I agree with Renee--what you have to look forward to is much, much better health for all three of your children, now that they have been properly diagnosed and can get appropriate treatment...thanks to you. You should feel so proud of yourself that you forced this issue and refused to be intimidated by the medical establishment. This will forever serve you and your children well. If you can get through the shock and the chaos, life will improve as their health improves. I have been through a lot of doctors, because of my daughter and also because I have had cancer. Trust me, there are doctors out there who really listen and even some who apologize when they make a mistake.
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my 3 children tested positive
- Thread starter Jenni
- Start date
I know it is hard. My son was diagnosed last year at 2 years of age after 1 of fighting illnesses. I can say, now that he is being treated, he is a different child. He has 2 rare mutations and they hope a more mild strain but does suffer with pulmonary issues. So far, treatments are working great. Just know that now that your children are diagnosed, as hard as it is, they will feel better. Yes, the future of CF in your child is unknown but every little cold should not be the end of the world for you. Make sure you are going to a certified CF center and you have a good support system. In terms of the cost, make sure you work with your CF center social worker and get applications for Medicaid. Yes Medicaid. I did not want to apply at first because I felt that I didn't need it. We make a good living and have insurance. My co-pays were costing me about $100/month in prescriptions and doctors visits and this did not count when he would get sick. Your children qualify because they have CF and once you are approved, you pay nothing. It is wonderful and has saved my sanity. Don't feel bad about taking this, that is why it is there.
berrysgirl
New member
My daughter is 17 and diagnoised three weeks ago I know what your going threw and I am so sorry.
Jenni,
I am so sorry to hear your news, I know it will be a very hard time to adjust to the situation. Especially finding out that all 3 of your children have CF. If you need any questions answered I will try to help, my son Brady is 4 years old and was diagnosed when I was 7 months pregnant, he has had a very hard road and has been thru alot, so I may beable to help. We have 4 children, I had a son from a previous marriage and my husband had a daughter from a previous marraige. We met when they were 2 & 3 and they are now 12 & 13, my 12 year old son is a carrier. We then had 2 children together and Brady is now 4 years old with CF ( close in age to your kids) and we have a 3 year old with no cf, but she has a rare chromosome disorder (like a 1 in 6 million chance) a deletion of 9q 21.2 q 22.1. She is VERY delayed, has sensory issues, doesn't speak, poor eye sight, behavior problems, and will probably live with us forever. There is little documentation about her disorder, but major organ problems usually occur, so we have our hands full. We were so happy to find thru amnio that she didn't have cf and then when she was about a year old we found out she had this instead, so I know what you are going thru as far as going thru the depression. My email address is akforwerck@verizon.net, and just put cystic fibrosis in the subject, I would love to talk with you.
Take Care and we'll be thinking of you!
Angie
I am so sorry to hear your news, I know it will be a very hard time to adjust to the situation. Especially finding out that all 3 of your children have CF. If you need any questions answered I will try to help, my son Brady is 4 years old and was diagnosed when I was 7 months pregnant, he has had a very hard road and has been thru alot, so I may beable to help. We have 4 children, I had a son from a previous marriage and my husband had a daughter from a previous marraige. We met when they were 2 & 3 and they are now 12 & 13, my 12 year old son is a carrier. We then had 2 children together and Brady is now 4 years old with CF ( close in age to your kids) and we have a 3 year old with no cf, but she has a rare chromosome disorder (like a 1 in 6 million chance) a deletion of 9q 21.2 q 22.1. She is VERY delayed, has sensory issues, doesn't speak, poor eye sight, behavior problems, and will probably live with us forever. There is little documentation about her disorder, but major organ problems usually occur, so we have our hands full. We were so happy to find thru amnio that she didn't have cf and then when she was about a year old we found out she had this instead, so I know what you are going thru as far as going thru the depression. My email address is akforwerck@verizon.net, and just put cystic fibrosis in the subject, I would love to talk with you.
Take Care and we'll be thinking of you!
Angie