I believe today is the first day since May 18, 2012 that I have not cried. Our then 3 week oldbaby girl was diagnosed with CF through genetic testing after having two IRT counts of 296+ng/ml on her newborn screening. She has2 mutations- delta F508. We have seen her CF team twice now and have already scheduled visits, at least once a month for the next year, as long as she stays healthy. She has started on the enzymes and vitamins, which I give her faithfully, and the next visit will be the begining of her breathing treatments. At our next visit, which will be in 1 week , our 2 oldest daughters will also go through genetic testing. For those of you who had newborns diagnosed, what do you wish you would have asked the doctors and/or what do you wish you would have known or done. Also, I know each individual is different and that there are so many mutations, but are any depletions more symptamatic than others? Thank You -
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
What do you wish you would have known?
- Thread starter palmera
- Start date
I was in your position one year ago. Our newborn son was diagnosed when he was 12-days-old... June 28, 2011. For us, our biggest problems have been with his digestive system and weight gain so far.
So, if I had known, I would have pushed for a stronger laxative to keep him more regular (since every time he gets blocked he stops eating, and we even had a hospitalization for it that I still think could have been avoided if I had known more.)
Also, if weight gain is a problem, I would have pushed for possible solutions harder and sooner. It took them months to tell us about different things we could give him, and we're at the point now where all of it's probably too late and he'll have to get a g-tube. So, if weight gain is an issue, ask about duocal, ask about MCT oil, earlier rather than later.
And, if your team doesn't seem aggressive enough, push for them to be as aggressive as they can be. Push to get onto pulmozyme earlier rather than later (it's a nebulized medication that is supposed to affect the DNA of the mucos in the lungs), push for doing the Chest Physical Therapy.
Also, do your research. Ask questions here, and there are other sites where you can ask questions. Ask your social worker if there are any parents' groups you can be a part of since those might help, too. If you want more details, feel free to PM me.
Erin
So, if I had known, I would have pushed for a stronger laxative to keep him more regular (since every time he gets blocked he stops eating, and we even had a hospitalization for it that I still think could have been avoided if I had known more.)
Also, if weight gain is a problem, I would have pushed for possible solutions harder and sooner. It took them months to tell us about different things we could give him, and we're at the point now where all of it's probably too late and he'll have to get a g-tube. So, if weight gain is an issue, ask about duocal, ask about MCT oil, earlier rather than later.
And, if your team doesn't seem aggressive enough, push for them to be as aggressive as they can be. Push to get onto pulmozyme earlier rather than later (it's a nebulized medication that is supposed to affect the DNA of the mucos in the lungs), push for doing the Chest Physical Therapy.
Also, do your research. Ask questions here, and there are other sites where you can ask questions. Ask your social worker if there are any parents' groups you can be a part of since those might help, too. If you want more details, feel free to PM me.
Erin
S
sanfloraine
Guest
Erin: my son has not been diagnosed with CF but he is CRMS and is PI, on enzymes. He is 25 months old and he used to have 1 blowout a day because of constipation. We started him on Align (a probiotic) and he now poops 3 times a day, it has really made a difference. For me as well, I also take it everyday (it was suggested to me initially for constipation problems). He takes half a pill per day, it's expensive but very helpful and prevents the use of harsh laxatives.
DS was diagnosed shortly after he was born. We started enzymes, vitamins and chest physiotherapy (CPT) and nebulizer treatments right away. I too would get teary and cry, worry about the future, overwhelmed about everything. One thing I WISH I'd have done was NOT WORRY so much and just TRY to enjoy normal baby milestones. DS spit up, was a very fussy eater, so that added to our stress.
Little by little it does get easier, you get into a routine.
Somethings that do get a little confusing is how soon to give enzymes again after feedings, when to increase enzymes. We were told it was based on input and output -- what his stools looked like. Until DS was much older he NEVER had a normal looking poop. I'd ask what normal stools were supposed to look like and I'd get this mysterious "oh, you'll know".
Another thing we needed to learn was about coughs. Is it reflux, habit, post nasal drip, bronchial. DS' baseline is no cough. When he was 2 months old he devloped a bronchial, productive cough. The pediatrician heard it and told us "it's what they -- cfers do -- they cough". Got to the CF clinic a few weeks later and found out he had bronchitis.
If you have any questions, just ask. Most of us parents have been where you're at now.
Little by little it does get easier, you get into a routine.
Somethings that do get a little confusing is how soon to give enzymes again after feedings, when to increase enzymes. We were told it was based on input and output -- what his stools looked like. Until DS was much older he NEVER had a normal looking poop. I'd ask what normal stools were supposed to look like and I'd get this mysterious "oh, you'll know".
Another thing we needed to learn was about coughs. Is it reflux, habit, post nasal drip, bronchial. DS' baseline is no cough. When he was 2 months old he devloped a bronchial, productive cough. The pediatrician heard it and told us "it's what they -- cfers do -- they cough". Got to the CF clinic a few weeks later and found out he had bronchitis.
If you have any questions, just ask. Most of us parents have been where you're at now.
2 things come to mind that would have made a big difference in my life.
1) Never stop exercising. I was dx at 7 yrs. so my case is different but exercise and diet are absolutely life or4 death for CFrs. I lived a fairly normal life until at 37 I started as an over-the-road truck driver and quit getting any regular exercise. That was without a doubt the worst thing I ever did. I still drive truck but I get as much exercise as I can and hope that I may get some lung function back. The sad truth at least for those of us that have already lost lung function is that any big changes are pretty unlikely if not impossible. The good news for your baby is that life is just beginning and the future is much more hopeful than the past has been. But please teach yuor child from the very first that on the days that you feel the worst exercise does you the most good.
2)Don't automatically take the word of every Dr. as gospel. CF Drs. especially tend to have an arogance that they think they know more about your child than you do. The fact is that more so than any other disease I know of CF is very different from one person to another. We all have similarities but vastly deifferent degrees of different simptoms. Never give Drs. carte blanche to do whatever they want. Make them explain and justify everything they want to do. If you don't understand then make them explain again. If they aren't willing to do that then go somewhere else. There is so much info available now that if you are willing to put in the time you can make informed decisions.
1) Never stop exercising. I was dx at 7 yrs. so my case is different but exercise and diet are absolutely life or4 death for CFrs. I lived a fairly normal life until at 37 I started as an over-the-road truck driver and quit getting any regular exercise. That was without a doubt the worst thing I ever did. I still drive truck but I get as much exercise as I can and hope that I may get some lung function back. The sad truth at least for those of us that have already lost lung function is that any big changes are pretty unlikely if not impossible. The good news for your baby is that life is just beginning and the future is much more hopeful than the past has been. But please teach yuor child from the very first that on the days that you feel the worst exercise does you the most good.
2)Don't automatically take the word of every Dr. as gospel. CF Drs. especially tend to have an arogance that they think they know more about your child than you do. The fact is that more so than any other disease I know of CF is very different from one person to another. We all have similarities but vastly deifferent degrees of different simptoms. Never give Drs. carte blanche to do whatever they want. Make them explain and justify everything they want to do. If you don't understand then make them explain again. If they aren't willing to do that then go somewhere else. There is so much info available now that if you are willing to put in the time you can make informed decisions.
I was diagnosed at 5 months old. When I was diagnosed, my Mom and Grandmother began juicing for me 6x a day. The scar tissue in my lungs began to dissapear and the Dr.'s were amazed! Juice! Carrots, parsley, cucumbers, celery, whatever you can! I believe it has made a huge difference for me.
Samantha 32 w/CF
Samantha 32 w/CF
Helenlight
New member
Hi Palmera,
Our daughter is 7 months old now (she is also DDF508) so we have recently been through what you are going through now. What do I wish I would have known? It helps to know that it does get easier. You find out about yourself that you have unlimited strength! Having this diagnosis means you come to value the most important things, you never take your child for granted, and you develop the most beautiful bond.
I now realise how important it is to really enjoy your life together aside from all the CF stuff (hard in the beginning I know!). At times it has felt like I'm looking after a child that belongs to the medical system (we've had 2 hospital stays for exacerbations so far).
Information the medical professionals haven't given us is simple things like keeping your baby nice and warm at all times to help ward off respiratory infection (doesn't always prevent, but does help). Breast feeding for as long as possible (if you can) provides excellent nutrition, good fats, and good bacteria to repopulate the gut when baby is on antibiotics. Our hospital was blown away by how much weight our baby gained on breast milk alone once her lung infection was under control and salt levels adequate. No bowel probs at all.
I really think everyone (parents and PWCF) seem to have a different approach, and you will find yours. Careful research will help you keep up with all the new information your team will be talking about. I also try to ask the doctors lots of questions to really get my head around everything, and to get good facts (thankfully our CF doctor is excellent and always answers clearly with good information).
I don't think there is any real way to know how your journey will play out, even with the same CF genes symptoms can vary widely. The rest of our genes are so incredibly complex that the condition plays out differently for everyone.
There are lots of people here with good tips, so keep coming back when you need to. Feel free to PM me if you'd like to be in touch. Where are you from?
Enjoy your baby!
xx
Our daughter is 7 months old now (she is also DDF508) so we have recently been through what you are going through now. What do I wish I would have known? It helps to know that it does get easier. You find out about yourself that you have unlimited strength! Having this diagnosis means you come to value the most important things, you never take your child for granted, and you develop the most beautiful bond.
I now realise how important it is to really enjoy your life together aside from all the CF stuff (hard in the beginning I know!). At times it has felt like I'm looking after a child that belongs to the medical system (we've had 2 hospital stays for exacerbations so far).
Information the medical professionals haven't given us is simple things like keeping your baby nice and warm at all times to help ward off respiratory infection (doesn't always prevent, but does help). Breast feeding for as long as possible (if you can) provides excellent nutrition, good fats, and good bacteria to repopulate the gut when baby is on antibiotics. Our hospital was blown away by how much weight our baby gained on breast milk alone once her lung infection was under control and salt levels adequate. No bowel probs at all.
I really think everyone (parents and PWCF) seem to have a different approach, and you will find yours. Careful research will help you keep up with all the new information your team will be talking about. I also try to ask the doctors lots of questions to really get my head around everything, and to get good facts (thankfully our CF doctor is excellent and always answers clearly with good information).
I don't think there is any real way to know how your journey will play out, even with the same CF genes symptoms can vary widely. The rest of our genes are so incredibly complex that the condition plays out differently for everyone.
There are lots of people here with good tips, so keep coming back when you need to. Feel free to PM me if you'd like to be in touch. Where are you from?
Enjoy your baby!
xx
LittleLab4CF
Super Moderator
I am not a parent. My diagnosis was at 53 in 2003. The two paths, one of early diagnosis and no diagnosis or very late diagnosis have take aways, both involving CF diagnosis. Not knowing how sick I really am allowed me to live without a label saying I am sick. Of course I was sick and rode the ever invasive merry go round ultimately forming a team of specialists. At the end of each diagnostic rotation of the merry go round was the requisite visits with a psychiatrist since my overwhelming symptom was pain. Once diagnosed, doctors frustrated as me, suddenly had a label and though treatment changed little, insurance and my doctors stopped looking askance, and treatment flowed with little complaint. Not knowing probably took away a crutch, but I am a generally happy person, I finagled my education and carriers that I ate, drank, lived, loved and breathed. Nobody, starting with my loving parents, gave me any quarter. I have had a great life. A lot of damage ranging from 50 years of malnutrition, non treatment or wrong treatment of pulminary issues have left my lungs radio opaque and my bones not.
I can only imagine my parents' horror if they had performed a sweat test as an infant. I probably would have picked up on my many medical issues collectively as CF. I know it would be so hard just knowing how hard it would have impacted my parents. Then again, my parents dealt with my medical problems deftly and knowing or not probably wouldn't have altered how I was raised.
The one thing available to you now is Genetic Counseling. Helenlight points out CF isn't pea plant genetics. Learn what you can in order to cut to the meat of all we don't know about CF. Chances are your CF specialist is a pulmonologist and many can't properly explain a CF genetic analysis beyond Mendelian genetics. Which a genetic counselor should point out how to interpret your childrens' genetic results. For so many parents, genetic counseling early on will enable you to manage your childrens' presentation of CF. Anything short of a bonafied genetic counselor either specializing or including CF is cheating. I have a doctorate in genetics and have done CF research and I wouldn't know where to begin explaining CF to a parent or patient. It takes a more rounded education than I could offer.
I can only imagine my parents' horror if they had performed a sweat test as an infant. I probably would have picked up on my many medical issues collectively as CF. I know it would be so hard just knowing how hard it would have impacted my parents. Then again, my parents dealt with my medical problems deftly and knowing or not probably wouldn't have altered how I was raised.
The one thing available to you now is Genetic Counseling. Helenlight points out CF isn't pea plant genetics. Learn what you can in order to cut to the meat of all we don't know about CF. Chances are your CF specialist is a pulmonologist and many can't properly explain a CF genetic analysis beyond Mendelian genetics. Which a genetic counselor should point out how to interpret your childrens' genetic results. For so many parents, genetic counseling early on will enable you to manage your childrens' presentation of CF. Anything short of a bonafied genetic counselor either specializing or including CF is cheating. I have a doctorate in genetics and have done CF research and I wouldn't know where to begin explaining CF to a parent or patient. It takes a more rounded education than I could offer.
Thank you so much to all that have replied. I have read all your posts multiple times and will try to respond to the questions that I have read up above and from PMs in this reply. We live near Joplin, Missouri and so we travel two hours to Children's Mercy Hospital in KC, Mo. They are the closest CF accredited center and so far I have been very pleased. I do feel at times that they are very excited because, for lack of bettter phrasing, they have new blood and a new patient that they get to treat. My husband and I both have higher education in the fields of science and science education. My background is in chemistry and my husband's is in pathophysiology/kinesology. My scientific background is what has been therapeutic as I try to deal and educate myself; however, it is the mother side of me that is having the most difficult time. We will be going to KC again within the week to do genetic testing on our 2 older daughters, and will finally do the sweat chloride on our newborn ( we had gotten our confirmation on our newborn through genteic testing because she was too tiny a month ago to perform the sweat chloride test - she was born 3 weeks early). After spending time looking at the symptoms individuals had posted about their toddlers diagnosed with CF....I recognize so many of the symptoms in my oldest who is now 7. My oldest did have a newborn test for CF and nothing ever showed up, is it possible that she could still have CF even if her IRT levels were normal at birth? I have done a lot of recent investigation on CF induced diabetes and the antibiotics that have been mentioned up above. I truly beleive in trying to breast feed as long as I can, not only for the nurishment, but because it is easier for my little girl to digest. I have, however, been so stressed that I am having difficulty keeping up so I am trying to do all I can ( working with my OBGYN) to try to keep milk production up. I will say that before my daughter was put on enzymes, she was gaining weight just fine on breast milk and her doctors at this time have not 'made' me switch to formula. The mother side - my daughter seems absolutley perfect, and I often wonder if by introducing her system to all the steroids, antibiotics, etc. if we will not be making her exhibit the symptoms sooner than later in return weekening her little body. But the scientific side - knows that just because she may not be exhibiting symptoms now, it is a slow progressive disease and we need to be proactive. I will probably post a new question today, but I will leave it here first. I am a teacher and we do not have a great policy in regards to sick days related to immediate family. Our catastrophic plan only handles the employee not the employees immediate family. I am really worried about all the possible hopitalizations that we may face. I really need to keep my job 1) need the money and 2) I am a really good teacher and love what I do, but BOTTOM LINE: How many mothers ended up quiting their jobs to stay home with their child and if you are able to work what has been the most difficult aspect for you- working while having a child with CF? Sorry for such a long reply - but I do feel this forum will be a safe haven when I need to 'talk'. Thank you for 'listening' .
Breastmilk is more easy to digest. I'd opted not to do so. Some people BF and supplement with formula to get extra calories. DS hated pregestimil, the predigested formula for cf, so we opted for a regular formula with extra calories.
I had similar worries about DS being sick and having to quit. Both DH and I have fairly good jobs, at some point ds would be going to public school. We thought long and hard about child care. I went back to work after 12 weeks maternity leave. We figured we'd rethink things if there were issues. While DS had a couple ear and sinus infections, he was probably one of the healthiest children in his daycare.
It's so easy to get overwhelmed by all the what ifs. One piece of advice I was given was to set aside 15 minutes a day to let myself worry, freak out and then move on. Just took things one step at a time and got into a routine.
I had similar worries about DS being sick and having to quit. Both DH and I have fairly good jobs, at some point ds would be going to public school. We thought long and hard about child care. I went back to work after 12 weeks maternity leave. We figured we'd rethink things if there were issues. While DS had a couple ear and sinus infections, he was probably one of the healthiest children in his daycare.
It's so easy to get overwhelmed by all the what ifs. One piece of advice I was given was to set aside 15 minutes a day to let myself worry, freak out and then move on. Just took things one step at a time and got into a routine.
S
sanfloraine
Guest
Palmera: my son has not been diagnosed with CF but he has the same pancreas problem, he is PI on enzymes. I breastfed him for 13 months (8 first weeks with almost only breast milk then partially), his poops were perfect. A couple of weeks after I stopped breastfeeding the awful stinky/fat/floating diarrhea started which finally led to the diagnosis of being PI 6 months later.
So yes breast milk was making things more easy to digest for him, he used to eat everything with no poop problems. Now he is on a lean fat diet, because even with enzymes he cannot eat anymore fatty things like hamburger/fries. If you can keep up with your milk production, do it! And if you can do it only partially, do it as well!
So yes breast milk was making things more easy to digest for him, he used to eat everything with no poop problems. Now he is on a lean fat diet, because even with enzymes he cannot eat anymore fatty things like hamburger/fries. If you can keep up with your milk production, do it! And if you can do it only partially, do it as well!
Aboveallislove
Super Moderator
What I Wish I Knew:
1) Buy a bulk supply of syringes (I get online at Allegro) for vitamins and other oral meds so you don't waste your times and hands washing. I also get blue disposable pads that I use when doing pooper changes b/c GI issues leave many explosive, dripping diapers and it saves on constantly washing the changing bad cover.
2) Ask for extra "samples" of nebulizer cups/masks - not sure if they still give - so you have a few extra sets.
3) Start Pulmoyzme 1 month after you start the breathing treatments. Would suggest to do immediately but think it is actually good to have a month of getting nebulizing under the belt and percussions. And ask to start hypertonic saline around 18 months.
4) Start vest asap. I want to say we started at 6 months but definitely by 9. Young enough that they don't fear or fight it and now second nature.
5) Buy a food storage round tall tube (small) to use to set clean cups in - need two for xopenex and pulmzyme - so both there and you can use hold and not have to get up and also put in empty vials.
6) If albuteral is harsh/makes baby shakey ask to get Xopenex instead.
7) Don't think a hot steam shower will help open lungs/clear congestion - bad bacteria live in shower.
8) For enzymes, don't open and split - pour entire cap into what you use to give it (applesauce) and then just use another spoon to scoop out half. You don't need to "count" beeds. When a tad older switch to prunes for delivery mechanism because then you can increase prunes with meds if/when constipation starts.
9) Take constipation serious and insist you get on Miralax and/or see a GI if you are having problems. We also had a DIOS (diagnosis not definite) hospitalization that I'm convinced could have been avoided if we had been more proactive.
10) Do not push food or the move to solids. Read "Child of Mine" by Ellyn Satter. I was so desperate for weight I pushed and put dear son off food and the feeding tube discussion until an OT recommended the book.
11) For coping, I read everything I can. I search pubmed.com for cystic fibrosis regularly and b/c I'm an academic I can access a lot of the articles so read the ones of interest. I listen to all the Vertex conference calls and read the message board on yahoo.com for Vertex. If you search for 809, 661 or Kalydeco you'll find some really good info. I see a few other Cfers actually post there and then some doctors and scientists do as well.
12) An exersaucer when a little older was so key b/c ds has horrible acid reflux, so he could stay upright after a meal and I could have a break.
13) When your little one is older and if you have problems giving meds, let me know - I have directions on that too!
14) You know what you need to do and what works, so ignore everything everyone tells you based on your gut (including the above!!).
1) Buy a bulk supply of syringes (I get online at Allegro) for vitamins and other oral meds so you don't waste your times and hands washing. I also get blue disposable pads that I use when doing pooper changes b/c GI issues leave many explosive, dripping diapers and it saves on constantly washing the changing bad cover.
2) Ask for extra "samples" of nebulizer cups/masks - not sure if they still give - so you have a few extra sets.
3) Start Pulmoyzme 1 month after you start the breathing treatments. Would suggest to do immediately but think it is actually good to have a month of getting nebulizing under the belt and percussions. And ask to start hypertonic saline around 18 months.
4) Start vest asap. I want to say we started at 6 months but definitely by 9. Young enough that they don't fear or fight it and now second nature.
5) Buy a food storage round tall tube (small) to use to set clean cups in - need two for xopenex and pulmzyme - so both there and you can use hold and not have to get up and also put in empty vials.
6) If albuteral is harsh/makes baby shakey ask to get Xopenex instead.
7) Don't think a hot steam shower will help open lungs/clear congestion - bad bacteria live in shower.
8) For enzymes, don't open and split - pour entire cap into what you use to give it (applesauce) and then just use another spoon to scoop out half. You don't need to "count" beeds. When a tad older switch to prunes for delivery mechanism because then you can increase prunes with meds if/when constipation starts.
9) Take constipation serious and insist you get on Miralax and/or see a GI if you are having problems. We also had a DIOS (diagnosis not definite) hospitalization that I'm convinced could have been avoided if we had been more proactive.
10) Do not push food or the move to solids. Read "Child of Mine" by Ellyn Satter. I was so desperate for weight I pushed and put dear son off food and the feeding tube discussion until an OT recommended the book.
11) For coping, I read everything I can. I search pubmed.com for cystic fibrosis regularly and b/c I'm an academic I can access a lot of the articles so read the ones of interest. I listen to all the Vertex conference calls and read the message board on yahoo.com for Vertex. If you search for 809, 661 or Kalydeco you'll find some really good info. I see a few other Cfers actually post there and then some doctors and scientists do as well.
12) An exersaucer when a little older was so key b/c ds has horrible acid reflux, so he could stay upright after a meal and I could have a break.
13) When your little one is older and if you have problems giving meds, let me know - I have directions on that too!
14) You know what you need to do and what works, so ignore everything everyone tells you based on your gut (including the above!!).
Helenlight
New member
Hi again,
I think your scientific background and approach will be really helpful in the long run.
In terms of the steroids and antibiotics - hopefully your daughter is not being given these unless she is showing symptoms? The antibiotics are usually not too bad on the system, esp while she is on breast milk, but it pays to be careful with steroids. Our daughter has shown signs of being allergic to the penicillin range of ABs, so we are being mindful of what she gets given. She's had prednisone once to open her airways -reducing the inflammation and allowing pulmozyme to do it's job (which we are only allowed while we are in hospital as it is not funded until she turns 6).
Milk supply- if you can feed her as much/many times as you can (rather than expressing) this is a great way to keep supply up. It also helps to eat and drink lots, plenty of nourishing foods.
Regarding work- If the way you are managing it is working for you now, you may not need to change anything for the time being, but have a contingency plan in place. I have been at home with my little one, and it has made things easier when we went to hospital. We were in for 5 weeks and had to transfer to another city for 3 of those weeks. I'm currently pursuing working from home options (I'm a photographer/artist/craftsperson) which is so far working fairly well around other obligations. When Leyla is a bit older it will be easier for me to work and family members can share responsibility if/when she needs to be admitted.
Have you considered tutoring or relief teaching as temporary option?
Interestingly my Dad's wife (of 14 years) is a chemistry teacher, she taught me in high school, and her former husband had CF! My Dad has turned out to be the carrier so it's a strange connection that has been made.
I wish you all the very best, it will soon become second nature and the mother in you won't have to worry so much (or any more than a mother usually worries anyway!!)
xx
I think your scientific background and approach will be really helpful in the long run.
In terms of the steroids and antibiotics - hopefully your daughter is not being given these unless she is showing symptoms? The antibiotics are usually not too bad on the system, esp while she is on breast milk, but it pays to be careful with steroids. Our daughter has shown signs of being allergic to the penicillin range of ABs, so we are being mindful of what she gets given. She's had prednisone once to open her airways -reducing the inflammation and allowing pulmozyme to do it's job (which we are only allowed while we are in hospital as it is not funded until she turns 6).
Milk supply- if you can feed her as much/many times as you can (rather than expressing) this is a great way to keep supply up. It also helps to eat and drink lots, plenty of nourishing foods.
Regarding work- If the way you are managing it is working for you now, you may not need to change anything for the time being, but have a contingency plan in place. I have been at home with my little one, and it has made things easier when we went to hospital. We were in for 5 weeks and had to transfer to another city for 3 of those weeks. I'm currently pursuing working from home options (I'm a photographer/artist/craftsperson) which is so far working fairly well around other obligations. When Leyla is a bit older it will be easier for me to work and family members can share responsibility if/when she needs to be admitted.
Have you considered tutoring or relief teaching as temporary option?
Interestingly my Dad's wife (of 14 years) is a chemistry teacher, she taught me in high school, and her former husband had CF! My Dad has turned out to be the carrier so it's a strange connection that has been made.
I wish you all the very best, it will soon become second nature and the mother in you won't have to worry so much (or any more than a mother usually worries anyway!!)
xx
LittleLab4CF
Super Moderator
Just a little waxing of my childhood. As far as my mother working or not as a result of my chronic health issues, most years her mother was around as needed. A lot depends on how your newborn's potential presentations. I might suggest a special needs newborn care. Either formally or informally find a nurse or experienced daycare, familiar with sick children. Unless the presentation is severe, the normal baby problems, ear infections, croup, GI, etc. are pretty much the same just more of it. To be sure neither my mother nor grandmother were health proffessionals and grandma could knock off constipation, just like any mom. She was from the old school of enemas for example but she had the common sense of any doctor, what she did, first do no harm was classic.
It doesn't have to be a biological mother to deal with CF.
It doesn't have to be a biological mother to deal with CF.
T
TerriC
Guest
My daughter was diagnosed at birth with cf as she had meconium ileus. She had surgery at one day old and I was a total mess. One thing you need to know is to take it one day at a time - don't try to see into a future that might or might not happen. I live in Toronto and my daughter went to Sick Kids Hospital (one of the best CF centres in the world), and after her surgery, she had absolutely no symptoms at all. I was constantly worried about when it would start......She is now 24 and other than digestive issues she is a very healthy young women. Her lung function is in the high 90's and she did not start chest physio until she was in her teens and then only as a preventative measure. She has been on antibiotics from time to time but has never been hospitalized for lung problems - only this past year has she been in the hospital and it is all GI related. I really hope that everything works out for you - but try to enjoy your life and not worry about something that may not ever happen.
kelliemarie
New member
Palmera,
I am a CF patient so I don't know and can only imagine what you are going through as a parent. I do want to let you know though to not let this disease get your family down. I am a homozygous DF508 who just turned 23, is married, and just finished college. I currently am 99% FEV1 and I am living life to the fullest. The best advice I can give to you and your family is to live life as normal as possible, yes this disease can be life altering but once you get a routine down, it becomes a lot easier. Treatments are important so keep those up but most importantly I found is exercise. Also make sure you always feel comfortable with your CF care center. Your doctor should "consult" you about issues and then ask your opinion on the matter and be very attentive to any questions or concerns you have. Also always go with your gut instincts, don't let anyone belittle your concerns. After all, mother knows best. Hope this helps you and your family during this tough time, but always know you are not alone and know that CFer's are amazing people with wonderful spirit and drive that can overcome many things with the love and support of their families.
I am a CF patient so I don't know and can only imagine what you are going through as a parent. I do want to let you know though to not let this disease get your family down. I am a homozygous DF508 who just turned 23, is married, and just finished college. I currently am 99% FEV1 and I am living life to the fullest. The best advice I can give to you and your family is to live life as normal as possible, yes this disease can be life altering but once you get a routine down, it becomes a lot easier. Treatments are important so keep those up but most importantly I found is exercise. Also make sure you always feel comfortable with your CF care center. Your doctor should "consult" you about issues and then ask your opinion on the matter and be very attentive to any questions or concerns you have. Also always go with your gut instincts, don't let anyone belittle your concerns. After all, mother knows best. Hope this helps you and your family during this tough time, but always know you are not alone and know that CFer's are amazing people with wonderful spirit and drive that can overcome many things with the love and support of their families.
StayStrong
New member
My daughter is 7 months old and diagnosed at birth due to a merconium illeus and had surgery a few hours after birth. Like most new parents, we did not deal with the diagnosis well but after she came home from the NICU, we got into a routine. It was so overwhelming at first, but we are dealing with it one day at a time. I had no idea we could be as excited to see poop as we were the first time <img src="i/expressions/face-icon-small-smile.gif" border="0"> We live in Springfield, MO so not far from you and the CF clinic in Columbia comes down here every month for an outreach clinic which is a life saver for us. My husband stays home with her for now, which is a blessing but we will reevaluate this as time goes by. Overall, just enjoy your daughter. We kept the diagnosis to ourselves for a long time, but after talking to our amazing care team we decided that letting people know in a casual way would help her feel less like a sick child and more like a child who just needs a little extra prep work everyday. We don't want her to be pitied or think there is something wrong with her because she is an amazing kid. She has put on weight beautifully and just entered swim classes which has been great. Stay positive and don't let this stop you or her from enjoying your lives.
healthypeanut
New member
My May 2012 baby also has CF DDF508. I cried a lot when we first found out. It was good to get it all out - really it is a greiving process in a way - but now we are getting into a day-to-day groove and it seems a lot less overwhelming. She takes vitamax once a day, 8 pellets with every other meal, and chest pt 1x per day.
Here are some things that we do/advice for you:
- Don't treat her any different than any other kid.
- Tell who you want to tell, when you want to tell them. This doesnt need to be the first thing people learn about your baby.
- Take her outside alot, let her feel the air on her face
- Keep on top of the pharmacy and the prescriptions. Ask your CF social worker for help if you need it.
- Ask questions to your doctor. If you dont feel comfortable asking your doctor questions, find another one.
- Plan ahead. For us that means making bottles in advance in the fridge and putting the enzymes in dixie cups. I prepare enough for 24 hours. I put 8 pellets in one dixie cup and then I put another empty dixie cup on top (repeat so you have 8 or so of these sets). When it is time to eat I put the applesauce in the top cup and then mix in the enzmes from the bottom cup and feed her.
- Put the vitamax on a spoon instead of using the dropper. Have her eat the vitamins before the enzymes/applesauce.
- Sing to her during chest PT. My little one likes the front and back but is annoyed when we do her sides. Singing seems to disctract her a bit<img src="i/expressions/face-icon-small-smile.gif" border="0">
- Don't be afraid to feed her. She will let you know when she is full.
- Make sure the important people in her life have a list of important phone numbers/contacts for her.
- Write down her basic daily routine in detail just in case someone else needs to watch her.
- Let family members get comfortable taking care of her, giving her the enzymes, etc. Remember they are part of her life, too.
- Enjoy her, love her, kiss her constantly.
Here are some things that we do/advice for you:
- Don't treat her any different than any other kid.
- Tell who you want to tell, when you want to tell them. This doesnt need to be the first thing people learn about your baby.
- Take her outside alot, let her feel the air on her face
- Keep on top of the pharmacy and the prescriptions. Ask your CF social worker for help if you need it.
- Ask questions to your doctor. If you dont feel comfortable asking your doctor questions, find another one.
- Plan ahead. For us that means making bottles in advance in the fridge and putting the enzymes in dixie cups. I prepare enough for 24 hours. I put 8 pellets in one dixie cup and then I put another empty dixie cup on top (repeat so you have 8 or so of these sets). When it is time to eat I put the applesauce in the top cup and then mix in the enzmes from the bottom cup and feed her.
- Put the vitamax on a spoon instead of using the dropper. Have her eat the vitamins before the enzymes/applesauce.
- Sing to her during chest PT. My little one likes the front and back but is annoyed when we do her sides. Singing seems to disctract her a bit<img src="i/expressions/face-icon-small-smile.gif" border="0">
- Don't be afraid to feed her. She will let you know when she is full.
- Make sure the important people in her life have a list of important phone numbers/contacts for her.
- Write down her basic daily routine in detail just in case someone else needs to watch her.
- Let family members get comfortable taking care of her, giving her the enzymes, etc. Remember they are part of her life, too.
- Enjoy her, love her, kiss her constantly.