Hello everyone,My name is Becky and my three month old daughter, Hayley, was just diagnosed with CF a week ago. As you can imagine our whole lives have been turned upside down and I am glad to have found this forum to be able to post questions and talk with others who know how I am feeling. My daughter's problems started with severe acid reflux and she aspirated into her lungs, which sent us to the hospital in the PICU for well over a week and on a ventilator for a week. She also had to have surgery on her stomach, a Nissen Fundoplication and a G-Button placed, so that she can no longer vomit or spit up and aspirate into her lungs. We were then sent home , only to come back to the hospital 2 days later due to her wheezing and breathing difficulties. Our doctor at the hospital, a pediatric pulmonologist said we would do the sweat test just to rule out CF, he said he would be very surprised if she had it. I got on the internet to research and saw all the signs, greasy bulky bowel movements and lack of weight gain which we always thought was due to the reflux, but turns out it was not. THe test came back positive as did the second confirmation test. Luckily our 3 year old son, Nathan, was tested yesterday and does not have CF. We are still trying to find a way to cope and arrange care for our daughter who was in a group daycare setting, which now will not work due to all the meds she is on and risk of infection. Luckily we have an accredited CF center right here in Fort Wayne, Indiana at our hospital and lots of family willing to help, but my time at work has run out and I must return to work on Friday and financially this is creating a real mess!I would love to hear any advice from anyone as to how to deal and cope with this, especially anyone with a young infant with CF or whose child was diagnosed with CF as an infant. Did you have problems with weight gain and for how long? Which enzyme was your infant on? How long is too long to go without a bowel movement? THey have changed my daughter's enzyme several times because she was having too many bowel movements and they were loose, we are now back on Creon 5 and she has not had a bowel movement in 2 days. Thanks in advance for all replies!Becky, Mommy to Hayley 3½ months with CF, Nathan 3 no CF
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3 MONTH OLDS JUST DIAGNOSED, ANY ADVICE?
- Thread starter rcq925
- Start date
Sorry to hear about your daughter's diagnosis. I remember the feeling of the world turning upside down when our first child, Sophia, was diagnosed almost three year ago. She was five-weeks old. Our son, now 9 months, also has cf. Did you have problems with weight gain and for how long? Yes, my daughter had not gained any weight up to the point she was diagnosed. Although the enzymes helped tremendously, she has always needed to gain weight. The cf doctors tend to like more body fat (at least 25% growth chart) for those with cf. Good weight gain helps lung function and also is helpful if they get sick. My daughter has never enjoyed eating. Fortunately, my son likes to eat and his weight for now is "Good, but could be better." Which enzyme are you on? My daughter is on Creon 10. My son is on Ultrase. He receives Ultrase free for the first two years through a program that all cfers qualify for called Carefirst for CF. Your nutritionist should have the info. My daughter switched from Ultrase to Creon because Creon is smaller and she is swallowing them whole now. How long is too long to go without a bowel movement? It is hard to know. There could be a bowel obstruction. It is best to contact your CF doctor/nurse and ask them.I know this must be a challenging time for your family. It does get easier as time goes on!Sharon
I am sorry about the dx of your daughter. The good thing is that knowing the problem u can start treating it. My son, now 16 months, had weight problems for the first weeks in the nicu until they started giving him enzimes, he still takes the same enzimes and the same amount for all these months. He is on creon 5. the program who gives free enzimes for the first 2 years is called "wee care" from the company that produce creon.Now my son has no weight problem, he is around the 75% from the chart.About the bowl movements, baby can have problems w/ it...sometimes is can take 2 days and it is ok. But if u are scared talk to your doctor coz if it is something wrong it is better to know as fast as possibleDoes your daughter has any breathing problem?? what medications is her on?/Any question u can e-mail me ( woosky_val@yahoo.com ) I know it is a sary time and probably u have so many questions...learn as much as u can.loveval
Hi i have a 16 month son old who was diagnosed at 3weeks i understand every emotion thats goes with it the only advise i can give would be listen to the dr's and all the people who work with him follow what they say.If you feel something is wrong all you do is call whenever i have a question i pick up the phone and call even when he gets a fever even on a holiday someone will always be there to help. Are you in the NJ area? If so what hospital do you use?
Sorry to hear about your daughter however it sounds like you've already been through so much that now that they have her diagnoised they can get her the help she needs. I have three children my two youngest have CF. My oldest a boy has struggled with his weight all his 12 years he has never had an appetite and has a a g-tube for 7 years. My daughter who is 7 has always done well with her weight. Both were diagnosed as infants.T
Hi Becky,My daughter was diagnosed at 31/2 months. She's now four. I am so sorry. Right now I know you are grieving but before long you'll be a pro. You'll be handling things you never thought you could and doing just fine. We used Creon 5 in the beginning and sprinkled it in applesauce, now she uses Creon 10 in pudding and her little cousins and friends wish they could have enzymes at every meal, too. If there is any way you could stay home to take care of her yourself, that's what I would look into first, if not I would hope family would reach out to help. Never skip the enzymes, that was a big thing our doctors were always saying, never skip them because she's mad or accidently knocks the spoon out of your hand, just go make more because she has to absorb every bit of fat and protein that she can. As far as concerns about her bowel movements, call the doctor, if your worried about anything, call the doctor and don't let them dismiss it if you are concerned. Doctors can miss things, it's better to be safe than sorry.
HI BECKY. I HAVE 3 CHILDREN. 2 BOYS AND A GIRL. MY BOYS ARE 6 AND 8 YEARS OLD. MY DAUGHTER IS 3 YEARS OLD. BOTH OF MY BOYS HAVE CF. BAILEY(8) WAS DIAGNOSED AT A MONTH AND A HALF. CONNER(6) WS DIAGNOSED AT 9 DAYS OLD. SARA(3) DOES NOT HAVE CF. I KNOW EXACTLY WHAT YOU ARE FEELING. I WAS HEARTBROKEN WHEN I FOUND OUT ABOUT BAILEY. HOW WE FOUND OUT WAS THAT HE WAS A FALIURE TO THRIVE BABY. HE HAD LOST ALMOST A POUND WHEN I BROUGHT HIM HOME FROM THE HOSPITAL. HE STAYED AT THE WEIGHT FOR ALMOST 2 WEEKS. I TOOK HIM BACK TO THE DOCTOR AND THEY STARTED RUNNING DIFFERENT TESTS. AT A MONTH AND HALF HE WAS PUT INTO THE HOSPITAL. HIS BREATHING WAS NOT NORMAL. WHEN YOU WOULD WATCH HIS TRACHEA YOU COULD TELL HE WAS HAVING TROUBLE. THEY PUT HIM IN THE HOSPITAL AND STARTED RUNNING ALL KINDS OF TESTS. FINALLY I HAD TOLD THEM THAT HIS DAD WAS DIAGNOSED WITH CF WHEN HE WAS A INFANT. THEY IMMEDIATELY TESTED BAILEY. THEY DID THE SWEAT TEST AND IT CAME BACK POSITIVE. THEY THEN SENT ME TO LOS ANGELES CHILDREN HOSPITAL AND THAT IS WHERE WE FOR SURE FOUND OUT THAT HE DID INDEED HAVE CF. I WAS RELIEVED THAT THEY DID FIND OUT BUT AT THE SAME TIME VERY SAD. WHEN I GOT PREGNANT WITH CONNER, THEY HAD TOLD ME THAT THERE WAS A 25% CHANCE THAT HE WOULD ALSO HAVE CF. SO THERE WAS 75% CHANCE THAT HE WOULDN'T. I DID NOT HAVE ANY TESTS RAN WHILE I WAS PREGNANT. WHEN HE WAS BORN THE TESTED THE BLLOD OUT OF HIS CORD. WHILE WE WERE WAITING FOR THE RESULTS, I JUST GOT THIS FEELING THAT CONNER TO HAD CF. I THINK THAT IT IS A MOTHER'S INSTINCT. SO I CALLED THEIR CF DOCTOR AND TOLD HIM TO ORDER CONNER SOME ENZYMES. AND AT 9 DAYS OLD THEY CALLED AND LET ME KNOW THAT HE HAD CF. SO I KNOW HOW YOU ARE FEELING. BUT ALL I CAN SAY IS KEEP YOUR HEAD UP. THEY HAVE CAME SO FAR WITH CF. WHEN EVER YOU FEEL THAT YOU NEED TO CALL THE DOCTOR DO IT. THAT IS HOW I DID IT WITH 2 HAVING CF. NEITHER OF MY BOYS HAVE HAD TO BE HOSPITALIZED. THEY HAVE ALOT FAMILY WHO TAKE GOOD CARE OF THEM AND ARE IN THIER PRAYERS. JUST DO WHAT THE DOCTORS TELL YOU TO DO. THEY KNOW WHAT THEY ARE DOING. STEPHANIE, MOTHER OF 3 (BAILEY-CF, CONNER-CF, SARA-NO CF).
Yes she is having some breathing problems. Right now we are doing 3 breathing treatments per day with Xopenex in all of them and Pulmicort in two of them with CPT. She is also on Augmentin to clear up her staph infection, vitamax viatmins and Zantac. SHe takes half of a capsule of Creon 5 with each bottle.BEcky
HollyCatheryn
New member
Hi. I am 25 w/ CF and was diagnosed at 7 mos. I was diagnosed because of "failure to thrive." I've never had many problems with my lungs, but my mom says that it took me until I was 6 wks old to regain my birth weight. Even now, with my weight under control and a good enzyme regimine, my bowels are always a little off. I tend to go less frequently than most people and when I do it is pretty foul. Be careful about making sure all her enzymes are completely washed down with food or drink so that they don't digest the lining of her mouth or the skin on her fingers if she sucks them (that happened to me). The first thing I'd like to say is how much I respect how hard this must be to rearrange your lives for your daughter and still manage to keep life normal for your son! Try to get the book <U>The Spirit of Lo</U> by Deitrich. Lo is their 2nd daughter who has CF. She's a healthy teenager now. But, they talk all about the balance and the struggle. Second, get a hold of the nutritional supplement Reliv (<a href="http://www.relivonline.com">www.relivonline.com</A>). It is specially formulated to be easily digested and has made a HUGE dfference for all the people with CF who've tried it. There is a special kids formula that has extra stuff for kids brains and growth (I have not needed to take my enzymes with it). I was put on Nutramigen as an infant and it made a world of difference. I don't know if they still make this or not. My grandmother is a Reliv distributor. Her email is <a href="mailto:bcfreeme@aol.com">bcfreeme@aol.com</A> and her business phone number is 815-790-4356. She can give you more info about the product as well as put you in touch with other people with CF who've tried it so you can talk directly to them and ask your questions.Feel free to email me at hcmnjl@vvm.comHollyCatherynPS - I am married and have a healthy 2 yr old girl.
Hi Becky,I know exactly what you are going through, my son has been through everything Hayley has gone through. Mikey was diagnosed at 2 weeks old, it was a tremendous shock for us. He turned 3 last month. Mikey has severe reflux which he takes zantac and prilosec for, has a feeding tube with feedings on 14-16 hours a day, he vomited everyday numerous times until he got a nissen fundoplication which has worked wonders, he is on albuterol pulmicort pulmozyme and Tobi via his nebulizer, with chest PT 2-4 times a day. He aspirated food/vomit into his lungs prior to the nissen. Mikey was only 16 lbs when he turned 1 , 22 lbs. when he turned 2 , and is 29 lbs. now. He was always in the 3rd percentile for wt and ht, now he is in the 25th and gaining weight much better. It is hard to get the correct dose of enzymes especially infants . Mikey takes creon 5 capsules, 7 with all meals,snacks, and tube feedings, he only took 1/2 when he was Hayley's age. I had to quit work after he was diagnosed to care for him, it hit us hard financially but we make due, my husband works alot of overtime. Mikey is a very happy, active, and busy 3 year old. Hayley is lucky to have a Mom like you,hang in there and God bless.<img src="i/expressions/face-icon-small-smile.gif" border="0">Donna Mom to Mikey 3 w/cf<img src="i/expressions/face-icon-small-cool.gif" border="0"> Hannah 6 w/o cf<img src="i/expressions/rose.gif" border="0">
Becky,I, too have read The Spirit of Lo and just know that if you do read that book, that each case is specific. This girl named Lo had problems a lot worse than I did when I was a child and I don't know how she compares to others & what they've experienced, but I just didn't want you to read that book and think that that's what you have to look forward to.CF is a serious disease, but each person has their own individual level of illness that they deal with. I'm guessing Lo is in her 20's now & there are improvements now that your child will have access to that Lo didn't when she was a baby to make it easier for your baby if she even DOES have many problems.You're in our prayers & God Bless<img src="i/expressions/face-icon-small-smile.gif" border="0">
Becky,My name is also Becky and I have a 14 month old with CF.He was diagnosed at 3 weeks old, and since then has received the best care possible from our team.He was mild failure to thrive so even when he was seen by a CF doctor we were told not to expect that he had CF.But we also received the phone call to say he appeared as pancreatic insufficent which suggested he did had CF.I remember driving down the road straight after to take another poo sample to confirm in a absolutel daze.Nothing has been more shocking for me in my entire life.Not to mention looking at my beautiful newborn thinking how could I have done this to you?Irrational thought now I know but then I really felt guilty.Anyhow, now he is thriving in all areas, although we have had pseudomonas which we managed to clear this time that is probably been the toughest thing we have been through at this stage.So it is like the last poster said, each case is different, and I know I read about all these other cases and expected the worst when it hasn't been like that for Matthew.I was given advice from a experienced doctor who said learn about CF from your son and try no to take everything on board.I wish you the best of luck for the future, and remember that our children do face a very positive future and we need to try and remember that on our bad days!Rebekah Mother to Matt 14mths w/CF
Becky, Hi just read your post. I only come on here every few months, I wanted to tell you that things will get better. My son was diagnosed at 3 weeks old. He was sent home on enzymes, albuterol, pulmicort, and zantac. He had failure to thrive and really severe reflux. He threw up every day (5-6 times). He had the nissen fundoplication and a GJ tube placed to help him gain weight. He aspirated food into his lungs from throwing up so much just prior to his nissen. He has been hospitalized 13 times since birth. He is now 3 1/2 and doing rather well, he had a rough start but is feeling preety good at the moment. I had to stop working and stay home to take care of him, had a hard time finding an appropriate daycare and was just too expensive. Mikey takes creon 5 , it took a while to get the right amount but they seem to be working fine. It is very hard taking care of a child with CF , but hang in there. I hope that Hayley is doing well.
Donna, Mom to Mikey 3 1/2 w/ cf and Hannah 6 1/2 w/o cf
Donna, Mom to Mikey 3 1/2 w/ cf and Hannah 6 1/2 w/o cf
Is creon safe for intake by healthy people?
I mean is it only to treat certain symptoms only? I am still skeptical. Most drug store around my area don't keep the stock since they claim there's no demand. Does it mean that everyone is after slimming products?
Let me start from fresh, I am skinny and I am desperately planning to gain weight. That's my only intention. Would creon be the safe and intentionally meant for healthy weight gain?
I mean is it only to treat certain symptoms only? I am still skeptical. Most drug store around my area don't keep the stock since they claim there's no demand. Does it mean that everyone is after slimming products?
Let me start from fresh, I am skinny and I am desperately planning to gain weight. That's my only intention. Would creon be the safe and intentionally meant for healthy weight gain?