introducing myself

[Guest guest]

Hello,

I am new to your group. I have been a member of Cystic L on and off for a few

years. Today I got a message in my e-mail inviting me to join your group. I am

very pleased to join you. I didn't really post much on the other list because

alot of the issues dealt with adults managing their own care. Those people were

the " experts " in my opinion, so I just sat back and read the posts, and learned

as much as I could from them. But as parents of children with CF, I realize

there is so much that I can learn from you also.

My name is . My son is 14 and he has CF. He was diagnosed at the age

of 5, and I'm sure I don't have to tell you how it went from there. The fear,

the why us, the feeling that life was over from that point on. I'm glad to tell

you that we've come a long way since then. I read all the books, but after

living the reality for nine years, I now know that we can't actually " live " with

the constant fear of dying.

We have been lucky in alot of aspects of this disease. Josh has always been able

to maintain his weight well with out the use of enzymes. In fact he only started

taking them in the last year. he only needs a " tune-up " every 18 mos or so. At

least until he started the " motrin study " . Apparently, the Motrin thinned his

blood. He had a section of his lung that had been prone to infection, and this

area started to bleed. When he was lying down, he felt like he was literally

drowning in his own blood. I would call his doctor and of course, they thought I

was over reacting. I really can't blame them. Any sign of blood from your childs

lungs would cause most parents to freak. But this was ALOT of blood. Finally

they told me (in a condecending way) that if I really felt that he needed to be

seen< I would have to bring him to the ER and chances were that they would keep

him. Well, since he was still bleedind, I grabbed a gallon ice cream bucket that

I was storing baby toys in and told him if you need to cough up anything, use

this. By the time we got to the ER it was 1/4 full! This got results. Everyone

went into a panic. They wouldn't let him stand to get his weight, afraid that he

might pass out. There was talk of a transfusion if he didnt stop bleeding. Let

me tell you, I was taken seriously from then on!! This was about 3 years ago, he

still bleeds when he get's an infection, but nothing like before. What is so

strange to me, is that none of the parents on the other list ever mentioned any

bleeding. Only the adults. So it seems that this may be the place for me. If

anyone has had any experience with bleeding I would apprecieate any advice.

Well, I feel that I've written a book here. A big thank you for the invitation

to join you. And good night!

aka " Josh's mom "