Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

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


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.

Heebiejeebie Tue 03-Sep-13 23:08:25

This may be off the wall but please ask them if they have checked NMDA antibodies. I hope she is better soon.

Fairylea Tue 03-Sep-13 23:09:34

I'm so sorry for you and your dd.

I have a brain tumour myself. It was diagnosed 3 years ago as I started producing breastmilk despite never breastfeeding any of my dc and I was having dizziness and blurred vision. I am lucky in that the tumour is not anything sinister, it is just a lump secreting too much prolactin and is treatable with medications (which I am now on). I have MRI scans every 6 months to check it hasn't grown.

Please don't panic. Things are often much more treatable than you would think. X

toffeelolly Tue 03-Sep-13 23:32:38

So sorry for you and your dd,, will be thinking of you.

JetcatisBack Wed 04-Sep-13 05:15:01

Yup, way too tired to be angry. Humphrey, I think that's it - the strain of not knowing while trying to carry on is rapidly getting too much. I guess there is no other option really.

HH she's not an in patient at the moment. Her last MRI she was, and as you say, they are done a lot quicker. This one they said could be done as an outpatient. Because our local hospital is only a small one (so not the one she gets admitted to), they only have certain days when they can pre book scans. Added to that having to wait until the radiologist can be present as she's under 18 adds to the wait as well.

Fairy, thanks for your post. Glad to hear you haven't got anything sinister, it must still be a worry for you though. I'm trying to cling on to the hope that DD may not even be in that position (not have anything at all, let alone anything sinister) but I think the strain of almost denial is also taking its toll. Hence I can't sleep.

JetcatisBack Wed 04-Sep-13 05:19:33

Sorry Heebie, I forgot to reply. I know they checked her blood last time she was in, the doc said because they were 'unusual and complicated blood tests they don't do very often', the results would take a while. It does state which tests these were on her discharge letter - I will check that tomorrow. What wasn't explained is what these tests were looking for - just that if any of them came back with a problem they would be in touch. As its been two weeks now, I'm assuming they came back normal confused

Fairylea Wed 04-Sep-13 11:00:35

Hope you managed to sleep last night.

Of course hopefully it will be nothing at all smile ... I just wanted you to know that even if they do say the dreaded words brain tumour it doesn't mean it can't be successfully treated and managed, or cured.

Do chase up her blood tests and find out what they were for. But for your own sanity don't go googling everything. You'll drive yourself crazy.

Thinking of you x

JaquelineHyde Wed 04-Sep-13 19:00:37

Bloody hell Jet, not what you wanted or needed at all!

Deep breaths, lots of cuddles and stay away from Dr Google.

Also vent on here as much or as little as you need to, the two weeks will pass much quicker than you imagine.

JetcatisBack Wed 04-Sep-13 19:37:58

Oh I have already scared myself witless by googling blush

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 smile

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 blush

JetcatisBack Wed 04-Sep-13 19:41:42

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 shock

Should anyone care to explain what all those are for wink confused

JetcatisBack Wed 04-Sep-13 19:43:56

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 smile

HumphreyCobbler Wed 04-Sep-13 20:17:55

sorry can't help but bumping

glad college was going well. Good luck for the meeting.

Lizzylou Wed 04-Sep-13 20:45:04

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!

Gosh how horrible to have to wait longer. Hope you get some answers soon xx

JKSLtd Wed 04-Sep-13 20:56:02

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 sad

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 smile

JaquelineHyde Wed 04-Sep-13 21:34:01

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.

RandomMess Wed 04-Sep-13 21:39:56

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 sad

Fairylea Wed 04-Sep-13 22:01:12

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

JetcatisBack Wed 04-Sep-13 22:22:45

Thanks guys. Not really up to posting, but I have read your kind words - they mean a lot flowers

JetcatisBack Thu 05-Sep-13 08:33:28

JKS - thank you so much for sharing your story, you DS sounds amazing, and sounds lucky as well to have a mum like yousmile 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 blush 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.

Ragusa Thu 05-Sep-13 13:32:37

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 flowers.

JKSLtd Thu 05-Sep-13 18:21:46

Aw, shucks, you're welcome! smile

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?

JetcatisBack Thu 05-Sep-13 18:27:57

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...

JKSLtd Thu 05-Sep-13 18:29:32

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!

beautifulgirls Thu 05-Sep-13 19:59:54

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.

Conina Thu 05-Sep-13 20:24:54

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.

blush 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 brew ...

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.

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...

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now