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Old 04-23-2004, 02:07 PM   #1
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Unhappy New Here..Anyone with Teens having CF?

Hi:
I have a Niece & Nephew (14/15) both having CF since birth. The kids have been having many,many complications as of recently.Both developed insulin Diabetes last year. As of today both are in the Hospital...one for 4 weeks now due to a ruptured appendicts and one for an intestinenal blockage for 5 days now. Any-one know anything about mucous blockages stemming fom the pancreas? She was supposed to be scoped today and still hasnt been...they have her on morphine for pain. I am really scared. My Nephew was on IV antibiotics for the past 4 weeks to get the poison out of his system and is scheduled for surgery next week. They both are on The Make A Wish Foundation List and My Nephew is on a heart/ lung transplant list. My Poor Sister has been in denial for years and now its hitting home. I dont mean to sound negative but...I dont think these two have long. I am really scared and need some advice to help my Sister and her family through. Thank You! Kim

 
Old 05-13-2004, 10:04 PM   #2
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Angry Re: New Here..Anyone with Teens having CF?

I have read your post over and over again, wanting to reply. Are they okay? I am new to the site. I have a 4 yr old recently diagnosed and his 12 yr old brother may have it as well. Life is so unfair.

 
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Old 05-15-2004, 04:39 AM   #3
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Re: New Here..Anyone with Teens having CF?

Hi Nancy:
These kids were both diagnosed at birth and have always been sickly.I would have to say the past two years have been the worst with them both developing diabetes and being hospitalized numerous times. They have excellent Doctors and very good spirits but like you said "Life is not fair" It is very frustrating to watch my family fall apart. All we can do is live each day to its fullest. I wish you very much luck with your sons. God Bless Them. Be strong and be there and you all will find a way to get through this.((Hugs)) Kim

 
Old 05-29-2004, 04:24 AM   #4
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Re: New Here..Anyone with Teens having CF?

Kimmer my prayers are with you and your family. I know first hand how hard it is to deal with the sicknesses and the fear of is this the one. I wish there was more I could say or do to help but all I can do is to pray for you all. Wishing for the best God bless you. Carol

Last edited by CBryant; 05-29-2004 at 04:25 AM.

 
Old 05-29-2004, 04:31 AM   #5
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Re: New Here..Anyone with Teens having CF?

Thank you Carol.My poor sister is outta her mind with worry...she recently learned her oldest son is being sent to Iraq next week on top of the kids being sick with CF...too much to worry about.Kim

 
Old 05-29-2004, 04:45 AM   #6
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Re: New Here..Anyone with Teens having CF?

Wow Kim you all do have a full plate there, this april my nephew was sent to Afganastan (excuse the spelling of that) Has the kids condition aproved any. And you spoke of the Make a wish Foundation they are great folks we went to Orlando in Aug. 2003 to the Give the Kids the World Villa and we did the whole theme park package My daughter ever evening before laying down to sleep would say "mom today was the best day of my life" I hope all works out well with you all.

 
Old 05-29-2004, 09:49 PM   #7
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Re: New Here..Anyone with Teens having CF?

I don't know what to say. Denial is almost just as bad as the disease itself. We have two children with CF (13 & 15) and know what you are going through. I looked at our situation like we were the luckiest parents in the world. We feel so lucky that we can be the type of parents that stay on top of the disease on behalf of our children. We see a lot of parents that stay in denial for years and they wait to long to be serious about it. God gave us these children so we can fight for them and all the other children and adults with CF. We fight to stop the smoking in the lobbys of WalMart. We fight to stop the smoking in front of the entrances to the hospitals and doctors offices. We fight with Social Security because the kids need extra benifits to help cover the cost for the extra food and medicines. We fight for further stem cell research so our kids can be a benifactor of the research. We fight to make people aware that the CF kids and adults need to stay clear of roaches, wallpaper, sprays, public pools, pet dander, and most important, second hand smoke.
I feel for you as much as anyone can. I have learned that if you find yourself with no place to turn to for relief, try praying. Don't give up. Ever. You may be the one that can make the difference for your family and others. If your sister is just now facing the reality of CF, you will need to help her catch up with what's going on as far as medications and support groups. It's never too late to start over. We seem to have to do it all the time.
I know talk is cheap but it's up to us to stay strong for the kids. There is a reason God is making us go through all of this but we may not know what it is until we go through those gates of heaven. God Bless You and Your Family.

 
Old 05-30-2004, 06:28 AM   #8
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Re: New Here..Anyone with Teens having CF?

First of all GOD BLESS you and your family Kimmers my prayers are with you.

Mr lucky in your post you mentioned "We fight to make people aware that the CF kids and adults need to stay clear of roaches, wallpaper, sprays, public pools, pet dander, "
can you tell me more about this. I'm almost ashame to say my daughter is a cat owner but they do not stay in our house. I'm also curriuos about the rest because I know my daughter is exposed to these ellements daily at her school.
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Old 05-30-2004, 10:14 PM   #9
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Re: New Here..Anyone with Teens having CF?

School. That's a whole new challenge there. Grade school isn't bad because the teachers have more control of the other kids in class and you usually don't have to worry about the kids smoking cigarettes while waiting for the bus in the morning. In high school, it's not as easy. Not only do the kids smoke near or on the bus sometimes but they also try to light up in the bathrooms. This was my daughters freshman year and it's been a fight all year long. She knows that she is highly allergic to cigarette smoke and can't go to the bathroom at the school because of all the kids sneeking smokes in there. Which, in turn, mess's up her stomach and causes her to have to go through some bad pain until she gets home or has to call home for me to pick her up.
Our two children were diagnosed with CF 10 years ago. My daughter was in and out of the hospital 3-4 time a year. I was a smoker but thought if I didn't smoke at home or in the car it wouldn't effect my kids and the amount of times they have to go in to the hospital each year. I realy regret believing that now. I finally was able to quit smoking 3 1/2 years ago and believe it or not, the kids haven't been in for a tune up since. They have been sick, but it seems like they are healthier now.
OK. About the other things. Please don't think that I am saying that I know it all because I don't. A lot of things just came to me as common sence. I will give you a list of things that seems to have helped our kids get through some of the rough days/weeks.
1) Pulmizime- The CF docs wanted to make my daughter go through sinus surgery because they said she had a severe case of sinusitus and it would cause more damage to her lungs As her parent, I decided not to make her go through the operation yet and tried something pretty simple. I figured that if Pulmizime could turn mucus into water than maybe it could clear my daughters sinuses. So I changed the way she inhaled her pulmizime from the mouth piece to the mask that covers the mouth and nose. That was about 5 years ago and at her last sinus check up, she still had no sign of the sinus disease that the doctors said she had years ago. Try it if this is an issue for you.
2) When my kids start catching a cold, flu, or a lung infection there didn't seem like there was much for us to do but let it do it's damage to the bacteria that is already in their throats and lungs. Although their blood oxygen was in the upper 90's I would put them on oxygen for 2-6 hours at the beginning just so they don't irritate all that bacteria in their throats. I guess the oxygen keeps the throat cool.
3) Mold and wallpaper. The mold is behind the wallpaper most of the time and the fact is that it's almost impossible to get rid of once you get it. There are several filters out now that will help keep the mold count down but it has to have a Hepa filter. The one that I have has an ionizer also and it really makes a difference.
4) Roaches spray out a chemical that irritates the lungs and can kick off asthma attacks real easy.
5) Pet dander: We have 2 dogs. A german shepherd and a border collie so you know there is hair. There has never been a problem with dogs but we had to stop visiting a relative because they had two cats. Within 5 miutes of walking into the house, both of the kids would start caughing so badly that I would have to leave and throw them back on the oxygen just to sooth their throats.
I hope some of these hints might help others out there. CF is a tough disease to deal with and I understand how frustrating it can be to handle. Especially at the beginning.
God Bless everyone out there that is trying to make a better life for a CF person or a family member.

 
Old 05-31-2004, 03:34 AM   #10
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Re: New Here..Anyone with Teens having CF?

Thanks Mr lucky for the advise. I'm glad you posted this I was about to do something that would had been stupid for me to do today and didn't know it .

Last night I had an encounter with a very big spider, I live in the mountains and they are comman; so anyhow I was going to have my house sprayed but I guess I'll try tiojust keep a fly swatter close by instead.
Thanks for the info.
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Old 06-01-2004, 08:15 AM   #11
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Re: New Here..Anyone with Teens having CF?

I've heard that CF kids need to be kept away from hot tubs (jacuzzis) 'cuz of the risk of pseudamonas, but recently I'd read an article about how someone's kids could swim at a public pool, but had to avoid hot tubs & ponds. So now I'm wondering if we need to avoid letting ds swim in the lake? He's only a year old right now and we're ever vigilant -- but my outlaws have a vacation home at the lakes and I know this is going to come up eventually.

 
Old 06-16-2004, 11:28 AM   #12
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Re: New Here..Anyone with Teens having CF?

Hi, I am relatively new to this site, but after reading ya'lls posts I wanted to add somethings. I am 21, almost 22 (1 month), I have CF and was diagnosed on my first birthday. I also have CF related diabetes. I was reading the comments on things that cf patients should stay clear of and I agree to some extent. I have always had a problem with smoke of any kind, and I stay away from hot tubs and saunas, not necessarily because of germs, but because I find it hard to breathe with the heat. As far as pet dander, I have 4 cats and my boyfriend has a dog, I don't have problems around either. I am currently attendng college and don't have a problem there either. During the flu season I sometimes catch colds that put me in the hospital, but I could get colds/germs from people at school or at the grocery store. I swim in public pools and dont have a problem, some chemicals bother me but if I am cleaning anything I turn on fans and open windows and I usually don't have a problem. I just wanted to write this because I think that taking precautions is a good thing but I think that a big reason I have stayed relatively healthy (I go in the hospital maybe 1 time a year) is because I wasn't kept from doing these things or being around these things as silly as that sounds. My body has adjusted to things, even though I am more prone to infections than the average person. Also cystic fibrosis is different in every person, and there may be other problems(allergies and such) that change how certain things affect 1 person versus another. Every case is unique and some things may help some people and in others it may not make a difference, good or bad. Well I will stop babbling I just wanted you all to hear from someone with CF in regards to how pet dander, public pools, sprays/cleaning chemicals, roaches and so on affected me. Thanks for reading. Best wishes to all and take care.

 
Old 06-16-2004, 01:20 PM   #13
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Re: New Here..Anyone with Teens having CF?

Thank you for your post. I had indeed heard to be wary of whirpools. I didn't know if that applied also to bathroom tubs w/ jets?? I also frequent a lake in NC that is surrounded by nothing but swampland. The lake is nice because it is shallow but it is murky in color because of the decaying plant material in the area. I don't want to limit my child because of her CF but I don't want to put her in any harmful situation either. We recently pulled up all the mulch in the playground in our yard because it was growing a lot of mold. We switched to a new product called rubber mulch and it really does look like mulch. Another thing, I think my daughter sweats a lot. The doc says CF has nothing to do with that, only with the salt content in the sweat. My daughter takes gymnastics and loves it! When she gets bigger, we may get a trampoline for the yard.

 
Old 06-16-2004, 01:45 PM   #14
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Re: New Here..Anyone with Teens having CF?

My brother was born with CF and I know as a teenager he not only had his physical problems to deal with but a host of emotional ones as well. You're just dealing with so much as a teenager anyway and by the time a CF kid gets to that point, they've already been through more than most of the kids in their age group. And and to look at all your friends and their seeming carefree lifestlyle, on top of all the emotional challenges that come naturally to a teenager can be very hard for a CF teen. I know it was for my bro. We were all just there for him as much as we could be, tried to listen to him when he wanted to talk and always always tried to remember that deep in his psyche there was a place he had to go to that we never did....It's all about the love.....the love will always be there no matter what happens.

 
Old 06-16-2004, 02:20 PM   #15
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Re: New Here..Anyone with Teens having CF?

I'd heard to avoid hot tubs 'cuz of pseudamonas. We have an outdoor hot tub and I can see why there'd be a risk 'cuz when it gets really really cold, we don't tend to use it as often and sometimes the chemical give out and the water gets a bit murky. However, we would never ever dream of letting ds use the hot tub 'cuz of the pseudamonas risk and we're talking about getting rid of it all together.

We were wondering about starting swimming lessons. We found out the local pool has a class two nights a week for 1 and 2 year olds. We asked DS regular doctor, who told us to call the pulmonolgist, who I can't stand. When I first met this man he told me that we shouldn't really have to do CPT yet because DS doesn't have any lung problems yet and besides -- the medical field has made great strides in Lung Transplants. Grrr! He thinks DS should stay at home instead of going to day care and I'm sure his response will be that swimming pools are "verry verry bad."

On a side note -- ds sweats quite a bit too -- we refer to him as our little salty boy!

Last edited by Ratatosk; 06-16-2004 at 02:23 PM.

 
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