Hiya, Patrick had his first outpatient appointment with his neurologist yesterday and I'm very sad to report that it wasn't a great day.
In general Patrick seems to be doing well but for the past week he's been suffering from severe stomach cramps that reduce him to tears. We had consulted our GP who put it down to constipation but advised us to talk to Dr Goodwin (his neuro) about it. We upped his laxatives which has helped his constipation but the cramps didn't subside. We managed to get some video footage of the cramps and when Dr Goodwin saw this she said that it was unlikely to be anything sinister but booked him in for an EEG just to be sure.
It turns out that these cramps are in fact seizures. As you can imagine, this was the worst news for us to deal with as we really thought they had the seizures under control and had now been focusing on his development problems. What makes it even more hard to deal with is that these seizures actually hurt him, to the point where he cries out in pain, they only way I can describe it is that it looks like he is being electrocuted, if any of you have ever played with one of those toys that give out an electric shock if you press the wrong button, it's like that but for a 4 month old baby who doesn't understand what's going on this is really harsh. I've said all along, we can totally cope with any disabilities and development issues he may have, but what we really struggle with is watching our poor baby in physical pain and being able to do nothing to ease it. Of all the different types of seizure he could suffer from, this seems to be the worst as he's never shown signs of being in pain before.
So, we can now confidently say that he has not got a vitamin B deficiency so we can now stop giving him the horrible supplements he's been on that make him sick. They have also confirmed that although these seizures look a bit like infantile spasms (west syndrome) his EEG results don't show this to be the case either.
So they need to play about with his meds again and try and find another combination that will work for him, the plan at the moment is to Stop the Pyradoxil (Vit B) and the Folinic Acid. They are also weaning him off the steroids (Prednisloane) and then will look at reducing his Sodium Valproate and introducing a new anti convulsant (Topiramate) but his Neuro has said that they need to get clearance on that as it is never usually used in such young babies which scares me a bit. We have also put him back on a low dose of Phenabarbitone as he didn't seem to be having these episodes when he was on this, unfortunately Phenabarb is only used as a quick fix and not as a long term solution. We are monitoring him very closely at the moment as we are anxious that this may spiral out of control again. We have been told that if they become more regular (4-5 an hr) we should take him to Poole hospital where they can up his meds and we really would be back where we started. At the moment he is having between 1-3 an hour, some more severe than others, they don't always hurt him.
So, we're back on the roller coaster for a while until we get this under control, we'll update you as and when we can.
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