8 month old has CF

Melissa - posted on 01/11/2009 ( 18 moms have responded )

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Hi there. I am a 28 year old single mommy to four children age 12, 8, 3 and 8 months now :) My son Phoenix was diagnosed with CF when he was 4 weeks old. He was one of two babies that were the first in Ontario to be tested positive for CF threw the newborn screening test. He is doing good with a few set backs. However looking for people to chat with about it and the tough times that you need to get threw to over come everything. Take care and very happy i have joined this group!!



Melissa

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Gillian - posted on 01/30/2012

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I used to put the enzymes on my finger, into my baby's mouth and then quickly start nursing--she got used to it quickly and it worked great--within a few weeks she was wonderfully round cheeked and doing great. She nursed for four years and I still think that that is why she had so few health issues and no hospitalizations--the doctor once examined her and said, What is she eating, this is great! Breast milk I said, cringing, thinking they'd get on my case as she was three...they said breast milk is the golden standard and the best stuff for keeping respiratory infections under control!

Jamie - posted on 04/09/2010

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Sorry to hear about your baby Veronika. Its very scary and also very important to start treatments as soon as possible to keep the lungs clear. Good luck.

Veronika - posted on 03/05/2010

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Hi! My name is Veronika.I have a 1 month old who was diagnosed with cf this week. We are not getting any treatments cause there are no simptoms or issues. Yet...We were diagnosed through newborn screaning. It is all so scary and I have no family here for support. I hope this group will help.

Melissa - posted on 02/18/2010

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So yes my son started the apple sauce with his enzymes at four weeks old and took it right away. They use this method with all of the CF newborns and babies as it is easier to get it down:) Its worked for us since day one:) Take care!

Cindy May - posted on 02/18/2010

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i thought newborns digestive system wasn't developed enough to handle 'real food' will try the apple sauce on my paed and see what he says. it would be easier if i could use something sticky like apple sauce otherwise she just spits up the milk and with it the creon.
good luck with your birth.
CM

Kirby - posted on 02/04/2010

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My son started enzymes at six weeks and we always gave them to him with a little bit of applesauce. I don't remember having any major issues with that and think I was actually surprised at how a baby that young could handle "real food." I am due to have a daughter with CF this spring and my son's doctor said we could just start the applesauce + enzyme regimen as soon as she needs them, so it must work for kids newborn and up. Glad you're in the group with your daughter at such a young age. It took me a while to want to emotionally connect with other people dealing with kids with CF. I think we have some interesting discussions and it's just a nice place to vent or find someone going through the same thing as you which sometimes is simply enough to help get you through the day. Hope you and your little girl are doing well.

Cindy May - posted on 02/04/2010

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hi there.
Jasmine our baby girl (5 weeks ) has CF. everything is very new for us i don't even know what questions i want to ask other people who have had babies with CF. what are the tricks to giving enzymes? my Paed said with expressed Breast milk and in a spoon - which has made for some wonderful messes and coughing.
Cindy May

Jamie - posted on 12/02/2009

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Im sorry about your son. My daughter was finally diagnosed at 11 months, after her doctor told us that he did not know what was wrong. I finally found a doctor who cared enough to run some test and figure it out. She weight 10 pounds at 11 months. It was very scary. All is well know and trying to keep her for getting sick this winter. I keep pushing her to do extra treatments becouse winter is here and she always strugles threw the winter. My prayer are with you, God Bless..

Aimee - posted on 02/06/2009

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hay aimee here its just so wonderful 2 b able 2 talk 2 sum1 else who is in same situation great 2 hear alex is really good after his clinic visit. um breana goes 2 clinic every 3 to 4 months and at clinic she gets weighed her height done she has only eva had cough swabs 2x so far she has been hospilised 1x 4 tune up which was really scary at start but nw that ive learnt 2 do it we only have to be in hospital 2 get line put in then hme 4 2 weeks iv antibotics and line removed again. At clinic at our last visit they decided 2 do iv every year before winter just 2 give her a boost so in may this year we away 4 a tune up. we live 45mins from Dunedin city which is where Breanas clinic is so its not 2 far. how often does Alex go 2 clinic? do u do physio everyday? does Alex have 2 take enzymes with every meal or creon? its so awsome 2 talk with other mums im loving it im so glad i workd out how 2 use computer haha

Kirby - posted on 02/06/2009

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Hi Aimee!  It's great to hear from you and to hear that Breana is doing very well.  My son Alex just went to clinic yesterday and gained like 2 pounds and his lungs are great.  We just have to wait on the culture results.  I'm very curious how they do things where you live.  How often does Breana go?  How far do you have to travel?  Do they do throat cultures at every visit?  I'm glad you have a great, trustworthy CF nurse.  They can make all the difference.  Education really is key to fighting this disease.  It's empowering for me and makes me feel like I have a little bit of control over something that sometimes can be so overwhelming.

Aimee - posted on 02/06/2009

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hi there my names aimee and my daughter breana has cf she was diagnosed at 8 weeks we live in new zealand in a country twn cald milton. it was so scary when we found out our angel had cf i didnt have a clue wat it was thanks 2 a great cf nurse we know alot now. breana is nw 17 months and doing realy good

Kirby - posted on 01/22/2009

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Hi Melissa!  Good to have you in the group and glad to hear Phoenix is doing well.  It's nice to share the good things as well as when things get rough.  Your message made me remember that is important too.  I hope we will all take the time to comment about what our little ones are doing, those wonderful milestones, etc. as well as when there are problems and we just need to vent or hear that someone has been through a similar thing before.  Take care to everyone...



Kirby

Melissa - posted on 01/20/2009

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Two weeks ago we went to Sick Kids in Toronto and they told us that he has only gained 1 pound 3 ounces and 3 cm since our last visit 3 months earlier! So he is on canola oil now 1/2 teaspoon everyday to fatten him up hopefully!! Since Oct he has been on his compressor which he inhales tobramycin once in the morning and at night after his thearpy. It is sure a struggle doing it all sometimes but it for the best of course and his brothers and sister are big helpers also:) My family is over an hour away and i do not have many friends so i do not have much support that way however i manage.I wish i did not have to send him to daycare when i go back to work in April however being a single mother of 4 i really do not have much of a choice. I am in Ontario about 3 hours from Toronto. Little place called Huntsville in Muskoka. Anyways Phoenix is doing great just have to get some weight on him. He will have a lung test on the 31st of March when we go back to Sick kids  so looking forward to seeing how that goes. Since Christmas he has got 4 teeth, started pulling himself to standing, crawls EVERYWHERE and puts his hands to me when i ask if he wants up:) It is very exciting and he is quite the special little man just like all of the rest of my angels:) I better run for now but will keep in touch. Take care and have a great day!!!



 



Melissa

Megan - posted on 01/19/2009

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Where in Ontario do you live? I live in Northern Michigan and my son who is almost 4 wad diagnosed at 8 months old. My husband and I look at that as good and bad. We started treatments immediately, and he is growing beyond means. Since you have been doing the treatments and medical things for about 7 months now you probably have that pretty much under as much control as u can right now. Since he was diagnosed we have been through many doctor visits and 5 hospital stays for "tune-ups" and Sinus sugeries. We have a 6 and 14 year old as well and our 14 year old daughter is a great help and has been since his birth with helping with his treatments. He does them better for her and also relieves me of some of the pressure when he cries from not wanting to do it AGAIN! I hear that alot lately. We go to Devos Children's hospital in Grand Rapids to Dr. Schuen and he is amazing. Kurtis is growing, gaining weight, and doing great. He does have the moments of cold/cough/ and not being able to go to preschool/childcare which we own, thank goodness it is not in our home. Do you have your parents around or friends that are there for talks and helping hands? That helps me out a lot due to my husband being a firefighter and gone a lot.
If you ever need to talk I am on here almost everyday. take care and let me know how things are going. They will give you a run for your money both mentally and physically, and each day seems like a new hurdle whether it is big or very very small to overcome, but once you get over that one, it is one step further in the progress.
Take care.

Melissa - posted on 01/12/2009

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And WOW Elizabeth 7 years old...that is crazy!!!! Too bad they did not catch sooner :(

Melissa - posted on 01/12/2009

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Wow really that is weird cause Phoenix was diagnosed just less then a month after they added the newborn screening :) Eveyrthing happens for a reason and thank god for that test!

[deleted account]

Welcome Melissa. My son, Samuel, was diagnosed through newborn screening in Arizona. The law went into effect on November 1, 2007, the day we left the hospital. 2 weeks later we learned of his diagnosis. It's not easy having the rug pulled out from under you but finding out early has been such a blessing! Congratulations on your handson son!

Elizabeth - posted on 01/11/2009

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I am sorry to hear about ur Son... My daughter was diagnosed when she was 7 years old, she is now 12... In the beginning she was always in the hospital.The Dr.'s always said it was asthma...After 25 times at the Dr office in one year I demanded answers. She is doing well, the weather here in Illinois sucks for her, but all is well...



 



You can drop me a line anytime and we can chat..God Bless you and your kids....



                                                                                                            Elizabeth :)

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