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