Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 , Welcome to the list. I think you will like us. I kind of feel the same way about the Cystic-L list. I'm not really in denial but I also don't feel a need to read about everything every day. On this list you can get answers to all of your questions, and read about what other parents are doing to treat their children. It's pretty low key and usually fun too. There are several people who have children with a late diagnosis like Randy Jr. I have three children; my youngest has CF. Her name is Mycah and she is three and doing great. ( I have a six-year-old son and a 20-year-old daughter, both with no CF). Mycah has lung and digestive involvement, though mostly digestive at this point. The enzymes she is on take care of most of the malabsorption problems and I guess the inhaled medications are keeping her lungs pretty healthy. What meds is Randy Jr. on? Hope to hear more from you. Lori in Florida New > Hello everyone, > I signed up with this list last night so I thought I would introduce us > today. My son Randy Jr. was diagnosed last year around this time and he is > now 6 years old. When we first found out, the doctors told us to go and > find out everything there is to know about CF that we could. I joined > Cystic-L and after about a month, I left the list. I could not handle what > I was reading. This was all too much for me, I mean, I didnt even know what > CF was. I have heard about it, but never paid attention because it didnt > pertain to me. So basically what I am trying to say is I got really scared, > and just wanted to shut the world out and fake like everything is ok. Of > course it wasn't OK because before we knew it Randy was in the hospital for > two weeks for one of those 'tune ups'. Anyway, I can go on forever talking > about our experiences but what I really want to say is we are doing better > facing the horrible truths about this disease although I still find myself > crying buckets alot. Hopefully through this list my husband and I can find > people who feel as we do, also maybe learn more and build strong freindships > with you. > > Thank you for listening > > Thigpen > Randy Sr. > Randy Jr.-6 (wcf) > Sakari-4 > Madison-1 > > drsmrt@... > nenee@... > http://kickme.to/nenee > > > ------------------------------------------------------------------------ > Experience MSN... > Get 1 FREE* month of unlimited Internet access! > http://click./1/6323/8/_/480698/_/963680712/ > ------------------------------------------------------------------------ > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 Hi , Welcome to the list. My son is now 6 months old. We found out he had CF when he was 3 months old. It was the hardest time in my life. Finding out your only child is sick with a genetic disease was devastating. Like you, the first thing I did was join Cystic L. Boy that was a scary experience. I was reading things that I couldn't deal with, let alone think would/could happen to my little baby. It was horrible reading about lung transplants, etc. My husband finally persuaded me to sign off of that list, and I found this one. :-) Much better! The parents here are very understanding and have young children like myself. Their outlook is very positive. Thank g-d Jake has been doing very well. Half the things the parents' talk about I don't know of, and I'm just learning about. Jake's on enzymes, zantac, and soon Pulmozyme (we also just started giving him some small doses of NAC, glutathione, and DHA). He is gaining weight steadily, though behind a little. (the first 3 months of life, he hardly gained) At 6 months, he weighs 14 1/2 lbs. About 1 lb under what he should be. Times get really hard when I think about my little Jake's future. But I have to have hope that he will live a long and productive life. All these new medical advances are my only hope. I hope your son is doing well. Please feel free to write whenever. Where are you from? We live in Plantation Florida. Bye, Cheryl Mom to Jake 6 months w/ CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 WONDERFUL. I am sure will will be able to do that here. The other CF lists are also wonderful , even if you just lurk for awhile.In time, you will know what is being dicussed and not quite as frightened. In fact , you will be able to comfort another who is new and feels like you felt.-- sparing them a longer frightful time. Bless you for your desire to help your precious little one. My granddaughter is now about to be 16...she is great and doing VERY well health-wise. We also hope this will be so. I'll look forward to your sharing in future posts. LOVE & HUGS, grandmomBEV New Hello everyone, I signed up with this list last night so I thought I would introduce us today. My son Randy Jr. was diagnosed last year around this time and he is now 6 years old. When we first found out, the doctors told us to go and find out everything there is to know about CF that we could. I joined Cystic-L and after about a month, I left the list. I could not handle what I was reading. This was all too much for me, I mean, I didnt even know what CF was. I have heard about it, but never paid attention because it didnt pertain to me. So basically what I am trying to say is I got really scared, and just wanted to shut the world out and fake like everything is ok. Of course it wasn't OK because before we knew it Randy was in the hospital for two weeks for one of those 'tune ups'. Anyway, I can go on forever talking about our experiences but what I really want to say is we are doing better facing the horrible truths about this disease although I still find myself crying buckets alot. Hopefully through this list my husband and I can find people who feel as we do, also maybe learn more and build strong freindships with you. Thank you for listening Thigpen Randy Sr. Randy Jr.-6 (wcf) Sakari-4 Madison-1 drsmrt@... nenee@... http://kickme.to/nenee ------------------------------------------------------------------------ Experience MSN... Get 1 FREE* month of unlimited Internet access! http://click./1/6323/8/_/480698/_/963680712/ ------------------------------------------------------------------------ *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 Welcome Meg Mom of Maureen 91/2yowcf & Katy 5yowocf & Baby due 10/00 ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 , How old is your son? What symptoms does your son have? These drugs aren't necessarily given to most young CFers - Zyrtec, Zantac, Flonase, Flovent. some of those might be to help his enzymes work better if that has been a problem and some sound like they are for allergies. Has he had those problems? On the DNA map the thing I see as a benefit is the possibility that they will be able to pin down some of the other factors that predict if lung involvement will be early or later. They have already discovered one such factor and I am sure there are more. If they can do that then there might be some other treatments that come from that. They discovered the CF gene over 10 years ago. Good luck. Lori mom to Scout 21 mo wCF Re: New > First I would like to say thank you to everyone for that wonderful welcome. > I have been on many emailing lists and this one is definitely the nicest > bunch of people I have seen so far. > > I am sorry it took so long for me to get back with you all, I have a hard > time making it to my computer everyday and checking email (finally almost > finished!!) I did subscribe to Cystic-L but I will only read the subject > lines dont sound so negative or sad. I have so many questions for you all > but I dont know where to begin. Everyday I think of something I need to ask > but I never get to it. Maybe out of fear? I dont know. I check the > Discovery Health channel alot because I have been trying to keep up with > this story of a little girl (12?) who has CF and had a liver transplant, > its not that I dont want to hear about the bad things its just that when I > do hear about them, I get horribly sad and cant seem to get over it. Jeeze > guys, I could literally talk to you all for days and days about how I feel > and what is going on with this family! > > I will answer some of your guys questions right now though, and maybe you > guys can tell me why he is taking some of these medicines because Dr. Wojzac > (sp?) doesnt either seem to have the time or care enough to let us know > anything. BTW, I have alot of animosity towards doctors since Randy has > been diagnosed.. particularly towards military doctors. > > Randy is on Zyrtec, Zantac, Flonase, Flovent, Albuterol, ADEK, occasionally > he is on prednisone and antibiotics. He is also on enzymes Ultrase MT12 4.5 > with meals and 3 with snacks. I have a hard time making the enzymes 4.5 > though:( > > We are a military family as you could have guessed already from my comment:) > But not for long, we will be getting out in December and hopefully make a > better life for us in the real world. We are stationed in San Diego which > is where I was born and raised We have had the opportunity to meet with > some of the CF families out here but they only seem to meet in Camp > Pendelton. We haven't found any other CF groups in San Diego yet. > > One of the questions I have I dont know if anyone can answer, but I wanted > to know if anyone had any news about the DNA being mapped and if that will > have any positive effect on a cure or new medicine for CF? > > Also, my son seems to need to run to the bathroom as soon as he takes his > enzymes.. do any of you see this happening with your children as well? > > > Thank you all for listening to me and for being so nice:) > > > > > ------------------------------------------------------------------------ > Make new friends, find the old at Classmates.com: > http://click./1/7075/8/_/480698/_/963962521/ > ------------------------------------------------------------------------ > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2001 Report Share Posted August 22, 2001 Dear Pam- Congratulations on the birth of ! Please feel confident that you are doing the right thing for him. We are here for you!! Sammy n born 5/24/01 unilateral clubfoot (rt) currently in DBB 24 hrs a day Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.