my 6 month old

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josieshope

New member
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
 
F

folione

New member
Has Josie been tested for milk allergy? - that was something we looked into with our son when he had similar issues for his first 2 months.

As for CF, I don't want to add to your worries, but a "clear" family history is not a guarantee. I am a father to a 2 year old with CF and my CF carrier test was negative and it later turned out I have a rare variant. In our case, it took both a sweat test and complete genetic testing to reach a conclusive answer. The standard genetic tests might only be looking at 25-100 out of a far larger number of possible genetic variants that can cause CF and a sweat test by itself can be inconclusive (there's a numerical "score" on the test and in a certain range it is considered uncertain).

BUT don't forget that the important thing is to find out what is behind the problem/symptom so that you can give Josie what she needs even if you don't get the answer you want. And having CF has not stopped our son from becoming a typical 2 year old.

Meanwhile, you might want to ask your Pediatrician about trying some of the special types of baby formulas while waiting for results. We ended up using Similac Alimentum for our son
 
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anonymous

New member
Hello,
I'm sorry to hear that about your baby. I like to think postive to. I have it myself. If the worse happens your child will have emotion when your baby gets older. I do. I feel like no one in the world would feel what have. So it might nice to find someone who has cystic fibrosis.
 
H

HD

New member
My 5 year old (his name is Ian too) was diagnosed at 6 months. Neither my husband or I had any history in our families. I'm also a Family Nurse Practitioner which for some reason made it harder to accept the diagnosis at first. It was devestating, but also a relief to know what was actually wrong with him. He is 5 now and in Kindergaten in the local public school. If you need to vent, feel free to email if you don't want to post: hduncan@ix.netcom.com

I certainly will pray it is not CF and if it is that you have access to good care as well as support
 
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MOME2RT

New member
My 3 yr old was officially dx at 2 mo. w/ NO cf history also, which was VERY hard to accept! We felt like we were the bad guys "giving " this to him....like we started something. I will pray that it is NOT CF....but if it is...this is a wonderful site to come to for info & support!! I get better info here then at clinic <img src="i/expressions/face-icon-small-smile.gif" border="0"> Let us know when you find out. <img src="i/expressions/angel_ani.gif" border="0">
Leah~mommy 2 Reece w/ CF
 
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anonymous

New member
Hi Courtney

I am a mother of a CF daughter, which is now 10 years old. She was diagnois at 10 months and her and us were suffering for those ten months before because the doctor just said that she had colic. A few months before I asked my doctor if she could have CF because of my reading of her symptoms but the doctor said "No way, there is none in your family and your niece is very small also. Finally I was sent to a stomach specialist and he told me her weight is off the chart and didn't the doctor notice. He said that before they do anything to the baby, they test for CF, now I wasn't worried because my doctor said no way. Well we weren't out of the building when they came looking for us that we had to go to Boston the next day for the stress test. We went to Boston for stress test and when we got home, we received the phone call that change our life. We cried for days. The CF center at Boston has been so helpful. My daughter has only had one hospital stay which was last year. She has a PT therapist that has been coming into our home twice a week and since she has been five she has been dancing. She is know in 5 company of dance. We all feel that the dancing is what is keeping her lungs heathly.
Do all the research you can and doctors do make mistake. I wanted to believe my doctor also because we didn't have anyone in our family with it. I have two older daughter as carrier but no CF. Good Luck and God Bless.
 
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JazzysMom

New member
I cant believe what some of you moms go thru before your little ones are dx. A majority of CF dx have no known family history. Which isnt surprising considering, but the medical community shouldnt be so quick to rule it out without any testing. Especially since arloy detection can make such a difference!
 
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anonymous

New member
Hi Courtney, I have 2 boys. (1) is 5 who does not have CF & (1) who is 3 yrs & 2 months now just got diagnosed w/CF @ 2yrs & 10 months. Our life has been turned upside down for the last 4 months. When he was born he was 9lbs 4oz & 21 inches. Until this day he is in the 98% in growth & height. There is NO family history of CF in either side. The doctors CAN NOT believe it!!!! (And neither will I) They say he has a mild case of it. He has taken 2 sweat tests & both tested positve BUT a different number each time. They did do blood work & he has the common mutation. We even met with the genetics department & they said even if one of us is NOT a carrier he still has it no matter what. Because 1 gene could kill the other gene & therefore the child is given a double dose of the bad gene. Or they will have to get into paternity testing. (Which made things even worse) That's when we decided NOT to do genetics testing on me & my hausband. And the ONLY symtom he did have was that the sweat was salty.(ONLY IN THE SUMMER) He has been taking the enzyme pills, nebulizer machine, & has the vest.
I pray that you will have strengh in no matter what the outcome is because until now I am still in denial & seems like our family is falling apart. PLease let us know what happens our prayers & thoughts are with you & your family.
mother of a child w/CF
 
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anonymous

New member
A cf diagnosis is a little bit like dealing with a death. There are several states you have to go thru, denial, anger.... In our case DS was practically diagnosed at birth because of meconium illeus and having to undergo emergency surgery. There is no family history and I've searched geneology records on both sides of the family -- my father is one of 15 children -- lots of offspring, yet not one single case of CF. I too went thru denial because DS passed his sweat test with flying colors. Low 30s -- not even borderline. however his genetic testing showed homozygous delta f508 -- two copies of the delta F508 gene. It's an adjustment. It's a shock, but once you get a clear diagnosis, you can begin treating the symptoms and getting on with your lives.
 
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Gangstagurl5858

New member
hi my name is brittany and i am now 12 years old
and I am sorry to say if ur daughter has all of those signs she probly has cf and ur husband and yourself more then likly are carrers.No one in my mother or fathers side had cf.The doctors told me i wouldnt live past 9 months but im still here. I understand that it is very hard for u but just stay strong for her if u belive in god he said that their is a reason for everything.If u dont mind me asking does ur daughter have trouble breathing most of the time. i know shes only 6 months but that will be an issue If she deos I strongly suggest that she stays on oxygan.do u live in New York? I was diagnosed at 8 months but the sooner the better.And no disrespect but if u smoke dont do it because we breath in the smoke off ur cloths and it hurts our system.i know that its hard knowing that ur daughter might have cf but if u belive that shell be ok she will i kno i may sound stupid but u have to belive thats whats is keeping me alive iv been threw so much in my life but im holding on strong I dont live with my real parents im am a forster child. and have been since the age 6.and its hard growing up with out my parents and having cf so dont give up on life or ur daughter.she needs u rite now more so then ever.im gonna tell u this not to scare u or frigthin u but if your daughter has cf she will be hospitlized constantly.and she will be on so many meds.I know its hard and im sorry.If you guys need any help what so ever im here for u.u can contact me rite on here or if u have an email adress u can email me at Brittangel18@Aol.com ok good luck
 
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anonymous

New member
Hi I am replying to the mother of the little boy who is 3yrs 2 months and just got diagnosed with CF. My son is also 3 yrs 1 month. He is doing very well other than digestive. He is in the top 98% as well. He is currently on 4 enzymes and they dont seem to be helping much lately. He has been on enzymes since he was 3 weeks old. We tried to get him the vest but his doctors fought it with me and said he is too young for the vest. What kind of vest does he have. Does he have many lung problems, or been very sick? Where do you live or go to doctors? My son's doctors advised that I not work and keep him out of daycare as well as his sister who does not have CF. So therefore his lungs have been pretty healthy and has only been on Toby twice. They still require us to do PT twice a day and prescribed us a percusor to do the PT on him. They said he is too little for the vest, he is now 39 inches and 39 lbs. My email address is dawnnicolerumph@yahoo.com. I would be interested in hearing from anybody. Thank you

Dawn
son Austin--3 has CF
daughter Aly--4 1/2 does not have CF

dawnnicolerumph@yahoo.com
 
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anonymous

New member
Hi I am replying to the mother of the little boy who is 3yrs 2 months and just got diagnosed with CF. My son is also 3 yrs 1 month. He is doing very well other than digestive. He is in the top 98% as well. He is currently on 4 enzymes and they dont seem to be helping much lately. He has been on enzymes since he was 3 weeks old. We tried to get him the vest but his doctors fought it with me and said he is too young for the vest. What kind of vest does he have. Does he have many lung problems, or been very sick? Where do you live or go to doctors? My son's doctors advised that I not work and keep him out of daycare as well as his sister who does not have CF. So therefore his lungs have been pretty healthy and has only been on Toby twice. They still require us to do PT twice a day and prescribed us a percusor to do the PT on him. They said he is too little for the vest, he is now 39 inches and 39 lbs. My email address is dawnnicolerumph@yahoo.com. I would be interested in hearing from anybody. Thank you

Dawn
son Austin--3 has CF
daughter Aly--4 1/2 does not have CF

dawnnicolerumph@yahoo.com
 
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anonymous

New member
Hi Brittany,
My name is Shelly. I have 2 children, 1 with CF and 1 is a carrier. My 1st daughter was born with no problems, she was 9lbs 15 oz. My second daughter was born 5lbs 11 oz. When she was born right away they knew something was wrong with her. She was diagnosed with meconium illeus. My local hospital wasn't equipped enough with the technology and experience for this condition. They airlifted her to All Childrens. By the time we got there, they had already run a series of x-rays, blood work, upper & lower GI. They didn't see anything that was a blockage. She didn't eat for the first 5 days in the hospital. They came to us with information about CF, but told us not to worry until all the tests came back. I know how you feel, how could this happen to a child that didn't ask for it. What did we do so wrong for this to happen to her? I asked my mother ( 1 of 5 children) and asked if anyone on her side ever had this, she said no. I then called my father (1 of 15), the same answer. How could we be the only one of this size family that this happens and noone else has it. On my husbands side it was difficult because he is adopted.
 
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anonymous

New member
Hi Brittany,
My name is Shelly. I have 2 children, 1 with CF and 1 is a carrier. My 1st daughter was born with no problems, she was 9lbs 15 oz. My second daughter was born 5lbs 11 oz. When she was born right away they knew something was wrong with her. She was diagnosed with meconium illeus. My local hospital wasn't equipped enough with the technology and experience for this condition. They airlifted her to All Childrens. By the time we got there, they had already run a series of x-rays, blood work, upper & lower GI. They didn't see anything that was a blockage. She didn't eat for the first 5 days in the hospital. They came to us with information about CF, but told us not to worry until all the tests came back. I know how you feel, how could this happen to a child that didn't ask for it. What did we do so wrong for this to happen to her? I asked my mother ( 1 of 5 children) and asked if anyone on her side ever had this, she said no. I then called my father (1 of 15), the same answer. How could we be the only one of this size family that this happens and noone else has it. On my husbands side it was difficult because he is adopted.
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Brittany,

My name is Shelly. I have 2 children, 1 with CF and 1 is a carrier. My 1st daughter was born with no problems, she was 9lbs 15 oz. My second daughter was born 5lbs 11 oz. When she was born right away they knew something was wrong with her. She was diagnosed with meconium illeus. My local hospital wasn't equipped enough with the technology and experience for this condition. They airlifted her to All Childrens. By the time we got there, they had already run a series of x-rays, blood work, upper & lower GI. They didn't see anything that was a blockage. She didn't eat for the first 5 days in the hospital. They came to us with information about CF, but told us not to worry until all the tests came back. I know how you feel, how could this happen to a child that didn't ask for it. What did we do so wrong for this to happen to her? I asked my mother ( 1 of 5 children) and asked if anyone on her side ever had this, she said no. I then called my father (1 of 15), the same answer. How could we be the only one of this size family that this happens and noone else has it. On my husbands side it was difficult because he is adopted.<hr></blockquote>
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Brittany,

My name is Shelly. I have 2 children, 1 with CF and 1 is a carrier. My 1st daughter was born with no problems, she was 9lbs 15 oz. My second daughter was born 5lbs 11 oz. When she was born right away they knew something was wrong with her. She was diagnosed with meconium illeus. My local hospital wasn't equipped enough with the technology and experience for this condition. They airlifted her to All Childrens. By the time we got there, they had already run a series of x-rays, blood work, upper & lower GI. They didn't see anything that was a blockage. She didn't eat for the first 5 days in the hospital. They came to us with information about CF, but told us not to worry until all the tests came back. I know how you feel, how could this happen to a child that didn't ask for it. What did we do so wrong for this to happen to her? I asked my mother ( 1 of 5 children) and asked if anyone on her side ever had this, she said no. I then called my father (1 of 15), the same answer. How could we be the only one of this size family that this happens and noone else has it. On my husbands side it was difficult because he is adopted.<hr></blockquote>
 
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