MY LITTLE GIRL WHO HAS CYSTIC FIBROSIS I FOUND OUT ABOUT 3 MONTHS AGOWHEN SHE HAD THE SWEAT DONE I DIDINT NO WHAT CF WAS AND NEVER HEARDOF IT TILL THEN. SHE WAS VERY CHESTY AND GOT HER FRIST CHEST INFECTIONWHEN SHE WAS 2 WEEKS OLD AND SO ON AFTER THAT TILL I NEW THERE WASSOMETHING WRONG BUT THOUGHT IT WAS ASHMA SO I REQUESTED TO SEE A SPECIALIST AND IT WAS CF I TOOK THE NEWS VERY BAD FOR THE FRIST MONTH KEPT CRYING BUT NOW SINCE SHE STARTED HER MEDICATIIONSHE HAS IMPROVED BUT ON WEIGHT AND LOOKS WELL SHE WAS 2 ON DEC 14 MY ONLY PROBLEM IS I NEVER NO WHAT TO EXPECT I DONT NOIF SHE HAS A PAIN OR IF SHE IS NOT FEELING WELL AND IT IS A BATTLETO GET HER PHYSO DONE SHE SCREAMS I WOULD BE GRATEFUL IFANYONE HAS ANY TIPS OR HELP THANK YOU EMMA
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MY LITTLE GIRL.
- Thread starter anonymous
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Emma, what your feeling is normal. As time goes on you will become more familiar with what different symptoms mean in your daughter. For us, the diagnosis and proper treatment really made things better for our daughter. She just turned 7 in Dec. Ask away with any questions, there are a lot of good people here that can and want to help. Michelle
Hi Emma,My little boy is only 9 months old, however we have a real battle with the physio as well.I have talked to many other parents who suggested going and selecting together a special dvd or video and only playing it during phsyio time.It has really worked a treat and has made it a lot easier, as I know it can get quite uspetting when they won't co-operate.I can't sleep if I haven't got all his treatments done properly.I am quite over the top when it comes to his health, if I am not sure I call the doctor or take him in, and I think it really pays off.A great tip that our doctor suggested was that if the child is coughing overnight then it is a good reason to bring them in to be checked.I have done this each time and haven't had any chest infections yet.I hope that this might help, but it is a lot to learn and I am only new to the whole thing as well.I am more than happy to help also if you have any questions or just need someone to chat to!My email is mrlambert@clear.net.nzGood luckRebekah Lambert Mum of Matthew CF
emma, dear, it's not as bad as it seems. as for chest pt - it's always good to turn the treatment time into something the child can enjoy. you can ask the physiotherapists in the hospital you go to for your daughter's checkups about some stuff to do, to mix playtime and treatment. it can make it easier on you and more fun for the little girl. and you can make your schedule so that after each chest pt treatment you and your daughter have some time to do her favourite activity or watch her favourite video - a treat. but don't stress too much - the baby can sense it and it might make her nervous as well. as for general advice on how to make things easier when you have a two-year old with CF, it's always great to talk to your doctor, and if your CF center has a psychologist/social worker, talk to them. they can offer great advice as they are used to work with CF families. also, you can ask to get in touch with another parent who has a CF child older than your little girl, and they can offer you practical advice on how it worked with their kid. i personally cannot help you much - i'm 21 with CF, no kids of my own, and i certainly don't remember how i was at your little girl's age. but i can say that you shouldn't be too worried about the future. your daughter receives the medical care that she needs and she has a wonderful mother who cares about her and does everything for her. i'd say your daughter is one lucky little girl <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF patients today grow up and have lives. i myself am 21 years old, a screenwriting student, with plans to continue to university for the next academic year. i'm a writer, i have many friends who know all about CF and care about me and we have a lot of fun, i go out to places, i date and have been engaged once. CF does take up a couple of hours in my day, but the rest of it is your average life of a woman in her early twenties. also, a lot of CF doctors say that kids with CF are very good kids. they are usually very responcible, as from early age they learn they have to take care of themselves, they are driven and motivated, they work hard in school in order to get good grades and they also work hard to get a good career. they are kids and young people who know what they want and waste no time to get it. a large percentage of them are quite talented and they dance, write, paint or do any other thing artistic. my mother even offered a theory that says that the CF gene is linked to a creative gene - if you're creative, it doesn't mean you have CF, but if you have CF, chances are you're very creative and artistic. so don't worry, dear. it's tough wth a baby, let alone a baby with CF, but it will be easier. *hugs*lois, 21 with cf, from israelboys_dont_cry_1982@yahoo.com
Emma, I know how difficult it is to try and get the CF routine going. Our daughter is now 3 1/2 and doing well. She even reminds us to do her physio, not that we ever forget. She also reminds us of her various meds she takes. For physio we always watch a special tv/video. It is our special bonding time and she doesn't mind it at all anymore. I know when she was younger we did have problems but eventually it becomes part of their routine. I found that getting upset with her made it worse so I would calmly turn off her show if she was not cooperating. Usually she wanted to watch it so she would get back into position so she could have the tv on. We found it helped to have a special something for after physio. I always get a big hug and kiss (with a thank you) when we are done, and my husband finishes his with a nice back rub on her which she loves.I know it is difficult at this age because they cannot express how they are feeling yet but you will get to know the signs, and before you know it she will be telling you if she has any pain. Rebekah says that she takes her child when there is a cough and there haven't been any chest infections and the same is probably true when you think she has pain. I have taken my daughter to the dr. thinking there was something wrong and it turned out to be nothing. It is better to check it out but most times they are fine.Things get better but allow yourself time to be sad. I found the first year was tough but then things started to fall into place and get better. Good luck to you.AM
im raising my 26 month old grandson -he has cf and short bowel-we spent the first year and a half in the hospital. we praise every day that we have been able to stay home with the rest of our family. i have a nurse stay home with home while i work -we are a great team brandon for now is doing well .please anyone who has anything to tell me on cystic fibrosis please respond .lately his lugs have stayed clear but we have been having problems with his short bowel.brandon has a g tube he just doesnt want to eat by mouth although i havent given up i give brandon tastes of everything i eat he is a wonderful kid so strong.
Emma~ I myself have Cystic Fibrosis. I found out when I was 5 years old I'm 17 now. It's not painful but it's scarry and it's a long ride ahead. People dont understand it, so if kids are anything like they are at my school expect her to come home crying alot. Kids are ruthless. Teach her to never want to trade in her CF and it makes her the person she is. Show her love, as much as anyone can give her. Teach her to never give into her fears. CF is a hard thing to deal with, specially for a child with it. emotionally sometime it's hard to bear. Remember she's a normal child, dont smother her to much. You ever need to talk email me. Mystical_angel_831@yahoo.com Love always, Mandi
Hi there,, just want to let people know.... some of the best physio i had when younger was been chased and tickled, i laughed so much it made be cough which brought up mucus,,, its great fun for both of you and great physio.. Give it a try i used to have great fun.. im to old now <img src="i/expressions/face-icon-small-sad.gif" border="0"> not fair!
The only pains that I know of that she may have is gas/stomach pain. That's never fun & with babies/toddlers, it may be hard for them to verbalize that their tummy hurts.
The physio itself shouldn't be painful. I don't remember it being so when I was a child and definitely not now as an adult. One thing I ask is that they stick strictly to patting me on my ribs, not below the ribs in the stomach area, as that can be uncomfortable. Hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The physio itself shouldn't be painful. I don't remember it being so when I was a child and definitely not now as an adult. One thing I ask is that they stick strictly to patting me on my ribs, not below the ribs in the stomach area, as that can be uncomfortable. Hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a now 18 year old son with Cf. We found out he had Cf at 4 weeks old. There were many times that therapy was a huge battle. In the beginning the video's worked. As tht began to fade out we started to do his therapy over a therapy ball. I very large rubber ball sometimes used with physical therapy or exercise. This made therapy more fun. The ball also allowed for vibration along with the "pounding". We also had a small exercise trampoline. After therapy, he could jump on it. It added the benefit to therapy and gave him something to look forward to. With my son being 18, sometimes he still asks me to "pound" on his back and his perfered method is over the ball
Dear Emma,
My little girl also has cystic fibrosis, she is now 8 years old and was diagnosed at birth. I know how you feel. It is one of the most difficult things that I have had to deal with. I want you to know that there is hope for our girls. It is real scary not knowing what to expect from day to day, I have learned to trust in the Lord, don't get me wrong sometimes I still struggle. The Lord gave us our girls because he knew we would take care of them. My daughter has been hospitalized twice since birth and each time it scares me to death. I am really open about her disease with her, I feel she needs to understand the importance of taking her treatments and her med's. There are alot of times when I get really upset and cry, my daughter has seen me cry and she usually knows why, I think that it is best for our children not to see us breakdown! My daughter can now do her own treatments and I can trust her to take her enzymes without me standing over her. I know how hard it is to watch your child scream and cry during x-rays, bloodwork, and all of the other things they need to go through. My daughter has come home with I.V. antibiotics that we had to give her , during these times it is real difficult but you will get through this. My other children help out alot with her needs, I have a younger daughter who was born with a bowel abstruction and the hospital was almost certain that she had C.F. also, I had faith that she did not., she does not have C.F. The best advice that I can give you is to stay strong for yourself and your daughter and to trust in the Lord, of course there will be times when things get scary but God will see you through them.
Linda
My little girl also has cystic fibrosis, she is now 8 years old and was diagnosed at birth. I know how you feel. It is one of the most difficult things that I have had to deal with. I want you to know that there is hope for our girls. It is real scary not knowing what to expect from day to day, I have learned to trust in the Lord, don't get me wrong sometimes I still struggle. The Lord gave us our girls because he knew we would take care of them. My daughter has been hospitalized twice since birth and each time it scares me to death. I am really open about her disease with her, I feel she needs to understand the importance of taking her treatments and her med's. There are alot of times when I get really upset and cry, my daughter has seen me cry and she usually knows why, I think that it is best for our children not to see us breakdown! My daughter can now do her own treatments and I can trust her to take her enzymes without me standing over her. I know how hard it is to watch your child scream and cry during x-rays, bloodwork, and all of the other things they need to go through. My daughter has come home with I.V. antibiotics that we had to give her , during these times it is real difficult but you will get through this. My other children help out alot with her needs, I have a younger daughter who was born with a bowel abstruction and the hospital was almost certain that she had C.F. also, I had faith that she did not., she does not have C.F. The best advice that I can give you is to stay strong for yourself and your daughter and to trust in the Lord, of course there will be times when things get scary but God will see you through them.
Linda