Tuesday 24 July 2007

All is calm....

Hiya,

Just a quick up-date as nothing much to report. Patrick is doing really well at the moment. He seems to be responding well to his meds and is only having one infantile spasm a day that is very mild so that is good. He is still having loads of focal seizures though but these are easy to cope with (for us at least) as they only effect his face, he turns his read and rolls his eyes and his mouth goes funny as if he's chewing his tongue but this only last about 30 seconds then he's fine again and it doesn't distress him at all. This may get a bit worse as he gets bigger and starts getting teeth but we'll deal with that as and when we need to.

We were back at Southampton yesterday to see the Neuro's and they've decided to start weaning him off of the Sodium Valproate (Epillim). That is the only drug he's been on from the start so considering that he was still fitting really badly while on high doses of that it should be safe to assume it's not really doing much so hopefully wont make much difference once he starts coming off it. It should hopefully mean that he might me a bit less sleepy which would be great. He is very sedated at the moment and this will effect his chances of developing properly so it's important that we try and sort that out.

As for his development at the moment, he seems to be doing very well. He is really smiley and happy all the time when he is awake which is great. He has an appointment at Bournemouth hospital next Friday to have his eyes tested so fingers crossed for that. I'm not sure on his vision at the moment, sometimes I'm sure he's got good sight as he seems to fix and follow well but when you watch him laying with his play gym he never seems to be looking at his toys just hitting out randomly in the hope that he'll hit one, it's difficult to say really so I'll be glad to finally know for sure next week.

Anyway, that's about it, keep fingers crossed for our baby boy as he comes off the drug, hopefully he'll be fine but there is a chance he'll regress a bit. We'll keep you up-dated over the next few weeks so you know how he's doing.

Take Care, Love Gemma xx

Sunday 15 July 2007

Home again, home again, jiggety jig...

Hiya, For those that don't already know we are home again. Patrick was discharged on Friday. It was felt that as the reason he had been admitted was so they could speed up the increase in meds and this had been achieved with some success, there was no clinical reason for him to be taking up a bed. Although Patrick is still fitting I agreed to him being discharged on the basis that he be treated urgently as an outpatient, we have an appointment on Monday morning.

Before his discharge Patrick was given an EEG which had some surprising results. The EEG results showed that the background activity that had always caused concern is now much less which made it easier to see what else is going on. There is now the chance that Patrick's seizures are 'focal seizures'. This basically means that they may be being generated from one area of his brain, in his case somewhere in the bottom right (I'm sure there's a technical term, I will find out). Although there is still a question mark over this, it is somewhat encouraging as if the seizures can be isolated there is some chance that even if he doesn't respond well to medication, they may be able to remove the part of the brain that is causing the problem. Now all this is very far off and Patrick will be having more scans and repeated MRI's as he gets bigger. The Neuro team haven't given up on the Infantile Spasm theory, Patrick's seizures have all the physical characteristics of Infantile spasms just no evidence to back it up. He is proving to be a very complicated patient and has some of the top Neuro's in the country completely baffled. In a way this is good news as I know that people like Professor Kennedy don't like to be beaten and the team will be doing everything they can think of to find the right treatment for Patrick.

At this moment in time Patrick is on 3 different anti-convulsants, Sodium-Valporate (a common anti-epileptic), Vigabatrin (usually for Infantile Spasms) and Topiromate (apparently good for focal seizures). He is also taking Biotin, a vitamin supplement that works along side the Vigabatrin. All of these medications have some sedative affect so Patrick is much more sleepy than he should be. At the moment he is still having the odd seizure, yesterday he only had one which was excellent but we have been here before where he has a brilliant day and we finally think the meds are working but then the next day he has 6-7 so it is early days. We are having to monitor and record every seizure, writing a description of his movements and how long it lasts. He has started a funny quirk of chewing his tongue and screwing his face up which we are told may be a focal seizure so we are monitoring that as well. We are also having to record his feeding patterns as he is so sleepy that he doesn't always manage to stay awake long enough to feed properly so we are taking advice from a dietitian for that.

So, a lot to take in I know, I'm still trying to get my head round all the details myself, hopefully we'll get some more info on Monday. It is great to be home though
and despite all he is going through, Patrick is absolutely gorgeous. Development wise he is still very floppy, he can't hold his head up but he doesn't let that bother him, yesterday he really started smiling a lot and he even giggled! He is very touch sensitive and loves having raspberries blown on his neck. He is a very happy baby and both Martin and I are proud as punch, he is definitely hard work as you can't take your eyes off him but we are used to that now. If he is sleeping and I am doing housework, but more importantly at night time if I'm asleep, he has a small wrist rattle that his Grandma bought him, I put that on his wrist so that if he does start fitting it alerts me immediately, a simple idea that works, until we can buy some more sophisticated equipment.

Anyway, I will update this after Monday when we know a bit more.

Take Care, Gemma xxx

Thursday 12 July 2007

a bit more news

but not a lot! The vigabatrin definately seems to have had an effect but Paddy is still having fits. Over the past couple of days, the fits have come down in number, quite dramatically in fact and those that he is havong are nowhere near as distressing for him either.

So far today (since 5.10 am) he has had only two fits which were very mild. Good news it seems but we had a similar run after he was put on the Topiromate initially so I am just waiting until I open my mouth too wide or too quickly so watch this space.

Love from the Conyards
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Tuesday 10 July 2007

Getting cuddles from my baby

The Prisoner

I think Patrick's first words will be 'I am not a number'. Poor little bloke is still in Southampton and still having seizures although they have been greatly reduced now. Reduced not only in number but (thank Goodness) in severity too.

As I have mentioned in an earlier post, he has now been put back on Vigabatrin and last night (Monday) this was increased to the maximum dose allowed for a baby of his weight. The result is that so far, since that increase, he has had only a handful of fits and Gemma says they are very mild. So that is a bit of good news and welcomed by us all.

Obviously I try to temper my enthusiasm with caution because as his Dad I want each new thing to work and can get carried away in my reporting of it and I don't want to mislead anyone. Albeit unintentionally.

To that end, Gemma asked Prof Kennedy what is next and he confirmed that this new dose also has to be given a proving period before we can decide to withdraw it should it fail to work. Gemma then asked if there was a plan B to which he smiled and said 'oh yes - don't worry'. So again, he manages to reassure us even when giving us.... not exactly negative views because he is just being honest of course - but I think that from a different person we could walk away from chatting to him feeling 'down' but somehow he manages to tell us very little, not always positive but you just know that you can trust him and that he knows what he is doing. If that makes sense! I think that if he wore a hat, I would be looking for the rabbit!

I was just about to add that this new dose has knocked Patrick out again and left him sleeping most of the time but having just spoken to Gemma (it is 23.18), she informs me that Patrick is now wide awake, full of the joys of spring - I know it is summer but blame the greenhouse effect - and is currently singing and wanting to play. Again, this is something to be grateful for but I am not the one who is up there with him, absolutely knackered and wanting to sleep. Tee hee!

We shall see what the next few days bring and hope that I can continue to report good news. From what Prof Kennedy said to Gemma today - it looks like they will be at the hospital longer term rather than just a quick visit. We had a chat about this and agree that we will keep doing what we are doing, how we are doing it. It isn't nice to be apart (those who know us well, know that we are a very close couple and genuinely enjoy each other's company and do miss each other quickly) but we have to do what has to be done for Patrick and there is no way he will be left on his own up there. When he was in the coma it was a different story of course because he was unaware of anything really but this time he is fully functioning between seizures and we just couldn't contemplate it.

Isaac and I get up to the Hospital daily and we manage to eat dinner together with Gemma (and Patrick in attendance) every day too so we have some sort of continuity for Isaac as well as for us. The big boys are obviously of an age that makes it easier to explain and they understand what needs to be done. They have actually been terrific throughout this whole period and have been supportive and supported. I am actually very proud of my little family and they are all my heroes - Paddy in particular, of course.

Well enough of me gushing about my wife and kids - that is not the point of this blog.

Thanks as ever for the support of you all and the understanding of those who have been leaving messages but not always getting replies. You know it isn't through ignorance but sometimes we just don't have the energy to talk about it when it has been a bad day. I guess that IS the point of this blog!

Much love to everyone
from all of us
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Sunday 8 July 2007

just a quickie

Hi all

no real news as such this morning (Sunday) but the fits continue. We hope to maybe see a neurologist today if one is about.

I was just speaking to my sister Angela and she mentioned the fact that she was unaware that we could make and receive telephone calls from the hospital. The ward that we are in is fine with us using our mobile phones so please feel free to give us a call. What I would suggest is that perhaps you would text first, just to make sure that Paddy isn't hitting the bottle or napping/fitting/settling down for a nap etc. That way, Gemma can let you know if it is ok to call.

**Update: We got a mobile for Gemma so I have removed the request. We have borrowed one off Gemma's Mum till our upgrade comes next month but thanks to everyone**

hope to have more news soon.
Lots of love
From us lot
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Saturday 7 July 2007

Spoke too flippin' soon of course

Just after I finished the post for last night, I spoke to Gemma and she told me that Paddy had just had a fit! Not too bad it seems but I must have spoken to soon.

He had another at 03.00 this morning and then another couple by the time Isaac and I arrived just before ten am. While Gemma was out with Isaac, Patrick had a little sleep and was then awoken by some strange facial movements and then body jerks with some vocal activity too. I am not sure if it was a seizure but it certainly wasn't normal behaviour and the nurse on duty agreed.

He was a good boy and took two bottles while I was there and as I settled him down for a sleep, he had a seizure more like the ones prior to the vigabatrin and he was screaming with each spasm! Not a good sign but it is still early days with the Vig Drug so let's keep our fingers AND toes crossed.

News as it happens.............
Martin, Gemma et al
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Friday 6 July 2007

Let's go round again.........

I am having a touch of deja-vu again (that is a subtle joke by the way) but it seems we have been here before.

Patrick was given the vigabatrin again last night and he actually settled down to sleep without any fuss. That in itself was a noticeable change and he slept all night. Prior to the vigabatrin, he had another massive seizure and vomited his feed which he had just finished. Gem was quite upset/scared/shocked by this one but thankfully that was the last of those. (so far).

This morning broke with just one mild seizure and so far ( as of 9 pm, he has had no more). The down side is that he has been quite sleepy and when awake, he has been very agitated, vocally protesting and unwilling to interact with anyone. This is a blow because as much as we want him seizure free - and we want that most of all - we also want our baby to be aware of us and want him to join in with us. He has been doing this in between fits and we had hoped this would continue but obviously his comfort is paramount. Let's hope that as his body becomes accustomed to the drugs, so his awareness and interaction improves too.

I misinformed you via my sister yesterday and said that the topiromate was being withdrawn but this doesn't seem to be the case and in all honesty is probably a big part of why he is so out of it again. The Neuro has said he wants the fits under control as quickly as possible at which point he will start to withdraw any drugs he then feels are unnecessary. He has also said that he wants to check out another possible metabolic issue involving enzymes and Patrick will start treatment tomorrow for this. (Saturday). I can't remember what the vitamin/drug is called but will update this blog later when we know more about it. Again, this is an outside chance but we all have hopes for any little miracle so here goes nothing as they say.

It looks like Gemma and Paddy will be incarcerated for another three days or so although Gemma has got a day pass for tomorrow and is taking Isaac out to see the Brum roadshow in Christchurch. He doesn't know anything about this so it will be great to see his face when she tells him! I will be doing the day shift with my little boy while they are away and I can't wait to have him all to myself. (By the way, Brum is a kids' TV show about a little vintage car that goes on adventures! I wonder if he will get a parking ticket in Christchurch?)

Depending how well I cope tomorrow, I should be able to update this blog when I get home again. If not, it will be as soon as is possible.

Just for the Medics amongst the family - (name dropping now) - The Consultant Paediatric Neurologist looking after Patrick is Professor Colin Kennedy who apparently knows his stuff judging by the amount of Google hits he has. He is something of an authority on Infantile Spasms and early onset epilepsy (I just looked that up as you can probably tell.) Anyway, so far we have been very lucky with all of the Neurologists that have been involved with his treatment and indeed all of the medical staff. It is also nice that none of them have tried to blow us up in the car park too.

On that note, I shall leave you all in peace and say goodnight and again thanks to everyone on Patrick's team and in the fan club too.

We will never get bored of saying thanks for all the love, support and kindness that have been shown to us throughout. You will all get a mention in Gemma's book, no doubt :-)

Thursday 5 July 2007

Latest news 5th July 2007

Knowing how we all worry when we don't get any news, Martin and Gemma have asked me to post this update for them and to pass on their apologies for not updating sooner but as you can appreciate they have been pretty busy and to be honest there hasn't been much to tell as there has been little change in Patricks condition.

Patrick is still having seizures and though they are less frequent they are lasting longer. He is having about 9 clusters a day on average and they still appear to be quite painful. The doc's have now decided to withdraw the new adult drug (Topiromate) that they put him on and reintroduce the anticonvulsant (Vigabatrin) although this can only be used in the short term (max 2 years) due to the possible side effects.

Martin, Gemma and the boys want to thank everyone again for all the love and support and will keep you posted on Patricks progress.