Friends/Family not taking childs CF seriously!!!

[anonymous]

Hello,
My son is almost five and he was just recently diagnossed with CF. The week after next he is going into the Hospital for his first scope and is going to be statred on IV antibiotics which he will then come home with for another two to three weeks. He has been sick since birth and I was always told he had severe asthma. Last February I insisted for a cat scan of his head and lungs and by March he was going into the hospital for his adnoids to be taken out and the ENT Doctor said I would like to test hime for CF while he is under.
Ever since then we have been through 3 sweats several blood test and finally in August he was diagnosed! I am a mess, and my husbands family thinks that I am making a bigger deal out of it than needs to be. One of there comments were well Jim works with a guy
and he's 5o some years old. She's not here when he coughs night after night and on and off all day long or running him to and from the Doctors. When were out in public people sometimes say he sounds like he should be in the hospital, like he has something really bad.
I worry all the time about everything, and how bad is he really and how long will he live? I hope that your daughter is doing okay. My son was just fitted for and started using the Vest, does your daughter use thisa also? This is all still so new to me.
I'd love to hear form you.
Karen
My son Logan is 4 and has CF

 

[anonymous]

My 8 year old daughter was diagnosed in August and it appears that she as a mild case (so far, knock on wood....). People constantly ask how she is doing. She is healthy and no one would ever know of her condition except that we have told them. I'm just getting tired of peolpe asking (I know they mean well) because they just don't understand. I finally came up with an analogy of how I feel about CF.

CF is like a bomb my daughter is carrying around. No, It hasn't exploded yet, but she is still running around holding this freaking bomb! Will it ever explode? Probably. When will it explode? Your guess is as good as mine.

So when people ask how she is doing I don't know whether to answer with my normal, "She is doing good" or tell them that she is Okay for now, but the bomb hasn't exploded yet! I just wish that they would do some research on their own to find out about CF if they truely are concerned!

Other people have been great. I have a friend that lives in Vegas and has offered babysitting services if we want to go there with our kids and get away for the weekend. She has done research online and has talked to her mom who is a nurse. She is even learning about Chest Physical Therapy so she can do it while were out!

 

[anonymous]

I really dislike getting comments like, he doesn?t look sick. Like we?re faking it. Depends on the situation and how ornery I?m feeling, but I?ll either drop the CF bomb and talk life expectancy and purposely make them feel bad, or just ignore the comments.

Or when I threw a total fit because we were at a family reunion and people started smoking around DS. Then there was some old biddy who went on and on about how she had asthma as a child and cured herself by smoking pot and suggested that maybe we try that. She also made a comment about DS being too high maintenance when she was at a family event and we slipped into the other room to do treatments. My MIL was talking about all we do to keep him healthy (she likes to brag) and this idiot thought she could get a laugh out of everyone. I just try to consider the source, but it still is upsetting at times.

 

[cfmomma]

I worked as a teacher in my son's preschool and would occasionally miss days because he was sick. My boss was VERY understanding but some of my co-workers were not. I walked in one day, after missing a few days, and walked by one of the classrooms and heard one of the other teachers slamming me, She said "Harrison's not sick, just look at him", "She's just using his disease to miss work" and many more nasty comments. I broke down, I was so horrified and shocked. I told her that I would do anything in the world to be faking his CF. I don't remember what else I said but I know I made her feel like crap!!

Blythe,
Who is your mother-in-law? I did sell a lot around Christmas and on ebay. Harrison saw Dr. Brown yesterday at his three month visit, Dr. Prestidge was busy. I love Margaret she has been wonderful, and Harrison has a crush on Daisy! He got his flu shot and was not a happy camper.

 

[anonymous]

I can really relate to what everyone is saying.
My son is 2 years old now and my husbands family just like to pretend that it doesn't exist.
I am so tired of them ignoring it that I have started avoiding family situations.
I am not asking for him to treated any different but it would be nice that it is acknowledged.
He is a very precious boy and like everyone else I always get the "but he looks like there's nothing wrong with him?"
My usual response is that you can't see the lungs from the outside can you?
I am not after sympathy but it is a lot of hard work keeping these kids healthy and it would be nice if family could at least realize it!
Rebekah
Mother to Matthew 2 years w/cf and Ella 6 months CF carrier

 

[aneta]

You se that is why me and my husband decided not to tell anyone outside our closest family that our children have cf. Most of all I do not whant anyone to pity my children .

 

[anonymous]

Pity is something that my son certainly doesn't get.
The only people that really know my son has CF are his direct relatives and very close friends.
But on the other hand I don't think it should be something to hide either.
I am talking specifically about close family.
Rebekah
Mother to Matt 2 years w/CF Ella 6 months CF Carrier

 

[aneta]

No I am sorry I was talking about coworkers and people outside of my family but I know what you are talking about.My inlaws are great they help as a great deal on a daily ba
sis but at the begining they thought that this is somthing they will grow out of and thet we are making a big deal out of nothing and if you think that is hard explaining about one child can you imagine two children especialy when the yongest is the only girl in the family and on top of thet cf is very sneaky deasese they can feel good, look good but they are still sick.

 

[anonymous]

You have my admiration.
I can't imagine having two with CF especially when they are both unwell or one is in hospital etc.
I have had many people ask me when Matt will grow out of CF!
I just educate them on what a genetic disease is and they usually tell me they feel a bit silly!
Unfortunately I think generally the only people that will ever know what is like are the ones that are in the same position as you.
Rebekah
Mother to Matt 2 years W/CF and Ella 6 months CF Carrier