Toddler just Diagnosed

M

mneville

Guest
Hi Nicole. Our firstborn son was diagnosed at 8 days old thanks to NJ newborn screening. It was so hard in the beginning. But it gets easier, the routine, the meds.... He is now two and is just amazing! He is the greatest little thing, full of energy, 90% for weight, doing so well. So stay optimistic.

Daycare was a hard decision for us. We had to work but were not comfortable putting him in daycare so young. My mom quit her job to care for him. He now does play groups and such but I still am cautious esp during this season. Our doctors never warned us against daycare, it was just something I was at all happy about. We now have Baby #2 on the way so are looking at our options again. Good luck and have faith.

Megan
 
R

Ratatosk

Administrator
Staff member
Our son was diagnosed shortly after he was born. Today he's a busy 3 1/2 year old. Goes to preschool/daycare. Swimming lessons. Is all boy, loves the outdoors. Told me last week he doesn't LIKE the sun. He likes the SNOW!

He's been in daycare/preschool since he was 3 months old. Eventually he'll be going to regular school. We make sure he gets his flu shot every year. The director is great in terms of telling us if there are any bugs going around, handwashing.... A few weeks ago the "stomach flu" went around the school. DS was one of the few who DIDN'T get sick. His class size is fairly small -- 6-7 preschoolers.

It's a bit overwhelming. Okay, it's a LOT overwhelming. But eventually you'll get down to a routine.
 
R

Ratatosk

Administrator
Staff member
Our son was diagnosed shortly after he was born. Today he's a busy 3 1/2 year old. Goes to preschool/daycare. Swimming lessons. Is all boy, loves the outdoors. Told me last week he doesn't LIKE the sun. He likes the SNOW!

He's been in daycare/preschool since he was 3 months old. Eventually he'll be going to regular school. We make sure he gets his flu shot every year. The director is great in terms of telling us if there are any bugs going around, handwashing.... A few weeks ago the "stomach flu" went around the school. DS was one of the few who DIDN'T get sick. His class size is fairly small -- 6-7 preschoolers.

It's a bit overwhelming. Okay, it's a LOT overwhelming. But eventually you'll get down to a routine.
 
R

Ratatosk

Administrator
Staff member
Our son was diagnosed shortly after he was born. Today he's a busy 3 1/2 year old. Goes to preschool/daycare. Swimming lessons. Is all boy, loves the outdoors. Told me last week he doesn't LIKE the sun. He likes the SNOW!

He's been in daycare/preschool since he was 3 months old. Eventually he'll be going to regular school. We make sure he gets his flu shot every year. The director is great in terms of telling us if there are any bugs going around, handwashing.... A few weeks ago the "stomach flu" went around the school. DS was one of the few who DIDN'T get sick. His class size is fairly small -- 6-7 preschoolers.

It's a bit overwhelming. Okay, it's a LOT overwhelming. But eventually you'll get down to a routine.
 
A

Alyssa

New member
Hi Nicole,

Welcome to the site. You have been given a lot of great advice already so I won't repeat -- but one thing I want to point out is the 36 year old number is by no means "average" age. This is a very common misunderstanding and has been discussed at length on cystic-L and I'm assuming here too (but I don't know for sure) Anyway the 36 year old number is put out by the CFF and there are a lot of people who are upset by the use of that number (it makes fund raising a little easier to use a number with more shock value to it) It also scares the bageebies out of parents and patients !

I was very saddened when my 20 year old son said to me recently.... "well, since I will only live to be about 35, I guess I don't have very much time left" He totally misunderstood the information! I had used the CFF's numbers in my fund raising letter for the Great Strides walk and he read it that is what he thought! (Yes, I thought I had explained it to him when I composed the fund raising letter, but apparently I didn't do a very good job)

If you read carefully you will see it is not "average" but "median", which means you have to look at the math portion on how they arrive at that number.

Median vs Average with ANY number will give you drastically different results. There are many different examples out there - I'm sure a quick google search will help explain it to you.

When you are talking about CF, you have to take into consideration many different things, and peoples age at death can vary quite a bit -- (I know of a man who is 76 years old with a fairly complex case, and he is doing quite well still) so my point is, nobody knows for sure how things will turn out, but I wouldn't put much stock in the 36 year old stuff.
 
A

Alyssa

New member
Hi Nicole,

Welcome to the site. You have been given a lot of great advice already so I won't repeat -- but one thing I want to point out is the 36 year old number is by no means "average" age. This is a very common misunderstanding and has been discussed at length on cystic-L and I'm assuming here too (but I don't know for sure) Anyway the 36 year old number is put out by the CFF and there are a lot of people who are upset by the use of that number (it makes fund raising a little easier to use a number with more shock value to it) It also scares the bageebies out of parents and patients !

I was very saddened when my 20 year old son said to me recently.... "well, since I will only live to be about 35, I guess I don't have very much time left" He totally misunderstood the information! I had used the CFF's numbers in my fund raising letter for the Great Strides walk and he read it that is what he thought! (Yes, I thought I had explained it to him when I composed the fund raising letter, but apparently I didn't do a very good job)

If you read carefully you will see it is not "average" but "median", which means you have to look at the math portion on how they arrive at that number.

Median vs Average with ANY number will give you drastically different results. There are many different examples out there - I'm sure a quick google search will help explain it to you.

When you are talking about CF, you have to take into consideration many different things, and peoples age at death can vary quite a bit -- (I know of a man who is 76 years old with a fairly complex case, and he is doing quite well still) so my point is, nobody knows for sure how things will turn out, but I wouldn't put much stock in the 36 year old stuff.
 
A

Alyssa

New member
Hi Nicole,

Welcome to the site. You have been given a lot of great advice already so I won't repeat -- but one thing I want to point out is the 36 year old number is by no means "average" age. This is a very common misunderstanding and has been discussed at length on cystic-L and I'm assuming here too (but I don't know for sure) Anyway the 36 year old number is put out by the CFF and there are a lot of people who are upset by the use of that number (it makes fund raising a little easier to use a number with more shock value to it) It also scares the bageebies out of parents and patients !

I was very saddened when my 20 year old son said to me recently.... "well, since I will only live to be about 35, I guess I don't have very much time left" He totally misunderstood the information! I had used the CFF's numbers in my fund raising letter for the Great Strides walk and he read it that is what he thought! (Yes, I thought I had explained it to him when I composed the fund raising letter, but apparently I didn't do a very good job)

If you read carefully you will see it is not "average" but "median", which means you have to look at the math portion on how they arrive at that number.

Median vs Average with ANY number will give you drastically different results. There are many different examples out there - I'm sure a quick google search will help explain it to you.

When you are talking about CF, you have to take into consideration many different things, and peoples age at death can vary quite a bit -- (I know of a man who is 76 years old with a fairly complex case, and he is doing quite well still) so my point is, nobody knows for sure how things will turn out, but I wouldn't put much stock in the 36 year old stuff.
 
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