Help! I need advice. Grant is 8 weeks old today and was diagnosed with cf at about 2 weeks of age. Unfortunately, my parents don't quite understand that if they are sick - they can not see Grant. They say they can't live in a bubble and can't guarantee that they aren't sick when they come to visit. We have told them that if they are sick, with symptoms, they can't come and see Grant (they live 6 hours away - so planning gets a little hairy). We are not going to knowingly expose him to viruses or bacterial illnesses. I understand he will be exposed to many things in his lifetime that we can't control, but why would we expose him to someone who is knowingly sick??? Have any of you had to have this conversation with a loved one? Any links to resources about the importance of infection control for CF patients that would simplify this for my parents - who have no medical background and limited knowledge of the disease?? Thanks!
Need help with Non Compliant Family Members!!!
- Thread starter Grant2012
- Start date
If possible take your parents to CF clinic so they hear a doctor say how important it is to avoid known illnesses. Your the mom and you must protect your child. I actually went a year without letting my mother-in-law see my daughter because she gave my neice motrin to hide a high fever because she knew I would not have brought my daughter over for a holiday dinner. My daughter had no CF diagnosis, but I knew how often she was hospitalized for illness. Years later my mother-in-law never appologized, but we now get along and my wishes regarding illness are now respected. Sometimes being a mom stinks.
I have this same problem!!!! well simular! i am now 27, but growing up my family always smoked around me!! they never seemed to realize what they were doing. They never got the second hand smoke is bad!! THEY still do this!! i think my family forgets that i am sick, not that i have cf, but the fact of how serious this disease is. my last drawl was at thanksgiving when i was in a room and 5 family members were smoking. i finally spoke up and told them i would stop coming to family functions reguardless of what it is, christmas birthdays and such if they couldnt realize that them smoking around me isn't healthy and everytime i leave i can't breath and i am in pain!!! Christmas time we had a huge get together and my mother finally told EVERYONE that anyone who smokes is to do it OUTSIDE. which my own husband NEVER EVER smokes around me, if we are in a car for 5 hours he refuses to light up! still i haven't had to much of a problems since.
heres how i see it now that i am older. IF MY FAMILY HAD NOT SMOKED AROUND ME WHEN I WAS LITTLE, i honestly feel that i would have more life and be less sick as i am now. i think since they smoked that it shortened my life by days or whatever!
ALWAYS take precautions with your child. and your family should understand but if they dont then you do what you need to do to ensure that your child stays healthy. eventually they will get the picture when they cannot be around your baby bc failure to comply.
heres how i see it now that i am older. IF MY FAMILY HAD NOT SMOKED AROUND ME WHEN I WAS LITTLE, i honestly feel that i would have more life and be less sick as i am now. i think since they smoked that it shortened my life by days or whatever!
ALWAYS take precautions with your child. and your family should understand but if they dont then you do what you need to do to ensure that your child stays healthy. eventually they will get the picture when they cannot be around your baby bc failure to comply.
Aboveallislove
Super Moderator
Dear Mom,
I'm so sorry you have to face this in addition to your son's CF. In some ways it is hard for me to relate because my family and friends have always been respectful of my wishes and needs re infection control. And if they weren't, I wouldn't argue with them, I'd just not have visits. If you want information, you can print off CFF.org the info on infection control. If it were me, I'd send that along with a note about how much you love them and want them to be in Grant's life, but know that they would never want to do anything that could but Grant's health in jeopardy, and that you would love visits when they are healthy, but if they have a cough, fever, cold, that you'll need to reschedule. If you get push-back, I guess I'd just ask questions: Why is it that you think it is a good idea to expose Grant to an illness? How would you feel if Grant ended up in the hospital? Saying it sweetly and genuinely, not with the sarcasm or anger they'd deserve. And then if they haven't agreed, I wouldn't have them visit. And if they show up and are sick I would ask them to leave. Again, not with anger, but with sadness. I truly am sorry you are facing this b/c I know personally when I have someone who just abides by my request without comment, judgment, etc. it is the most comforting thing there is.
Becca's mom--how horrible! We rarely get to do family gatherings because my sister-in-laws three kids always have something. We don't make a deal out of it and don't expect them to change plans, but do expect to be given frank information so we can judge and decide for ourselves.
I'm so sorry you have to face this in addition to your son's CF. In some ways it is hard for me to relate because my family and friends have always been respectful of my wishes and needs re infection control. And if they weren't, I wouldn't argue with them, I'd just not have visits. If you want information, you can print off CFF.org the info on infection control. If it were me, I'd send that along with a note about how much you love them and want them to be in Grant's life, but know that they would never want to do anything that could but Grant's health in jeopardy, and that you would love visits when they are healthy, but if they have a cough, fever, cold, that you'll need to reschedule. If you get push-back, I guess I'd just ask questions: Why is it that you think it is a good idea to expose Grant to an illness? How would you feel if Grant ended up in the hospital? Saying it sweetly and genuinely, not with the sarcasm or anger they'd deserve. And then if they haven't agreed, I wouldn't have them visit. And if they show up and are sick I would ask them to leave. Again, not with anger, but with sadness. I truly am sorry you are facing this b/c I know personally when I have someone who just abides by my request without comment, judgment, etc. it is the most comforting thing there is.
Becca's mom--how horrible! We rarely get to do family gatherings because my sister-in-laws three kids always have something. We don't make a deal out of it and don't expect them to change plans, but do expect to be given frank information so we can judge and decide for ourselves.
We use to have the same problem with the smoking. But even before Abby was born...I am highly allergic and would be sick for days after visiting my in laws that live 15 minutes away. They would not care at all. I took it for my husband but when Abby came around I refused to come over and then the second someone would light up I would politely grab my husband and tell him it's time we leave dear. It unfortunately took a few years but finally they got the message....or maybe felt bad for all that Abby has went through and finally realized how CF is silent and unnoticeable until the damage is done. What they saw of her was a happy little bouncy kid with no problems. 
Maybe it just took them seeing first hand how their actions and life can make such a huge difference. I would say you are completely in the right mom!! You are your sons best advocate and if you won't...who will? Grant will thank you for being so strong for him later
Maybe it just took them seeing first hand how their actions and life can make such a huge difference. I would say you are completely in the right mom!! You are your sons best advocate and if you won't...who will? Grant will thank you for being so strong for him later JennyC summed it up: "CF is silent and unnoticeable until the damage is done." Exactly. It took me going to the hospital and the doctor saying directly to my husband "I know she looks like nothing's wrong with her... " I even needed to hear that. You get used to coughing and just never feeling really good anymore. It was almost a relief to know that there was a reason for it. A big one.
It's like any other thing in life. You look in the mirror and wonder where the crows feet came from. Where the extra pounds came from, or went to. All gradual changes, causal drifting. Small changes we often don't notice, but looking back, they were there. Hang in there with your family. You are right; don't let them knock you off course for Grant's future.
An excellent approach for getting others to re-think their position is to ask some really good questions like Aboveallislove mentioned . Then, wait until they answer. It will make them think. Also, get some written material, even stuff from this forum, and leave it with them.
Another thing that's very important to remember (in my humble opinion) is: All Things in Moderation. Protect Grant, but be careful not to become an alarmist. That will not help him either, and he may resent it as he gets older. Common sense (no smoking, no colds, and plenty of hand sanitizer) and ask God for wisdom. It's there for the asking!
Good luck!!
PS. Not my husband's fault... he felt devastated ("why didn't you tell me?") But I didn't know either.. thought it was bad asthma and "getting old." LOL.
It's like any other thing in life. You look in the mirror and wonder where the crows feet came from. Where the extra pounds came from, or went to. All gradual changes, causal drifting. Small changes we often don't notice, but looking back, they were there. Hang in there with your family. You are right; don't let them knock you off course for Grant's future.
An excellent approach for getting others to re-think their position is to ask some really good questions like Aboveallislove mentioned . Then, wait until they answer. It will make them think. Also, get some written material, even stuff from this forum, and leave it with them.
Another thing that's very important to remember (in my humble opinion) is: All Things in Moderation. Protect Grant, but be careful not to become an alarmist. That will not help him either, and he may resent it as he gets older. Common sense (no smoking, no colds, and plenty of hand sanitizer) and ask God for wisdom. It's there for the asking!
Good luck!!
PS. Not my husband's fault... he felt devastated ("why didn't you tell me?") But I didn't know either.. thought it was bad asthma and "getting old." LOL.
Here's the thing. You are the parent. It is your house. He is your baby. If he gets really sick and ends up on IV antibiotics, you're the one who will have to move into the hospital for somewhere between 1-3 weeks. We were in the hospital for just 3 days with a 6-month old, and it was not a fun experience.
Do not let them in the door. If they show up with a runny nose, if they cough, whatever, tell them to leave your house.
My parents are local and understand the medical issues, so it's easy for them to stay away if they're sick. My in-laws live in San Diego and we live in Chicago. If they get sick while they're here, they wasted a trip since they're not coming over. (Luckily, they're actually very good about it since they understand the issues, so they tell us and stay away or "visit" by Skype while they're here.) We've given them methods to stay healthy when flying and the few weeks before their trip to minimize their chances of getting sick, and they love that they can be proactive about it. (Wash/sanitize hands constantly, don't hug or kiss anyone hello, if you shake hands don't touch your face until you've used hand sanitizer/washed your hands, don't spend time with people who are sick or people with young children who are sick, when you get on the plane wipe everything down with travel bleach wipes -- belt, arms of the seat, tray table, etc.)
Since it's your parents who are the problem, then it's time to become mama bear about it. Yes, it might hurt your relationship with them, at least in the short-term, but at the end of the day, it's your child's life and quality of life you're talking about. And, more importantly, at the current age of your child, it's not like he will even remember these visits, so you don't really have to weigh his happiness/need to be a "normal" kid in this situation against health concerns like you will as he gets older.
Do not let them in the door. If they show up with a runny nose, if they cough, whatever, tell them to leave your house.
My parents are local and understand the medical issues, so it's easy for them to stay away if they're sick. My in-laws live in San Diego and we live in Chicago. If they get sick while they're here, they wasted a trip since they're not coming over. (Luckily, they're actually very good about it since they understand the issues, so they tell us and stay away or "visit" by Skype while they're here.) We've given them methods to stay healthy when flying and the few weeks before their trip to minimize their chances of getting sick, and they love that they can be proactive about it. (Wash/sanitize hands constantly, don't hug or kiss anyone hello, if you shake hands don't touch your face until you've used hand sanitizer/washed your hands, don't spend time with people who are sick or people with young children who are sick, when you get on the plane wipe everything down with travel bleach wipes -- belt, arms of the seat, tray table, etc.)
Since it's your parents who are the problem, then it's time to become mama bear about it. Yes, it might hurt your relationship with them, at least in the short-term, but at the end of the day, it's your child's life and quality of life you're talking about. And, more importantly, at the current age of your child, it's not like he will even remember these visits, so you don't really have to weigh his happiness/need to be a "normal" kid in this situation against health concerns like you will as he gets older.
LittleLab4CF
Super Moderator
Dear Mom and Dad,
I am so proud of my new baby, Grant, and I can't wait for you to watch him grow up. I am happy to let you hold and love my new baby but we have to be cautious. I am not just being a new mother, just like you protected me from harm when I was born, I need your help protecting Grant. Grant was born with a hereditary condition called cystic fibrosis or CF. Cystic fibrosis makes all the moist membranes like his nose, sinuses and lungs stuffy and congested as if he had a very, very bad cold. Grant may be fighting an infection right now because cystic fibrosis can almost guarantee a nice home for every possible infection. It is also possible he will have a similar problem in his tummy. This can be painful and we have to check often for malnutrition because certain foods won't be digested. Between his tummy problems and respiratory issues there is a lot we have to watch out for. When you were born, a baby with CF had an even chance of going out the front door or being carried out the back door of the hospital for burial. Grant is home from the hospital more keep him safe from sick people that have infections. His first infection could kill my baby and I know this is the last thing you want.
Grant has been in isolation ever since the doctors diagnosed Grant with CF. When you were born a doctor would have kept a CF baby isolated in a hospital for months until they figured out how much exposure to people the baby could tolerate. An infection that wouldn't even be noticed by somebody like either of you, could take a year of antibiotics to cure in Grant. This is why I am upset. Yes I respect and love you but I am very much like the parents who raised me. I am going to be changing his diapers, wiping, cleaning, and crying for my baby every minute from here on. I have assembled all the information I can, talked with doctors, parents and patients about CF. I am informed and I have teamed up with Grant's doctor. We have weighed the pro's and con's of everything to do for Grant. I am not making up rules to hide my baby from you, the doctor and I have decided to NOT expose Grant to viruses and bacteria that everybody carries around for now and the foreseeable future. Guarding Grant from exposure to infection gives him time to develop and when we see how he does with other CF issues and problems we can gradually introduce him to all the bugs we carry on and in us.
Remember how hard it was to raise a healthy baby? Think how much harder it will be the first time we are sitting outside his hospital room, praying for his life! Right now I need your prayers and best wishes. What I need most from you is to believe in me and trust MY judgment. I have no other choice but to protect Grant using standard medical isolation rules. They are also my rules and as long as you do as I say, when I say it everything will go so much better for us all. The first medical isolation rule is to make no exceptions to medical isolation rules and procedures. I know what I am doing here and I leave you with a choice. Stay home and be mad and Grant is isolated. Or much better, respect my wishes and learn the rules we have to follow for his safety and we all will enjoy Grant without risking his life every time somebody wants to pick him up.
All my love,___________
Then again, blow off trying to explain again and again and toss the baby in the bedroom when they show up. Install a lock on that door, while you’re at it. I hate to say it but ignorance is bliss only in a personal sense. My sister married a man from immigrant parents. Although his parents get a gold star for courage and tenacity they were infantile and desperately stupid people. A very smart, well educated man had these peasant stock parents better suited for a sheep crook in hand than a subway pass. These poor people had the best of intentions but I had to lock up anything and everything that could be otherwise screwed up or broken into parts when they visited. If I couldn’t explain why fiddling with the adjusting screws on a band saw could hurt me the next time I hit the switch, you just may be out of luck. Install that lock.
Until your little bundle of love coughs up a little more information on when and how badly his CF presents, you do what you have to. If your parents are nosing around now, they’ll get over whatever restrictions you have to impose. I know you want to kill them but if you did, you’d have to train new parents. Please don’t think I wrote this facsimile of a letter from the worst possible viewpoint for YOUR information. With luck his presentations won’t be anywhere close to the worst case I laid out. Wait and see, we a considerably more durable lot than people give us credit for. Grant has CF. Allow him to define his limits without prejudice. Whatever he does, don't let him own CF on any other than his own terms. Don't make him into a sick person. Printer and I have both escaped being caught with CF well past a time when our parents would have been over compensating for our potential disadvantages. Ifs ands and buts aside, CF isn't an infection to be cured but a condition that must be managed just like brushing your teeth. No more and no less quarter should be given to CF, although few people die from over brushing. One of the lucky things that late diagnosed CFers do enjoy is a childhood with no more than the usual worries impressed on every kid by their parents. There is something to be learned from ignoring everything you have no power to change. Others pick up the habit.
Old Cfers like Printer and me probably can’t be made anew with the new category of medicine that was born a few months before you got pregnant. With Kalydeco the first truly genetic medicine has arrived. It was designed for a specific CF mutation and it promises to help with a number of other CF mutations. Kalydeco embodies a blueprint for how gene repairing drugs will be developed here on. In the last year alone, Hypersal and a dozen other better working, easier tolerated drugs and therapies have come to the CF community the future is as bright as it can possibly be.
LL
I am so proud of my new baby, Grant, and I can't wait for you to watch him grow up. I am happy to let you hold and love my new baby but we have to be cautious. I am not just being a new mother, just like you protected me from harm when I was born, I need your help protecting Grant. Grant was born with a hereditary condition called cystic fibrosis or CF. Cystic fibrosis makes all the moist membranes like his nose, sinuses and lungs stuffy and congested as if he had a very, very bad cold. Grant may be fighting an infection right now because cystic fibrosis can almost guarantee a nice home for every possible infection. It is also possible he will have a similar problem in his tummy. This can be painful and we have to check often for malnutrition because certain foods won't be digested. Between his tummy problems and respiratory issues there is a lot we have to watch out for. When you were born, a baby with CF had an even chance of going out the front door or being carried out the back door of the hospital for burial. Grant is home from the hospital more keep him safe from sick people that have infections. His first infection could kill my baby and I know this is the last thing you want.
Grant has been in isolation ever since the doctors diagnosed Grant with CF. When you were born a doctor would have kept a CF baby isolated in a hospital for months until they figured out how much exposure to people the baby could tolerate. An infection that wouldn't even be noticed by somebody like either of you, could take a year of antibiotics to cure in Grant. This is why I am upset. Yes I respect and love you but I am very much like the parents who raised me. I am going to be changing his diapers, wiping, cleaning, and crying for my baby every minute from here on. I have assembled all the information I can, talked with doctors, parents and patients about CF. I am informed and I have teamed up with Grant's doctor. We have weighed the pro's and con's of everything to do for Grant. I am not making up rules to hide my baby from you, the doctor and I have decided to NOT expose Grant to viruses and bacteria that everybody carries around for now and the foreseeable future. Guarding Grant from exposure to infection gives him time to develop and when we see how he does with other CF issues and problems we can gradually introduce him to all the bugs we carry on and in us.
Remember how hard it was to raise a healthy baby? Think how much harder it will be the first time we are sitting outside his hospital room, praying for his life! Right now I need your prayers and best wishes. What I need most from you is to believe in me and trust MY judgment. I have no other choice but to protect Grant using standard medical isolation rules. They are also my rules and as long as you do as I say, when I say it everything will go so much better for us all. The first medical isolation rule is to make no exceptions to medical isolation rules and procedures. I know what I am doing here and I leave you with a choice. Stay home and be mad and Grant is isolated. Or much better, respect my wishes and learn the rules we have to follow for his safety and we all will enjoy Grant without risking his life every time somebody wants to pick him up.
All my love,___________
Then again, blow off trying to explain again and again and toss the baby in the bedroom when they show up. Install a lock on that door, while you’re at it. I hate to say it but ignorance is bliss only in a personal sense. My sister married a man from immigrant parents. Although his parents get a gold star for courage and tenacity they were infantile and desperately stupid people. A very smart, well educated man had these peasant stock parents better suited for a sheep crook in hand than a subway pass. These poor people had the best of intentions but I had to lock up anything and everything that could be otherwise screwed up or broken into parts when they visited. If I couldn’t explain why fiddling with the adjusting screws on a band saw could hurt me the next time I hit the switch, you just may be out of luck. Install that lock.
Until your little bundle of love coughs up a little more information on when and how badly his CF presents, you do what you have to. If your parents are nosing around now, they’ll get over whatever restrictions you have to impose. I know you want to kill them but if you did, you’d have to train new parents. Please don’t think I wrote this facsimile of a letter from the worst possible viewpoint for YOUR information. With luck his presentations won’t be anywhere close to the worst case I laid out. Wait and see, we a considerably more durable lot than people give us credit for. Grant has CF. Allow him to define his limits without prejudice. Whatever he does, don't let him own CF on any other than his own terms. Don't make him into a sick person. Printer and I have both escaped being caught with CF well past a time when our parents would have been over compensating for our potential disadvantages. Ifs ands and buts aside, CF isn't an infection to be cured but a condition that must be managed just like brushing your teeth. No more and no less quarter should be given to CF, although few people die from over brushing. One of the lucky things that late diagnosed CFers do enjoy is a childhood with no more than the usual worries impressed on every kid by their parents. There is something to be learned from ignoring everything you have no power to change. Others pick up the habit.
Old Cfers like Printer and me probably can’t be made anew with the new category of medicine that was born a few months before you got pregnant. With Kalydeco the first truly genetic medicine has arrived. It was designed for a specific CF mutation and it promises to help with a number of other CF mutations. Kalydeco embodies a blueprint for how gene repairing drugs will be developed here on. In the last year alone, Hypersal and a dozen other better working, easier tolerated drugs and therapies have come to the CF community the future is as bright as it can possibly be.
LL
DS spent his first 6 weeks of life in the hospital. He had a bowel obstruction and recovered fairly quickly from that; however, he developed a couple infections and had to be on IV antibiotics 10-14 days each time. We had rules that people needed to wash their hands before holding him. At holidays we stressed that sick people shouldn't be around him -- it was infuriating the first few times when someone would claim to "just have a cold" and it'd end up being pneumonia or bronchitis. We told my MIL that if someone appeared at a family function and was ill, we would leave. We missed a wedding reception because it was held at a venue where smoking was allowed. Don't know HOW many times I'd catch well meaning family members sharing a drink from a glass with DS or a bite off their plate. Ugh!
My MIL eventually got over her embarrassment, but sometimes there are still issues. Dealing with elderly great aunts and uncles who have COPD or autoimmune issues and active infections. Who knows WHAT some of them culture. Summers are easier to deal with because family events are usually held outdoors and those elderly relatives are usually too ill to attend anymore. We just have to stand our ground and say if DS gets sick, especially with some of the nastier bugs it could very well damage his lungs and with certain infections could ruin his chances of getting a lung transplant should he need one. I'm beyond a few hurt feelings when it comes to my child's health. He leads a fairly normal life -- goes to school, active in sports and other activities; however, I'm not going to be guilted into something that could potentially harm him.
My MIL eventually got over her embarrassment, but sometimes there are still issues. Dealing with elderly great aunts and uncles who have COPD or autoimmune issues and active infections. Who knows WHAT some of them culture. Summers are easier to deal with because family events are usually held outdoors and those elderly relatives are usually too ill to attend anymore. We just have to stand our ground and say if DS gets sick, especially with some of the nastier bugs it could very well damage his lungs and with certain infections could ruin his chances of getting a lung transplant should he need one. I'm beyond a few hurt feelings when it comes to my child's health. He leads a fairly normal life -- goes to school, active in sports and other activities; however, I'm not going to be guilted into something that could potentially harm him.
I had a very frustrating issue with Colts own mother after he was born. Talk about a bad situation! I finally just got downright rude with her and told her that I forbid her irresponsible action around our son and that if it didnt stop I was taking him and leaving! Eventually I left her for that reason as well as her inability or lack of want to care for him. Her mother was and is still the same way, so I forbid him to visit her or go to family functions that she will be present. Seems harsh but I will do whatever it takes to protect him! In your situation I would try and be patient and show them some basic CF information, if that doesn't work then get more stern. If it still doesn't work then take the no holds barred approach and just forbid them from seeing them until they can find it in their hearts to want to protect him as much as you do.