Sulky chops

Oh did I say they weren't seizures, oh, hang on, no, they are most likely to be seizure related.

Huh?

Yeah, huh?

We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......

Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.

What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.

On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.

And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.

Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.

It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point. 

Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.

Zackisms

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.

He has suffered

October 29. That was the date I last blogged. A lot has happened since then, hence no time to blog and to be honest I didn't want to blog. I spent so much time thinking about things, talking about things that I didn't even want to write about all that was going on.

But first. Ho. Ho. Ho. Merry Christmas. We, presently are having a lovely time. Which makes a change from the rather awful few weeks we have dragged ourselves through.

For the past couple of months we have been suffering awful bouts of illness, ranging from coughs, colds, viruses that cause you to vomit and blinding headaches. I have been so ill that twice I couldn't muster the energy to look after anyone except myself and usually I just find some extra energy to carry on.

Scarlett has had colds and the croup but managed to fight them all off. But Zack, poor Zack, he has suffered. He managed to catch several viruses one of which had him coughing none stop for 24 hours. Illness on it's own we can cope with but on top of all this his epilepsy decided to rear it's ugly head. Zack began to have small little twitches down his left arm, raising his eyebrows and pushing his head back at the same time. It got so bad that they relentlessly continued and would not stop. We took him to the local hospital where he had a two day stay. Pushing drugs into his veins, raising his current epilepsy drug to it's highest dose and eventually sending him home slightly better. In fact we had a week of going back to normal and then he got a bug again, high temp, vomiting, usual story. And again the same seizures appeared.

Fortunately we had an appointment with his neurologist and where sent to Alder Hey for an EEG to see if he was in non-convulsive status. So far we haven't heard back from the hospital and are hoping for some answers tomorrow.
Zack has started a new drug. Sodium Valporate, he's had it before when he was a baby. We are hoping that when he gets to the right dose that it will work. At the moment he is better but not how he used to be, he isn't having seizures all the time but he is having little batches throughout the day lasting about five minutes in length.

Despite all the rubbish that has happened to him, he still smiles and laughs every day. And he is having a most excellent Christmas. Got his own dark room, not for his photography hobby but for all his new light toys that Santa brought him.

I am hoping that 2013 will be much quieter for us and healthier. Either that or I am wrapping the house in cling film and never leaving. Ever.

Nanny P thought he sounded like a little pigeon

Zack went for his fourth EEG. It didn't help that he got stressed on the journey there. He decided to take a dislike to his new car seat. By the time we arrived, he was clinging on to the harness for dear life, panting away with a red face. The poor little guy then had to be put in his pram which includes yet more harness, so again not happy. By the time we eventually got to the EEG department he was extremely annoyed. 


The receptionist came out for a cuddle with him, I just worried that he may actually spit all over her. She was more bothered about telling me how much she loves babies and has a new 9 week old grand-daughter. I was still bothered he might spit all over her.


Just before we were about to go in Zack managed to be sick so I told the nurse to give us five minutes. This was taken to mean come over and stand next to us whilst I try and calm Zack down. So no pressure to get a move on then.


Once we were in I said that he was a bit distressed, but they continued to wind him up even more by sticking the electrodes all over his head. And to top that off popped on a nice net bonnet. Great. Zack continued to be upset. By upset I mean this. When Zack is anxious he bends his arms at the elbow and opens and shuts his hands as though he is trying to grab something in mid-air. His breathing also goes a bit quicker. This usually happens when he isn't comfortable, is getting stressed or is going to be sick. Sure enough he was sick. But the EEG continued and the filming of the EEG continued too. Nothing was stopping this session from taking place. 


Whilst we were there Zack managed to do two of his subtle spasms. I pointed them out to the nurse and she said that there was a slight change in his brainwave pattern when he did it. She then came over and said ooooh lets shut your eyes now and proceeded to place her finger tips over Zack's eyelids to close them. This only added to Zack's increasing annoyance. I asked why she did this as I hadn't seen this performed during any of our other tests. She said that it was to see if it causes any changes in his brainwaves. 


Test over we were free to go. Zack wasn't for going in his pram so I carried him a bit of the way but he's a weighty bloater so I popped him in his pram and told him that I can't carry him forever and he would just have to lump it. He responded by trying to hold his breath and making his face red. When back at the car I got him back in the car-seat and accidently caught his hair as I was lifting him up. This resulted in a how could you cry and then he didn't speak to me for the rest of the journey. It was a very stressful morning. Not helped that he was starving hungry too.


We stopped over at the house of Nanny/Grandad Price were he got fed and fell asleep and I got a sausage sandwich. 


When he woke later on we managed to get him smiling and even some I am really enjoying myself vocal noises. To which Nanny P went "he's just made a noise, he's just made a noise". "Yeah I said that's what he does when we chat", you know like it was no big deal but really it's the most cutest little sound ever.  The best was when I laid him over my knee and pretended he was superman that resulted in super laughs. Nanny P thought he sounded like a little pigeon. A cute one though.


We go to see the neurologist in about a weeks time so we should have the results of the EEG then. However I have noticed that his spasms have gone down to about 2 or 3 again. So I think that they may have increased before because he has been poorly. He has been a bit rough with a cold (which I think he caught from school) and it is common for seizures to increase when ill. That's my thinking but I suppose all will be revealed.

the steroids did not work

The smiling still continues. It continues at 3.30am in the morning when Zack woke up and thought it would be nice to smile at his mum in bed. Not daddy though. Just mummy. Who now spends most of her time entertaining him with loud shouting, bad singing and rubbing of arms and legs only because this gets the most smiles and every one of them still amazes me.

After our good news we had some bad news. The last EEG that Zack took showed no change, if only minimal, to the hypsarrhythmia in his brain. This meant that the steroids did not work. I said that. I knew from the beginning they weren't working so the next line of attack is a to try the next drug, Vigabatrin.

We went to see the doctor to discuss this medication and Zack's treatment. Apparently steroids are the first drug of choice in treating infantile spasms, followed by Vigabatrin. Due to infantile spasms being so uncommon in children not many studies have been done in the use of medication and the ones that have showed that those two drugs seem to work the best. The steroids however, did not work for Zack.

It is with huge disappointment that we are having to give Zack this drug. As well as making him sedated for the first couple of weeks another side effect is that it can damage the peripheral vision to his eyes. This is has only happened in a small percentage of children and it is thought that it happens usually when children are on the drug long term. So the plan is to give Zack this drug for six months. Hopefully this won't affect his vision. We have had to way up the chance of allowing Zack to develop to the best of his ability against the possibility of losing some of his sight. It is a hard decision but as Dan has said we don't know how good his vision is so if this drug works it could increase his vision and his ability to do other things.

To be honest I don't feel like I have a choice, I can't leave him as he is without trying to stop the infantile spasms. Whilst the actual visual spasms we see have greatly reduced his brain is constantly fitting because of the hypsarrhythmia, this in itself is making it harder for him to understand or do anything so we have to give him a chance. If this drug doesn't work then we may be looking at steroid injections and after that well, I don't know. I pray and hope every day that something will work, deep down I have a good feeling that we will get there, eventually.

We have decided to start the new drug after Christmas. I just want to have a couple of weeks without new drugs, appointments and worry, plus it isn't going to be much fun for Zack if he is sedated for two weeks. So come the new year, come the new drugs and fingers crossed more good fortune for Zack.

Zack smiled and laughed

Zack has been working on his smiles. He does it every day now. Not all the time but a few times a day and it is wonderful. We even had a big break through.

I took Zack for his EEG at Alder Hey. He had finished his steroids the day before and he was having his third EEG done to check whether the hypsarrythmia had stopped. We got taken into the room and the nurse went off to get him some toys. Oh, okay I said thinking well he isn't going to be very interested in them but go on then. She came back with an assortment of noisy toys and I picked up this little clacker toy that when shook made a loud clacking sound. So I nonchalantly waved it in front of Zack's face and there was the biggest grin ever. Well that was it, shake, shake, clack, clack. Followed by oh my God, he loves this, where did you get it, I'll have to get him one. The nurse was kind enough to give us the toy as she thought it was so lovely that he was smiling and obviously loved this new adopted toy. He then proceeded to sleep through his EEG and then off we went to see his Grandad. (Nanny was off on a cruise and wasn't being ignored in case you were wondering). So I told Grandad P. about his new toy and shook it in front of his face......nothing......not interested. He might be hungry I thought, I fed Zack and he seemed a little more content, we tried the toy again. What a response. Zack smiled and laughed. We would shake the toy, wait and then he did this cute little laugh sound and even made some proper baby noises. The other big thing was, he didn't have his hearing aids in, it was fantastic, he continued doing this quite a few times I couldn't wait to come home and show his dad.

I got home, Dan came in, I plonked Zack on his knee, watch this I said. Clack, clack, clack............Zack started crying. Oh. I'll try again. Clack, clack, clack, nope not interested. I explained to Dan what had happened. But from that day on Zack has not reacted to the clacker toy like he did at Grandads. But what he has been doing is finding other things interesting like a jangling bell, rubbing his hands, talking to him. He will smile. Its great and a big step forward.

Other good news for this week was that we went to get his eyes checked out. The optician took a look to see if he needed baby glasses. He doesn't. Everything looked normal. We then went to see the consultant who looked into the back of the eyes and everything looked okay there. She said that we need to continue with stimulating his vision as the development of it may be a bit slow due to his injury but there is nothing wrong with his eyes. At last an appointment that we went too were we haven't come away with bad news.

We are now just waiting on the results of Zack's latest EEG. His seizures have now either been the same in number or slightly less, either way they haven't stopped completely.

Zack had his physiotherapy and did very well. She said that it was the most awake she had seen him and he was very relaxed. He even managed some smiling whilst in tummy time and he hates that. We took a look at his high chair and he promptly displayed his ability to try and escape from it but we agreed to try and sit him in it in short bursts to get him used to the new seating arrangement.

Zack went to his first Christmas party the other day and slept through most of it. The party was organised via some wonderful parents from the forum Special Kids in the UK. They did a great job and it was really good to meet other parents who have children with special needs. It was lovely to see the children enjoying themselves, disability or no disability. Shame Mr Pants slept through most of it but by next year he will be much older and possibly more awake!

He looked like a poor excuse for a member of a notorious LA gang

Zack went to Alder Hey today. We met with the Doctor at the Child Development Centre who suggested we took Zack to have an EEG due to our concern about his spasms. 

The EEG measures the electrical activity along the scalp produced via the brain, it can also let us know if Zack's little episodes are seizures or not. 

Zack had electrodes dotted all over his head and when I looked behind him he reminded me of Predator, you know the big alien thing with dreadlocks. It got even worse, to keep his little electrodes on he had to wear a hairnet that tied underneath his chubby chin. He looked like a poor excuse for a member of  a notorious LA gang. I think the tying of the net bonnet finished him off.  In protest he ripped out his NG tube and then cried through the whole thing.

Fortunately, he had two little episodes, these were recorded on film and the nurse noted down at what point they happened. This way we can try and get some answers. We won't find out the results until tomorrow or early next week.

I am hoping that he doesn't have infantile spasms and I am also hoping that if he is not suffering from seizures as we don't want to dope him up with medicine that will make him less responsive to all the stimulation we are giving him. But I suppose we will cross that bridge when we get to it.

I have found an excellent charity called Cerebra (link on the right). They provide help and advice for parents of children with brain injuries. They also have a lending library that will loan you books and sensory toys for free. It's fantastic. I ordered two books and a bubble lamp for Zack. I very nearly went for the suitcase of sensory toys but I had the feeling that I probably would have been more excited about them and Zack would have just fallen asleep. Best to stick to one item at a time. But seriously, I want that suitcase!!