Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

DS has brain tumour

324 replies

Clarinet60 · 22/07/2005 11:54

We finally got his MRI yesterday after waiting 5 months and there's a mass in the area that joins the 2 hemispheres. Of course, it was all systems go down to the childrens hospital in Manchester because the signs are that it's fast growing, that's why he's gone from 'funny turns' to daily seizures and then to 50 seizures per day. But when we got to Manchester, surprise surprise, they're not going to do his biopsy until 'some time next week' - he'll be slotted into their system.
So we came back home again.

He's well in himself, bouncing around like mad.
I'll let you know more when we know more, re benign/not.

OP posts:
Blu · 26/08/2005 13:39

helmet info

Oh Droile, sorry you have another long wait ahead of you. But at least things are moving. How damn frustrating about the notes and communication etc.

ggglimpopo · 26/08/2005 13:45

Message withdrawn

DissLocated · 26/08/2005 14:49

Hooray for a week with no seizures!

Did they not offer you Walton? Dp was in Warrington when he was taken ill and they wanted to take him to Walton but because we live in Norfolk we were transferred to Addenbrookes in Cambridge.

We were told at the time that Walton was very good, just thought it might be an alternative if you can't get into Alder Hey.

motherinferior · 26/08/2005 14:57

Oh Droile, at least things are starting to move.
xxxxxxxxxxxxxxxxxxxxxx

Thomcat · 26/08/2005 20:49

Hiya Droile, hmmm well first off wonderful stuff with regard to 7 seizure free days, that's great. Also brilliant that finally things are happening. With regard to, everything else, I'm sat here holding my breath and have just said a little prayer. Thinking of you as always, was even talking about you today at lunch! Keep posting hon'.
TC x

suedonim · 26/08/2005 22:03

Good news about the lack of seizures, Droile! Your Con sounds like a nice man, hope everything will be done asap. Thinking of you all.

Original poster
Clarinet60 · 26/08/2005 22:20

Thanks everyone.
We have an appointment on Tues about the helmet, and while he's seizure-free, I'll just let them get on with it, but thanks for the offer, ggglimpopo, and thanks for info, Blu. The OT I spoke to sounded like she thinks the assessment & fitting might be sooner rather than later.
They didn't offer us Walton, disslocated. They've never offered us a choice of hospital.
He does seem nice and inspires lots of confidence. He's a broad scouser too, so if I shut my eyes, I can pretend we're at Alder Hey...

OP posts:
Demented · 26/08/2005 22:23

Thinking of you Droile.

kando · 30/08/2005 15:35

OMG Droile, I've only just seen this after being off-line for ages (you may remember we CAT'd each other a couple of times when your ds and my dd had been diagnosed with epilepsy). I was really shocked to hear your DS' epilepsy is because of a brain tumour, I can't even begin to imagine how that must feel to you. It's bad enough coming to terms with the fact that he's got epilepsy. I'm glad things are moving along for you and you are now being seen by the right people. Your DS is a little trooper, and you sound amazingly "together" throughout this whole thing. I really admire you.

DD1 is absolutely fine now, her absence seizures are completely controlled with her medication and her consultant is very pleased that she's on such a low dose of medicine. She's had her MRI which came back with a couple of abnormalities but nothing serious for us to worry about, but we are being referred to a paed out here in Holland now who will hopefully do the tests her consultant in the UK would have done were we still living there (does that make sense?!)

Anyway, my thoughts are with you and your family, I really hope all goes well for you.
Big hugs
Kandoxxx

bundle · 30/08/2005 15:40

hello droile, thinking about you, xxxxxx

potty1 · 30/08/2005 15:52

Me too Droile - hoping your ds is still seizure free.

Original poster
Clarinet60 · 31/08/2005 10:47

Thanks Kando. Glad to hear your dd is seizure-free with such a low dose. It has taken a high dose of 3 different drugs to get ds seizure-free. He was measured for his helmet yesterday, and it will be fitted next week. They are going ahead with it despite his lack of seizures atm because they've always come back in the past.
Kando, did they explain what the mri abnormalities were?

OP posts:
Original poster
Clarinet60 · 31/08/2005 10:49

He is, potty, thanks, and it makes such a big difference to our lives not having to scramble around behind him all the time.
Hi Bundle. We're finishing painting today and DS1 is going to do some modelling out of old kitchen roll tubes. Goodness knows what will come of it!

OP posts:
tigermoth · 31/08/2005 10:54

hi droile, you sound like you've got a busy day ahead, then! glad the medication is working - When that helmet comes, perhaps your son can customise it - is there room for stickers on it?

Original poster
Clarinet60 · 01/09/2005 19:50

I'm not sure tigermoth, but they did say he could have it in any colour, and he chose green.

OP posts:
tigermoth · 01/09/2005 19:55

Hope it comes soon and your son is happy to wear it. If you can add stickers, he could do lots to it if he wanted to.

littlesteppers · 01/09/2005 20:09

oh droile, im so sorry,

i hope everything turns out for the best, hope your ds is ok.

thinking of you all

Original poster
Clarinet60 · 01/09/2005 22:07

Thanks littlesteppers. When the biopsy is done, at least we'll know more.

OP posts:
Blu · 05/09/2005 01:30

Hello Droile - just wondering how you are and what you are up to - and of course how the modelling worked out!!
I'm, pleased that they have actually moved on the helmet front - one little worry less - but even more pleased that as long as he is seizure free he doesn't need it.

ggglimpopo · 05/09/2005 05:50

Message withdrawn

Original poster
Clarinet60 · 06/09/2005 23:13

Blu, the modelling didn't happen in the end - we were too busy painting! I now have photo of finished painting on pc, just need to figure out how to get it on here, along with ds pictures.

He had his helmet fitting today but it's a bit too small, so we're going back next week. Still no word on the biopsy date, but Alder hey have come through with an appt to see him. Trouble is, he may have had biopsy done by the time AH can fit him in for op, but we're going to see them anyway, as no harm in that.

Still seizure-free, which is marvellous. He's a happy boy.

The round robin didn't really work. I did it by phone in the end rather than letter, but still no show. I've promised to pop in to see a couple of people I bumped into in Sainsbury's, so I'm quite busy, but apart from that, there's still little noticable support.

OP posts:
lou33 · 06/09/2005 23:16

So pleased to hear he is still seizure free ,Droile.

Blu · 06/09/2005 23:18

Phew - it's lovely to hear that he's a happy boy.
When is the Alder Hey appt, Droile?
Thinking of you.

Original poster
Clarinet60 · 06/09/2005 23:30

Thanks, both.
It's next Tues morning.

OP posts:
Original poster
Clarinet60 · 06/09/2005 23:31

So glad to see you back Lou, you've been missed.

OP posts:
Swipe left for the next trending thread