Wednesday, June 13, 2012

13 June 2012

How can it have been so long since I last posted??  Well it's great really.

I haven't been on her to update that we saw Olivia's Paediatrician the other week and he's agreed for us to bring her off her anti-epileptic medication, woohoo!!  He was going to either leave her on her existing dose or increase it as per her current weight and Alex asked if we could try taking her off it.

I didn't think Olivia's Paediatrician would want to go for that as previously we'd been told it would be a year or two after her last seizures but he told us the risks (mainly that she may end up on a higher dose to get things back under control than she was on) and we decided between us to give it a try as she's been so well for so long.

We've got to drop 10mg every 2 weeks.  She was on 40mg twice a day and is currently on 20mg twice a day and so far so good.  We've heard her stutter a few times and we're keeping an eye on it, nothing bad and only a few times so she may just be tired.

It'll be so lovely for her not to be on medication anymore and it's very hard to remember how things were when they were bad.

Thanks

Donna

Friday, January 6, 2012

6 January 2012

Woohoo, Olivia's absolutely fine so guess she was just overtired or something.  So pleased.  Maybe we can start to believe she's okay now.

Doubt we'll ever stop being paranoid though :-)

Monday, December 19, 2011

19 December 2011

Wow, I can't believe it's so long since I last updated which is always a good sign.  Olivia's been doing so well for such a long time now.  We've seen an odd absence and a few moments where we think "oh no is it happening again" but nothing has come of it which is fantastic.

We saw Olivia's Paediatrician the other week and he's really pleased with her.  He was wonderful and gave us the option of whether to up her dose (as she's gained weight) or leave it as it is for now as she's doing so well.  We chose to leave it as it is and he said we can always up it quickly just by ringing him so that's good to know.  It'll just be nice if she's weaned down naturally.

The reason I'm on here though is she's been acting unusual for the last few days.  Alex and I have both been saying we're not sure if things are going on or is she just tired or excited so I thought I should put it on here in case we're still thinking this way in a weeks time.

Olivia's getting hysterical about things which she wouldn't normally get upset about like screaming when music is playing (she loves listening to music), not liking noise, saying she wanted pizza for school then crying her eyes out that she doesn't want it.  Laying down and not wanting to be touched.  Writing her name backwards.  Slow speech (searching for the words).

I must ask her to do a drawing to see what that's like.

Hopefully it's nothing.  We'll keep a particularly close eye on her next week while we're off and let her Paediatrician know if we think her dose needs changing.  I don't think there's enough to go on yet.

Donna

Friday, June 17, 2011

17 June 2011

Olivia's been fine for a few weeks.  She's been to speech therapy for the last 2 weeks and the therapist has done some formal assessments of her development so we've got something to compare to when she's not very well.  She's also trying the technique for stammering to see if it'll help Olivia.  She's not convinced it will help and neither is the Paediatrician as it's not a normal stutter but we can at least try.

Olivia has had 2 afternoon story times at school.  She wasn't overly impressed the first week but loved the 2nd and keeps asking when she can go again so we're really pleased.

She's woken in the night screaming again the last 2 nights and has a mild stutter yesterday so I'm hoping this isn't a sign of a dip again.

Olivia keeps getting pins and needles in her feet.  She cries and says her feet are fizzing.  I mentioned it to the Paediatrician but he doesn't think there's any relevance.

Wednesday, May 11, 2011

11 May 2011

We saw Olivia's Neurologist on Wednesday.  She asked us loads of questions about Olivia's history as we hadn't seen her before.  She said it's definately epilepsy and she believes it's Electrical Status Epilepticus of Slow-wave sleep (ESES) which is a rare epilepsy syndrome.  It seems to get merged with CSWS and Landau Kleffner in a lot of the information on the internet so I'm finding it hard to find information that's specific.

She wants Olivia to have another 24 hour EEG but she said it needs to be when Olivia's bad as previously it's when she's been okay.  We're seeing her again in 4 months.

Olivia's stutter has been terrible this time.  We were on holiday so I managed to get some film of her.  It was really getting to her and one evening she was stuck on the word "not" and said it over 20 times and eventually put her hand in front of her mouth to try and stop herself.  Then she said "I not like my silly voice" and her lip was trembling and she was fighting back tears.  It broke my heart to see her so upset.

It seems to be going again not.  We're mainly only seeing it in the evening.  This time Olivia certainly wasn't as bad as last time with regard to memory loss etc.

Thanks

Donna

Wednesday, April 20, 2011

20 April 2011

Hi

We saw Olivia's Paediatrician today and I mentioned to him about Landau Kleffner Syndrome (LKS).  He thinks Olivia's symptoms fit and has sent an email to the Neurologist to point her in that direction ready for Olivia's appointment on 4th May.  It's a rare type of epilepsy and fits well with Olivia's speech and other things coming and going.

Her stutters been quite bad the last couple of days and this evening Grace showed Olivia a few flash cards and she didn't know them all yet last week she did.  I thought this one wasn't going to be as bad as last time but I'm now wondering how the next few days will go.

I've added a small clip to show Olivia's speech when she struggles to get the words out.





video

I've added a small clip to show Olivia's speech when she struggles to get the words out (please excuse the mess, we were given a load of toys/games).

Donna

Tuesday, April 12, 2011

12 April 2011

Olivia's still not right.  She's been having bad dreams again and gets so frightened she won't go back to sleep.  She had a few last night so will be tired today.

Her speech is still about the same.  She's stuttering, hesitating alot and struggling to find the words.  She's been talking slowly aswell.

She keeps getting angry too.  Not really bad but not like her at all.  She's usually so placid.

I've found a condition on the internet which sounds so right for what happens to Olivia.  I don't know whether to mention it to the Paediatrician as I know they don't like people diagnosing from the internet.  We've got Olivia's Paediatrician's appointment on 20th April and the Neurologist on 4th May so not long but what's the odds she'll be fine when we see the Neurologist!!

Wednesday, April 6, 2011

6 April 2011

Unfortunately despite Olivia being so well and her speech returning perfectly, she's showing signs of problems again.  She's forgetting words, gets stuck on sentances where she repeats the first few words over and over before she can get the rest out.  Other times she repeats parts of a word or the whole word.

She's getting frustrated with things quickly.  She's having absences.  She's incredibly cuddly with everyone including the animals.  We keep finding her laying on the floor and she doesn't want to be touched.

She's not bad but at least we know categorically now that this is something that comes and go's.  Now to find out what!!

Donna

Monday, February 21, 2011

21 February 2011

Oops it's been a while again!  Olivia had her Sleep Deprived EEG on Friday 11th Feb.  We had to keep her up until 10pm and wake her at 4am.  She had to stay awake until her EEG at 11am in Southampton which she did and once the wires were attached she fell asleep which was just what they wanted.  She did brilliantly, bless her.

The only unfortunate thing is that Olivia has been really alert and with-it since the week before so I'd be surprised if it'll show anything.

Over the last couple of weeks her speech and memory has improved dramatically, even week to week you can see the difference.  She's now using her connecting words (saying "duh" for "the" but that's normal) and knows her colours and what things are called.

She did have a long absence this morning though (hence why I've even thought to come on here).  Grace noticed and called me and was frantically waving her hands in front of Livvie's eyes.  She said she could tell when she walked in to the room and looked at Olivia as she was staring.  She then tried to get her attention, then called me and when I went up to Olivia I could see she wasn't focusing or responding to us.  I asked if she was okay a few times then she was back with us.  It didn't seem to bother her but she was quite quiet afterwards.

Friday, January 21, 2011

21 January 2011

We went to see Olivia's Paediatrician on Wednesday as she's had a couple of small issues over the last couple of weeks.  The Sunday before last her stutter was dreadful.  It hasn't been like that for a long time and she really couldn't talk.  It's been coming and going since.

Her absences have been seen a few times too but not so much in the last week.

We're worried about her development.  Her speech is like a toddlers (although we're sure it was better before) and our childminder told us she's concerned too.  Olivia's not using any connecting words (the, and etc) and can't remember alot of words such as kettle, tv, handle, ladder.  She's not so good naming colours and numbers either and is easily confused.

The Paediatrician asked Olivia some questions then said he's going to refer her to the Paediatric Neurologist and also request a sleep deprived EEG.  All this should happen within the next 3 months.  He said he's going to write to the Neurologist to ask if he can think of anything rare that could be mimicing epilepsy as he said it's a strange case and he's not convinced it's epilepsy.

So basically we now feel like we're back at the beginning diagnosis wise, although Olivia's much better than she was.  He also said she's at the top end of the Lamictal so he doesn't want to increase it.

Dx

Monday, November 22, 2010

22 November 2010

Okay we've finally come to the decision to up Olivia's Lamictal. We're going to up her dose by another 5mg twice daily.

Then way we can see what she's like in 2 weeks and then I'll phone her Paediatrician if she's still not any better.
He said if things don't improve after this increase he will request another EEG not that I imagine it'll show anything.
Fingers crossed this increase will stop her seizures.
Donna

Sunday, November 21, 2010

21 November 2010

Well we upped Olivia's dose by 5mg twice daily and initially it looked like it had helped but we're noticing occurrences almost daily at the moment, mainly absences, confusing/forgetting words and falling over but a couple of days ago our childminder wasn't able to rouse her in the buggy (last year before her seizures were controlled her eyes would roll and then she would to pass out for a few minutes) and when she woke up she couldn't stand up for a while and was really unsteady after. Alex was there by then and all evening she said she was tired.


Yesterday she seemed really bright but today she's been awful since she woke up. 

When she woke up she went to see Grace then after a few minutes went and stood on the landing.  She kept shaking her toy rabbit but wouldn't respond to us calling her.  This went on for ages and then she laid curled in a ball on the floor and was groaning.  I told Alex I didn't think she was right and went and picked her up.

I sat her on our bed and asked if she was alright and she was talking but it was slowed down.  She talked some gibberish mid sentence then talked slow motion again.

Later in the day we went out for a meal and whilst she was sat with all the children at the table she had an obvious absence.

I think we need to up her dose again but at the same time I'm loath to do it.  I just keep hoping it'll go away which is stupid.

Donna

Thursday, November 4, 2010

4 November 2010

Olivia fell over earlier. Unfortunately I only saw her out of the corner of my eye so I don't know what happened (she is falling over more often again whereas she wasn't) and I picked her up and cuddled her. We were near the kettle and she said "mummy what's that called?". She keeps doing it after something has happened.


Donna

Tuesday, November 2, 2010

2 November 2010

Yesterday she was sitting on my knee watching tv when she started heavy breathing. She then started blinking far too often and her mouth was twitching at one side (this is something which seems to happen when she has some seizures). Her head was in the direction of the tv but her eyes looked like they were flitting all over the place.

I told the Paediatrician the different things she's been doing and he said we should up her Lamotrigine 5mg twice daily and leave it for the next 2 weeks to see how she goes.  If her seizures stop then we leave it at that dose, if not we up it again by 5mg twice daily.

He said we should have a plan for if the above doesn't work so if that happens he wants Olivia to have another EEG, then maybe try another drug.

He wants to see her on 5 Jan, 2 months rather than her usual 3 as things aren't right.

I asked about her immunisations.  He said it may cause her to have more/stronger seizures as she is likely to have a raised temperature and be under the weather from the jabs but there's no proof to say that it will worsen or prolong her seizures after the initial few days.  He said obviously if she were to get ill from the actual diseases then she could be worse.

Dx

Saturday, October 30, 2010

30 October 2010

I didn't take Olivia for her jabs after all.  I spoke to our Doctors surgery and they advised speaking to Olivia's Paediatrician about her vaccinations as there are a lot in one go, in each arm.

Unfortunately she's not doing so well either now so I guess it's just as well I didn't go ahead with the jabs or I'd have thought it was due to that.

For about 3 weeks now she's been staring again.  Not very often but she's definately been doing it.  In the car the other day she was staring and opening and closing her mouth but without purpose.

Yesterday she opened the fridge door and just stood there motionless staring.

The other day she kept looking at the tv then at our big photo on the fireplace, then back at the tv.  This continued for a while until she asked "is that the tv?" (pointing at the tv) and I said yes and she said "is it called tv?".  She was really confused.

She's also falling over more often again and her stutters been worse for a while.



I've added these photo's to show the difference between Olivia as she is normally and the last photo shows her when she's drifted off.  I snapped it but wasn't sure it would show how she loses her expression and her eye's aren't focused.
We're seeing her Paediatrician on Tuesday so hopefully he'll up her meds and stop this before it gets any worse.

Donna

Wednesday, September 8, 2010

8 September 2010

Olivia's still really well.  So many people are noticing how full of beans she is now.

I've got to take her for her MMR next week and I suddenly wondered this morning if it could set her seizures off again.  Since she's been so well for so long it would be dreadful but at the same time you have to give them the vaccinations as the illnesses themselves could cause her problems.

Please please let her be okay!!

Dx

Wednesday, July 28, 2010

28 July 2010

Olivia is amazing!!  She's so full of life and has not been having any symptoms.

She's got to continue on her epilepsy medication for 2 years but she's back with us properly and that's all we care about.  She showed off in front of her Paediatrician and knew her colours, could do jigsaws etc which she hasn't done when we've been there previously.

She's so funny and an absolute joy.

Thanks for taking the time to read my posts and for following Olivia's journey.

Donna x

Friday, June 18, 2010

18 June 2010

For the first time since July last year when all this started Olivia is 'with it'.  She's singing songs, learning her ABC's and remembers her numbers alot more.  She's got her great sense of humour back and doesn't sit still for a second not to watch anything or have a story.

She's been having some dramatic age appropriate tantrums and is pushing boundries constantly.

Please let it continue!!!

Wednesday, June 2, 2010

2 June 2010

I'm sorry!!!  I'm dreadful at updating this blog now.

On 9th February I emailed the Hampshire PCT to instigate an investigation by them as I was advised by a very helpful person that they deal with things from a different angle than the Royal Pharmaceutical Society.  One of the main things to come out of it was they said the Pharmacist's statement that his stock records tallied was not true.  I've given the Pharmacy Inspector a copy of the letter stating that as this was his strongest evidence.

We had a meeting with the Pharmacist to go through what we believed happened and get his response.  He showed us copies of other prescriptions issued that day (obscuring patients details of course) and there were several 75mg issued the same day as Olivia's so yet again we said that surely there was the chance that he could have given someone else the 30mg and Olivia the 75mg.

We asked to see the boxes of the 30mg & 75mg and both Alex and I knew straight away which we'd been given (not that there was any doubt from our point of view anyway but it all helps us to know to carry on the fight).

He showed us where the Tamiflu was stored and basically it was a cardboard box on the floor with loads of other stuff piled on top.  The room they were in was an absolute mess.

He said that he now has a mark against his name but I said that MORE IMPORTANTLY our daughter is no longer the same child she used to be and we'd all been through hell!!!

The Pharmacy Inspector came and took another statement from me and Alex (independently) based on our visit to the Pharmacy.  We've not heard any more about the case but we do know that nothing is ever going to come of this but at least I know I've done my best to try to get justice for Olivia.

Anyway an update on Olivia.  She's still having absences, stuttering occasionally and forgetting obvious words like toothbrush for example.  She can still be unsteady on her feet (bearing in mind she's 3 yrs & 3 mths) and won't walk very far at all.

We saw the Paediatrician in March and he wanted to leave her medication as it was as she's not bad compared to how she was at the later part of last year and he said the medication can have some horrible side effects so it's getting the balance right.

We're seeing him again at the end of this month and the Neurologist next month.  I've already started making a list of questions to ask the Neurologist about some of Olivia's behaviour, like not walking far.

I will try to update more often :-)

Tuesday, February 9, 2010

9 February 2010

I had a call from the Pharmacy Inspector a couple of weeks ago to say that the Pharmacist is saying now that he hasn't made a mistake.  I'm fuming!!!!!  We were told the fact he'd made the mistake wasn't being disputed and now 5 months down the line he's managed to find that his stock records tally!!!  I've a right mind to go and see him and tell him exactly what we've been through to make him see what he did!!!

All we ever wanted was an apology.  I told the inspector that from the start.  We knew we'd never be able to prove that the overdose has caused all of Olivia's problems. 
The inspector said that as we haven't got the packet, it won't go to a Tribunal so basically he's gotten away with making a huge mistake.  Apparently she's had words with him but then he's made that other mistake since then with labelling the box up with the wrong strength so he clearly doesn't take any care.

I hate people who lie! If you make a mistake then put your hands up and say you've made a mistake.

Anyway, sorry about that big rant.  Olivia's still okay.  She's been having some staring episodes since the end of last week and I'm wondering if I should tell the Paediatrician so he can adjust her dose before things kick off again.  He did say the absences are to be watched.  The trouble is we keep kidding ourselves that she's daydreaming :-(

Friday, January 22, 2010

22 January 2010

Touch wood Olivia's still fine.  I'm taking her to the Doctors on Saturday as she's been limping.  She did do this when she wasn't well on and off but we put it down to all the strange things she was doing but maybe it wasn't related.  She's not got any pain, just can't walk properly.

I can't believe I haven't written that I'm persuing the Tamiflu/Epilepy line still.  On many of the Epilepsy sites people are saying that they'd been seizure free for years and then took Tamiflu and started having seizures which has knocked them for six.

Could there be a link here with the fact that Olivia developed Epilepsy after  taking the overdose of Tamiflu?  I'm going to carry on exploring this.

Friday, January 15, 2010

15 January 2010

We took Olivia to the hospital on Tuesday.  The Paediatrician was pleased to hear she'd been so well.  He said to keep her on the same dose of Lamotrigine but has stopped her Epilim as she was on such a small amount.

We asked if they're likely to try reducing her medication but he said no.  She's got to be seizure free for 2 years.  I asked if that just ment the passing out ones etc rather than the absences but he said they count too as they alter her speech, concentration, movement etc.  I was quite surprised as all though I'd been worried about them in the beginning they were nothing compared to the other types and we don't pay much attention to them.

She's still be really well (touch wood!!) and it's fantastic.

Wednesday, January 6, 2010

6 January 2010

I'm pleased to say that during our holiday to Florida Olivia's got better and better.  We got back on New Years day and the following 2 days we noticed how well she was.  She keeps sounding so cute when she talks and the things she's saying.  We believe she's back to normal.

She's had a few absences but that's all, thank goodness.  I've been a bit scared to say it as that tends to be when things go wrong again.

We've truely got Olivia back as she was.  We've got an appointment with her Paediatrician on 12 January so we'll see whether he reduces her medication or leaves it alone for the time being.

Saturday, December 19, 2009

19 December 2009

Whoops!!  I didn't realise it had been so long since I last updated my blog.

Olivia's been okay.  She's been having some absences but no passing out seizures or falling on her face which is great news.  She's been quite dazed this last couple of weeks but no specific things to mention.

Thursday, December 10, 2009

10 December 2009

Poor Olivia's got a sore throat and cough.  She wasn't too bad yesterday and got better throughout the day but this morning she was looking pretty rotten.  She tried to eat her breakfast and cried because it hurt to swallow.

She had quite a long absence sat on my bed this morning so I hope she'll be okay today.  It was an unmistakable one.

Tuesday, December 8, 2009

8 December 2009

I've got my fingers crossed as I write this but Olivia's been fine since Thursday last week.  Please let it continue. 

The Neurologist never did phone back despite me chasing the call twice!! I'm guessing the medication can't be making Olivia's problems worse though as it wouldn't have settled down.

Friday, December 4, 2009

4 December 2009

I haven't posted for a few days as I was waiting for the Neurologist to phone back and then I would update about everything but he hasn't called.  I chased it up again yesterday only to be told he was in Portsmouth all day.

I phoned the Epilepsy helpline on Tuesday about 4pm and told them we were travelling and what to do about Olivia's medication and the fact that there will be a time difference.  Basically the lady said to start adjusting the times of the doses and the same when we return.

I told her about Olivia falling over now and she asked what medication she's on.  I told her and she said I needed to speak to an Epilepsy specialist to see if they thought the Lamictal was making her worse as it can happen but is rare.  I phoned the Neurologists secretary but she must have left for the day so on Wednesday morning I phoned again.  I told her everything which had happened and what the Epilepsy helpline had said and she said the Neurologist would phone when he had the chance but he hasn't as yet.

Olivia's been pretty much okay bar some twitching in bed and on Wednesday she had a funny turn where she was moaning and crying but would not talk to us.  She wanted a cuddle so I lifted her up and her eyes went all glazed and she was staring.  Then after quite some time her face started twitching (near her mouth) and that had happened on Sunday when she went funny in the shop.

Tuesday, December 1, 2009

1 December 2009

I phoned the Paediatrician yesterday morning and told him that Olivia keeps falling.  I'd checked with our Childminder and she said she's not putting her arms out to stop herself, she's just falling face first.

The Paediatrician has upped her Lamictal and wants me to phone him on Friday to say how she's been.

I said I'm worried about her seizures as they're changing and asked if it was just how it goes and he said no.  He said it's unusual.  He said Olivia's Epilepsy is not typical.

Olivia fell face first a couple of times today at the Childminders.

Sunday, November 29, 2009

29 November 2009

Poor Olivia hasn't had a good day today.  She had one of her passing out seizures in the car and then when we were shopping we were stood looking at some bags and she bent forwards and looked like she was going to do a roly-poly (which she wouldn't normally do let alone in the middle of a shop) and then fell forward and banged her head on the floor.  She was really shocked by it and I picked her up.  She didn't want me to put her down for ages afterwards.

A couple of days ago she kept falling over at the Childminders and she thought it was strange.  I'm going to speak to the Paediatrician tomorrow if I can to see if he thinks this is another new kind of seizure.

I might ask him how long he thinks it'll take her new dose of medicine to kick in.

Wednesday, November 25, 2009

25 November 2009

I went on a First Aid course today held at Grace's school.  It was fantastic and has made me feel much more confident with regard to Olivia's seizures and if something happened like if her tongue blocked her airway. 

Until the course, it hadn't dawned on me that when Olivia passes out during a seizure she's actually unconsious.  It sounds worse like that.

I phoned the Pharmacy Inspector back to say we do want to complain about the wrong label on the packaging for her latest prescription.  Although it didn't cause any harm it shows that they aren't being more careful.  Everyone I've spoken to (including the First Aider who was a Nurse/Ward Sister for 20 years) said we should officially complain about it to have it added to our existing case.

I still can't believe the Pharmacist didn't say anything on the phone.  He could have asked to meet us or anything.

Tuesday, November 24, 2009

24 November 2009

Olivia's gotten off to a bad start this morning.  I arrived at the childminders in the car and when I got out to get the girls out Olivia had her eyes closed and I thought she was pretending to be asleep so I said "are you asleep?" and she smiled and then I tickled her and she didn't respond  I lifted her out of the car and she hugged me really tightly and when I put her down she nearly fell over.  She still had her eyes closed and was swaying and trying to open her eyes.

I asked if she was alright and did she want Grace to hold her hand as she said yes.  They walked slowly to the door.  When we went inside, I told our childminder what had happened and she said "look at her" and she was staring and rocking on her feet.  She cuddled her then our childminder put her in the buggy and she stayed staring for such a long time (scary dark eyes which I saw the other night).  She was waving and blowing kisses to me out of the window when I left which helped alot.

Monday, November 23, 2009

23 November 2009

On Friday I collected Olivia's prescription from the same Pharmacy for her 25mg Lamictal tablets and when I got home realised the label said 5mg Lamictal.

I phoned the Pharmacy Inspector and told her and she said if I want her to take this into consideration then we have to make another formal complaint but I told her I won't be doing that.  She said she will speak to them though.  I can't believe they haven't tightened up their procedures after what happened to Olivia.

She said the investigations nearly done it's now got to go to the panel to decide what happens from there.

I phoned the Pharmacist (the inspector asked me to) and told him about the latest mistake and he said it was a labelling error and that I can take the box back in to have the correct label put on.  I also told him Olivia is the child who had the adult dose of Tamiflu and he said 'oh, okay' and that was it.

Friday, November 20, 2009

20 November 2009

Well now I'm really disappointed.  I spoke to the Toxicologist (he was lovely and sounded like he wished he could help) and he said there wouldn't be anything they could do and he can't even think of anywhere for us to go next with this so it looks like I'm going to have to give up.

Why can't any one see that it might not be some freaky coincidence that she's suddenly developed Epilepsy following suspected swine flu but may be the adult dose of Tamiflu for a little 2.5 year old who had recovered from the flu for 3-4 days before having the seizures which just happened to be 4 days after taking too much Tamiflu.

I'm not in a happy place right now.  Just hope Livvie's been okay today.  Her stutter was so bad yesterday and this morning.  Grace keeps asking me what she's saying.

Thursday, November 19, 2009

19 November 2009

I've emailed a couple of Toxicologists today to ask if they think they could prove any link beween the Tamiflu overdose and Olivia's neurological problems and I'm waiting to hear back.  Please, please, please let them be able to help!!!

18 November 2009

Our childminder phoned today to say Olivia had passed out in the buggy this morning after saying she wanted mummy and moaning for a while.

We still feel there are a lot of unanswered questions.  How come she suddenly developed Epilepsy after having flu-like symptoms but was fine for 3 or 4 days before the seizures started but after the Tamiflu overdose.  All we have to hope for is some other poor mite has an overdose to back up our case and that's awful.

I forgot to say that the Neurologist is going to talk to the EEG department to see if it's worth repeating the 24 hour EEG.

17 November 2009

We saw the Neurologist on Tuesday.  He did say different things than the Paediatrician.

He says Olivia has Epilepsy which we'd always been told it wasn't.  He's increased her Lamotrigine to 25mg twice daily which is quite an increase from 10mg twice daily.  Apparently we need to watch out for a rash as it can be life threatening and there's more chance of it happening if you're taking Valproate (which Olivia is) and if you have a significant increase in the dosage, although it is rare.

We asked him about the Tamiflu and he said it wasn't much of an overdose and there is a margin built in to the dosage.  We left him with some papers which have been published in the Lancet backing up problems with Tamiflu and a letter from a Japanese Professor I've been talking to who has studied the adverse effects of Tamiflu and believes Olivia's problems are connected to her overdose.  So fingers crossed he'll read it all and agree.

Olivia had a pass-out (wish we knew the names for these things) seizure on Tuesday on the way back from seeing the Neurologist in the car.  She was making a groaning noise for a while then went.  She woke up a few minutes later.

Sunday, November 15, 2009

15 November 2009

Well touch wood nothing to report at the moment.  Olivia's stutters still pretty bad but other than that she's on good form.  She woke in the night screaming and won't even let you touch her when she's like that so I thought we might be in for a bad day but luckily not.

The Solicitor that a friend has put me in touch with is going to phone tomorrow so we can see if there is a case against the Pharmacy.

Friday, November 13, 2009

13 November 2009

Olivia woke up at the Childminders crying yesterday when she was having her afternoon nap and has been stuttering particularly badly again since.  We went out for the evening to celebrate Grace's (our other daughter) 6th birthday and the person who works there was copying her stutter thinking she was playing.  Alex and I were in agony wondering whether to say anything or not.  We're quite used to it coming and going (although it was bad last night) and forget that other people aren't used to it.

We find when we're out people stop and stare at her.  It's horrible.

Thursday, November 12, 2009

11 November 2009

She'd not been too bad, mainly that she was left with a stutter again after a seizure a couple of weeks ago but she had a really bad day on Monday.

I saw her new type of seizure for the first time (usually our childminder gets that pleasure!, bless her). She was in the car and her eyes just kept rolling up in to her head and she was blinking as though she was trying to correct it. Eventually she zonked out completely and looked peaceful then about a minute later spoke as though nothing had happened at all.

It was horrible to see but at least we're seeing the Neurologist on Tuesday.

15 October 2009

Livvie's gone back downhill again. Not that I'm overly surprised but I was hoping she was better.

She's got an ambulatory EEG booked for 22 October.

Also had the meeting with the Pharmacy Regulatory Society and the lady was lovely. Could be a couple of months before we hear anything more about it.

22 October 2009

Olivia was as good as gold having the wires glued to her head and the recorder is huge and heavy so she has to carry it around in a rucksack.

She doesn't seem bothered by it all which is good. She has to go back tomorrow to have it all taken off but we won't know the results for a few weeks.

It's weird hoping she'll have a seizure.

13 October 2009

Hurray!!!! Olivia's been pretty much okay for 6 days now. She's had the odd seizure and some stuttering but nothing compared to how she has been. Fingers crossed this will continue.

6 October 2009

First the hospital cancelled Olivia's EEG yesterday and now the Pharmacy Inspectors cancelled today!!! I'm going to start shouting soon!

I'm going to be brave today and ask the Paediatrician to refer Olivia to a Paediatric Neurologist.

Well that didn't go down too well!!! The Paediatrician didn't take too kindly to me asking to refer Olivia to a Neurologist. He kept saying that I was aware he was speaking to a Neurologist and I said I just thought it might be beneficial to Olivia for her to see a Neurologist and for one to see her

He said it'll be weeks before she's seen and then added that his colleague who saw her the other day didn't think there was anything wrong with her!!!! I said "ok, thank you" and that was the end of that. I could cry! He's seen her seizures and confirmed them GGGRRRRRRRR!!!!!!

I've phoned back his Secretary and said we need more Epilim but that depends on whether he shares his colleagues views and thinks she even needs it. She said she'll talk to him and phone back, probably tomorrow, and I asked her if she can ask him to refer Livvie to an Epilepsy Clinic aswell. I got a bit upset though so hopefully she could understand what I was saying

5 October 2009

Bloody Hospital. We've waited 8 weeks for an appointment (okay so Winchester did arrange a private EEG in between) and now they've rung and cancelled as the Doctor has phoned in sick. They've given her 20th October as the next date.

I had a call from our childminder saying Olivia was in the buggy coming back from school and suddenly her head went back and she was like she was in deep sleep. She lifted her arms and they were all floppy and tried to wake her but couldn't. She said she checked to make sure she was breathing and after 3 minutes she suddenly sat up and was wide awake.

I phoned the Paediatrician and he said it definately wouldn't be related to her new medicine but is another type of seizure. I asked if we just sit back and wait for her to come around like the others and he said yes.

He said he's sorry but there is nothing more they can do at the moment as they have to wait to see if the new drug is going to work and that'll be weeks yet.

I'm just so annoyed at Southampton. It would have been a perfect day to have an EEG as she's having seizures. Her speech still isn't properly back to normal from the funny goings on the other day yet either.

Hey ho! We're serioulsly worrying her seizures are getting worse as they seem to be changing all the time.

3 October 2009

I was on a bit of a downer but I'm more positive again now. She seems quite a bit better today albeit not completely back to normal so it could well be that the medicine was too high a dose for her to tolerate.

She's now on Lamotrigine half a tablet once a day and in 14 days we have to up it to a whole tablet. She has to continue on the Epilim until her dose of the new one's working and then they can start to reduce the Epilim to make sure it doesn't cause any problems. Apparently they can only make one change at a time to see what effect it has which makes sense.

We've decided that when we next see the Paediatrician we're going to ask him to refer us to a Neurologist. Just hope he doesn't take offence as he is nice but Olivia's more important. I just don't find that kind of thing very easy.

2 October 2009

She does seem better today than yesterday. I was really disappointed with hospital yesterday and ended up in tears in the evening. Because it was a Paediatric Neurologist I spoke to Wednesday evening she really seemed to understand everything I was saying and I thought that's who we were seeing yesterday but it wasn't.

Without realising I got myhopes up. Olivia's got a standard EEG at Southampton on Monday. I'm just fed up of all this now for Olivia's sake.

1 October 2009

It was basically a waste of time today.

Last night I felt really positive as it was a Paediatric Neurologist I was talking to and she was listening to everything I said but today we were back to Paediatricians and despite her looking awful they did their hammer tests (repeatedly on her feet as those weren't responding as they'd have liked) and blood pressure etc and said she seemed fine.

I'm so disappointed. I really can't see how they couldn't see she wasn't right.

They do think it could be related to her medicine, that maybe she can't tolerate that level of it so we've gone back down to 5mls twice daily to see if she settles.

She's been quite aggressive the last couple of days too with is not like Olivia at all.She had to have blood taken again and she only had some taken on Monday but for different things. She crys and struggles the whole time now as she knows what's coming.

It's horrible.I'm just fed up tonight and can't see us ever getting her sorted. :-(

30 September 2009

Olivia's not been good today. I ended up phoning the hospital for their advice.

Her eyelids have been half closed all day and she's not had great control of her eyes.

She's also been staggering a bit when she has stood up but spent most of the day sitting without playing. She's so pale.

We've got to take her in for 10.30am so they can monitor her and decide if it's the medication.

29 September 2009

They've upped Livvie's Epilim again to the max dose (we thought she was already on the max??) and are trying to arrange either a sleep deprived EEG or a 24 hour mobile EEG. Should hear in a couple of days.

She's got a stinking cold/fever at the moment so that's not helping her in general and us to see if her symptoms are changing.

27 September 2009

Just to confirm I've mentioned all the strange things that Olivia experiences. There's just such a wide range of things that happen and they all come and go with no obvious reason. Some only occur every few weeks and some are every few days:

Seizures (absent for approx 3 mins)
Severe stutter
Using the wrong words
Confusion
Asking for someone who's stood/sat right next to her
Not taking a breath at night during sleep
Dragging her left leg behind her
Droopy left side of mouth and slurred speech
Zombie state for varying time from a few mins to all day

25 September 2009

Olivia's still not right. Yesterday and today she's either talking non-stop gibberish or using the wrong words and her stutters come back really bad.

Spoke to the Paediatrician and upped her dose to the max one. Seeing him on Monday and if the meds not worked by then he's going to phone the Neurologist while we're there to see what to do next.

24 September 2009

Olivia wasn't too bad in the morning, her stutter was back but she fell asleep in the car after meeting friends and has been talking utter nonsense since.

The childminder said she was struggling to understand her and when we picked her up (I worked from home this afternoon) she's been muddling her language big time.

20 September 2009

Well after hoping the medicine was helping as she seemed to show some improvement she's got back downhill again and had about 5 seizures lasting around 2-3 minutes yesterday.

She was back to sitting and not doing anything again whereas she'd started to play independently a few days ago. It's always up and down so it's hard to know how she's feeling.

We should have upped her medicine again yesterday but we have to speak to the Paediatrician first and he hasn't been on call this weekend so I'll phone him tomorrow. We haven't had the results of her bloodtests either so didn't think we should just do it.

I spoke to the person investigating the Pharmacy error and she was shocked that Olivia took the whole dose. She thought she'd only taken one or two tablets. She's coming to take a statement from me and Alex at the beginning of October.

16 September 2009

We had her appointment on Monday and the Paediatrician upped her dose. We've got to up it every 5 days until she's on 5ml Epilim twice daily. If that doesn't work they're going to try another medicine and maybe do some more tests.

Olivia's appointment was at 4pm and we got home at 8.45pm. They wanted a urine sample which she provided in the potty about an hour after and then they wanted to take some blood samples.
They'd put the magic cream on but when the nurse tried to get blood Olivia's vein collapsed so she didn't want to try again. She said a Doctor was on the way.

A couple of hours later a Doctor came but by then the magic cream had worn off so poor Olivia was crying her eyes out and they have several vials to fill. The Doctor also had trouble and eventually didn't bother with the needle and just squeezed the blood out of her hand into a vial. It was horrible.

On the way home she kept saying her hand was hurting and it was swollen, even the following day.
The trouble is she's going to have to have blood taken a few times on this medicine and no way in the world are they doing it like that again.

14 September 2009

She's still the same, up and down. The medication doesn't seem to have done anything but we're going back to the Paediatrician later today and we think he's going to increase it.

13 September 2009

Olivia's not improved over the weekend. She's still have the absences and her stutter is really bad again but at least we can tell the Doctor tomorrow

11 September 2009

I've been getting a bit upset about it all this week (not actually crying but getting choked if I talk about it). People keep telling me it could have been worse (meaning when they thought it was a brain tumour) but in my eyes it could be a damn site better too.

I want Olivia back as she was and it breaks my heart that she's not the same.

I'm sure once we find out what's going on (if we ever will) then I'll deal with it fine but it's this limbo land that I hate.

10 September 2009

Olivia had a couple of absences this morning but I'm not sure how quickly the medication should work. I know the Paediatrician is going to up her dose next week when we see him.

She seemed a lot better this evening but I'm too scared to believe she might be after the disappointment before when she seemed better then went downhill so quickly again

9 September 2009

Olivia's had a really bad day again where she was like a zombie. Apparently no-one could understand her at toddlers. That was her first time back since it all happened so people were shocked at the difference in her.

The Paediatrician phoned yesterday to say he'd spoken to the Neurologist who think things are much simpler than the Paediatrician thought.

He has said to treat Olivia for Epilepsy with Epilim and see how that goes.

The Paediatrician said he thought it was a rare brain problem. They discussed doing a 48 hour portable EEG but he said it could only have backed up the fact that somethings wrong which they already know as Alex took some video up to the hospital to show her seizures. We have to take her back to the Paediatrician next week to be reviewed and see if the medicine is helping.

Basically they're saying it's hard to say what's caused the problem and what exactly the problem is so they're hoping this will work.I bought one of those Angelcare baby monitors yesterday that sound an alarm if they stop breathing as several nights when I've sat with her, she doesn't breath for ages and then takes a really big breath.

I told the Paediatrician hoping he'd say children do that but he didn't. I haven't been able to sleep very well lately but I did last night.

7 September 2009

We managed to get some film of her absences yesterday so the Paediatrician asked us to take it to him so Alex did that today. He said they're definately absences and it helps that he's seen them but now's the long job to find out why they're happening

5 September 2009

We decided to get Olivia as tired as we could to try and induce one of her episodes as the Doctors really need to see it happen so I had to film her all day but sods law nothing happened. I'm going to set the camera up when I go to bed and see if anything happens at night which we've been suspecting does sometimes. Olivia had her EEG on Thursday but her Paediatrician phoned on Friday to say it was normal so he's going to speak to the experts and see if they want to do a sleep deprived EEG.

He's also going to speak to some Neurologists at Southampton as he's out of ideas as to what's going on. Although we believed they were going down the route of Epilepsy he said it's not something that they're seriously considering otherwise they wouldn't have done the MRI.

He said they're looking at whether there are some connection problems in her brain but he said just as importantly is to find out why it's happened.

Olivia has been fine the last few days except for her stutter.

2 September 2009

Olivia's not quite so bad today although she woke up screaming and sobbing and kicking her legs. She wouldn't let me touch her for quite a while and when she did she cuddled me for ages. She was in a dazed sort of state for about an hour but hasn't been too bad for the rest of the day.

I spoke to a lady at the British Epilepsy helpline today and she said they don't sound like absent seizures but after we'd spoken for a while she said she believes Olivia is having Complex Partial Seizures. She said we really need to be referred to an Epilepsy specialist and that our Paediatrician obviously isn't familiar with this as many of the things he said weren't relevant she said are relevant.

She said we need to go back to our Doctor and ask to be referred to a specialist which I'll do tomorrow morning.I feel like I learned more from my conversation with her than the last 5 weeks with the Paediatrician. She also said it sounds as though Olivia's having them at night too which Alex and I suspected.

The lady said we didn't need to have waited for an EEG to be diagnosed with Epilepsy if Olivia had seen a specialist already but as it's booked for tomorrow it's not too bad. She said it will unlikely tell us anything though.

1 September 2009

We saw the Paediatrician today and told him that Olivia's absence seizures are back and so is her stutter. We told him the two have to be related as they both disappeared last week and are now both back with a vengence. They've booked her an emergency EEG for Thursday at Portsmouth Hosp.

She can hardly speak at times. Sometimes she stops after about 15 times trying to say the same word and says "I not know it!" It's horrible and we don't know what to do to help her.

21 August 2009

We're happy to have Olivia back at home. She seems more like her old self so fingers crossed that'll continue.

20 August 2009

They monitored Olivia today but apart for a couple of small absences which we told the Paediatrician caused her stutter to get worse again there wasn't much to see.

We told the Paediatrician that earlier in the day my husband had bought Olivia a In the Night Garden magazine (which are her favourite characters) and she couldn't name any of them. I even tried bribing her with TicTacs. We were both concerned by this. We also told a nurse and the nurse pointed to an elephant and Oliva couldn't name it. The nurse said "big nose" to try and prompt her and she just repeated "big nose" as if it was it's name.

He said it was probably related to her age and that you can look in to things too much. He also dismissed the stutter and said he wasn't worried about it and that it wasn't linked to the other things going on.

I also asked him if he thought Olivia's problems could be to do with the Tamiflu overdose and he said there was no evidence to suggest it was.

19 August 2009

We took Olivia to Hospital and were seen by a Paediatrician about 12ish. She said they had decided to do an MRI to rule out a brain tumour. That was a hell of a shock.

She had an MRI at about 3.30pm. I went with her to be sedated. It was awful. They couldn't get a line in so I had to hold her as they put the gas in front of her nose for a while then put the mask over her face. Once she went all floppy we lifted her on to the trolley and I kissed her and they took me out. It was horrible leaving her.

Luckily the Consultant came back to us quickly to say it was normal. He's apparently gone to the scan and looked at the results then and there. We waited a while for Olivia to come round.

They want to monitor her for the rest of the day and tomorrow and then probably let her go.

18 August 2009

I phoned my GP (she's brilliant) and she said she'd speak to the Paediatrician and get back to us. She phoned within 10 mins to say go to the hospital.

When it was Olivia's turn to be seen about 3 hours later the Paediatricians did loads of checks and heard her stutter and said they were worried and that she needed a CT or MRI as they were worried something was going on with her brain. They wanted us to bring Olivia back at 10am and expect to stay in for 2-3 days.

They'll apparently try without sedating her first as she's so dazed alot of the time, then with a low sedation and then with anaesthetic if they have to. We will also get to see a Neurologist and have an EEG.

17 August 2009

We ended up taking Olivia to hospital last night as she woke up at 10.30pm screaming and writhing around. She was kicking her legs and arching her back and wasn't talking to us, just screaming and crying. Eventually she said her head hurt. I had asked her if her toes hurt or her tummy so as not to put words in her mouth.

By the time we got to the hospital the calpol we'd given her kicked in. A different Paediatrician checked her over but couldn't see anything obvious wrong apart from her stutter so let us go home. He did check the info he had to see if he could find any effects of a Tamiflu overdose but said there were none listed as enough trials hadn't taken place.

I phoned Olivia's Paediatrician a few times and left messages over the weekend but didn't hear back.

16 August 2009

Her stutter is awful today. She's been repeating words about 15 times and it happens with every sentence. I really think it's as bad as a stutter could ever get.

I phoned the hospital and spoke to a different Paediatrician at lunchtime as we'd been to Finkley and our childminder couldn't understand Olivia either. She was worried too.

They said to keep a close eye on her but they couldn't really do anything if we took her in as the EEG would be closed.

15 August 2009

As the day went by Olivia developed a stutter. It was really bad in the evening.

14 August 2009

I phoned the Paediatrician to tell him I'd realised she'd had the adult dose of Tamiflu. She'd been taking the 75mg not the 30mg she was prescribed. I was shaking like a jelly when I found this and tried to phone my Doctor to tell her but she wasn't there.

I phoned the Pharmacy but the Pharmacist wasn't there. I spoke to a Locum but he had little interest so I looked up the Pharmacy Regulatory Body to report the dispensing error.

When I spoke to the Paediatrician he said he didn't think it would be related to her behaviour.

August 2009

Olivia's condition seems to be worse. She's vague and distant most days, just sitting on your knee or in a chair doing nothing. Her eye's have no life in them and she has no sparkle. She's like a zombie.

6 August 2009

I took Olivia back to the Doctors as she's continued to have these absences about 4 times a day that we've seen. She also fell down the stairs this morning and we don't know if it's related to the absences as she did have one on the stairs yesterday.

The Doctor spoke to the Paediatrician after we'd been and phoned to say that he was going to make an appointment for us to go and see him and for her to go to Southampton hospital for an EEG. We've got to wait for the appointments.

27 July 2009

I took Olivia to the Doctor today as she's been doing more of the staring. The Doctor thought it could be absence seizures so spoke to a Paediatrician at the Hospital then and there. They've agreed that we should keep a diary of how long it lasts, when and what happens. We need to go back in a weeks time.

25 July 2009

Olivia had episodes where she sits and stares in to space. It's happened about 4 times today. Even if you wave your hand in front of her or touch her she doesn't respond. It lasts approx 30 secs and when she comes round she crys and wants cuddles and just sits on my knee for ages.

23 July 2009

She seems a bit better today. She woke up with a temp but wants to play today. She seems to get a higher temp when she's due for the next lot of Tamiflu. I'm not sure if that's coincidence or if it's making that much difference.

I gave her her Tamiflu and some Ibuprofen and she hasn't had another temperature today so that's great compared to the other days.

One thing we've found talking to other people is that the symptoms keep coming and going. Both Olivia and the little boy who goes to the same childminder that we think she caught it from have been fine at odd times and then their temperatures suddenly shoot up again. The amount of times his mum has said he's okay now and then "oh no he isn't".

With Olivia you can tell by looking at her eyes that she's still not A1 but she's been playing well and eating a bit more today so hopefully she'll be right tomorrow.

22 July 2009

She's on Tamiflu now. She managed to sleep through from about 10pm and her temp has been 38 all morning but a short while ago her skin went all prickly again and her temperatures going back up. Touch wood though she's nowhere near as ill as yesterday.I did get scared for a bit when I couldn't get her temperature down.

21 July 2009

Olivia came out with shivers and goosebumps yesterday evening and within 5 mins had a fever of 39.7. We gave her Ibuprofen and Calpol all night.

She was still ill this morning so I called for an emergency appointment as the Duty Nurse in the evening said she could have an ear infection. Over night I thought about that and she hasn't rubbed her ears or cried so I thought I'd get her ears checked.

The surgery didn't want her to go in in case of Swine Flu so got a Doctor to call me. By that time she was looking really ill and although I'd given her 5mls of Ibuprofen her temp was still 40.5.
The Doctor said if she developed one more symptom to call otherwise just treat the fever as I had been doing. Then this afternoon she developed diarrhea (sp?) so they've now said to collect some anti-virals.

I hope they make a difference as it's horrible seeing them like this. She won't even let me touch her now .

20 July 2009

Olivia's temperature went through the roof in a matter of 5 mins after having goosebumps. Waiting for duty Doc to call back to see what they think.

Backgound

Hi, I thought it about time I wrote a blog about our daughter Olivia. She's 2.5 years old and has been ill now for 16 weeks. On the evening of 20 July 2009 Olivia developed a sudden fever and as it was suspected to be Swine Flu she was prescribed Tamiflu.

Unfortunately the Pharmacy gave 75mg twice daily instead of the 30mg twice daily she had been prescribed and we believe her Neurological problems could be connected to the Tamiflu overdose as it was 2.5 times what it should have been twice a day for 5 days .

She has been suffering a variety of seizures, confusion, memory loss, severe stutter, dragging her left leg behind her, slurring, left side of mouth drooping, pain in her head and long periods of being in a zombie state.  She often asks where you are when you're stood right next to her.

Prior to the Tamiflu Olivia was very alert, had very good speech for her age in terms of range of words and pronunciation. Olivia never had a seizure before the Tamiflu, not even when she had high temperatures with the suspected Swine Flu.  She slept all through the night, every night.   She had a great sense of humour and was very cheeky.  We always described her as a minx who was always on the go.
 
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