3 month old with cf

[LuvLogan]

When my son was born at the end of june he was put into the NICU.
 He had a high white cell count, was lethargic, and wasn't
eating.  <br>
After 5 days of tests and seeing him in his little clear box with
tubes everywhere they released him with a clean bill of heath.
 The relief didn't last long.  At one month old, he still
had not gained back his birth weight even though he was eating 2
times the amount of formula than a normal baby.  The dr. did a
blood test and he tested positive with two different strands of cf.
 One common, one not.  My whole family was in shock.
 We had never heard of CF before, and my husband and I had no
clue that we were carriers.  This is our first child and my
parents first grandchild.  I left the dr that day with a
referral to the cf center at Stanford, and a feeling that my
newborn had just been given a death sentence.  He has been to
see the team at Stanford twice now, and we have learned a lot, but
mentally I am still struggling.  He has not had to many
problems yet.  His lungs have been pretty clear so far.
 He is having some problems with digestion and they have just
upped his creon to a full capsule, along with zantac three times a
day, and albuterol once a day.  Mostly I am questioning his
future, and I was hoping some of you as adults living with cf
or that have children with cf could help me out.  He has
not gotten sick yet, and I am living in fear everyday knowing
eventually he will and not knowing how his health will be affected
when it does.  He also wheezes a lot through his nose.
 Is that normal?  I'm scared for him.  Will his
quality of life be normal?  Will kids make fun of him?
 Will he develop normally? Any advise or anyone willing to
share their experiences would be greatly appreciated ! 

 

[DEES4]

Hi! Well let me start by saying that I have been where you are and I know what you are goung through. My son was diagnosed with cf at two weeks of age due to meconium ileus. He is our 4th child (we have three other children without cf). We had no idea we were carriers and no family history. We didn't even know what cystic fibrosis was. Our son is now 2 years old (he will be 3 in December) and he is doing great. I think he is doing better now then when he was a baby. I still have a very hard time with his diagnosis....I dont think that part gets any easier but I do know that he is a very normal 2 year old little boy. I dont think people will make fun of our children....no one even knows he has cf unless I tell them. I hope that you wont live in fear....just take one day at a time. I have really learned to do that. I am not going to worry about what might happen tomorrow or next week or even next year. I would drive myself crazy if I did that. Just love on your baby all the time and enjoy him and dont let these short precious baby months be lost on worry and fear. The future for our children is looking better then ever. And by the way...you will find lots of support here!
Carrie

 

[Abby]

I had the same worries about Abby as you do with your son. I didn't know if she would be able to ride a bike, play with other children, etc. That was before we learned what we do now. She is intelligent, a drama queen, active in everything from swimming, bike riding, ballet and anything else a 4 year old does. We tell people that are new to us and just hearing about cf that she is a normal child, it just takes a little more work to keep her healthy. The only thing that might be a "sign" of cf is that she is smaller than most children. I think she's at the 25th percentile for weight and 15th for height.

Hang in there, it will get better.

 

[anonymous]

Hi, I know what you are going through. My son was diagnosed on his first birthday and boy was I shocked. He weighed 14lbs at 1. MY son was our second child at the time. Two days later our first child was also diagnosed with cf she was two weeks from turning 5. It is still hard to talk about this time to this day. My daughter has never had to stay in the hospital, but my son has made up for it. I wish they were diagnosed sooner and did not have to suffer like they did. My daughter is in 4th grade now and is in the top 3 of her class. My son just started kindergarten and loves it. Know one really knows they have cf unless they see us giving them enzymes and ask or we tell them. They are a joy everyday and yes it is alot of work at times but well worth it. We have have had another child in Jan 2004 and she does not have cf nor is she a carrier. I know that it does seem to get easier as they get alittle bigger. My cf children are now 9 and 5. If ya need to talk just email me I try to check my emails everyday if I can.
www.burkhalter_95@sbcglobal.net
Jeanine Mom to Sydney 9 w/cf and mrsa and Trey w/cf and mrsa and Abbey no cf

 

[anonymous]

Hi. I can relate as well. Our son Aidan just turned two yesterday and we were shocked and devastated when he was diagnosed through newborn screening at 8 days old. I imagined the worst. But today Aidan is at the 90% weight and height and is a bundle of energy and laughter. He is a very typical child who takes a few extra medications and treatments. I still have my bad moments but they come less often now. I take each day as it comes and live for the best. Honestly, there is nothing we can do to change it so our only choice is to live it and live it well!

 

[Mommafirst]

I don't have any answers for your questions, as I am only a few
months ahead of you in this journey.  My daughter is 8 months
old and was diagnosed at 5 months.  So far she is doing great,
has not been sick and does not need enzymes.  She did have
that stuffily nose you talk about -- for the first four months,
maybe -- but it has gone away.  All I can tell you is that the
first month was a haze and I felt like this huge black cloud was
looming over me.  I am starting to adjust day-by-day, it does
get easier.  I imagine I will fall apart when she does get
sick and it feels like it all is hitting me in the face, but for
now we are getting by and living relatively normally.  The
things that were scary and overwhelming to me in the beginning
(cpt, "the vest" -- even though we don't have one,
clinic, etc.) are becoming more normal in my mind.  You just
adjust.  You love your child so much it fills your heart.
 And eventually, you can look at them and love them and not
think "CF CF CF CF CF".  Not a day goes by that CF
isn't a part of everything we do, and Alyssa isn't even showing
symptoms, but that is just how it will be.<br>
<br>
HUGS, you've come to a great place for information and support. It
is helpful to read and speak to some of the adult CFers on the
board, to see their beauty (inner and outer), intelligence,
strength, and even their struggles and pain.  I don't think
any of us want our babies to ever have the pain, but there is a lot
to be hopeful about -- you'll see some of it here.   The
road is not easy, but you will get through it and it will get more
bearable!!!

 

[folione]

I'm sorry to be welcoming you to this forum, but happy at how quickly you've grabbed CF by the horns to start learning about it and talking to others. My son w/CF is 3yrs 5months and just started preschool where he is definitely the alpha-male in the classroom. Having CF has in no way slowed down any of his developmental milestones except for size - he's around the 50% mark but spent most of his first 2 years closer to 15-25%.

One thing I'll add to what you've already heard: we've found that because we are so vigilant about his health and jump in with extra albuterol, etc. whenever he gets a cold that he ends up faring much better than his playmates. He has had far fewer and far less severe colds/bugs than any of his cohort. He has been in the hospital twice for pseudomonas, but never to the emergency room for croup or flu or gastroenteritis, etc. like many of his pals.

In short, he is unhindered by his CF and is currently as happy and driving us as crazy (& making us as happy) as any other toddler.

 

[ktsmom]

For what it is worth, here is what I am doing (less than a month
into my 3 year old's diagnosis):<br>
Take one day at a time.<br>
Read this message board to draw inspiration from families living
with this every day and to learn about the things you can expect in
the future (both good and scary).<br>
Allow yourself to grieve for the lost "normal" life that
you were planning on, BUT also embrace your "new" normal;
life for CFers and their families takes some extra effort but if I,
the queen of disorganized, can do it, you can too.<br>
This is a hard one - be grateful for the diagnosis.
 It was made so early in your child's life and there is
so much that can be done to treat and prevent symptoms.<br>
Seek help if you feel overburdened.<br>
<br>
My three year old is in preschool and has adjusted very well to her
treatment regimen. That comes from us - we have simply told her
that her body needs extra help to stay healthy.  <br>
<br>
There is no question this is a tough time and I will be pulling for
you!<br>
<br>
Dana<br>
Mom to Katy (3, with CF) and Kyra (6, no CF)<br>

 

[anonymous]

I just wanted to welcome you to the group. You have gotten great advice so far. You will become your child's best advocate. Try not to dwell on what could have been. Care of a CF child is time-consuming and stressful but there are rewards as well. My daugher, Maggie, is 3 1/2 with CF and has taught me so much about life and what is truly important.

Maggie has been very sick and she has been very well. Through it all she thoroughly enjoys her life. She has many friends is VERY outgoing and in fact it seems she is a leader and children are truly drawn to her. We do not hide her CF. She has done her treatments in front of her friends, nobody has thought it wierd and in fact most kids want a turn with her VEST. Looking at Maggie one would never know she has CF.

Now if I could take away Maggie's CF forever, of course I would, but I can't. We just enjoy the good times and work hard to make the bad ones not so bad.


Rebecca(mom to Sammy 8 no CF and Maggie 3 1/2 with CF)

 

[alwaysursamor]

As you can see you have alot in common with many women on this
site. Now how about a Cfers view and life.<br>
<br>
 I was diagnosed at 2 yrs old. From the time I was dx'd until
I was 12 I was pretty healthy lung wise. I did albuteral daily and
my mom did cpt 2x's a day. I also took enzymes. I was normal weight
at birth but I was skinny w/ a distended tummy growing up.
Eventually I was put on zantac. My biggest problem growing up was
sinus infections. I could never get rid of them. I have tried EVERY
medication out there and every nose spray. It has taken 15 yrs to
find the thing that worked.<br>
<br>
     At 12 is when the problems started.
My doctors sent me to a specialist and they decided I should have
sinus surgery. My first thought was wow I'll really be able to
smell and breathe through me nose. So they put my in 2wks prior for
a tune-up and did the surgery and kept me in for 1 more week after.
It was such a waste of time I could smell for 24hrs and then it did
nothing. My nose went right back to square one.<br>
<br>
    Well a couple of months past. I started to
get sick. So we went to the doctor and I had a lung infection... A
WHAT?!?!?! I have never had one... from then on it was one
infection after another. Orals or IV's, this med or that. my health
did worse. However this could have been to several factors.
 The surgery? maybe? How about puberty I was 12. then 13, then
14 and I still hadn't hit it yet. And as you knwo being a girl
thats a HUGE mile stone. They kept telling me when you hit 100 lbs
you'll start. WHAT!!! I had to gain 15lbs. I was already eating
constantly. Then it happened when I was 15 I started, One yr later
I got boobs and hips and went from boy to O YEAH!!! lol<br>
<br>
    But I was still struggling, and fighting. I
had to take 4 months out of school b/c i needed to have my
gulbladder out and I was really sick. Home school SUCKED. I was
also in my teens years and constantly fighting about doing my
treatments. Most kids refuse so be prepared now. And don't be
afraid to be strict. In 98 I decided to grow up my function was at
45% and I was tried of being sick I brought it back up to 95% then
I slacked off again.<br>
<br>
    I am 19yrs old I have a list of problems.
But I keep going. It is a constant battle but never give up, and
keep your faith in GOD ALWAYS!!!!   I am about to
get married, I live on my own, I have 2 dogs and a cat.<br>
<br>
    Yeah I got made fun of in school like most
kids. Growing up was tuff it was always a constant battle for
insurance. And I always thought my parents fought because of me.
DON'T FREAK OUT. It will be tough but god never gives you more than
you can handle. It will always seem like when you get over one
hurdle there will be another. Read and learn and don't be afraid to
ask questions. Also remember you know your kids  better than
any doctor. If you think something is wrong it usually is. EVERY
CASE of CF is different.<br>
<br>
Sorry if this was to long but I hope it helped.<br>
<br>
     <br>

 

[tammykrumrey]

Welcome to a group of great people. There are so many people that can give you such great advice. Sometimes things that I never thought of get brought up here, and then I walk away with some knowledge that I may not need immediately, but will always have it. My younger daughter just cultured Psuedomonas for the first time last week, and I know her Dr. was completely shocked when I asked if it were mucoid or non-mucoid Psuedomonas. I learned it all here, and new what questions to ask. As someone else said, you are your childs best advocate.

I have a 15 year old nephew with CF. He was dx at birth. I knew I could carry the CF gene, but since no one in my husbands family had it, I wasn't all that concerned about having a CF baby. It actually never even crossed my mind! How crazy is that!!??

My older daughter, Kayla, was doing ok as a baby. Looking back, she had a lot of symptoms, but the pediatrician kept telling me it was milk allergies, or that she was spoiled (and that is why at 14 months old she was still getting up for a bottle in the middle of the night) or that I was giving her too much juice (that is why she was having 10 bowel movements a day and her butt was raw!-and I wasn't giving her juice at all!) This was also my nephews pediatrician, so you would think he would want to at least rule out CF seeing the fact my daughter had so many symptoms, but nooooo. He sent me home feeling like I was doing all these things wrong. My sister had suggested to me to have her tested when she was about 1, but I said she was just petite, and that the dr. hadn't suggested it, so she should be ok. At 14 months, she had a rectal prolapes and was sent to the hospital via ambulance and I was then told that she needed to be tested for CF. I was in denial. After all we were just at the pediatricians office that day, and he sent me home with ointment for her raw butt because I was spoiling my child and giving her too much of something!
The next day she was tested and it came back positive. I was 5 months pregnant with my second daughter at the time. Hannah was tested at birth, and dx at one month.
Yes, it is a shock! It was when my nephew was born, and we had never heard of CF, just like your family. And it was when my daughter was dx, and I knew a lot about CF. And the news of my second daughter was just as devastating as the first.
But they do develop normally. Kayla is in 3rd grade, and is making straight A's. Mostly A+'s, my daughter is a perfectionist and can't stand any less<img src="i/expressions/face-icon-small-smile.gif" border="0"> And Hannah is in 1st grade and doing awesome!! They don't get grades in 1st, but is doing perfect. Today is her 7th birthday!!! They do cheerleading, gymnastics and play like all the other kids. They wear me out!
We do daily routines of CPT with the Vest, Kayla takes Pulmozyme and Hannah is on Tobi via the nebulizer. Both girls take enzymes and Prilosec and vitamins. Both are right under the 50% for weight, and one is 25% for height and one is about 15% for height. They are just great!
They do get sick, just like all the other kids. We just treat them more aggressively than non-CF kids. We go to CF clinic 4X a year, more visits to clinic when we are sick. I hardly ever see our pediatrican (a different one than that which I spoke of earlier-I never let him see Kayla again, and switched before Hannah was born)-only for annual check ups, vaccines and flu shots. I always call CF clinic for everything.
I think about CF almost ever waking hour. It's hard not to. But I don't dwell on what can happen. I think positive about their future, and teach them to do the same. My husband is the worrier, so I have to be the opposite, <img src="i/expressions/face-icon-small-smile.gif" border="0">
You are already taking great steps in caring for your little guy! What a great mom you are!

 

[thefrogprincess]

Hi! Welcome to the forum, I hope you find the support you are looking for here, this is a great resource for you!

That being said, I am 24 years old, diagnosed at birth after my older brother was diagnosed at about 3 months (mom was already preggers with me when he was diagnosed). While everyone is affected differently by CF I want you to know that it is not always severe. I have always been able to do anything that anyone else could, while fitting my treatments in between. I was a hard core athlete all through school, and still bike and work out often. I do tend to get cold more often than most people, and when I do it takes me a little longer to beat it. But I understand the importance of taking care of myself and I know my limits. I just want you to know that a CFer can run and play, have friends, grow up, go to the prom, graduate high school, go to college and have a normal life just like anyone else!

As for being a CF parents all I can tell you is that it is best to always be honest with your sone. I don't remember a time where I didn't know that I have CF and that I was different from other kids in that way. But my parents never treated me like I was different. I was involved in my health care from a very young age, they taught me that my docotors don't know what's best for me, only I know that.

 

[thefrogprincess]

Hi! Welcome to the forum, I hope you find the support you are looking for here, this is a great resource for you!

That being said, I am 24 years old, diagnosed at birth after my older brother was diagnosed at about 3 months (mom was already preggers with me when he was diagnosed). While everyone is affected differently by CF I want you to know that it is not always severe. I have always been able to do anything that anyone else could, while fitting my treatments in between. I was a hard core athlete all through school, and still bike and work out often. I do tend to get cold more often than most people, and when I do it takes me a little longer to beat it. But I understand the importance of taking care of myself and I know my limits. I just want you to know that a CFer can run and play, have friends, grow up, go to the prom, graduate high school, go to college and have a normal life just like anyone else!

As for being a CF parents all I can tell you is that it is best to always be honest with your sone. I don't remember a time where I didn't know that I have CF and that I was different from other kids in that way. But my parents never treated me like I was different. I was involved in my health care from a very young age, they taught me that my docotors don't know what's best for me, only I know that.

 

[thefrogprincess]

Hi! Welcome to the forum, I hope you find the support you are looking for here, this is a great resource for you!

That being said, I am 24 years old, diagnosed at birth after my older brother was diagnosed at about 3 months (mom was already preggers with me when he was diagnosed). While everyone is affected differently by CF I want you to know that it is not always severe. I have always been able to do anything that anyone else could, while fitting my treatments in between. I was a hard core athlete all through school, and still bike and work out often. I do tend to get cold more often than most people, and when I do it takes me a little longer to beat it. But I understand the importance of taking care of myself and I know my limits. I just want you to know that a CFer can run and play, have friends, grow up, go to the prom, graduate high school, go to college and have a normal life just like anyone else!

As for being a CF parents all I can tell you is that it is best to always be honest with your sone. I don't remember a time where I didn't know that I have CF and that I was different from other kids in that way. But my parents never treated me like I was different. I was involved in my health care from a very young age, they taught me that my docotors don't know what's best for me, only I know that.

 

[angelas]

Just wanted to write. I was 19 when I had my daughter and we found
out when she was 5 days old. I know everything that you are feeling
right now. That was in 1983 so they told us that she would only
live to be 3. Well she beat that by 20 years. Only times in the
hospital were at 7, 11, then 16. She did not really have problems
until she was 21. She lived a mostly normal and happy life.
Graduated high school, bought a house, got married, had a dog. She
was always small growing up but that was it. There are so many more
advances in treatment now. The only advice that I can give is that
if you have a positive attitude so will your child. That makes all
of the difference! Treat them normal and they will be normal! Best
of Luck.

 

[angelas]

Just wanted to write. I was 19 when I had my daughter and we found
out when she was 5 days old. I know everything that you are feeling
right now. That was in 1983 so they told us that she would only
live to be 3. Well she beat that by 20 years. Only times in the
hospital were at 7, 11, then 16. She did not really have problems
until she was 21. She lived a mostly normal and happy life.
Graduated high school, bought a house, got married, had a dog. She
was always small growing up but that was it. There are so many more
advances in treatment now. The only advice that I can give is that
if you have a positive attitude so will your child. That makes all
of the difference! Treat them normal and they will be normal! Best
of Luck.

 

[angelas]

Just wanted to write. I was 19 when I had my daughter and we found
out when she was 5 days old. I know everything that you are feeling
right now. That was in 1983 so they told us that she would only
live to be 3. Well she beat that by 20 years. Only times in the
hospital were at 7, 11, then 16. She did not really have problems
until she was 21. She lived a mostly normal and happy life.
Graduated high school, bought a house, got married, had a dog. She
was always small growing up but that was it. There are so many more
advances in treatment now. The only advice that I can give is that
if you have a positive attitude so will your child. That makes all
of the difference! Treat them normal and they will be normal! Best
of Luck.

 

[anonymous]

Thank you all so much for the support and the stories you have shared with me. It is so nice to be able to talk to a community of people who are in the same situation as I am. I have a ton of family support, don't get me wrong, but it's not as easy to explain what my husband and I are going through with them as it is with people who have been there. I have spent the last month being so angry at this disease, myself, life, and to be honest God. My husband and I are young (24). We started dating in Kansas in junior year, and moved here to California when we graduated to be closer to my family. We waited till we were ready to get married. We got our own place, and saved money for 2 years before we decided to try for a baby. (Due to nicu and dr.s bills we have gotten so far that money is long gone!) We have always tried to be good honest people and go to church, and we are very family oriented. We did everything "right". I felt like how could he do this to us and our son after all the effort we have always put in to be good people. Now we had a son that could die before we did. I know how awful this sounds, but that is how I felt. Now I see that it has nothing to do with how good a person you are. There are much better people than us on this site that are going through a whole lot more.
The day after I wrote my first note on here and started reading about others in our position I just broke down. I cried for hours. I know it's not god's fault, or mine, or my husbands, or anybody's fault. We are so lucky to have Logan in our lives no matter what. I just want to help him grow and have an amazing life with whatever time, health, or resources we have. I know that some things will be difficult, but I am going to try like hell to be whatever he needs me to be at different points in his life. I'm happy to know that he will still be able to be a normal active kid. I want to give him the best life possible. I want him to grow up understanding what cf is and knowing how to care for himself, but that he can do and be whatever he wants and not to feel hindered by it.
I know as we go on I will have more breakdowns, but I also know that now I have a place to go where people truely understand. Thank you so much for letting me speak out, and for sharing your experiences with me. I plan on learning as much about cf and the people who have it as I can so I can help my son, and maybe help others someday as you are helping me.

 

[anonymous]

Thank you all so much for the support and the stories you have shared with me. It is so nice to be able to talk to a community of people who are in the same situation as I am. I have a ton of family support, don't get me wrong, but it's not as easy to explain what my husband and I are going through with them as it is with people who have been there. I have spent the last month being so angry at this disease, myself, life, and to be honest God. My husband and I are young (24). We started dating in Kansas in junior year, and moved here to California when we graduated to be closer to my family. We waited till we were ready to get married. We got our own place, and saved money for 2 years before we decided to try for a baby. (Due to nicu and dr.s bills we have gotten so far that money is long gone!) We have always tried to be good honest people and go to church, and we are very family oriented. We did everything "right". I felt like how could he do this to us and our son after all the effort we have always put in to be good people. Now we had a son that could die before we did. I know how awful this sounds, but that is how I felt. Now I see that it has nothing to do with how good a person you are. There are much better people than us on this site that are going through a whole lot more.
The day after I wrote my first note on here and started reading about others in our position I just broke down. I cried for hours. I know it's not god's fault, or mine, or my husbands, or anybody's fault. We are so lucky to have Logan in our lives no matter what. I just want to help him grow and have an amazing life with whatever time, health, or resources we have. I know that some things will be difficult, but I am going to try like hell to be whatever he needs me to be at different points in his life. I'm happy to know that he will still be able to be a normal active kid. I want to give him the best life possible. I want him to grow up understanding what cf is and knowing how to care for himself, but that he can do and be whatever he wants and not to feel hindered by it.
I know as we go on I will have more breakdowns, but I also know that now I have a place to go where people truely understand. Thank you so much for letting me speak out, and for sharing your experiences with me. I plan on learning as much about cf and the people who have it as I can so I can help my son, and maybe help others someday as you are helping me.

 

[anonymous]

Thank you all so much for the support and the stories you have shared with me. It is so nice to be able to talk to a community of people who are in the same situation as I am. I have a ton of family support, don't get me wrong, but it's not as easy to explain what my husband and I are going through with them as it is with people who have been there. I have spent the last month being so angry at this disease, myself, life, and to be honest God. My husband and I are young (24). We started dating in Kansas in junior year, and moved here to California when we graduated to be closer to my family. We waited till we were ready to get married. We got our own place, and saved money for 2 years before we decided to try for a baby. (Due to nicu and dr.s bills we have gotten so far that money is long gone!) We have always tried to be good honest people and go to church, and we are very family oriented. We did everything "right". I felt like how could he do this to us and our son after all the effort we have always put in to be good people. Now we had a son that could die before we did. I know how awful this sounds, but that is how I felt. Now I see that it has nothing to do with how good a person you are. There are much better people than us on this site that are going through a whole lot more.
The day after I wrote my first note on here and started reading about others in our position I just broke down. I cried for hours. I know it's not god's fault, or mine, or my husbands, or anybody's fault. We are so lucky to have Logan in our lives no matter what. I just want to help him grow and have an amazing life with whatever time, health, or resources we have. I know that some things will be difficult, but I am going to try like hell to be whatever he needs me to be at different points in his life. I'm happy to know that he will still be able to be a normal active kid. I want to give him the best life possible. I want him to grow up understanding what cf is and knowing how to care for himself, but that he can do and be whatever he wants and not to feel hindered by it.
I know as we go on I will have more breakdowns, but I also know that now I have a place to go where people truely understand. Thank you so much for letting me speak out, and for sharing your experiences with me. I plan on learning as much about cf and the people who have it as I can so I can help my son, and maybe help others someday as you are helping me.