Rainbow babies clinic in cleveland ohio.

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PlumPerfect

New member
I stopped in to our local health food store today and was aking what I could suppliment into ds's milk to add protien and or iron. Last time I was in there the lady told me the owners had 2 children with cf. I felt blessed in knowing that alone. Today the fater and one of the sons ( the 30 year old who has had lung tranplant) I had the oppertunity to talk to them and they highly reccomended the cleveland clinic and said it was one of the top 5 inthe nation and its a study clinic. the son told me that all his affiliates from the normally reccomended childrens hospital in our region were all past, wherre all of his affiliate at the cleveland clinic are still alive and well. I don't even go to Riley, the usual reccomended here, we are going to the local childrens hospital which is a newer addition and as many have noticed my dr. has a good rapor but bad bed side manor.

Has anyone heard of this clinic or go to it? I don't care that it would be a 4 hour drive if it the best care for him. I guess I just don't feel right where we are at.
 
P

PlumPerfect

New member
I stopped in to our local health food store today and was aking what I could suppliment into ds's milk to add protien and or iron. Last time I was in there the lady told me the owners had 2 children with cf. I felt blessed in knowing that alone. Today the fater and one of the sons ( the 30 year old who has had lung tranplant) I had the oppertunity to talk to them and they highly reccomended the cleveland clinic and said it was one of the top 5 inthe nation and its a study clinic. the son told me that all his affiliates from the normally reccomended childrens hospital in our region were all past, wherre all of his affiliate at the cleveland clinic are still alive and well. I don't even go to Riley, the usual reccomended here, we are going to the local childrens hospital which is a newer addition and as many have noticed my dr. has a good rapor but bad bed side manor.

Has anyone heard of this clinic or go to it? I don't care that it would be a 4 hour drive if it the best care for him. I guess I just don't feel right where we are at.
 
P

PlumPerfect

New member
I stopped in to our local health food store today and was aking what I could suppliment into ds's milk to add protien and or iron. Last time I was in there the lady told me the owners had 2 children with cf. I felt blessed in knowing that alone. Today the fater and one of the sons ( the 30 year old who has had lung tranplant) I had the oppertunity to talk to them and they highly reccomended the cleveland clinic and said it was one of the top 5 inthe nation and its a study clinic. the son told me that all his affiliates from the normally reccomended childrens hospital in our region were all past, wherre all of his affiliate at the cleveland clinic are still alive and well. I don't even go to Riley, the usual reccomended here, we are going to the local childrens hospital which is a newer addition and as many have noticed my dr. has a good rapor but bad bed side manor.

Has anyone heard of this clinic or go to it? I don't care that it would be a 4 hour drive if it the best care for him. I guess I just don't feel right where we are at.
 
P

PlumPerfect

New member
I stopped in to our local health food store today and was aking what I could suppliment into ds's milk to add protien and or iron. Last time I was in there the lady told me the owners had 2 children with cf. I felt blessed in knowing that alone. Today the fater and one of the sons ( the 30 year old who has had lung tranplant) I had the oppertunity to talk to them and they highly reccomended the cleveland clinic and said it was one of the top 5 inthe nation and its a study clinic. the son told me that all his affiliates from the normally reccomended childrens hospital in our region were all past, wherre all of his affiliate at the cleveland clinic are still alive and well. I don't even go to Riley, the usual reccomended here, we are going to the local childrens hospital which is a newer addition and as many have noticed my dr. has a good rapor but bad bed side manor.

Has anyone heard of this clinic or go to it? I don't care that it would be a 4 hour drive if it the best care for him. I guess I just don't feel right where we are at.
 
P

PlumPerfect

New member
I stopped in to our local health food store today and was aking what I could suppliment into ds's milk to add protien and or iron. Last time I was in there the lady told me the owners had 2 children with cf. I felt blessed in knowing that alone. Today the fater and one of the sons ( the 30 year old who has had lung tranplant) I had the oppertunity to talk to them and they highly reccomended the cleveland clinic and said it was one of the top 5 inthe nation and its a study clinic. the son told me that all his affiliates from the normally reccomended childrens hospital in our region were all past, wherre all of his affiliate at the cleveland clinic are still alive and well. I don't even go to Riley, the usual reccomended here, we are going to the local childrens hospital which is a newer addition and as many have noticed my dr. has a good rapor but bad bed side manor.
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<br />Has anyone heard of this clinic or go to it? I don't care that it would be a 4 hour drive if it the best care for him. I guess I just don't feel right where we are at.
 
K

kaylasdad

New member
The Cleveland clinic & Rainbow babies & Children are two diffrent hospitals. My daughter go's to both. She go's to the cleve. clinic for check ups , she had two holes in her heart when she was born and had to have open heart. And she go's to Rainbows for her cf. We love her team. They work well with us on her care and they want us to be a big part in deciding whats best for her. The Dr. always says you know your dd better than we do.
If you go to cff.com the cf foundation, go to the tab treatments scroll down to care centers, at the bottom of the page you can review care center data. Hope it helps.
 
K

kaylasdad

New member
The Cleveland clinic & Rainbow babies & Children are two diffrent hospitals. My daughter go's to both. She go's to the cleve. clinic for check ups , she had two holes in her heart when she was born and had to have open heart. And she go's to Rainbows for her cf. We love her team. They work well with us on her care and they want us to be a big part in deciding whats best for her. The Dr. always says you know your dd better than we do.
If you go to cff.com the cf foundation, go to the tab treatments scroll down to care centers, at the bottom of the page you can review care center data. Hope it helps.
 
K

kaylasdad

New member
The Cleveland clinic & Rainbow babies & Children are two diffrent hospitals. My daughter go's to both. She go's to the cleve. clinic for check ups , she had two holes in her heart when she was born and had to have open heart. And she go's to Rainbows for her cf. We love her team. They work well with us on her care and they want us to be a big part in deciding whats best for her. The Dr. always says you know your dd better than we do.
If you go to cff.com the cf foundation, go to the tab treatments scroll down to care centers, at the bottom of the page you can review care center data. Hope it helps.
 
K

kaylasdad

New member
The Cleveland clinic & Rainbow babies & Children are two diffrent hospitals. My daughter go's to both. She go's to the cleve. clinic for check ups , she had two holes in her heart when she was born and had to have open heart. And she go's to Rainbows for her cf. We love her team. They work well with us on her care and they want us to be a big part in deciding whats best for her. The Dr. always says you know your dd better than we do.
If you go to cff.com the cf foundation, go to the tab treatments scroll down to care centers, at the bottom of the page you can review care center data. Hope it helps.
 
K

kaylasdad

New member
The Cleveland clinic & Rainbow babies & Children are two diffrent hospitals. My daughter go's to both. She go's to the cleve. clinic for check ups , she had two holes in her heart when she was born and had to have open heart. And she go's to Rainbows for her cf. We love her team. They work well with us on her care and they want us to be a big part in deciding whats best for her. The Dr. always says you know your dd better than we do.
<br />If you go to cff.com the cf foundation, go to the tab treatments scroll down to care centers, at the bottom of the page you can review care center data. Hope it helps.
<br />
 
B

Buckeye

New member
Ditto to what Kayla's Dad said - The Cleveland Clinic doesn't have a CF clinic, but Rainbow Babies & Children's does. We were orginally diagnosed at the CF Clinic at Rainbow and saw the staff there for a few months. We live about 2 1/2 hours from there so we ended up switching to our local clinic which is 12 minutes from our house instead. My son has quite a few doctors at this closer hospital so we felt if he was hospitalized it would be easier for them all to talk back and forth. But I absolutley LOVED the doctors up at Rainbows and would highly recommend them. I still question whether the switch was the right thing to do or not.
 
B

Buckeye

New member
Ditto to what Kayla's Dad said - The Cleveland Clinic doesn't have a CF clinic, but Rainbow Babies & Children's does. We were orginally diagnosed at the CF Clinic at Rainbow and saw the staff there for a few months. We live about 2 1/2 hours from there so we ended up switching to our local clinic which is 12 minutes from our house instead. My son has quite a few doctors at this closer hospital so we felt if he was hospitalized it would be easier for them all to talk back and forth. But I absolutley LOVED the doctors up at Rainbows and would highly recommend them. I still question whether the switch was the right thing to do or not.
 
B

Buckeye

New member
Ditto to what Kayla's Dad said - The Cleveland Clinic doesn't have a CF clinic, but Rainbow Babies & Children's does. We were orginally diagnosed at the CF Clinic at Rainbow and saw the staff there for a few months. We live about 2 1/2 hours from there so we ended up switching to our local clinic which is 12 minutes from our house instead. My son has quite a few doctors at this closer hospital so we felt if he was hospitalized it would be easier for them all to talk back and forth. But I absolutley LOVED the doctors up at Rainbows and would highly recommend them. I still question whether the switch was the right thing to do or not.
 
B

Buckeye

New member
Ditto to what Kayla's Dad said - The Cleveland Clinic doesn't have a CF clinic, but Rainbow Babies & Children's does. We were orginally diagnosed at the CF Clinic at Rainbow and saw the staff there for a few months. We live about 2 1/2 hours from there so we ended up switching to our local clinic which is 12 minutes from our house instead. My son has quite a few doctors at this closer hospital so we felt if he was hospitalized it would be easier for them all to talk back and forth. But I absolutley LOVED the doctors up at Rainbows and would highly recommend them. I still question whether the switch was the right thing to do or not.
 
B

Buckeye

New member
Ditto to what Kayla's Dad said - The Cleveland Clinic doesn't have a CF clinic, but Rainbow Babies & Children's does. We were orginally diagnosed at the CF Clinic at Rainbow and saw the staff there for a few months. We live about 2 1/2 hours from there so we ended up switching to our local clinic which is 12 minutes from our house instead. My son has quite a few doctors at this closer hospital so we felt if he was hospitalized it would be easier for them all to talk back and forth. But I absolutley LOVED the doctors up at Rainbows and would highly recommend them. I still question whether the switch was the right thing to do or not.
 
B

Buckeye

New member
After rereading your post I see that the guy who had the lung transplant would have had it done at The Cleveland Clinic then. It is ranked as the #4 hospital overall and #1 in Heart/Heart Surgery by US News & World Report. I know when I mention to a doctor down here that I went the the "Cleveland CF Clinic" they automatically think "Cleveland Clinic" so maybe that's where the confusion was?
 
B

Buckeye

New member
After rereading your post I see that the guy who had the lung transplant would have had it done at The Cleveland Clinic then. It is ranked as the #4 hospital overall and #1 in Heart/Heart Surgery by US News & World Report. I know when I mention to a doctor down here that I went the the "Cleveland CF Clinic" they automatically think "Cleveland Clinic" so maybe that's where the confusion was?
 
B

Buckeye

New member
After rereading your post I see that the guy who had the lung transplant would have had it done at The Cleveland Clinic then. It is ranked as the #4 hospital overall and #1 in Heart/Heart Surgery by US News & World Report. I know when I mention to a doctor down here that I went the the "Cleveland CF Clinic" they automatically think "Cleveland Clinic" so maybe that's where the confusion was?
 
B

Buckeye

New member
After rereading your post I see that the guy who had the lung transplant would have had it done at The Cleveland Clinic then. It is ranked as the #4 hospital overall and #1 in Heart/Heart Surgery by US News & World Report. I know when I mention to a doctor down here that I went the the "Cleveland CF Clinic" they automatically think "Cleveland Clinic" so maybe that's where the confusion was?
 
B

Buckeye

New member
After rereading your post I see that the guy who had the lung transplant would have had it done at The Cleveland Clinic then. It is ranked as the #4 hospital overall and #1 in Heart/Heart Surgery by US News & World Report. I know when I mention to a doctor down here that I went the the "Cleveland CF Clinic" they automatically think "Cleveland Clinic" so maybe that's where the confusion was?
 
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