Freaking Out Over Clinic Visit....Help

NanaOf8GirlsAndCounting · May 8, 2009

I totally agree with Nightwriter. My granddaughter now 11mos old was recently put on Singulair and steriods due to her last testing. At first they would not listen to us regarding the asthma or allergys but now they have come around. Now they are saying YES to both and have added meds to treat this. She just has started the meds and hopefully we will see improvements soon.

NanaOf8GirlsAndCounting · May 8, 2009

I totally agree with Nightwriter. My granddaughter now 11mos old was recently put on Singulair and steriods due to her last testing. At first they would not listen to us regarding the asthma or allergys but now they have come around. Now they are saying YES to both and have added meds to treat this. She just has started the meds and hopefully we will see improvements soon.

NanaOf8GirlsAndCounting · May 8, 2009

I totally agree with Nightwriter. My granddaughter now 11mos old was recently put on Singulair and steriods due to her last testing. At first they would not listen to us regarding the asthma or allergys but now they have come around. Now they are saying YES to both and have added meds to treat this. She just has started the meds and hopefully we will see improvements soon.

NanaOf8GirlsAndCounting · May 8, 2009

I totally agree with Nightwriter. My granddaughter now 11mos old was recently put on Singulair and steriods due to her last testing. At first they would not listen to us regarding the asthma or allergys but now they have come around. Now they are saying YES to both and have added meds to treat this. She just has started the meds and hopefully we will see improvements soon.

NanaOf8GirlsAndCounting · May 8, 2009

I totally agree with Nightwriter. My granddaughter now 11mos old was recently put on Singulair and steriods due to her last testing. At first they would not listen to us regarding the asthma or allergys but now they have come around. Now they are saying YES to both and have added meds to treat this. She just has started the meds and hopefully we will see improvements soon.

Nightwriter · May 8, 2009

Cheryl,

I really should make a collection of posts like yours. Once again, a family member has educated themselves in the area of asthma and allergies and have insisted to their doctors that this is an area that needed to be addressed. Especially in a child that had been repeatedly sick with out satisfactory results.

The doctors see a diagnosis of CF and they don't look beyond that. They are unaware that asthma/allergies/chemical sensitivities are a contributing and controllable source of this disease. This is not in the textbooks. There aren't many studies on the environment and it's effect on CF, and they are just studying this area.

I am seeing more and more on this site, people bringing this information to their doctors or seeking second opinions. And they are seeing improvements.

Cheryl's post is important for those people whose child is getting sick over and over -- that there is always SOMETHING more that can be done.

Nightwriter · May 8, 2009

Cheryl,

I really should make a collection of posts like yours. Once again, a family member has educated themselves in the area of asthma and allergies and have insisted to their doctors that this is an area that needed to be addressed. Especially in a child that had been repeatedly sick with out satisfactory results.

The doctors see a diagnosis of CF and they don't look beyond that. They are unaware that asthma/allergies/chemical sensitivities are a contributing and controllable source of this disease. This is not in the textbooks. There aren't many studies on the environment and it's effect on CF, and they are just studying this area.

I am seeing more and more on this site, people bringing this information to their doctors or seeking second opinions. And they are seeing improvements.

Cheryl's post is important for those people whose child is getting sick over and over -- that there is always SOMETHING more that can be done.

Nightwriter · May 8, 2009

Cheryl,

I really should make a collection of posts like yours. Once again, a family member has educated themselves in the area of asthma and allergies and have insisted to their doctors that this is an area that needed to be addressed. Especially in a child that had been repeatedly sick with out satisfactory results.

The doctors see a diagnosis of CF and they don't look beyond that. They are unaware that asthma/allergies/chemical sensitivities are a contributing and controllable source of this disease. This is not in the textbooks. There aren't many studies on the environment and it's effect on CF, and they are just studying this area.

I am seeing more and more on this site, people bringing this information to their doctors or seeking second opinions. And they are seeing improvements.

Cheryl's post is important for those people whose child is getting sick over and over -- that there is always SOMETHING more that can be done.

Nightwriter · May 8, 2009

Cheryl,

I really should make a collection of posts like yours. Once again, a family member has educated themselves in the area of asthma and allergies and have insisted to their doctors that this is an area that needed to be addressed. Especially in a child that had been repeatedly sick with out satisfactory results.

The doctors see a diagnosis of CF and they don't look beyond that. They are unaware that asthma/allergies/chemical sensitivities are a contributing and controllable source of this disease. This is not in the textbooks. There aren't many studies on the environment and it's effect on CF, and they are just studying this area.

I am seeing more and more on this site, people bringing this information to their doctors or seeking second opinions. And they are seeing improvements.

Cheryl's post is important for those people whose child is getting sick over and over -- that there is always SOMETHING more that can be done.

Nightwriter · May 8, 2009

Cheryl,
 
 I really should make a collection of posts like yours. Once again, a family member has educated themselves in the area of asthma and allergies and have insisted to their doctors that this is an area that needed to be addressed. Especially in a child that had been repeatedly sick with out satisfactory results.
 
 The doctors see a diagnosis of CF and they don't look beyond that. They are unaware that asthma/allergies/chemical sensitivities are a contributing and controllable source of this disease. This is not in the textbooks. There aren't many studies on the environment and it's effect on CF, and they are just studying this area.
 
 I am seeing more and more on this site, people bringing this information to their doctors or seeking second opinions. And they are seeing improvements.
 
 Cheryl's post is important for those people whose child is getting sick over and over -- that there is always SOMETHING more that can be done.

DEES4 · May 8, 2009

Thank you all so much for your responses. I have learned so much just be reading all of them.

Nightwriter,
My son is already on Singulair and when he first started taking it I noticed a difference in him. He used to wheeze all the time and now only wheezes if he is very sick. Also a couple of years ago his cf doc commented that his lung x-rays looked like those of an asthmatic. I am thinking of making an appointment with an ENT just to see what they think. His tonsils stay huge even when he is not sick. Also the nurse practicioner is the one who said that he had nasal poypls and that she could tell just be looking at him because the bridge of his nose is wide. The doctor never even mentioned the nasal polyps. So I thought maybe an ENT could give me some better answers. I just feel like we didn't get a clear answer as to what is really going on with it. As you know so much is thrown at you at the annual clinic appointment...so I just kind fo feel lost still. Anymore thoughts from you? Your post helped a lot. Thankyou.

DEES4 · May 8, 2009

Thank you all so much for your responses. I have learned so much just be reading all of them.

Nightwriter,
My son is already on Singulair and when he first started taking it I noticed a difference in him. He used to wheeze all the time and now only wheezes if he is very sick. Also a couple of years ago his cf doc commented that his lung x-rays looked like those of an asthmatic. I am thinking of making an appointment with an ENT just to see what they think. His tonsils stay huge even when he is not sick. Also the nurse practicioner is the one who said that he had nasal poypls and that she could tell just be looking at him because the bridge of his nose is wide. The doctor never even mentioned the nasal polyps. So I thought maybe an ENT could give me some better answers. I just feel like we didn't get a clear answer as to what is really going on with it. As you know so much is thrown at you at the annual clinic appointment...so I just kind fo feel lost still. Anymore thoughts from you? Your post helped a lot. Thankyou.

DEES4 · May 8, 2009

Thank you all so much for your responses. I have learned so much just be reading all of them.

Nightwriter,
My son is already on Singulair and when he first started taking it I noticed a difference in him. He used to wheeze all the time and now only wheezes if he is very sick. Also a couple of years ago his cf doc commented that his lung x-rays looked like those of an asthmatic. I am thinking of making an appointment with an ENT just to see what they think. His tonsils stay huge even when he is not sick. Also the nurse practicioner is the one who said that he had nasal poypls and that she could tell just be looking at him because the bridge of his nose is wide. The doctor never even mentioned the nasal polyps. So I thought maybe an ENT could give me some better answers. I just feel like we didn't get a clear answer as to what is really going on with it. As you know so much is thrown at you at the annual clinic appointment...so I just kind fo feel lost still. Anymore thoughts from you? Your post helped a lot. Thankyou.

DEES4 · May 8, 2009

Thank you all so much for your responses. I have learned so much just be reading all of them.

Nightwriter,
My son is already on Singulair and when he first started taking it I noticed a difference in him. He used to wheeze all the time and now only wheezes if he is very sick. Also a couple of years ago his cf doc commented that his lung x-rays looked like those of an asthmatic. I am thinking of making an appointment with an ENT just to see what they think. His tonsils stay huge even when he is not sick. Also the nurse practicioner is the one who said that he had nasal poypls and that she could tell just be looking at him because the bridge of his nose is wide. The doctor never even mentioned the nasal polyps. So I thought maybe an ENT could give me some better answers. I just feel like we didn't get a clear answer as to what is really going on with it. As you know so much is thrown at you at the annual clinic appointment...so I just kind fo feel lost still. Anymore thoughts from you? Your post helped a lot. Thankyou.

DEES4 · May 8, 2009

Thank you all so much for your responses. I have learned so much just be reading all of them.
 
 Nightwriter,
 My son is already on Singulair and when he first started taking it I noticed a difference in him. He used to wheeze all the time and now only wheezes if he is very sick. Also a couple of years ago his cf doc commented that his lung x-rays looked like those of an asthmatic. I am thinking of making an appointment with an ENT just to see what they think. His tonsils stay huge even when he is not sick. Also the nurse practicioner is the one who said that he had nasal poypls and that she could tell just be looking at him because the bridge of his nose is wide. The doctor never even mentioned the nasal polyps. So I thought maybe an ENT could give me some better answers. I just feel like we didn't get a clear answer as to what is really going on with it. As you know so much is thrown at you at the annual clinic appointment...so I just kind fo feel lost still. Anymore thoughts from you? Your post helped a lot. Thankyou.

Nightwriter · May 9, 2009

Dees,

This is all good news because this all means there is room for improvement. Good that he is on Sinugulair and that he responded. Good that his X-Ray looks like someone with asthma. My CT scan shows big changes that my doctor says is amazing. One of the noticeable things she says is as my asthma reduced, you can see the size of the airways have shrunk as the swelling as gone down.

Here are some questions to ask the NP who seems observant: Ask if his ears are red and his eardrum swollen. Ask if the back of his throat is red? And in addition to the suspected polyps, are his nasal passages red or otherwise occluded (swollen, partially blocked).

This opens the door for discussions of treating inflammation. My doctor says that these are in part, her clues in diagnosing my exacerbations as infection or rooted in inflammation. What goes on in the ears, nose, and throat can be an indication of how the lungs look also.

Here are some threads to get you started. You can read what I've written as well as other people's interesting ideas. The people on here are an amazing source of information.

1)Update: Inflammation, steroids... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a>2)Adults: Have you ever been tested for Asthma... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=44227&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>3)Cleaning House... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=39912
">http://www.cysticfibrosis.com/...atid=6&threadid=39912
</a>4)CF Doc gives negative... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352
">http://www.cysticfibrosis.com/...atid=6&threadid=37352
</a>5)Adults: Sinus Problems... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=39055&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>6)Families: Sinus infections... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=38741&highlight_key=y&keyword1=Sinus%20Surgery
">http://www.cysticfibrosis.com/...word1=Sinus%20Surgery
</a>

Nightwriter · May 9, 2009

Dees,

This is all good news because this all means there is room for improvement. Good that he is on Sinugulair and that he responded. Good that his X-Ray looks like someone with asthma. My CT scan shows big changes that my doctor says is amazing. One of the noticeable things she says is as my asthma reduced, you can see the size of the airways have shrunk as the swelling as gone down.

Here are some questions to ask the NP who seems observant: Ask if his ears are red and his eardrum swollen. Ask if the back of his throat is red? And in addition to the suspected polyps, are his nasal passages red or otherwise occluded (swollen, partially blocked).

This opens the door for discussions of treating inflammation. My doctor says that these are in part, her clues in diagnosing my exacerbations as infection or rooted in inflammation. What goes on in the ears, nose, and throat can be an indication of how the lungs look also.

Here are some threads to get you started. You can read what I've written as well as other people's interesting ideas. The people on here are an amazing source of information.

1)Update: Inflammation, steroids... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a>2)Adults: Have you ever been tested for Asthma... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=44227&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>3)Cleaning House... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=39912
">http://www.cysticfibrosis.com/...atid=6&threadid=39912
</a>4)CF Doc gives negative... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352
">http://www.cysticfibrosis.com/...atid=6&threadid=37352
</a>5)Adults: Sinus Problems... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=39055&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>6)Families: Sinus infections... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=38741&highlight_key=y&keyword1=Sinus%20Surgery
">http://www.cysticfibrosis.com/...word1=Sinus%20Surgery
</a>

Nightwriter · May 9, 2009

Dees,

This is all good news because this all means there is room for improvement. Good that he is on Sinugulair and that he responded. Good that his X-Ray looks like someone with asthma. My CT scan shows big changes that my doctor says is amazing. One of the noticeable things she says is as my asthma reduced, you can see the size of the airways have shrunk as the swelling as gone down.

Here are some questions to ask the NP who seems observant: Ask if his ears are red and his eardrum swollen. Ask if the back of his throat is red? And in addition to the suspected polyps, are his nasal passages red or otherwise occluded (swollen, partially blocked).

This opens the door for discussions of treating inflammation. My doctor says that these are in part, her clues in diagnosing my exacerbations as infection or rooted in inflammation. What goes on in the ears, nose, and throat can be an indication of how the lungs look also.

Here are some threads to get you started. You can read what I've written as well as other people's interesting ideas. The people on here are an amazing source of information.

1)Update: Inflammation, steroids... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a>2)Adults: Have you ever been tested for Asthma... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=44227&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>3)Cleaning House... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=39912
">http://www.cysticfibrosis.com/...atid=6&threadid=39912
</a>4)CF Doc gives negative... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352
">http://www.cysticfibrosis.com/...atid=6&threadid=37352
</a>5)Adults: Sinus Problems... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=39055&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>6)Families: Sinus infections... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=38741&highlight_key=y&keyword1=Sinus%20Surgery
">http://www.cysticfibrosis.com/...word1=Sinus%20Surgery
</a>

Nightwriter · May 9, 2009

Dees,

This is all good news because this all means there is room for improvement. Good that he is on Sinugulair and that he responded. Good that his X-Ray looks like someone with asthma. My CT scan shows big changes that my doctor says is amazing. One of the noticeable things she says is as my asthma reduced, you can see the size of the airways have shrunk as the swelling as gone down.

Here are some questions to ask the NP who seems observant: Ask if his ears are red and his eardrum swollen. Ask if the back of his throat is red? And in addition to the suspected polyps, are his nasal passages red or otherwise occluded (swollen, partially blocked).

This opens the door for discussions of treating inflammation. My doctor says that these are in part, her clues in diagnosing my exacerbations as infection or rooted in inflammation. What goes on in the ears, nose, and throat can be an indication of how the lungs look also.

Here are some threads to get you started. You can read what I've written as well as other people's interesting ideas. The people on here are an amazing source of information.

1)Update: Inflammation, steroids... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a>2)Adults: Have you ever been tested for Asthma... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=44227&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>3)Cleaning House... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=39912
">http://www.cysticfibrosis.com/...atid=6&threadid=39912
</a>4)CF Doc gives negative... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352
">http://www.cysticfibrosis.com/...atid=6&threadid=37352
</a>5)Adults: Sinus Problems... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=39055&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a>6)Families: Sinus infections... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=38741&highlight_key=y&keyword1=Sinus%20Surgery
">http://www.cysticfibrosis.com/...word1=Sinus%20Surgery
</a>

Nightwriter · May 9, 2009

Dees,
 
 This is all good news because this all means there is room for improvement. Good that he is on Sinugulair and that he responded. Good that his X-Ray looks like someone with asthma. My CT scan shows big changes that my doctor says is amazing. One of the noticeable things she says is as my asthma reduced, you can see the size of the airways have shrunk as the swelling as gone down.
 
 Here are some questions to ask the NP who seems observant: Ask if his ears are red and his eardrum swollen. Ask if the back of his throat is red? And in addition to the suspected polyps, are his nasal passages red or otherwise occluded (swollen, partially blocked).
 
 This opens the door for discussions of treating inflammation. My doctor says that these are in part, her clues in diagnosing my exacerbations as infection or rooted in inflammation. What goes on in the ears, nose, and throat can be an indication of how the lungs look also.
 
 Here are some threads to get you started. You can read what I've written as well as other people's interesting ideas. The people on here are an amazing source of information.
 
 1)Update: Inflammation, steroids... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a> 2)Adults: Have you ever been tested for Asthma... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=44227&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a> 3)Cleaning House... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=39912
">http://www.cysticfibrosis.com/...atid=6&threadid=39912
</a> 4)CF Doc gives negative... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352
">http://www.cysticfibrosis.com/...atid=6&threadid=37352
</a> 5)Adults: Sinus Problems... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=39055&STARTPAGE=1&FTVAR_FORUMVIEWTMP=Linear
">http://www.cysticfibrosis.com/...R_FORUMVIEWTMP=Linear
</a> 6)Families: Sinus infections... <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=38741&highlight_key=y&keyword1=Sinus%20Surgery
">http://www.cysticfibrosis.com/...word1=Sinus%20Surgery
</a>

Freaking Out Over Clinic Visit....Help

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