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

[litsa]

Good evening everyone!!
I'm mum of 14 month old boy with cf (F508del/2789+5G>A, think that is the gonotype). Are there any other parents of kids with this mutation?If so, please help me! We found out about it when my boy was 7 months old-summer time, he lost weight, was just starting giving him solid food, so we were hospitalised with electrolytes soaring. At this point I believe I am handling the roytine well, but got alarmed after reading in the forums how over cautious mothers are with their children! I realise the seriousness of it, but have I been too loose with his care? I give him the vitamins daily-missed them a couple of times-, he is on creon twice daily. I have one of those bouncing balls and i try to excercise him on that daily, since the physiotherapist at the CF center we go, showed me the routine, but i didnt quite understand it and since Dimi was crying I didnt ask further. Am I doing him horrible harm by not doing pt??I am panicking and need some advise!
I also wanted to ask about the palm cups(precussors). Are they equally good as physio?Do I have to be shown how to use them? Are they used nowadays for pt?
Thank you very much and I apologise for the long message. Hope you are all well and healthy.

 

[litsa]

Good evening everyone!!
I'm mum of 14 month old boy with cf (F508del/2789+5G>A, think that is the gonotype). Are there any other parents of kids with this mutation?If so, please help me! We found out about it when my boy was 7 months old-summer time, he lost weight, was just starting giving him solid food, so we were hospitalised with electrolytes soaring. At this point I believe I am handling the roytine well, but got alarmed after reading in the forums how over cautious mothers are with their children! I realise the seriousness of it, but have I been too loose with his care? I give him the vitamins daily-missed them a couple of times-, he is on creon twice daily. I have one of those bouncing balls and i try to excercise him on that daily, since the physiotherapist at the CF center we go, showed me the routine, but i didnt quite understand it and since Dimi was crying I didnt ask further. Am I doing him horrible harm by not doing pt??I am panicking and need some advise!
I also wanted to ask about the palm cups(precussors). Are they equally good as physio?Do I have to be shown how to use them? Are they used nowadays for pt?
Thank you very much and I apologise for the long message. Hope you are all well and healthy.

 

[Ratatosk]

It's important to keep his lungs clear and healthy, so IMO, you need to be doing pt. We started out using the palm cups, but switched to hands. Since you always have your hands, might misplace percussion cups.
Don't panic! Just take it one step at a time, try to get into a routine and things should fall into place -- you'll eventually become more organized and meds/treatments will become second nature. I do recall DS crying and struggling at this age, but we just tried to keep him occupied by singing or having him watch cartoons during treatments.You mention creon twice a day... Doesn't he get it with his meals? DS gets his any time he eats.

 

[Ratatosk]

It's important to keep his lungs clear and healthy, so IMO, you need to be doing pt. We started out using the palm cups, but switched to hands. Since you always have your hands, might misplace percussion cups.
Don't panic! Just take it one step at a time, try to get into a routine and things should fall into place -- you'll eventually become more organized and meds/treatments will become second nature. I do recall DS crying and struggling at this age, but we just tried to keep him occupied by singing or having him watch cartoons during treatments.You mention creon twice a day... Doesn't he get it with his meals? DS gets his any time he eats.

 

[litsa]

Ratatosk thank you for your reply!!! Our gonotype is supposed to be a mild form of CF, not sure whether that means a more loose approach for me o r whether I should be more strict, especially with his PT.
Dimi has 3 main meals a day plus two snack plus I'm breast feeding. Doctor advised enzymes with two of his main meals, I guess its because he is ok in his weight? he never had issues with weight, only that time he got sick hust before we got his diagnosis.
How old is yours? If you dont wish to share here send me a PM,if you wish. Thanks again!

 

[litsa]

Ratatosk thank you for your reply!!! Our gonotype is supposed to be a mild form of CF, not sure whether that means a more loose approach for me o r whether I should be more strict, especially with his PT.
Dimi has 3 main meals a day plus two snack plus I'm breast feeding. Doctor advised enzymes with two of his main meals, I guess its because he is ok in his weight? he never had issues with weight, only that time he got sick hust before we got his diagnosis.
How old is yours? If you dont wish to share here send me a PM,if you wish. Thanks again!

 

[AleksandraKaczynska]

Hi
my daughter also has a milder case, however I was told to be very strickt about her PT and inhalations. Also to keep a high calarie diet, 5 meals a day and that sometimes she will get creon just to help her even though she does not need creon on regular bases.
They meant that when the levels of elastaze in her poop will start going down - she will get creon for some time so her pancreas get time to "rest" a bit.
We use only hypertonic saline for inhalations.
My daughter is know 4 years old.Her weight has also always been fine - she is even tall for her age : 109 cm and just over 18kg.
She has been sick only once - on bactrim - and never needed hospital stays.
Howevre a milder form doesn't mean being less strict - I guess - it means you have to very watchfull so the cf doesn't get building up - esspecially when you see uour child is just fine. But it means less medicine and cf trouble starting on later then in most cases.

 

[AleksandraKaczynska]

Hi
my daughter also has a milder case, however I was told to be very strickt about her PT and inhalations. Also to keep a high calarie diet, 5 meals a day and that sometimes she will get creon just to help her even though she does not need creon on regular bases.
They meant that when the levels of elastaze in her poop will start going down - she will get creon for some time so her pancreas get time to "rest" a bit.
We use only hypertonic saline for inhalations.
My daughter is know 4 years old.Her weight has also always been fine - she is even tall for her age : 109 cm and just over 18kg.
She has been sick only once - on bactrim - and never needed hospital stays.
Howevre a milder form doesn't mean being less strict - I guess - it means you have to very watchfull so the cf doesn't get building up - esspecially when you see uour child is just fine. But it means less medicine and cf trouble starting on later then in most cases.

 

[Ratatosk]

DS is 8 years old. He needs enzymes (creon) with most foods except for juice, clear candies, otherwise he gets very loose stools. He was formula fed and on a higher calorie formula to help maintain/gain weight.

Even though his issues were more digestive from the start, his doctor had us do CPT 4 times a day while I was on maternity leave and we dropped down to 3 times a day when I went back to work. It helped to have a schedule for cpt, meds, feedings. We increase CPT if he gets a cough or cold.

We still struggle with eating and weight gain. Currently he has more sinus issues, seems always have a stuffed up nose.

 

[Ratatosk]

DS is 8 years old. He needs enzymes (creon) with most foods except for juice, clear candies, otherwise he gets very loose stools. He was formula fed and on a higher calorie formula to help maintain/gain weight.

Even though his issues were more digestive from the start, his doctor had us do CPT 4 times a day while I was on maternity leave and we dropped down to 3 times a day when I went back to work. It helped to have a schedule for cpt, meds, feedings. We increase CPT if he gets a cough or cold.

We still struggle with eating and weight gain. Currently he has more sinus issues, seems always have a stuffed up nose.

 

[sjzbell]

Litsa, We were diagnosed @ 18 mos, so I feel what you r going thru. But my son is now almost 12 yrs old & doing beautifully!! We have same gene makeup as you guys and they tell us he has a "MILD" case. Well, I truly believe that every single person w/ CF is different. I don't care the genotype they're born with. All that does is give the docs something to go off of to try & guide you. Don't get me wrong, it's helpful, but everyone's different. My son is supposedly pancreatic SUF-ficient due to these genes, but that hasn't been the case. He can't go w/out Creon or he as bad tummy problems, stool problems, & starts to lose weight. So the Creon works for him. In regards to the percussion, DO IT! No matter how it works for you....by hand, by vest (which we have & would be lost without), or by any other means. He may fuss or cry, but know that it's for his health & you have to be the strong one now until he can understand. I agree with using the tactics of the cartoons or toys or whatever you need, but sometimes, you can't appease them. But it has to be done. I truly believe percussion has been a vital part of my son's tx & the reason we've never been in the hospital to date!! We've had antibiotics from time to time, but that's minimal compared to what some CF'ers go thru. We are truly blessed!!! I too have read about how overly cautious some parents are. But remember, their circumstances are different than yours. You have to do what's best for YOUR family & child. In our case, I knew & still believe, that if I went around slathering him with sanitizer every 5 minutes, he was going to have a hard time keeping up with that habit & I also felt that he would actually be MORE prone to getting sicker when he ended up going to school & was exposed to all of the bajillions of germs there. Don't panic, just know that the meds you give him & the percussion you do are the basis for a healthy CF child. He will thank you one day for helping him stay as healthy as possible! And you'll be sooooo glad you did everything in your power to get him to the great state he'll be at!! Best of luck!

 

[sjzbell]

Litsa, We were diagnosed @ 18 mos, so I feel what you r going thru. But my son is now almost 12 yrs old & doing beautifully!! We have same gene makeup as you guys and they tell us he has a "MILD" case. Well, I truly believe that every single person w/ CF is different. I don't care the genotype they're born with. All that does is give the docs something to go off of to try & guide you. Don't get me wrong, it's helpful, but everyone's different. My son is supposedly pancreatic SUF-ficient due to these genes, but that hasn't been the case. He can't go w/out Creon or he as bad tummy problems, stool problems, & starts to lose weight. So the Creon works for him. In regards to the percussion, DO IT! No matter how it works for you....by hand, by vest (which we have & would be lost without), or by any other means. He may fuss or cry, but know that it's for his health & you have to be the strong one now until he can understand. I agree with using the tactics of the cartoons or toys or whatever you need, but sometimes, you can't appease them. But it has to be done. I truly believe percussion has been a vital part of my son's tx & the reason we've never been in the hospital to date!! We've had antibiotics from time to time, but that's minimal compared to what some CF'ers go thru. We are truly blessed!!! I too have read about how overly cautious some parents are. But remember, their circumstances are different than yours. You have to do what's best for YOUR family & child. In our case, I knew & still believe, that if I went around slathering him with sanitizer every 5 minutes, he was going to have a hard time keeping up with that habit & I also felt that he would actually be MORE prone to getting sicker when he ended up going to school & was exposed to all of the bajillions of germs there. Don't panic, just know that the meds you give him & the percussion you do are the basis for a healthy CF child. He will thank you one day for helping him stay as healthy as possible! And you'll be sooooo glad you did everything in your power to get him to the great state he'll be at!! Best of luck!

 

[litsa]

Thank you all so much for the replies, you have all been great help!!! I agree with u sjzbell that each cf is unique! I am very confident we will do great, calling a physio first thing tomorrow morning so as to arrange private tutoring!!! Need to become an expert on pt, I realized anyway that that's the most important thing for all cfers! Will I be needing a vest??I havent been informed of anything like that! I live in Greece and here things arent so good with cf. The hospital we go is 3 hours away, the closest one that has a cf clinic! I am aware that you guys have bought your percussors from the cf clinics, but do you know of any online site that I might be able to purchase one for us? and how do you choose size??
Aleksandra, i will ask my doctor aboyt the creon and the pancreas rest u mentioned, that got me kinda curious, since we are doing really well with weight gain. On the other hand, I really dont mind them, since its only with two meals. Just had trouble remembering to carry them with me when going out, but now I am getting more organized!
Thanks again to all of you, may our children be healthy and us strong to look after them!! I am sure the treatment is on the way, its just that it is coming on a slow train...!Thank u!

 

[litsa]

Thank you all so much for the replies, you have all been great help!!! I agree with u sjzbell that each cf is unique! I am very confident we will do great, calling a physio first thing tomorrow morning so as to arrange private tutoring!!! Need to become an expert on pt, I realized anyway that that's the most important thing for all cfers! Will I be needing a vest??I havent been informed of anything like that! I live in Greece and here things arent so good with cf. The hospital we go is 3 hours away, the closest one that has a cf clinic! I am aware that you guys have bought your percussors from the cf clinics, but do you know of any online site that I might be able to purchase one for us? and how do you choose size??
Aleksandra, i will ask my doctor aboyt the creon and the pancreas rest u mentioned, that got me kinda curious, since we are doing really well with weight gain. On the other hand, I really dont mind them, since its only with two meals. Just had trouble remembering to carry them with me when going out, but now I am getting more organized!
Thanks again to all of you, may our children be healthy and us strong to look after them!! I am sure the treatment is on the way, its just that it is coming on a slow train...!Thank u!

 

[AleksandraKaczynska]

I have not been able to buy percussors here in Poland - but I don't need then - just learned to make a cup of my fingers - when Asia was small and now my hands - its not a problem - aleso don't pat hard - its not about strengh = try to do pt on somneone older and make them do it to you so you'll understand it better <img src="i/expressions/face-icon-small-happy.gif" border="0">
The vest here is very expensive even though we get some funds from the handicapped state oragnisation.
For us it was said it's not as important as doing hand pct and inhalations - and other breathing excersises nad jumping <img src="i/expressions/face-icon-small-happy.gif" border="0">
I guess it would be best to see what your doctor prefers - I know that for some kids the vest is recommended - but for us not - or not yet - so take it slowly.
Asia has no problem gaining wheit - each cf patient is unique - so take it step by step.Remeber about vacinations, keep out of reach of sick people and take it step by step as it goes. I keep a schedule on my frigde of what to do when so I remeber and also my mom - who comes over often to help me with kids. Its a good idea for us.
I always thouhg my first hospital stay would be with Asia - but it was with Zuzia - the one without cf...

 

[AleksandraKaczynska]

I have not been able to buy percussors here in Poland - but I don't need then - just learned to make a cup of my fingers - when Asia was small and now my hands - its not a problem - aleso don't pat hard - its not about strengh = try to do pt on somneone older and make them do it to you so you'll understand it better <img src="i/expressions/face-icon-small-happy.gif" border="0">
The vest here is very expensive even though we get some funds from the handicapped state oragnisation.
For us it was said it's not as important as doing hand pct and inhalations - and other breathing excersises nad jumping <img src="i/expressions/face-icon-small-happy.gif" border="0">
I guess it would be best to see what your doctor prefers - I know that for some kids the vest is recommended - but for us not - or not yet - so take it slowly.
Asia has no problem gaining wheit - each cf patient is unique - so take it step by step.Remeber about vacinations, keep out of reach of sick people and take it step by step as it goes. I keep a schedule on my frigde of what to do when so I remeber and also my mom - who comes over often to help me with kids. Its a good idea for us.
I always thouhg my first hospital stay would be with Asia - but it was with Zuzia - the one without cf...

 

[CJPsMom]

Just a side note on the vest (as my little CFer is about the same age as yours). We've been told that he wouldn't be able to use a vest until around 18 months or a little older. It has to do with being big enough to handle the vest. Our little one is 14 months and he's now just over 22 pounds.
Also, when you meet with the therapist, ask for games and other fun things to do that have the same effect as CPT. We don't want little one to have negative feelings associated with the CPT, so we do it periodically throughout the day so he doesn't have to sit still for 15 minutes at a time.
So far, he's been lung healthy...we've just had a multitude of digestive issues.

 

[CJPsMom]

Just a side note on the vest (as my little CFer is about the same age as yours). We've been told that he wouldn't be able to use a vest until around 18 months or a little older. It has to do with being big enough to handle the vest. Our little one is 14 months and he's now just over 22 pounds.
Also, when you meet with the therapist, ask for games and other fun things to do that have the same effect as CPT. We don't want little one to have negative feelings associated with the CPT, so we do it periodically throughout the day so he doesn't have to sit still for 15 minutes at a time.
So far, he's been lung healthy...we've just had a multitude of digestive issues.

 

[litsa]

Hello again and thanks for the so precious advice!!! Gotta admit things here are not so well with informing parents and the foundations on cf are way back in the middle ages! I am now trying to find out how to get the sort of pension for my baby boy,and the paper work it needs is unbelievable! I have not been told anything about the vest or the percussors, I found out about those on the internet!!! Met with physio guy today, was ok, showed me some pt to do, but will definetelly meet again with the physio on the cf clinic, going next tuesday, hope all goes well!
Thank you all for your time and keep well!

 

[litsa]

Hello again and thanks for the so precious advice!!! Gotta admit things here are not so well with informing parents and the foundations on cf are way back in the middle ages! I am now trying to find out how to get the sort of pension for my baby boy,and the paper work it needs is unbelievable! I have not been told anything about the vest or the percussors, I found out about those on the internet!!! Met with physio guy today, was ok, showed me some pt to do, but will definetelly meet again with the physio on the cf clinic, going next tuesday, hope all goes well!
Thank you all for your time and keep well!