Having a hard time with diagnosis

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anonymous

New member
Hi Carrie,
I am 32 w/CF. I now go to the adult clinic at Washington University at Barnes in St.Louis. I grew up at Children's...it is a great place. Born in 1973, I wasn't expected to live many years. Medicine is so much better than it was then. I am still doing quite well with lung function still in the low 70s. I have other complications as well...but I am married and have a beautiful 8 yr old daughter.
Who is your son's doctor..if you dont mind telling me.
Although I am not the parent of a child with CF...I can tell you from my own experience in living with it...you have to have a positive outlook. Your son is in great care!
Dea
32 w/CF
 
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LouLou

New member
I used to live in St. Louis. I went to 8th grade - graduation from high school. I saw Dr. Schuler. Do either of you see this doctor?
 
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anonymous

New member
Thank you everyone for the responses! It really makes me feel so comforted and you can't read "you remind me of myself" enough! Today has been a much better day. I haven't dwelled on things so much and just enjoyed him. Of course, every little cough I freak out, but I think that is more clearing his throat. I wish I would have posted from the beginning of this ordeal. All of these responses sure would have helped around the holiday season when we received the diagnosis.

For the St. Louis folks, my son has seen Dr. Cannon. She is great and very positive.

Carrie, mom to Sam w/CF
 
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anonymous

New member
Hey Lauren,
I too saw Dr. Schuler....the best doctor I have ever known! She is actually still at Children's, but deals mostly with transplant patients now. I visit her periodically when I have a doc appt...I walk over to see her. I keep in touch with her. I was her first CF patient that had a child while in her care...so I guess you can say we have a special bond. She was even in the delivery room with me! I followed her from Children's to St.Johns Mercy...where she was for about 5 yrs...then she went back to Children's. It broke my heart...I was an adult and couldnt follow her to Children's. So, from her recommendation...I am at Barnes.

To Carrie,
I have heard only good things of Dr. Cannon. I am glad you are feeling better about your son's diagnosis. I can't say enough that he is in a great place for his care! Good Luck!
Dea
32 w/CF
 
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anonymous

New member
Hi, Carrie
My name is Jeanine and I have 3 children 2 with cf. Both of my children were diagnosed at st.Louis Childrens hospital. We see Dr Ferkol and we love him. Both of my children were dx a day apart. My son at the time was one and my daughter getting ready to turn five. I know how you feel. I am just able to talk more about it and it has been 4 years since they were dx. I since then had another child and she does not have cf and is not a carrier. I hope everything goes well. My son now 5 has had it rougher than his sister. But we are doing fine now. We go to a large church in St.Louis and have great support. My daughter has only been in the hospital 1 time for a night. My son, I lost count proubly around 20 or more in 4 years. He just started pre-k this week at he loves it. Hope to here from ya soon.
Jeanine
Mother to Sydney9 w/cf , Trey 5 w/cf and Abbey 2 w/o cf
 
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izemmom

New member
Carrie,

I wanted to post again to let you know that I just can't get something you wrote out of my head. You said that current life expectancies are based on the meds those patients took thirty years ago. I never though of it that way! Of Course! the meds our little ones are taking have to be new and improved,right? And we know so much more about keeping them helathy, now, right? So, why shouldn't we expect that they'll live much longer than thirty? I really think that your words are the most hope-filled words I've read in 4 1/2 months. Thank you for posting!
 
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folione

New member
Glad to see you're quick about looking for support and a place to talk - it can be hard dealing with old friends in these situations because it's obviously what is on your mind most of the time but it's hard for those on the "outside" to truly understand what it's like. I'm constantly suprised at the way friends I thought were fairly smart can just not understand that you don't grow out of CF or that you can be worried about what looks like a healthy baby.

Something I try to remind myself when I get to worrying about my son's CF is that he is so much better off than many children simply because he has a known condition - it means he gets more health attention than the so-called "perfect" child. He's actually been in far better health for his 3 years than any of his playmates - and the extra medines don't really phase him. He is also pretty much doing everything any other 3 year old does, for better and worse - so take heart: CF does not define the child.
 
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anonymous

New member
I was thinking about this post as well. i wanted to add that it is VERY important to not just take good care of your Cf child but also to take good care of yourself. The primary caregivers tend to put themselves last. Whatever, you love to do make time to do it. I used to roll my eyes at this and say I don't have time. You need to make time. You'll be a good role model for your child. I love to go running and outdoorsy stuff so i started running again. it has made a difference for me in my attitude. I burn off my worries outside. My daughter with Cf sees this and realizes how important exersize is and time to yourself. As well as my son without Cf sees this.. I do not want CF to control my families' life. we need to enjoy the things we always did, I realize sometimes it's not possible to do this, like when my daughter was in the hospital, but even then my sister made me(sounds crazy) take a shower using fancy shower gel. it was a simple thing but at the time it was a big deal.

Also, I find that I need to make an effort to spend time with my son(no CF) just the 2 of us. We rarely get to do this but this is another thing I feel is very important. One time we had a "date night". My son and I went out for pizza and a movie. He has his own needs that may be quite different than my daughter's.

Rebecca(mom to Sammy 7 no Cf and Maggie 3 with CF)
 
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cdale613

New member
Hi Carrie,

Please remember - a diagnosis is not a death sentence.

When I was diagnosed in 1984, (at age 4) there were virtually no CF specific medications. I went virtually untreated (with the exception of enzymes) until age 11, at which point I started inhaling gentamycin, formulated for injection, through my nebulizer. There was no pulmozyme, no antibiotics formulated for inhalation, no completed human genome project, no hypertonic saline, etc. etc. The advancements that have been made in the treatment of CF are staggering, and will continue to extend and save lives.

Is my life complicated by CF? Absolutely. I do about 2-3 hours of exercise, PT, and meds every day. But, I also work full time, have a Master's degree, am engaged, and am living my life.

Your son has a lot of challenges in front of him. Your challenge is to raise him in such a way that he faces those challenges, understands the price of non-compliance with treatments, and the long term benefits of his treatments as he grows into adolecence and adulthood. For now, you need to treat him like a "normal kid" - let him be active, play outside, etc. As he grows, physical activity, will strengthen his lungs, clear them, and benefit him greatly.

Take each day as it comes - if he's healthy now, don't be too worried. If he's healthy tomorrow, don't be too worried, etc. If his health declines, fine, worry, but don't drive yourself crazy now with what "might" happen - you are in this for the long run too, and for your son's sake, can't be imagining worst case scenarios when he is doing well - that will help no one.

Just my two cents.

Chris

25 w/ cf
 
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anonymous

New member
hi carrie
just like you my son was diagnosed with cf 6 months ago. My son Benjamin is now 6 months old and I didn`t have too much trouble accepting the fact that he has CF. My husband had alot of trouble accepting it along with his family as it had never come out before. Like you i have so many questions and I feel sad some of the time. I think we need to go through some of these emotions to make us stronger. Benjamin is also well and thriving since he was diagnosed with a bowel obstruction at birth. Sometimes I think they have diagnosed him wrong but he has all the signs. It was quite a shock when we were told as I have to other children 14 and 13 to a different partner. I suppose you are just going through the motions at the clinic and all. I would love to here from you as you are probably going through the same issues as i am. I just cant beleive it wasn`t picked up while i was pregnant and i have a family history with CF. I have two cousins with cf one is 45 and one is 39 on my moms side and i didn`t even know i was a carrier, on my husbands side there is no one with cf as far as we know. I am trying to deal with the diagnosis every day, but most of the time all i have to do is look at my son who helps me be stronger because he is the strongest little man i know. Keep your chin up i have also been lurking this site for a while just to afraid to type anything.
would love to here from anyone
Donna
mum to bejamin with cf 6 months old
 
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anonymous

New member
I have 3 kids with CF. CF is VERY unpredictable.

My oldest has had mostly GI issues and weight gain issues. She wasn't diagnosed until age 12 after her younger sister was diagnosed. The younger sister is now 11 and has had mostly lung problems though her lung function is still excellent. The baby is 3 months and has been sick since birth, already grown several bacteria in his lungs and also has an unrelated liver condition. Each of my kids is proof of how much CF varies.

You also have to look outside the CFF sometimes. They only count patients seen at CFF accredited clinics and you would be surprised how many people....especially adults with CF...seek treatment with private practice docs or docs or unaccredited centers. SO while my youngest counts in those statistics, my older girls don't. And if the baby God forbid dies from his unrelated liver disease he will still be counted as a CF fatality by the CFF>

THere are also treatments that have helped my kids that the CFF does not endorse.

Yet they won't tell you Pulmozyme can worsen lung function in some patients or that the Clinic with the best outcomes uses mucomyst instead of pulmozyme

Off my soapbox
Cassidy
 
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anonymous

New member
That is interesting how all three of your children are effected so differently. We have been struggling with what to do as far as having a second child goes. We are 100% going to try the PGD procedure, but we only have the funds for one try. If that would not work we would be out of luck with that. I feel the joy my son has brought far outweighs the CF, but I do fear for the future and since no case seems to be alike who knows what could happen with a second child. So far, my son has no other issues besides the digestion, but I know it is inevitable that some day he will get a cold or infection and I am just so scared for that. We are not doing any breathing treatments right now either, and I am going to ask at his next clinic visit if/when we will start doing that. Ever since posting on here I have been feeling much better about this diagnosis. I really appreciate all of your kind words. I wish there was a way to save this thread because reading it always makes me feel better. (And maybe there is- I'm not that computer savvy.)

Thanks,
Carrie
 
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anonymous

New member
Hi! Carrie, My son had meconium illeus when he was born and was dx with CF after birth he also speand his first month of life at the hospital. My husband and I were very overwhelmed when the dc told us about cf. I remember like it was yeasterday that we where in the hospital with the baby and crying every day. I had the same feeling like you about other babys been born healthy. I have a friend that we where pregnent at the same time and she also had a baby boy but her son was born healthy, that made me not wanted to meet her baby or see her again because I fealt yellous. My son will turn One on thursday and now I see life different and enjoy every single minute that i have with him. I know is hard and you will feel confused but life goes on and you must enjoy your baby as much as you can. Give your baby lots of hugs and lost of love and you will see that been there for him is the beast thing that you can do. Dont give up he needs you.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Carrie,
I have two daughters, both with CF, and a nephew with CF. We live in Wentzville and go to St. Louis Childrens Hospital. Please let me know if you are interested in talking more. I will give you my personal email address and we can get in touch. I serve on the board for the St. Louis Cystic Fibrosis Foundation and am very active in the fund raisers here locally. What I like about being involved is that it makes me feel like I am doing all I can, after the crappy 'gift' of the cf genes that I and my husband gave our daughters...And you find that most of the people who are involved are so passionate about it because they are typically parents/siblings/or cf patients themselves. In a way, it is my therapy. Are you at Cardinal Glennon or Childrens?
Tammy
Mom to Kayla (8w/cf) and Hannah (6w/cf) and Aunt to Dalton (14 w/cf)
 
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Abby

New member
Hi Carrie,

I too was somewhat jealous of people with "healthy" children after my daughter was diagnosed. There were 5 women in my life that all had babies around the same time my daughter was born and when she was diagnosed at 5 months. Their babies were happy, healthy and fat. My daughter was struggling to breathe, skinny and mad all the time. We had a nickname for her "Crabby Abby". Of course, that "crabby" changed after diagnosis and she is a very happy child. I wondered myself if I would ever get past the CF part and truly enjoy my daughter and I did. You will too, just give it time. There are occasional days when I reel back from fear and anxiety over her future so I go somewhere private, cry and get over it. I have to believe that she will live a great life, no matter how long she's here and it's up to us as parents to make sure that life is happy for them.

Hang in there, it will get better.
 
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anonymous

New member
Jeanine,
We see Dr. Ferkol as well! He truely is the best! I have two daughters and both have CF and I have a nephew with CF as well. They all three see Dr. Ferkol. I have had the pleasure of spending the afternoon with Dr. Cannon and was very wonderful and knowledgable as also mentioned in the prior post. Are you at all involved in the CFF here locally?
Tammy, mom to Kayla (8w/cf) and Hannah (6 w/cf) and aunt to Dalton (14 w/cf)
 
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jaybird

Guest
Carrie,
Ditto what everyone else has said. I wanted to share my attitude toward parents whose kids do NOT have CF.....they're WIMPS! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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