On a bum note

On Sunday we all went to Space with our friends from Families United


It's a multi-sensory play centre in Preston with soft play, ball pool, heated water bed and a huuuuge slide.


Zack loved it and so did first time visitor Scarlett, take a look at them enjoying some bonding time on the big swing (Zack's favourite part of the visit).

On a bum note (pun intended), I got an unsupportive result back from the O.T with regards to my request for suitable seating for toilet training. Apparently management (whomever they are) don't think he is developmentally ready for it. 

Truth be told I knew I would get that answer. Helpfully it was suggested I just try him on an ordinary potty chair from Mothercare and if I am successful a suitable chair can be looked into. On the other hand use his Disability Living Allowance to buy the chair as this is what's it's for. Either way they are not going to offer any help with regards this matter. 

I have asked for the relevant members of staff higher up to write to, don't think I will get anywhere but I still want them to consider this matter not just for Zack but for other children like him.

Seizures remain the same. Definitely longer, they last about thirty seconds now so I am starting to think we need to re-look at medication again. 

Come Friday Zack is going back to boot camp. We'll see how we go, I'm glad really as we haven't seen the physio for ages and we need to get back on track with some therapy for him.

Busy times for the Pants and a birthday coming along very soon, can't believe he will be three in a couple of weeks. 

Run with your gout

Where have the weeks gone? They've disappeared into a black hole known as my life.


We've had a very stressful few weeks. It hasn't helped that Scarlett got the cold beyond all colds. Well, what do we expect when you take her to a soft play area within which she finds the dirtiest looking ball to eat. Oh and follow this by letting some little girl kiss her on the lips a few times. 


This then led to Zack getting sick, vomiting and having a general snotty cold. Which he is still getting over. This then leads on to more seizures and us holding off on increasing his medication just in case him being ill is the cause of the influx in tonic spasms.


And then, I get sick which is even worse because dealing with two crying children whilst your head is banging, your throat is sore and your nose is snotty is bad, bad news.


Okay. Everyone breathe out because things are now a little calmer.


Scarlett's cold is gone. Zack is on the mend and off the Clonazepam. He is actually off it a bit quicker than I would have liked simply because the chemist gave us a different strength of his medicine for his repeat prescription. This small matter, I only picked up on when I looked at the label. We've been giving him half his dose for a few days so now we just dropped it off completely. 


His seizures are becoming longer in length but not as many. Still too many to be having so I think we may have to increase the medicine. I have a gut feeling though that this one doesn't work for him. Another one we can chalk up on the board. 

It's nice to see him getting back to himself though and showing his rather wicked sense of humour. His poor daddy you see, he has gout. Quite painful I believe. One evening, Scarlett was going to practice her usual act of pulling herself to standing by grabbing on to the T.V stand. Not good when you have a flat screen tv wobbling and threatening to smash on top of her head at a moments notice. 

I shouted for Dan as I had Zack sat on my knee. 

"Come on, quick, run with your gout, run with your gout." To which Dan hobbled as fast as he could and at the same time Zack went into a fit of hysterical laughter. Proper hahahahaha laughter. Obviously seeing his father in pain is extremely funny especially when his mummy tells his daddy to speed up using his gamy foot. What a strange child. It was funny though.

We had the pee and poo nurses round today

Zack's back at nursery. So far he's played outside. Had a massage. Decorated a biscuit. And played in the sensory room. 


I was worried about sending him back after all the problems with his seizures but the staff were happy to care for him and he's in safe hands. I think he is getting more used to it now. Reports back from his main looker afterer is that he's doing lots of smiles and laughs and even shouts when he doesn't want to go in his seat. That is one little boy is getting his own way.


We had the pee and poo nurses round today. Okay. The incontinence nurses. They're the ones who hand out the free nappies. Apparently you only get four, that's all you're allowed. I said I didn't want any yet as Zack can still fit into the big size nappies. I didn't feel comfortable taking them whilst we can still get hold of the nappies to fit him. 


We discussed toilet training. They started off by saying, until a child is developmentally ready or mobile it's hard to potty train them. I said, well some children can't walk, talk or sit independently but they understand what's going on so surely they can be potty trained. They did agree and said that they think it's every child's right to try to be potty trained. Well okay then.


Moving the conversation along I discovered there are potty chairs (a bit like the chairs used in conductive education) that they have given to families to try to get their child to learn to use the toilet. I told them that the O.T couldn't provide a chair for Zack as there wasn't one small enough. I think the O.T is thinking Zack needs a chair that is more supportive whereas I know with help he can sit on one of these special potty chairs. 


This is the one I think they mean.


Potty Chair


Long and short of the conversation was that the P and P nurse is going to speak to the O.T about getting Zack one. She also said you never know learning to go the toilet might be his forte in life. Hmmmmm, I think Zack might be destined for greater things than learning to pee and poo on a potty.

New Plan

Happy New Year. Bit late I know but we've been very busy.




Despite Zack's sedate nature we had a lovely Christmas. Even managed to have a Christmas lunch, just Dan and I whilst both children slept. That never happens.


Zack had started responding well to the medicine but the side effects were awful, floppiness, sedation etc. This all lasted for about eight days then whack the seizures crept up to the 80s and 100s again. We nearly took him in to the hospital but to be honest I thought there was no point. It was a Bank Holiday and probably skeleton staff on, all they would do is give him rescue medicine. 


I waited until the next day and spoke to the epilepsy nurse who in turn got hold of his neurologist, who in turn came up with a new plan.


The thinking was that the Clonazepam had done it's job for a bit but then his body got used to it very quickly. His new drug, Keppra wasn't up to the required limits so that needed to be upped a bit quicker. 


Thus far we've kept the Clonazepam the same and upped his Keppra. We were meant to up it again on Saturday but we hung back because his seizures have slowed down. Today he's only had about 15 which is brilliant compared to what he was having. I am going to ask about doing a slower increase again just to see if we can knock off a few more.  I am hoping that it stays this way for a while but you never know with epilepsy it can all go to a bit rubbish at the drop of a hat. 


On a good note Zack continues to sleep well and is in a lovely mood. Here's some pictures of our Christmas time. Enjoy.

Oh Happy Days

They're all mine

Loving the bike

Mmmmmpfffff......that's what the horse is called.

Loving the truck

Christmas.....it's hard work

He actually made him self sick with laughter

Well, it's beginning to look a lot like Christmas.....and somebody has some extra special presents coming his way and (her way).


Seizures are a bit better around 20 -25 a day rather than 80 odd. Still quite fuggy. Nurse suggested we drop one of the Clonazepam doses see if he doesn't need it. We did that. He needs it. 


Noticed he isn't as groggy as before but still quite floppy. However he is finding everything hilarious still. 


For example. Something was so funny this afternoon that he actually made him self sick with laughter. Yep, vomit all over me and all over him. Mind you Christmas cannot officially begin until you've been vomited on by a child. 


Glad he's in a good mood and can't wait for us all to have our Christmas dinner together. Scarlett's first one and Zack's third, he's beginning to be an old hand at it now. Will post Christmas photos after I have recovered from Turkey dinner, chocolates, trifle, mine pies, drink, chocolates, cheese and crackers. 


Happy Christmas everybody have a lovely time.
XXXX

It all goes pear shaped

Seizures have remained excessive. To the point where I just couldn't count them any more as it was depressing, let alone a pain in the arse for Zack.


Fortunately Zack's increase in seizure activity coincided with an appointment to see the neurologist. The outcome was that the Lamotragine no longer works for Zack. They don't know why this happens, it sometimes just stops. With some people they can have a long while of everything being great, pretty much like ourselves, then bang, it all goes pear shaped. 


We have a new plan. Zack is being started on a new drug called Keppra. In the meantime he is also on Clobazam to effectively try and stop the seizures quickly. I think the plan is to keep him on the Clobazam until we get the Keppra up to the required dose. We will also begin to slowly wean him off the Lamotragine.


What we now have is one stoned little boy. The doctors told me that it would sedate him and according to the side effects this lasts for about a week. It's starting to have an affect on his seizures but he isn't as awake as he usually is, kind of in a foggy haze I think. 


Don't get me wrong, the world to Zack is still happy and funny. It's just he's a bit floppy and sleepy looking. When we give him the two at night, he goes out quite quickly and remains asleep through the whole night.....still, every cloud and all that!!!!


I hate seeing him like this, Dan doesn't think he's too bad but he's not like he was before really aware and switched on. Dan keeps reminding me that it's only for a short while to get things  under control and if it carries on we just go back and see what else we can do. He's also read that you can split the dose up, meaning we could give more at night than in the day time. As usual he remains positive and I remain protective. Pleased it's working with the seizures though because I think he was having around 100 a day.


The doctor also asked if we would like to try the Ketogenic Diet as part of Zack's treatment for epilepsy. I'll go into this in more detail when we begin. But we are up for trying anything and I am happy he suggested it as I really would like to give something a go that isn't medication.


Glad things are now a little more steady if not a little more sedate. Actually I think I'd rather like to be in Zack's frame of mind, a hazy Christmas sounds about right.

Downward cycle

Bah. Humbug. 


Not you Christmas. You, you pesky seizures. 


Zack's seizures have gone into over-drive so much so that on Friday we were on the phone to the hospital to see if we should bring him in. He should have open access to the children's ward so that we don't have to hang around A and E explaining all the ins and outs of Zack.


Oh hang on a minute we aren't in the books any more. Nope according to the nurse because he hasn't been in for a good while his name's not down and he ain't coming in. Her advice, you'll have to go to A and E.


Great. At this point I leave a message for the epilepsy nurse who kindly gets back to me and we get an appointment to see the consultant that day (you can't knock em for sorting us out). By the time we get to the appointment Zack has had well over 70 tonic spasms. He goes very straight and stiff, arms out stretched head back and pursed lips. They last at the most 10 seconds. They don't bother him and cause (according to the doctor) no lasting damage. It's just  if he continues to do these constantly then it's going to affect his development. 


The outcome of the meeting with the consultant is to up his meds, wait and see how this goes, wait and see if he has any underlying infection brewing and see the neurologist on Thursday.


Well, it's now Monday and I've lost count of how many seizures Zack's had. We've given him a small dose of chloral hydrate to break the cycle and get him off to sleep in the hope that tomorrow will be a better day. 


Every so often we get stuck in this downward cycle. It's a bit like his medicine has been holding the door  tight shut and his seizures have been banging on it trying to get back in. Now they've finally broken down the barrier. 


I am confident we can try something else that may help for a while. Whilst I am worried I am not overly anxious, I think we can win again. Besides we've had harder battles than this. 


As a footnote Zack is still very smiley and still finds me hilarious. When I do something it's a laugh like this ahahaaaaaaa haaaaaaaaaaaaaaaa haaaaaaaaaaaaaa huuuuuuuuuuh. 
When his dad tried to entertain him in the same way I swear he just made this sound.....Huh. 


Enough said, I am obviously the funny one.

Oh dear

Whilst I should be doing lots of other important things I got to blow drying Zack's hair.




Separated at birth.

The Pants

Harry One Direction

Zack was so ahead of the game with the hairstyle!!!!

Zack has remained happy

Tis the start of the party season and Zack has already enjoyed the festive spirit with the F.UN Christmas party. His sister was allowed to tag along, she wasn't impressed with the whole party scene at first until after supping her milk. Then there was no stopping her. She also tried to unwrap Zack's Crimbo present from Father Christmas. My goodness little girl, there's a limit to how much the Pants will take.


Here's a pic of Zack with his daddy and his huuuuuge present.

Alongside the festive goings on we have noticed an increase in Zack's seizures. Started at the weekend with lots more of his extended body seizures. They have been steadily increasing but not bothering him so a few calls in to the local epilepsy nurse and an appointment next week should see us with a new plan. I am thinking he has got a bit bigger and heavier and therefore needs to increase his Lamotragine. 

On a good note Zack has remained happy. In fact he is changing a fair bit, he is starting to find lots of things funny. Such as saying hello to him, tapping a plate with a fork, brushing the side of his face, all hilarious. Long may it continue.

Oh and before I go I would like to give a little hello to a lovely lady who reads this blog who has announced some exciting news. 

Congratulations Ms Harvey the Pants approves. XX

Goodbye to our last friend

Bloody hell I feel like for the past twelve months this blog has turned into an obituary for cats. 


We have said goodbye to our final four-legged feline. Our very first and our last (for now). 


Willis. Or Wilbur, or Willamena, or Willsy but always the cat that was a cat. He didn't think he was a person (Ozzy), he wasn't semi-wild and live in a bush (Colin), he didn't get himself locked in a neighbour's house for three days (Austin). No. He was a normal, friendly, affectionate cat. 


Of all our cats it was Willis that Zack preferred. And Willis loved Zack. He used to jump up and say hello to him in the morning and Zack used to smile in response. He even tolerated being yanked by the fur from Scarlett who didn't understand the gentle technique of stroking a cat. He never hissed at you, he never bit you (Ozzy), he never scratched. He was the best of all of them. A nice cat. And a very missed cat.


Goodnight Willis.

Willis the black cat. Well, you would never get him wearing a bib saying I'm a hungry teddy.

Tired.

Too tired to blog. Had a busy day at Kidz up North. Tried Zack on a trike think he liked it. Got his new pushchair fixed up. All good.

Have some photos instead. Taken during computer time.

I have no idea what was so funny.

Note Zack's face....rightly confused at the Scazlah.

Love this, captures my Zack perfectly.