Some help for new mum of Cf 14 month old boy!

[patrish22]

Get him use to the routines now, and stay on top of it. Even if symptoms don't seem so bad. My kids did great with minimal symptoms until they hit their teens. Although it's not the same for everyone. I truly believe the more you do for him now the better he will be down the road. My kids never liked the vest, always telling me that it hurt andthey feel the manual pt is more effective, (their doctor feels this way too!) The joke in our family is "...no one hits us like our Mom!" I use the cups ( its easier on my arthritic hands). It's not an easy road, but the announcement of VX-770 can give us all hope! My son is an avid cyclist and says its almost as good as chest pt. You have come to the right place for guidance. The folks hereprovide an amazing wealth of information, as well as tremendous support!

 

[patrish22]

Get him use to the routines now, and stay on top of it. Even if symptoms don't seem so bad. My kids did great with minimal symptoms until they hit their teens. Although it's not the same for everyone. I truly believe the more you do for him now the better he will be down the road. My kids never liked the vest, always telling me that it hurt andthey feel the manual pt is more effective, (their doctor feels this way too!) The joke in our family is "...no one hits us like our Mom!" I use the cups ( its easier on my arthritic hands). It's not an easy road, but the announcement of VX-770 can give us all hope! My son is an avid cyclist and says its almost as good as chest pt. You have come to the right place for guidance. The folks hereprovide an amazing wealth of information, as well as tremendous support!

 

[Tisha]

It takes some time to get the hang of CF and learn to live with it and the treatments, but believe me it can be done! And never listen to those who say you can't! All in all, starting today you have very good prospects... <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep it up! Laugh a lot and make your child live a very happy life!! (and I really mean that: having a positive attitude and outlook on life, and making an effort to feel good every day no matter what, makes a huge impact on your general health, how well you overcome infections, even your digestion!)

 

[Tisha]

It takes some time to get the hang of CF and learn to live with it and the treatments, but believe me it can be done! And never listen to those who say you can't! All in all, starting today you have very good prospects... <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep it up! Laugh a lot and make your child live a very happy life!! (and I really mean that: having a positive attitude and outlook on life, and making an effort to feel good every day no matter what, makes a huge impact on your general health, how well you overcome infections, even your digestion!)

 

[Hardak]

Only advice my mom ever passed on from when I was that age was let me and my sister scream for a while each day to clean the airways, don't go neglecting them or anything but the more lungs are used early on the more you can work with later on.

 

[Hardak]

Only advice my mom ever passed on from when I was that age was let me and my sister scream for a while each day to clean the airways, don't go neglecting them or anything but the more lungs are used early on the more you can work with later on.

 

[AleksandraKaczynska]

I made my kids laught instead <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[AleksandraKaczynska]

I made my kids laught instead <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[litsa]

Thank you all for your amazing and so precious answers!!! You are all so great!!
I have never lost my strength or courage, even on the day I was told my baby had CF. I have always been a fighter and I wont give up now! I am very positive, I have already started on pt 3 times a day, he mostly enjoys it, he is such a lovely child! He is very active, never stays put, although he isnt walking yet! I play with him all day, make him laugh and let him scream, although I had no idea it helps the lungs!!
Tried Aquadek today, for the first time (we were on aquasol and eviol), OMG that stuff is disgusting!!! ANd it stains! Not to mention that its too expensive! Would you recommend any other choice for him to take all the vits he needs?
I already asked, but does any of you know if I can purchase the cups online? Also, I was told that mild excercise-later on of course- is better than vigorous one, is that correct? They suggested me swimming.
Thank you all again for your time, keep well.

 

[litsa]

Thank you all for your amazing and so precious answers!!! You are all so great!!
I have never lost my strength or courage, even on the day I was told my baby had CF. I have always been a fighter and I wont give up now! I am very positive, I have already started on pt 3 times a day, he mostly enjoys it, he is such a lovely child! He is very active, never stays put, although he isnt walking yet! I play with him all day, make him laugh and let him scream, although I had no idea it helps the lungs!!
Tried Aquadek today, for the first time (we were on aquasol and eviol), OMG that stuff is disgusting!!! ANd it stains! Not to mention that its too expensive! Would you recommend any other choice for him to take all the vits he needs?
I already asked, but does any of you know if I can purchase the cups online? Also, I was told that mild excercise-later on of course- is better than vigorous one, is that correct? They suggested me swimming.
Thank you all again for your time, keep well.

 

[Ratatosk]

The aquaadek made me gag -- smells nasty. DS is on chewable source CF vitamins now. Not sure if you have access to Source CF or Vitamax -- both make fruit flavored drops. The Aquaadeks never bothered ds, just ME!

We've been told exercise and be active is important in addition to doing CPT. So we're trying to find activities or sports DS is interested in for the long term. Currently he's in gymnastics. Summertime he takes tennis lessons. We need to get him back into swimming lessons and are looking at private lessons as he's terrified. We did skating last year. And his daycare keeps them active -- playing outside year round, lots of walks and activities in the summer.

 

[Ratatosk]

The aquaadek made me gag -- smells nasty. DS is on chewable source CF vitamins now. Not sure if you have access to Source CF or Vitamax -- both make fruit flavored drops. The Aquaadeks never bothered ds, just ME!

We've been told exercise and be active is important in addition to doing CPT. So we're trying to find activities or sports DS is interested in for the long term. Currently he's in gymnastics. Summertime he takes tennis lessons. We need to get him back into swimming lessons and are looking at private lessons as he's terrified. We did skating last year. And his daycare keeps them active -- playing outside year round, lots of walks and activities in the summer.

 

[AleksandraKaczynska]

Exercise - as much as possible - but when a kids start to caugh - stop for a moment - give a little rest and water - and ... run around again... that's our way <img src="i/expressions/face-icon-small-happy.gif" border="0">
AquAdeks is the best you can get in Eu - I think at least its true for Poland- it never bothered Asia. put in the end of the nimpl eform the bottel - - covere the opening by finger - and fill in with juice or milk even and strait into the mouth - it worked for us - with more growsome witamins and with Aquadeks - Asia liked it alot after what she was having before AquAdeks was available <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AleksandraKaczynska]

Exercise - as much as possible - but when a kids start to caugh - stop for a moment - give a little rest and water - and ... run around again... that's our way <img src="i/expressions/face-icon-small-happy.gif" border="0">
AquAdeks is the best you can get in Eu - I think at least its true for Poland- it never bothered Asia. put in the end of the nimpl eform the bottel - - covere the opening by finger - and fill in with juice or milk even and strait into the mouth - it worked for us - with more growsome witamins and with Aquadeks - Asia liked it alot after what she was having before AquAdeks was available <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[litsa]

Thank you Ratatosk and Aleksandra,
Will do Aquadek for now, since I got no choice!Cant just throw them away cause I dont like its colour or smell!!! its just that it stains a lot!!! How much do u give ur kids of that? Source Cf and Vitamax never heard of them, but will ask our doctor on our Tuesday appointment. been trying to do Dimi PT but today wasnt up to it and kept crying, feel so bad when I force him, though I knwo its for his own good. I think I managed to do more while he was breast feeding, but then again you only do sides like that and u have to keep changing! Anyway, Tuesday is our day, will meet with physio again and try to find out more about it.

Thank you lovely-strong-helpful mommies for your advice!!! Keep well!

 

[litsa]

Thank you Ratatosk and Aleksandra,
Will do Aquadek for now, since I got no choice!Cant just throw them away cause I dont like its colour or smell!!! its just that it stains a lot!!! How much do u give ur kids of that? Source Cf and Vitamax never heard of them, but will ask our doctor on our Tuesday appointment. been trying to do Dimi PT but today wasnt up to it and kept crying, feel so bad when I force him, though I knwo its for his own good. I think I managed to do more while he was breast feeding, but then again you only do sides like that and u have to keep changing! Anyway, Tuesday is our day, will meet with physio again and try to find out more about it.

Thank you lovely-strong-helpful mommies for your advice!!! Keep well!

 

[AleksandraKaczynska]

When i spill AquADEk's on cloths - sometimes it happens - I wash it with soap and cold water right away and then with normal laundry - it washes off - but if I leave it I have to use a stain remover. If it doesn't wash off first time - it will second <img src="i/expressions/face-icon-small-happy.gif" border="0">
Asia gets 2,5 ml a day - but she is 4 years old.
AquADEks is good cause it has more then just vit. ADEK and doesn't need the body to absorb fat to absorb vitamins.

 

[AleksandraKaczynska]

When i spill AquADEk's on cloths - sometimes it happens - I wash it with soap and cold water right away and then with normal laundry - it washes off - but if I leave it I have to use a stain remover. If it doesn't wash off first time - it will second <img src="i/expressions/face-icon-small-happy.gif" border="0">
Asia gets 2,5 ml a day - but she is 4 years old.
AquADEks is good cause it has more then just vit. ADEK and doesn't need the body to absorb fat to absorb vitamins.

 

[litsa]

thank you aleksandra, so far no stains on clothes! mainly on floor!! I tasted it today, not that bad!its more scary in appearance than in taste!!! Dimi takes it quite easily. Our doctor said 2 ml per day, Dimi is 14months! Gosh somtimes I wonder how well informed are our doctors over here on CF and all the med kids should be on... Today wasnt a good day as far as pt is concerned..We laughed a lot, but he kept crying so hard that I didnt do any before bed time.. Will do some extra jumps on our ball and some extra pt tomorrow. Keep well and thanks again!

 

[litsa]

thank you aleksandra, so far no stains on clothes! mainly on floor!! I tasted it today, not that bad!its more scary in appearance than in taste!!! Dimi takes it quite easily. Our doctor said 2 ml per day, Dimi is 14months! Gosh somtimes I wonder how well informed are our doctors over here on CF and all the med kids should be on... Today wasnt a good day as far as pt is concerned..We laughed a lot, but he kept crying so hard that I didnt do any before bed time.. Will do some extra jumps on our ball and some extra pt tomorrow. Keep well and thanks again!