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RhondaB

New member
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.
 
R

RhondaB

New member
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.
 
R

RhondaB

New member
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.
 
M

Mommafirst

Guest
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!!
 
M

Mommafirst

Guest
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!!
 
M

Mommafirst

Guest
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!!
 
A

Alyssa

New member
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.
 
A

Alyssa

New member
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.
 
A

Alyssa

New member
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.
 
R

RhondaB

New member
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
 
R

RhondaB

New member
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
 
R

RhondaB

New member
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
 
P

peasmom

New member
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.
 
P

peasmom

New member
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.
 
P

peasmom

New member
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.
 
A

AnD

New member
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.
 
A

AnD

New member
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.
 
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