<img src="i/expressions/brokenheart.gif" border="0"> Hello everyone my name is Jenni, I have 3 children a 6yr old, 4yr old, 2yr old. They all just tested positive for cf. I am really having a difficult time trying to understand and deal with all of this. I was wondering if their is anyone who could offer a little insight or help into all of this.
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my 3 children tested positive
- Thread starter Jenni
- Start date
Jenni,
Do you have any specific questions that come to mind that that you could post? There are so many things about CF that are so different from person to person that it's hard to know what to tell you. If you ever want to talk off this site, I would be more than happy to do so-division902@hotmail.com.
Just a little history so you know who I am, I am 21 years old and my husband is 24 years old. He has Cystic Fibrosis and was diagnosed at 18 months old. I am not a parent of a CFer, but would be more than happy to talk to you and answer questions, as I know others on this site will do as well.
My thoughts and prayers are with you,
Julie (wife to Mark 24 w/CF)
Do you have any specific questions that come to mind that that you could post? There are so many things about CF that are so different from person to person that it's hard to know what to tell you. If you ever want to talk off this site, I would be more than happy to do so-division902@hotmail.com.
Just a little history so you know who I am, I am 21 years old and my husband is 24 years old. He has Cystic Fibrosis and was diagnosed at 18 months old. I am not a parent of a CFer, but would be more than happy to talk to you and answer questions, as I know others on this site will do as well.
My thoughts and prayers are with you,
Julie (wife to Mark 24 w/CF)
im not sure what you'd like to know,, i have 2 children one 6no cf and one 3 wcf... if you'd like to talk and ask questions ill be happy to talk to you... i have email Melissa1979@adelphia.net, aol messenger melissa04281, and yahoo, messenger, momtocfr... hope to hear from you soon....
Melissa, mom to 2 boys one wcf
Melissa, mom to 2 boys one wcf
Take it one day at a time. Finding out your child has this disease is a devastating blow - much less learning all 3 of your children have it. It is a mourning process that you must go through, but when you get through the process you will realize how fortunate you really are. The best advice I can give you is to educate yourself about this disease. There have been so many advances made in recent years, you have a real reason to have hope. This site is great for learning about the real life day to day struggles and emotions involving CF. I look to the following website for medical research progress and other scientific facts: www.cff.org They have a new video with updated research (Nov. 2004). Please ask any question you want at this site. We get all sorts of questions (from poop to enzymes to therapy routines).
Never give up hope. Your children will fill your heart with more love than you can possibly imagine. They will become your heroes.
Jena
mom to 3 yr old with CF
Never give up hope. Your children will fill your heart with more love than you can possibly imagine. They will become your heroes.
Jena
mom to 3 yr old with CF
Thank You all for your welcome. I believe that I'm still in the I can't believe this happening state of mind. I'm so mad at the doctors for taking so long to test my daughter. She has been so sick since birth with so many things. I felt as though every time I turned around something else was wrong with her, or she was having a different test, or surgery, or medicine. Then they finally said I could get A sweat test 2 months ago which was positive I was so upset I didn't think any thing else could be this bad. Then they asked me to test my 2 sons to rule them out, and they ended up being positive as well. I haven't slept since thursday. I look back and their our so many signs, yet when I asked my ped. to test her she said I was crazy, I was just looking for something to be wrong. well I was right. Gabrielle is my daughter she will be 5 this month. She was born a week late with IUGR, she had stoped growing at about week 35 and they didn't know until delivery. She weighed 5lbs 7oz. at 41 weeks. She was blue upon delivery she didn't eat in the hospital at all. She came home with a tube in her nose until she learned to eat. She delveloped torticolis at 2 months and started physical therapy. We were then told she had failure to thrive and developmental delay. She also had severe reflux and was not gaining any weight. When she was 9months old they did a fundoplication and G-tube insertion. At 13 months they told me she had refluxing kidneys. Was went on medicine for that until October of 2003 and they ended up having to do surgery to fix it. She had uncontrolable bowel up until a couple months ago. She got A UTI a couple months ago that grew a cell founf in cf. So I fought with the doctors to get the test done. At this point I don't know how much more I can take. What do I have to look forward to happening to them? Do your children do well in school or do they get alot? How do you afford all the medications and proboitics(sp)? How do you explain do them why their always sick? What should I be doing right now to help them? What should I be doing to help myself? I feel so bad for them yet this is all so new to me. I live in suburb outside of Chicago. I don't know if I should find new doctors because The ones I had ignored this for so long or If I should stay with them for the time being. I am so lost in this but yet it consumes my whole day and night this is all I think about 24 hours aday. I feel like I'm falling apart. Any advice at this point would be greatly loved and needed. Thank you again Jenni
Jenni,
First of all take a deep breath. Are you married and what kind of support is your husband giving you if you are? I am curious to know what suburb you live in. I am in Cincinnati, Ohio but my aunt lives in St Charles. If you arent happy with your docs I would check into someone else. I heard from someone else on this sight that they have great CF docs in Peoria. You may want to check that out. It sounds like you have been through hell and back the last few years but now that you know what is wrong you can begin to take action. That is what you have to do with this disease. I dont think you need to tell your daughter anything at this point except that she has certain things that need medicine to make her feel better. My daughter is going to be nine in a few weeks and she has CF. We have good days and bad. Believe me the kids become very smart as you start their treatments. I would definitely focus on your daughter right now. If your sons appear healthy then they will be easier to handle. They probably will only have to start taking enzymes and doing breathing treatments. They will probably fight it at first but it will become a part of their life and they really wont know any different. Your daughter sounds like she may need a little more attention but with the right docs and meds she will probably be feeling better in no time.
I remember when I first found out Rachel had this disease and I had to do the meds and the treatments and I thought I would absolutely have a breakdown. I thought I cant do all this all the time but it just becomes part of your life and you really dont think about after awhile. You will get a routine down. I know you probably dont want to hear that right now but it will be ok. It is also ok to mourn and cry and scream and be very mad.
About affording everything hopefully you have good insurance. I dont know what your situation is but in Ohio they have BCMH which is the bureau for children with medical handicaps. It is supplemental to your primary insurance and helps with copays and deductibles and it is only for children with medical conditions. You may want to check and see if Illinois has the same type of thing.
All I can say is that this site can be very informative and helpful for opinions. It can also be upsetting because there are so many different situations with kids and CF. Some much worse and some better so just be careful what you read and look at. Just because one person is horrible and having a lung transplant does not necessarily mean that is what is in store for you. I would be glad to talk with you anytime. My email is Tdim5@aol.com.
Please use me if you need to talk, cry or just get opinions or info. I know that I wish I would have had someone like that when Rachel was diagnosed. Hang in there and you will be in my thoughts and prayers.<img src="i/expressions/heart.gif" border="0"> Teri
First of all take a deep breath. Are you married and what kind of support is your husband giving you if you are? I am curious to know what suburb you live in. I am in Cincinnati, Ohio but my aunt lives in St Charles. If you arent happy with your docs I would check into someone else. I heard from someone else on this sight that they have great CF docs in Peoria. You may want to check that out. It sounds like you have been through hell and back the last few years but now that you know what is wrong you can begin to take action. That is what you have to do with this disease. I dont think you need to tell your daughter anything at this point except that she has certain things that need medicine to make her feel better. My daughter is going to be nine in a few weeks and she has CF. We have good days and bad. Believe me the kids become very smart as you start their treatments. I would definitely focus on your daughter right now. If your sons appear healthy then they will be easier to handle. They probably will only have to start taking enzymes and doing breathing treatments. They will probably fight it at first but it will become a part of their life and they really wont know any different. Your daughter sounds like she may need a little more attention but with the right docs and meds she will probably be feeling better in no time.
I remember when I first found out Rachel had this disease and I had to do the meds and the treatments and I thought I would absolutely have a breakdown. I thought I cant do all this all the time but it just becomes part of your life and you really dont think about after awhile. You will get a routine down. I know you probably dont want to hear that right now but it will be ok. It is also ok to mourn and cry and scream and be very mad.
About affording everything hopefully you have good insurance. I dont know what your situation is but in Ohio they have BCMH which is the bureau for children with medical handicaps. It is supplemental to your primary insurance and helps with copays and deductibles and it is only for children with medical conditions. You may want to check and see if Illinois has the same type of thing.
All I can say is that this site can be very informative and helpful for opinions. It can also be upsetting because there are so many different situations with kids and CF. Some much worse and some better so just be careful what you read and look at. Just because one person is horrible and having a lung transplant does not necessarily mean that is what is in store for you. I would be glad to talk with you anytime. My email is Tdim5@aol.com.
Please use me if you need to talk, cry or just get opinions or info. I know that I wish I would have had someone like that when Rachel was diagnosed. Hang in there and you will be in my thoughts and prayers.<img src="i/expressions/heart.gif" border="0"> Teri
hi jenni,
im from chicago ....town of mokena where r u from? i have a great cf doctor you would love her! e-mail me if you like i can give you all the info... i swear by her. my name is gail and i have a 16 yr w/cf. anything i can do for you just ask! my e-mail is maptcb@comcast.net put cf or something so i know ok! i hope to hear from you...take it easy as time goes by you will be just fine and so will those sweet babies! praying for you!
gail
im from chicago ....town of mokena where r u from? i have a great cf doctor you would love her! e-mail me if you like i can give you all the info... i swear by her. my name is gail and i have a 16 yr w/cf. anything i can do for you just ask! my e-mail is maptcb@comcast.net put cf or something so i know ok! i hope to hear from you...take it easy as time goes by you will be just fine and so will those sweet babies! praying for you!
gail
Thank you to everyone who has responded. I live in OakLawn and I currently use Loyola hospital. I would very much apprieciate what ever info anyone has. I know with time everything will get easier. Yes I am married and my husband is supportive and upset at the same time. The bad thing is he works like 60 to 70 hours a week so I feel like a single parent. I go to the doctors by myself with them and take them for the test by myself it's just really hard. My oldest is 6 and just started school this year and has missed so much do to being sick and so many doctor appointments. I think he has missed Close to 30 days already I just hope it doesn't continue like this. I really do feel better after finding this site and being able to vent some. My email is Rugrats3@hotmail.com if anyone wants to email. Thanks again
Hi Jenni,
I'm very sorry it took so long for the diagnosis. I live in River Forest, just west of Oak Park. Although Loyola is closer to us, we take Samantha to Children's Memorial. They have some great people there. Samantha is my youngest of three. She was diagnosed at three months. She is now almost two.
Please feel free to e-mail me at mdgoslin@comcast.net. We can exchange phone #'s and talk.
Take Care,
Maria (mother of three daughters, the youngest, Samantha w/cf)
I'm very sorry it took so long for the diagnosis. I live in River Forest, just west of Oak Park. Although Loyola is closer to us, we take Samantha to Children's Memorial. They have some great people there. Samantha is my youngest of three. She was diagnosed at three months. She is now almost two.
Please feel free to e-mail me at mdgoslin@comcast.net. We can exchange phone #'s and talk.
Take Care,
Maria (mother of three daughters, the youngest, Samantha w/cf)
Hi Jenni,
One thing to remember, as hard as it is to deal with, is that this diagnosis will improve the quality of life for your daughter [and sons, down the track]. Knowing that they have CF will now allow them to get the proper treatments, which will help their health A LOT. Your daughter's weight loss may be helped by enzymes.
One of the first things I'd do is try to find a CF clinic close to you, call them and explain your situation. As well as telling you how you can get an appointment, they will probably be able to recommend a counsellor or social worker to help you with some of the things you're dealing with. A specialised CF doctor will be a lot different to deal with than a regular GP and I think you'll find they are able to answer all your questions that a "normal" doctor could not. At clinics you usually have access to different people like pulmonologists, nutritionists and anyone else that is more specialised for dealing with the more common [and less common] problems with CF. Just as a note, I feel frustrated with most GPs even though they know I have CF.. my CF doctor is so much easier to talk to and understands how different each case can be.
To give you an idea of my situation.. I am 20 years old and live in Australia, and was diagnosed at birth [we have a mandatory genetics screening process for every newborn]. I weighed 5 pounds 13 ounces and also had issues gaining weight. Putting me on digestive enzymes helped a lot and although I've always been pretty skinny, my weight has never been a big problem since I was little. My case of CF is quite mild so I didn't really miss much school, except that the bugs going around always affected me more and for longer periods than most other kids.
With CF, you just have to take every day as it comes. Try not to think about the life expectancy, because it's just not a true indication of the disease. There are people in their 60s and at least one in their 70s with CF. Each case is so very different that all your children may lead totally normal lives, aside from some extra medication and occasional hospital stays. I really believe that a diagnosis is a step forward, even though it's hard to deal with.
I wish you tand your children he best and will keep you in my thoughts.
One thing to remember, as hard as it is to deal with, is that this diagnosis will improve the quality of life for your daughter [and sons, down the track]. Knowing that they have CF will now allow them to get the proper treatments, which will help their health A LOT. Your daughter's weight loss may be helped by enzymes.
One of the first things I'd do is try to find a CF clinic close to you, call them and explain your situation. As well as telling you how you can get an appointment, they will probably be able to recommend a counsellor or social worker to help you with some of the things you're dealing with. A specialised CF doctor will be a lot different to deal with than a regular GP and I think you'll find they are able to answer all your questions that a "normal" doctor could not. At clinics you usually have access to different people like pulmonologists, nutritionists and anyone else that is more specialised for dealing with the more common [and less common] problems with CF. Just as a note, I feel frustrated with most GPs even though they know I have CF.. my CF doctor is so much easier to talk to and understands how different each case can be.
To give you an idea of my situation.. I am 20 years old and live in Australia, and was diagnosed at birth [we have a mandatory genetics screening process for every newborn]. I weighed 5 pounds 13 ounces and also had issues gaining weight. Putting me on digestive enzymes helped a lot and although I've always been pretty skinny, my weight has never been a big problem since I was little. My case of CF is quite mild so I didn't really miss much school, except that the bugs going around always affected me more and for longer periods than most other kids.
With CF, you just have to take every day as it comes. Try not to think about the life expectancy, because it's just not a true indication of the disease. There are people in their 60s and at least one in their 70s with CF. Each case is so very different that all your children may lead totally normal lives, aside from some extra medication and occasional hospital stays. I really believe that a diagnosis is a step forward, even though it's hard to deal with.
I wish you tand your children he best and will keep you in my thoughts.
How do you know if your with a cf center. I see the pulmonary doctor on wednesday it will be the 4th time in 2 months we have met with her. Are their any really key things i should ask her, or find out right know. Gabrielle has been put on breathing treatments and enzymes, and proboitics. They are going to talk to me about Zachary and Jacob on Wednesday since they just tested postive and decide what to start doing with them.
Hi Jenni-
Loyola is an accredited CF Center as is Children's Memorial, University of Chicago, Lutheran General, and I think, Rush Presb. (not quite sure on that). We asked about Loyola since it is five minutes from our house, and the team at Children's told us that they have a good reputation but that they are a much smaller center with fewer staff. That could be a good thing or a negative thing, I guess.
Have they done throat cultures on all your children? They should do this routinely to monitor some of the bacterias that CF patients frequently acquire. Also the six year old and five year old will probably get PFT's (pulmonary function tests). Also, they should allow you ample time with a social worker. He/She can help with getting in touch with organizations to help pay for meds. Plus, they are a shoulder to lean on. Talk to them and get your feelings out, that's what they are there for.
At Children's we have a support group that meets monthly for parents of newly diagnosed patients. It has helped a lot. Perhaps Loyola has one too. I know it is all overwhelming and scary at first, and it may take more than a year to get better, but it will become manageable.
Maria (mother of three daughters, the youngest, Sami w/cf)
Loyola is an accredited CF Center as is Children's Memorial, University of Chicago, Lutheran General, and I think, Rush Presb. (not quite sure on that). We asked about Loyola since it is five minutes from our house, and the team at Children's told us that they have a good reputation but that they are a much smaller center with fewer staff. That could be a good thing or a negative thing, I guess.
Have they done throat cultures on all your children? They should do this routinely to monitor some of the bacterias that CF patients frequently acquire. Also the six year old and five year old will probably get PFT's (pulmonary function tests). Also, they should allow you ample time with a social worker. He/She can help with getting in touch with organizations to help pay for meds. Plus, they are a shoulder to lean on. Talk to them and get your feelings out, that's what they are there for.
At Children's we have a support group that meets monthly for parents of newly diagnosed patients. It has helped a lot. Perhaps Loyola has one too. I know it is all overwhelming and scary at first, and it may take more than a year to get better, but it will become manageable.
Maria (mother of three daughters, the youngest, Sami w/cf)
Thank you for that info. Yes my daughter had a throat culture done already and the boys will on wednesday. I will look into talking with a social worker to get more info. They said my daughter the 5 yr old was to small to do the lung function test. They did do a chest x-ray though. I am going to talk to them alot more on wednesday. Hopefully I'll get everything I need done.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Just wanted to ask, have you always been at Loyola? Or did all of Gabrielle's prior medical care (surgery, g-tube) take place somewhere else? I think its terrible that we as parents often have to convince doctors that CF might be a possibility. If we can go research online and find the possible diagnosis, how can a doctor with so much training miss it? I hear so many stories like that online. They should teach med students, if you see FTT (failure to thrive), respiratory symptoms, digestive issues, RULE OUT cf.
Sorry, just rambling . . . Good luck on Wednesday!
Maria
Sorry, just rambling . . . Good luck on Wednesday!
Maria
Yes I was always been at Loyola My 1st child I had preeclampsia I delivered at 38 weeks. He was ok until he was 4 weeks old and then he stop breathing They had to due surgery to sew his epagaltus open because it keep collasping. He has had tubes in his ears 4 times, his tonsils and adnoids have been removed. But he still was constantly getting sick. Gabrielle was born at 41 weeks and I explained all her problems so far. With Jacob I was seen by the high risk doctors because of all of the complications Gabrielle had, and I also was severely sick all 3 pregnacies. You would think they would look for the obvious but they don't and it is very sad. The kids are the ones who suffer from it. I feel if they would have found this out sooner alot of things that have happened to Gabrielle wouldn't have happened. The weight is one of her biggest issues right now. When she was a year old she weighed 15 pounds she could fit into 6month clothes. She still is so tiny only 30lbs. at 5, my 3 yr old weighs 30lbs. Thanks for wishing me luck I'll need it.
NoDayButToday
New member
Hi Jenni,
I just wanted to say, if your daughter is 5 she may be able to do PFTs, depending on how mature she is. I think I started doing them when I was around 4 or 5. Basically, they involve taking deep breaths and exhaling as fast as you can, and some other breathing exercises. Even if she can't understand what all of the tests require (the panting one may be a bit confusing), she may be able to understand taking a deep breath and then "Blowing out birthday candles" (that's the one they used with me- some clinics even have a computer program that shows candles). It's worth asking your doctor, since they are very helpful to doctors.
Good luck. Feel free to bounce any questions you have off of us here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I just wanted to say, if your daughter is 5 she may be able to do PFTs, depending on how mature she is. I think I started doing them when I was around 4 or 5. Basically, they involve taking deep breaths and exhaling as fast as you can, and some other breathing exercises. Even if she can't understand what all of the tests require (the panting one may be a bit confusing), she may be able to understand taking a deep breath and then "Blowing out birthday candles" (that's the one they used with me- some clinics even have a computer program that shows candles). It's worth asking your doctor, since they are very helpful to doctors.
Good luck. Feel free to bounce any questions you have off of us here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi-
It sounds like you are getting good care, but you asked how you can find out if your hospital is a CF center. You can go to www.cff.org and click on the CF Center icon. This is the offical website for the CF Foundation (it has lots of great information). You can look up every CF center in the nation and get all their information. As you are probally learning, you and your family need more than just a pulmonologist - each center has a team that will help your children in every way - a respiratory therapist, a nutritionist, a social worker, a nurse and, of course, the doctor. Together they work to giving the best care your children need. They also are a wonderful source of support to your family.
I wanted to add that my prayers are with you. Learning about and coping with CF is very difficult. Just take it one step at a time. Find a friend that you can lean on. It sounds like you are handling everything with strength and courage. Take care and stay strong. Your children are lucky to have such a strong, caring mother.
--Katrina, mother of Sean (6) w/cf, Carolyn (5) w/o cf, and Allison (3) w/o cf
It sounds like you are getting good care, but you asked how you can find out if your hospital is a CF center. You can go to www.cff.org and click on the CF Center icon. This is the offical website for the CF Foundation (it has lots of great information). You can look up every CF center in the nation and get all their information. As you are probally learning, you and your family need more than just a pulmonologist - each center has a team that will help your children in every way - a respiratory therapist, a nutritionist, a social worker, a nurse and, of course, the doctor. Together they work to giving the best care your children need. They also are a wonderful source of support to your family.
I wanted to add that my prayers are with you. Learning about and coping with CF is very difficult. Just take it one step at a time. Find a friend that you can lean on. It sounds like you are handling everything with strength and courage. Take care and stay strong. Your children are lucky to have such a strong, caring mother.
--Katrina, mother of Sean (6) w/cf, Carolyn (5) w/o cf, and Allison (3) w/o cf
Jenni,
My name is Pam. I am from the Dallas Texas area. I have a son, age 32, with CF. I was pretty overwhelmed, as well, I was a young mother with no other family support system, no job, and no insurance when I found out that he had CF when he was 4 y/o. He has been pretty sick off and on over the years. Well the reason I am writing is not to compare stories necessarily, but to encourage you that you CAN do this. You will survive. Initially it is terrible and you probably constantly ask "Why" "Why me", how come I cannot have healthy children like my friends or family members". My husband now gave me a cut out from the newspaper from Dear.... somebody, many years ago. (It essentially said that God placed my children with me because He knew that I had just what it took to handle them and their life situations, regardless of what life threw our way. ) I have had to cling on to that for 30 years and I am still clinging. Please remember our children are gifts from God. They are His children and he just uses us as instruments in their lives. I have learned to depend on God for my strength because there was absolutely NO ONE else out there who would totally be there through the WHOLE thing. Ya know what I mean? I absolutely do not know how mothers of CFs keep their sanity without God to cuddle them with His compassion. You can always e-mail me and I will help you, encourage you, cry with you, or whatever. My e-mail is pjmatthies@cooper-clinic.com. Always remember, YOU ARE NOT ALONE. Pam.
My name is Pam. I am from the Dallas Texas area. I have a son, age 32, with CF. I was pretty overwhelmed, as well, I was a young mother with no other family support system, no job, and no insurance when I found out that he had CF when he was 4 y/o. He has been pretty sick off and on over the years. Well the reason I am writing is not to compare stories necessarily, but to encourage you that you CAN do this. You will survive. Initially it is terrible and you probably constantly ask "Why" "Why me", how come I cannot have healthy children like my friends or family members". My husband now gave me a cut out from the newspaper from Dear.... somebody, many years ago. (It essentially said that God placed my children with me because He knew that I had just what it took to handle them and their life situations, regardless of what life threw our way. ) I have had to cling on to that for 30 years and I am still clinging. Please remember our children are gifts from God. They are His children and he just uses us as instruments in their lives. I have learned to depend on God for my strength because there was absolutely NO ONE else out there who would totally be there through the WHOLE thing. Ya know what I mean? I absolutely do not know how mothers of CFs keep their sanity without God to cuddle them with His compassion. You can always e-mail me and I will help you, encourage you, cry with you, or whatever. My e-mail is pjmatthies@cooper-clinic.com. Always remember, YOU ARE NOT ALONE. Pam.
I totally undrstand what your saying. I feel like everyone who has never been in this situation that says I'm so sorry really means that their sorry , but I feel it's more like I'm so sorry but I'm glad it's not mine that have cf. Maybe it's just me but i feel like that is what everyone is saying in the back of their heads. No pareent can truely understand what we go through on a day to day basis. I think I'm just at a mean part in this process of dealing with all this news lately. I don't want to have a bad attitude maybe it's the lack of sleep I'm not getting. I have made a decision I'm am going to strive to be completely positive and happy regardless of what happens I know it will be hard but I do believe That there is a rainbow at the end of the tunnel.