Rolling over!

Just a bit of video footage we took of Patrick rolling over, he's a very clever little man. xx

No news yet.

Unfortunately there's going to be a bit of a delay in us getting Patrick's MRI results. When we turned up for our appointment at Southampton today we found out Patrick's neurologist had been trying to contact us all day to let us know she hadn't been able to view the scan results yet. She is now off for a break so we've arranged to go back in May when she's back and has had a chance to look at them.
Fiona was able to give us some good news though, Patrick's EEG results showed an improvement. Every previous EEG has shown seizure activity and constant 'background activity' that they haven't been able to explain, but from what we understand any kind of background activity would have an effect on Patrick's development and ability to focus. What they can see now is that Patrick's EEG is nearly 'normal' but he still has bursts of background activity. We can only assume that this improvement is due to his medication and the fact that his seizures are now fairly under control. Having said that, Patrick's seizures have been getting stronger over the past week, I don't think that it's because we are reducing his vigabatrin as I believe they were starting to get a little stronger before then. I actually think there's been an improvement since reducing the vigabatrin, Patrick has been really interacting and has been more vocal over the past few days, he's a happy little boy at the best of times but he's been even more so the last couple of days, even Fiona managed to get a giggle out of him today, she said it was the best she's seen him. We've decided to up his Carbamazepine a little bit to see if that calms his seizures again so fingers crossed.

Anyway, it's been a long day so I'll keep it short and of course I'll let you all know when we have the MRI results. For now we can relax for another couple of weeks before the nerves start to kick in again.

Meet the Patersons

Well, we finally got to meet the Paterson family who travelled down from Staffordshire to see us over the weekend. I'd met Karen via a website called 'contact a family' that puts you in touch with families in similar circumstances and we instantly hit it off and have been phoning each other regularly for the past few months, it's really nice to be able to have a moan and a laugh with someone who totally understands your frustrations. Anyway, Karen is married to Gordon and they have Ellie who's 4 and little Luke who is 15 months. Luke is very similar to Patrick as he too has severe Epilepsy/Infantile Spasms and developmental delay. And like Patrick he's totally adorable and very snuggable!

It was a really nice weekend, we took the kids to the beach on Saturday and to the holiday park disco in the evening and then went to Christchurch quay for lunch on Sunday, so lots of fresh air and family fun, just what we all needed.

Patrick goes global!

It's official, Patrick is now famous in the USA! Well, maybe I slightly exaggerate but a very great lady called Beth who's son Ben is Epileptic took part in a charity walk for Epilepsy and as you can see from the photo's Patrick got a mention on her t-shirt, (on the right side of shirt) how amazing is that?! Beth raised $2500 dollars for Epilepsy research which is a fantastic achievement. Martin met Beth online through one the Infatile Spasm news groups he's a member of, these groups are a great way for us to find out about other people's experiences, medication and new equipment eg. The Waterway Swimming sytem mentioned in a previous post. The pictures below show Beth's t-shirt which she used, in her own words, to 'Honour' all of our children. There are many kids from the USA mentioned on the shirt as well as a number from outside the US too. One of the pictures shows Beth's gorgeous son Ben and another little Infantile Spasms Champ - Rohan! Well done to everyone who took part in the walk - you are all Champions in our eyes! This is a good reminder that we are not alone in our journey alongside Patrick and there are other kids dealing with similar challenges to his. Well done Beth and thanks from all of us here, especially Patrick xxxxxx

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Latest News

Hiya, had an appointment at Southampton Hospital today with Dr Fiona Goodwin, Patrick's Neurologist. It was just a check up so there's not lots to report. Patrick was pretty sleepy when we got there so although Fiona was able to see him awake, he wasn't too responsive and he seemed to drift off into an absence seizure at one point, this is something we've seen before but usually only when Patrick has just woken or is really tired. Patrick had his weight taken, he's currently 11.6kg (25lb) so he's quite a heavy lad. He also had his head circumference taken and this came out at 45.3cm which is well below average. Apparently his head has grown from last time but it is significantly smaller than what it should be which is usual in a child with such major development problems and it indicates that his brain isn't developing normally, which we already know really.
We're going to withdraw the Vigabatrin but we'll do it very gradually, the last time we withdrew it it seemed to have an adverse effect on his seizures but he's so stable at the moment and we know that the clobozam and carbemazepine are working so now is probably the best time to get him off it.
We also discussed Patrick going on the Ketogenic diet, this is a fat based diet that is a great commitment but it is proven in a lot of cases to reduce seizures in children like Patrick. In lots of cases if the diet is working well it is even possible to withdraw all other medication. It looks like the Ketogenic diet will be the next course of action if/when his current meds stop working.
There's been another change to all our appointments now, we're taking Patrick back to Southampton on Monday for his EEG, then Tuesday for his MRI and we'll be going back on Thursday for the results.
Dr Goodwin is still waiting for some genetic tests to be processed but as before the few results she has had back have come back normal. She is now going to refer us to the Geneticists who may be able to get the tests done quicker and they may have other suggestions.
Also, it may be possible to get Patrick the chicken pox vaccine on the NHS, Fiona will speak to our GP and try and arrange it.

That's about it really, of course I'll be updating next week when we have the results of his MRI.

Take care, lots of love, Gemma xxx

Race for Life

Hiya,

Just a quick one to say that this year myself, my Mum and my Aunt are entering the Race for Life in Portsmouth on 1st June in memory of my Grandma (their Mother) who sadly passed away 2 years ago after a long battle with Cancer. If you would like to support us please visit my sponsorship page here.

Thank You xxx

Busy Busy

Had a great 2 weeks as Isaac was on his school holidays so we were able to have lots of quality family time. We've been swimming lots with Isaac, Patrick has been once and he seemed to enjoy it but was a bit too tired to appreciate it properly.

On Saturday we went over to Montecute School in Poole to take part in a 'fact finding' event laid on by coping with chaos. The government have given the whole of Dorset around £4 million to spend over the next three years on short breaks for families with disabled children, this could be anything from a 2hr restpite at a leisure centre to a week long family break. There was loads for the kids to do and Isaac had a great time, there were clowns and jugglers, a disco and bouncy castles and while Isaac played, we had to join in a group discussion and say what we would like the money to be spent on. It was well worth attending and it will be interesting to see what the outcomes are.

On Sunday it snowed! We rushed out to play in the snow as it so rarely snows down here and on the very odd occasion that it does, the snow melts before you know it. As we were caught unawares, we only had some peeled baby carrots for a nose and two brussells sprouts for the eyes on the snowman that we built!

We were over at Julia's house for their toddler session yesterday, we were able to take Isaac as well as he had an inset day. As soon as we walked in Isaac was kept busy and more or less given the run of the place, he was dressed up as a Pirate and hunting for treasure in the sensory garden, it was just great to watch him having so much fun. Patrick actually stayed awake for the whole morning which was a first so he was able to play with the toys and enjoy his surroundings, he's always made a fuss of when we go there so he's really relaxed there. These toddler sessions are also a great way of meeting other parents in our situation, you can share experiences and pick up tips which is always use full.

We have several appointments coming up over the next few weeks, we're seeing Fiona, Patrick's Neuro on Thursday and then his MRI scan is next Tuesday 15th (it's been brought forward). He then has an EEG scan on 25th. He's doing really well at the moment, his fits are still very mild and he's only having up to 6 a day. He's made real progress rolling over now which is great, more often than not now he will roll right over from his back onto his tummy which is brilliant. He's still struggling to pull his arms out from under him so he gets a bit stressed out but the more he does it and the longer we leave him to struggle each time, I'm sure he'll keep getting stronger, it sounds a bit harsh to watch him struggle but if we jumped in and sorted him out every time he's never going to learn to do it himself. His grip seems to be getting a bit stronger as well now and he's showing a bit more interest in holding things, if we can get him holding things that will make a massive difference to his development I'm sure.

We're not getting Patrick's new buggy for another couple of weeks now, after chasing it up I've been told that as we're having it modified a bit they need extra parts which is holding it all up. We should have it by the end of the month anyway.

We're really looking forward to this coming weekend as we're having some very special visitors. Over the last few months I've built up a friendship with Karen who has a son called Luke who is just like Patrick only a couple of months older. We met via a networking website and she and her family are coming down to meet us this weekend. It will be really great to meet face to face and share experiences. It will be nice for Patrick to have a play mate and Luke has an older sister the same age as Isaac too. I'm sure there will be lots of photo's going on here soon.

Anyway, the supermarket beckons so I must get on, I'll update after Patrick's consultation on Thursday. xx

Water Babies

Hi all,
just a quickie to say that we have been enjoying the swimming at the local holiday camp that we joined. Isaac has really taken to the pool, especially since taking swimming lessons locally and now loves larking about in the water.

Patrick enjoys the water but being held all the time does restrict his movement and I assume, his pleasure. With that in mind, we have recently come across this website here which sells a swim system for babies with developmental delays or other disabilities. There is also a video on youtube here which shows you just how beneficial it can be.

From our point of view, we would be looking to use the ring part at the swimming pool but we can also use the pool (that is included) at home and even in the garden during the warmer weather. It looks like a great way for Patrick to excersise and build up strength in his limbs. One of the reasons that he is such a big fella is that he is unable to move enough to burn off the calories so this will no doubt help.

We are just waiting for a reply from the Company to clarify whether there are any weight limits or whether the rings are sized according to baby weight etc. If all goes well, we will get one and there will no doubt be some video on here very soon of Patrick using it.

We hope everybody is well.

Love from all of us here
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