Newborn with CF - First steps

[natureimpulse]

Our newborn baby was diagnosed with CF and from a week my family is in nighmare, from which we can't wake up.
Now the child is in the 5 week, feeling grate, without any sympthoms like the only thing is bothering me is the weight which is with 100gr less than doctor`s charts.
Our consultants suggest us to start treatment with Flucloxacillin and Creon gastro-resistant granules .
Please I am looking for advice. It's that normal to treat the child with antibiothic (e.g. Flucloxacilin) in a way we don't find any sick sympthoms?
What we must do first in a way our child is just 5 weeks old?

 

[natureimpulse]

Our newborn baby was diagnosed with CF and from a week my family is in nighmare, from which we can't wake up.
Now the child is in the 5 week, feeling grate, without any sympthoms like the only thing is bothering me is the weight which is with 100gr less than doctor`s charts.
Our consultants suggest us to start treatment with Flucloxacillin and Creon gastro-resistant granules .
Please I am looking for advice. It's that normal to treat the child with antibiothic (e.g. Flucloxacilin) in a way we don't find any sick sympthoms?
What we must do first in a way our child is just 5 weeks old?

 

[Ratatosk]

Our child was diagnosed shortly after he was born and we went thru similar emotions. We went thru a grieving process -- all the stages of emotion -- denial, anger...

I know it's confusing being there aren't any symptoms. It's important to be proactive in order to keep your child's lungs healthy, so chest physiotherapy to clear mucus. Enzymes or creon to help your child digest fat in order to grow. Our child was also on an antibiotic as a precaution.

We pretty much just got into a routine --- CPT with nebulizer treatments, medications, appointments. Today our son is an active 8 year old. Goes to school, is in activities, has friends... We've gone on vacations. Just have to do a few extra things to keep him healthy and happy.

 

[Ratatosk]

Our child was diagnosed shortly after he was born and we went thru similar emotions. We went thru a grieving process -- all the stages of emotion -- denial, anger...

I know it's confusing being there aren't any symptoms. It's important to be proactive in order to keep your child's lungs healthy, so chest physiotherapy to clear mucus. Enzymes or creon to help your child digest fat in order to grow. Our child was also on an antibiotic as a precaution.

We pretty much just got into a routine --- CPT with nebulizer treatments, medications, appointments. Today our son is an active 8 year old. Goes to school, is in activities, has friends... We've gone on vacations. Just have to do a few extra things to keep him healthy and happy.

 

[Julie7]

If your child is pancreatic insufficient, therefore requiring the Creon in order to digest food and grow as Ratatosk says, going without the enzymes will be painful to your child. I only recently found out my 8 year old is pancreatic insufficient. He has been complaining of stomach aches for some time now, but as a mom of three, I thought it was sometimes real and sometimes a way to get out of what we fixed for dinner. Well, now to know that he is pancreatic insufficient, eating food was causing him pain because his body could not digest the food.
I am just telling you this as a mom, because I feel absolutely horrible for dismissing his stomach pain before we found out what the problem was. Think of it is this way, you are helping your baby feel better by providing the enzymes so he/she can eat without pain. Especially since your baby cannot verbalize words yet, this could cause pain that might come out in crying, etc. The more proactive you are with CF, the more likely you are impacting his/her long term health for the best. By doing these treatments, getting into the routines, you will be extending your child's lifetime and the quality of life as well.
I wish you the best. The people on these boards are great and can offer a lot of great advice.

 

[Julie7]

If your child is pancreatic insufficient, therefore requiring the Creon in order to digest food and grow as Ratatosk says, going without the enzymes will be painful to your child. I only recently found out my 8 year old is pancreatic insufficient. He has been complaining of stomach aches for some time now, but as a mom of three, I thought it was sometimes real and sometimes a way to get out of what we fixed for dinner. Well, now to know that he is pancreatic insufficient, eating food was causing him pain because his body could not digest the food.
I am just telling you this as a mom, because I feel absolutely horrible for dismissing his stomach pain before we found out what the problem was. Think of it is this way, you are helping your baby feel better by providing the enzymes so he/she can eat without pain. Especially since your baby cannot verbalize words yet, this could cause pain that might come out in crying, etc. The more proactive you are with CF, the more likely you are impacting his/her long term health for the best. By doing these treatments, getting into the routines, you will be extending your child's lifetime and the quality of life as well.
I wish you the best. The people on these boards are great and can offer a lot of great advice.

 

[Kaethe108]

Hi natureimpulse!

I know how you feel, we went through the Same when our daughter was diagnosed six months Old.
you are in a nightmare now, but it will get better! you will find Out that your Baby has a beautiful live in Front!
the medicines that get On the market right now are amazing and i really have NO DOUBT that our children will have a normal and healthy Life!

if your Baby is pancreas insufficient, then the First Thing to Start is the creon. I Assume you are Treated in a CF Center? there, the nutritionists will help you to Figure Out the right Dosis. this is Important to let your Baby get everything digested and let it Grow and gain Weight. if you Need Tipps how to get the creon into the Child, please Write again. we went through all of them...
we then Started with giving Vitamins (Check Aquadeks!) and learned how to inhale and do physiotherapy. we inhale twice a day. at first it sounds like you can never make it, but you get so used to it quickly!
we never took antibiotic as prophylaxis. her lungs get checked every four to six weeks and only if there is an infection we get antibiotic, which was the case only once so far.

our daughter is now 10 months old and she is developing great! Shining, laughing, crawling, having a little baby fat...
your baby has a great future in front of it, you will just have to do a little bit more for it.

 

[Kaethe108]

Hi natureimpulse!

I know how you feel, we went through the Same when our daughter was diagnosed six months Old.
you are in a nightmare now, but it will get better! you will find Out that your Baby has a beautiful live in Front!
the medicines that get On the market right now are amazing and i really have NO DOUBT that our children will have a normal and healthy Life!

if your Baby is pancreas insufficient, then the First Thing to Start is the creon. I Assume you are Treated in a CF Center? there, the nutritionists will help you to Figure Out the right Dosis. this is Important to let your Baby get everything digested and let it Grow and gain Weight. if you Need Tipps how to get the creon into the Child, please Write again. we went through all of them...
we then Started with giving Vitamins (Check Aquadeks!) and learned how to inhale and do physiotherapy. we inhale twice a day. at first it sounds like you can never make it, but you get so used to it quickly!
we never took antibiotic as prophylaxis. her lungs get checked every four to six weeks and only if there is an infection we get antibiotic, which was the case only once so far.

our daughter is now 10 months old and she is developing great! Shining, laughing, crawling, having a little baby fat...
your baby has a great future in front of it, you will just have to do a little bit more for it.

 

[imported_Momto2]

Totally agree with starting the digestive enzymes YESTERDAY. I have never been in favor of preventative antibiotics in such a young child with no signs of infection. If you are questioning it, get a second opinion. I would strongly suggest educating yourself on CF-specific inhaled medications and find out when your child can start on them. ie hypertonic saline, pulmozyme, etc. Definitely take your child to an approved CF center. Most general docs are 10-20 years out of date when it comes to CF care. And finally **hugs** you'll get through this!

 

[imported_Momto2]

Totally agree with starting the digestive enzymes YESTERDAY. I have never been in favor of preventative antibiotics in such a young child with no signs of infection. If you are questioning it, get a second opinion. I would strongly suggest educating yourself on CF-specific inhaled medications and find out when your child can start on them. ie hypertonic saline, pulmozyme, etc. Definitely take your child to an approved CF center. Most general docs are 10-20 years out of date when it comes to CF care. And finally **hugs** you'll get through this!

 

[riehlism]

Kaethe108, I would love some advice on giving a little one Creon. My son is 7 months, and just started solid food. Now he has a solid food aversion because we tried giving him the creon in his food.

Also, how do I found out about approved CF Centers? My son is typically seen at UCLA, so I am assuming they are approved.

 

[riehlism]

Kaethe108, I would love some advice on giving a little one Creon. My son is 7 months, and just started solid food. Now he has a solid food aversion because we tried giving him the creon in his food.

Also, how do I found out about approved CF Centers? My son is typically seen at UCLA, so I am assuming they are approved.

 

[Printer]

Make sure that your child is in, or being seen at, an APPROVED CF CENTER by an CF SPECIALIST. Once that is done, get out of the way and let the CF TEAM do their job.

Your childs quality and length of life is in the balance.

Bill

 

[Printer]

Make sure that your child is in, or being seen at, an APPROVED CF CENTER by an CF SPECIALIST. Once that is done, get out of the way and let the CF TEAM do their job.

Your childs quality and length of life is in the balance.

Bill

 

[Printer]

riehlism:

At the top right of this page you will find "FIND A CF CENTER". Click on that then click on Cali on the map

Bill

 

[Printer]

riehlism:

At the top right of this page you will find "FIND A CF CENTER". Click on that then click on Cali on the map

Bill

 

[TestifyToLove]

I completey disagree with the concept of simply getting out of the way of the docots in treating a child's CF condition. That might hav been status quo decades ago with any medical conditions. However, as parents today, we learn that we need to be proactive, educated and partner with our children's doctors in deciding their care.

Digestive Enzymes are absolutely necessary for a child who is pancreatic insufficient. Basically, he is not releasing the digestive juices that permit his body to break down and absorb the nutrients in his food. It's one of the most common problems for CFers and the reason that they used to die by age six until the 60s and 70s. As much as this step can be mentally tough, the reality is that any child who cannot digest their food need to have those enzymes replaced so that they can start to digest their food, regardless of their age.

As for the antibiotics, there are a lot of schools of thoght on this one. I have had CF doctors who want to go to anbiotics first and aggressively and those who will hold off for much longer periods of time before doing so. If you don't feel right about this, then talk to your doctors and find out why they want to use the antibiotics. It may be that when they take the time to explain their reasoning to you, you will feel better. If you still don't feel at peace, then do some research and dialog with the doctors. You have a right to expect the doctors to explain what they are doing to you, and you have a right to have an opinion on what is going on. No one here can tell you what the exact right answer is. There are times that I decline antibiotics because I'm very certain that we're dealing with something viral and the antibiotics aren't the answer. There are times that I talk to his doctors and see there reasoning even if I wasn't there before talking to them.

This is a very overwhelming life, but you will learn and adapt. You will reach a point where you feel like you can claim your child as yours and not merely the patient of the doctors. It gets better than where you are today. It just takes time and persistence to learn how to navigate this strange new world.

 

[TestifyToLove]

I completey disagree with the concept of simply getting out of the way of the docots in treating a child's CF condition. That might hav been status quo decades ago with any medical conditions. However, as parents today, we learn that we need to be proactive, educated and partner with our children's doctors in deciding their care.

Digestive Enzymes are absolutely necessary for a child who is pancreatic insufficient. Basically, he is not releasing the digestive juices that permit his body to break down and absorb the nutrients in his food. It's one of the most common problems for CFers and the reason that they used to die by age six until the 60s and 70s. As much as this step can be mentally tough, the reality is that any child who cannot digest their food need to have those enzymes replaced so that they can start to digest their food, regardless of their age.

As for the antibiotics, there are a lot of schools of thoght on this one. I have had CF doctors who want to go to anbiotics first and aggressively and those who will hold off for much longer periods of time before doing so. If you don't feel right about this, then talk to your doctors and find out why they want to use the antibiotics. It may be that when they take the time to explain their reasoning to you, you will feel better. If you still don't feel at peace, then do some research and dialog with the doctors. You have a right to expect the doctors to explain what they are doing to you, and you have a right to have an opinion on what is going on. No one here can tell you what the exact right answer is. There are times that I decline antibiotics because I'm very certain that we're dealing with something viral and the antibiotics aren't the answer. There are times that I talk to his doctors and see there reasoning even if I wasn't there before talking to them.

This is a very overwhelming life, but you will learn and adapt. You will reach a point where you feel like you can claim your child as yours and not merely the patient of the doctors. It gets better than where you are today. It just takes time and persistence to learn how to navigate this strange new world.

 

[Ratatosk]

Jasmin,

DS had some aversion/texture issues as well. We continued to give him formula as his primary source of nutrition and pretty much stuck with the foods we knew he'd eat -- Jarred baby food stage 2 mac & cheese, oatmeal with pears, turkey & ham -- whole milk/greek yogurt, finely ground up chicken & dumplings, bean soup... He hated toast, ground meat... Eventually he started to eat more things, although he was on formula until he was 18 months old. At daycare he'd drink whole milk and they'd finely grind up whatever the big kids were eating -- fish sticks, casserole, stew... but at home it was easier to stick with what we knew he'd eat.

 

[Ratatosk]

Jasmin,

DS had some aversion/texture issues as well. We continued to give him formula as his primary source of nutrition and pretty much stuck with the foods we knew he'd eat -- Jarred baby food stage 2 mac & cheese, oatmeal with pears, turkey & ham -- whole milk/greek yogurt, finely ground up chicken & dumplings, bean soup... He hated toast, ground meat... Eventually he started to eat more things, although he was on formula until he was 18 months old. At daycare he'd drink whole milk and they'd finely grind up whatever the big kids were eating -- fish sticks, casserole, stew... but at home it was easier to stick with what we knew he'd eat.