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Please help. Unable to get diagnosis
- Thread starter tmdj06
- Start date
You absolutely need to pursue CF testing and you are <b>not crazy for thinking so.</b> Switch doctors if you have to but this is a no-brainer.....
<br />
<br />mother is a carrier + baby is experiencing CF symptoms = order CF testing!!!
<br />
<br />Best wishes -- please keep us posted
<br />
<br />mother is a carrier + baby is experiencing CF symptoms = order CF testing!!!
<br />
<br />Best wishes -- please keep us posted
Well, the good news is that as of the first of December, we have yet another doctor. The CF center in our area is actually part of a much larger childrens clinic, so I figure tht the doctors at that clinic should be pretty familiar with kids with CF. Maybe more willing to order the test. I hope. I'll update once I know more. It is so difficult for us because we have to have pretty much the perfect doctor. He/she has to be familiar with autism and CF. I like both kids at one pediatrician and that can be hard to do when they are both suspected of having special needs. (Yes, my older son has been formally diagnosed with classical autism.) But, back on topic, are going to try this new doctor and hope like heck it pans out.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Well, the good news is that as of the first of December, we have yet another doctor. The CF center in our area is actually part of a much larger childrens clinic, so I figure tht the doctors at that clinic should be pretty familiar with kids with CF. Maybe more willing to order the test. I hope. I'll update once I know more. It is so difficult for us because we have to have pretty much the perfect doctor. He/she has to be familiar with autism and CF. I like both kids at one pediatrician and that can be hard to do when they are both suspected of having special needs. (Yes, my older son has been formally diagnosed with classical autism.) But, back on topic, are going to try this new doctor and hope like heck it pans out.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Well, the good news is that as of the first of December, we have yet another doctor. The CF center in our area is actually part of a much larger childrens clinic, so I figure tht the doctors at that clinic should be pretty familiar with kids with CF. Maybe more willing to order the test. I hope. I'll update once I know more. It is so difficult for us because we have to have pretty much the perfect doctor. He/she has to be familiar with autism and CF. I like both kids at one pediatrician and that can be hard to do when they are both suspected of having special needs. (Yes, my older son has been formally diagnosed with classical autism.) But, back on topic, are going to try this new doctor and hope like heck it pans out.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Well, the good news is that as of the first of December, we have yet another doctor. The CF center in our area is actually part of a much larger childrens clinic, so I figure tht the doctors at that clinic should be pretty familiar with kids with CF. Maybe more willing to order the test. I hope. I'll update once I know more. It is so difficult for us because we have to have pretty much the perfect doctor. He/she has to be familiar with autism and CF. I like both kids at one pediatrician and that can be hard to do when they are both suspected of having special needs. (Yes, my older son has been formally diagnosed with classical autism.) But, back on topic, are going to try this new doctor and hope like heck it pans out.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
Okay I think that's everything, wish me luck.
Well, the good news is that as of the first of December, we have yet another doctor. The CF center in our area is actually part of a much larger childrens clinic, so I figure tht the doctors at that clinic should be pretty familiar with kids with CF. Maybe more willing to order the test. I hope. I'll update once I know more. It is so difficult for us because we have to have pretty much the perfect doctor. He/she has to be familiar with autism and CF. I like both kids at one pediatrician and that can be hard to do when they are both suspected of having special needs. (Yes, my older son has been formally diagnosed with classical autism.) But, back on topic, are going to try this new doctor and hope like heck it pans out.
<br />Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
<br />Okay I think that's everything, wish me luck.
<br />Also, I was wondering are skin conditions sometimes a sign of CF. I haven't read anything about it online except that sometimes CF patients have softer than normal skin. Cullen has VERY soft skin and many skin allergies. (Synthetic fibers, most detergents, any foods that stay in contact with his skin and various other skin conditions, such as ringworm, very dry skin, and some other tyoe of scaly rash that I forgot the name of. Sorry, but sometimes there are just too many things at once.
<br />Okay I think that's everything, wish me luck.
I am so sorry you are going through this. I've been there!!! My son was 15 years old before he was finally diagnosed with CF. I know how awful it is to know something is wrong, and have everyone think you are "looking for a problem." UGH!!! I sincerely hope you can get someone to listen to you. I agree with everyone else. Make so much noise about it that they test him just to shut you up. If I'd known back then what I know now, I'd have done so. Please keep us posted.
Stacey
Stacey
I am so sorry you are going through this. I've been there!!! My son was 15 years old before he was finally diagnosed with CF. I know how awful it is to know something is wrong, and have everyone think you are "looking for a problem." UGH!!! I sincerely hope you can get someone to listen to you. I agree with everyone else. Make so much noise about it that they test him just to shut you up. If I'd known back then what I know now, I'd have done so. Please keep us posted.
Stacey
Stacey
I am so sorry you are going through this. I've been there!!! My son was 15 years old before he was finally diagnosed with CF. I know how awful it is to know something is wrong, and have everyone think you are "looking for a problem." UGH!!! I sincerely hope you can get someone to listen to you. I agree with everyone else. Make so much noise about it that they test him just to shut you up. If I'd known back then what I know now, I'd have done so. Please keep us posted.
Stacey
Stacey
I am so sorry you are going through this. I've been there!!! My son was 15 years old before he was finally diagnosed with CF. I know how awful it is to know something is wrong, and have everyone think you are "looking for a problem." UGH!!! I sincerely hope you can get someone to listen to you. I agree with everyone else. Make so much noise about it that they test him just to shut you up. If I'd known back then what I know now, I'd have done so. Please keep us posted.
Stacey
Stacey
I am so sorry you are going through this. I've been there!!! My son was 15 years old before he was finally diagnosed with CF. I know how awful it is to know something is wrong, and have everyone think you are "looking for a problem." UGH!!! I sincerely hope you can get someone to listen to you. I agree with everyone else. Make so much noise about it that they test him just to shut you up. If I'd known back then what I know now, I'd have done so. Please keep us posted.
<br />
<br />Stacey
<br />
<br />Stacey
I love my kids new doctor...let me repeat: I love my kids new doctor!!!!!
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
I love my kids new doctor...let me repeat: I love my kids new doctor!!!!!
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
I love my kids new doctor...let me repeat: I love my kids new doctor!!!!!
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
I love my kids new doctor...let me repeat: I love my kids new doctor!!!!!
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
I love my kids new doctor...let me repeat: I love my kids new doctor!!!!!
<br />Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
<br />Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.
<br />Cullen finally gets his testing. We are starting with a stool sample, but this is further than any docotr has agreed to go so far. He was supposed to go see this doctor on the first, but the appt. was pushed until today. I am so relieved I could dance.
<br />Not relieved that he could have CF, but relieved that he will finally be tested after fighting so long to just get to this point.