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Posted By : MommatoLS - 8/4/2010 12:34 PM
I am the mother of a 5 week old baby girl.  Her PKU tests have come back twice abnormally for Cystic Fibrosis.  We had a sweat test done yesterday and it came back with high readings.  I have been in tears but trying to stay strong and positive as I also have a 3 year old.  My husband and I are now being referred to a pediatric lung center and a genetics specialist.  I am just so scared and don't know which way is up.  Can anyone help to ease this mom's nerves a little bit???  Our pediatrician says she isn't concerned because our daughter isn't showing any symptoms such as the usual constipation or failure to thrive etc.  She says it could still just be that she has the gene but not the disease...I am so confused.  Can someone PLEASE help me out here and explain from experience or in layman's terms so this frightened mom can understand a little more about what is going on with my baby girl!!!!!?????
Momma to LS

Posted By : midge-lea - 8/4/2010 7:51 PM
hi i have cystic fibrosis and am 20years of age, it may not ease you but may give yo a better insight, if your daughter just has the gene and not the disease i wouldnt worry too much as this may only affect her when she is older and is thinking of having a family of her own, as she will have to be more aware of it, due to the fact that she may give birth to a child with CF. if she has the disease as you said there isn't any major symptoms so if she does have it, it may only be mild and she may not be as ill as some CF patients can be, there are different strains of it but if you speak to your childs consultant im sure they would explain. i hope this is useful to you.
The best thing i can say is, i know it's hard but try to be strong.
take care

Posted By : MommatoLS - 8/4/2010 8:18 PM
Thanks Midge-lea!  Hopefully maybe we will get some kind of insight from the pulminologist tomorrow.  It's so scary because this is not something that I am very familiar with.  My family has a history of heart disease, stroke, Parkinson's disease, diabetes, degenerative disc disorder and that's just naming a few!  No one in my family or my husbands has a history of CF so no one really has any insight for us!  My 3 year old is perfectly healthy and always has been!  This is definitely a different road for me!

Posted By : midge-lea - 8/5/2010 5:58 AM
It's ok :)
my familys health history is also everything but CF, my little sister is fine and clear of CF but had other problems, i am the only one in all my large family that had CF, it can be stressful but it's can be easier than most other severe dissabilitys, i honestly count my lucky stars i dont have something worse, but then there are other people with CF that have it alot worse and dont make it :( but as i said yesterday there are different strenghts of it, and if you make sure that all treatment is compleated as and when it needs to be then there should be very little problems and therres no reason why your little girl cant lead a happy and fulfilled life.
keep smiling :)

Posted By : MommatoLS - 8/6/2010 12:34 PM
Well, after yet another sweat test, we have the difinitive answer and she definitely has CF!  I have just been in tears!  One minute I am fine, the next crying!  We go back to the pulminologist on Monday to discuss a gameplan and how we are going to try to stay ahead of the game!  Hopefully we can do that because like I said, so far, she has no symptoms and her lungs are clear.  I spoke with a family friend last night whose son has CF and he is 33 and doing well.  It made me feel a little better for a little bit!  The social worker at the lung center told me yesterday that it is ok to cry but I feel like my husband is upset with me for crying!  I can't help it!!!  Now we also have to have our 3 year old daughter checked.  Learning symptoms of CF, I am now getting scared that maybe she has it too!  Difficulty gaining weight...she is 3 and 28 pounds!  She tells us all the time that her tummy hurts but she loves going to her pediatrician's office (I used to work there and she loves everyone who works there and they spoil her and give her toys and pencils and all kinds of stuff) and so I never knew whether her tummy really hurt or if she just wanted to go!  When she told me that she needed to go to the doctor because a monkey bit her...I knew that wasn't real!  She is so funny!  Now I am frightened though that things that we have just kind of shrugged off are signs that she has had CF this whole time!!  The lung center gave us a book that my husband started reading when we got home.  I can't even pick it up because there never seems to be anything positive or encouraging in anything I read online!  I am just so scared!!! 

Momma to LS

Posted By : Mid4134 - 8/7/2010 7:01 PM
I'm 24 i have cf was diagnosed at 3 weeks with failure to thrive, i never really had an interest in reading about cf i've just got on with my life an dealt with it. But recently i got interested an looked things up an for other people with cf. An the problem i've found is that everything on the net does scare you. If i had read that when i was younger i don't think i'd of ever left the house. An thought everything was pointless an thats not the case there are no boundries for someone with cf. The doctors said to my parents i would be lucky to make 6 months an i would be more academic than sporty when i was about 2. They were wrong i was in the county football an rugby team. The cross country team an could do the 100m's in 11 seconds. I'm also diabetic now to which is cf related. Now i'm older its harder i don't do as much sport an i work an i hate going to gyms. But i'm ok i keep myself out of hospital for about 2 years then go in twice in one year. The best thing to do is be positive take it day by day an look after her. Keep her fit an don't restrict her when she is older. its hard with any child not to over protective but especially someone with cf. Its understandable but if your over protective she'll stop treatment an rebel against which will do her no good, so give her some of the responsibilty, she'll respond much better than constantly being told what to do by everyone. With doctors, tablets, physio the last thing she will need is her mum constantly worrying about her of course your going to but she doesn't need to hear it everyday. Be there for her, she'll need you she wont want to admit it, I'm a fairly independant person but i still need my mum now to remind me to do things even if i do get angry with her for asking too many questions about the hospital an how i am. The important thing to remember is as long as you do what the doctor says or what you think is best for her, she will have a wonderful life an do anything anyone else can. But don't be scared there nothing to be scared of we all need food an exercise your daughter just needs tablets an physio an exercise as well. An it is ok to cry sometimes.

Posted By : MommatoLS - 8/10/2010 3:42 PM
Well, a little better visit today and feeling better.  The doctor is pleased with our little girl thus far.  She gained 4oz between Thursday and yesterday.  He said on average they want to see about 30 grams per day and she averaged out to about 30.25 grams!  Woohoo!!!  No enzyme therapies yet and at this point very little to do except minor chest pt to get her mommy and daddy in a routine!  He also wants us to give her a bit of salt everyday.  So, thus far a healthy baby girl and hopefully I can keep her that way as long as possible!  Thanks for the kind words of encouragement so far!  Still scared but know that she will be ok with our proactive care and love!!!
Momma to LS

Posted By : midge-lea - 3/9/2011 5:17 PM
hi, sorry to hear it was positive for CF, although as previously said things can be fine and im sure your used to the routines by now and coping just fine :) you'l always have times when you want to cry about it, as a parent it must be difficult, my mom was terrible for it she always blamed herself, eventhough there was no way she could have known, none of this is your fault these things just come along to test us, when your daughter gets older it would be wise to give her some controll, but always pay attention, i had controll but was sure there was nothing wrong with me so didnt do any of my physio or take my medication for a long time, it was only when i became ill that i realised i needed to be doing something about it. your daughter will always need your help and support but she will come to you of her own choice :)
as for your husband, maybe he is miserable with you when you cry, but this is probabilly cos he doesn't know how to show is emotion/frustration with the situation, you have all rights to get upset and should probabilly talk to your husband about how your feeling.
take care xxx

Posted By : MSretiree - 4/10/2011 2:39 PM
My son is 45. He goes into hospital 1-2 times a year for "clean out." CF is a nasty disease, but progress IS being made. Don't give up hope. We felt the same way when our perfect baby was diagnosed with a condition I had never hear of. Hang in there and love her extra.

Posted By : ~August~ - 7/8/2011 11:55 PM
Hi, I'm April (or August) and I'm 18 years old with CF (and a new member of this particular forum). I can't imagine what it is like being told your child isn't "just fine". But I think you're a good mom and will be able to get through these next few months okay. I just wanted to say that what is out there on the internet information wise is really not accurate. Like, it never shows the people who go to college and have productive jobs despite this disease- it always just seems to be the two extremes. Either "Oh I've never really had an issue with CF" (unfortunately it has a way of catching up with people.. no one has the genes and not the disease.) Or "My life is terrible and blah blah blah"
My life probably involves 3 or so hours of medical treatments a day and it's hard and it stinks, but the truth is- my family and friends and I have pulled through this together and even though my case is by no means "mild" I still see myself at 70 holding hands with my husband watching the sunset (from our 5 story Malabu Beach house... tehehe)
I don't play the "Oh be glad it's not ____ " game, and I'm not saying it won't be a hard and trying road ahead for you guys but keep your chin up- there are people living with this disease. And I don't mean warm bodies living- I mean, marathon-running, mountain-climbing, company-owning living.
But in the mean time,
I always thought this was a really helpful poem that kind of says everything that needs to be said- in case the link doesn't work it's called "Welcome to Holland"

And if it helps (and because I like bragging about me sometimes too) I'm heading off to college in a few weeks. CF and all. And my parents are staying 700 miles behind (and like any real teenager I am so so glad to be going far far away.)

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