Hi, a lovely woman called Sarah suggested I repost my questions in the "Family" area...Here it goes:
Our family has been on a rough journey since finding many little things with our grand daughter to be "off." Currently we have an appointment to have her checked for Rett Syndrome, but after going to the GI specialist yesterday, and the doctor constantly asking questions about many things specific to CF, I am not sure what to do. We have been to a geneticist, and her tests are not back yet. They are looking for large deletions throughout the DNA. The doctor has also asked questions specific to CF. Yet none have come out and said those words. This confuses me, but maybe they don't want to unnecessarily alarm me.
Anyway, I have a few questions about CF, and if anyone can address them that would be great...
Ok, I have a 10 month old grand daughter who I have custody of. She is just darling, and the love of my life. She does have developmental delays which put her at the gross and fine motor skill level of a 6 month old. She has some neurological problems too. My question (finally) is this:
Simmi after birth did have a bowel movement, but she also had rattling breathing and thick white mucus until she was about 5 months old. I used to have to clear her nose constantly because it was so thick. She used to cough, and I could hear her chest just rattle when she breathed. This seemed to resolve though. Then at 5 months, she developed really bad constipation, and we had to give her Lactoluse. From there, she also developed servere allergies to wheat, eggs, dairy in all forms, soy and peanuts. She has not had any of these things, and is currently on Neocate. In January, she got a persistant thick cough and the rattling again, and her doctor put her on prednesone and abuterol/with a nebulizer. Since then she didn't have any further problems. She does cough every day, but it doesn't sound at all thick. I have always thought it was due to reflux. Lately her stool has shreds of mucus, but not much, and she often has a thick white mucus inside the folds of her genitals and around the anus.
Is this anything that sounds familiar? I guess, a while back when I had thought about the possibility of my grand daughter having it, I kind of ruled it out because she never had any significant problems accept gastro-intestinal. Is it possible that she could have this? I have had such a hard time with doctors...I can't even begin to express that, and currently we are looking for another pediatrician for her. I have become really jaded about doctors, although I really admire and respect the geneticist. She was great.
I would really like to talk to someone about this. What I have found online can sometimes be so generic, and I think talking to others who have CF or have children with CF is a much better source of information. I don't want to be blind-sided if the geneticist comes back in a few weeks and says that she does have CF. I want to be prepared.
Oh and also as my husband and I were talking about mucus, does any of your children get white mucus under the arms? We often find what appears to be an oily, waxy white mucus under her arms. Kind of cheesy. She used to get it in the deep creases behind her ears too. When she sweats she breaks out in a rash on her back. We have to keep her room regulated because she gets really hot and sweats. I don't know if anyone else looks back at the weird little things that their kids did...maybe it is just us.
Thanks,
Angela
Our family has been on a rough journey since finding many little things with our grand daughter to be "off." Currently we have an appointment to have her checked for Rett Syndrome, but after going to the GI specialist yesterday, and the doctor constantly asking questions about many things specific to CF, I am not sure what to do. We have been to a geneticist, and her tests are not back yet. They are looking for large deletions throughout the DNA. The doctor has also asked questions specific to CF. Yet none have come out and said those words. This confuses me, but maybe they don't want to unnecessarily alarm me.
Anyway, I have a few questions about CF, and if anyone can address them that would be great...
Ok, I have a 10 month old grand daughter who I have custody of. She is just darling, and the love of my life. She does have developmental delays which put her at the gross and fine motor skill level of a 6 month old. She has some neurological problems too. My question (finally) is this:
Simmi after birth did have a bowel movement, but she also had rattling breathing and thick white mucus until she was about 5 months old. I used to have to clear her nose constantly because it was so thick. She used to cough, and I could hear her chest just rattle when she breathed. This seemed to resolve though. Then at 5 months, she developed really bad constipation, and we had to give her Lactoluse. From there, she also developed servere allergies to wheat, eggs, dairy in all forms, soy and peanuts. She has not had any of these things, and is currently on Neocate. In January, she got a persistant thick cough and the rattling again, and her doctor put her on prednesone and abuterol/with a nebulizer. Since then she didn't have any further problems. She does cough every day, but it doesn't sound at all thick. I have always thought it was due to reflux. Lately her stool has shreds of mucus, but not much, and she often has a thick white mucus inside the folds of her genitals and around the anus.
Is this anything that sounds familiar? I guess, a while back when I had thought about the possibility of my grand daughter having it, I kind of ruled it out because she never had any significant problems accept gastro-intestinal. Is it possible that she could have this? I have had such a hard time with doctors...I can't even begin to express that, and currently we are looking for another pediatrician for her. I have become really jaded about doctors, although I really admire and respect the geneticist. She was great.
I would really like to talk to someone about this. What I have found online can sometimes be so generic, and I think talking to others who have CF or have children with CF is a much better source of information. I don't want to be blind-sided if the geneticist comes back in a few weeks and says that she does have CF. I want to be prepared.
Oh and also as my husband and I were talking about mucus, does any of your children get white mucus under the arms? We often find what appears to be an oily, waxy white mucus under her arms. Kind of cheesy. She used to get it in the deep creases behind her ears too. When she sweats she breaks out in a rash on her back. We have to keep her room regulated because she gets really hot and sweats. I don't know if anyone else looks back at the weird little things that their kids did...maybe it is just us.
Thanks,
Angela