<BR>Thank you for your post. You inspired me to not give up on a dx and today I took my DD back to the pediatrician. She is completely convinced my DD has Atypical CF and thinks will get the dx of Atypical CF as soon as our pulm returns from a conference. Our pediatrician is able to see all communications between specialists since they are all from the same pediatric hospital network. I am hoping she is right. Today my DD received her Neumomax 23 vaccine and the pediatrician suggested that we put on her Zythromax 3 times a week for an underlying infection that is not resolved. I am considering that option. I realize a dx leads to a treatment plan and without it the drs are just guessing on a treatment. My DD already has permanent lung damage, so I am feeling very compelled to find a dx to ensure that her treatment is more aggressive. I have felt so much support and encouragement from this CF community. Nearly all of these stories, experiences, and concerns match my DDs through multiple organ systems, hospitalizations, birth experiences, and now the dx process that I know this forum is where I belong. I ama better mom because of how this forum and all involved have empowered me to advocate for my child.
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Question for Beccamom
- Thread starter Mistyjo
- Start date
So eventhough the npd said no cf she can still have it? That makes me a little nervous. The nurse called today to talk to me about this test. We should be getting scheduled soon.
Beccamom, let me know what your pulm says when he/she returns. I'm still very nervous about this b/c cf is in my family and my Mom had chronic pneumonia prior to being dx with pulmonary fibrosis and sever GI probs before the lung probs started.
I will let you know when we are scheduled for the npd.
Beccamom, let me know what your pulm says when he/she returns. I'm still very nervous about this b/c cf is in my family and my Mom had chronic pneumonia prior to being dx with pulmonary fibrosis and sever GI probs before the lung probs started.
I will let you know when we are scheduled for the npd.
So eventhough the npd said no cf she can still have it? That makes me a little nervous. The nurse called today to talk to me about this test. We should be getting scheduled soon.
Beccamom, let me know what your pulm says when he/she returns. I'm still very nervous about this b/c cf is in my family and my Mom had chronic pneumonia prior to being dx with pulmonary fibrosis and sever GI probs before the lung probs started.
I will let you know when we are scheduled for the npd.
Beccamom, let me know what your pulm says when he/she returns. I'm still very nervous about this b/c cf is in my family and my Mom had chronic pneumonia prior to being dx with pulmonary fibrosis and sever GI probs before the lung probs started.
I will let you know when we are scheduled for the npd.
So eventhough the npd said no cf she can still have it? That makes me a little nervous. The nurse called today to talk to me about this test. We should be getting scheduled soon.
<br />
<br />Beccamom, let me know what your pulm says when he/she returns. I'm still very nervous about this b/c cf is in my family and my Mom had chronic pneumonia prior to being dx with pulmonary fibrosis and sever GI probs before the lung probs started.
<br />I will let you know when we are scheduled for the npd.
<br />
<br />Beccamom, let me know what your pulm says when he/she returns. I'm still very nervous about this b/c cf is in my family and my Mom had chronic pneumonia prior to being dx with pulmonary fibrosis and sever GI probs before the lung probs started.
<br />I will let you know when we are scheduled for the npd.
CF is completely ruled out. I am very relieved and yet very scared for my DD. No dx means no treatment plan. At this time my DD is only able to attend school a couple days a week. Although she feels she breathes cleaner air after chest PT we don't know why this has been effective. Her new pulmonologist has taken excellent care of her and I hope her next PFTs reflect the lung improvemetn she feels. She is gaining the weight back with supplements and a very high calorie diet, although her weight gain does not seem to be bringng her strength back. Her knees are painful and she is no longer the active child she once was. We are heading in many new directions for dx. I am fortunate to have a wonderful pediatrician tracking all of the specialists. Thanks to everyone who has supported me and encouraged me through the CF dx journey. Best wishes to everyone still looking for a dx for a sick family member. As for us we are still looking for the real Dr. House.
CF is completely ruled out. I am very relieved and yet very scared for my DD. No dx means no treatment plan. At this time my DD is only able to attend school a couple days a week. Although she feels she breathes cleaner air after chest PT we don't know why this has been effective. Her new pulmonologist has taken excellent care of her and I hope her next PFTs reflect the lung improvemetn she feels. She is gaining the weight back with supplements and a very high calorie diet, although her weight gain does not seem to be bringng her strength back. Her knees are painful and she is no longer the active child she once was. We are heading in many new directions for dx. I am fortunate to have a wonderful pediatrician tracking all of the specialists. Thanks to everyone who has supported me and encouraged me through the CF dx journey. Best wishes to everyone still looking for a dx for a sick family member. As for us we are still looking for the real Dr. House.
<BR>CF is completely ruled out. I am very relieved and yet very scared for my DD. No dx means no treatment plan. At this time my DD is only able to attend school a couple days a week. Although she feels she breathes cleaner air after chest PT we don't know why this has been effective. Her new pulmonologist has taken excellent care of her and I hope her next PFTs reflect the lung improvemetn she feels. She is gaining the weight back with supplements and a very high calorie diet, although her weight gain does not seem to be bringng her strength back. Her knees are painful and she is no longer the active child she once was. We are heading in many new directions for dx. I am fortunate to have a wonderful pediatrician tracking all of the specialists. Thanks to everyone who has supported me and encouraged me through the CF dx journey. Best wishes to everyone still looking for a dx for a sick family member. As for us we are still looking for the real Dr. House.
CF has been completely ruled out. I am sooo relieved and yet so scared for my DD. As my DD explains after chest PT she feels like she breathes cleaner air. We don't know why chest PT has been effective, but I am thankful for the wonderful pulmonologist that is now caring for my DD. I am hopeful that the lung improvement my DD feels will be reflected in PFT improvements as well. We are also fortunate that we have an excellent pediatrician now tracking all of the specialists that my DD is seeing. My DD is slowly gaining the weight back with supplements and a very high calorie diet, but unfortunately that has not improved her strength. Her knees continue to be very painful and she is no longer the high energy athletic child she used to be. Currently many new dx options are being tested. Thank you to everyone who supported me through this dx process. Best wishes to all those who continue to seek a dx for themselves or a sick family member. As for us we are still looking for the real Dr. House.
CF has been completely ruled out. I am sooo relieved and yet so scared for my DD. As my DD explains after chest PT she feels like she breathes cleaner air. We don't know why chest PT has been effective, but I am thankful for the wonderful pulmonologist that is now caring for my DD. I am hopeful that the lung improvement my DD feels will be reflected in PFT improvements as well. We are also fortunate that we have an excellent pediatrician now tracking all of the specialists that my DD is seeing. My DD is slowly gaining the weight back with supplements and a very high calorie diet, but unfortunately that has not improved her strength. Her knees continue to be very painful and she is no longer the high energy athletic child she used to be. Currently many new dx options are being tested. Thank you to everyone who supported me through this dx process. Best wishes to all those who continue to seek a dx for themselves or a sick family member. As for us we are still looking for the real Dr. House.
CF has been completely ruled out. I am sooo relieved and yet so scared for my DD. As my DD explains after chest PT she feels like she breathes cleaner air. We don't know why chest PT has been effective, but I am thankful for the wonderful pulmonologist that is now caring for my DD. I am hopeful that the lung improvement my DD feels will be reflected in PFT improvements as well. We are also fortunate that we have an excellent pediatrician now tracking all of the specialists that my DD is seeing. My DD is slowly gaining the weight back with supplements and a very high calorie diet, but unfortunately that has not improved her strength. Her knees continue to be very painful and she is no longer the high energy athletic child she used to be. Currently many new dx options are being tested. Thank you to everyone who supported me through this dx process. Best wishes to all those who continue to seek a dx for themselves or a sick family member. As for us we are still looking for the real Dr. House.
What about rheumatoid arthritis? Have you seen a rheumatologist? Her knees hurting has me concerned. Rheumatoid arthritis can affect your lungs. It can attack different organs. Keep me posted. Email me if you are able to I would like to know what they figure out for your daughter. I would definitely keep up with the chest pt.
mjujtu@yahoo.com
mjujtu@yahoo.com
What about rheumatoid arthritis? Have you seen a rheumatologist? Her knees hurting has me concerned. Rheumatoid arthritis can affect your lungs. It can attack different organs. Keep me posted. Email me if you are able to I would like to know what they figure out for your daughter. I would definitely keep up with the chest pt.
mjujtu@yahoo.com
mjujtu@yahoo.com
What about rheumatoid arthritis? Have you seen a rheumatologist? Her knees hurting has me concerned. Rheumatoid arthritis can affect your lungs. It can attack different organs. Keep me posted. Email me if you are able to I would like to know what they figure out for your daughter. I would definitely keep up with the chest pt.
<br />mjujtu@yahoo.com
<br />mjujtu@yahoo.com
K
Karenmichelle
Guest
Beccamom...if you get Dr. House, let me know! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are in the same boat. My son is dropping weight/3rd %, no dx, and spinning wheels. I will say that his respiratory symptoms have greatly improved with M W F Azithromycin. He does not have the constant, mucous cough. If one more test comes back "normal" I will scream!! Obviously something is not normal. I just want to have a tx plan for him. If he does not get a dx then we will be all over the place with different tx's and no answers. Waiting to hear back from GI and see if he needs an endoscopy. UGH! Anyway, I hope you get some answers. Lots of luck to you. God bless.
K
Karenmichelle
Guest
Beccamom...if you get Dr. House, let me know! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are in the same boat. My son is dropping weight/3rd %, no dx, and spinning wheels. I will say that his respiratory symptoms have greatly improved with M W F Azithromycin. He does not have the constant, mucous cough. If one more test comes back "normal" I will scream!! Obviously something is not normal. I just want to have a tx plan for him. If he does not get a dx then we will be all over the place with different tx's and no answers. Waiting to hear back from GI and see if he needs an endoscopy. UGH! Anyway, I hope you get some answers. Lots of luck to you. God bless.
K
Karenmichelle
Guest
Beccamom...if you get Dr. House, let me know! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are in the same boat. My son is dropping weight/3rd %, no dx, and spinning wheels. I will say that his respiratory symptoms have greatly improved with M W F Azithromycin. He does not have the constant, mucous cough. If one more test comes back "normal" I will scream!! Obviously something is not normal. I just want to have a tx plan for him. If he does not get a dx then we will be all over the place with different tx's and no answers. Waiting to hear back from GI and see if he needs an endoscopy. UGH! Anyway, I hope you get some answers. Lots of luck to you. God bless.<BR>
Amyr, My Mom passed away from chronic pneumonia and pulmonary fibrosis with sever GI problems. She had mutliple hosp stays for both reasons. She had mutliple ng tubes d/t sever constipation, colon polyps. Her cousin wasn't diagnosed with cf until she was 43, she passed away at 46. My Mom passed away at 64 and I really wonder now whether or not she had cf. I read your blog and thanks for trying to make others aware who are in similiar situations, like us. My daughter will be having surgery soon on her colon d/t chronic constipation since birth. She has a redundant colon, but I don't know if she was born with it or if she developed it from the constipation. Anyways, thanks for your post. My daughter has one disease causing cf mutation and one supposed non-disease causing cf mutation. Thanks again!
Amyr, My Mom passed away from chronic pneumonia and pulmonary fibrosis with sever GI problems. She had mutliple hosp stays for both reasons. She had mutliple ng tubes d/t sever constipation, colon polyps. Her cousin wasn't diagnosed with cf until she was 43, she passed away at 46. My Mom passed away at 64 and I really wonder now whether or not she had cf. I read your blog and thanks for trying to make others aware who are in similiar situations, like us. My daughter will be having surgery soon on her colon d/t chronic constipation since birth. She has a redundant colon, but I don't know if she was born with it or if she developed it from the constipation. Anyways, thanks for your post. My daughter has one disease causing cf mutation and one supposed non-disease causing cf mutation. Thanks again!
Amyr, My Mom passed away from chronic pneumonia and pulmonary fibrosis with sever GI problems. She had mutliple hosp stays for both reasons. She had mutliple ng tubes d/t sever constipation, colon polyps. Her cousin wasn't diagnosed with cf until she was 43, she passed away at 46. My Mom passed away at 64 and I really wonder now whether or not she had cf. I read your blog and thanks for trying to make others aware who are in similiar situations, like us. My daughter will be having surgery soon on her colon d/t chronic constipation since birth. She has a redundant colon, but I don't know if she was born with it or if she developed it from the constipation. Anyways, thanks for your post. My daughter has one disease causing cf mutation and one supposed non-disease causing cf mutation. Thanks again!
We do have an appointment with a Reumatologist and arthritis is on the new list of possible dx. We are continuing the chest PT because my DD asks us to. She did not ask for chest PT on Saturday and was not able to swim at all. She said she felt like the air she was breathing was not clean. By noon she asked for chest PT and then felt she could take deaper breathes, but she lacked energy all day. Sunday we were back on track with 2 times daily chest PT and by Monday she had some energy. By then only her knee pain was really stopping her. My pediatrician suggested the 3 days a week Azythromcin and I am debating on it. I will keep you all updated on our dx journey. I find the information so helpful about mucus clearnance and equipment that i will keep checking in to keep informed. Best wishes.