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At what age did your kiddos start culturing bad stuff!!
- Thread starter Dowling
- Start date
DS came home from the NICU with Enterbactor Choclae (sp) and a nasty cough/bronchitis. Then at three months, before he started daycare, before he went anywhere other than the clinic because I was on maternity leave -- he cultured pseudomonas a. Also cultured h. flu that first year. Avoided the RSV and whooping cough that made the rounds in daycare that first year as well. He's been enrolled in gymnastics and swimming lessons for a number of years, goes to the lake every weekend. Plays in the dirt.... In more recent years he's cultured steno. maltophilia. Pseudo and H. Flu haven't made an appearance since he was a toddler.
Aboveallislove
Super Moderator
I think genotype has some impact. Ds is 4 and we don't do water. He has cultured staph since 1 month and h- influenza from about 1.5-2.75 and hasn't since. But nothing else. His gi track is a mess and the thought of doing antibiotics to help with infect worries me re impact on gi track not to mention horror of flagyl to offset. Which reminds me to ask..do inhaled nit bioethics mess up good bacteria in gi track or only oral?
My daughter was 8 before she was diagnosed, so she was treated as "normal" until then and we try to keep that mentality. She has cultured staph since diagnosis; she just turned 16. We haven't really restricted her from any activities (that we wouldn't keep her "healthy" sister from doing). She has swam in lakes, gone to bonfires, played in dirt/mud... But if the lake seemed gross, neither her nor her sister would be swimming it. We did stay away from bonfires when she was younger, but really how can you keep a teenager from going to a beach bonfire?
I think each kid is different like some have sinus issues and some have lung issues so I would think each "plan" should be according to what your little one can tolerate well. For instance Abby had awful sinus issues so bonfires or smoke of any kind set her off and usually resulted in a hospital stay. But I see others doing that all the time and their CFer's seem to handle it well. Another of Abby's triggers we have found is a bounce house....go figure. So I think it is trial and error. I know that probably doesn't help much but you will just know what feels right and what throws up warning signs every where. Good luck!!
Been forever since I chatted on this sight. But the chats are interesting and wanted to chime in . Ainsley is ddf508 and now 9, she has not cultured anything yet, knock on wood, her last pft was 117, she has always scored above 110. We don't restrict her from anything, we also have 2 boys and whatever they do she does. This includes bonfires (which I never realized was an issue), sleepovers, lakes and competitive soccer. She wouldn't want to be treated differently nor would I dare because the wrath of Ainsley would come down on my head. She experiences everything to the fullest and I hope to be able to support that for a long time.
PACmommy, I love hearing from parents who let their cf kids be kids. Like you, my parents never restricted me based on CF. If I wanted to try something, they let me. For me, being able to grow up as a kid, not a CF kid, gave me so many amazing and wonderful memories and such a full childhood that I wouldn't trade them for the healthiest lungs in the world.
PACmommy I love hearing from parents who let their cf kids be kids. Like you, my parents never restricted me based on CF. If I wanted to try something, they let me. For me, being able to grow up as a kid, not a CF kid, gave me so many amazing and wonderful memories and such a full childhood that I wouldn't trade them for the healthiest lungs in the world.
Thanx for this comment. I sometimes get insecure when I see others talking about thier little cf ers not doing this or having to take this or that. Ainsley does pep, vest, enzymes, adeks, sinus rinses and nasonex. I give her fishoil and vit d on top of that but I try to keep her regiment to a minimum because I dont want her life to be ruled by her disease.
I'm a paramedic and every day I see people with illnesses, I know that life can end in an instant whether or not you have an illness, so be thankful for today and live it to the fullest. I worry as much as the nexr cf parent but I believe that a rich life is as valuable as a long life. So far we have been lucky and she has never been too sick, that may change some day and we will deal with it as it comes but for now we choose to enjoy and celebrate all our children.
Aboveallislove
Super Moderator
You have to keep in mind that it is easy to let kids be kids when they aren't having the complications of CF. But for instance with the one who stopped swimming, the trade off was between swimming and being sick and having antibiotics and potentially hospitalizations. I think Jenny said it best that you have to figure out what works for you and your kids. Our son has constant GI issues and many a days are spent just dealing with that. Adding an antibiotic and further messing up his GI bacteria balance followed by 2 weeks of Flaygl to address that problem (which also means DH has to take work off to hold him down and he'll still vomit the stuff up 1/2 the time), isn't going to give him a normal life either. Either way his life isn't going to be normal, either restrictions ore more complications. Yes, we have restrictions that some others don't choose (like swimming), but within those we do other fun things that don't pose the same risks of otherwise restricting his life with pain and even more doctors and hospital stays. And with drugs so close to helping really address the problem, some restrictions now when he is young and isn't missing anything (or knowing he is), so he can have fewer restrictions as an adults (less treatment b/c less permanent damage, no lung transplants, etc.), is another consideration.
My daughter cultured Pseudomonas for the first time ever this past March. All her previous cultures only ever had normal flora, this time did require Cipro and Tobi but after the courses were completed her culture again showed only normal flora. I do restrict many of her activities and to date she has had no hospitalizations. She did receive RSV vaccines (5 months each time) when she was a year old and two. After age two there is no benefit to the vaccine so it is not continued and it is very expensive so I wasn't sorry that she didn't receive it after age 2. She does get her yearly flu shot as does everyone in her close circle. She entered school this past year and only missed 6 days for illness. She is an absolutely terrible eater, gets most of her nutrition from a supplement so allowing her to do a lot of the activities that can cause concern for me are often not an option. She was allowed to go to a pond swimming twice this past month and probably won't be allowed again. She did pick up a case of Fifth's disease after the last time that for a person who already has respiratory issues can be very problematic. Thankfully it hasn't caused any major problems to date. It would probably be better for her to be a bit more active but until she can get to be a better eater she is probably not going to be given that opportunity. She tires out too easily and I am very fearful of what could happen to her overall health.I applaud all the parents and caregivers who find themselves being able to allow their CF children to "live" normal lives but at 6 years old she has had no major health issues and I'd like to keep it that way.
Who says I'm not keeping that in mind? As a family we deal with the reality of CF every day and just because she is healthy today doesn't mean we haven't had our share of bumps in the road including GI and sinus and lung issues. Just because we choose to not to dwell on them and to let her live as "normally as possible"doesn't mean its easier for us. Cause you know as well as any a life with cf is not normal Even when healthy. My comment wasn't meant to belittle you. I was sharing my experience and some of the lessons I have learned and choices we make as a family which was affirmated by one who has grown up with cf and regarded that choice as worth the risk.
lilmac1177
New member
my mom never kept me from anything as a child w/ CF; i had bronchitis once and admitted only one time in 11 years for pneumonia! i strongly believe that by not being germaphobic, i developed an immunity of sorts to many of the bugs out there! as the normal progression goes, adulthood w/ CF has seen decreased lung function and i've been admitted much more, but i think it's more due to just that - the progression of CF - and not because i'm overly susceptible to such things as bodies of water, bonfires, etc. i culture steno and staph (have cultured pseudomonas in the past), but rarely do i get simple colds, the flu and the like...
I don't let my dd swim in the lakes etc. I know it does not garantee anything, she cultured pseudo twice (at 18mo and 3 y/o), it was so much stress and constraints for everybody that i found it just not worth it exposing her to places where pseudo is found in high numbers. For me it is just a trade off between not doing certain things and risking complications with irreversible consequences (like being colonised with pseudo)
CF affects each person differently. I have heard of severe cases at just a couple months old. Our CF dr told me recently that he just preformed a lung transplant on a 2 month old. My 5 year old has cultured pseodo the last 3 years in the month of June. It's the month that we start swimming. So after this past June we made the decision to not let her swim in a public pool any longer. The 3 times she cultured it, was from 3 different public pools. She loves swimming and I know it is good excercise, so we are now saving up to get our own pool. Our CF center is very aggressive in fighting pseodo, 2 rounds of Tobi, and then a 14 day hospital stay. It is not worth the extra treatments and possible hospital stay just so she can swim. As a parent you do what is best for child. I want to add years to her life, not take them. I let her enjoy life in so many other ways.
We swim in pools and do a lot of other "normal" activities, but she isn't allowed around a lot of smoke (down to me not burning candles in the house) because of the amount of lung issues/damage she has. There are occasionally exceptions, but as a rule we don't do lake swimming either. Piper was culturing pseudo at diagnosis, finally got rid of it (seemingly) and had been culturing mrsa and steno for 6 yrs. (Which may be masking the pseudo..lol.) We also avoid hot tubs and I'm a bit fastidious about the shower and such. Those are really the only restrictions I've put on her.