Beither1980
New member
I’m scared that my 4 years old daughter could be having cystic fibrosis. People that I talked with and that I told about this, told me that this is impossible, too young to have something like this, even doctors don’t do anything in order to help my daughter and I’m very scared now about what should I do, I have had cystic fibrosis when I was younger and I think that my daughter has the same. Everything started when she started to have problems with her tonsils and problems with asthma. At the beginning I wasn’t scared because I thought it was something like cold and that’s why she have had this but after this, sometime later, everything changed. We talked with our doctor and he told us to remove the tonsils, I agreed and I was positive to this change, besides I’m working as a nurse so I do know a little bit about all this. We removed them but everything seemed to be worse than how it was before this and I got shocked. I knew that actually this could happen to babies, and when my daughter started to feel worse I immediately remembered that there is such a possibility. The first thing that happened to her is that she wasn’t able to poop, it’s hard for her, she could stay in toilet for hours and sweat all over and become red because she tried to do this many times, she told me that she feels like she wants to poop but she is not able to do this in any way.
We tried everything and I thought about different things that could happened to her, of course at the beginning I thought that it could be linked with some food but the thing is that we didn’t changed our diet, since her first days of her life we found out that she is not tolerable to lactose and our doctor introduced us in her new diet that should be one for a very long time, I didn’t changed anything in her diet, and this strange thing that she can’t poop made me understand that there is something wrong, something should be changed. Even if we removed her tonsils she continued to cough and this is not a normal cough, it’s full of mucus and it irritates her very much. I started to have nightmares during the night and I understand that this is a very stressing situation for her, and trust me, for me too as being her mother and a nurse that cannot help her own baby. I started to sleep 2 hours during the night because I observed that during the night she has shortness of breath and the first time that I found this I was so scared, it seemed to me like she can’t breathe normally and i couldn’t sleep normally during the night knowing that there can happen something with her. The constipation became a normal thing for my daughter but another thing that was a really nightmare for her was the gas that wasn’t a normal one when you just have to do this and that’s all, she started to have some serious problems with it, insupportable pain, and she cries all the time, she feel so bad and I don’t know what to do, the usual drug that I was used to bring her doesn’t help her anymore and I’m scared to do something by my own…
I talked with my doctor but trust me he did nothing for this, like it’s not important for him. approximately 3 weeks after she started to feel bad she lost a lot of weight and she is made out of only bones now. The problems is that she eats a lot, more that a normal baby and sometimes it seems to me that she eats more that an adult. I wouldn’t be so scared that I would know that she lost all her weight because is not able to eat, but she eats a lot of food and she feels so bad because she feels like she need to eat.. Problems starts that she is constipated and all the things that she eats she can’t eliminate. I don’t know if the thing with eating too much food provoked her stomach pain, but some days ago we observed this thing. I’m so depressed and I really don’t know what to do, my daughter needs some real help and I feel like I’m a bad mother and I can’t do anything for this. I asked my doctor and I understood that he doesn’t care about my daughter, he thinks that my daughter have a cold, but he still can’t explain normally why she have all other symptoms that are not liked with the so called “ cold” that our doctor swear my daughter has. The blood level was okay and this mean that diabetes it’s aware from her, this is the only thing that makes me feel happy, the only positive thing. I don’t know people, I’m here because I really need your help, I feel like the most I wait, the most I have to pay for it and the worst my daughter feels. Please help me if you can, every type of information is very important for me!