Question to all

[ron72180]

Hello,
I am a college student in Westchester, NY. I am taking a health studies course and my project is on CF. Now I have found a great deal of information regarding the illness throgh the site already, but I may need some more, somewhat personal information. For one I actually have a cousin who is 3 years old and has the illness. I was able to get a great deal of info from my family regarding his case, but Im sure everyone else's case is different. Some of the questions I have are:
~What are some of the treatments that you or the person in your life with CF currently taking
~What are some of the things that you and your families have had to plan for in the future. Like what practical tasks do you now think about
~Also, in your areas, are there any community services or anything of that nature that are available to you to help

If this seems odd to some then I am sorry, but I am very serious. As stated I have interviewed a family member with it, but I know different people have different situations. Any help would be truly great. Thank you so much for your time and co-operation.

Ron

 

[anonymous]

Hi Ron,

My 3 year old daughter has CF. Currently her medications are a vitamin (ADEKs), previcid, enzymes with each meal and a breathing treatment of pulmicort daily. We have other meds as needed. As for your question on making future plans, we just enjoy each day. We have made some modifications to our house, like replace the wood stove with a gas stove and installed a central vaccume. We are also limited on where we can move becasue we want to stay within a 11/2 hour drive time to a CF clinic. I was planning to stay at home with our child anyway so her having CF just gave us more of a reason for me to stay home and care for her. As for services, there are no services in our community specific to her having CF. She had surgery when she was first born and had some issues with developing gross motor skills so she was enrolled in a program that provided physical therapy for a year. Now her pulmologist does not want her to go to preschool so she is enrolled in a Head Start program were the teacher comes to our home one day a week for 2 hours and works with her to make sure I am doing everything correctly to get her ready for Kindergarden. I have to run, but if you have additonal questions you can email directly. newmansconsulting@comcast.net

Good luck with your report and I hope your cousin is doing well. Jana

 

[anonymous]

My daughter is almost 2.5 years old with CF

~What are some of the treatments that you or the person in your life with CF currently taking
Vest - 30 mins per day
Enzymes
vitamins

~What are some of the things that you and your families have had to plan for in the future. Like what practical tasks do you now think about
We have started a medical savings account (like a trust fund) to help with any possible large medical expenses we may have in the future. We also have a plan to help her cover any large expenses she may have while in college and starting out life on her own. Our life insurance policy/will will soon include a plan that covers this too. We also have begun thinking about ways to help encourage her to be physically active (such as my husband has started enjoying running in races for fun and plans to have her run in the kids races when she is old enough - 4 years & she also participates in Toddlers in Motion classes). Basically, we just plan on enjoying our lives and will make the most out of whatever we are given but will try to be as prepared for whatever comes our way as much as we can!

~Also, in your areas, are there any community services or anything of that nature that are available to you to help
Hmmm, I am not really sure what you are meaning here but what comes to mind is our local chapter of the CFF (Cystic Fibrosis Foundation) - I got hooked up with them a little less than a year after my daughter was diagnosed and they are a great resource - mainly because they are a group of positve people (parents, grandparents, people with CF, friends, etc) who are focused on beating this disease...like me!

Hope this helps you!

 

[anonymous]

Hi Ron

My 4 year old has Cf, he was diagnosed when I was 7 months pregnant. He had a ruptured bowel which requred a 4 hour surgery at 6 hours old. He then was left with a stoma bag and a J-tube for feedings. After 2 months of not thriving he was reconnected, we about lost him after this surgery. He then bounced back and after a total of 77 days in the hospital was able to go home for the first time. He did catch the pseudomonis bug while in the hospital at 2 months. Since then he has had a 10 day clean out and a 2 week clean out with the 3rd week being home on IV. When he was 2 months old he also had a med port put in his uppr left hand chest, which he just had replaced in April 2005. He has had several bouts with bowel obstructions which normally happens about 3 times a year. He then takes extra laxatives, can't eat, vomits, and is in severe pain and then we have to do the enemas- sometimes up to 4 a day.

His current medications are these:

4 breathing treatments a day with albuterol and broncho saline, 2 of the treatments we do the percussion by hand for 20 minutes and the other 2 treatments he uses his vest for 20 minutes.

After his first morning breathing treatment at 7:30 a.m. and his vest he has another aerosal of Pulmozyme.

After his second breathing treatment and his percussion at 11:30 a..m. he has a different aerosal of Pulmicort

His third breathing treatment at 3:30 p.m. -4:00 p.m. is with the percussion

and his fourth breathing treatment at about 9:00 p.m. he uses the vest and then has the pulmicort again.

He has always been on 4 B.T.'s (breathing treatments) a day. When he is sick with a cold we up them to every 3 hours a day around the clock. Sometimes that feels like that is all you get done.

So as far as breathing medications he is on albuterol, pulmicort, and pulmozyme


He is on ADEK's vitamin, an extra 400 I.U.'s of vitamin E a day, Prilosec, Lactulose( for the bowels), Miralax (for the bowels), Creon 20 and Creon 5 enzymes with every meal & snack, Flonase (he now has a nose poylup which they are saying will probably need surgery), he has been on all of these for approximately over 2 years now. I just picked up a copy of his medicationl ist dating January 1, 2005 to October 20, 2005 and he has spent $18,500.00 in medicines alone. That is not counting hospital medications, nebulizers, masks, and port flush supplies. My husband & I do his port flush bi-monthly and his CF clinic does it bi-monthly. So they see him every other month, they are 2 hours one way from us.

As far as planning in the future, we don't think of him any different than our other 3 children. We plan on him attending college and being someone brillant, we always say he could be anything he wanted to be, he could be an actor, comedian, doctor ( he knows alot about that), singer, or whatever. He is good at everything and is only 4 years old. I think alot of that is because of the B'T's and all the time we have at that time to teach hom things.

I am a committee member for the Great Strides walk which raises money for research and a CURE for CF, we do this every year. Sometimes you feel like you are all alone with this disease because no one really knows what is it like unless you have a child with the disease. I wish there was more awareness.

I hope this helps,

Angie
Step Mom to Brittany 13 no cf
Mom to Tyler no cf but a cf carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf but has a deletion of chromosome 9q 21.2 q 22.1

 

[HollyCatheryn]

What am I taking?Reliv nutritional supplements (1 scoop Now 2xday, 1 scoop Innergize 2xday, 1/2 scoop Fibrestore 1xday, 1/2 scoop Provantage 1xday)Albuterol aerosols (2xday)Tobi aerosols (2xday, one month course)Pulmozyme aerosols (1xday)Ultrase MT20 (3 w/ meals, 1-2 w/ snacks)Prevacid (2xday)30-40 minutes Vest treatments (2xday)30 minutes lap swimming (four days a week)What plans have we made for the future?All the therapies I do are aimed at the future. Swimming especially. I know it has the power to slow my lung deterioration and maximize my current capacity. I also know that the stronger the rest of my body is, the better I'll hold up under stress. I am married and have a 3-year-old daughter. So, that is a plan for the future. I plan to grow old with my husband and see my daughter have all 8-12 of her children <img src="i/expressions/face-icon-small-smile.gif" border="0">. My husband is finishing up grad school. That was something that we chose to do partly because of my CF. We knew he'd have a better ability to support our family on one income and give us the $ and insurance we'd need for my health issues if he got this degree. Some of the parenting and homemaking choices I've made have been influenced by CF. I simplify my house and schedule. My daughter is a wonderful, skilled helper at almost all household tasks and gardening. We minimize outside activities so we have more time together and more freedom to rest or work depending on what I/we need. I am currently running an educational website for adults with CF and our caregivers. That is not just for my future, but for others'.Area community involvement?I've attended several of the CF support group meetings that my clinic has held. I also attended the Sure Shot For Life (<A href="http://www.sureshotforlife.com">www.sureshotforlife.com</A>) fundraiser last weekend and helped out. Many adults with CF have found a community in the internet. I get and give support here and through my website (<A href="http://www.geocities.com/MurrensNatureMama">www.geocities.com/MurrensNatureMama</A>). I answer a lot of emails from families affected by CF. I also write articles occassionally for the CF Roundtable (<A href="http://www.cfroundtable.com">www.cfroundtable.com</A>).Feel free to email (<A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A>) with any other questions?

 

[ron72180]

Hey everyone....I just wanted to say thank you for all the information you provided for me. I posted the question on many forums through this site and everyone has been very very helpful. I presented the project tonight and it went well. Thanks to everyones input on here I was able to answer many questions with ease. Thank you so much again!!!