The good news is we had the results back from Zack's latest EEG. His new stiff jerk movements are not seizures. Phew. We didn't think they were and thank goodness the hindsight was there to see what we were treating rather than dose him up with a cocktail of anti-epileptic drugs.
His brainwave patterns show background abnormality (well, yes, he has considerable brain damage) but the episodes he is currently having show no electrical spike abnormality that would suggest seizures, it is more likely a muscle abnormality given his condition.
The bad news. We remain in poo/vom city. Slightly better today, he's only been sick a little, kept all his water and meds down and no code browns. Thank the Lord.
Agreed plan is to allow this virus to pass and see if his new Zackisms settle down, if not, then possibly an increase in the Baclofen. The Zackisms haven't settled and were quite bad today. We are thinking of requesting an appointment with a neurologist to discuss this new development, I would like to understand a little bit more of what they think it is. I am also hoping that it goes away and stays away for a good while.
Oh Zack's big boy bed arrived. And it is fantastic. He is so tiny in his single bed, so little covered up with his big boy Marvel Avengers duvet. And sleeps so well in it. Yes, sleeps. In bed. So much so, he actually had an afternoon nap in his bed, unheard of in this household.
He woke up in the early hours last night. I went down to comfort him, but really I just wanted to have a go of his tilting bed. It was very comfortable. Dan changed shifts with me about 4am and I heard Zack laughing and then Dan state, "well, move over then."
Talking of laughing, I've missed by boy. He's been very miserable but today we had more smiles and a few chatty noises. He's starting to come back. If he can come back and the twitches disappear, life will be good.
Friday, 23 May 2014
Sunday, 18 May 2014
Elevated his illness
I wish I could type a more light hearted post, what with the weather being so fabulous and all. At the moment although it's a glorious day I feel as though we are still stuck in perpetual doom and gloom. In fact, I will go so far to say that the beginning of my 40's has not been a great start, maybe this decade of my life shall be known as depressed at 40.
Zack has elevated his illness to sickness and poo. We still have mucasgate which to be fair is causing the vomiting and we still have minimal sleep. This is week number three. I know what the problem is as we all now have colds and coughs. It's small child and her pre-school pals, they are just germ rats. Whereas we can usually shake a cold within a few days Zack's goes on and on and on. Only good news is that it isn't on his chest.
At the moment this blog should have a warning. Don't read if you're in a good mood and abandon all hope ye who enters here.
Zack has elevated his illness to sickness and poo. We still have mucasgate which to be fair is causing the vomiting and we still have minimal sleep. This is week number three. I know what the problem is as we all now have colds and coughs. It's small child and her pre-school pals, they are just germ rats. Whereas we can usually shake a cold within a few days Zack's goes on and on and on. Only good news is that it isn't on his chest.
At the moment this blog should have a warning. Don't read if you're in a good mood and abandon all hope ye who enters here.
Tuesday, 13 May 2014
Mucas, sick and poo
I don't know what's powering me at the moment. Zack continues to wake up every night from about 1am. Either full of snot, or having a bout of his seizures. Either way it's all getting very boring and tiresome, so very, very tiresome.
Last night he was furious, he woke up coughing and snotting and then seizuring, I think in the end he went to sleep, I know I did, I hope he did. He is currently fast asleep on my bed, he has been for over an hour and half. At least he is getting some rest, I know I'll pay for it later when he refuses to go to bed.
Today was a better day than yesterday. His bouts of "seizures" were less and the length of period in between longer.
Apparently this morning there was an incident involving snot, mucas, sick and poo. I didn't have to deal with that, thank God. All I hear Dan saying was I didn't know someone so small could produce that amount of snot, it's amazing what the body is capable of distributing into your personal space.
Last night he was furious, he woke up coughing and snotting and then seizuring, I think in the end he went to sleep, I know I did, I hope he did. He is currently fast asleep on my bed, he has been for over an hour and half. At least he is getting some rest, I know I'll pay for it later when he refuses to go to bed.
Today was a better day than yesterday. His bouts of "seizures" were less and the length of period in between longer.
Apparently this morning there was an incident involving snot, mucas, sick and poo. I didn't have to deal with that, thank God. All I hear Dan saying was I didn't know someone so small could produce that amount of snot, it's amazing what the body is capable of distributing into your personal space.
Sunday, 11 May 2014
And in other news this week.......
Seizure smeezures......the boy can sit unaided, look at this video over two minutes, I switched off in the end as I got bored.....forgive my shrill voice, oh and wobbly camera holding, oh and drill captain Scarlett.
Huge milestone for Zack and one that a lot of people thought he would be unable to do. Proud.
Huge milestone for Zack and one that a lot of people thought he would be unable to do. Proud.
He can smile through them
I escaped to Rome for a few days, without any children or partner. You know, as you do. Well really it was part of my month of jubilee celebrations to mark my 40th birthday. I loved Rome, I loved the break but then I came back to draaaammmmaaaa.
Oh, that pain in the arse seizure city is back taunting Zack. Thing is we don't know if they are seizures or muscle spasms or a Zackism. They look very much like the seizures he had in November over a year ago. He ended up in hospital for three days pumped full of every conceivable drug, which, in the end, didn't stop them attacking him. It turns out following an EEG they weren't seizures and shortly after they stopped as suddenly as they had appeared.
At the moment we are in week three of these little beasts, that force him to go into a tight spasm of thrusting his head back and straightening his right arm, this batch of stiffen and release last for about 2 - 5 minutes with 20 - 30 minute breaks in between. I'm exhausted watching him, he must be fed up doing it. However, unusually he can smile through them, he is conscious and when he sleeps they disappear entirely.
We went for a meeting with his consultant and we agreed to give him an EEG to find out what's going on before we medicate or change medications. For the moment I have agreed to start him on a very low dose of Baclofen. A muscle relaxant drug, in the event that if they are muscle spasms then we have already begun treatment. I was very opposed to this drug as I don't want it to affect his muscle tone as his sitting and head holding is excellent. So far the small dose has made no affect on his tone and no affect on the "seizures".
The only other thing that is similar to this batch is that he has been very snotty, high temperature too. Our thinking is that he has or has had a virus which has caused his body to react in this manner. He seems to follow a pattern of this, some viruses affect him and some do not.
Wednesday we go for the EEG and hopefully, we can get a plan in place.
Oh, that pain in the arse seizure city is back taunting Zack. Thing is we don't know if they are seizures or muscle spasms or a Zackism. They look very much like the seizures he had in November over a year ago. He ended up in hospital for three days pumped full of every conceivable drug, which, in the end, didn't stop them attacking him. It turns out following an EEG they weren't seizures and shortly after they stopped as suddenly as they had appeared.
At the moment we are in week three of these little beasts, that force him to go into a tight spasm of thrusting his head back and straightening his right arm, this batch of stiffen and release last for about 2 - 5 minutes with 20 - 30 minute breaks in between. I'm exhausted watching him, he must be fed up doing it. However, unusually he can smile through them, he is conscious and when he sleeps they disappear entirely.
We went for a meeting with his consultant and we agreed to give him an EEG to find out what's going on before we medicate or change medications. For the moment I have agreed to start him on a very low dose of Baclofen. A muscle relaxant drug, in the event that if they are muscle spasms then we have already begun treatment. I was very opposed to this drug as I don't want it to affect his muscle tone as his sitting and head holding is excellent. So far the small dose has made no affect on his tone and no affect on the "seizures".
The only other thing that is similar to this batch is that he has been very snotty, high temperature too. Our thinking is that he has or has had a virus which has caused his body to react in this manner. He seems to follow a pattern of this, some viruses affect him and some do not.
Wednesday we go for the EEG and hopefully, we can get a plan in place.
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