Re : 7 year old with CP

[Guest guest]

Hello,

I am so sorry to hear about your child. I myself have had symptoms

since the age of about 5. I'm now 58 but it is only in the last few

years that the extensive calcifications and atrophy have shown up.

Obviously a child's and an adult's situations are very different. I

do know of others who have children with CP. I will look through my

records and try to find the family I'm thinking of. The husband had

a pancreatectomy at the age of 11 and both the children of the

family also have CP. There is a young boy, , whose mother,

Peg, posts on this site, who has had a TP (total pancreatectomy) at

Minnesota and another one I know of who had a TP here in UK at the

Middlesex hospital. Both ops seem to have been successful.

With regard to the best option for your child now, it must be a

specialist who advises. There are a number of excellent pancreas

centres in the US, eg. Pittsburgh where they do a lot of work with

children of CP families. Are you in the US? Of course I do realise

it's rather a large place!

Do you know why you have been advised to consider a partial rather

than a total pancreatectomy? Are there enough islet cells left to

hope that diabetes could be avoided with the ICT?

I do not take morphine, for the moment anyway. I do not have pain

every day and can have quite long pain-free spells. I take codeine

and paracetamol when I have pain. I still work full-time. I do get

bad pain days as well. As Sue said, every case is different and

children are different again.

I'm sorry not to be more helpful. This is such specialised stuff

that only the pancreatologist can help and advise.

Please do keep in touch and I'll find that info if you'd like it.

With every good wish to you and your family

Fliss (Felicity Brown)