Zacks follow-up

[Guest guest]

Well, we went to the dr. again yesterday and it was not a good day. Zack

didn't culture pseudomonas but everything else was bad. I just a week he has

lost 3 pounds and even though he is getting his enzymes like he is supposed to

he

is having those awful poops again. The worst part is he isn't even eating

anything to absorb it. So the Dr. switched us to the Ultrase MT12 and he said

if he continues to lose over the next week we are gonna try him on Zantac and

if that don't work then it looks like a hospital stay with follow. I am

freaking out. It is a fight to get this child to eat and then when he does his

poor

little body still doesn't get what it needs.

On top of that we were informed that most kids with CF don't have a cough all

the time like Zack does. They said they are gonna try to treat it with

antibiotics again (just oral right now) but if it doesn't go away that could

indicate that he already has some lung damage. All I can think is that for the

first 2 years of this child's life he had chronic respiratory infection and all

of

it was due to the CF yet it went untreated because these idiot DR. s that

know little to nothing about CF wouldn't test him to see why he was staying so

sick!

Well, they also ran a bunch more blood test to see if he is deficit in

anything and how his liver and stuff are so hopefully we will get some good news

back on that. The best news I have had all week is when the vest company called

and said we should get are vest tomorrow or Thursday! I was shocked after

hearing every one saying it would take 6-8 weeks, we just got the prescription

for it last Tuesday.

Sorry for venting but I had to get it off my chest. I am so frustrated with

incompetent DR. s and ignorant people. This uneducated assumptions of our

children's disease is uncalled for. We really do need to do something to bring

to

light what CF really is and that it is something that more dr. need to look

for in children who have serious respiratory problems before there it is to

late and there is already permanent lung damage done.

Christal mom of tristan 6 ncf, Zack 2pwcf, and Ki'a 8 months ncf.