taking the preschool plunge...

[anonymous]

Hello,

My son w/cf is starting preschool in just a few short weeks. I'm having a hard time realizing that it's coming so soon, but I realize that it's really something that he needs socially. I've done my research and feel confident that his teacher will do all she can to help him with his needs. I just wanted to ask you experts if I've covered all my bases. Here is what I plan to tell his teacher:

Give her the CF and school pamphlet from the CF foundation

Explain enzymes, dosages, and when he needs them

Give her a larger than life bottle of anti-bacterial gel that should be used before snacks (and that other kids should use too)

Explain that I need to be contacted if there is another child in the class who might be ill.

Explain that my son may need the bathroom more than normal.

Am I missing anything?? He is so excited to finally be with other kids in a small class setting. It's his mom who is having a difficult time with the transition. Thanks for any suggestions! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[ButtonNO1]

i dont mean to sound funny but why anti bacterial gel and why do you need to be conntacted if another child is ill its just when i started pre school none of this was done with me and i was fine .but one thing i will stress dont let your sons teacher treat him any different from the other kids this happened to me she kept fussing and that is the worst thing she could do cos i get expecting the same tretment when i came home . but if your son is going to get a bug from some one else it cant really be avoided in my experience and dont worry i am sure he is going to love his first day at preschool good luck and best wishes from JO w/cf age 20

 

[anonymous]

I bet your son is so excited!!
I have to agree w/ Carey here, but I guess I'm a germ phobic.
I, too would make sure that my child's hands would be washed before eating anything.
You would not think that parents would send sick children there, but I'm sure it happens. It may be a good idea to remove him from the situation (another sick child w/ fever), but unfortunately, by the time you get the call, he's probably already been exposed.
It goes w/o saying that you can't keep the kids in a bubble & getting something here & there will help his immune system in later school years but w/ CF a common cold takes such a toll on us that I can understand you're wanting to shield him from this.
I would just do the best that you can & hand the rest over to God & trust in Him to take care of your son.
Just my 2cents worth<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi, It seems like you've covered all of your basis. When I first sent my daughter to preschool I was nervous too. She is now 6 and a half and I don't think she ever caught anything at school. I do point out to her when people are sick, especially coughing, and I let her know that it is better to keep her distance if possible. She is now very aware of people when they are ill, and she is cautious around them, (not hugging and kissing them.

 

[anonymous]

We are sending our daughter to pre-school for the first time this year as well, and of course we are a little nervous.....but she is so excited.
We are going to give the teachers pamphlets and hope for the best. I think we may print up little stickers on her snack and tell her whenever she sees the sticker it should remind her to wash her hands. We want her to take responsibility for taking care of herself, because you can't always rely on the adults.
Snacks at her school are fruits & veggies, due to peanut allergies. Becuase they've had a CF child before they realize that high fat diets are the norm and they gave us permission to have her bring something else. We do not want her to be treated any differently, and she stills needs fruits & veggies in her diet, so she will eat what the other kids do. The school does know that if anything else is served she will need her enzymes, but on a day-to-day basis she won't because of what she is eating.
I never told them she may go to the bathroom more than normal. When she has to go she will and I can't see anyone refusing to let her go...if they do they are in for a surprise
They have already asked parents not to send their kids to school when they are sick (for everyones sake), but I know it will happen. Again, we don't want her treated any differently so she will stay as long as the other kids do. I will explain to parents the health risks involved and then let them decide.
I am anticipating that she will get more colds this year than in the past but we don't want her to live in a bubble, so we are also taking the plunge.
Good luck on the first day of school. I believe we are making the right decision.
Heather

 

[anonymous]

Hi,
My daughter is going into Kindergarten and the program at her school has 2 years of pre-k, that she attended.
There are also a good pamphlets put out by Digestive Care inc and Axcan Scandipharm. Confusingly they are both called "Cystic Fibrosis in the Classroom" I give them both to the teachers in Rachel's class.
I also get a doctor's note for the enzymes.
Our school does the hand sanitizer thing anyway for the lower grades, since it makes it so much faster when they wash their hands. and they like it sop they do a better job.
The teachers (and usually the parents) always tell me when a child has been sent home sick. Just so I can watch out for something happening with Rachel, sometimes a heads up helps you avert a problem.
I explain the bathroom issues AND the possible gas issues when I discuss the digestion. after all they are tied in to eachother.
have you considered letting your child bring his own water to school? the water fountains in most places can harbor PA. Especially schools and hospitals.


I have a big list that I take in and go over with the teacher. If anyone is interested in a copy of it, I will e-mail it to you. E-mail me at JohnDrea@msn.com with your request because I don't always check this board since my baby was born........

Andrea

 

[AbsintheSorrow]

The teacher nd your own child can use the anti-bacterial gel, but really don't expect the other kids to use it, nor is it important. And if another kid had pneumonia or something, sure, I'd want to be contacted. But a cold will be good for your son to get. He needs to build an immune system.

 

[anonymous]

It's always so interesting to see the different reactions people have to these questions. We all have a similiar situation, but we think so differently. That's what makes it so nice to read all these responses. We can learn so much from each other. I have 2 daughters with CF...one is going into 4th grade and the other is starting Kindergarten this year. I was terrified when my older daughter started school. I was positive she would get deathly ill and I fet guilty for sending her. Now, 5 years later, I feel silly when I think of how I reacted. The child hasn't been sick (nothing worth mentioning anyway) since she started school. She was sick several times prior to school, but hasn't been since starting. I take the normal precautions (maybe more than normal to some people)... I mentioned the bathroom issue and that when she needs to go, it's in everyone's best interest if she is allowed to go right then. I didn't bring hand sanitizer, but I did mention to the teacher that I would appreciate hand washing reminders. Also, having been a preschool teacher for several years in the past, I know there is always that child with a constant cold and snotty nose and that I would appreciate if my daughter's desk was on the other side of the room. (don't mean to be harsh, but this is my child we're talking about) and the teachers have always been very cooperative with my wishes. And I never mentioned this to my daughter...only to the teacher in private. I don't want my daughter being taught to look down on people for any reason, but I still want to protect her. I don't think you should be totally stressed about your child starting school...I know it's hard not to, but it's really for nothing. It is good for them to have exposure to build up their immune system. If your child has never been exposed to other children on a regular basis, you may be in for some minor illnesses as the immune system builds up, but that has to happen at some point and I'm told that is's better at a younger age. Best of luck to you and your family. Here's to a healthy and happy school year for us all! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Opps....just forgot to sign my name to the above response...

Renee <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

Wow, I can't thank everyone enough for all of your great suggestions and support. It's always interesting (and good) to hear a variety of opinions and thoughts about CF in the classroom. I appreciated both input from parents and people with cf. I probably need to hear from you cf patients more as my child grows up! It's hard to stand in the child's shoes at times. From my standpoint, I just want to protect my kid. And with my son sort of "entering the real world" for the first time (i.e. school), I look at germs/sickness as a worry. I need to also remember that he needs to be treated like every other kid. So, thanks for the input from you cf patients on that note. The suggestions about a water bottle, pamphlets, gel, etc. were also very helpful! I appreciate you all! Best of luck for a happy and healthy school year. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[anonymous]

Carey

I know this is stressful for you & exciting for your child. I have two children with CF the only other thing I cover is; I discourage my kids from drinking from the drinking foundation, instead they take a bottle of the clear Gatorade with them to school. We live in a very hot climate (100* today) It keeps them away from the germs of the drinking fountion and encourages them to drink. Many children bring water bottles.

Farmfamily

 

[anonymous]

Thanks for suggestions about bringing my son's own water/gatorade! This is so smart and I hadn't given it any thought. I didn't realize that fountains could contain PA but it makes a lot of sense. I'm sure he'd drink more if he had his own gatorade. Farm family, if you don't mind me asking, where do you live that is so hot? We're planning to move to Las Vegas next year and I'm a little concerned about the heat of the summer there. Thanks again, Carey

 

[AbsintheSorrow]

Not a bad idea, but I will make a point that most new parents don't get, or don't want to get.... pseudomonas is EVERYWHERE. And eventually, yes, your kid will get it. There's no way to control this. No matter how hard you try. So take little precautions if you like, but don't avoid taking him to a public pool or whatever (some parents have said they do this), because that's taking away stuff he/she might enjoy because you want to save him/her from something that's impossible to avoid.

 

[anonymous]

True, Emily. PA is everywhere. However, if we KNOW that PA definitely exists some place more than others, it is our responsibility as a parent to protect our child as best we can from that danger. My son has cultured PA several times....and I know that it costs us literally thousands of dollars (we have a terrible Rx plan) and a lot of time and effort to try and erraticate it. I also know that my son's health goes down the tube when he cultures PA. So, why not take the time to prevent him being exposed to something that will potentially hurt his health and our emotional well being as a family? My son goes swimming all the time. He does almost every activity that other kids his age participate in. I appreciate your opinion as a CF patient, but maybe you don't see it from a parents' view point either. I have a responsibility to my son to protect him when I know that he may be exposed to something that may harm his health. If I can easily substitute a water bottle to avoid a water fountain, I'll do it in a heart beat. Just my 2 cents.

Carey

 

[EmilysMom]

Carey,
I think you missed Emily's point. She is not saying "Don't protect your child". What she is saying is "Don't put your kids in a closet just to keep them safe. She learned that from her parents. We have always taught her that we would not keep her in a closet just to protect her if it meant giving her a life that wasn't worth living. We have always allowed her to try anything she wanted to try (within safe standards of course) LOL !
Bur we wanted her to grow up living a life that was worth living and not always feeling like "I have to be careful because of my CF and this might make me sick".
Now granted, when she was born almost 21 years ago, and we were told when she was 2 days old that we had a 50/50 chance that she would see her 18th birthday, we wanted to put her in a bubble and keep her safe. But that was stupid and we came to realize that rather quickly. Looking at her now and looking back, I am rather glad we made the decision we made. She has grown into a wonderful, bright, beautiful young woman pursuing her college career and her life dream of teaching deaf children. GO EMILY!

 

[AbsintheSorrow]

I was going to put a reply, but my mom pretty much said it all. So yeah.

 

[AbsintheSorrow]

I lied. I'm going to reply. Haha. I might also point out, that I'm aware I'm not giving advice as a parent. I can't have my own kids, and as far as I know, there aren't any growing in my kneecap. But as far as raising a CF child, and not regular childcare junk, I honestly think I'll give you better advice than a non-CFer parent of a CF child. Just because these non-CFer parents have CF children doesn't mean they know much. Especially if they're new parents. I've lived with CF for coming closer to 21 years, and I usually know what I'm talking about. That's not to say I know everything, and you MUST take my advice. I just have to speak up when it sounds like parents are overbearing or trying to place their children in a bubble, because I HATE THAT!!!

Trying to protect your child from regular stuff works for me. I'm sure I'll do the same if I ever figure out a way to have kids. I just hate when parents basically try to put their kids in a closet so they won't contract anything ever. The one thing I have said repeatedly ont his forum.... is if you're trying to help your kids live an extra year or two... what's the point if they have to live these longer lives in a box?? I'd rather live a little bit of a shorter life that I enjoy, than an overprotected one that's maybe a tad bit longer. That's all. That's not to say you're overprotective or overbearing, I can only go by what I read here. And some of the things you said you wanted to do I found a bit odd and unreleastic.

Either way. I'm aware I'm not a parent, but let me ask you this.... If we're talking a non-CFer parent of a 10 month old with CF...... or me, I'd be very willing to bet I know more about living with CF, and even more about raising a child with CF than the new parent. That's all.

 

[anonymous]

Everyone makes good points. Parents want to protect their children no matter what. Kids just want to be kids too. So protect them as much as you can just don't put them in a bubble. I am not going to give any more advice (except this one piece) to parents since i am not one but I am a cf child (adult). Try an remember the more protective and strict you are and the more you put them in a bubble the more they will rebel when they are older. Kids especially teens that don't get to experience things their friends do or "normal" kids do have more problems with acceptance and depression. So they will act out. More likely to go get drunk and do drugs on the weekend to feel normal. More likely to get into trouble. Now given this can happen to anyone over protected or not given any boundries at all whatever. Some people just want to do those things just because. But I will gaunentee kids put in a bubble are more likely to try things (doesn't have to be drugs or alcohol) just because......just because they never got to before. I know your kids are young but you got to start somewhere. Just instill in them to be clean, wash hands try not to drink after others common sense stuff. You can't keep them away from people with colds and PA is everywhere even in the air...how do you disenfect air? Just teach them how to take care of themselves and thign will be alright. You don't have to keep them by your side all their life in a bubble to make sure they don't get sick. everyone gets sick cf or not. Not putting them in a bubble is best. Its quality of life not quantity. I know as parents you want your kdis around for the longest and want them to out live you. But do you want them to have a long life of boredom and white walls and gloves or do you want them to live it with fun and whatever makes them happy. Sounds kinda harsh how I put it but as a CF "kid" you see both sides of it. The over protectiveness is so much worse. Even if our lives are shortened by cf we still want to have fun and having fun doesn't have to mean at the expense of out health. You can protect your child as much as you can but if you can't protect them from everything and there is a point of over doing it. Anyway I hope something made sense.

 

[anonymous]

Very well said...all of you actually...we're all on different roads trying to reach the same destination. The adults with CF have obvious knowledge and experience that we don't have, and as parents we have knowledge and experience that people who don't have children can't possibly have. We all want the same thing...happy, well-rounded, healthy futures for ourselves and our children (with or without CF). Let's stick together and learn from each others points of view...we have so much to offer each other. Together we can come much closer to our goals than we can alone...Just my thoughts... <img src="i/expressions/face-icon-small-happy.gif" border="0">


Renee
mom of 2 girls w/cf
and 3 boys w/o cf

 

[anonymous]

Amen, Carey!

Point well made. I agree as a parent that we can't keep our kid in a bubble, but if we know we can take small steps to prevent health problems, why not do it? Your CF child will happier in the long run if he/she is healthy. If it's something as simple as a water bottle, then why not?

Tyler