Pituitary News, Issue 24 - Summer 2002.

This is the first of two parents' stories describing their child's pituitary condition, its effects on their child and on their families.

Family life when caring for a child with pituitary conditions

In 1998 our son, N (aged 9) was diagnosed with a "brain tumour". He then had an operation to remove a Craniopharyngioma, an event that changed our family in a number of ways.

In the first place the operation itself is fraught with uncertainty and nobody really knows what the outcome is going to be prior to the operation. There are significant risks and this led to a high level of anxiety for us as parents, which lasted beyond the day of the operation as N had to have a shunt 1 inserted a few days later. Being with N whilst in hospital put all family life on hold, as hospital visiting became all time consuming.

After the operations and once N was out of hospital it was a matter of getting on with family life. However as parents, we made the mistake of under-estimating the impact all this trauma would have on N's twin brother. All the attention and focus was on N and we ignored the anxiety and worry that his brother was going through. There was just so much to do! All the new medication, the daily hospital visits for Radiotherapy and then later sorting out Growth hormone injections.

Looking back we should have sought help from our family or professionals in order to have given N's brother more time and counselling. Fortunately his younger sister (age 5) was too young to be much affected by what was going on.

Almost four years has passed now but life is not the same as it was before N was taken ill. There are the endless hospital visits for hormone treatment, eye tests, surgeon clinics and follow up visits for the radiotherapy check ups. I think N must hold the world record for the most scans! We have now recruited the help of our parents. My father does most of the out patient appointments and this has been a big help, especially as both my wife and I work full time. In a similar vein my father in law looks after N if he has to miss school.

N has many of the well-known symptoms of pituitary conditions including being moody, thirsty, etc and as a family we all sometimes forget to make allowances. This can often lead to him falling out with his brother and sister although I am pleased to say they have always made it up afterwards!

Medication is now done in a strict routine and this helps N keep on top of it. He has a tablet box that has separate compartments for every day of the week. He also now does his own growth hormone injections. We had to make the school fully aware of his condition and although this took some time to do (as there was a tendency for the school to over react to his condition). Generally things are as normal as possible with N visiting the office at lunchtime to take his tablets and just avoiding contact sports. We felt it very important to get N back into mainstream life as quickly as possible.

I am pleased to say that even with his restrictions and subsequent weight increase N has a near normal life. As parents we are always worried if he is on his own and so we encourage him to always carry spare tablets and always wear his medical alert chain!

Footnote

1 It is relatively common in a child with a craniopharyngioma for the ventricles of the brain to become enlarged due to the build-up of Cerebrospinal fluid (CSF) or 'water on the brain'. CSF normally circulates round the brain and passes into the blood stream, but when blocked a tube can be inserted to connect a ventricle to the abdomen (ventriculo-peritoneal shunt). An interconnecting valve is used to regulate the speed and pressure of the draining of CSF. Shunts may be either temporary or permanent.