Diet for Deb. Others please reply!

[Guest guest]

Hi Deb!

I'm sorry you're having a rough patch. Actually, I'm on my third bad

day in succession to-day. Not sure why.

Well, I have to say that for many years I have not had the

experience of being unable to eat anything at all. When I did get

that type of flare-up, I drank only Lucozade (sparkling glucose

drink) until the worst passed. The attacks lasted a week at a time

in childhood but were shorter in late adolescence and early adult

life.

Shorter, sharper flare-ups with staetorrhoea, which occurred in my

late 30's and early 40's lasted a short time and I was usually able

to eat and drink the next day without making anything worse.

Eventually these attacks ran into each other but I never stopped

eating completely.

These days my attacks are different again. No steatorrhoea thanks to

Creon. I do get pain and weakness and a general feeling of being

very unwell. to-day, for example, I am not well but I will still eat

simple bland food. The last couple of days I have been careful to

keep fat levels very low indeed but I have still eaten.

I am not the best person to ask about this, Deb, as I've explained,

since, so far, I have been able to eat. I do worry that the disease

may now be progressing to a point where I will not be able to eat

but it hasn't happened yet. I've had symptoms of hereditary CP for

53 years and am now 58.

I'm certain others will reply who have more experience of this

particular problem. You will certainly need to keep up your energy

levels and remain hydrated, simply with water if necessary. Have you

not had more definite advice on nutrition from your docs?

I do wish you luck and await other replies with interest.

Fliss (UK)