Please Help - Syracuse,NY

Hi D., I'm J. and I have 3 kids with the cystic fibrosis gene. When I had my eldest son, they told me that he may have it, I was just as terrified as you are.So we live in binghamton, ny and we had to take him to university hospital in syracuse,ny when he was 2 months old to have something called the 'sweat test' done. I took him in,they rolled up his sleeves and they put this thing on him what almost kinda looked like a wrist watch toy. it goes on just like a watch they set it and turn it on and then I do believe it takes about 45 minutes. You keep in on the babies arm and it makes him sweat..then they take the sweat and test it to see if he has it. Which all 3 of my kids have the gene but not the disease. I was told that when my kids have there own kids there kids will have the disease. My husband and I both have the gene for it but apparently his gene is stronger according to the drs. I just had another baby boy on dec 6 and we have an appt with the same drs again at the hospital in syracuse I just mentioned to get his test done. When that test is done they give the baby a physical, which is much like the one his reg dr would give him and they look at other things too. But this whole process takes darn near the whole day. And then you have to wait I think a week for the results. They do this testing at birth I guess to see what the baby might have. Thats why they prick the babies feet when there in the nursery. I wouldn't be freaked out to much about it. Only because if your child did have it they would have really alarmed you about it. I think thats really all I cam tell you about it that I can remember, hang in there, I hope I helped. My daughter is 5 1/2 yrs old, my son is 3 yrs old. And i have a newborn which is 6 weeks old and they are doing just fine. If you would like to discuss anymore concerns with me please feel free to email me at ____@____.com I would be more than happy to talk with you.

1 mom found this helpful

I can relate a little bit b/c I found out I was a CF carrier when I was pregnant with my DD. Are you and your husband/daughter's father both carriers? If not, the chances are super slim that she could have CF. It will be hard but try not to worry too much until you have more answers. Good luck!

D.,

My best advice to you at this point is to slow down. May is a little word with a whole lot of meaning. She MAY be a genius, and she MAY grow up to become president. Then again, she MAY not. There is also a world of difference between HAVING cystic fibrosis, and CARRYING the gene for it. That second one isn't an issue for her at all until it's time to decide if she wants to have kids of her own.

It sounds like you need to have further testing done. Talk to the pediatrician, or the specialist who gave you this information. Ask for a complete walk-through of all the upcoming steps to determine a diagnosis. Make them go slow, and explain each part until you are completely confident you understand. The Doctors work for you. They are paid service providers, no different than a plumber or hairstylist. They provide a service, and you give them money. That's it. If you don't like the service they are providing, or their attitude while they do it, fire them and hire someone else. DO NOT let them intimidate you, or rush you. You are in the driver's seat here.

Once you find out where your daughter stands, then it is time to get educated. If she has CF, there are great resources on the Net that will explain her condition, the prognosis, and all of the issues with her care. You can also turn to the web for help finding other Moms who have dealt with this same thing, and can help you out. Even a special needs parents' suport group will be a great resource, because those people know the feelings of fear and helplessness that comes with dealing with this kind of challenge.

Hold on D.. I can't imagine a fear in the world more potent than a sick child. My heart goes out to you, and I hope for the very best results from the upcoming tests.

I am CF carrier and my two brothers had/have CF. My DH is not a carrier so my daughter can not have CF (she was tested) but may be a carrier. I know a quite deal about CF if you have any questions. They have made great strides in CF treatments if God forbid your daughter does have it. Take it one day at a time. For now....enjoy you daughter.

D.

My son had that happen when he was about 4 weeks old. We had to bring him to the childrens hospital where they did a "sweat test" which came out negative. The doctor had told me that any kind of stress to the child can show in the first test that there might be a possibility.

Although I can not relate to your situation my heart goes out to you. I am wishing for the best for you.

Don't panic just yet. My godsdaughterhad the same experience and everything turned out fine. She was neither a carrier nor did she actually have CF. I don't recall the actual problem (going back 5 yrs ago-I will call my friend though, but regardless she is healthy as can be. I will post again with explanation!

hi D., i dont know anything about this, i just remember you and feel so bad that you are having such a rough start. i just wanted to say that i am pulling for you, and to remember that lots of these tests turn out to be nothing. best of luck to you, hang in there, D.

Hi D.,
I certainly can understand why you would be terrified about this! I work in the medical field so I can maybe tell you a little bit about this even though I have not faced this situation myself. Children with CF have a much better chance of survival today than they did even a few years ago. There are new therapies and medications that greatly improve the quality of life for CF sufferers. But don't despair yet that your daughter has the disease. There is a big difference between carrier of CF and having CF. A carrier can mean that she can potentially pass the disease on to her own children but WILL NOT be sick with CF herself. For her to be a carrier both you and her father had to either have CF or be carriers. An afflicted child has to get a CF gene from both father and mother to have the disease. Your pediatrician must have had a concern if they tested for CF. Do either you or her father have CF or are you known carriers? Anyone in either of your families with CF? A pediatrician may have wanted to test if if she was having feeding problems or failing to gain weight or trouble breathing or with cough. Check out this web page from WebMD, it may answer some more of your questions. http://www.webmd.com/content/article/7/1680_53769.htm. In the meantime I will say a prayer for your daughter that she is well. Be strong and continue to seek support from others who may know first hand what you are going through. This website may offer other suggestions for seeking support: http://www.cysticfibrosis.com/. Best of luck. M.

Hi D.,

YES! I totally understand what u are going through. When I was pregnant with my son it came back that I was a carrier for CF. I was so scared because, at the time I had never heard of CF before. My husband had to also get tested to see if he was a carrier (2 carriers can mean that the baby will have CF, while only 1 carrier simply means that the child MAY be a carrier). Anyway, the tests came back that my husband wasn't a carrier. Were u tested for it when u were pregnant? Why were they testing her anyway?

Don't worry too much (I know it is easier said then done) but she is probably simply a carrier like myself (and this simply means that when she has children she will have to make sure that he husband isn't a carrier).

I hope everything works out for u and your precious little girl.

C.

We also went through this when my son was born. We were sent for more testing... a blood test and a sweat test for the baby and blood test for my husband and I. The wait was awful and 2 months long but he is a carrier. I was scared to death but often the kids are just carriers ( a large portion of us are and had no idea). Good luck, hang in there, and think positive!

D.,
I have just finished that test myself with my 29 month old daughter.
What tests have been done thus far?
Keep your chin up...
--T.