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angluna
04-19-2007, 12:38 AM
Hello~I am new to this site, but not very knowledgeable. I have a 4 yr old son with CF but he hs never been sick. Aside from the instance of him being diagnosed at 2 mos. he is a perfectly healthy child. He hasn't been on any meds due to insurance issues for 2 yrs and yet he is still healthy. When I read all the info on this site it makes me believe that he should be more sick. THANK GOD he isn't. But what should I do? My only concern is when he goes to the bathroom, he always has diarrhea. I need lots of help and advice. I need all the info I can get. pleeease help!!!!

angluna
04-19-2007, 12:38 AM
Hello~I am new to this site, but not very knowledgeable. I have a 4 yr old son with CF but he hs never been sick. Aside from the instance of him being diagnosed at 2 mos. he is a perfectly healthy child. He hasn't been on any meds due to insurance issues for 2 yrs and yet he is still healthy. When I read all the info on this site it makes me believe that he should be more sick. THANK GOD he isn't. But what should I do? My only concern is when he goes to the bathroom, he always has diarrhea. I need lots of help and advice. I need all the info I can get. pleeease help!!!!

angluna
04-19-2007, 12:38 AM
Hello~I am new to this site, but not very knowledgeable. I have a 4 yr old son with CF but he hs never been sick. Aside from the instance of him being diagnosed at 2 mos. he is a perfectly healthy child. He hasn't been on any meds due to insurance issues for 2 yrs and yet he is still healthy. When I read all the info on this site it makes me believe that he should be more sick. THANK GOD he isn't. But what should I do? My only concern is when he goes to the bathroom, he always has diarrhea. I need lots of help and advice. I need all the info I can get. pleeease help!!!!

NoExcuses
04-19-2007, 01:40 AM
I would recommend going to a CF Center.

Read as much as you can about medications that CFer's take. Albuterol (open up the airways), Pulmozyme (to thin mucus), High Frequency Chest Compression (the Vest).

Please go to my blog, scroll down all the way to the bottom to "categories" on the left. Click "warwick". Dr. Warwick's clinic in Minnesota has the longest lifespan of CF patient.

He has written a letter about treating CF... I would start reading there.

Remember - to live long with CF, the focus must be on preventative treatment. Not treating symptoms once they arise. This is a progressive disease, so just because no symptoms of CF appear now doesn't mean that they won't in the future.

NoExcuses
04-19-2007, 01:40 AM
I would recommend going to a CF Center.

Read as much as you can about medications that CFer's take. Albuterol (open up the airways), Pulmozyme (to thin mucus), High Frequency Chest Compression (the Vest).

Please go to my blog, scroll down all the way to the bottom to "categories" on the left. Click "warwick". Dr. Warwick's clinic in Minnesota has the longest lifespan of CF patient.

He has written a letter about treating CF... I would start reading there.

Remember - to live long with CF, the focus must be on preventative treatment. Not treating symptoms once they arise. This is a progressive disease, so just because no symptoms of CF appear now doesn't mean that they won't in the future.

NoExcuses
04-19-2007, 01:40 AM
I would recommend going to a CF Center.

Read as much as you can about medications that CFer's take. Albuterol (open up the airways), Pulmozyme (to thin mucus), High Frequency Chest Compression (the Vest).

Please go to my blog, scroll down all the way to the bottom to "categories" on the left. Click "warwick". Dr. Warwick's clinic in Minnesota has the longest lifespan of CF patient.

He has written a letter about treating CF... I would start reading there.

Remember - to live long with CF, the focus must be on preventative treatment. Not treating symptoms once they arise. This is a progressive disease, so just because no symptoms of CF appear now doesn't mean that they won't in the future.

sue35
04-19-2007, 09:40 AM
Also keep in mind your child is only 4. I was perfectly healthy at 4 also. I didn't even get diagnosed until 6. Being healthy at that young an age doesn't tell you anything about how it will be in the future. The bad thing about CF is that one minute you are fine and then next you can be really sick.

I agree with what Amy says, I read your other post and now that you have insurance your child should really be on the preventitve medicines. Good luck!

sue35
04-19-2007, 09:40 AM
Also keep in mind your child is only 4. I was perfectly healthy at 4 also. I didn't even get diagnosed until 6. Being healthy at that young an age doesn't tell you anything about how it will be in the future. The bad thing about CF is that one minute you are fine and then next you can be really sick.

I agree with what Amy says, I read your other post and now that you have insurance your child should really be on the preventitve medicines. Good luck!

sue35
04-19-2007, 09:40 AM
Also keep in mind your child is only 4. I was perfectly healthy at 4 also. I didn't even get diagnosed until 6. Being healthy at that young an age doesn't tell you anything about how it will be in the future. The bad thing about CF is that one minute you are fine and then next you can be really sick.

I agree with what Amy says, I read your other post and now that you have insurance your child should really be on the preventitve medicines. Good luck!

Emily65Roses
04-19-2007, 10:04 PM
I was also pretty damn healthy when I was 4. I ate everything in sight, and I was a chubby little kid. Little to no lung trouble. That didn't kick in hard until I was 16. *shrug*

Emily65Roses
04-19-2007, 10:04 PM
I was also pretty damn healthy when I was 4. I ate everything in sight, and I was a chubby little kid. Little to no lung trouble. That didn't kick in hard until I was 16. *shrug*

Emily65Roses
04-19-2007, 10:04 PM
I was also pretty damn healthy when I was 4. I ate everything in sight, and I was a chubby little kid. Little to no lung trouble. That didn't kick in hard until I was 16. *shrug*

lightNlife
04-19-2007, 10:36 PM
I hope you'll be able to work something out with insurance to get your kid the meds he needs. You run the risk of him having MAJOR problems down the road if you aren't able to get him squared away early on. Insurance can be a pain in the tush, but you have a responsibility to care for your child as best you can. There's help available, but you need to be proactive about it.

lightNlife
04-19-2007, 10:36 PM
I hope you'll be able to work something out with insurance to get your kid the meds he needs. You run the risk of him having MAJOR problems down the road if you aren't able to get him squared away early on. Insurance can be a pain in the tush, but you have a responsibility to care for your child as best you can. There's help available, but you need to be proactive about it.

lightNlife
04-19-2007, 10:36 PM
I hope you'll be able to work something out with insurance to get your kid the meds he needs. You run the risk of him having MAJOR problems down the road if you aren't able to get him squared away early on. Insurance can be a pain in the tush, but you have a responsibility to care for your child as best you can. There's help available, but you need to be proactive about it.

Alyssa
04-20-2007, 01:15 AM
I have a 21 year old son with no symptoms, so it can happen, but we will not know when that will change, he is still followed with a CF doctor to make sure we aren't missing something -- stay informed, and count your blessings now. If he has diarrhea I'm assuming he is pancreatic insufficient -- insurance or not I think you would be wise to figure out a way of getting the enzymes that he needs. He needs to get all the nutritional value he can from his food. I know with Tobi and Pulmozyme there are programs in place for the uninsured and under insured to be able to get the products -- perhaps there is an enzyme program as well. Is your son getting regular 3 month check ups with a CFF certified doctor?

Alyssa
04-20-2007, 01:15 AM
I have a 21 year old son with no symptoms, so it can happen, but we will not know when that will change, he is still followed with a CF doctor to make sure we aren't missing something -- stay informed, and count your blessings now. If he has diarrhea I'm assuming he is pancreatic insufficient -- insurance or not I think you would be wise to figure out a way of getting the enzymes that he needs. He needs to get all the nutritional value he can from his food. I know with Tobi and Pulmozyme there are programs in place for the uninsured and under insured to be able to get the products -- perhaps there is an enzyme program as well. Is your son getting regular 3 month check ups with a CFF certified doctor?

Alyssa
04-20-2007, 01:15 AM
I have a 21 year old son with no symptoms, so it can happen, but we will not know when that will change, he is still followed with a CF doctor to make sure we aren't missing something -- stay informed, and count your blessings now. If he has diarrhea I'm assuming he is pancreatic insufficient -- insurance or not I think you would be wise to figure out a way of getting the enzymes that he needs. He needs to get all the nutritional value he can from his food. I know with Tobi and Pulmozyme there are programs in place for the uninsured and under insured to be able to get the products -- perhaps there is an enzyme program as well. Is your son getting regular 3 month check ups with a CFF certified doctor?

mtowler
04-21-2007, 07:49 PM
Don't worry about being alone as we are all out there for you !

I have a 3 year old that was diagnosed last year and it hurts like hell to think that my daughter was living a normal life until she wsa diagnosed. We would take her to a doctor and nothing was said until last year. Keep positive and keep thinking that you can make the childs life normal !!!

mtowler
04-21-2007, 07:49 PM
Don't worry about being alone as we are all out there for you !

I have a 3 year old that was diagnosed last year and it hurts like hell to think that my daughter was living a normal life until she wsa diagnosed. We would take her to a doctor and nothing was said until last year. Keep positive and keep thinking that you can make the childs life normal !!!

mtowler
04-21-2007, 07:49 PM
Don't worry about being alone as we are all out there for you !

I have a 3 year old that was diagnosed last year and it hurts like hell to think that my daughter was living a normal life until she wsa diagnosed. We would take her to a doctor and nothing was said until last year. Keep positive and keep thinking that you can make the childs life normal !!!