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Thread: How...?

  1. #1
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    How...?

    My son is 7, he attends private school. His CF is progressing and I need to shield him from the winter cold/flu/virus pool as much as possible. How can I approach letting his peers/classmate parents know he has CF and could they think twice about sending their kids to school with a non allergy caugh, colored mucus or a low grade fever. I fully understand that parents have work and often can't take time off. I wonder if a simple "carefully" crafted note to his classmates parents should be distributed about sending their child to class sick or to ask their child to shield their cough/sneeze from my son. The balance is finding a way to protect my sons lungs while not putting people off and worse yet...having kids be instructed to stay away from my son. Any advice is much appreciated 8^)

  2. #2
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    When I was little, my teacher would actually just call my grandmother to come pick me up, when she noticed other kids showing sick like symptoms.
    Can't take care of and watch out for everyone else, so accommodate by watching out for yourself instead.

  3. #3
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    Is there a school newsletter or would the teacher be willing to send a note home with students?

    When DS was in kindergarten, it was the year the H1N1 flu was going around and vaccine was limited. So the school was already trying to enforce their sick child policy; however, several parents would dose their kids with fever reducer and about 1 pm they'd spike a fever again.

    DS' teacher asked if she could send out a letter reminding parents that there are CHILDREN (so as not to single out ds) with health issues in the classroom that could be become seriously ill, possibly hospitalized should they be exposed to certain germs.

    I know ds is going to get exposed to colds, etc. I also encourage HIM to be proactive with hand washing, avoiding touching his face...
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  4. #4
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    Is there a way that you can keep your son from school when he is coughing. We all know that CF is not contagious but we all spread the same germs that you are so concerned about. When your son coughs, he spreads them also. Will you be sending son to school when he has a "non allergy cough, colored mucus or a low grade fever?" Or are these rules just to protect your son.

    You said that this is a PRIVATE SCHOOL so every student is paying for the right to attend EVERY CLASS. If you send the letter, as you are suggesting, you won't have to worry about other students being near your son, in fact he will be alone through high school.

    Before some moms decide that I'm not SUPPORTING you, I will state that your suggestion is unreasonable. Now, MOMS, report me.

    Bill
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  5. #5
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    SJO:

    It is reasonable for a Mom to protect her child in the family enviroment. The problem occures when we venture out into the real world. The population of the United States is in excess of 311.6 million people. The CF population in the US is about 30,000 people (you can do the math).

    Many years ago, I had to stop attending live theater because of my coughing. The same is somewhat true for movies. In short, we have to accominate the world, not the reverse.

    Bill
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  6. #6
    I actually agree with Bill. I'd say you need to work with your child about washing hands more, touching face less, etc. Your child will always be around those with colds, coughs, etc and if they learn when they are young to try to minimize contact, wash hands, etc it can be a good lesson for life. You can't put your child in a bubble, as much as you'd like to sometime. Those little letters make more problems in the long run, singling them out as a CF kid, rather than just a kid that happens to have CF. You can talk with the teachers and staff about encouraging more hand washing, but that's about it. You can't ask for others to not send their kids to school (especially in private schools) while yours is also coughing throughout the year (or will probably be as they get older).

    Talk to your doctors about getting the flu shot for your child and your whole family, eat more fruits & veggies, drink more liquids, wash hands more often and you'll make it through the cold season.

  7. #7
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    I appreciate the feedback very much. It has helped me to look at this situation from varying viewpoints....something that is always good to explore. I will say however....feedback delivered with a kind tone is much more effective than that in a harsh tone. All good feedback to have on this CF journey with my sweet, amazing and inspiring son. Thank you!!

  8. #8
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    SJO, I can't help but to weigh in on this topic because I strongly relate to your concerns for your son. I have two daughters with CF (now 19 and 13 years old). For years, one or both get colds/respiratory viruses every Fall from school (or the store ... or friends ... or whatever), and those colds have many times led to CF exacerbations and hospitalizations (please know that my girls have had many hospitalizations and a cold won't necessarily cause your son to get that sick). My experience with trying to improve the classroom health environment (in both public and private schools, btw) was spotty at best. I agree that it would help a lot for your family to get flu shots and for your son to learn to wash hands/use sanitizing wipes/gel before meals, keep hands off face, etc., but you can also ask your son's teachers to move him away from kids who have an active cough, runny nose (not to move the sick kid ... political correctness and all). Protection from droplet transmission (coughing/sneezing) is a minimum of 3 feet away.

    The reality of even this request is that noticing sick kids is not on most teachers' radar, even when they say they will keep an eye out for it, because they really don't understand CF. A great resource is CFRI's "CF in the Classroom" booklet that you can order, get from your CF Care Center, or better yet download the PDF and print out for the school. For me, sitting down with the teachers to explain how CF affects your child and what they can do to help seemed to sink in better with the teachers than a note. Still, they are all very busy and snotty-nosed kids and coughing are so routine that teachers don't notice what is alarming to us CF moms . As they got older, my girls would sometimes discretely ask to be moved if needed, learning to advocate for themselves.

    Based on how comfortable you and your child are, I highly recommend that you go into the classroom and talk to the kids. I did this when my younger daughter started a new school in the 3rd grade. I created a short talk that involved the class. We practiced saying "65 Roses" so they knew how to say Cystic Fibrosis; I covered that CF is: something my daughter was born with; they couldn't catch it (very important); it won't go away/can't be fixed yet (but there are great medicines she can take that help a lot); etc. Told them she might have to go into the hospital sometimes and what that's like (I kept this very light). The best part was discussing what they could all do to "help" my daughter—stay away if you're sick; cough into your elbow; wash, wash, WASH! etc., but mostly to be her friend and to pray for her. I also went into my older daughter's high school class and had a more age-appropriate conversation with them, but that's a looooong way away for you!

    The bottom line for me is, as much as I (still) want to put my kids in a protective bubble, I can't, and I'd rather that they are out in the world doing life as normally as possible. I think most people do care and want to help if they understand, but that understanding needs to include the fact that my daughters (and your son) are still normal kids who do normal things and have normal wishes and dreams ... they just need a little more help with CF.

    Best to you as you advocate for your son. You're a great mom!

    P.S. if you want to know more about the class discussion I had, PM me. I might still have the materials I used.

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