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RhondaB
03-16-2007, 11:13 AM
I hoping to get some answers here that I have been unable to get elsewhere. My two yo son who has been extremely healthy since birth came down with broncitis last summer in August, since that time he has had 2 bouts with pnumonia and 3 bouts with broncitis. He had immune system testing done which was normal, allergy testing which showed only a mild milk allergy. He coughs a lot when sick, but in between is fine. The problem is he doesn't stay health for more than a couple of weeks. He does go to daycare and the other kids are also getting the colds, but just don't cough with them. Our pulmonary doctor said if we can't get an asthma diagnoses and get under control they will test for CF. Now I am very scared, and am wondering if this is a normal progression for CF. We have no digestive issues, and again not even a single cold for the first 18 months.
I have an 8 year old son that was diagnosed with Becker Muscular Dystrophy last year, and my heart is just breaking at the idea of going through this again. I need some help and guidance.
Thank you.
Rhonda Bliss- NH
I should also note that we have never had any problems with sinus or phlem, he has never had a runny nose, except some clear stuff when ears are infected- he has had 3-4 ear infections in the last 6 months as well. He doesn't seem to have salty sweat, he is in the 100th percentile for weight, little bit less for height. He is a great sleeper and seems to breath easier when asleep, some nighttime coughing when sick. Our family has also been sick with many of the same viruses that he has had. I have had a cough for 6 weeks this last time. I am sorry to sound like I am pleading his case, like I said we just got through a 9 month mystery MD diagnoses and life is just starting to get back to normal.

RhondaB
03-16-2007, 11:13 AM
I hoping to get some answers here that I have been unable to get elsewhere. My two yo son who has been extremely healthy since birth came down with broncitis last summer in August, since that time he has had 2 bouts with pnumonia and 3 bouts with broncitis. He had immune system testing done which was normal, allergy testing which showed only a mild milk allergy. He coughs a lot when sick, but in between is fine. The problem is he doesn't stay health for more than a couple of weeks. He does go to daycare and the other kids are also getting the colds, but just don't cough with them. Our pulmonary doctor said if we can't get an asthma diagnoses and get under control they will test for CF. Now I am very scared, and am wondering if this is a normal progression for CF. We have no digestive issues, and again not even a single cold for the first 18 months.
I have an 8 year old son that was diagnosed with Becker Muscular Dystrophy last year, and my heart is just breaking at the idea of going through this again. I need some help and guidance.
Thank you.
Rhonda Bliss- NH
I should also note that we have never had any problems with sinus or phlem, he has never had a runny nose, except some clear stuff when ears are infected- he has had 3-4 ear infections in the last 6 months as well. He doesn't seem to have salty sweat, he is in the 100th percentile for weight, little bit less for height. He is a great sleeper and seems to breath easier when asleep, some nighttime coughing when sick. Our family has also been sick with many of the same viruses that he has had. I have had a cough for 6 weeks this last time. I am sorry to sound like I am pleading his case, like I said we just got through a 9 month mystery MD diagnoses and life is just starting to get back to normal.

RhondaB
03-16-2007, 11:13 AM
I hoping to get some answers here that I have been unable to get elsewhere. My two yo son who has been extremely healthy since birth came down with broncitis last summer in August, since that time he has had 2 bouts with pnumonia and 3 bouts with broncitis. He had immune system testing done which was normal, allergy testing which showed only a mild milk allergy. He coughs a lot when sick, but in between is fine. The problem is he doesn't stay health for more than a couple of weeks. He does go to daycare and the other kids are also getting the colds, but just don't cough with them. Our pulmonary doctor said if we can't get an asthma diagnoses and get under control they will test for CF. Now I am very scared, and am wondering if this is a normal progression for CF. We have no digestive issues, and again not even a single cold for the first 18 months.
I have an 8 year old son that was diagnosed with Becker Muscular Dystrophy last year, and my heart is just breaking at the idea of going through this again. I need some help and guidance.
Thank you.
Rhonda Bliss- NH
I should also note that we have never had any problems with sinus or phlem, he has never had a runny nose, except some clear stuff when ears are infected- he has had 3-4 ear infections in the last 6 months as well. He doesn't seem to have salty sweat, he is in the 100th percentile for weight, little bit less for height. He is a great sleeper and seems to breath easier when asleep, some nighttime coughing when sick. Our family has also been sick with many of the same viruses that he has had. I have had a cough for 6 weeks this last time. I am sorry to sound like I am pleading his case, like I said we just got through a 9 month mystery MD diagnoses and life is just starting to get back to normal.

Mommafirst
03-16-2007, 04:17 PM
Hi Rhonda,<br>
<br>
I think there are a lot of us parents around here that can relate to the devestation and difficulty that goes along with diagnosis. Your son doesn't sound to have a typical presentation of CF, but there are so many combinations of CF mutations, that it is possible that he has a less typical one. The sweat test for Cf is non-invasive and not a big deal at all. If its positive you will have an answer. If its negative or a high normal, you still might want to pursue additional CF testing, as it won't rule out CF completely. I wish you luck in getting some answers!!

Mommafirst
03-16-2007, 04:17 PM
Hi Rhonda,<br>
<br>
I think there are a lot of us parents around here that can relate to the devestation and difficulty that goes along with diagnosis. Your son doesn't sound to have a typical presentation of CF, but there are so many combinations of CF mutations, that it is possible that he has a less typical one. The sweat test for Cf is non-invasive and not a big deal at all. If its positive you will have an answer. If its negative or a high normal, you still might want to pursue additional CF testing, as it won't rule out CF completely. I wish you luck in getting some answers!!

Mommafirst
03-16-2007, 04:17 PM
Hi Rhonda,<br>
<br>
I think there are a lot of us parents around here that can relate to the devestation and difficulty that goes along with diagnosis. Your son doesn't sound to have a typical presentation of CF, but there are so many combinations of CF mutations, that it is possible that he has a less typical one. The sweat test for Cf is non-invasive and not a big deal at all. If its positive you will have an answer. If its negative or a high normal, you still might want to pursue additional CF testing, as it won't rule out CF completely. I wish you luck in getting some answers!!

Alyssa
03-16-2007, 09:13 PM
Yes, there are some "mild variant" gene mutations identified now. Some people do present with a-typical symptoms.

If you have time, read the first entry on my blog page - it gives details about my kids -- they were diagnosed in their teenage years, are pancreatic sufficient so they didn't have any digestive issues, gained weight and had a few sinus issues and some ear infection problems. My son has very few CF related issues. My daughter does have some problems with lung infections, which didn't start until she was 5 years old.

Alyssa
03-16-2007, 09:13 PM
Yes, there are some "mild variant" gene mutations identified now. Some people do present with a-typical symptoms.

If you have time, read the first entry on my blog page - it gives details about my kids -- they were diagnosed in their teenage years, are pancreatic sufficient so they didn't have any digestive issues, gained weight and had a few sinus issues and some ear infection problems. My son has very few CF related issues. My daughter does have some problems with lung infections, which didn't start until she was 5 years old.

Alyssa
03-16-2007, 09:13 PM
Yes, there are some "mild variant" gene mutations identified now. Some people do present with a-typical symptoms.

If you have time, read the first entry on my blog page - it gives details about my kids -- they were diagnosed in their teenage years, are pancreatic sufficient so they didn't have any digestive issues, gained weight and had a few sinus issues and some ear infection problems. My son has very few CF related issues. My daughter does have some problems with lung infections, which didn't start until she was 5 years old.

RhondaB
03-17-2007, 03:36 PM
Thank you to both who replied, it sounds like his symptoms are atypical, and I am still very hopeful to get the Asthma diagnoses confirmed. I was so glad to find this board, it is full of hope. That is also where I found my comfort after our Muscular Dystrophy diagnoses last year (www.parentprojectmd.org) is leading the fight against Duchene and Becker MD.
I though last night about all the same things that I thought about last year with my older son. That these children are miracles, and that just maybe our bodies would have normal tried to expel this fetus with it's genetic errors, but God helped us to go against nature so that we could be blessed by knowing and loving these children. Also giving us the opportunity to now be the people we are. I am thankful for that. So if it is CF, nothing will change- exept maybe that deeper unexplainable kind of love you get for your child knowing that they are a gift from God.
Take care to all of you and thank you for sharing with me.
Rhonda Bliss-NH

RhondaB
03-17-2007, 03:36 PM
Thank you to both who replied, it sounds like his symptoms are atypical, and I am still very hopeful to get the Asthma diagnoses confirmed. I was so glad to find this board, it is full of hope. That is also where I found my comfort after our Muscular Dystrophy diagnoses last year (www.parentprojectmd.org) is leading the fight against Duchene and Becker MD.
I though last night about all the same things that I thought about last year with my older son. That these children are miracles, and that just maybe our bodies would have normal tried to expel this fetus with it's genetic errors, but God helped us to go against nature so that we could be blessed by knowing and loving these children. Also giving us the opportunity to now be the people we are. I am thankful for that. So if it is CF, nothing will change- exept maybe that deeper unexplainable kind of love you get for your child knowing that they are a gift from God.
Take care to all of you and thank you for sharing with me.
Rhonda Bliss-NH

RhondaB
03-17-2007, 03:36 PM
Thank you to both who replied, it sounds like his symptoms are atypical, and I am still very hopeful to get the Asthma diagnoses confirmed. I was so glad to find this board, it is full of hope. That is also where I found my comfort after our Muscular Dystrophy diagnoses last year (www.parentprojectmd.org) is leading the fight against Duchene and Becker MD.
I though last night about all the same things that I thought about last year with my older son. That these children are miracles, and that just maybe our bodies would have normal tried to expel this fetus with it's genetic errors, but God helped us to go against nature so that we could be blessed by knowing and loving these children. Also giving us the opportunity to now be the people we are. I am thankful for that. So if it is CF, nothing will change- exept maybe that deeper unexplainable kind of love you get for your child knowing that they are a gift from God.
Take care to all of you and thank you for sharing with me.
Rhonda Bliss-NH

peasmom
03-28-2007, 12:32 AM
Where do I start? How about this--My daughter "Pea" was released from the hosp this am for dehydration/sinus infection and when we were discharged her Pediatrician keep refering to immun problems. She is 20 months old and has had her Tubes done twice, adnoids removed, chronic sinus infections, and now has had a cough for approx 2 months, and her chest is always sounds "Very Junky".
When she first started with the ear/sinus infections I thought "normal kid stuff". Now when she gets a cough, sneeze or sniffel it turns into antibiotics , shots, or the Hosp. She always seems to dehydrate quicker than a normal child too. Today she was released on an antibiotic, prednisone, pulmocort and albuteral for her nebulizer. I have come to the conclusion that we are beyond "just normal kid stuff"
When I was carring her I was told I carried the CF gene, her father refused to be tested...we never found out if he was a carrier. As my pregnancy went on we found out that I was in pre-term labor @ 7months. She was a Frank Breach and I had very little amniotic fluid--which @ that time they thought she may have had a genetic problem somewhere. She was born @ 32 wks 4.9lbs 16"--that's how she got the nickname Pea. Now that I sit back and think about it she has never really been the healthist of kids..I kept hearing "she's a premie--it's harder for her to fight stuff off"
My first questions was can someone be diagnosed anytime or is it only when the baby is born. That was what lead me to you. As I read your story I realized that it is mine. Pea has an appt on 4/6 with an Allergy/Immun specialist. Ther was labs done last night @ the Hosp and they did do allergy labs this am but we don't know what they show yet
Now that my first ? has been answered What should I look for, what test should be done, which way do I go. Stick with the allergy/immun specialist, or req bw/test to be done know?

Any info would be helpful, thank you in advance for any answers you may have.

peasmom
03-28-2007, 12:32 AM
Where do I start? How about this--My daughter "Pea" was released from the hosp this am for dehydration/sinus infection and when we were discharged her Pediatrician keep refering to immun problems. She is 20 months old and has had her Tubes done twice, adnoids removed, chronic sinus infections, and now has had a cough for approx 2 months, and her chest is always sounds "Very Junky".
When she first started with the ear/sinus infections I thought "normal kid stuff". Now when she gets a cough, sneeze or sniffel it turns into antibiotics , shots, or the Hosp. She always seems to dehydrate quicker than a normal child too. Today she was released on an antibiotic, prednisone, pulmocort and albuteral for her nebulizer. I have come to the conclusion that we are beyond "just normal kid stuff"
When I was carring her I was told I carried the CF gene, her father refused to be tested...we never found out if he was a carrier. As my pregnancy went on we found out that I was in pre-term labor @ 7months. She was a Frank Breach and I had very little amniotic fluid--which @ that time they thought she may have had a genetic problem somewhere. She was born @ 32 wks 4.9lbs 16"--that's how she got the nickname Pea. Now that I sit back and think about it she has never really been the healthist of kids..I kept hearing "she's a premie--it's harder for her to fight stuff off"
My first questions was can someone be diagnosed anytime or is it only when the baby is born. That was what lead me to you. As I read your story I realized that it is mine. Pea has an appt on 4/6 with an Allergy/Immun specialist. Ther was labs done last night @ the Hosp and they did do allergy labs this am but we don't know what they show yet
Now that my first ? has been answered What should I look for, what test should be done, which way do I go. Stick with the allergy/immun specialist, or req bw/test to be done know?

Any info would be helpful, thank you in advance for any answers you may have.

peasmom
03-28-2007, 12:32 AM
Where do I start? How about this--My daughter "Pea" was released from the hosp this am for dehydration/sinus infection and when we were discharged her Pediatrician keep refering to immun problems. She is 20 months old and has had her Tubes done twice, adnoids removed, chronic sinus infections, and now has had a cough for approx 2 months, and her chest is always sounds "Very Junky".
When she first started with the ear/sinus infections I thought "normal kid stuff". Now when she gets a cough, sneeze or sniffel it turns into antibiotics , shots, or the Hosp. She always seems to dehydrate quicker than a normal child too. Today she was released on an antibiotic, prednisone, pulmocort and albuteral for her nebulizer. I have come to the conclusion that we are beyond "just normal kid stuff"
When I was carring her I was told I carried the CF gene, her father refused to be tested...we never found out if he was a carrier. As my pregnancy went on we found out that I was in pre-term labor @ 7months. She was a Frank Breach and I had very little amniotic fluid--which @ that time they thought she may have had a genetic problem somewhere. She was born @ 32 wks 4.9lbs 16"--that's how she got the nickname Pea. Now that I sit back and think about it she has never really been the healthist of kids..I kept hearing "she's a premie--it's harder for her to fight stuff off"
My first questions was can someone be diagnosed anytime or is it only when the baby is born. That was what lead me to you. As I read your story I realized that it is mine. Pea has an appt on 4/6 with an Allergy/Immun specialist. Ther was labs done last night @ the Hosp and they did do allergy labs this am but we don't know what they show yet
Now that my first ? has been answered What should I look for, what test should be done, which way do I go. Stick with the allergy/immun specialist, or req bw/test to be done know?

Any info would be helpful, thank you in advance for any answers you may have.

peasmom
03-28-2007, 01:00 AM
<img src="i/expressions/face-icon-small-confused.gif" border="0">

peasmom
03-28-2007, 01:00 AM
<img src="i/expressions/face-icon-small-confused.gif" border="0">

peasmom
03-28-2007, 01:00 AM
<img src="i/expressions/face-icon-small-confused.gif" border="0">

AnD
03-28-2007, 01:51 AM
The symptoms you describe sound very much like my best friend's daughter who has asthma, so I am hoping (and will pray) that that is it. Whenever she gets a cold, she has a major asthma flare up, with the gunky cough, waking up in the middle of the night with a terrible cough that requires a nebulizer treatment, and the cough lasting forever. My friend homeschools her kids though, so they don't get exposed to the number of germs that your average kid is at school or daycare, especially when she is having a bout of this (I have to admit, it is easier to have a friend with kids who understands that a playdate will be cancelled by either party due to a runny nose, with the other person thankful you cancelled at the last minute! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), so after a few weeks, her cough will finally go away. It took a while for them to finally figure out which "kind" of asthma she has (cold inflamation, vs. allergy triggers, vs. enviromental, etc.)
My cousin has a child who caught a cold or some crud every week from the church nursery, and their doctor finally told them to keep him home for a while and give his immune system a rest- getting sick again before getting totally well from the last round of crud was taking a toll on his little body, so they took turns going to church for a while.

I don't know if this helps you or not, but maybe if he is in daycare, it is a combination of the two, especially if it is asthma. I hope you find the answers soon.

AnD
03-28-2007, 01:51 AM
The symptoms you describe sound very much like my best friend's daughter who has asthma, so I am hoping (and will pray) that that is it. Whenever she gets a cold, she has a major asthma flare up, with the gunky cough, waking up in the middle of the night with a terrible cough that requires a nebulizer treatment, and the cough lasting forever. My friend homeschools her kids though, so they don't get exposed to the number of germs that your average kid is at school or daycare, especially when she is having a bout of this (I have to admit, it is easier to have a friend with kids who understands that a playdate will be cancelled by either party due to a runny nose, with the other person thankful you cancelled at the last minute! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), so after a few weeks, her cough will finally go away. It took a while for them to finally figure out which "kind" of asthma she has (cold inflamation, vs. allergy triggers, vs. enviromental, etc.)
My cousin has a child who caught a cold or some crud every week from the church nursery, and their doctor finally told them to keep him home for a while and give his immune system a rest- getting sick again before getting totally well from the last round of crud was taking a toll on his little body, so they took turns going to church for a while.

I don't know if this helps you or not, but maybe if he is in daycare, it is a combination of the two, especially if it is asthma. I hope you find the answers soon.

AnD
03-28-2007, 01:51 AM
The symptoms you describe sound very much like my best friend's daughter who has asthma, so I am hoping (and will pray) that that is it. Whenever she gets a cold, she has a major asthma flare up, with the gunky cough, waking up in the middle of the night with a terrible cough that requires a nebulizer treatment, and the cough lasting forever. My friend homeschools her kids though, so they don't get exposed to the number of germs that your average kid is at school or daycare, especially when she is having a bout of this (I have to admit, it is easier to have a friend with kids who understands that a playdate will be cancelled by either party due to a runny nose, with the other person thankful you cancelled at the last minute! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), so after a few weeks, her cough will finally go away. It took a while for them to finally figure out which "kind" of asthma she has (cold inflamation, vs. allergy triggers, vs. enviromental, etc.)
My cousin has a child who caught a cold or some crud every week from the church nursery, and their doctor finally told them to keep him home for a while and give his immune system a rest- getting sick again before getting totally well from the last round of crud was taking a toll on his little body, so they took turns going to church for a while.

I don't know if this helps you or not, but maybe if he is in daycare, it is a combination of the two, especially if it is asthma. I hope you find the answers soon.

JazzysMom
03-28-2007, 10:35 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>peasmom</b></i>

<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

Given the fact that you are a definite carrier and you dont know about your husband, I would IMMEDIATELY request a genetic testing. Push for the full panel by Ambry since it covers the most mutations. Knowing that you are a carrier is a start, but it doesnt tell if your child is a symptomatic carrier or is a CFer. All the other testing wont give answers if its CF. It will actually confuse things IMHO since many CF issues can mimick (sp?) things or include allergies, asmtha etc. Good Luck and update us, ok?!

JazzysMom
03-28-2007, 10:35 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>peasmom</b></i>

<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

Given the fact that you are a definite carrier and you dont know about your husband, I would IMMEDIATELY request a genetic testing. Push for the full panel by Ambry since it covers the most mutations. Knowing that you are a carrier is a start, but it doesnt tell if your child is a symptomatic carrier or is a CFer. All the other testing wont give answers if its CF. It will actually confuse things IMHO since many CF issues can mimick (sp?) things or include allergies, asmtha etc. Good Luck and update us, ok?!

JazzysMom
03-28-2007, 10:35 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>peasmom</b></i>

<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

Given the fact that you are a definite carrier and you dont know about your husband, I would IMMEDIATELY request a genetic testing. Push for the full panel by Ambry since it covers the most mutations. Knowing that you are a carrier is a start, but it doesnt tell if your child is a symptomatic carrier or is a CFer. All the other testing wont give answers if its CF. It will actually confuse things IMHO since many CF issues can mimick (sp?) things or include allergies, asmtha etc. Good Luck and update us, ok?!

Rebjane
03-28-2007, 10:45 AM
Hi there,

I agree with Jazzysmom, I would push for full genetic testing for your daughter for the CF gene. Has your daughter ever had a sputum culture to see if she's culturing any specific bacteria when she is sick? People with CF pick up certain bacteria in their sputum and mucus that is pretty CF specific, like pseudomonas or staph areus among many other things. if she had a culture like that it may prompt the doc to do the genetic testing as well. Hopefully it is not CF but I would be pushy and ask for her blood to be drawn for the bloodwork. To find a CF center near you go to www.cff.org. This is the Cystic Fibrosis Foundation's website. The CF docs and nurses are most helpful in answering questions.

Rebjane
03-28-2007, 10:45 AM
Hi there,

I agree with Jazzysmom, I would push for full genetic testing for your daughter for the CF gene. Has your daughter ever had a sputum culture to see if she's culturing any specific bacteria when she is sick? People with CF pick up certain bacteria in their sputum and mucus that is pretty CF specific, like pseudomonas or staph areus among many other things. if she had a culture like that it may prompt the doc to do the genetic testing as well. Hopefully it is not CF but I would be pushy and ask for her blood to be drawn for the bloodwork. To find a CF center near you go to www.cff.org. This is the Cystic Fibrosis Foundation's website. The CF docs and nurses are most helpful in answering questions.

Rebjane
03-28-2007, 10:45 AM
Hi there,

I agree with Jazzysmom, I would push for full genetic testing for your daughter for the CF gene. Has your daughter ever had a sputum culture to see if she's culturing any specific bacteria when she is sick? People with CF pick up certain bacteria in their sputum and mucus that is pretty CF specific, like pseudomonas or staph areus among many other things. if she had a culture like that it may prompt the doc to do the genetic testing as well. Hopefully it is not CF but I would be pushy and ask for her blood to be drawn for the bloodwork. To find a CF center near you go to www.cff.org. This is the Cystic Fibrosis Foundation's website. The CF docs and nurses are most helpful in answering questions.

Rebjane
03-28-2007, 10:46 AM
My post was for peasmom.

Rebjane
03-28-2007, 10:46 AM
My post was for peasmom.

Rebjane
03-28-2007, 10:46 AM
My post was for peasmom.

peasmom
03-28-2007, 11:33 PM
Thank you to all that gave me some answers--It's been a long day. Yes she has had cultures done of her nose and it showed staph, strep and some colonizing. I went to the Hosp today and picked up her lab results from the allergy testing and she is neg on all allergans that were done. I was kind of hoping she had the allergies--it would be easier. As for the asthma I don't see a pattern there and not one DR has mentioned it. This may scare you all a little but I am a LPN and am aware of the asthma symptoms and she just doesn't seem to fit in there. When it comes to my kids I try really hard to be Mom not the Nurse but I 'm starting to think I need to be both. After a very long day and a lot of thinking the only thing I can do at this time is be her mom and love her. No matter what, I will do what ever it takes to give her a normal as possible life. At this point untill we get some answers I can only put it in Gods hands and pray. As my quote says My Kids ==My Life- they are all I have . No I should say I have you guys for the support now. Even if it ends up she doesn't have CF it's nice to know that there are people out there in the world that actually care about others.
Thanks again for all your input and I will keep you posted on what happens.


Thank you all again Peasmom

peasmom
03-28-2007, 11:33 PM
Thank you to all that gave me some answers--It's been a long day. Yes she has had cultures done of her nose and it showed staph, strep and some colonizing. I went to the Hosp today and picked up her lab results from the allergy testing and she is neg on all allergans that were done. I was kind of hoping she had the allergies--it would be easier. As for the asthma I don't see a pattern there and not one DR has mentioned it. This may scare you all a little but I am a LPN and am aware of the asthma symptoms and she just doesn't seem to fit in there. When it comes to my kids I try really hard to be Mom not the Nurse but I 'm starting to think I need to be both. After a very long day and a lot of thinking the only thing I can do at this time is be her mom and love her. No matter what, I will do what ever it takes to give her a normal as possible life. At this point untill we get some answers I can only put it in Gods hands and pray. As my quote says My Kids ==My Life- they are all I have . No I should say I have you guys for the support now. Even if it ends up she doesn't have CF it's nice to know that there are people out there in the world that actually care about others.
Thanks again for all your input and I will keep you posted on what happens.


Thank you all again Peasmom

peasmom
03-28-2007, 11:33 PM
Thank you to all that gave me some answers--It's been a long day. Yes she has had cultures done of her nose and it showed staph, strep and some colonizing. I went to the Hosp today and picked up her lab results from the allergy testing and she is neg on all allergans that were done. I was kind of hoping she had the allergies--it would be easier. As for the asthma I don't see a pattern there and not one DR has mentioned it. This may scare you all a little but I am a LPN and am aware of the asthma symptoms and she just doesn't seem to fit in there. When it comes to my kids I try really hard to be Mom not the Nurse but I 'm starting to think I need to be both. After a very long day and a lot of thinking the only thing I can do at this time is be her mom and love her. No matter what, I will do what ever it takes to give her a normal as possible life. At this point untill we get some answers I can only put it in Gods hands and pray. As my quote says My Kids ==My Life- they are all I have . No I should say I have you guys for the support now. Even if it ends up she doesn't have CF it's nice to know that there are people out there in the world that actually care about others.
Thanks again for all your input and I will keep you posted on what happens.


Thank you all again Peasmom

peasmom
03-28-2007, 11:41 PM
To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it

peasmom
03-28-2007, 11:41 PM
To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it

peasmom
03-28-2007, 11:41 PM
To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it

Alyssa
03-29-2007, 02:18 AM
<b>peasmom,</b>

I posted the first part of this message to you on the other post :


<i>The sweat test *can* be very accurate -- when you fall pretty high and there isn't much of a question as to the results -- many people test out in say the 100+ number -- usually the docs will take that (along with CF symptoms) as a pretty clear diagnosis and will follow up with genetic testing to see what genes the person has, but they can pretty safely say "yes, you have CF"

The problem with sweat tests not being accurate is when they fall low -- say in the 30-60 range.... then docs can sometimes tell people they have "negative" or "normal" test results, when in fact the person does have two genes and should be tested to find them (many of the mild genes cause a lower sweat test number - but a lot of "regular" docs don't really know that)

If you have time, read the first entry on my blog page for more detailed info. (link in my signature line)</i>

***************** new stuff below***********

<u>Now that I read more about your daughter's situation on this post</u>, <b>I would strongly encourage you to be the biggest pain in the butt patient you can for your daughter -- since you know you are a carrier and she has had some VERY CLASSIC CF symptoms, I'd say it is imperative that you get her tested </b>-- you may get a clear cut answer right away with a sweat test, but if you don't (and even if you do) you still will need genetic testing to find out what her gene mutations are.

If you run into resistance from your doctor, let them start with just the sweat test, but after that do not back down until you get full genetic testing -- Any doctor who is familiar with CF wouldn't take 30 seconds to decide to test her. If you are not successful with the doctor you are seeing now -- go find another doctor who is familiar with CF -- find the CFF center closest to you at CFF.org

Best of luck and keep us posted !

Alyssa
03-29-2007, 02:18 AM
<b>peasmom,</b>

I posted the first part of this message to you on the other post :


<i>The sweat test *can* be very accurate -- when you fall pretty high and there isn't much of a question as to the results -- many people test out in say the 100+ number -- usually the docs will take that (along with CF symptoms) as a pretty clear diagnosis and will follow up with genetic testing to see what genes the person has, but they can pretty safely say "yes, you have CF"

The problem with sweat tests not being accurate is when they fall low -- say in the 30-60 range.... then docs can sometimes tell people they have "negative" or "normal" test results, when in fact the person does have two genes and should be tested to find them (many of the mild genes cause a lower sweat test number - but a lot of "regular" docs don't really know that)

If you have time, read the first entry on my blog page for more detailed info. (link in my signature line)</i>

***************** new stuff below***********

<u>Now that I read more about your daughter's situation on this post</u>, <b>I would strongly encourage you to be the biggest pain in the butt patient you can for your daughter -- since you know you are a carrier and she has had some VERY CLASSIC CF symptoms, I'd say it is imperative that you get her tested </b>-- you may get a clear cut answer right away with a sweat test, but if you don't (and even if you do) you still will need genetic testing to find out what her gene mutations are.

If you run into resistance from your doctor, let them start with just the sweat test, but after that do not back down until you get full genetic testing -- Any doctor who is familiar with CF wouldn't take 30 seconds to decide to test her. If you are not successful with the doctor you are seeing now -- go find another doctor who is familiar with CF -- find the CFF center closest to you at CFF.org

Best of luck and keep us posted !

Alyssa
03-29-2007, 02:18 AM
<b>peasmom,</b>

I posted the first part of this message to you on the other post :


<i>The sweat test *can* be very accurate -- when you fall pretty high and there isn't much of a question as to the results -- many people test out in say the 100+ number -- usually the docs will take that (along with CF symptoms) as a pretty clear diagnosis and will follow up with genetic testing to see what genes the person has, but they can pretty safely say "yes, you have CF"

The problem with sweat tests not being accurate is when they fall low -- say in the 30-60 range.... then docs can sometimes tell people they have "negative" or "normal" test results, when in fact the person does have two genes and should be tested to find them (many of the mild genes cause a lower sweat test number - but a lot of "regular" docs don't really know that)

If you have time, read the first entry on my blog page for more detailed info. (link in my signature line)</i>

***************** new stuff below***********

<u>Now that I read more about your daughter's situation on this post</u>, <b>I would strongly encourage you to be the biggest pain in the butt patient you can for your daughter -- since you know you are a carrier and she has had some VERY CLASSIC CF symptoms, I'd say it is imperative that you get her tested </b>-- you may get a clear cut answer right away with a sweat test, but if you don't (and even if you do) you still will need genetic testing to find out what her gene mutations are.

If you run into resistance from your doctor, let them start with just the sweat test, but after that do not back down until you get full genetic testing -- Any doctor who is familiar with CF wouldn't take 30 seconds to decide to test her. If you are not successful with the doctor you are seeing now -- go find another doctor who is familiar with CF -- find the CFF center closest to you at CFF.org

Best of luck and keep us posted !

JazzysMom
03-29-2007, 08:59 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>peasmom</b></i>

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it</end quote></div>

It is a blood test that any doctor can order. Since an extended panel from Ambry takes a while......if this is what is ordered the sooner the better. It is very important that it not just be sent to any lab since Ambry has the most extended testing for CF mutations. It will assure more accuracy. The sweat test is helpful, but is no longer the golden rule. It use to be the only available diagnostic testing available. Since the CF gene was found and genetic testing has started....it has become more apparent how unreliable the sweat test can be. Its not bad to have it, but to use it as the only testing isnt recommended especially when results come back negative or borderline.

JazzysMom
03-29-2007, 08:59 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>peasmom</b></i>

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it</end quote></div>

It is a blood test that any doctor can order. Since an extended panel from Ambry takes a while......if this is what is ordered the sooner the better. It is very important that it not just be sent to any lab since Ambry has the most extended testing for CF mutations. It will assure more accuracy. The sweat test is helpful, but is no longer the golden rule. It use to be the only available diagnostic testing available. Since the CF gene was found and genetic testing has started....it has become more apparent how unreliable the sweat test can be. Its not bad to have it, but to use it as the only testing isnt recommended especially when results come back negative or borderline.

JazzysMom
03-29-2007, 08:59 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>peasmom</b></i>

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it</end quote></div>

It is a blood test that any doctor can order. Since an extended panel from Ambry takes a while......if this is what is ordered the sooner the better. It is very important that it not just be sent to any lab since Ambry has the most extended testing for CF mutations. It will assure more accuracy. The sweat test is helpful, but is no longer the golden rule. It use to be the only available diagnostic testing available. Since the CF gene was found and genetic testing has started....it has become more apparent how unreliable the sweat test can be. Its not bad to have it, but to use it as the only testing isnt recommended especially when results come back negative or borderline.

peasmom
04-03-2007, 11:51 PM
Once again--THANK YOU for all the suport!!! We went to her follow up appt and I mentioned CF and was told she was tested with her newborn screening, and she was neg. I voiced my concernes and was still blown off. Needless to say I was not very happy and was told " We are going to refer you to a specialist(allergy/immun). As they started to examine her, her hands, mouth, and feet turned blue/purple, they did an Oxygen level (O2 sat) and she was only 82%. She then started to cry and went up to 94%, which still is not good for an infant or anyone. I was told to continue the breathing treatments and follow up with the Allergy Dr. . Her appt is this friday and I WILL get answers before I leave.....Enough is enough. I am still going to ask for more test regarding the CF, and everything else they can test for. I pray every night that it is not but there is something wrong and I don't believe it is allergies or asthma. She has had many colds before and never ended up this sick for SO LONG. As for the breathing Tx they do NOTHING for her. She is just as "junky" as she was prior to the tx and she actually does it good enough to get the meds in her. I will keep everyone posted. I hope you are all well! Thank You again--It helps to know someone is out there to listen when it feels no one else is!<img src="i/expressions/face-icon-small-smile.gif" border="0">

peasmom
04-03-2007, 11:51 PM
Once again--THANK YOU for all the suport!!! We went to her follow up appt and I mentioned CF and was told she was tested with her newborn screening, and she was neg. I voiced my concernes and was still blown off. Needless to say I was not very happy and was told " We are going to refer you to a specialist(allergy/immun). As they started to examine her, her hands, mouth, and feet turned blue/purple, they did an Oxygen level (O2 sat) and she was only 82%. She then started to cry and went up to 94%, which still is not good for an infant or anyone. I was told to continue the breathing treatments and follow up with the Allergy Dr. . Her appt is this friday and I WILL get answers before I leave.....Enough is enough. I am still going to ask for more test regarding the CF, and everything else they can test for. I pray every night that it is not but there is something wrong and I don't believe it is allergies or asthma. She has had many colds before and never ended up this sick for SO LONG. As for the breathing Tx they do NOTHING for her. She is just as "junky" as she was prior to the tx and she actually does it good enough to get the meds in her. I will keep everyone posted. I hope you are all well! Thank You again--It helps to know someone is out there to listen when it feels no one else is!<img src="i/expressions/face-icon-small-smile.gif" border="0">

peasmom
04-03-2007, 11:51 PM
Once again--THANK YOU for all the suport!!! We went to her follow up appt and I mentioned CF and was told she was tested with her newborn screening, and she was neg. I voiced my concernes and was still blown off. Needless to say I was not very happy and was told " We are going to refer you to a specialist(allergy/immun). As they started to examine her, her hands, mouth, and feet turned blue/purple, they did an Oxygen level (O2 sat) and she was only 82%. She then started to cry and went up to 94%, which still is not good for an infant or anyone. I was told to continue the breathing treatments and follow up with the Allergy Dr. . Her appt is this friday and I WILL get answers before I leave.....Enough is enough. I am still going to ask for more test regarding the CF, and everything else they can test for. I pray every night that it is not but there is something wrong and I don't believe it is allergies or asthma. She has had many colds before and never ended up this sick for SO LONG. As for the breathing Tx they do NOTHING for her. She is just as "junky" as she was prior to the tx and she actually does it good enough to get the meds in her. I will keep everyone posted. I hope you are all well! Thank You again--It helps to know someone is out there to listen when it feels no one else is!<img src="i/expressions/face-icon-small-smile.gif" border="0">

peasmom
04-15-2007, 11:50 AM
Just wanted to let you know where we are at. Pea was admitted into the Hosp on Easter Sunday for Pneumonia and a full blown sinus infection. She was there for 4 days and released on Bactrim twice a day for 20 days, Pulmicort and Albuteral Neb tx's.. So far she is doing well--she not as "junky" as she was. When we were in the Hosp they did an EKG and Echocardiogram to rule out a Cardiac problem. It was pretty in accurate due to her screaming and moving all around while they did them. We have an appt on 4/26 with a Specialist at Albany Medical Center Pediatric Pulmonology and CF center. I was also given a Rx for the Sweat test but it has to be done down there and they want to see her prior to doing it. Sooooo-I HAVE Become the BIGGEST Pain the Doctors have ever seen this time around. We are getting a Pulse Oxsimiter for at home---her O2 levels in the Hosp ranged form 82% to 94%--never going any high than 94%. I went an got all her reports from blood work to x-ray results going back to October to bring to the specialist. <span class="FTHighlightFont"></span ft>SOMEONE WILL listen to me this time. I will keep everyone posted on what they have to say in Albany...Thank You again for all your support

peasmom
04-15-2007, 11:50 AM
Just wanted to let you know where we are at. Pea was admitted into the Hosp on Easter Sunday for Pneumonia and a full blown sinus infection. She was there for 4 days and released on Bactrim twice a day for 20 days, Pulmicort and Albuteral Neb tx's.. So far she is doing well--she not as "junky" as she was. When we were in the Hosp they did an EKG and Echocardiogram to rule out a Cardiac problem. It was pretty in accurate due to her screaming and moving all around while they did them. We have an appt on 4/26 with a Specialist at Albany Medical Center Pediatric Pulmonology and CF center. I was also given a Rx for the Sweat test but it has to be done down there and they want to see her prior to doing it. Sooooo-I HAVE Become the BIGGEST Pain the Doctors have ever seen this time around. We are getting a Pulse Oxsimiter for at home---her O2 levels in the Hosp ranged form 82% to 94%--never going any high than 94%. I went an got all her reports from blood work to x-ray results going back to October to bring to the specialist. <span class="FTHighlightFont"></span ft>SOMEONE WILL listen to me this time. I will keep everyone posted on what they have to say in Albany...Thank You again for all your support

peasmom
04-15-2007, 11:50 AM
Just wanted to let you know where we are at. Pea was admitted into the Hosp on Easter Sunday for Pneumonia and a full blown sinus infection. She was there for 4 days and released on Bactrim twice a day for 20 days, Pulmicort and Albuteral Neb tx's.. So far she is doing well--she not as "junky" as she was. When we were in the Hosp they did an EKG and Echocardiogram to rule out a Cardiac problem. It was pretty in accurate due to her screaming and moving all around while they did them. We have an appt on 4/26 with a Specialist at Albany Medical Center Pediatric Pulmonology and CF center. I was also given a Rx for the Sweat test but it has to be done down there and they want to see her prior to doing it. Sooooo-I HAVE Become the BIGGEST Pain the Doctors have ever seen this time around. We are getting a Pulse Oxsimiter for at home---her O2 levels in the Hosp ranged form 82% to 94%--never going any high than 94%. I went an got all her reports from blood work to x-ray results going back to October to bring to the specialist. <span class="FTHighlightFont"></span ft>SOMEONE WILL listen to me this time. I will keep everyone posted on what they have to say in Albany...Thank You again for all your support

izemmom
04-15-2007, 12:24 PM
peasmom -

just wanted to say "You go, mom!" I'm glad you are being the pain in the dr.s butt and working to get answers. I will be thinking of you!

izemmom
04-15-2007, 12:24 PM
peasmom -

just wanted to say "You go, mom!" I'm glad you are being the pain in the dr.s butt and working to get answers. I will be thinking of you!

izemmom
04-15-2007, 12:24 PM
peasmom -

just wanted to say "You go, mom!" I'm glad you are being the pain in the dr.s butt and working to get answers. I will be thinking of you!

Alyssa
04-15-2007, 05:11 PM
Way to go -- I believe being the biggest pain in the butt was my recommendation

:-) heheheheh

Keep up the good work - and be sure to post again after the 26th. Best wishes!

Alyssa
04-15-2007, 05:11 PM
Way to go -- I believe being the biggest pain in the butt was my recommendation

:-) heheheheh

Keep up the good work - and be sure to post again after the 26th. Best wishes!

Alyssa
04-15-2007, 05:11 PM
Way to go -- I believe being the biggest pain in the butt was my recommendation

:-) heheheheh

Keep up the good work - and be sure to post again after the 26th. Best wishes!

peasmom
04-29-2007, 03:36 AM
Just wanted everyone to know we are doing good at this time. I have not had a chance to update you and I apologize. As you can see it is 1:30 in the morning and I am still up. My mind just does not shut off!!!!!!!! I was going to fill you in on everything but I think I will come back tomorrow. No definite diagnosis yet, I'll talk to you all when I have some quite time, BOTH eyes open, and a clearer head tomorrow ;). My days have been CRAZY!!!!!

Talk to you soon! :)

peasmom
04-29-2007, 03:36 AM
Just wanted everyone to know we are doing good at this time. I have not had a chance to update you and I apologize. As you can see it is 1:30 in the morning and I am still up. My mind just does not shut off!!!!!!!! I was going to fill you in on everything but I think I will come back tomorrow. No definite diagnosis yet, I'll talk to you all when I have some quite time, BOTH eyes open, and a clearer head tomorrow ;). My days have been CRAZY!!!!!

Talk to you soon! :)

peasmom
04-29-2007, 03:36 AM
Just wanted everyone to know we are doing good at this time. I have not had a chance to update you and I apologize. As you can see it is 1:30 in the morning and I am still up. My mind just does not shut off!!!!!!!! I was going to fill you in on everything but I think I will come back tomorrow. No definite diagnosis yet, I'll talk to you all when I have some quite time, BOTH eyes open, and a clearer head tomorrow ;). My days have been CRAZY!!!!!

Talk to you soon! :)

amber682
04-29-2007, 05:08 AM
I can't wait for the update on how things went, and good for you for standing your ground and demanding someone listens. Trust the mommy instinct!

amber682
04-29-2007, 05:08 AM
I can't wait for the update on how things went, and good for you for standing your ground and demanding someone listens. Trust the mommy instinct!

amber682
04-29-2007, 05:08 AM
I can't wait for the update on how things went, and good for you for standing your ground and demanding someone listens. Trust the mommy instinct!

peasmom
05-09-2007, 12:11 AM
<img src="i/expressions/face-icon-small-happy.gif" border="0"> I finally have a few minutes to update everyone. The specialist we saw in Albany was GREAT!!!!!!!!!! He looked at all her chest x-ray's -9 in all and said she has had pneumonia 8 times, in approx a 6 month time span. This was a surprise to me. Our local hospitals X-ray Department final reports on 8 of the x-rays were either bronchitist, asthma or normal..only 1 report said she had pneumonia. Unfortunatly her Doctor only reads the reports and does not actually LOOK at the films. I was not too happy on that one, but that's a whole other story!!! Anyways, He said due to me being a carrier of the CF gene and her history he definitly feels she should have the sweet test done. He did say he does not think she has CF but the possibility is there and it is something that needs to be ruled out. He did say she does not have "asthma" but does have Reactive Airway Disease which is in the same family as asthma. I did alitlle research and did not really come up with anymore than I already know. A simple cold will put her in the Hosp if it is not treated agressively. He started her on Singulair once a day and is having her continue with the Pulmicort Neb treatments twice a day and wants to see what will happen when the "cold" season is over. We have an appt at the end of June for the sweat test and a followup appt. He also wants to be notified if she ends up having to be admitted again, so he can bring us down to his Hosp if needed.
As for Pea, she has been approx 3 weeks without an antibiotic and she is JUST starting to junk up again. He thinks (and I am hoping )that with the new medicine she will be able to fight it off like a normal kid. We will see what happens. So far it looks alittle promising, this is the longest she has been with out having to be put on something for either her ears, sinus, or ? pneumonia.
I want to first apologize for taking so long to get back to everyone and second thank you for all the advise and support. I hope you and your kids are all well and stay well. I will keep everyone posted on our next visit. <img src="i/expressions/heart.gif" border="0">

peasmom
05-09-2007, 12:11 AM
<img src="i/expressions/face-icon-small-happy.gif" border="0"> I finally have a few minutes to update everyone. The specialist we saw in Albany was GREAT!!!!!!!!!! He looked at all her chest x-ray's -9 in all and said she has had pneumonia 8 times, in approx a 6 month time span. This was a surprise to me. Our local hospitals X-ray Department final reports on 8 of the x-rays were either bronchitist, asthma or normal..only 1 report said she had pneumonia. Unfortunatly her Doctor only reads the reports and does not actually LOOK at the films. I was not too happy on that one, but that's a whole other story!!! Anyways, He said due to me being a carrier of the CF gene and her history he definitly feels she should have the sweet test done. He did say he does not think she has CF but the possibility is there and it is something that needs to be ruled out. He did say she does not have "asthma" but does have Reactive Airway Disease which is in the same family as asthma. I did alitlle research and did not really come up with anymore than I already know. A simple cold will put her in the Hosp if it is not treated agressively. He started her on Singulair once a day and is having her continue with the Pulmicort Neb treatments twice a day and wants to see what will happen when the "cold" season is over. We have an appt at the end of June for the sweat test and a followup appt. He also wants to be notified if she ends up having to be admitted again, so he can bring us down to his Hosp if needed.
As for Pea, she has been approx 3 weeks without an antibiotic and she is JUST starting to junk up again. He thinks (and I am hoping )that with the new medicine she will be able to fight it off like a normal kid. We will see what happens. So far it looks alittle promising, this is the longest she has been with out having to be put on something for either her ears, sinus, or ? pneumonia.
I want to first apologize for taking so long to get back to everyone and second thank you for all the advise and support. I hope you and your kids are all well and stay well. I will keep everyone posted on our next visit. <img src="i/expressions/heart.gif" border="0">

peasmom
05-09-2007, 12:11 AM
<img src="i/expressions/face-icon-small-happy.gif" border="0"> I finally have a few minutes to update everyone. The specialist we saw in Albany was GREAT!!!!!!!!!! He looked at all her chest x-ray's -9 in all and said she has had pneumonia 8 times, in approx a 6 month time span. This was a surprise to me. Our local hospitals X-ray Department final reports on 8 of the x-rays were either bronchitist, asthma or normal..only 1 report said she had pneumonia. Unfortunatly her Doctor only reads the reports and does not actually LOOK at the films. I was not too happy on that one, but that's a whole other story!!! Anyways, He said due to me being a carrier of the CF gene and her history he definitly feels she should have the sweet test done. He did say he does not think she has CF but the possibility is there and it is something that needs to be ruled out. He did say she does not have "asthma" but does have Reactive Airway Disease which is in the same family as asthma. I did alitlle research and did not really come up with anymore than I already know. A simple cold will put her in the Hosp if it is not treated agressively. He started her on Singulair once a day and is having her continue with the Pulmicort Neb treatments twice a day and wants to see what will happen when the "cold" season is over. We have an appt at the end of June for the sweat test and a followup appt. He also wants to be notified if she ends up having to be admitted again, so he can bring us down to his Hosp if needed.
As for Pea, she has been approx 3 weeks without an antibiotic and she is JUST starting to junk up again. He thinks (and I am hoping )that with the new medicine she will be able to fight it off like a normal kid. We will see what happens. So far it looks alittle promising, this is the longest she has been with out having to be put on something for either her ears, sinus, or ? pneumonia.
I want to first apologize for taking so long to get back to everyone and second thank you for all the advise and support. I hope you and your kids are all well and stay well. I will keep everyone posted on our next visit. <img src="i/expressions/heart.gif" border="0">