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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.

JetcatisBack Fri 06-Sep-13 13:52:49

Well, meeting was awfulsad

Anyway. Beautifulgirls - thank you so much for your offer to inbox you, I hope you wont be offended if I hold off just now, I think I have a million things going round my head (with focus on one or two) and until I have confirmation of whatever is going on, I don't want to worry myself even more than normal. I may come back to it though smile

Conina, your reply was very helpful thankssmile Reminds me to keep on keeping on! <accepts brew>

HumphreyCobbler Fri 06-Sep-13 16:33:32

sorry meeting went badly jetcat. You really don't need that right now.

Lizzylou Fri 06-Sep-13 17:01:49

Oh Jet, hope you're ok after the meeting, sorry it went badly.

saintlyjimjams Fri 06-Sep-13 18:38:59

Sorry to hear it was a difficult meeting jetcat sad I will say that doctors don't have crystal balls and they often seem to present the worst case scenario (I have a severely disabled child who is doing much better than we could have hoped for tbh).

Heebiejeebie Fri 06-Sep-13 18:39:00

The blood tests are all looking for things like autoimmune (treatable) brain conditions. The MRI report doesn't sound like a tumour, more like a bit of scarring or inflammation maybe. It sounds like they're being really thorough. I'm sorry it's taking so long

JKSLtd Wed 11-Sep-13 09:34:31

Jetcat - how're things? hope you're keeping on smile

JetcatisBack Wed 11-Sep-13 11:58:22

Hi JKS, things are up and down really, thanks for askingsmile

We had a lovely trip to the cinema to see One Direction 3D on Saturday, DD2 was in complete awe and wonder and kept trying to cuddle Harry them, while DD1 was trying to pretend she wasn't interested - but failing miserably! A friend came with us to help out, and it was a really nice break.

Since then, DD has got more tired more frequently, is back to intermittent rambling and being unsteady, but no fits - so we're grateful for small mercies. I think.

Countdown for the MRI next week - 8 days...

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