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OnlyA

New Member

Joined : May 2006

Posts : 6

Posted 5/19/2006 1:57 PM (GMT -7)

I am also new to this forum. I have a 11 year old son with C.F. my family thinks i need to chat with others who go through the same things that i do, so i will give it a try. My son is in the hospital right now but will leave on monday.

Twinstride

Regular Member

Joined : Sep 2005

Posts : 318

Posted 5/19/2006 2:10 PM (GMT -7)

Welcome OnlyA to HW CF Room!

Wow, you have your hands full there. Pat on the back mom and hugs!. I think your family is right! and we are here for you. Also, I would like to extend to you to add your details about you in the CF Member thread in the CF Room. Others can learn about you and you learn about them.

Please keep us posted on his progress.

Again Welcome, make yourself at home!.
Cheers

Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.

Moderator, Cystic Fibrosis. "If there is questionable doubt, check it out"....with your healthcare provider!. We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can. Don't hesitate to step on in and enjoy and remember! "Never give up hope for a cure" one day we will get there!".

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mommyscfbaby

New Member

Joined : Mar 2006

Posts : 19

Posted 5/19/2006 3:28 PM (GMT -7)

Hi Only A my name is Heather and i have a son who is 3 months old with CF.We found out he had it when his newborn screening came back positive at 8 days old.I know I feel better when I chat with other people it just remindes you other people are out there going through some of the same stuff and your not alone.I see your son is alot older than mine, has he been relitively healthy? So far our son has not been sick ( praise the Lord). Well just wanted to let you know I'm here to chat if you need to.

Heather

OnlyA

New Member

Joined : May 2006

Posts : 6

Posted 5/19/2006 7:54 PM (GMT -7)

Thank you for your kind words i look forward to getting to know you..onlya

imondeck

Regular Member

Joined : Apr 2006

Posts : 105

Posted 5/20/2006 9:11 AM (GMT -7)

Welcome OnlyA! I too have an 11 year old son with cf, he is my youngest of 4 children. He goes to see his pulmo for his 3 month checkup this Tuesday the 23'rd. Hoping for a good visit as he has been healthy except for weight issues and being tired. Also need to ask about "white patches" appearing on his face.

Hope your son comes home on Monday and again, welcome!

Sandra

Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...

OnlyA

New Member

Joined : May 2006

Posts : 6

Posted 5/21/2006 9:16 AM (GMT -7)

LET ME KNOW about THE WHITE PATCHES AS ADAM SOMETIMES GETS THOSE ALSO... I JUST ASSUMED IT WAS BECAUSE HE WAS NOT GETTING ENOUGHT VITAMINS.

HE IS DOING WELL AND READY TO COME HOME HE IS BORED TO TEARS...WHERE ARE YOU FROM?

imondeck

Regular Member

Joined : Apr 2006

Posts : 105

Posted 5/21/2006 9:41 AM (GMT -7)

I am asking his pulmo on Tuesday about the white patches. Doing some research, it could be a number of different things causing it. I will let you know what his doc says.

I am originally from Latrobe, Pa. but have been living in Moore, Oklahoma for about 12 years and have made it my home. I really love it here except for the tornados (I have a storm shelter, so that makes it better, I suppose).

Sandra

OnlyA said...

LET ME KNOW about THE WHITE PATCHES AS ADAM SOMETIMES GETS THOSE ALSO... I JUST ASSUMED IT WAS BECAUSE HE WAS NOT GETTING ENOUGHT VITAMINS.

HE IS DOING WELL AND READY TO COME HOME HE IS BORED TO TEARS...WHERE ARE YOU FROM?

Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...

faithful83

Regular Member

Joined : Jan 2006

Posts : 47

Posted 5/23/2006 8:14 PM (GMT -7)

White patches/ spots can be from a number of things. I always get these when my enezymes are low or if the vitamins,zinc or calcium is low. but i dont get them on my tummy they are on my legs. i dont know if its the same thing for all of ya or not but look at ya kids fingernails. do u see white dots/spots there too? if you do im betting its the vitamins but im not a doctor or a kid so it may be diff for them. do any of ya with kids with cf or anyone who has Cf get hair on your tummy? if so what is that from???

faithful

imondeck

Regular Member

Joined : Apr 2006

Posts : 105

Posted 5/24/2006 9:07 AM (GMT -7)

Very good check-up yesterday! He has gained 2 lbs. - now weighs 58lbs. PFT's 87% (fev1). The doc. says the white patches are due to hyper pigmentation and that it is more noticeable in the summer time (because of the skin tanning).

He had a throat swab, my son does NOT like throat swabs, he would rather give blood than have a throat swab (anyone else's children this way)?

Anyway, hope everyone else is doing well. Last day of school is today for my boys. One graduated high school, one is in junior high and the youngest is in elementary school. Oh and my oldest (daughter) just got accepted to OU Health Sciences Center, she is pursuing a career as an OT.

Faith/Tricia - I think the hair on tummy is normal - everyone is different - some people are just "hairier" than others. I thought I read somewhere it is due to hormones?

Sandra

"When in doubt, ask your health care provider".

Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...

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