cf children in the same school

[ashton2005]

Hey everyone, I was reading the post about cf children in the same school. Since we are fairly new at this what does going to the same school with another child have to do with their health??? We still have a while ashton is only 3 1/2 weeks old but this would be nice to know.


Christi
Ashton's mom 3 1/2 weeks with cf

 

[Emily65Roses]

Let me just start by saying whether or not your son socializes with other CFers is a personal decision your family should make together. The CF Foundation doesn't condone it anymore, and doctors will try to tell you not to. However, it has its benefits and to some (like myself), it's worth a little bit of risk. If you're worried about your child getting sick, maybe have him wear a mask and gloves when visiting another CFer. Something like that. Just give it some thought before you rule it out entirely, because the psychological aspect of seeing other CFers is VERY beneficial.

Now onto your question. CFers have a very nasty habit of sharing bugs. We are extremely prone to giving and getting any other lung bacteria that a CFer may have. Some of the most common bugs your child will surely get (eventually) anyway, like pseudomonas. That lives in way too many places to completely eradicate it and your son will get it sooner or later. Some of the more resilient bacteria are the ones that people are so paranoid about (like MRSA, or cepacia). If your child meets with another CF child and that child has cepacia (for instance), your son will be at a decent risk of getting the cepacia. Cepacia, being one of the nastiest bugs a CFer can get, is not something you want to be sharing. Because our lungs are so crappy, wet and warm, (bacteria's favorite type of environment) we just are very susceptible to giving our bugs to other CFers and getting the bugs they have.

 

[anonymous]

I just want to say Emily, I don't like the way you say "your son will get it sooner or later". I am 29 and still dont have pseudomonas. Maybe Iwill get it one day, but there is no definite fact that he WILL get it.

 

[anonymous]

To Anon poster that is 29, what are your current PFTs? Just curious if you are willing to share. I'm hoping they are still good.

 

[Emily65Roses]

All right then let me rephrase. People that have CF and actually present like they have CF are *more than likely* going to get pseudomonas sometime in their life. All I meant to say was that it's futile going to big measures to avoid it.

 

[anonymous]

37 - no Pseudomonas here.

 

[SeasonsOfLove]

My understanding of pseudomonas is that most people who are diagnosed in early childhood with CF culture pseudmonas before adulthood. I'm just curious as to when the two anonymous posters who are 29 and 37 and still don't culture it - when were you diagnosed with CF?

 

[julie]

Very rare that someone their ages, 29 and 37 WOULD NOT culture Pseudomonas. They are the EXCEPTION to the rule, not the rule itself.

To those two, you should consider yourselves very lucky and I am glad there has been no pseudomonas culture thusfar for both of you. I am curious though, do both of you have lung involvement with your CF?

To Ashtons mom:

As emily stated, the signifigance if two CFers in the same school is the ability for more bugs to be spread between two CFers, more risks if infection/cross contamination and such things. Of course, (and you'll hear this frequently on this site) there is no reason to keep a child in a bubble either. In the end, waht really matters most to the majorit of people? QUALITY of life, NOT QUANTITY of life. If QUALITY of life involves having another CFer for a friend, and it may cause cross contamination which could possibly (NOTE: POSSIBLY) shorten the QUANTITY of life, but laying on your death bed you can recall all of those memories that made your life worthwhile, versus laying on your death bed thinking about all the things you didn't do to preserve your QUANTITY of life, but you have so many regrets about things you didn't get to do.... which would you honestly have. I'd take the first, as would a good majority of people.

 

[JennifersHope]

Hi Kathy,

I am 33 and I don't culture pseduo. I have before but have been able to get rid of it... My bug is MRSA.... (I don't fool around).. My question to you is do you think younger ppl are culturing pseduo younger because they are getting it at clinic? I don't know if it is true or not.just wanted to know what you thought...

. Though I have had pneumonia 30 times now in my life, I don't have scarring in my lungs.. we think because I am on high doses of steroids.. I don't get any inflammation... but not sure.. anyway.. I have never cultured MRSA until I started going to a CF center.. My CF center said it is because my other hospital didn't do the cultures right.. I don't know..I don't know how these bugs work....

I think EMily if right.. ppl with the most common CF gene do culture pseudo eventually but I have some rare mutations and no one really knows what the course of my lungs is going to look like..right now if you look at my lungs they don't look like I Have CF but yet I am in the hospital for tune ups more then the average CFer... I had a friend who never really cultured anything, then picked up a non tb type bug and needed a transplant very quickly.

GO figure.... I would be curious as well to those ppl who don't culture pseduo how old they were when they were dx and what their gene types are.


Jennifer

 

[anonymous]

I am the 37 year old that has not cultured Pseudomonas. I was diagnosed at age 35 and I am double delta F508. I've been very thin all my life (could never gain no matter what I tried) and had problems with IBS since about age 25. Started having respiratory problems & recurrent pneumonia at 32-35 when I was diagnosed. I am not on any meds except enzymes and albuterol nebs as needed. Presently my FEV1 is 92% and I do not culture Pseudomonas - but, I do culture MRSA and that is probably due to my healthcare profession.

 

[miesl]

There is a nice chart in the 2004 CFF patient registry that looks at infection types and rates at various ages in the CF population.

For PA...
Age range - Percent infected.
0-5 - 30%
6-10 - 40%
11-17 - ~50%
18-44 - ~80%
45+ - 70-75%

Overall percent of patients infected with PA in 2004 - 57.4%

Data from the
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/publications/files/2004%20Patient%20Registry%20Report.pdf">2004 CFF patient registry </a>.

 

[JennifersHope]

To the 37 year older that doesn't culture Psedu..... You sound just like me...I am 33 and I don't culture it either.. I culture MRSA as well but I am in healthcare too...What age were you diagnoised at????

I was almost 30.. but was sick my whole life with a lot of resp problems.. they just never caught on..


Jennifer

 

[anonymous]

I was diagnosed at age 35. I started having respiratory problems around the age of 30 (shortness of air, exercise intolerance, etc) then began at age 32 with recurring bouts of bronchitis & pneumonia. Like my previous post states I have always been extremely thin and had gastrointestinal problems since my 20's. I consider the fact that I am 37 and have actually done so well for so long is a true blessing.

 

[anonymous]

Anonymous poster above,
Do you know what mutations you have?

 

[anonymous]

Double Delta F508

 

[Kaitsmom]

Ashton2005,

My daughter is 9 yrs. old and goes to school with another child, same age with CF. They are both 4th graders, they were in the same classroom in the 2nd grade and we had no problems, of course they did not sit next to eachother and when Kait is sick or just not feeling very well i do not send her to school. This school year the girls were scheduled to be in the same classroom but i did have the school change this. The other girl is very sick, her lung function has dropped greatly and she spent the entire summer in the hospital. At age 9 her Pft's are 50%, i am very open with her parents about what Kait cultures, pseudomonas and MRSA. , because i know that this can affect her daughter as well, unfortunatly her parents do not share with me the same information and i am OK with their decision and privacy but i also have to watch out and care for my daughter the best that i possibly can and do my very best to keep her precious little lungs healthy. The two girls are still friends but they know that they can get eachother very sick and it broke my heart to change my daughers classroom because she really likes the other child alot, but i can tell you that my daughter has great quality of life with CF, she goes camping, plays baseball, loves to swim and stays at her friends houses for sleepovers, she goes to amusement parks, and loves to be very active, my husband and I try to do alot with our children, and we do not let CF stop Kait from doing what she enjoys.

Kaitsmom<img src="i/expressions/rose.gif" border="0">