do? should we ride this cold out for another week? i mean what is there to really do? is it wait and see what happens? see why im so frustrated!!!! please help me out with ideas..im not sleeping good. im so sick of aidan being sick for over 6 weeks now. and its breaking my heart to see him this way. i can see that he doesnt feel good.
 -------------------------------------------------------------------------------------------------------------------------
 Elizabeth

mneville · Oct 24, 2011

my Aidan does culture MRSA in his sinuses consistently for about years now. we've tried everything to eradicate it but no such luck. his last surgery which was 4 weeks ago, he cultured MRSA, Staph and now PA so we did two more weeks of IVs. we started sinus rinses when he was 1. they were total torture for the first 6 months or so but we kept at it. if it weren't for those rinses, i swear he would need surgery every 2 weeks! we get out tons of nasty crap that would never have come out otherwise. you should definitely keep trying. we use neil med adult bottles and he loves them now! we do about 3 a day. even after surgery and 4 weeks of IVs, he did a rinse before and had a ton of extra, thick mucus in there...it's best when it comes out...when i don't get anything out, i know they are starting to get full again and then we're stuck. he usually gets 4 weeks after an extensive sinus surgery and IVs before it all starts all over again...it's horrible. And we do have a UV air filtering system for our house. plus he's been allergy tested for everything- negative. just horrid CF sinuses...

mneville · Oct 24, 2011

my Aidan does culture MRSA in his sinuses consistently for about years now. we've tried everything to eradicate it but no such luck. his last surgery which was 4 weeks ago, he cultured MRSA, Staph and now PA so we did two more weeks of IVs. we started sinus rinses when he was 1. they were total torture for the first 6 months or so but we kept at it. if it weren't for those rinses, i swear he would need surgery every 2 weeks! we get out tons of nasty crap that would never have come out otherwise. you should definitely keep trying. we use neil med adult bottles and he loves them now! we do about 3 a day. even after surgery and 4 weeks of IVs, he did a rinse before and had a ton of extra, thick mucus in there...it's best when it comes out...when i don't get anything out, i know they are starting to get full again and then we're stuck. he usually gets 4 weeks after an extensive sinus surgery and IVs before it all starts all over again...it's horrible. And we do have a UV air filtering system for our house. plus he's been allergy tested for everything- negative. just horrid CF sinuses...

mneville · Oct 24, 2011

my Aidan does culture MRSA in his sinuses consistently for about years now. we've tried everything to eradicate it but no such luck. his last surgery which was 4 weeks ago, he cultured MRSA, Staph and now PA so we did two more weeks of IVs. we started sinus rinses when he was 1. they were total torture for the first 6 months or so but we kept at it. if it weren't for those rinses, i swear he would need surgery every 2 weeks! we get out tons of nasty crap that would never have come out otherwise. you should definitely keep trying. we use neil med adult bottles and he loves them now! we do about 3 a day. even after surgery and 4 weeks of IVs, he did a rinse before and had a ton of extra, thick mucus in there...it's best when it comes out...when i don't get anything out, i know they are starting to get full again and then we're stuck. he usually gets 4 weeks after an extensive sinus surgery and IVs before it all starts all over again...it's horrible. And we do have a UV air filtering system for our house. plus he's been allergy tested for everything- negative. just horrid CF sinuses...

JENNYC · Oct 25, 2011

www.iqair.com/ is the web address where we got ours. Our house had to have a large unit and it was $3000, but in our case it was well worth it; and we were able to deduct it from our taxes as well. Not sure if it is right for everyone, but it was a God send for us. Abby has been tested for allergies twice and come up empty handed. So I'm not real sure how or why the air filter helps I just know that it does!(Praise God) <img src="i/expressions/face-icon-small-smile.gif" border="0"> Abby also does sinus rinses, singular, zyrtec, and a steroid nasal spray to help keep the inflamation down.

This is just what I do with Abby but anytime she starts getting clogged or sick, I run straight for the ENT. Her surgeon has come to know Abby very well and she can tell me by looking whether or not it is time for another surgery or if we should change up abx. As much as I hate sinus surgeries, I love them too because they always make her feel so much better. I pray that you get an answer soon, it's so awful to watch our babies feeling ill! <img src="i/expressions/face-icon-small-sad.gif" border="0">

JENNYC · Oct 25, 2011

www.iqair.com/ is the web address where we got ours. Our house had to have a large unit and it was $3000, but in our case it was well worth it; and we were able to deduct it from our taxes as well. Not sure if it is right for everyone, but it was a God send for us. Abby has been tested for allergies twice and come up empty handed. So I'm not real sure how or why the air filter helps I just know that it does!(Praise God) <img src="i/expressions/face-icon-small-smile.gif" border="0"> Abby also does sinus rinses, singular, zyrtec, and a steroid nasal spray to help keep the inflamation down.

This is just what I do with Abby but anytime she starts getting clogged or sick, I run straight for the ENT. Her surgeon has come to know Abby very well and she can tell me by looking whether or not it is time for another surgery or if we should change up abx. As much as I hate sinus surgeries, I love them too because they always make her feel so much better. I pray that you get an answer soon, it's so awful to watch our babies feeling ill! <img src="i/expressions/face-icon-small-sad.gif" border="0">

JENNYC · Oct 25, 2011

www.iqair.com/ is the web address where we got ours. Our house had to have a large unit and it was $3000, but in our case it was well worth it; and we were able to deduct it from our taxes as well. Not sure if it is right for everyone, but it was a God send for us. Abby has been tested for allergies twice and come up empty handed. So I'm not real sure how or why the air filter helps I just know that it does!(Praise God) <img src="i/expressions/face-icon-small-smile.gif" border="0"> Abby also does sinus rinses, singular, zyrtec, and a steroid nasal spray to help keep the inflamation down.
 
 This is just what I do with Abby but anytime she starts getting clogged or sick, I run straight for the ENT. Her surgeon has come to know Abby very well and she can tell me by looking whether or not it is time for another surgery or if we should change up abx. As much as I hate sinus surgeries, I love them too because they always make her feel so much better. I pray that you get an answer soon, it's so awful to watch our babies feeling ill! <img src="i/expressions/face-icon-small-sad.gif" border="0">

biz · Oct 25, 2011

okay so about what he cultures in his sinuses. in his last surgery they did culture him and he has pseudo in his sinuses. but i was told that it wasnt a big surprise cause he has it cultured in his lungs and is on cayston every other month. is the pseudo in his sinuses different from his lungs? so shuld he be doing iv after a sinus surgery also? so the rinses were disgussed today and im gona ask the ENT who were seeing tommorow to do one there by HIM so aidan can see what it is like by a doctor doing it. and have the doctor talk to him bout it and i just gota push thru at home. i gota! im so stressed and worried. cause tommorow i really dont knw what is going to happen that will be productive. if he gets aidan another CT scan were gona have to wait for the results, then go back to see him to disguss what to do. it takes me over 2 hours to get there. it really sucks for us. anyway any suggestions or info to my above questions would help me a lot. thanks again ya'll your great.
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Elizabeth

biz · Oct 25, 2011

okay so about what he cultures in his sinuses. in his last surgery they did culture him and he has pseudo in his sinuses. but i was told that it wasnt a big surprise cause he has it cultured in his lungs and is on cayston every other month. is the pseudo in his sinuses different from his lungs? so shuld he be doing iv after a sinus surgery also? so the rinses were disgussed today and im gona ask the ENT who were seeing tommorow to do one there by HIM so aidan can see what it is like by a doctor doing it. and have the doctor talk to him bout it and i just gota push thru at home. i gota! im so stressed and worried. cause tommorow i really dont knw what is going to happen that will be productive. if he gets aidan another CT scan were gona have to wait for the results, then go back to see him to disguss what to do. it takes me over 2 hours to get there. it really sucks for us. anyway any suggestions or info to my above questions would help me a lot. thanks again ya'll your great.
-------------------------------------------------------------------------------------------------------------------
Elizabeth

biz · Oct 25, 2011

okay so about what he cultures in his sinuses. in his last surgery they did culture him and he has pseudo in his sinuses. but i was told that it wasnt a big surprise cause he has it cultured in his lungs and is on cayston every other month. is the pseudo in his sinuses different from his lungs? so shuld he be doing iv after a sinus surgery also? so the rinses were disgussed today and im gona ask the ENT who were seeing tommorow to do one there by HIM so aidan can see what it is like by a doctor doing it. and have the doctor talk to him bout it and i just gota push thru at home. i gota! im so stressed and worried. cause tommorow i really dont knw what is going to happen that will be productive. if he gets aidan another CT scan were gona have to wait for the results, then go back to see him to disguss what to do. it takes me over 2 hours to get there. it really sucks for us. anyway any suggestions or info to my above questions would help me a lot. thanks again ya'll your great.
 -------------------------------------------------------------------------------------------------------------------
 Elizabeth

ptmorley · Oct 25, 2011

Hi Elizabeth,

My son has had numerous sinus surgeries beginning at 8 weeks of age. He is now 14 and I'll just list a couple things he has found helpful. I wrote a longer post yesterday but somehow deleted it and couldn't get it back.

Anyway, yes sinus rinses are very helpful. My son prefers the netty pot now, but when he was younger he used a water pik with a nasal irrigator. He would shoot that water up his nose and he got such a kick out of it coming out the other side. He and his older brother also made a total mess of the bathroom spraying the water pik everywhere but hey it got him doing the irrigation. I make my own salt water rinse, I think it is 3 tsp kosher salt, 1/2 tsp baking soda, and 1 quart warm water. Ask your ENT he should be able to tell you. I also had different family members try the netty pot. I tried it so I knew what it would feel like, his brother uses it when he is sick with a cold, etc. Introduce it gradually if he fights you on it because you ultimately want him to do these with out a fight. He will, it just may take some time.

Also does he use flonase, rhinocort or any other nasal steroid spray? Our ENT has always recommended that.

We've also used a viks personal steam vaporizor. It is meant for one person to use, you put your face up to it and the steam can be comforting to the sinus's. My son also loves to take long showers and that loosens things up in his sinus's.

A couple years ago when he was having a lot of repeated sinus issues he actually did a netty pot mixture of bactroban (sp?) I think that is what it was. The idea was to get an antibiotic right in to the sinus. It was marginally helpful but my son gets what they call mucus seals so he eventually needed surgery to clear the mucus seal and give him a fresh start.

Also check out sinusdynamics.com. They have a sinus nebulizer which it looks like nebulizes the medication right in to the sinus's. This makes a lot of sense to me, I am not sure how available it is. If you can't find the web site google sinus nebulizer.

I hope they can help you out tomorrow and get your son some relief.

Tara

ptmorley · Oct 25, 2011

Hi Elizabeth,

My son has had numerous sinus surgeries beginning at 8 weeks of age. He is now 14 and I'll just list a couple things he has found helpful. I wrote a longer post yesterday but somehow deleted it and couldn't get it back.

Anyway, yes sinus rinses are very helpful. My son prefers the netty pot now, but when he was younger he used a water pik with a nasal irrigator. He would shoot that water up his nose and he got such a kick out of it coming out the other side. He and his older brother also made a total mess of the bathroom spraying the water pik everywhere but hey it got him doing the irrigation. I make my own salt water rinse, I think it is 3 tsp kosher salt, 1/2 tsp baking soda, and 1 quart warm water. Ask your ENT he should be able to tell you. I also had different family members try the netty pot. I tried it so I knew what it would feel like, his brother uses it when he is sick with a cold, etc. Introduce it gradually if he fights you on it because you ultimately want him to do these with out a fight. He will, it just may take some time.

Also does he use flonase, rhinocort or any other nasal steroid spray? Our ENT has always recommended that.

We've also used a viks personal steam vaporizor. It is meant for one person to use, you put your face up to it and the steam can be comforting to the sinus's. My son also loves to take long showers and that loosens things up in his sinus's.

A couple years ago when he was having a lot of repeated sinus issues he actually did a netty pot mixture of bactroban (sp?) I think that is what it was. The idea was to get an antibiotic right in to the sinus. It was marginally helpful but my son gets what they call mucus seals so he eventually needed surgery to clear the mucus seal and give him a fresh start.

Also check out sinusdynamics.com. They have a sinus nebulizer which it looks like nebulizes the medication right in to the sinus's. This makes a lot of sense to me, I am not sure how available it is. If you can't find the web site google sinus nebulizer.

I hope they can help you out tomorrow and get your son some relief.

Tara

ptmorley · Oct 25, 2011

Hi Elizabeth,
 
 My son has had numerous sinus surgeries beginning at 8 weeks of age. He is now 14 and I'll just list a couple things he has found helpful. I wrote a longer post yesterday but somehow deleted it and couldn't get it back.
 
 Anyway, yes sinus rinses are very helpful. My son prefers the netty pot now, but when he was younger he used a water pik with a nasal irrigator. He would shoot that water up his nose and he got such a kick out of it coming out the other side. He and his older brother also made a total mess of the bathroom spraying the water pik everywhere but hey it got him doing the irrigation. I make my own salt water rinse, I think it is 3 tsp kosher salt, 1/2 tsp baking soda, and 1 quart warm water. Ask your ENT he should be able to tell you. I also had different family members try the netty pot. I tried it so I knew what it would feel like, his brother uses it when he is sick with a cold, etc. Introduce it gradually if he fights you on it because you ultimately want him to do these with out a fight. He will, it just may take some time.
 
 Also does he use flonase, rhinocort or any other nasal steroid spray? Our ENT has always recommended that.
 
 We've also used a viks personal steam vaporizor. It is meant for one person to use, you put your face up to it and the steam can be comforting to the sinus's. My son also loves to take long showers and that loosens things up in his sinus's.
 
 A couple years ago when he was having a lot of repeated sinus issues he actually did a netty pot mixture of bactroban (sp?) I think that is what it was. The idea was to get an antibiotic right in to the sinus. It was marginally helpful but my son gets what they call mucus seals so he eventually needed surgery to clear the mucus seal and give him a fresh start.
 
 Also check out sinusdynamics.com. They have a sinus nebulizer which it looks like nebulizes the medication right in to the sinus's. This makes a lot of sense to me, I am not sure how available it is. If you can't find the web site google sinus nebulizer.
 
 I hope they can help you out tomorrow and get your son some relief.
 
 Tara

biz · Oct 26, 2011

so went to see the ENT today. and i will never be going back to see him. he examined aidan and said he doesnt see any puss in his nose. wait! what? okay then basiclly handed me a box of sinus rinse and said he has to do these. short of that there isnt anything else he can do for us. so after i cursed him out in my head, i got into my list of questions. does he think the pseudo in his sinuses is causing this or maybe he has cultered something new? answer: well i didnt see any puss in his nose so i wouldnt culture him. okay next question since his last surgery do u think he blocked again or has new blockages? well the only thing i can do is go in there and irrigate his sinuses for him, which is what im already asking you to do at home. uh-huh! so after those lovely answers i said okay doctor heres the thing, Aidan has been sick for over 8 weeks now. and i will go home and try to do these rinses the best i can. short of pinning aidan down and forcing him. but what i am asking you is if we do not see any improvement what is your plan? i have to have the next step from here. i can not watch him being sick anymore? hes tired exhausted, he doesnt feel good all the time and i cant continue to live this way? answer: well hes tired because of the CF. okay i think this is when i checked out on this guy. now i knw when Aidan is tired because of his cf. its when weve been running around all weekend and hes run down. or when we go to the beach for the day. or when hes playing with his friends for like 5 hours. thats when his cf shows as far as exhaustion. i let that answer go cause i know the truth. i then said that im really worried that this isnt going to work and what would he suggest? he said to me, well then ill just put him on iv abx. but the only way i would want to do that is if he spiked a very high fever and his PFT's plumeted. thats what i can do from here. so i ended this checkup after that. took the sinus rinse from him and went right upstairs and found his doctor. so i told her everything he said and she disagreed with what he said about him being tired cause of his cf, that Aidan doesnt do PFT's thats he talking about we do PFT's for his age, its basicly just breathing into the machine. and that she knows its difficult for aidan to comply with the rinses but give it a try see how it goes but she really thinks we are at the point of iv abx. i did convince to give me one more week of cipro and a try with the rinses. so our plan is to do that and if that doesnt work then we have to do iv. if it does work but after a week goes by and he flares up again we have to do iv. so thats where i am. to tell you the truth i have no idea what to expect this week. im really hoping it works but i have strong doubts.
------------------------------------------------------------------------------------------------------
Elizabeth

biz · Oct 26, 2011

so went to see the ENT today. and i will never be going back to see him. he examined aidan and said he doesnt see any puss in his nose. wait! what? okay then basiclly handed me a box of sinus rinse and said he has to do these. short of that there isnt anything else he can do for us. so after i cursed him out in my head, i got into my list of questions. does he think the pseudo in his sinuses is causing this or maybe he has cultered something new? answer: well i didnt see any puss in his nose so i wouldnt culture him. okay next question since his last surgery do u think he blocked again or has new blockages? well the only thing i can do is go in there and irrigate his sinuses for him, which is what im already asking you to do at home. uh-huh! so after those lovely answers i said okay doctor heres the thing, Aidan has been sick for over 8 weeks now. and i will go home and try to do these rinses the best i can. short of pinning aidan down and forcing him. but what i am asking you is if we do not see any improvement what is your plan? i have to have the next step from here. i can not watch him being sick anymore? hes tired exhausted, he doesnt feel good all the time and i cant continue to live this way? answer: well hes tired because of the CF. okay i think this is when i checked out on this guy. now i knw when Aidan is tired because of his cf. its when weve been running around all weekend and hes run down. or when we go to the beach for the day. or when hes playing with his friends for like 5 hours. thats when his cf shows as far as exhaustion. i let that answer go cause i know the truth. i then said that im really worried that this isnt going to work and what would he suggest? he said to me, well then ill just put him on iv abx. but the only way i would want to do that is if he spiked a very high fever and his PFT's plumeted. thats what i can do from here. so i ended this checkup after that. took the sinus rinse from him and went right upstairs and found his doctor. so i told her everything he said and she disagreed with what he said about him being tired cause of his cf, that Aidan doesnt do PFT's thats he talking about we do PFT's for his age, its basicly just breathing into the machine. and that she knows its difficult for aidan to comply with the rinses but give it a try see how it goes but she really thinks we are at the point of iv abx. i did convince to give me one more week of cipro and a try with the rinses. so our plan is to do that and if that doesnt work then we have to do iv. if it does work but after a week goes by and he flares up again we have to do iv. so thats where i am. to tell you the truth i have no idea what to expect this week. im really hoping it works but i have strong doubts.
------------------------------------------------------------------------------------------------------
Elizabeth

biz · Oct 26, 2011

so went to see the ENT today. and i will never be going back to see him. he examined aidan and said he doesnt see any puss in his nose. wait! what? okay then basiclly handed me a box of sinus rinse and said he has to do these. short of that there isnt anything else he can do for us. so after i cursed him out in my head, i got into my list of questions. does he think the pseudo in his sinuses is causing this or maybe he has cultered something new? answer: well i didnt see any puss in his nose so i wouldnt culture him. okay next question since his last surgery do u think he blocked again or has new blockages? well the only thing i can do is go in there and irrigate his sinuses for him, which is what im already asking you to do at home. uh-huh! so after those lovely answers i said okay doctor heres the thing, Aidan has been sick for over 8 weeks now. and i will go home and try to do these rinses the best i can. short of pinning aidan down and forcing him. but what i am asking you is if we do not see any improvement what is your plan? i have to have the next step from here. i can not watch him being sick anymore? hes tired exhausted, he doesnt feel good all the time and i cant continue to live this way? answer: well hes tired because of the CF. okay i think this is when i checked out on this guy. now i knw when Aidan is tired because of his cf. its when weve been running around all weekend and hes run down. or when we go to the beach for the day. or when hes playing with his friends for like 5 hours. thats when his cf shows as far as exhaustion. i let that answer go cause i know the truth. i then said that im really worried that this isnt going to work and what would he suggest? he said to me, well then ill just put him on iv abx. but the only way i would want to do that is if he spiked a very high fever and his PFT's plumeted. thats what i can do from here. so i ended this checkup after that. took the sinus rinse from him and went right upstairs and found his doctor. so i told her everything he said and she disagreed with what he said about him being tired cause of his cf, that Aidan doesnt do PFT's thats he talking about we do PFT's for his age, its basicly just breathing into the machine. and that she knows its difficult for aidan to comply with the rinses but give it a try see how it goes but she really thinks we are at the point of iv abx. i did convince to give me one more week of cipro and a try with the rinses. so our plan is to do that and if that doesnt work then we have to do iv. if it does work but after a week goes by and he flares up again we have to do iv. so thats where i am. to tell you the truth i have no idea what to expect this week. im really hoping it works but i have strong doubts.
 ------------------------------------------------------------------------------------------------------
 Elizabeth

Treble · Oct 27, 2011

I don't really know how much this'll help, but with my personal experiences, this just seems to be how CF goes. Like, for the past year straight, I've been sick almost non-stop.
 I'm literally healthy for maybe 2-3 weeks at a time, and then im sick again with a virus, or massive lung flare up, or a virus that goes to my lungs and causes a massive flare up, lol.
 
 Being sick has been lasting me anywhere from 6-8 weeks at a time on average, and atm im on week 7 of yet another very slow acting virus that's just been keeping me nothing but battered.
 
 I've been on endless antibiotics too, and the only thing that hasn't been done to me at this point is giving me IV antibiotics because my PFT's never seem to go below the 40-55% area for the FEV1.
 
 I've had serious serious issues too outside of just the exhaustion that comes from it. My lungs have plugged so hard and badly during it that I felt like I was suffocating all day long (doc said just wait it out), I've had horrible fevers every day, tons of aches and soreness and pains everywhere, and just endless coughing ***** up to the point of throwing up every day.
 
 So really, getting sick all the time, to me, just seems like part of CF. and I guess maybe it can happen at any age?
 
 I dunno. Just throwin it out there, even if it isn't exactly what you'd want to hear. :/

Treble · Oct 27, 2011

I don't really know how much this'll help, but with my personal experiences, this just seems to be how CF goes. Like, for the past year straight, I've been sick almost non-stop.
 I'm literally healthy for maybe 2-3 weeks at a time, and then im sick again with a virus, or massive lung flare up, or a virus that goes to my lungs and causes a massive flare up, lol.
 
 Being sick has been lasting me anywhere from 6-8 weeks at a time on average, and atm im on week 7 of yet another very slow acting virus that's just been keeping me nothing but battered.
 
 I've been on endless antibiotics too, and the only thing that hasn't been done to me at this point is giving me IV antibiotics because my PFT's never seem to go below the 40-55% area for the FEV1.
 
 I've had serious serious issues too outside of just the exhaustion that comes from it. My lungs have plugged so hard and badly during it that I felt like I was suffocating all day long (doc said just wait it out), I've had horrible fevers every day, tons of aches and soreness and pains everywhere, and just endless coughing ***** up to the point of throwing up every day.
 
 So really, getting sick all the time, to me, just seems like part of CF. and I guess maybe it can happen at any age?
 
 I dunno. Just throwin it out there, even if it isn't exactly what you'd want to hear. :/

Treble · Oct 27, 2011

I don't really know how much this'll help, but with my personal experiences, this just seems to be how CF goes. Like, for the past year straight, I've been sick almost non-stop.
 I'm literally healthy for maybe 2-3 weeks at a time, and then im sick again with a virus, or massive lung flare up, or a virus that goes to my lungs and causes a massive flare up, lol.
 
 Being sick has been lasting me anywhere from 6-8 weeks at a time on average, and atm im on week 7 of yet another very slow acting virus that's just been keeping me nothing but battered.
 
 I've been on endless antibiotics too, and the only thing that hasn't been done to me at this point is giving me IV antibiotics because my PFT's never seem to go below the 40-55% area for the FEV1.
 
 I've had serious serious issues too outside of just the exhaustion that comes from it. My lungs have plugged so hard and badly during it that I felt like I was suffocating all day long (doc said just wait it out), I've had horrible fevers every day, tons of aches and soreness and pains everywhere, and just endless coughing ***** up to the point of throwing up every day.
 
 So really, getting sick all the time, to me, just seems like part of CF. and I guess maybe it can happen at any age?
 
 I dunno. Just throwin it out there, even if it isn't exactly what you'd want to hear. :/

frustrated...son is sick AGAIN..it never ends

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