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DD having third MRI tomorrow.(57 Posts)
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.
Hi JKS, things are up and down really, thanks for asking
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...
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
Sorry to hear it was a difficult meeting jetcat 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).
Oh Jet, hope you're ok after the meeting, sorry it went badly.
sorry meeting went badly jetcat. You really don't need that right now.
Well, meeting was awful
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
Conina, your reply was very helpful thanks Reminds me to keep on keeping on! <accepts >
Jetcat - I have no helpful experience beyond looking after a sick parent but I do remember how draining and stressful and bloody scary it was dealing with hospitals and consultants when you don't always follow what the heck they're trying to tell you. If it would help you feel less scared please don't be afraid to go over and over it with the doctors. I found it easier when I had as much info possible, but my mum didn't want to know. It was just our different coping mechanisms
You sound like you're fighting battles on all fronts and I hope that your boss shapes up and is supportive.
this isnt helpful really. I just wanted to add my support for you. Coping is whst you're doing all day every day in what sound ti be very difficult circumstances. If I were there , I'd give you a ...
My daughter has a chromosomal partial deletion and this particular deletion can be a cause of autism, but also some affected children also have epilepsy with or without autism. I think recent reports talk about some MRI changes too. If you want to know more inbox me, though I am sure this is just one of a number of possible things that could be going on. I hope your news from here is good.
Well that's interesting because there is a strong link between IS and autism, so maybe there is too between other epilepsy types and autism?
We seem to have been very lucky with DS2, he has definite autistic traits but as he develops he is relaxing his rules for us, phew!
JKS, we are in the North East, so GOSH is a fair distance away. She is actually under three hospitals - our small local one, one about 20 miles away for when she is admitted, and under a consultant neurologist from a main hospital about an hour away.
DD is also autistic, and during her last stay a lot of questions were asked about how and when this was diagnosed, on what criteria etc - so I'm wondering if they are looking at specific issues thought to be as a result of ASD now being part of this. But I may be totally imagining that, mind jumping ahead or such like...
Aw, shucks, you're welcome!
We were told there was a 'bright white spot' on his MRI - that was the main area of the abnormality.
It sounds like it could have been there for a long time, possibly all the time, given the one sz 6yrs ago.
DS2's tumour formed as an embryo (Dysembryoplastic Neuroepithelial Tumour, or DNET) and grew as he grew. (ie not like cancer which grows really fast). His epilepsy specialist in GOSH thinks that maybe some developmental change occurred that asked that part of the brain to perform which sparked off the szs. But who knows...
His first visible one to us happened when he was 14months old, but he had been sleeping excessively since about 10months old. I may have even started a thread on here about it at the time.
He lost all of his skills, regressed massively and entered his own bubble. Stopped talking, nearly stopped walking by the time of the op, no fine motor skills, no communication with anyone and the only time he looked happy was as we put him back in his cot to sleep some more.
Your DD is too old for IS according to the stuff I've read, but I'm wondering if there is a similar version for older kids? What hospital are you under? Is she still able to go to GOSH or too old at 16?
I am really sorry for you and your DD: what an agonising wait. I hope when the tests are finally done that they give you some answers.
It is very hard on you when you are depressed - my DS also had to undergo tests for serious conditions when I was suffering from severe PND and it was such a dark time. You have my sympathy .
JKS - thank you so much for sharing your story, you DS sounds amazing, and sounds lucky as well to have a mum like you Him going on the theme park rides really made me smile, as that is what DD is missing the most!
Just reading a bit more from DD's notes - she has "increased signal in the left front subcortical white matter, and bilaterally symmetrical increase in signal in the white matter posterior to the lateral ventricles".
I have absolutely no idea what that means All I know is how it was explained to me in the hospital - there were "white spots" on the MRI. I guess all I can do is wait for the MRI now.
Thanks guys. Not really up to posting, but I have read your kind words - they mean a lot
I can only help a little with the blood tests as I have had similar... the elevated levels essentially show there MAY be an inflammation. However, you can have raised levels of inflammation with a throat infection or any sort of common bacterial infection (uti, chest, sinus etc etc) so it doesn't necessarily mean anything. So don't worry. The other tests are (if I am correct, and my memory may not be good) to see if the body is producing antibodies to anything that is going on in there. So essentially seeing if the body is fighting anything in itself. If nothing is raised then that is generally a good sign as there is nothing to alarm the body into a response like that. However, if the antibodies were raised that can also be a good sign because it means the immune system is working.
So what I'm trying to say is the blood tests don't really tell you much! Unfortunately you really need to wait for the mri. But the results of the blood tests were obviously not alarming or particularly worrying to the doctors or they would have said so, so that in itself must be a good sign.
Thinking of you. X
Just wanted to add I'm thinking of you, it sounds a horrendous experience and the having to wait for the scan is just awful
Do not start worrying about what other people are thinking, if they are thinking anything negative then they are twats and don't deserve to be part of yours and the DDs lives.
You may not realise it but letting normality creep back in, college, work, routine, you are doing the best thing possible for both DDs and for you.
I am no help on the medical stuff, but I will do everything I can to listen and offer support whenever you have the strength to keep chatting.
Hi there Jetcat - just wanted to let you know another person is thinking of you.
Here is my story, not sure if it will help or not, so ignore if it doesn't.
My DS had lots of MRIs a few years ago, the first didn't show anything according to our hosp but GOSH said it was too blurry to know so did their own. They saw a clear abnormality
He had Infantile Spasms - ie seizures all the time, even when we thought he was resting/sleeping. He had grids in and we saw his EEGs - think Hollywood earthquake monitor images.
After trying various meds, which didn't touch the szs, he needed to have brain surgery - which is terrifying until you realise how wonderful it can be.
He had a Coke can size non-cancerous tumour removed just before his 2nd birthday. He has had 2 random szs in the last 3.5yrs and is doing so well that I can't summarise it easily.
He talks, walks, has just started wearing pants & weeing in the loo and even goes on rides at our local theme park (ok not the scariest ones or anything, but he is only 5!).
He is at an SN school at the moment, but we & they are hopeful of him transferring out to mainstream at some point in the next few years.
I sank into a very dark black place before his surgery. I was on ADs and nothing in life looked very good. In fact MNers helped me through more than anyone in RL.
Keep sharing on here whilst you wait the agonising wait for more tests (how aggravating!) and for the results and then the decisions of what to do next.
and btw, your DD2 sounds really delightful
Gosh how horrible to have to wait longer. Hope you get some answers soon xx
You are not wrong for needing a break, not at all. And if Dd is happy then it is all good.
Hope meeting at work goes ok.
Hopefully someone can make sense of the medical info for you. But yes, no googling!
sorry can't help but bumping
glad college was going well. Good luck for the meeting.
Oh, and both CRP and ESR were elevated. I don't expect anyone to attempt any sort of diagnosis here, but I am wondering if anyone could help me understand the technical terms
Bloods were - thyroid peroxides antibodies, anti-volyage gated potassium channel antibodies, anti-NMDA receptor antibodies, amino acids and urine amino acids, organic acids, orotic acids and toxicology screen
Should anyone care to explain what all those are for
Oh I have already scared myself witless by googling
I sent out a text last night to a few people all at once, just explaining that she hadn't had the scan, it was rebooked for a couple of weeks - and no offence intended if I didn't text back. That too the pressure off a little
I have a meeting at work tomorrow re what hours I can commit to at the moment, as the boss is trying to plan rotas etc and said he doesn't want anyone to miss more than two sessions between now and Christmas. I kind of lost it a bit with him last week, and said that I didn't know if I could promise that - given the situation with DD. So I have a meeting tomorrow.
On the more positive side, DD has had a very gentle introduction to college this week, and so far it seems to be going ok. Her epilepsy nurse has very strong ties with this particular college, and there seems to be a great deal of support on offer. But, I am nervous of sending her there, not least because I feel that people are going to judge me for abandoning her or something
but I really need a break from the constant worry and watching for another fit
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