Two small children with CF

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JKoroskenyi
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/26/2008 4:37 PM (GMT -7)   
sad  I have two young boys with CF.  I have a two year old and a three month old.  The older one didn't really have too many problems except pyloric stenosis.  The youngest one has had it rough.  He was failure to thrive.  He had a g-tube put in when he was two months old and has had pnemonia twice already.  I feel like the world is caving in and I feel like I did this to them.  It is so hard seeing them like this.  The youngest has been through so much and i don't know how much more he can take.  Please someone give me some encouragement.  Does anyone have young children with it or did they have young children with it?  How did you cope?

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/27/2008 6:16 AM (GMT -7)   

Welcome to the board.  I am Kitt and I do not have CF but I have known friends who have raised children from infancy with CF.  First of all you are a wonderful Mother, and you did not bring this on your children so please do not blame yourself.  It is a disease and why do bad things happen to good people?  I do not know but I know your a good person.

Please read throught the topics on here and I am sure someone will be along to visit with you that has more knowledge on this topic then I do.  I am glad you are reaching out for help.

I am going to post a couple of links for you that may be helpful.  God Bless and know we care.

http://www.healingwell.com/pages/Cystic_Fibrosis/Organizations/

http://www.healthboards.com/boards/forumdisplay.php?f=41&order=desc

Warm Hugs
Kitt



 
Kitt, Moderator: Anxiety ~ Panic 
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/28/2008 11:56 AM (GMT -7)   
Hi there, welcome too healing well.
 
I am Gemma age 22. I am not a parent, though do have CF myself. All I can say is, it does start too feel normal, and it does get easier.
Please, try not too blame yourself, you didn't purposely inject your children with the CF gene, you had no way of knowing that this was going too happen.
 
I was also faliure to thrive, speaking too my mum, she has told me how things were when I was born. For two year's I didn't grow/put on weight, had a thousand problems with prolapsed bowels and a lot of chest infections. She kept gettingsent away from doctors, saying things were all in her head. Eventually just after my 2nd birthday, they did a test for CF and prooved positive.
 
about a year after starting to get proper treatment, I started too get better.
All I can give is my view on how things have gone for me. I also have clinical depression and have suffered badely with it for years, much more thna cf has ever effected me. However, even though the CF can be rubbish, something must be good enough in my life, to stop me killing myself. Soem parts of my life are still normal enough, for me too function normally. even when things are at there worst.
 
CF brings with it fighter's spirit, it's built into chromosome 7, and is the twin of CFTR. I can't speak for myself, as I don't see myself as brave or anything I just think I'm a scardey cat in all honesty. But every single one of my CF friends have the spirit to go on fighting and get over things. Your sons will have this too.
 
This is said a lot, and to be honest, for me this statement is getting boring really, but still it's true.
Research has come a long long way, and there is still so much more too be found. In 20 years the average life expectancy has jumped from 2 to 5 to 12 to 21 to 31 to 40.
 
Life with cf maybe tough at times, but it makes the small good things really exciting. The really exciting things to the point of exploding i think.
 
I hope there are some mother's along soon. I can speak of a view of CF, and how I feel about my nephew who doesn't have CF. I know fo me, even knowing everything about life with CF, nothing would settle me if I found out he had it.
 
I hope some of this has touched on what you needed to hear.
Keep well, and stay strong. Your sons will thank you later on in life, if you can teach them strength now.
 


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/4/2008 4:17 AM (GMT -7)   
JKoroskenyi,

Just sending you a message to see how you're doing. I'll try and get back on MSN soon, lots has been going on since I spoke too you the other day. I've been very spoilt. Don't know why though, it's not like I was dying in hospital or anything, it was all normal and routine. It meant I got too spend time with my friends too. The nurses have missed me that much, the first thing they did was ask for my facebook address so they can keep in contact. It's great to be loved lol.

Anyway, preparing myself for appointments and college and mentor training starting this week. So, may not be online so much.

Hope you're all ok,
Gem


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


3boys
New Member


Date Joined Jul 2008
Total Posts : 6
   Posted 7/8/2008 8:35 PM (GMT -7)   
Hi, 
 
How did you get a confirmed diagnosis?  Was it just through a sweat test or blood?  I have a nephew that failed his sweat test last week it was 49 then 61 on the second time.  My pediatrician wanted me to get my boys tested.  I have a 7 week old, 5 year old and 3 year old.  My  week old had a newborn screening and he was normal.  My 3 and 5 year old had the sweat test today and they both tested borderline with 44 and 47 being the scores.  All three my nephew and my boys are healthy.  I just don't understand.  Please tell me what kind of test was used for your diagnosis. 

hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 7/16/2008 3:26 PM (GMT -7)   

i just turned 24 i had my baby when i was 17,GYPSY.when we were sent 2 crumlin i was callin it statistic fibrosis i had'nt a clue. (i still dont have a clue) i thought it was the end of my world,it feels so bad when your lyin over your baby gettin canulas in,i could talk 2 u about all the bad things that happened to gypsy and we as mothers feel, but at the end of the day my baby is 6 now and she is the best thing that ever happened to me :-) and i know how u feel, but you have to stay positive and hope 4 d best. im computer illeterate! im only after finding this site. ive been unbelievibly alone. i have never talked to anyone that has children with cf. but at the end of the day i dont know wat 2 say 2 u but i just want you 2 know that your dream is the same as mine evey nite u lay ur head on ur pillow 2 go 2 sleep that some day there may b a cure! i just want 2 say that i know how u feel and that i can talk 2 u about it.... plz write back 2 me and let me know how ur 2 little boys r doing! xxxxxxxxxx (after drinking a bottle of wine) crying like an idiot writing this note 2 u


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/17/2008 2:01 AM (GMT -7)   
Statistic Fibrosis eh? Sounds like fun, and quite accurate. After all CF is built up on a hell of a lot of statistics. Ie-you should be this lung function, you have too be overweight too survive, you probably have this part of CF as 40% of Cystics do (I get this with the amount of sugar I eat and the fact that CF related diabetes is quite common.)

Over here it's called 65 Roses, after a little kid once called it that. Pretty name, I think it sounds much prettier than Cystic Fibrosis. I'm actually on a mission too get 65 roses tattooed on me. So far I'm upto 5. I'm thinking maybe just getting the number 65 tattoed now.

I also hate cannulas. My port-a-cath is my life saver, hurts only a little bit, and really is just a sharp scratch like doctors promise. Cannulas used to fail on me every 4 hours, and used to make some docs feel very guilty as I was a screamer. My mum was hardley ever around, wouldn't come in with injections of any sort, but thankfully we had very good cf nurses too entertain us. The effcts-like scars and failings, and a showing lump if you're particularly skinny-defnately outweigh the effects of cannulas.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 7/17/2008 3:20 AM (GMT -7)   
i might just copy your tatoo idea but i think i'd get the number 65(if anything it would b cheaper tongue )gypsys canulas dont last long the last time she was in hospital they but a long line in. when she was gettin discharged they snipped it and the tube went into her arm we had to go to a main childrens hospital so she could have surgery to get it out i couldnt believe they could make such a stupid mistake.thats not the first time that hospital messed things up with her im never bringin her back there again  mad   it seems like tryin to complain is pointless i never seem to get anywhere .

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/17/2008 5:39 AM (GMT -7)   
Wow, that's bad!!!!!!!! How can you get removing a longline wrong?!? It's the easiest thing on Earth (I used to remove my own, when having home IV's, due too line failing so often!)  I'm not suprised you want too move hospitals. Complaints systems suck at all hospitals I've been to though. It's almost not even worse making the complaint for all the hassle you have too go through with it. Keep at it if you can though-more compalints made about certain things, more likely they are to change things.
 
You're right-getting the number 65 tattoed would be loads cheaper. Probably pain free too......I never think of things simply though tongue
 
 
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


JessMarie
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/17/2008 4:50 PM (GMT -7)   
First and foremost, stop blaming yourself and just be there for your two boys. I am 23 years old and have CF. I was diagnosed with CF at birth and have had my fair share of problems. My lungs have collapsed a couple of times and have had meny infections. All you can is not give up hope, give all the love you can, and keep doing those treatments. Everything is going to turn out good. I know that your boys are and always will be very special. You all have a special place in my heart because I know exactly what you are going through. Please keep me posted.
 
   Jessie
 
 
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