6 month old test pending

[josieshope]

Hello...My name is courtney...I am a mother of 2...a 4 year old son, Ian...and a 6 month old daughter, josie. I am writing regarding my 6 month old. Josie is showing many signs of CF...started at age 2 months with mucusy stools...and cough which has been cronic since uly 4th. Her weight is only 13 pounds 4 ounces...only 2% on the charts. She has an excessive appetitie...yet never gains. She has been breastfed only up until now. She has so many symptoms of CF...yet..there has been no case ever in my family nor my husbands family...of CF. Yet her doctor has chosen to test..and she has already undergone the xrays and went in for her blood screen today. I suppose it that comes back positive he will send her off to iowa city for the sweat test. My question is to everyone.....what are her chances...of being CF positive...if noone in my husbands family has ever been diagnosed...nor my family? I have read that so many americans are carriers yet do not realize it. Is this possible in our case? Could this be a case were my husband and I are both carriers even though noone in either of our families has ever actually shown symptoms nor been diagnosed with the disease? Our family is all trying to stay so strong...and positive....but Im looking for opinions based on facts or knowledge weather my daughter is at risk. We are praying so hard...and waiting for the results of her blood test. I guess im looking for some more positive hope.
Anyones reply would be greatly appreciated.
Thank you so much
and god bless
courtney

 

[spicyone18]

First of welcome!
When I was diagnosed there was no family history of it either on either side of the family. My mom is 1 of 6, and my dad is 1 of 4. Then I am 1 of 4 as well. There is no one esle in my family with CF. 2 of my sisters are carriers though. As far as all my aunts and uncles I dont know who is or who isn't carriers. So to anwser your question yes its a possiablitiy to be a carrier and not knowing. Anyway I hope for the best for you, and good luck!

 

[anonymous]

Hi Courtney,


Welcome to the group.. I am sorry that you are going through so much right now.. I know everything seems so nuts... Some of the symptoms that you are describing do sound like classic CF... I didn't have those symptoms when I was a baby.. I was a normal weight.. I just had pulmonary infections starting at 2 weeks old...

Yes, you can both be carriers and not have had anyone in your family present with the disease. In my own family though my dads sister died of an unknown pumonary disease at the age of 2 ( that was a long time ago) but they never tested for CF when she was born.. I have heard of many many cases of no family history.

I will pray with you that your daughter is not a carrier.. I always thought they did the sweat test first.. In my case for several years that is all they based it on.. the sweat test is still considered the gold standard in diagnoising CF... Just so you know, just in case your child is dx with CF.. It is not a death sentence anymore.. I am 33 and wasn't even dx till I was 29.... my lungs are still in great shape.. and I live a great life...Having your child dx early if that is the case will give your child the best chance of having a good life....

Well anyway, I am sure more parents that are in your shoes will be able to help support you better, just wanted to let you know.... I will be praying with you for your child...

Jennifer
33 w/ CF and Addison's..

 

[anonymous]

Sorry to hear about what your sweet daughter (and family) are going through. When my daughter was diagnosed four years ago we did not have family history. I come from a large family with 33 first cousins. I have heard that around 80% of newly diagnosed families do not have family history of the disease. The diagnosis for my newborn daughter was difficult, but a blessing as well. We then had the enzymes that her body needed to gain weight. The medications for her lungs have kept her healthy.

It is really hard to say what the chances are that your precious Josie has cf. The best thing is to have the sweat test done at an approved cf clinic/hospital. I will also be praying for a negative test.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

First big hugs to you all. I am suprised that the doctor ordered a blood test before a sweat test but either way, I hope you are able to get results soon. I have a 2 year-old daughter, Sydney, with CF and there are no other cases of CF in our family. I think in most cases it comes as a total shock, we were definately shocked. Sydney was diagnosed just after her first b-day with a sweat test. Her blood test only found one mutation but we recently did a more comprehensive test (through a company called Quest) that was able to identify her second mutation. The stats are something like 1 in 25 is a carrier making 1 in 400 marriages a joining of 2 carriers. Not trying to be the bearer of bad news because there really is a lot to be hopeful for - Josie may not end up having CF AND if she does, there are a lot of great new treatments out there and even more good treatments to come in the future.

Take Care and let us know what you find out!

Hugs,
Kelli (mom of Sydney 2wcf)
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>

 

[ashton2005]

welcome to the site.. Once again here is a case where there is no family history... As everyone here knows but i will kind of tell you.. They tested me prenatally at about 24 weeks and found out that i was a carrier and then they tested my husband and found out that he was a carrier and neither of our families have any known history.. we will be getting people tested due to having cousins that will soon be having children.. I had an amnio done and it came back that ashton had the df508 gene and he is now in the NICU here in indiana and will be there approx 3-4 more weeks we are waiting on the last surgery to re connect his bowel... Hopefully you get all the answers that you need and can get started on treatments.. we will be thinking of you..

christi
ashtons mom 4 1/2 weeks old

 

[anonymous]

yes if your daughters test for cf is positve u and your husband are carriers 4 cf without a doubt i have a 2 month old diagnoised with cf from from birth he has both mutations lung and pancress i have a very healthy 9 year old with a diffrent dad i never thought i had a genetic glitch he is in intensive care as of today with phamonia i cant belive it happend so fast i want to know if anyone has a infant with the severity of cf as i do a child that has had it since then and will share

 

[anonymous]

Hi I have never written in here before - so hopefully I'm doing it right. I have an eight year old boy with cf. He was diagnosed when he was 6 months old - weighed 13 pounds and was not gaining well. He was in the hospital at 8 weeks old too, but thought it was bronchitis and rsv. I was devastated when Tanner was diagnosed - I cryed for 3 days and was sick for 2. (but his pediatrician told us he'd live to be a teenager - which we know now is not true). He does really well! And we decided there are many worse disease out there!! No one ever realizes that there is anything wrong with him. Just keep them active and he does percussion and albuteral treatments daily - which is just apart of his life. We didn't think we had any in our family either - but then my Dad traced back to 2 cousins that died when dad was really young and they both had cf. But things have really changed and they can live much better now. My son loves sports and can eat whatever he wants!! We love him more than anything. We also have a healthy 9 year old girl.

 

[julie]

last poster,

welcome to the site. You posted "just right" as that seemed to be your concern. Just wanted to say hello.

 

[josieshope]

Thank you to everyone for replying and the warm welcomes. Thank you also for prayers and thoughts. Everyones input has been very helpful. We appreciate replies and no matter the outcome of our daughters testing...CF will always be a part of our lives.