Waiting for Diagnosis

B

bdd9623

Guest
Hi, I am new to the forums here but am looking for people with information.

My son is 8 yrs old. Just dropped from the 25% in weight to 3%. Has polyps in his nose, 4 serious lung infections in past year. Constantly coughing that only gets better upon nebulizing, fought low grade fevers for past 3 months, belly aches all the time, tired all the time, enlarged lungs seen on x-ray a week ago. Went to infectious disease at Children's Hospital in Phila. Had sweat test. Came back borderline high at 56. Results not sent to infectious disease, but right to the CF center at chop. Will have genetic testing tomorrow.

Waiting is horrible.
 
B

bdd9623

Guest
Hi, I am new to the forums here but am looking for people with information.

My son is 8 yrs old. Just dropped from the 25% in weight to 3%. Has polyps in his nose, 4 serious lung infections in past year. Constantly coughing that only gets better upon nebulizing, fought low grade fevers for past 3 months, belly aches all the time, tired all the time, enlarged lungs seen on x-ray a week ago. Went to infectious disease at Children's Hospital in Phila. Had sweat test. Came back borderline high at 56. Results not sent to infectious disease, but right to the CF center at chop. Will have genetic testing tomorrow.

Waiting is horrible.
 
B

bdd9623

Guest
Hi, I am new to the forums here but am looking for people with information.

My son is 8 yrs old. Just dropped from the 25% in weight to 3%. Has polyps in his nose, 4 serious lung infections in past year. Constantly coughing that only gets better upon nebulizing, fought low grade fevers for past 3 months, belly aches all the time, tired all the time, enlarged lungs seen on x-ray a week ago. Went to infectious disease at Children's Hospital in Phila. Had sweat test. Came back borderline high at 56. Results not sent to infectious disease, but right to the CF center at chop. Will have genetic testing tomorrow.

Waiting is horrible.
 
B

bdd9623

Guest
Hi, I am new to the forums here but am looking for people with information.

My son is 8 yrs old. Just dropped from the 25% in weight to 3%. Has polyps in his nose, 4 serious lung infections in past year. Constantly coughing that only gets better upon nebulizing, fought low grade fevers for past 3 months, belly aches all the time, tired all the time, enlarged lungs seen on x-ray a week ago. Went to infectious disease at Children's Hospital in Phila. Had sweat test. Came back borderline high at 56. Results not sent to infectious disease, but right to the CF center at chop. Will have genetic testing tomorrow.

Waiting is horrible.
 
B

bdd9623

Guest
Hi, I am new to the forums here but am looking for people with information.
<br />
<br />My son is 8 yrs old. Just dropped from the 25% in weight to 3%. Has polyps in his nose, 4 serious lung infections in past year. Constantly coughing that only gets better upon nebulizing, fought low grade fevers for past 3 months, belly aches all the time, tired all the time, enlarged lungs seen on x-ray a week ago. Went to infectious disease at Children's Hospital in Phila. Had sweat test. Came back borderline high at 56. Results not sent to infectious disease, but right to the CF center at chop. Will have genetic testing tomorrow.
<br />
<br />Waiting is horrible.
 
J

JazzysMom

New member
Waiting is horrible! It definitely sounds like CF to me & the good thing about it is that you can get the proper care for your son.

You will see a different kid when he gets the right care!

HUGS & we are here to listen!
 
J

JazzysMom

New member
Waiting is horrible! It definitely sounds like CF to me & the good thing about it is that you can get the proper care for your son.

You will see a different kid when he gets the right care!

HUGS & we are here to listen!
 
J

JazzysMom

New member
Waiting is horrible! It definitely sounds like CF to me & the good thing about it is that you can get the proper care for your son.

You will see a different kid when he gets the right care!

HUGS & we are here to listen!
 
J

JazzysMom

New member
Waiting is horrible! It definitely sounds like CF to me & the good thing about it is that you can get the proper care for your son.

You will see a different kid when he gets the right care!

HUGS & we are here to listen!
 
J

JazzysMom

New member
Waiting is horrible! It definitely sounds like CF to me & the good thing about it is that you can get the proper care for your son.
<br />
<br />You will see a different kid when he gets the right care!
<br />
<br />HUGS & we are here to listen!
 
J

JORDYSMOM

New member
Sorry you are in that waiting limbo. It was very rough for us as well. The diagnosis was awful, but once we made it past the initial trauma, and got our son on a treatment plan, it got easier, and he became healthier. This site helped me tremendously.

Nobody wants to hear that their child has CF, but getting the proper care can make a huge difference. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Sorry you are in that waiting limbo. It was very rough for us as well. The diagnosis was awful, but once we made it past the initial trauma, and got our son on a treatment plan, it got easier, and he became healthier. This site helped me tremendously.

Nobody wants to hear that their child has CF, but getting the proper care can make a huge difference. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Sorry you are in that waiting limbo. It was very rough for us as well. The diagnosis was awful, but once we made it past the initial trauma, and got our son on a treatment plan, it got easier, and he became healthier. This site helped me tremendously.

Nobody wants to hear that their child has CF, but getting the proper care can make a huge difference. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Sorry you are in that waiting limbo. It was very rough for us as well. The diagnosis was awful, but once we made it past the initial trauma, and got our son on a treatment plan, it got easier, and he became healthier. This site helped me tremendously.

Nobody wants to hear that their child has CF, but getting the proper care can make a huge difference. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Sorry you are in that waiting limbo. It was very rough for us as well. The diagnosis was awful, but once we made it past the initial trauma, and got our son on a treatment plan, it got easier, and he became healthier. This site helped me tremendously.
<br />
<br />Nobody wants to hear that their child has CF, but getting the proper care can make a huge difference. Please keep us posted.
<br />
<br />Stacey
 
B

bdd9623

Guest
Thank you for your thoughts. This has been such a terrible year. My daughter (Aidan's twin) has had lyme's twice, serious asthma and ADD- all since June, 2008. We thought my oldest son had ADD - took him to the neurologist only to find that he has a seizure disorder where he has over 500 seizures a day. Basically walking around in a fog since he was born. 1st medication he took made him suicidal. That was over x-mas. He is doing well on his new medicine. Now this. I hate it when people say, don't worry, it will be nothing because I have had to fight to get diagnosis for each situation. Thank god for my pediatrician who believes in me. It is all the other docs, friends and family who don't really listen. I appreciate your honesty.
 
B

bdd9623

Guest
Thank you for your thoughts. This has been such a terrible year. My daughter (Aidan's twin) has had lyme's twice, serious asthma and ADD- all since June, 2008. We thought my oldest son had ADD - took him to the neurologist only to find that he has a seizure disorder where he has over 500 seizures a day. Basically walking around in a fog since he was born. 1st medication he took made him suicidal. That was over x-mas. He is doing well on his new medicine. Now this. I hate it when people say, don't worry, it will be nothing because I have had to fight to get diagnosis for each situation. Thank god for my pediatrician who believes in me. It is all the other docs, friends and family who don't really listen. I appreciate your honesty.
 
B

bdd9623

Guest
Thank you for your thoughts. This has been such a terrible year. My daughter (Aidan's twin) has had lyme's twice, serious asthma and ADD- all since June, 2008. We thought my oldest son had ADD - took him to the neurologist only to find that he has a seizure disorder where he has over 500 seizures a day. Basically walking around in a fog since he was born. 1st medication he took made him suicidal. That was over x-mas. He is doing well on his new medicine. Now this. I hate it when people say, don't worry, it will be nothing because I have had to fight to get diagnosis for each situation. Thank god for my pediatrician who believes in me. It is all the other docs, friends and family who don't really listen. I appreciate your honesty.
 
B

bdd9623

Guest
Thank you for your thoughts. This has been such a terrible year. My daughter (Aidan's twin) has had lyme's twice, serious asthma and ADD- all since June, 2008. We thought my oldest son had ADD - took him to the neurologist only to find that he has a seizure disorder where he has over 500 seizures a day. Basically walking around in a fog since he was born. 1st medication he took made him suicidal. That was over x-mas. He is doing well on his new medicine. Now this. I hate it when people say, don't worry, it will be nothing because I have had to fight to get diagnosis for each situation. Thank god for my pediatrician who believes in me. It is all the other docs, friends and family who don't really listen. I appreciate your honesty.
 
B

bdd9623

Guest
Thank you for your thoughts. This has been such a terrible year. My daughter (Aidan's twin) has had lyme's twice, serious asthma and ADD- all since June, 2008. We thought my oldest son had ADD - took him to the neurologist only to find that he has a seizure disorder where he has over 500 seizures a day. Basically walking around in a fog since he was born. 1st medication he took made him suicidal. That was over x-mas. He is doing well on his new medicine. Now this. I hate it when people say, don't worry, it will be nothing because I have had to fight to get diagnosis for each situation. Thank god for my pediatrician who believes in me. It is all the other docs, friends and family who don't really listen. I appreciate your honesty.
 
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