back from hospital today after DD her her first shunt blockage in 9 years :(

[anniebear]

rung our Doc monday morning just for him to take a look at DD as she had been sick and was so so sleepy , was worried she could be dehydrated....my emergency appointmant was for 3 hours later...still fuming

went to A&E instead

she got seen quite quickly , had a ct scan. she brought up green watery stuff as soon as we got there, but they were not concerned
She was still asleep , I thought it might still be a bug but as the day went on (on a ward by now) i was more convinced it was her shunt. they did a CT scan which showed her ventricles were a little enlarged to what they would expect but they had nothing to compare with . Now loooking back they only had to take one look to see how sleepy she was and put 2 and 2 together

took ages for the ct scan to come back, baring in mind she needs to see a neuro surgeon within 3 hours , we were there 12hrs in the end

they rung Alder Hey who decided they wanted her there, but that took ages, by this time I was panicking,she didnt look like my daughter, her forhead and near her eyes were bigger, I was 100% certain it was her shunt. But the nurse said dont worry, they arent worried, we havent been told to blue light you over. But we did, lights and siren to Alder Hey.

Neuro Surgeon saw her asap, mentioned maybe needng a new shunt but wasnt sure. then he came back 5 mins later , had another feel of her shunt and said" right , she is going for a shunt revision now" (shunt replacement) and that it was now an emergency and she was going tachicardic (cant spell) so off she went for emergency brain surgery

she got a full new shunt, they had to leave the old one in as they were worried if they tried to remove it she could have a bleed in the brain and have more brain damage

came home today she is doing well, I however are going to take much much longer

still feel like it was all a very bad dream

sorry that was very waffly and long

rough week indeed annie, hope she continues to improve

Oh what a stressful and scary time annie! I am glad to hear she is doing well. Get some well earned rest xx

thanks will try, hitting me a bit this afternoon when we came home

thankyou xx

poor DD and poor you, what a shame you've had such a stressful time of it.

Oh no, what an awful week, I'm glad your dd is doing ok now. My dd has a shunt, she's had it replaced twice, she has annual CT scans so they always have an upto date scan comparison if she's having issues. You might not want annual due to radiation but it's definitely worth asking about a new shunt series when your dd is well.

thanks everyone

this is what I asked the Doctor, how come they do not have a scan every few years, but I think it was due to the radiation

too be honest once they saw the ventricles were looking enlarged, I dont think they should have wondered but what are they normally like, they should have looked at DD, seen how totally asleep she was , and had been for 18hours, had been sick over 18 hours and had her straight to Alder Hey.

I did speak up and say we were getting really concerned but they didnt seem to share the same urgency, think if she was like this again, now I know whart to expect I will totally bypass local hospital and go straight to A&E

The shunt dd had placed last year has a button on it, that you can press and if it stays depressed the shunt is blocked, very handy. We had the same problem when dd's first shunt was blocked, in the end I rang the neuro ward and spoke to the surgeon we transferred the next day.

Did they do a CT after the shunt was placed this week? Dd's brain is a complete mess, she doesn't really have ventricles as such so scans help the local hospital a lot.

Hi annie - that sounds like a really scary time and hope that all is well now.

Luckily DS is not such a poorly child as he was, every time we ended up on the local childrens ward they decided he had shunt blockages - even when the evidence showedotherwise they would still be saying it was his shunt!

Bob - thats interesting. I know it used to be the case that parents were taught to do this but when DS had his (first) shunt the hospital he goes to were not doing this. What goes around comes around!! (the reason we found out about it was due to an a&e doctor telling us off for not doing it, so we checked with the neuro team and were told that they didn't do it any more)

Having said that DS has two shunts and one will depress but the other is a different design and won't.

I was told only to do it if I was worried about the shunt blocking, dd tends to go downhill very rapidly and we're 150 miles from the neuro hospital, so it's handy to be able to rule out shunt blockage. Dd is on her 3rd shunt and this is the only one that has had the button. She also has an ommaya reservoir which you can press to check pressures but I don't like doing that as it's in her skull.

I haven't come across the ommaya reservoir so googled it and I can see why you wouldn't like to do that!

DS still has a significant "soft spot" at the back of his head (he's 13 so I doubt it will close now) which acts as our early warning system!

god how awful

It's really useful as they can tap it to check csf and also monitor pressure, but I feel odd pressing it, I'm scared it might fall in

No she didnt have anymore scans done.Oh well at leadt I know what to expect if it happens again thanks for the support xx

Hiya Jimjams :)