My 10 yr old is having a horrible year..

C

ClairesMom

Guest
Well, I am blown away by the amazing support and "identification" that I get on this site..thank you all so much for your responses. I spoke to Claire's Dr today and mentioned all this research about HS - I was especially interested in the other posting above mine discussing problems with HS as well. It really does make sense because she started it about the same time her "hard year" started. Her Dr was very interested in this info and said that she would do some research on the HS and staph relationship and get back to me asap. She also said she would support us in discontinuing the HS for a while to see if she gets better. So that's what I'm going to try just for 90 days or something like that. She's still sick, out of the hospital 2 weeks now but well enough to go to school. I will be sure to post any info my Dr finds on HS because in my gut I just feel that she didn't slide this far down the scale in one year, it HAS to be this new treatment. Cross fingers!
 
C

ClairesMom

Guest
Well, I am blown away by the amazing support and "identification" that I get on this site..thank you all so much for your responses. I spoke to Claire's Dr today and mentioned all this research about HS - I was especially interested in the other posting above mine discussing problems with HS as well. It really does make sense because she started it about the same time her "hard year" started. Her Dr was very interested in this info and said that she would do some research on the HS and staph relationship and get back to me asap. She also said she would support us in discontinuing the HS for a while to see if she gets better. So that's what I'm going to try just for 90 days or something like that. She's still sick, out of the hospital 2 weeks now but well enough to go to school. I will be sure to post any info my Dr finds on HS because in my gut I just feel that she didn't slide this far down the scale in one year, it HAS to be this new treatment. Cross fingers!
 
C

ClairesMom

Guest
Well, I am blown away by the amazing support and "identification" that I get on this site..thank you all so much for your responses. I spoke to Claire's Dr today and mentioned all this research about HS - I was especially interested in the other posting above mine discussing problems with HS as well. It really does make sense because she started it about the same time her "hard year" started. Her Dr was very interested in this info and said that she would do some research on the HS and staph relationship and get back to me asap. She also said she would support us in discontinuing the HS for a while to see if she gets better. So that's what I'm going to try just for 90 days or something like that. She's still sick, out of the hospital 2 weeks now but well enough to go to school. I will be sure to post any info my Dr finds on HS because in my gut I just feel that she didn't slide this far down the scale in one year, it HAS to be this new treatment. Cross fingers!
 
C

ClairesMom

Guest
Well, I am blown away by the amazing support and "identification" that I get on this site..thank you all so much for your responses. I spoke to Claire's Dr today and mentioned all this research about HS - I was especially interested in the other posting above mine discussing problems with HS as well. It really does make sense because she started it about the same time her "hard year" started. Her Dr was very interested in this info and said that she would do some research on the HS and staph relationship and get back to me asap. She also said she would support us in discontinuing the HS for a while to see if she gets better. So that's what I'm going to try just for 90 days or something like that. She's still sick, out of the hospital 2 weeks now but well enough to go to school. I will be sure to post any info my Dr finds on HS because in my gut I just feel that she didn't slide this far down the scale in one year, it HAS to be this new treatment. Cross fingers!
 
C

ClairesMom

Guest
Well, I am blown away by the amazing support and "identification" that I get on this site..thank you all so much for your responses. I spoke to Claire's Dr today and mentioned all this research about HS - I was especially interested in the other posting above mine discussing problems with HS as well. It really does make sense because she started it about the same time her "hard year" started. Her Dr was very interested in this info and said that she would do some research on the HS and staph relationship and get back to me asap. She also said she would support us in discontinuing the HS for a while to see if she gets better. So that's what I'm going to try just for 90 days or something like that. She's still sick, out of the hospital 2 weeks now but well enough to go to school. I will be sure to post any info my Dr finds on HS because in my gut I just feel that she didn't slide this far down the scale in one year, it HAS to be this new treatment. Cross fingers!
 
T

teamrhiannon

New member
ClairesMom,
I am new here and was deeply moved by your post and the subsequent responses of the other posters. My daughter Rhiannon is 6 and she had been fairly healthy, as healthy as CF can be, until this past summer when she was started on hypertonic solution. I wonder now if that is her problem. She has always grown staph A. and can't seem to stay well since the start of hs. I too am at my wits end with this disease and the constant battle to keep my daughter healthy. Lately nothing has been working and the doctor has already said he's not sure what to do next. I fear she may not have the strength to get well. She has a feeding tube-which she hates- cause at night she coughs a lot and eventually throws up, despite a nissan. Enough about us, I am sorry. Its good to vent to people who actually know what this is like. Please let us know what you find out about the hs, I am really interested. I hope Claire is feeling better. Good luck!
 
T

teamrhiannon

New member
ClairesMom,
I am new here and was deeply moved by your post and the subsequent responses of the other posters. My daughter Rhiannon is 6 and she had been fairly healthy, as healthy as CF can be, until this past summer when she was started on hypertonic solution. I wonder now if that is her problem. She has always grown staph A. and can't seem to stay well since the start of hs. I too am at my wits end with this disease and the constant battle to keep my daughter healthy. Lately nothing has been working and the doctor has already said he's not sure what to do next. I fear she may not have the strength to get well. She has a feeding tube-which she hates- cause at night she coughs a lot and eventually throws up, despite a nissan. Enough about us, I am sorry. Its good to vent to people who actually know what this is like. Please let us know what you find out about the hs, I am really interested. I hope Claire is feeling better. Good luck!
 
T

teamrhiannon

New member
ClairesMom,
I am new here and was deeply moved by your post and the subsequent responses of the other posters. My daughter Rhiannon is 6 and she had been fairly healthy, as healthy as CF can be, until this past summer when she was started on hypertonic solution. I wonder now if that is her problem. She has always grown staph A. and can't seem to stay well since the start of hs. I too am at my wits end with this disease and the constant battle to keep my daughter healthy. Lately nothing has been working and the doctor has already said he's not sure what to do next. I fear she may not have the strength to get well. She has a feeding tube-which she hates- cause at night she coughs a lot and eventually throws up, despite a nissan. Enough about us, I am sorry. Its good to vent to people who actually know what this is like. Please let us know what you find out about the hs, I am really interested. I hope Claire is feeling better. Good luck!
 
T

teamrhiannon

New member
ClairesMom,
I am new here and was deeply moved by your post and the subsequent responses of the other posters. My daughter Rhiannon is 6 and she had been fairly healthy, as healthy as CF can be, until this past summer when she was started on hypertonic solution. I wonder now if that is her problem. She has always grown staph A. and can't seem to stay well since the start of hs. I too am at my wits end with this disease and the constant battle to keep my daughter healthy. Lately nothing has been working and the doctor has already said he's not sure what to do next. I fear she may not have the strength to get well. She has a feeding tube-which she hates- cause at night she coughs a lot and eventually throws up, despite a nissan. Enough about us, I am sorry. Its good to vent to people who actually know what this is like. Please let us know what you find out about the hs, I am really interested. I hope Claire is feeling better. Good luck!
 
T

teamrhiannon

New member
ClairesMom,
I am new here and was deeply moved by your post and the subsequent responses of the other posters. My daughter Rhiannon is 6 and she had been fairly healthy, as healthy as CF can be, until this past summer when she was started on hypertonic solution. I wonder now if that is her problem. She has always grown staph A. and can't seem to stay well since the start of hs. I too am at my wits end with this disease and the constant battle to keep my daughter healthy. Lately nothing has been working and the doctor has already said he's not sure what to do next. I fear she may not have the strength to get well. She has a feeding tube-which she hates- cause at night she coughs a lot and eventually throws up, despite a nissan. Enough about us, I am sorry. Its good to vent to people who actually know what this is like. Please let us know what you find out about the hs, I am really interested. I hope Claire is feeling better. Good luck!
 
You must log in or register to reply here.
Top