Hello

This is my first post. Like many i guess, i am panicking over our son and thought that joining a forum may help.

My name is Matthew, like in the UK and have an 8 month old son (6 months corrected) called Harry. He was 2 months prem and on day 3 had an IVH and then developed Hydrcephalus. Without going through it all he now has a revised shunt - its a programmable item set to 100 and seems to be working well. His head circ has stabilised as his last VP was allowing him to creep up a little too fast on the head growth.

Anyway he has his revision 4 weeks ago and it went well but he developed a sever tummy bug (gastroenteritus) and was ill for a week. Then he was OK for a week but now this is where the trouble starts. He started with crying and we worked out it was tummy cramps and trouble passing wind. went to GP, then A&E, then transferred to the Neuro HDU at his original hospital ( Alder Hey in liverpool - quite well regarded) for observation.

Basically two teams are looking after him - A neuro and a general surgical team. BUT they cant seem to figure out what it wrong. After blood tests(ok) and CT scan they noticed fluid pockets in his abdomen. After discussion and checking of the shunt they felt that the problem lay with his tummy and decided to try antibiotics to improve things, as they did not want to externalise the Shunt at this stage. So after 5 days his health and attitude to being handled improved each day - last night all was well and he was giddy, laughing and full of life.

So at bedtime last night he had a vomit, had some more milk and went to sleep. He then woke at 3am, he had vomitted again and his temp was 37.9deg C. So after a week we feel he has taken a step back and nobody seems to know the problem. They plan to scan his tummy again tomorrow. His bloods this morning were OK despite his temp. He has been grumbly today but generally OK. I think the next step is to externalise the catheter with a view to try and let his tummy recover.

So has anyone had anything like this? Is the CSF not being absorbed properly because of a bug? Is the CSF causing a bug? Could it be something more sinister? I just dont know, the docs seem to be too laid back and not being definitive and saying 'right then Harrys dad, this is the problem!' they seem to just prefer to wait and see what develops. Its driving me crazy, i want him home and well but hes stuck in hospital with no diagnosis

can somebody please help a worried dad?

Thank you

Matthew

Basically can anyone help?

Hi Matthew, my younger son has hydrocephalus and was also born with only one kidney which wasn't working properly, so was in hospital at 6 weeks old. I can understand exactly how you feel, you are in the hands of the doctors, you feel scared, helpless and terified something awful will happen. I can assure you the worst part is the waiting, not knowing what is wrong and waiting for them to make up their minds what to do. They will sort it, your little boy like mine is obviously a fighter. My son is now 36, on his 3rd shunt, we have just returned from The John Radcliffe in Oxford, they have reset the pressure from 90 to 100. His first shunt drained into his heart the second and subsequent one into his stomach. We've had some worries over the years as you would expect, but he's been able to lead a normal life, except that we cant go through airport security gate as it alters the pressure setting. we go by ery instead. So try not to panic too much the Doctors will get to the bottom of it, best not to rush and make the wrong decision. kind regards and love to Harry Ann

Hi Matthew-

My son had some problems with his first vp shunt and needed a va shunt for a while (where it goes to the atria of the heart). He did well with it. The only problem is that every couple years the tubing has to be lengthed because they can't put extra in the heart. It is more efficient at pumping out the fluid, but the downside is multiple surgeries- not with the head, just the tube. At his last revision, we decided to give the belly another chance. So far so good. Some people just can't handle the tubing and extra fluid.