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To still be thinking about my 3 year old's psychotic episodes last year?

(62 Posts)
Lasagneforbreakfast Fri 16-Dec-16 09:53:27

This is a long post but I hope everyone that reads it will be more aware of this horrible horrible illness and the warning signs. It can happen to anyone for no reason at all.

Last year my perfectly healthy 3 year old daughter suddenly came down with a mystery illness. She first started having unexplained seizures (some of you may remember I posted and AIBU about DH and I arguing on wether to give her medication for her "epilepsy". He wanted natural, I wanted whatever I could give her to make her better). After posting this, her symptoms quickly escalated from small quick seizures to ones that lasted for hours on end which couldn't even be stopped by a team of doctors in A&E. When finally awake she began having constant movements of her hand even while awake... it was like her hand had a life of its own. Her seizures became so bad that she had to be completely sedated and put on life support. When she woke she seemed ok but started having violent episodes where she was hitting, biting and scratching the nurses and screaming as soon as they came into the room. This alone was astonishing to us as she had always been an amazingly calm, well behaved little girl... so much I would get comments on how well behaved and smart she was while we were out.
After only a few days she became so ill she was having these "episodes" of rage continuously throughout the day and night with only 5-20mins breaks between them. She was even doing it to me and her dad and gradually lost recognition of us. She would look into the air instead of our eyes and seemed to have become locked into her own world. She no longer recognised us and spent her days and nights having the violent episodes or screaming, scared, cowering into a corner as if something was trying to get her. She would point into the air in different directions and either laugh or cry. By this time her speech had completely gone and she was not saying any words.
I remember the day I realised she could no longer understand me or follow any commands.. I was trying to give her a bath in the hospital and Was helping her take off her clothes. I told her to lift her leg up so I could take off her trousers and she just stared at me blankly. I tried several times with no response. She just looked at around the room confused as if I wasn't even there. I remember holding her in my arms and crying to the nurses that my baby couldn't understand me, that she didn't even recognise me any more.
After this her episodes got worse and by now she was self harming, biting herself all over her body and making her lips bleed. She was no longer able to get off her bed and couldn't walk or even stand up. We had to put her in nappies and she wouldn't take any food. All lines that were inserted she would rip out and the nasal tubes that were forced into her she would pull out as soon as she had and episode. She became so thin within a few weeks that she no longer looked like herself, rather like an abused, neglected and starved shell of a child. She didn't sleep at night and DH and I would take turns sleeping so we could watch her through the night. When you think of not sleeping at night, you might think she slept a few hours here and there but it was literally NO SLEEP. No 5 minute naps, NOTHING. I still can't get my head around how any human body can go through that.
No matter what medicines were given it's like nothing worked and we were bracing ourselves for her to eventually fade away.

We finally got her blood results back on the 24th December and she was diagnosed with a disease called Anti NMDA receptor encephalitis. A rare disease which can hit anyone at any time for no apparent reason. Sometimes it can be a tumor that causes the disease to kick off but sometimes the cause is never known. She was rushed to intensive care for treatment and was there for 15days.

Once awake she continued being the same but as if by a miracle she did start making tiny improvements. Every few days something would get slightly better until after 2 weeks she was only having a few episodes a day and she was able to look at us. She started walking very slowly for a few metres and she started taking soft food. She still couldn't talk but we were overjoyed at what she was able to do. We were encouraged by the doctors to take her out of the hospital for a bit to get some fresh air.. We had to take her in a speacial pushchair used for severely disabled children. I remember the looks of pity or people just plain staring at us while we walked down the road with her. I had never thought I would be in that situation in my life. I remembered the days I used to look at parents with sadness while they pushed their disabled child and I had my chubby little girl full of life skipping happily alongside me, chatting away with me and asking me a 101 questions. I wondered if I would ever be able to just see her walk normally or talk again.

Eventually she was well enough to come home. She continued getting better and on the day we came home she said "mummy, daddy" and "bus". It's been a year now and after many ups and downs she is talking almost to the same level as when she was healthy. She runs around and seems to have more energy than ever. She has some behavioural problems and is very impulsive and fidgety but anyone looking at her would never think she's been sick.

I still think so much about that time, especially now since it's been exactly a year. I lay awake at night and remember so many details and can stay there for hours reliving those days. I cry so much when I remember everything... I feel so guilty and weak having these thoughts and so much sadness seeing as she's doing so amazingly well. I've been told by everyone I speak to that I should be happy and concentrate on how she is now and be grateful that she's not worse. Which makes sense... but I don't know how to forget. I hate myself for not just being able to be happy and accept that the way she is is a million times better than how she was. I feel guilty for being sad or angry or stressed when she has tantrums out in the street and rolls around on the floor screaming and crying, when she hits or bites her siblings or me.. this is what "normal" 4 year olds do isn't it? That's what everyone says to me but I know what my little girl was like before.

Sorry for the mammoth post... I wanted to firstly get her illness out there so if anyone was ever in this situation maybe they could get diagnosed faster and also your views on how I'm feeling now a year on. Is this normal? Am I being silly?

identityhidden Fri 16-Dec-16 09:58:03

I have cared for people with encephalitis, I recognised it from your description. It's an awful, frightening condition for all concerned and my thoughts are very much with you. I think to replay it in your head isn't at all odd, it's just what we do after trauma. Have you felt able to talk to anyone professional? Health visitor etc? There are charities I think - Headway are good for this sort of thing and have a lot of advice booklets to download.

Ineverpromisedyouarosegarden Fri 16-Dec-16 09:59:56

Oh my that sounds very traumatic. It sounds like you have post traumatic stress disorder. Have you had any counselling?

flowers so glad she is doing better now. However your brain is only now beginning to process what you went through. You need professional help to deal with this.

Saucery Fri 16-Dec-16 10:03:09

You are not being silly in the least. You have all been through an incredibly traumatic time and it is a relatively short time since her acute symptoms.
I second getting in touch with Headway and do speak to your GP or HV about how you feel, as you could have elements of PTSD, which is more than understandable.
I hope your DD's health continues to improve flowers

Duckyneedsaclean Fri 16-Dec-16 10:07:37

You've all been through so much, Lasagne. Of course it's normal to still be thinking about it. If course it's normal to still be affected by it. If course it's normal to wonder what would be different.

DownWithThisSortaThing Fri 16-Dec-16 10:13:23

How awful and scary for you the whole year must have been OP.
You've been incredibly strong for your daughter and it's not surprising you're still reflecting on it and trying to process what's happened. You're not being silly at all.

I hope you can get some support for yourself and your husband now that your daughter is on the mend flowers and I hope you have a lovely Christmas together as a family.

stealtheatingtunnocks Fri 16-Dec-16 10:14:31

I was diagnosed with delayed-onset-PTSD after our son had a series of life threatening episodes. It started after a period of time when he was significantly better.

Apparently, it's not uncommon for people to be able to hold things together during crisis and then, when it's safe and the drama is more settled, to have a bit of a wobble.

I have some lovely medication, did some counselling and, 6 months on, feel like myself again. It's not entirely gone, but, I am fine in myself.

Speak to your GP, you don't need to put up with feeling like this. Really, feeling worried and revisiting stressful times are normal consequences to your experiences.

Don't put up with it. (cumeer, no one's looking <wee hug>)

RhodaBorrocks Fri 16-Dec-16 10:14:47

I also think you should look into some counselling for PTSD. YANBU to feel this way after such a traumatic experience.

One thing I will say is your DD is probably young enough that she won't have a clear memory of her illness, nor much (if any) memory of before it. I had encephalitis at a similar age and that's my experience anyway. Like you, my Mum has been far more affected by it than me. My DM really could have done with some counselling, as it took her almost 30 years to come to terms with it, so I really do urge you to find someone to speak to, possibly someone with experience of health anxiety if you are now having elements of worry over potential future illness.

I hope your DD goes from strength to strength flowers

SomewhatIdiosyncratic Fri 16-Dec-16 10:15:15

It's a normal reaction. I have no direct experience or advice, but can relate to the feeling of memories of an event coming back stronger around an anniversary (birth trauma in my case).

It's great that she's recovering, and I hope she continues to progress, but that doesn't change the fact that she and you have been through a very traumatic experience, and sometimes you need support to rationalise it.

lostinabook Fri 16-Dec-16 10:16:22

No you are not and the likelihood that such a shocking turn of events has left you still processing it and with a form of ptsd. Know that it is just your brain and heart trying to process the heartbreak.

May be worth going to the GP and asking for a referral to something like A Time to Talk so you could have a place to talk about it free from judgement and free from upsetting family

Wish you and your family the very best

Finola1step Fri 16-Dec-16 10:20:39

Thank you for posting your story *Lasagne". I've never heard of this condition so consider at least one person informed smile.

It is perfectly normal to relive such a distressing time. I agree with Inever, it would make perfect sense if you need to talk to your GP about PTSD.

roundandroundthehouses Fri 16-Dec-16 10:31:16

Jesus Christ, OP. No, no, you are not 'weak' for still thinking about those things. Please stop thinking that you are. On the contrary, the fact that you're able to go through your days with any semblance of normality at all, after a thing like that, is testament to your strength of character. Do go to your GP, because that would have knocked anybody sideways.

PacificDogwod Fri 16-Dec-16 10:35:02

OMG, of course this is haunting you - what an awful awful experience!
And I am very glad that your DD is better, as I am sure are you.

Encephalitis, whatever its origin, is a horrible illness and much feared by medical staff too.

None of us here can diagnose you with PTSD (which is a psychiatric diagnosis and requires quite skillfull assessment and will only be made if certain diagnostic criteria are met), but you clearly have post-traumatic stress and it would be absolutely reasonable for you to seek help for that.

The very first thing you must do is stop feeling guilty about how you feel - put that great big stick down!
You feel what you feel, and that is fine. Feeling guilty does not make anything better and just make you feel even worse.

I hope your DD goes from strength to strength smile

AnnieAnoniMouse Fri 16-Dec-16 10:35:46


How you're feeling is totally normal 💐

You've got her through this past year, she's almost back to how she was before her illness, but not quite the same. It feels 'safe' to look at what could have happened and be utterly terrified in a way you couldn't afford to when she was ill. It's perfectly normal to see the differences that are there (tantrums, biting etc) and be upset that she's like this now & wasn't before. But I'm sure she will grow out of it in the next few months/year. She must be struggling too. It's not really normal for 4 year olds, but it's not abnormal for 3 year olds & she's still catching up.

The important things to realise are that how you feel is TOTALLY normal and you have your darling wee girl on the way to being totally recovered from it. 'What if's' are scary, what you've been through was scary - be kind to yourself xx

SuperRainbows Fri 16-Dec-16 10:40:24

Oh, I can only begin to imagine what a traumatic experience that was for you all. Be very easy on yourself. A year is nothing, especially after what you went through. Don't feel guilty at all. Your post has filled me up.
Enjoy Christmas with your little girl and look after yourself.

Evilstepmum01 Fri 16-Dec-16 10:46:37

I've never heard of this so thank you for sharing your story. I cant believe you all had to go through this, but am glad to hear your DD has recovered.
It sounds like you;re haunted by what happened, so ask for help.

Counselling, just talking about how you felt at the time and how that affects you now. I think you probably just dealt with it on a surface level and carried on being strong, but now all that horror, fear, misery and helplessness is coming up and you need to deal with it.
flowers for you.

ThumbWitchesAbroad Fri 16-Dec-16 10:47:46

Have to agree - post traumatic stress seems the most likely scenario, you really must go to your GP and talk it out with them, see if you need meds or counselling or both.

Get a debrief from the hospital if you can, if they'll do that for you - even that might help.

But you are absolutely NOT being unreasonable. Something like that is going to stick with you for a long time, especially as you were so scared you might lose your DD - it's a hell of a journey to go through, and in such a scary fashion!

So please, go to your GP, stop worrying about how you're feeling as though you should be fine, it's absolutely NORMAL to have these reactions and feelings but it does need to be treated/ handled.

Glad your DD has improved so much - what an utterly terrifying condition and experience for all of you. thanks xx

RocketBaba Fri 16-Dec-16 10:50:30

On the scale of things you're coping well! I'd need to talk it out for a long long time, don't be hard on yourself

APlaceOnTheCouch Fri 16-Dec-16 10:53:02

Lasagne I remember your thread when you thought your DD had epilepsy. I'm so sorry to read about how her condition deteriorated but glad she is recovering well.
As PPs have said, your response seems perfectly natural but also one that you don't need to struggle with alone. Make an appointment with your GP and have a chat about how you're feeling. They may suggest medication or/and counselling. You've been through such a traumatic time. You now need support to process it. flowers

sianihedgehog Fri 16-Dec-16 10:57:58

Good Lord woman, that sounds TERRIFYING. I'm leary of armchair psychiatry, but I think PTSD would be absolutely predictable for you. I can't believe you've been left to cope with this alone. Please go to your GP and ask for a referral for some talking therapies?

AverageJosephine Fri 16-Dec-16 11:01:18

The horrific trauma of that OP. I could cry both for your little girl and at the thought of you going through that. You must have been very scared. Very scared. It sounds like you have PTSD. And maybe need help with this. It's all completely understandable. I'm so glad you have your little girl back. No parent should have to go through what you did.

Meemolly Fri 16-Dec-16 11:05:53

You need to talk it out love and feel it all in a space that is entirely your own. Please try and get some therapy, even if it is not your thing necessarily, you can get through this and come out the other side. Life as a parent is challenging enough and you have lived through something I can't even imagine. Please try and let go of the guilt of how you feel, as you have every right to feel everything you do, so please take care of yourself now and offload it. You are amazing.

Bananasinpyjamas1 Fri 16-Dec-16 11:06:40

It's really normal OP to feel like you do now. Please don't feel guilty. It is now when it is 'safe', ie your daughter is OK, that you are able to let some of your feelings out. You must have had such a shock and had to rush around hospitals on emergency mode for quite some time. That is going to take it's toll mentally on you and the whole family.

Now is the time to give yourself a bit of care too. It will get better. You may experience heightened anxiety around similar situations, like your daughter having a tantrum, that's all normal too. That's what post traumatic stress is, but if you help yourself you can make these things not turn into long term problems for you. Like other posters have said, talk to your GP, a therapist, or anyone that helps.

I'm so sorry for you and your whole family that you went through this. Has she siblings? Your DP? They may possibly be having some anxieties too. I knew someone, an adult, who suddenly went downhill like this, lost her speech, in a wheelchair. She recovered too, but it's a long struggle. flowers

YelloDraw Fri 16-Dec-16 11:12:04

OMg I remember your post about natural v mess. I am so sorry your DD was so sick.

Don't underestimate the impact this has had on you. Do you have anyone to talk to?

S1lentAllTheseYears Fri 16-Dec-16 11:14:30

I developed severe anxiety after a series of awful events (none of them individually as bad as what you describe but the cumulative effect really floored me for a while.)

I'm not surprised you are struggling. People are trying to be kind when they say things like be thankful she's getting better etc but it's not actually very helpful as you do need a chance to process this before you can start to move on.

I had psychotherapy/hypnotherapy which helped immensely. I'd really recommend it - I did try cbt on the NHS first and it didn't really help me, although it can be great for some people. I really needed time and space to talk things though. With someone who wouldn't try to fix it with platitudes or start telling me about their own experiences which is, unfortunately, what often happens with well meaning family and friends.

flowers for you and your little girl.

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