Any advice??

amyr · Mar 11, 2008

Don't ever take what they say at face value. That's my opinion. I lost my sister 13 yrs ago b/c the dr's just couldn't figure out what was wrong. They had my parents convinced alot of her symptoms were in her head and her only problems were allergies. Well now 3 out of 4 of my children are following in her footsteps. One had a sweat of 49 and the other two 25 and 26. Why they didn't suspect CF back then is beyond me. She fit the mold!

I won't stop until we figure out what is wrong. I pray it's not CF but if it is then we know what to do. I have learned you have to be their advocate and don't settle!! Insist that they run the full Ambry test. There are plenty of Dr's out there keep looking until you find one who LISTENS to you!

Just an FYI my allergist said to me the other day nasal polyps and children more often than not indicate CF. I hope your daughter falls into the Not catagory but it's your right as her parent to insist on the test. Good luck!!

Amy

amyr · Mar 11, 2008

Don't ever take what they say at face value. That's my opinion. I lost my sister 13 yrs ago b/c the dr's just couldn't figure out what was wrong. They had my parents convinced alot of her symptoms were in her head and her only problems were allergies. Well now 3 out of 4 of my children are following in her footsteps. One had a sweat of 49 and the other two 25 and 26. Why they didn't suspect CF back then is beyond me. She fit the mold!

I won't stop until we figure out what is wrong. I pray it's not CF but if it is then we know what to do. I have learned you have to be their advocate and don't settle!! Insist that they run the full Ambry test. There are plenty of Dr's out there keep looking until you find one who LISTENS to you!

Just an FYI my allergist said to me the other day nasal polyps and children more often than not indicate CF. I hope your daughter falls into the Not catagory but it's your right as her parent to insist on the test. Good luck!!

Amy

amyr · Mar 11, 2008

Don't ever take what they say at face value. That's my opinion. I lost my sister 13 yrs ago b/c the dr's just couldn't figure out what was wrong. They had my parents convinced alot of her symptoms were in her head and her only problems were allergies. Well now 3 out of 4 of my children are following in her footsteps. One had a sweat of 49 and the other two 25 and 26. Why they didn't suspect CF back then is beyond me. She fit the mold!

I won't stop until we figure out what is wrong. I pray it's not CF but if it is then we know what to do. I have learned you have to be their advocate and don't settle!! Insist that they run the full Ambry test. There are plenty of Dr's out there keep looking until you find one who LISTENS to you!

Just an FYI my allergist said to me the other day nasal polyps and children more often than not indicate CF. I hope your daughter falls into the Not catagory but it's your right as her parent to insist on the test. Good luck!!

Amy

amyr · Mar 11, 2008

Don't ever take what they say at face value. That's my opinion. I lost my sister 13 yrs ago b/c the dr's just couldn't figure out what was wrong. They had my parents convinced alot of her symptoms were in her head and her only problems were allergies. Well now 3 out of 4 of my children are following in her footsteps. One had a sweat of 49 and the other two 25 and 26. Why they didn't suspect CF back then is beyond me. She fit the mold!

I won't stop until we figure out what is wrong. I pray it's not CF but if it is then we know what to do. I have learned you have to be their advocate and don't settle!! Insist that they run the full Ambry test. There are plenty of Dr's out there keep looking until you find one who LISTENS to you!

Just an FYI my allergist said to me the other day nasal polyps and children more often than not indicate CF. I hope your daughter falls into the Not catagory but it's your right as her parent to insist on the test. Good luck!!

Amy

amyr · Mar 11, 2008

Don't ever take what they say at face value. That's my opinion. I lost my sister 13 yrs ago b/c the dr's just couldn't figure out what was wrong. They had my parents convinced alot of her symptoms were in her head and her only problems were allergies. Well now 3 out of 4 of my children are following in her footsteps. One had a sweat of 49 and the other two 25 and 26. Why they didn't suspect CF back then is beyond me. She fit the mold!
 
 I won't stop until we figure out what is wrong. I pray it's not CF but if it is then we know what to do. I have learned you have to be their advocate and don't settle!! Insist that they run the full Ambry test. There are plenty of Dr's out there keep looking until you find one who LISTENS to you!
 
 Just an FYI my allergist said to me the other day nasal polyps and children more often than not indicate CF. I hope your daughter falls into the Not catagory but it's your right as her parent to insist on the test. Good luck!!
 
 Amy

concernedmom · Mar 11, 2008

I was told the same thing as amyr - polyps in a young child was a strong indicator of CF. I agree with everyone else - push for Ambry's full sequencing test, including looking for deletions. Sphenoid sinus infections in a child that young are also NOT the norm. (I have a sinus kid). And, if your pulmo's not with an accredited CF center, find the closest one to your home and push your pedi for a referral there. If he won't give it, call the center yourself and give them the same info you've given us.

Last thing - the ciliary biopsy he's referring to is for primary ciliary dyskinesia. You can google that to learn more.

Good luck!

concernedmom · Mar 11, 2008

I was told the same thing as amyr - polyps in a young child was a strong indicator of CF. I agree with everyone else - push for Ambry's full sequencing test, including looking for deletions. Sphenoid sinus infections in a child that young are also NOT the norm. (I have a sinus kid). And, if your pulmo's not with an accredited CF center, find the closest one to your home and push your pedi for a referral there. If he won't give it, call the center yourself and give them the same info you've given us.

Last thing - the ciliary biopsy he's referring to is for primary ciliary dyskinesia. You can google that to learn more.

Good luck!

concernedmom · Mar 11, 2008

I was told the same thing as amyr - polyps in a young child was a strong indicator of CF. I agree with everyone else - push for Ambry's full sequencing test, including looking for deletions. Sphenoid sinus infections in a child that young are also NOT the norm. (I have a sinus kid). And, if your pulmo's not with an accredited CF center, find the closest one to your home and push your pedi for a referral there. If he won't give it, call the center yourself and give them the same info you've given us.

Last thing - the ciliary biopsy he's referring to is for primary ciliary dyskinesia. You can google that to learn more.

Good luck!

concernedmom · Mar 11, 2008

I was told the same thing as amyr - polyps in a young child was a strong indicator of CF. I agree with everyone else - push for Ambry's full sequencing test, including looking for deletions. Sphenoid sinus infections in a child that young are also NOT the norm. (I have a sinus kid). And, if your pulmo's not with an accredited CF center, find the closest one to your home and push your pedi for a referral there. If he won't give it, call the center yourself and give them the same info you've given us.

Last thing - the ciliary biopsy he's referring to is for primary ciliary dyskinesia. You can google that to learn more.

Good luck!

concernedmom · Mar 11, 2008

I was told the same thing as amyr - polyps in a young child was a strong indicator of CF. I agree with everyone else - push for Ambry's full sequencing test, including looking for deletions. Sphenoid sinus infections in a child that young are also NOT the norm. (I have a sinus kid). And, if your pulmo's not with an accredited CF center, find the closest one to your home and push your pedi for a referral there. If he won't give it, call the center yourself and give them the same info you've given us.

Last thing - the ciliary biopsy he's referring to is for primary ciliary dyskinesia. You can google that to learn more.

Good luck!

JORDYSMOM · Mar 11, 2008

MommyJen, welcome to the site. I'm sorry you are going through so much with your child. I do want to commend you for your diligence in trying to help your baby. You are correct - this site is awesome, and it has given me so much in the way of support and education. I'm glad you found us.

My son had so many of your daughter's symptoms. I was told asthma and allergies too. It wasn't until Jordan was 15, that we received his diagnosis. Do keep pushing for the full panel. I'm glad that the doc is treating the symptoms as if they are CF, but he/she could still be more aggressive there, in my opinion. I agree that you need to be at an accredited center, and that it needs to be one that listens to you.

Please let us know what you find out.

Stacey

JORDYSMOM · Mar 11, 2008

MommyJen, welcome to the site. I'm sorry you are going through so much with your child. I do want to commend you for your diligence in trying to help your baby. You are correct - this site is awesome, and it has given me so much in the way of support and education. I'm glad you found us.

My son had so many of your daughter's symptoms. I was told asthma and allergies too. It wasn't until Jordan was 15, that we received his diagnosis. Do keep pushing for the full panel. I'm glad that the doc is treating the symptoms as if they are CF, but he/she could still be more aggressive there, in my opinion. I agree that you need to be at an accredited center, and that it needs to be one that listens to you.

Please let us know what you find out.

Stacey

JORDYSMOM · Mar 11, 2008

MommyJen, welcome to the site. I'm sorry you are going through so much with your child. I do want to commend you for your diligence in trying to help your baby. You are correct - this site is awesome, and it has given me so much in the way of support and education. I'm glad you found us.

My son had so many of your daughter's symptoms. I was told asthma and allergies too. It wasn't until Jordan was 15, that we received his diagnosis. Do keep pushing for the full panel. I'm glad that the doc is treating the symptoms as if they are CF, but he/she could still be more aggressive there, in my opinion. I agree that you need to be at an accredited center, and that it needs to be one that listens to you.

Please let us know what you find out.

Stacey

JORDYSMOM · Mar 11, 2008

MommyJen, welcome to the site. I'm sorry you are going through so much with your child. I do want to commend you for your diligence in trying to help your baby. You are correct - this site is awesome, and it has given me so much in the way of support and education. I'm glad you found us.

My son had so many of your daughter's symptoms. I was told asthma and allergies too. It wasn't until Jordan was 15, that we received his diagnosis. Do keep pushing for the full panel. I'm glad that the doc is treating the symptoms as if they are CF, but he/she could still be more aggressive there, in my opinion. I agree that you need to be at an accredited center, and that it needs to be one that listens to you.

Please let us know what you find out.

Stacey

JORDYSMOM · Mar 11, 2008

MommyJen, welcome to the site. I'm sorry you are going through so much with your child. I do want to commend you for your diligence in trying to help your baby. You are correct - this site is awesome, and it has given me so much in the way of support and education. I'm glad you found us.
 
 My son had so many of your daughter's symptoms. I was told asthma and allergies too. It wasn't until Jordan was 15, that we received his diagnosis. Do keep pushing for the full panel. I'm glad that the doc is treating the symptoms as if they are CF, but he/she could still be more aggressive there, in my opinion. I agree that you need to be at an accredited center, and that it needs to be one that listens to you.
 
 Please let us know what you find out.
 
 Stacey

MommyJen · Mar 11, 2008

Thanks for the replies everyone! I wasn't sure if our pulmonologist was accredited or not, but I looked at the link Sdelorenzo left (thank you!) and the number for the Minneapolis Children's clinic IS our pulmonologists office number. I'm not sure if that's a relief to me or not...YAY, it's an accredited center, but that leaves me feeling even a little more uneasy about not being able to get the follow through I would have expected.

It's hard for me to see outside of the box at the moment so I really appreciate hearing other views. I seem to find that I second guess myself wondering if I'm being too pushy or unrealistic. My daughter was hospitalized for 8 days I just don't think it would have been that difficult for our pulm. to have determined what extent of testing had been done previously. I think I just quit asking because I felt like, well, he knows this disease much better than I do he must have a good reason to not feel further inquiry is necessary. Still on the same token I couldn't fiqure out what changed his mind from really looking at CF right after the bronch to pretty much disregarding it the next morning. The only thing I can think of is that he expected certain bugs to grow out of the cultures and when they didn't it swayed the direction he was going with everything. Which still is hard for me to accept because she did grow out staph in the 1st sputum culture he did in his office that's why he put her on the Cipro which she was taking until 3 days before the bronch. Ugh!! I think I could drive myself crazy trying figure out all the doctors thought processes through all of this.

Well, I will try to stand my ground at the next appt. and demand that an Ambry test be done. Thank you all for allowing me to vent to you and for all the wonderful encouragement. You are all truely appreciated.

MommyJen · Mar 11, 2008

Thanks for the replies everyone! I wasn't sure if our pulmonologist was accredited or not, but I looked at the link Sdelorenzo left (thank you!) and the number for the Minneapolis Children's clinic IS our pulmonologists office number. I'm not sure if that's a relief to me or not...YAY, it's an accredited center, but that leaves me feeling even a little more uneasy about not being able to get the follow through I would have expected.

It's hard for me to see outside of the box at the moment so I really appreciate hearing other views. I seem to find that I second guess myself wondering if I'm being too pushy or unrealistic. My daughter was hospitalized for 8 days I just don't think it would have been that difficult for our pulm. to have determined what extent of testing had been done previously. I think I just quit asking because I felt like, well, he knows this disease much better than I do he must have a good reason to not feel further inquiry is necessary. Still on the same token I couldn't fiqure out what changed his mind from really looking at CF right after the bronch to pretty much disregarding it the next morning. The only thing I can think of is that he expected certain bugs to grow out of the cultures and when they didn't it swayed the direction he was going with everything. Which still is hard for me to accept because she did grow out staph in the 1st sputum culture he did in his office that's why he put her on the Cipro which she was taking until 3 days before the bronch. Ugh!! I think I could drive myself crazy trying figure out all the doctors thought processes through all of this.

Well, I will try to stand my ground at the next appt. and demand that an Ambry test be done. Thank you all for allowing me to vent to you and for all the wonderful encouragement. You are all truely appreciated.

MommyJen · Mar 11, 2008

Thanks for the replies everyone! I wasn't sure if our pulmonologist was accredited or not, but I looked at the link Sdelorenzo left (thank you!) and the number for the Minneapolis Children's clinic IS our pulmonologists office number. I'm not sure if that's a relief to me or not...YAY, it's an accredited center, but that leaves me feeling even a little more uneasy about not being able to get the follow through I would have expected.

It's hard for me to see outside of the box at the moment so I really appreciate hearing other views. I seem to find that I second guess myself wondering if I'm being too pushy or unrealistic. My daughter was hospitalized for 8 days I just don't think it would have been that difficult for our pulm. to have determined what extent of testing had been done previously. I think I just quit asking because I felt like, well, he knows this disease much better than I do he must have a good reason to not feel further inquiry is necessary. Still on the same token I couldn't fiqure out what changed his mind from really looking at CF right after the bronch to pretty much disregarding it the next morning. The only thing I can think of is that he expected certain bugs to grow out of the cultures and when they didn't it swayed the direction he was going with everything. Which still is hard for me to accept because she did grow out staph in the 1st sputum culture he did in his office that's why he put her on the Cipro which she was taking until 3 days before the bronch. Ugh!! I think I could drive myself crazy trying figure out all the doctors thought processes through all of this.

Well, I will try to stand my ground at the next appt. and demand that an Ambry test be done. Thank you all for allowing me to vent to you and for all the wonderful encouragement. You are all truely appreciated.

MommyJen · Mar 11, 2008

Thanks for the replies everyone! I wasn't sure if our pulmonologist was accredited or not, but I looked at the link Sdelorenzo left (thank you!) and the number for the Minneapolis Children's clinic IS our pulmonologists office number. I'm not sure if that's a relief to me or not...YAY, it's an accredited center, but that leaves me feeling even a little more uneasy about not being able to get the follow through I would have expected.

It's hard for me to see outside of the box at the moment so I really appreciate hearing other views. I seem to find that I second guess myself wondering if I'm being too pushy or unrealistic. My daughter was hospitalized for 8 days I just don't think it would have been that difficult for our pulm. to have determined what extent of testing had been done previously. I think I just quit asking because I felt like, well, he knows this disease much better than I do he must have a good reason to not feel further inquiry is necessary. Still on the same token I couldn't fiqure out what changed his mind from really looking at CF right after the bronch to pretty much disregarding it the next morning. The only thing I can think of is that he expected certain bugs to grow out of the cultures and when they didn't it swayed the direction he was going with everything. Which still is hard for me to accept because she did grow out staph in the 1st sputum culture he did in his office that's why he put her on the Cipro which she was taking until 3 days before the bronch. Ugh!! I think I could drive myself crazy trying figure out all the doctors thought processes through all of this.

Well, I will try to stand my ground at the next appt. and demand that an Ambry test be done. Thank you all for allowing me to vent to you and for all the wonderful encouragement. You are all truely appreciated.

MommyJen · Mar 11, 2008

Thanks for the replies everyone! I wasn't sure if our pulmonologist was accredited or not, but I looked at the link Sdelorenzo left (thank you!) and the number for the Minneapolis Children's clinic IS our pulmonologists office number. I'm not sure if that's a relief to me or not...YAY, it's an accredited center, but that leaves me feeling even a little more uneasy about not being able to get the follow through I would have expected.
 
 It's hard for me to see outside of the box at the moment so I really appreciate hearing other views. I seem to find that I second guess myself wondering if I'm being too pushy or unrealistic. My daughter was hospitalized for 8 days I just don't think it would have been that difficult for our pulm. to have determined what extent of testing had been done previously. I think I just quit asking because I felt like, well, he knows this disease much better than I do he must have a good reason to not feel further inquiry is necessary. Still on the same token I couldn't fiqure out what changed his mind from really looking at CF right after the bronch to pretty much disregarding it the next morning. The only thing I can think of is that he expected certain bugs to grow out of the cultures and when they didn't it swayed the direction he was going with everything. Which still is hard for me to accept because she did grow out staph in the 1st sputum culture he did in his office that's why he put her on the Cipro which she was taking until 3 days before the bronch. Ugh!! I think I could drive myself crazy trying figure out all the doctors thought processes through all of this.
 
 Well, I will try to stand my ground at the next appt. and demand that an Ambry test be done. Thank you all for allowing me to vent to you and for all the wonderful encouragement. You are all truely appreciated.

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