Welcome ,

[Guest guest]

HI ,

I'm sorry to hear about your son's diagnosis. It's always a shock but

especially when there is no history. There is no history in my family,

either, so I know JUST how you feel.

It sounds like your son was pancreatic sufficient for a while until his own

enzymes became blocked. My son (who was diagnosed at 9 months) is now 4.

He weighs just under 32 pounds (and he's 40 inches). My husband is slim so

this is not unusual. It sounds like is doing fine weight-wise.

Santosh also has orange oily stools when he doesn't have proper enzyme

dosage with the foods he eats. He is on a much higher dose than your son.

Make sure when they take blood from your son they check his beta carotene

levels. Santosh's are always low, because the orange you see in your son's

stool is beta carotene coloring the fat/oil. Santosh's levels of Beta

Carotene are always low, and he takes vitamins formulated just for CFers.

These are often ADEKs or Vita Max. The former come in liquid (which is

orange due to beta carotene!) and both come in chewable form.

Although my son does not have asthma (knock on wood) it is very common in CF

patients.

You have every right to worry about your son. Keep asking questions and be

very vocal. I was not loud enough when my son was an infant, which is what

took so long to diagnose him (among other things). Ask until ALL your

questions are answered, you are paying to go to the CF clinic and they are

getting paid to answer you.

I have always understood that part of CF is what you catch and when you

catch it. Meaning it depends on the nutritional status and strength of a

CFer when they catch a bacteria or virus how well they will combat it.

Physical condition (e.g. exercise) of the patient, their age, and the

severity of the bacteria/virus also contribute.

We have been lucky so far - Santosh caught RSV before he was diagnosed and

was hospitalized, but since then we have not had anything too major.

Regular colds, coughs, and fevers, but only one bout of bronchitis that

required antibiotics. He has had more GI problems then pulmonary thus far

(although I'll add that he has completed his first 6 weeks of school and has

had 3 colds). He is also headed in for a CT scan on Oct. 19 to rule out

sinusitis due to chronic post-nasal drip or to investigate if he has

allergies.

I hope thrives on the Creon and does well. Once you get through the

initial shock (which takes TIME - and doesn't entirely wear off), it does

become a part of your life. This sounds strange but I feel lucky in many

ways - I feel that the ability to hear my son say he loves me, and to see

him go to school and have friends is so much better than many have it.

Please hang in there and continue to ask this list and/or your doctors.

Wishing you the best and looking forward to more posts from you!

Krishnan

Mom to Santosh, 4wcf and Leela, 2wocf

[Guest guest]

thankyou, you have made me feel better and I will definitly ask about his

beta carotene, glad to hear that your child is in good health.