Cystic Fibrosis diagnosis — The Bump
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Cystic Fibrosis diagnosis

Just wondering if anyone has any experience with CF? My almost 3 week old just tested positive for CF by means of a sweat chloride test. I know a little about the disease, and we have our first appointment set up with Children's Hospital next week, but I'm wondering if anyone can give me some info about what to expect in the next year or so? TIA!

Re: Cystic Fibrosis diagnosis

  • Sorry to hear you're dealing with a new diagnosis, but it's great you're getting some help so soon.  I suppose with any Dx you can expect you'll have quite a few doctor;s and specialist appoinments. You'll read a lot (please remember not everything you read wil apply to your little one) and you'll become an expert in what you need to be.  You'll be the best advocate you can be for you LO and will learn you are both stronger than you ever thought. 

    You may want to put together some kind of binder for all your information/lab results/health insurance etc.  You may also want to keep a notepad in your purse/diaperbag. You'll get a lot of information - please don't be afraid to ask the doctor's to write down anything they say.

    One of my good friends has CF...she's a Mom of 2 and a Physician's Assistant.  Aside from the occasional bad day or days - you'd never know she had CF.  Best to all of you.

  • Hello!  I too wanted to say I'm sorry you are dealing with this diagnosis, but I wanted to give you a bit of hope.  CFis not the difficult diagnosis it used to be.  My husband's cousin has CF and is 25 and lives a completely normal life.  :-)

    I don't have any advice about what to expect, except that you can probably expect a lot of doctors appointments and therapies.  I do think its wonderful your LO was diagnosed so young and you are able to seek therapies so early.  That will help your LO immensely! 

     Best of luck to you both!

    TTC since January 2010
    BFP 5/9/10. U/S - no heartbeat 6/2/10 (7 weeks). Induced miscarriage 6/7/10.
    Chemical pregnancies 12/2/10, 1/3/11, and 2/7/11.
    dx: RPL due to poor quality uterine lining; begin progesterone January 2011
    BFP 3/10/11. EDD 11/19/11. E arrived 11/15/11!

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    Hi, sorry to hear you are going through this. My ds has CF and we found out the same way as you so I can relate to how stressful the unknown is. Once you meet with the team and they do labs and testing you will have a better picture of what you kind of symptoms your baby will have and the treatments you may end up having to do (the two main things affected are digestive and lungs). My ds is 27 months and his CF symptoms are mild so the most we have had to do is neb treatments and antibiotics with colds. I think the hard part of this is not knowing what the expect. My ds was also born with a cleft lip/palate and we had more definite answers with that on what to expect but with the CF I feel like it is a waiting game. For me the best thing I have found is to take one day at a time and be thankful he is healthy.

    Heather
  • Thank you so much ladies. I love that there is a place like this where we can find support from perfect strangers!
  • I am so sorry to hear about the diagnosis.  My 23 month old nephew was diagnosed with CF when he was 2 1/2 months old so we have learned more about this disease that we ever wanted to.  The progress being made is INCREDIBLE and they are VERY optimistic about the future.  The first few visits with the hospital were overwhelming for my sister/ brother-in-law, but within a few weeks, the treatments just become a part of your life.  Looking at my nephew you would NEVER know that he was anything but a healthy little boy.  My biggest piece of advice is to remain optimistic and hopeful, I truly believe that it can make all the difference.  Obviously there will be good days and bad days, but from the research being done, there will definitely be more good days ahead!

    The two best resources for our family have been www.cff.org and www.cysticfibrosis.com.  The CFF website can keep you informed about news, medicine they are working on, etc.  The second website has places to talk to other parents about their experiences, advice, like a support system.  Every year in May, we do the Great Strides Walk and it is SO AWESOME to meet other people going through what we have gone through.  We met 50+ year olds that continue to live a relatively normal life.  It is such a positive experience so I would definitely recommend it! 

    My sister is now on a panel for CF and is always willing to answer questions, listen to fears, etc. so if you ever need someone to talk to, please PM me and I will give you her email address.

    Sending good thoughts and prayers!

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  • image akimbo:
     You may want to put together some kind of binder for all your information/lab results/health insurance etc.  You may also want to keep a notepad in your purse/diaperbag. You'll get a lot of information - please don't be afraid to ask the doctor's to write down anything they say. 

    Yes - a binder!!! this is helpful when you start seeing multiple doctors! my friend has one for her 4 year old (actually now 2-6inch binders) and keeps every clinic note, copy of labs, etc in it. it's easy when bouncing to specialists or the PCP to get the info right at their fingertips. when she leaves she has the doctors fax everything back to her after each appt so she can add it.

     

     

  • My DH has CF.

    - The clinic will (or should) push for genetic testing.  There are new meds in the pipeline (cff.org) that are mutation specific.

    - If you have other children - they need to be tested too.  I don't know what your clinic would recommend, but I would go with a genetic screen once you know your baby's mutations - that way they can just look for those.

    - Pass the mutation information along to family - for carrier screening.

    - If you look into having more kids - look into IVF/PGD.  That's what DH are doing to avoid CF in our kids (see sig).

    - I'm not going to lie.  It's not a picnic.  It's not a normal life.  There is nothing normal about having to devote a great deal of time to medical treatments.  However, you can make it work.  DH and I went backpacking for our honeymoon - I did manual PT and we carried a battery operated nebulizer.  We go on camping trips - you just make time and space and figure out power requirements as you go.

    - Things you'll probably need to know about:

    Husband has cystic fibrosis. I'm a carrier. We did TESE, IVF, ICSI, and PGD. After two failed IVFs, we were blessed with our twins.

    Lilypie Premature Baby tickers
  • My DH has CF.

    - The clinic will (or should) push for genetic testing.  There are new meds in the pipeline (cff.org) that are mutation specific.

    - If you have other children - they need to be tested too.  I don't know what your clinic would recommend, but I would go with a genetic screen once you know your baby's mutations - that way they can just look for those.

    - Pass the mutation information along to family - for carrier screening.

    - If you look into having more kids - look into IVF/PGD.  That's what DH are doing to avoid CF in our kids (see sig).

    - I'm not going to lie.  It's not a picnic.  It's not a normal life.  There is nothing normal about having to devote a great deal of time to medical treatments.  However, you can make it work.  DH and I went backpacking for our honeymoon - I did manual PT and we carried a battery operated nebulizer.  We go on camping trips - you just make time and space and figure out power requirements as you go.

    - Things you'll probably need to know about:

    Enzymes - medication to help digest food

    Nebulized meds - medications put into aerosol form to get direct access to the lungs.

    Chest PT - "Beating" - helps to clear mucus in the lungs

    The Vest - once your little one is bigger, for chest PT

    - Even if you aren't seeing symptoms now - proactive treatment is the way to go.

    PM me if you have questions.

    Husband has cystic fibrosis. I'm a carrier. We did TESE, IVF, ICSI, and PGD. After two failed IVFs, we were blessed with our twins.

    Lilypie Premature Baby tickers
  • Hi there. I don't have an SN child, but frequently read the posts on this board as I am a teacher and can sometimes teach SN students.

    I have a friend who has CF. She went to college on a full ride scholarship for cross country running. She was active in our sorority and my church. She also has a 2 year old son with her husband, and was blessed with a healthy, "normal" pregnancy. She's doing exceedingly well, working part time and raising her son, still active in church and the community. She still runs long distances daily!

     

     

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  • Our DS was diagnosed at birth with CF via the PKU heel stick. It was a big shock to us but one that we are dealing with everyday. I knew something wasn't right when he was born and felt better knowing what it was.

    It's hard sometimes but the CF specialists are wonderfully supportive and have many resources for parents to get support and information on. We've met with the respiratory therapist, nutirionist, financial planner/assistant.

    Keeping a binder is a great idea. We recieved one from the specialist and found it very useful to add things into it and make it much more personal to our needs.

    Our son JJ is doing very well and gaining weight - that's a big issue with CF children. They are constantly hungry and with the enzymes it's much easier for them to get what they need from feedings. If you can, breastfeeding him is the best but formula is easy to.

    Just remember, you are allowed to grieve about this diagnosis. My biggest fear was if he was in any pain or if CF caused pain to him. We met some amazing families the first week of being with the specialist. We saw children at ages 18 months, 4 years, 11 years and 25 years old who have CF and you'd never know it.

    Another thing is you need to be vigilant about germs, colds, flu, etc. Lots of hand washing and hand sanitizer at hand. Also keep sick people away from them if possible. I know that one is difficult but it takes my DS a little longer than normal to feel better.

    Remember your child is first and formost in your life. The CF doesn't make the child any different than anyone else. Enjoy your baby and love them!

    PM if you have anymore questions.

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