Hi There,
I am going to be totally honest with my post. I am NOT trying to be hurtful or bash you in any way and I will be upfront in saying if it is indicated that I WAS intending to be hurtful I will be quite angry because that is NOT my purpose here.
I also am from Jacksonville and I went to the same Clinic that Zoe attends, so the same clinic as you (if that is the clinic you attend). I am NOT a parent to a CFer but actually a CFer. I am going to be 25 in the coming weeks and just received a double lung transplant. Also NOT trying to scare you but being honest. MY PFTs were in the 80s when I was older than your daughter and I had frequent "tune ups" to treat flare ups of infections and I did my meds as I was supposed too. If you are NOT treating your daughter with all of the prescribed meds all the time and only giving them when she is ill it defeats the purpose. The point of many of these meds are to PREVENT problems.
When I first started taking Pulmozyme (as part of the original studies) I had difficulty being compliant until my doctors told me that Pulmozyme is a drug that is more effective over the LONG HAUL. It is not so much a drug that is made for use only on occasion. It may be helpful every now and then but the intended purpose and maximum benefit is going to be prolonged continuous use.
As for the idea the Nemours may be "over zealous" with the IVs. I find that hard to believe when I would have to beg them to put me on IVs as a teen. I started seeing them when I was 11 and went 3 years without IV treatment - when I had previously been going in the hospital every year. Also to add I WAS sick throughout that 3 year period. I was sick almost every other month and they treated me with oral antibiotics until I told them I would NOT take another antibiotic unless it was an IV because I was tired of them not really working.
I can understand your hesitations about the bacteria your daughter might get in the hospital - as I myself caught a bacteria in the hospital during my teens that is still in my sinuses now post transplant (though it is NOT in my new lungs). I also know that most of the time if you can prove your competency in taking care of your kid (that is NOT meant as a personal attack but a general statement) that many CF docs want CF patients OUT of the hospital as quickly as possible and on home IV treatment if it is at all possible. I personally always got home IV treatment after a few days in hospital when I was a pediatric patient at the same clinic you are at. I stayed in hospital long enough for them to get the proper medication levels and then I was sent home.
Also to add you really need to know what your daughters breathing tests are not just a 20% ballpark estimate because there is a HUGE difference between 100% and 80%. Who cares if they are both within a normal range one is teetering on the edge of "not normal" and the other is holding strong at "perfect". Again not meant to be a bash - so don't take it as such. Many times the clinic will not give information that is NOT asked for not because they are withholding but because they think you will not want to know or not understand. You have to ask questions and tell them explain things and they will do it. I asked questions non stop and still do to my doctors now - I remember having appointments that lasted 1-2 hours at Nemours because I asked so many questions as a teen and into adulthood. Having the information is key and it is also key to understanding why they are doing certain things. ASK THEM - the nurses, docs and techs in that clinic will be more than happy to explain things to you - at least they were with me and most people I have known.
I will also so that you could very well be doing your daughter a disservice by closing your mind off to tune ups and IV treatment. You say you are not opposed IF she needs them or that tune ups benefit those with low lung function and that is misguided information. Part of the reasoning behind "tuneups" at least when I was younger and first heard the term was to PREVENT major exacerbations and to PREVENT serious lung damage. You do NOT want your child to get to a point where she HAS low lung function before you decide to treat her. By that point all the IVs in the world will not really help her. Trust me I know as well as many others on the site. The lower my lung function got the harder it was for me to recover, the longer I had to stay on IVs and the less time they remained effective after I stopped taking them. When your lung function is lower you lose the ability to really recover and to prevent infection because the lung tissue becomes so degraded and is just consumed with the bacteria.
As for the beginning of the end comment - I am going to be blunt you need to lose that mindset. You WILL be doing your daughter a disservice if you keep thinking that way because the last thing she will need growing up is to look at her life as a means to an end or to think that EVERY time she gets ill if she allows herself to receive IV treatment it is the beginning of the end. It is not that you don't have a right to be upset at the idea of your kid being hospitalized, but the way in which you perceive this event will likely shape the way your daughter perceives it as well. Just keep that in mind. You want her to be confident in her ability to take care of herself and also make the proper decisions even if they may not be EASY or what she WANTS. She will need to be able to, as well as you need to be able too, look at a situation objectively and weigh all the options and make the best possible decision. Gather facts and information and go from there.
Also typically when I was admitted at Nemours I would submit a culture and then be admitted - before the results were back. That was for me though and I always cultured the same bacteria.
Also to add I know of many people that had cultures and things done and nothing came back but they took IV meds anyway because of the coughing and the mucus production and those things went away with IV treatment - the bacteria might not have been identified BUT apparently something was there that the IV meds treated. Basically just because the bacteria don't show up in cultures doesn't mean nothing is going on. If your daughter is coughing and it is productive - meaning green sputum or even a dark yellow sputum - then there is most likely something to treat.
As for the enzyme issue you had in your previous post - about how you don't give them to her unless she is having issues. That is crazy because it is not helping with the immediate problem. Not giving her enzymes at dinner will cause her problems in the middle of the night or a few hours after dinner and at or around breakfast and the next afternoon sometimes even. It really won't help the immediate problem to give them ONCE she is having a problem. It will help to prevent the problem fro continuing for days, BUT the actually cramping, diarhea and such will have just passed on its own really. The whole purpose of the ezymes is to HELP absorb and digest foods and PREVENT bowel problems. Also if your daughter eats ALOT then she SHOULD gain weight and be heavier with the enzymes that (her weight) does NOT mean she does not need them it just means that they are doing their job. If her stools float then they are fatty and she is not absorbing properly. Not only is she NOT absorbing food but anything else that goes into her stomach - be it food or other medications. Also Enzymes work best if taken with the first bites of food according to the docs I have had - that is not to say you can't take them during or shortly afterwards - but please give them too her at every meal she will thank you because trust me those gas pains are NOT fun in any way.
I will shut up now because I have gone on longer than intended but I wanted to put that info out there from a CFer that went to the clinic you now go too. They did not ever recommend IV or hospital treatment for me just on a whim there was normally some underlying reason. They are just trying their best to take care of your kid and KEEP her healthy for as long as possible.
Oh I also wanted to add - I went in the hospital about every year from my diagnosis at 1 yr to my 20s (barring that 3 yr break) then I started going in about twice a year from 20-23 and when I turned 23-24 I started going in three times a year (I am still 24 BTW). I did NOT get a port until this past January at the age of 24, so just because you have frequent tune ups does not mean you get a port necessarily.
Take Care
Lindsey
