Newborn just diagnosed and I M FREAKIN OUT
- Thread starter Dowling
- Start date
azdesertrat
New member
First of all, do you have a support system? Are your parents near you? Do you have a church to attend?
Sometimes talking to 'your' people will help.
Secondly, you need to locate the nearest CF center. Do you live close to a large city?
It's NOT the end of the world. There are great strides being made in the care of 'CF'ers'.
You need to talk with someone who has gone through what you're going through and this website is a good place to start.
There are several mothers of CF'ers that post regularly & I'm sure they will be happy to help.
Calm down girl, its not the end of the world.
I'm 48 years old. I worked all my life up until a few years ago.
There are people on this site muich older than I that have CF.
Don't worry. Just try to treat your baby like any other because that's all she is. She's just a kid that's gonna need a little more help through life.
Hang in there, if there is any way I can help just contact me.
You're in our thoughts & prayers. Take care, 'Pat'.
Sometimes talking to 'your' people will help.
Secondly, you need to locate the nearest CF center. Do you live close to a large city?
It's NOT the end of the world. There are great strides being made in the care of 'CF'ers'.
You need to talk with someone who has gone through what you're going through and this website is a good place to start.
There are several mothers of CF'ers that post regularly & I'm sure they will be happy to help.
Calm down girl, its not the end of the world.
I'm 48 years old. I worked all my life up until a few years ago.
There are people on this site muich older than I that have CF.
Don't worry. Just try to treat your baby like any other because that's all she is. She's just a kid that's gonna need a little more help through life.
Hang in there, if there is any way I can help just contact me.
You're in our thoughts & prayers. Take care, 'Pat'.
Valerie Keith
New member
Just hang in there we are going thru the same thing. Our son is 8 weeks and was diagnosed at 2weeks. This site is very helpful and the ppl r wonderful!!!
If they found two known mutations with newborn screening then a sweat test is not necessary. Did you get some information from the clinic? Are they testing to see if she is pancreatic sufficient or did they prescribe enzymes?
Did they show you how to do CPT on your little one?
I know these are more questions than answers but I guess I'm not sure how much you already know.
For us, day to day life with a child with CF consists of giving him enzymes before he eats and doing Chest Percussion Therapy (he is now old enough for a vest) along with breathing treatments.
Is there anything else you need to know? CF is manageable and you will get through this. You can also private message me if you need.
Did they show you how to do CPT on your little one?
I know these are more questions than answers but I guess I'm not sure how much you already know.
For us, day to day life with a child with CF consists of giving him enzymes before he eats and doing Chest Percussion Therapy (he is now old enough for a vest) along with breathing treatments.
Is there anything else you need to know? CF is manageable and you will get through this. You can also private message me if you need.
G
gmatt24
Guest
Dowling, Valerie, everyone... just wanted to say hello and hang in there. You're not alone. This is my first post until now I've just been reading.
My son Carter is 4 weeks old and was diagnosed at 11 days. He was very sick at birth and required to be transferred to another city for surgery for bowel obstruction (meconium ileus) a symptom of his CF. He has been in the ICU since birth and we're awaiting 2nd surgery in a couple weeks. I have gotten through by faith in God and the love of friends and family. We just can't wait to take our beautiful baby home. I'm sending prayers your way. Let's stay in touch we'll get through this!
My son Carter is 4 weeks old and was diagnosed at 11 days. He was very sick at birth and required to be transferred to another city for surgery for bowel obstruction (meconium ileus) a symptom of his CF. He has been in the ICU since birth and we're awaiting 2nd surgery in a couple weeks. I have gotten through by faith in God and the love of friends and family. We just can't wait to take our beautiful baby home. I'm sending prayers your way. Let's stay in touch we'll get through this!
CrisDopher
New member
Not quite true. CF is a diagnosis of observed phenomena, not genetic predilection. The sweat test confirms the body's systemic chloride imbalance, which leads to all our problems (and is caused by that stupid little faulty protein). Having the genetic coding for a faulty CFTR does not necessarily mean that the collection of symptoms and ailments we call CF will manifest right away - or at all. There have been cases where relatives of people with CF were found to also have two CF mutations - but they were doing just fine. In Newsweek this week, one of the short bits of medical news is that researches have figured out what all the "dark matter" of our DNA does. Genetic code that previously was thought to be junk or inactive turns out to be a vast management system, sorting and deciding which of the "worker" genes actually gets expressed or suppressed. This should result in new rounds of research into CF genetics and may help explain the vast differences in CF severity among people with even the same mutations.
So my point is: the sweat test is a gold standard because it points to an actual, present, existing systemic problem. Genetic sequences can only point to a predilection for a problem.
And to Dowling:
Your daughter will be fine - as long as you and she stay on top of her health every single day. That doesn't mean treating her like a Faberge egg or an invalid. It just means making sure that the treatments your CF-clinic doctor prescribes get done, be it nebulizers, physical therapy, exercise, or pills. Soon, it becomes routine and manageable.
How many breathing treatments ? And how many times do u do CPT? My daughter is not big enough for CPT so they will teach us that next. Is she gonna hate doing CPT and fight me? She is pancreatic insufficient so we give her table salt, adek vitamins and creon enzymes. Also, how much of a germaphobe do I need to be . I have a 4 yr old and a two year old without CF so I'm short on time as it is
cramermitch
New member
Hello,
I live in Tucson, AZ and I have a 3 year old son with CF. One thing I would advise you to do is to have your baby do the sweat test and the faecal elastase test. Although most people with CF are pancreatic insufficient, some of the them are pancreatic sufficient. The clinic told me I had to start giving my son enzymes as a newborn. As a mother I felt something was not right especially when I noticed his stools did not look normal. Finally after I insisted that he be test to see if he in fact needed the enzymes, the test revealed he did not! It was actually making my baby sicker. Not only that but he ended up in the hospital for overdosing on the liquid vitamins they also told me to give him. Since he was pancreatic sufficient the vitamins were not necessary they reached a toxic level in his system. Don't let them start medicating your baby with ANYTHING until there is clear evidence that each individual medicine is needed. I know how desperate you must be feeling because I was where you are three years ago, but you learn to deal with it and the most important thing is for you to educate yourself and become your child's advocate. Do not leave it all to the doctors because no one will take care of your child like you do. You will have to start doing CPTs for airway clearance and I would start that NOW. Especially since it is not a medication so it can't hurt your child in any way. It is up to you to have your child grow up with a positive outlook despite the fact that they have CF. Visit: http://runsickboyrun.blogspot.com/. Ronnie Sharpe is a young man with CF who is married and recently had a child of his own. He is truly an inspiration to us all this is the type of person we should all hope our children with CF become. He is not only very happy but he fully accepts that CF is simply part of his life and chooses to stay proactive to maintain. Most importantly, helps other to do the same! I have contacted him myself and it really gave me a different perspective on my child's diagnosis. He has a video on youtube about how to do CPT correctly that you should watch and he has also posted other videos there about his life. If you would like to contact me personally let me know.
I live in Tucson, AZ and I have a 3 year old son with CF. One thing I would advise you to do is to have your baby do the sweat test and the faecal elastase test. Although most people with CF are pancreatic insufficient, some of the them are pancreatic sufficient. The clinic told me I had to start giving my son enzymes as a newborn. As a mother I felt something was not right especially when I noticed his stools did not look normal. Finally after I insisted that he be test to see if he in fact needed the enzymes, the test revealed he did not! It was actually making my baby sicker. Not only that but he ended up in the hospital for overdosing on the liquid vitamins they also told me to give him. Since he was pancreatic sufficient the vitamins were not necessary they reached a toxic level in his system. Don't let them start medicating your baby with ANYTHING until there is clear evidence that each individual medicine is needed. I know how desperate you must be feeling because I was where you are three years ago, but you learn to deal with it and the most important thing is for you to educate yourself and become your child's advocate. Do not leave it all to the doctors because no one will take care of your child like you do. You will have to start doing CPTs for airway clearance and I would start that NOW. Especially since it is not a medication so it can't hurt your child in any way. It is up to you to have your child grow up with a positive outlook despite the fact that they have CF. Visit: http://runsickboyrun.blogspot.com/. Ronnie Sharpe is a young man with CF who is married and recently had a child of his own. He is truly an inspiration to us all this is the type of person we should all hope our children with CF become. He is not only very happy but he fully accepts that CF is simply part of his life and chooses to stay proactive to maintain. Most importantly, helps other to do the same! I have contacted him myself and it really gave me a different perspective on my child's diagnosis. He has a video on youtube about how to do CPT correctly that you should watch and he has also posted other videos there about his life. If you would like to contact me personally let me know.
cramermitch
New member
I was doing CPTs on my son when he was just 3 weeks old with infant breathing cups. I will tell you that starting them this young was not only the best for his health but it made a huge difference on how he views this part of his treatment. We do them twice a day, morning and night. He is so used to it like brushing his teeth and sometimes it seems like he enjoys it. When he was a baby, sometimes he would fall asleep while we did them. Now its a routine and when we tell him its time for CPTs, he runs to get a cartoon video to watch and plops on the couch so we can start. Imagine if I would had started when he was 2? This is something he know since he was an infant. There are times we get a little resistance but just like going to bed or brushing teeth, put your foot down, let them know you are the boss and they HAVE to do it. My 3 year old gives up after a few seconds of complaining. I think a little germaphobia is good. Then it just becomes part of your routine. For example, I carry lysol in the back seat of my car. I park close to the carts at the store so I can pull one up to my car, spray it with lysol and then put my son in the cart. I sanitize his and my hands often throughout the day as well and always wash our hands before we eat, etc., etc. I don't care what anyone else thinks and people don't usually care anyway if you just go about it without announcing to the world what you are doing and why.
I think a little germaphobia is good. Then it just becomes part of your routine. For example, I carry lysol in the back seat of my car. I park close to the carts at the store so I can pull one up to my car, spray it with lysol and then put my son in the cart. I sanitize his and my hands often throughout the day as well and always wash our hands before we eat, etc., etc. I don't care what anyone else thinks and people don't usually care anyway if you just go about it without announcing to the world what you are doing and why. We do CPT and breathing treatments twice a day and up it when he is sick. Your baby might not like the CPT at first but our child got used to it. Also, not sure why they would not have started CPT with her yet. Our son was under 6lbs when he left the hospital and we started CPT right away.
As far as the germ phobia goes, I came to a point where I knew I either needed to make sure to sterilize everything, make sure it was dry, etc. etc. etc. or chill the heck out and just act as if he is a normal child. I decided on the latter and am honestly so glad I did. He is 5 1/2 and doing great. I honestly think it helped him letting his body fight off the normal stuff.
As far as the germ phobia goes, I came to a point where I knew I either needed to make sure to sterilize everything, make sure it was dry, etc. etc. etc. or chill the heck out and just act as if he is a normal child. I decided on the latter and am honestly so glad I did. He is 5 1/2 and doing great. I honestly think it helped him letting his body fight off the normal stuff.
Valerie Keith
New member
gmatt24 sounds like ur going thru what we have bn thruMarshall was born 6 weeks early and his intestines were twisted, they did surgery that night. Weve had a lot to go thru and its bn up and downs he just had his 2nd surgery last wed bcuz he had a nother obstruction and took another 4 inches out and while they were at it went ahead and sew his intestines together. We just found out today as long as he keep bn able to hold his food and all he well b able to come home in two weeks
dowling im praying for ur family
dowling im praying for ur family
azdesertrat
New member
Boy, the 'Zonies are out in force!
Its funny, I'm pushing 50 years old & I go to PHX Children's Hospital to see my CF pulmonologist, a truly FINE doctor!
I'm blessed to have him on my team.
My transplant was done at UMC in Tucson. If any of you 'Zonies want to talk, get in touch with me.
I'll be happy to help anyone I can, if I can...
Its funny, I'm pushing 50 years old & I go to PHX Children's Hospital to see my CF pulmonologist, a truly FINE doctor!
I'm blessed to have him on my team.
My transplant was done at UMC in Tucson. If any of you 'Zonies want to talk, get in touch with me.
I'll be happy to help anyone I can, if I can...
Valerie Keith
New member
azdesertrar would love to how?? still learning LOL
azdesertrat
New member
Valerie, check your private messages OK? Or, my e-mail is 98peterbilt@cableone.net.
Helenlight
New member
Hi,
Our daughter with CF is 10 months old. We were already giving her physio without realising it before her diagnosis at 9 weeks old- because she liked to be 'patted' heavily to sleep! Sometimes she likes it, sometimes she'd rather play, but we just persevere and try and distract her until it's done. She has the DDF508 mutation and pancreatic insufficient. She got a viral infection at 5 weeks old and has basically been intermittently coughing and wheezing ever since.
I have stayed in the hospital with her on 3 occasions now, the first time for 5 days, the second was for 5 weeks (she was 5 months old) and the third time we are nearly at 3 weeks, and still here- but we should be going home soon.
I questioned everything in the beginning, all the meds and treatments and the approach, but after a while I have come to know the staff and the medications and know better who and what to trust and what approach works best for her. She has allergies too, so I have to be knowledgeable about how they affect her wheeze and digestion because many of the respiratory doctors don't seem to know that much about that side of things. It's a steep learning curve!
I remember it all being very difficult and stressful in the beginning, but you do get the hang of it all. I think that babies and children are much more resilient than we realise.
As for the germ thing- I felt very in the dark about what the best approach was. Our CF specialist paediatrician said that general cleaning is sufficient, that the kind of bacteria that cause problems can be found anywhere and it is impossible to eliminate them all. Pseudomonas can be found on clean/sanitised hospital surfaces, and I wonder if in trying to always get rid of them we actually encourage the re-growth of more persistent strains. As you would know- babies go through a phase of putting everything in their mouths and you would go crazy trying to prevent this from happening. Their stomachs can cope with just about anything, so worry less about that (and it is good for their immune system to 'taste' everything). If you want to be careful, it's more about what they breath in, and it is my understanding that there is heavier bacteria growth in things like stagnant water, compost and piles of lawn clippings, and dirt. The other thing to be careful of is respiratory infection so it's important to try and avoid people with coughs and colds- train your friends early on this one to keep away if they are ill!
The kids need to have a life, so eventually you will find a balance between being careful and still having fun.
Our daughter with CF is 10 months old. We were already giving her physio without realising it before her diagnosis at 9 weeks old- because she liked to be 'patted' heavily to sleep! Sometimes she likes it, sometimes she'd rather play, but we just persevere and try and distract her until it's done. She has the DDF508 mutation and pancreatic insufficient. She got a viral infection at 5 weeks old and has basically been intermittently coughing and wheezing ever since.
I have stayed in the hospital with her on 3 occasions now, the first time for 5 days, the second was for 5 weeks (she was 5 months old) and the third time we are nearly at 3 weeks, and still here- but we should be going home soon.
I questioned everything in the beginning, all the meds and treatments and the approach, but after a while I have come to know the staff and the medications and know better who and what to trust and what approach works best for her. She has allergies too, so I have to be knowledgeable about how they affect her wheeze and digestion because many of the respiratory doctors don't seem to know that much about that side of things. It's a steep learning curve!
I remember it all being very difficult and stressful in the beginning, but you do get the hang of it all. I think that babies and children are much more resilient than we realise.
As for the germ thing- I felt very in the dark about what the best approach was. Our CF specialist paediatrician said that general cleaning is sufficient, that the kind of bacteria that cause problems can be found anywhere and it is impossible to eliminate them all. Pseudomonas can be found on clean/sanitised hospital surfaces, and I wonder if in trying to always get rid of them we actually encourage the re-growth of more persistent strains. As you would know- babies go through a phase of putting everything in their mouths and you would go crazy trying to prevent this from happening. Their stomachs can cope with just about anything, so worry less about that (and it is good for their immune system to 'taste' everything). If you want to be careful, it's more about what they breath in, and it is my understanding that there is heavier bacteria growth in things like stagnant water, compost and piles of lawn clippings, and dirt. The other thing to be careful of is respiratory infection so it's important to try and avoid people with coughs and colds- train your friends early on this one to keep away if they are ill!
The kids need to have a life, so eventually you will find a balance between being careful and still having fun.
DS is 9 years old and was diagnosed when he was about 6 days old. He was born with a bowel obstruction. While he was recovering from surgery we learned how to give him CPT, nebulizer treatments, enzymes, medications.... We started doing cpt and neb treatments 4 times a day while I was home on maternity leave. We dropped down to 3 when I went back to work full time. We increase treatments if he gets a cough or cold.
Basically we were overwhelmed at first, but took it one step at at time. Pretty soon we got into a routine. Just remember your child is a NORMAL kid who just needs a few extra things to stay happy and healthy. DS goes to public school and daycare. He's active in gymnastics has taken skating and tennis lessons as well. We go to a clinic in the City about 3 1/2 hours drive away and we have a local pediatrician who's familiar wcf.
Basically we were overwhelmed at first, but took it one step at at time. Pretty soon we got into a routine. Just remember your child is a NORMAL kid who just needs a few extra things to stay happy and healthy. DS goes to public school and daycare. He's active in gymnastics has taken skating and tennis lessons as well. We go to a clinic in the City about 3 1/2 hours drive away and we have a local pediatrician who's familiar wcf.