Any Advise Please!!

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mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/8/2006 12:57 AM (GMT -7)   
I just found out my 4 week old son has cf, I have read so much information in the last week but I would really like to talk to someone who has a baby with cf or who has grown up with it . Thanks

momma cat
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Date Joined Mar 2006
Total Posts : 9
   Posted 3/8/2006 5:00 PM (GMT -7)   
hi my name is catherine i have cf and it is not an easy thing to deal with what things would you like to know

sincerly momma cat

mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/8/2006 5:18 PM (GMT -7)   
The doctors have put him on enzymes but we were just wondering how you know if you really need them. The dr's say 85% of all people with cf with the 2 genes need them but how do you know if your not in the 15% when they put you on them right away. He was doing great the first 2 weeks but now that we started the enzymes he has bad gas and smelly poop they say it is part of it but why didn't it start until he started taking the enzymes.

mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/8/2006 6:27 PM (GMT -7)   
My 3 1/2 week old baby girl has CF. I'd love to chat with mommyscfbaby.

The doctors have put her on enyzymes as well. I am not sure if it is necessary for her to take the enzymes either. However, I want to do what is best for her and help prevent any future problems. I want to best control her CF. I want her to have the best possible future. I want her to be able to fulfill her dreams, share her successes, and live a happy life. She seemed normal the first two weeks as well, but I also have noticed lots of gas that upsets her since she started taking the enzymes. She also takes a vitamin supplement that stains everything and that she hates to take because it tastes bad.

This disease is emotionally draining and I don't think my boyfirend or family really understands. I feel frustrated.

mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/8/2006 8:08 PM (GMT -7)   
mycfangel my name is Heather and my sons is Conner thanks for replying I know how difficult this all is I feel the same way.  ( drained) When did you find out your little girl had cf? We found out Conners newborn screenings were abnormal when he was 1 week, 2 days later they sent us for a sweat test which didn't work because he is so little so we had another dna test done which came back with the same results so now we know he has it but we still have to have another sweat test done to confirm it, and our 4 year old daughter has to have one to see if she has it.I feel like my life is falling apart in front of me.Conner also takes the vitamins (they suck)they make him gag and his poor belly rumble and yes they stain everything. Are you and your boyfriend both carriers? Thats what happened with Conner we had no idea nobody on my husbands side of the family has ever had it and I was adopted so I don't know my history I just wish we would have known.

mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/9/2006 9:58 AM (GMT -7)   
Hi Heather. My name is Jodi and my daughters name is Bailee. I was glad to see your post yesterday. All of the other families, at the CF clinic we go to have older kids so it makes it hard to relate to them. It's scary to see them because it makes me think this is what the future will be like for our family and for our daughter. We first found out when the results came back from her newborn screening. She was in the top 4% trypsinogen for the day she was born. In the state we live in they automatically require a sweat test for this reason only, but they also found a mutation of CF. I thought there was no way she could have it since there was no family history on either side. Our pediatrician even said not to worry because she probably doesn't have it. I felt reassured by the pediatrician. So at 2 weeks old we had the sweat test done. That's when we found out that she had CF. We are having genetic testing done to find out what exact mutation she has since there are 1000 different types. We have to wait about 2 1/2 weeks yet for the results. Then they will better know how to treat her CF and how severe the CF specialist thinks it will be for her. My hope is she has a mild case of it. I have two other girls ages 6 and 5. They don't have to have the testing for CF done because they were fathered by my ex-husband. My ex-husband had the CF testing done and he does not have it and he is not a carrier of CF. Try this with Conner to get him not to gag on the vitamins: Take a medicine dropper. Put the amount of vitamins in it he needs. Then let him suck it out at his own pace. It may take longer, but it works so Bailee doesn't gag. Bailee spits out hardly any which helps not to stain her clothes as bad or as often. My boyfriend and I are both carriers. We had no idea we were carriers. There is no family history of it for me or my boyfriend. I wish we would have known too. It's hard everyday. Over and over in my mind I recall the moment the CF specialist told me. At first, I thought I was in some bad dream and that I would just wake up and it would be over. Then the tears started pouring out of my eyes and running down my face. The doctor handed me a box of tissue. He kept talking, but I didn't hear anything. I became numb inside. The scariest thing is not knowing what the future holds.

mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/9/2006 3:11 PM (GMT -7)   
Hi Jodi how are you doing today? We have not yet gotten to talk or meet any one from our clinic  so I am very greatfull to be able to talk with you.All we have had is what the Dr's tell us and what we read on the net and in books it's all very scary because you just don't know how it's going to affect them.My husband trys to keep me thinking positively saying he will be just fine there is nothing to worry about,but it's very hard to believe.I am having a hard time, I just want to sit and hold him all the time
I have to keep reminding myself Ihave a family to take care of and I can't let this run our lives I just have to make it part of our lives and give him the best life we can. I just don't want him to be sick I don't want him to have to go through this I wish I could make it go away! Does Bailee have a hard time going to the bathroom since she started the enzymes? Conner used to go 6 or 7 times a day now it's only 1 or 2 he seems so uncomfortable.Our dr. says it's normal, but the books says breast feed babies poop alot and I know my daughter did.I just wish I knew what the normal was. Thanks for the advise on the vitamins it did take alot longer to give but at least he wasn't gaging as badly.

mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/9/2006 4:49 PM (GMT -7)   
Today is one of the better days. I am just enjoying my baby girl. I can't imagine how hard it is for you not talking to anyone from your clinic yet. I hope the CF staff/clinic you go to is as good as the one we have here. Her CF specialist is available 24-7 even if he's out golfing or fishing. We have two gentic counselors that are always there to listen and answer questions. We also have a dietician. The CF staff stays in close contact with our pediatrician. That is a big help. The downfall to the CF clinic we have is that it is 1 1/2 hrs. away from where we live. At least, when we go they make all her appointments in one day. We go to the CF clinic every 3rd thursday of the month. Talking with you helps to cope better. My boyfriend tries to be positive just like your husband. I just want to sit and hold Bailee all the time too. Then reality sets in that I have two other girls who also need my attention and time. It's not easy making the daily regiment she has part of everyday life. I just wish there was a cure. Bailee definitely has a hard time going to the bathroom since she started taking the enzymes. Baille use to go 8-10 times a day. At first, she pooped 1-2 times. Now she poops like 2-3 big poops and 1-2 little squirt poops a day. The doctor says this is normal. The way she poops and all the gas she has from the enzymes makes her fussy. It gets frustrating. How does Connor take his enzymes? We have to break the tablets open and put have of it on baby applesauce. She doesn't do to bad with it. I think she enjoys the applesauce. Then we have to rinse her mouth with water so it won't get sore. Then I have to breatfeed her. At every diaper change, we have to put ointment on to keep her from getting sore from the enzymes. I would suggest Utter Cream or Budreau's Butt Paste. It costs a little more than balmex or desitin, but it works alot better. How is your day going? If you can locate a PARENTS magazine from Feb. 2006 on page 90 there was an article about a pediatrician whose son has CF. Thought you might like to read it.

lovemycfson
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Date Joined Mar 2006
Total Posts : 2
   Posted 3/9/2006 5:24 PM (GMT -7)   
 To mycfangel and mommyscfbaby, my name is angel and my son's name is jordan.  jordan just turned 4 yrs old in feb.  we didn't find out that jordan had cf until he was 2 1/2 and there are still so many things i need to learn.  if you could explain a little about the mutation testing you are having done because i have no idea what this is.  also if you are bottle feeding, i seen a girl in the clinic open the capsules and just put them in her babys mouth and continue with the bottle.  i was doing the applesauce with jordan and it was hard, it tried dumping them in his mouth and its much easier, he's old enough to take them himself now.  :-)    i to also have a 12 yr old daughter with a different father and she is negative.  please if you could explain mutation testing and the reason i would appreciate it.

lovemycfson
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Date Joined Mar 2006
Total Posts : 2
   Posted 3/9/2006 5:26 PM (GMT -7)   
mommacat-how old are you and just a little of what you have gone through.  thank you

mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/9/2006 6:54 PM (GMT -7)   
The mutation testing is to find out what form of the gene they have from each parent. We know Bailee has mutation F508 from one of us. We are unsure about the other mutation type. That is why they are doing the genetic testing. They draw blood from the arm to do the testing. There are 1000 different mutations of the CF gene. Only certain facilities can do the testing. The testing costs several thousands of dollars. There are benefits to having the test. It helps our daughters CF team determine the best dietary needs, it helps the doctor determine the best treatment, and it determines how severe of a case they think she will have of CF. I am breastfeeding. We do give once bottle a day. The dietician actually does not reccomend putting the enzyme in her bottle because it can break down. Then taking it does no good. Bailee takes the enzymes pretty good with the applesauce.

mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/10/2006 9:11 PM (GMT -7)   
Hi Jodi, how are you doing? I hope are CF team is good too. We have only met with the pulmonary Dr. and the cf nurse coordinator.They also have a dietitian,social worker,and physical therapist. Is Bailees Dr. a pulmonary Dr. or is he called something else.We really liked his Dr. but if there is someone more educated with this we would like to find them.Conner takes half of a capsule about 6 or 7 beads in baby applesauce also, he seems to enjoy the applesauce too. They told us to give them like that then breastfeed then check his mouth, nothing about rinsing his mouth out with water.They also just told us to make sure we change his diaper right away. So far so good no sores anywhere. Do you have to take Bailee for weekly weight checks? Conner goes every wednesday he is doing really great he is up to 8lbs 6oz he weigh 7lbs 5oz at birth. In 1of my post I asked if you both were carriers ( of course or they wouldn't have it) what I was thinking was if you knew what mutation she had Which you are waiting on the answer.My brain is fried of late. We know Conner got the delta f508 from both of us, but they told us they couldn't tell us if he would have a mild or severe case. I pray it's mild but any way it still rots.

mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/11/2006 1:29 PM (GMT -7)   
Today has been a pretty good day for us. How are you and your family? My 6 and 5 year old are at my ex husband's for the weekend. Which helps give me a break. Bailee doesn't have a Pulmonary Dr. . She has a Pediatric Infectious Disease doctor. His specialties are in Cardiopulmonary Medicine and Phonocardiography. He's been practicing for 25 years and treated several hundred CF kids. What do you know about Conner's doctor? I heard the Mayo clinic in Rochester, MN and the university of Madison, WI hospitals are suppose to be good. Bailee takes half an enzyme tablet as well. The dietician has us squirt water into her mouth to get all the enzymes down before I breastfeed her because the enzymes can cause sores in her mouth and on the breast. We take her for weekly weight checks. We take her every Thursday to a clinic close to our house. Bailee really isn't gaining enough weight in my mind. I remember my other two kids being bigger. She is 8lbs. 1 oz. and also was 7 lbs. 5oz. at birth. What a weird coincidence? I'll let you know as soon as we know what exact mutation she has of CF. My boyfriend and I both work for radio stations and they have agreed to help do fund raising for the CF foundation. We are going to go a Harley Ride for my boyfriends station. My station is putting on a SevenDust concert . Both of these events will donate half the proceeds to the CF foundation. My boyfriends grandma who is a millionaire is also thinking about donating a big amount of money on Bailee's behalf to the CF foundation. My family is really religous my mom said something that made sense-...God never gives us more than we can handle.

mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/16/2006 1:18 PM (GMT -7)   
Hi Jodi, How are you doing? How is Bailee doing? Conner is doing well! I had him for his weight check on Wed. he weighs 9lbs,how much did Bailee weigh this week?Been pretty busy this week getting ready for my sons B-day party on Sat. he's going to be thirteen, where does the time go.I think it is wonderful that you and your boyfriend have gotten fund raisers set up already,Thank You! My Mother In Law has a plaque that say God never gives us more than we can handle so it must be true.Well tomorrow Conner and Cloey both have to go for their sweat tests,Conners is just to confirm again,Cloeys is to see if she has it also.I pray she doesn't because I don't know if I will be able to handle it. Take one day at a time,even take one hour at a time is what everyone is saying it's just so hard. Did you get the results from the sweat test right away?Conners Dr. has also been practicing for 20 some years.

mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/16/2006 8:48 PM (GMT -7)   
Bailee went to a CF appointment today. She weighs 8lbs. 11 oz. . They would like her to gain a little more weight. So now we have to give her 3 ounces pumped breastmilk and 1 scoop formula in the milk for one bottle a day. They kept her on the same amount of enzymes. We learned about doing chest percussion for her. It's not hard to do. It's just time consuming. Did they show you how to do that for Conner yet? I am glad that Conner is doing well. Kids grow up way to fast. It seems just like yesterday that my 6 year old was a baby. I hope your 13 year old has a good birthday. Before you know it he'll be graduating high school. My hope is that maybe by helping to raise funds for CF it will help find a cure and let our precious angels live long and happy lives. We have you and your family in our prays. I hope that the sweat testing goes good and shows that Cloey does not have CF. It would be difficult to have two kids with CF. From the moment, you find out your child has CF your life changes. It's struggling through days and hours that drain you emotionally and physically. People who don't have a child(ren) with CF never fully understand how it impacts you. We got the results from the sweat test within a few hours. Let me know how things go tomorrow.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 3/16/2006 10:25 PM (GMT -7)   
Hi Ladies and Welcome To HW CF Room,

Sorry, I have been away from the board, my daughter had a baby and she has had me tied up with her, not that I didn't want to be....hehehehehhe. We have a new baby boy addition to our family. Grandma is soooooo proud!.

I can feel your frustrations in your posts and trust me, things will get better with time. The hump seems like a endless dream right now, but, it will not take that long. It was a blessing when my twin boys started taking their enzymes, it was like a miracle. Yes....enzymes will be taken for the rest of their life so prepare yourself and your child for whats the easiest and the best way to give them. I do want to let you know that when your baby is treated at a CF Center, they have so much criticial information and some great therapist and counselors that can help answer any questions you have to ease your mind. They have a social worker that is a huge help for times like these when your feeling down. They also help to steer you in the right direction financially. What a blessing they are and all CF parents need them.

I'm sorry, but tonight, I am on a limited time but will be online tomorrow to see how things are going with you all.

Goodnight.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/21/2006 9:29 AM (GMT -7)   
Hi Jodi, How are things going? Cloeys sweat test did not work.They did it two times but could'nt get enough sweat.They say it could be good because cf kids normally are very sweaty.So now we have to wait two weeks for the DNA test to come back.Two more weeks of waiting I can't take it! Conners sweat test came back with a 92 which just confirmed it 1 more time.Conner weighed 9lbs 2oz and they uped him to 1 whole capsule because of his weight.They also showed us how to do the clapping you're right it's not hard just time consuming. They say he looks and sounds great! We went to a support group on Sunday It was nice to talk to some other familys.They also do alot of fundraisers so I'm glad we found out some ways we can help raise some money for our little guys.

stephen101
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Date Joined Jan 2006
Total Posts : 19
   Posted 3/22/2006 5:51 PM (GMT -7)   
:)

Post Edited (stephen101) : 12/6/2012 12:30:20 PM (GMT-7)


mycfangel
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Date Joined Mar 2006
Total Posts : 12
   Posted 3/22/2006 5:56 PM (GMT -7)   
Bailee got this rash on her face,back, and chest two days ago. We think it is from the formula we started adding to her breastmilk bottle. The doctor should be calling us next week about the results of her mutation testing. If the DNA test comes back positive for CF will they do another sweat test on Cloey? Keep me posted on Cloey's DNA results. My prays are with you and your family. Bailee will have an x-ray the next time she goes to the CF clinic. Just as a preventive thing to look for mucus build-up, etc... . We found out that they are doing a walk for CF at the clinic on April 29th. I think my boyfriend and I will also participate in this as well. How long does it take you to do the Chest PT on Conner? How are you doind to adjusting to Conner having this? Somedays are easier than others. Slowly I think we are adjusting to the whole thing.

mommyscfbaby
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Date Joined Mar 2006
Total Posts : 19
   Posted 3/23/2006 4:59 PM (GMT -7)   
They will have to do another sweat test on Cloey if her DNA comes back with two mutations.(lets pray it doesn't)I do Conners chest pt twice a day for twenty minutes.He seems to enjoy it he just lays there or sleeps right through it.I was having a really hard time with Conner having CF.I would sit around and  cry,I couldn't think about any thing else Icouldn't even make a nice dinner without ruining it.So finally I talk to my Dr.and she put me on a antidepressant I'm starting to feel a little better the last couple of days.I feel bad I couldn't handle it on my own but I just got to the point that I wanted to feel normal again whatever that is?What did they tell you to do about Bailees rash?

mycfangel
New Member


Date Joined Mar 2006
Total Posts : 12
   Posted 3/26/2006 8:06 AM (GMT -7)   
Do you notice with the chest PT if Conner coughs out the mucus yet? I really haven't noticed anything with Bailee yet. I spent the first few weeks after we found out Bailee had CF crying too. I wasn't taking good care of my other two girls. I was just doing stuff to survive. What antidepressant did they put you on? I am glad that the medicine is helping you. I have a friend who has bipolar really bad. So I know how it can affect people. I don't think there is a normal after you find out your kid has CF. You adjust as best you can and find a new normal. You know what I mean?? They thought the rash was from the formula, but they said it is baby acne really bad because she sweats so much from having CF. So now we have to make sure we wash her a certain way every day to keep the acne under control. Does Conner sweat a lot?

mommyscfbaby
New Member


Date Joined Mar 2006
Total Posts : 19
   Posted 3/27/2006 10:40 AM (GMT -7)   
We have noticed that he coughs alot more but we have not yet seen any mucus.Conner also sweats quite abit I really have to watch what I dress him in or else he gets heat rash.They put me on zoloft,seems to be working well.It's amazing how your whole life changes when you find out your child has CF.We had bought two houses that we are making into one and now we are going to have to move because all the dust from remodeling and the road we are on is well traveled by coal trucks,and that is not good for Conner.I also quit my job because I worked in a daycare and the kids are always sick and passing germs back and forth and just stuff like that, then you have the emotional end of it.You are very right in saying you have to find a new normal.Conner started cooing and smiling last week,I just love to watch them grow but on the other hand you wish you could keep them little forever.

Pixme
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 3/27/2006 11:29 AM (GMT -7)   
Hi I have grown up wiht cf, im 13 now. When I started taking enzymes, I was 2 1/2 (diagnosed after having pnuemonia) and ever since iv just got used to them. However, apparently the doctors told my parents they could have the same effect as you described. I'll get back to you in more detail.

Its is also common for children with cf to be a lot more sweaty than children without.

I know it's hard and my parents went through hell which is how I know they love me and support me. I can see you love Connoe very much and I think thats the best thing you could ever do. Keep it up!!! He obviously likes it if hes smiling!!!!! I hope all goes well, keep me posted!!

xTonix

P.s. I am a girl although the name is misleading!!!

mommyscfbaby
New Member


Date Joined Mar 2006
Total Posts : 19
   Posted 4/4/2006 1:46 PM (GMT -7)   
Hi Jodi! I haven't heard from you in a while I hope everything is ok.Cloey's test came back negitive for CF although she is a carrier I am so happy for her.Conner is doing well, he goes on Friday for his 1st set of shots, I'm not looking forward to that! Hope Bailee is doing well.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/5/2006 3:52 AM (GMT -7)   
Hope everyone is doing well. I am checking in!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

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