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DD having third MRI tomorrow.

(57 Posts)
JetcatisBack Mon 02-Sep-13 22:27:43

Oh I'm so scared. DD started having seizures in February this year, totally out of the blue (apart from one six year ago) so she had an EEG which suggested features of epilepsy - focal and generalised. She then had an MRI, which came back clear.

Except it wasn't clear. Over the summer DD has had more and more seizures, despite being drugged up to the eyeballs. A couple of weeks ago she was the worst we had ever seen her, consultant said she was having'non-status convulsions', so apart from the fits we could see every two hours or so, when I thought she was then sleeping them off, apparently her brain was still fitting. She then started with absences, delusions, memory loss, confusion and basically a total personality change.

Sorry, I was waffling there. While she was in hospital this time, they did another MRI, which has identified something on/in her brain. So they went back and checked the last scan, and yup - it was there as well, but really small so they missed it. They only found it this time because they knew where to look from the second scan.

So tomorrow she is having a contrast MRI, to check "tissue density" and what effect this is having on how her brain is functioning.

I am absolutely terrified, have fallen back into a depression that I had been working so hard on beating, and basically want to run away and hide and pretend none of this is happening.

I have ummhed and ahhed over posting tbh, as I'm not that great at social interaction, and fear that posting may be a step too far for me as well as the worry that no one will reply but I'm sitting here in the dark so so scared about what tomorrow will bring and just needed to off load a little.

PavlovtheCat Mon 02-Sep-13 22:29:56

I am so sorry your daughter is going through this. That you are going through this. I have no experience of this, but wanted to offer you a <hand> to hold and some positive thoughts and good wishes for tomorrow.

How old is she?

HumphreyCobbler Mon 02-Sep-13 22:30:47

oh sweetheart, how incredibly worrying for you. I am sorry I have no expertise to offer but I am a hand to hold. I am sure there will be others.

JetcatisBack Mon 02-Sep-13 22:34:33

Thanks Pavlov, I genuinely thought no one would reply. She is 16, I have DD2 as well who is 6, and they both idolise each other. Because DD1 is also autistic, DD2 is like a little mother hen to her, and while it fills me with pride to see that, it also breaks my heart a little that is needed.

It feels like the entire summer hols have been spent in and out of hospital, not at the beach like we planned.

Sorry, waffling again - and thanks for the hand holding, I could really do with it.

PavlovtheCat Mon 02-Sep-13 22:37:58

She must be feeling quite frightened too. I really hope they can find out what is causing this, properly, so it can be treated. I think we are in for some good weather for a bit longer, so when she is feeling better, take her out of school for a few days and do the beach anyway when she will enjoy it more.

HumphreyCobbler Mon 02-Sep-13 22:38:18

It can be so hard to think about what a period of time should have been like, if this dreadful stressful thing had not happened. Life should have been fun and normal and instead it has been scary and full of worry sad

your daughters sound fab.

minmooch Mon 02-Sep-13 22:38:40

I'm so sorry to read about your DD Jetcat. I hope that tomorrow's MRI gives you some answers so that treatment can start to help your DD.

My DS had an MRI on Saturday morning - he has a brain tumour, had it diagnosed 22 months ago - and we are waiting for results to see if it is being kept at bay.

Frightening times all round - I shall think of you tomorrow.

neffi Mon 02-Sep-13 22:40:06

How scary for you and her. I hope you'll come back and tell us how you got on and I really hope it's fixable. Big hugs.

JetcatisBack Mon 02-Sep-13 22:45:52

Oh minmooch, sending all my love to your DS sad

Humphrey - thank you, they are fab! <clearly biased> I'm not too sure just how much DD understands about all this. The only time I've seen her proper scared and upset was this last time in hospital when I got upset. She had been talking to me for a few mins (well, just saying random stuff to be honest) but it was the most lucid she had been in days, which was reassuring. Until she asked me when her mam was arriving - she had no idea who I was. That broke my heart - nearly as much as DD2's heart was broken when she realised DD had no idea what Despicable Me was, despite them watching it many times together.

borninastorm Mon 02-Sep-13 22:46:48

Having spent time in neuro wards in hospitals with my DD when she was a baby, please let me reassure you that they are quite incredible at what they do.

They saved my dd's life even when they thought they couldn't.

It's absolutely ok to want to run away and hide, it's all I wanted to do when dd was in hospital all those years ago. Actually I wanted to do it lots afterwards as well!

But you will find the strength to get through it, I don't know where it comes from but that strength will find you and you will cope tomorrow. I promise.

And tomorrow night, it will be absolutely ok to have a cry to yourself and let it all out.

Please try to get some sleep tonight, it really is the best thing to do. And come back and let us know how your dd got on and how you're bearing up. Mumsnetters are great for handholding and letting you share the things you can't say out loud. I wish it had been there when my dd was ill.

Mintyy Mon 02-Sep-13 22:47:15

I will be thinking of you both tomorrow JetCat. Thoughts are very much with you.

HumphreyCobbler Mon 02-Sep-13 22:52:08

Yes, will be thinking of you and your girls

JetcatisBack Mon 02-Sep-13 22:52:42

Thank you all flowers

I

JetcatisBack Mon 02-Sep-13 23:00:05

Borninastorm, everyone keeps telling me they've no idea how I'm coping - but that's just it. I don't feel that I am. I think I am in total denial, not having any real idea of a plan and I'm very much a person who needs to have some sort of a plan to cling to.

And as for saying things on here I can't say in real life - oh my word yes. Last week DD sat with me and a friend for nearly an hour - DD has known this person for two years now. But she got really distressed as she couldn't remember who she was. People were telling me that was only because my friend had her hair different. Not wanting to upset anyone, I agreed, when in reality I just wanted to scream - she's ill, not f***ing stupid blush

I'm happy your DD pulled through smile

JaquelineHyde Mon 02-Sep-13 23:26:17

Hello lovely, nothing much else to say to than I already have other than you are an amazing Mum and your girls are lucky to have you.

When you feel up to it please let us know how it goes tomorrow, I will be thinking of you and both DDs and praying for positive news.

thanks thanks thanks

Lizzylou Tue 03-Sep-13 09:02:57

Another one sending you good luck and positive vibes my lovely.

You are allowed to vent, it is healthy and exactly what you need.

Yours DDs are amazing and so are you.

Thinking of you all flowers

JetcatisBack Tue 03-Sep-13 10:55:36

Trying to keep busy. Thanks for your kind words flowers

HumphreyCobbler Tue 03-Sep-13 12:00:12

hang on in there XX

HerrenaHarridan Tue 03-Sep-13 12:30:14

Hi jet, thinking of you and your dds. Fingers crossed they get to the bottom of this soon.

I know you mean about people making silly excuses, it's hard not to bite their heads off and not the end if the world if you do. It's perfectly understandable.

JetcatisBack Tue 03-Sep-13 21:05:21

Well, scan didn't happen. Rebooked for a couple of weeks, when she has to go to Childrens Outpatients for the dye injection as apparently the people there today not experienced enough for someone with as poor veins as DD. And because DD is under 18, there are only two sessions per week when she could have her scan - the next available appointment is two weeks.

I collapsed. I really cant take much more.

PavlovtheCat Tue 03-Sep-13 21:12:31

Oh jet I am so sorry your DD didn't get the scan, how upsetting and frustrating to have this dragged out and no outcome that you can work with today. I just don't know what to say sad but brew and cake might be in order at least in the absence of words that might help.

Quangle Tue 03-Sep-13 21:17:27

Oh jet. I'm so sorry you are no further forward - I have absolutely no knowledge or experience. All I know is it sounds awful for you all. Thinking of you and your family.

Lizzylou Tue 03-Sep-13 21:17:37

Oh how fucking frustrating for you.
2 weeks will fly by, fingers crossed.
You poor thing.

HumphreyCobbler Tue 03-Sep-13 22:14:10

Oh no. How frustrating. Are you feeling ok now? Not surprised you collapsed, the strain must be immense.

HerrenaHarridan Tue 03-Sep-13 23:01:38

Ffs! That's is ducking ridiculous!

I'm so angry for you, you sound too tired to be angry sad

I hope they get her in quicker than that. Is she an in patient? My dd has been admitted as an inpatient specifically so they could get her MRI done next day. Might be worth chasing up her consultant.

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