Following last week's EEG she confirmed that the results from the test showed that it looks like he is having infantile spasms which they already suspected and which matches some of the fits he's having. Because he is having a lot of them and I think because they are not a good type of fit to be having they are going to introduce another drug. Starting tomorrow he'll be taking a short course of steroids. He will be on them for a week, then if they have not had much effect by then the dose will go up for another week. He will then be weaned off them slowly. If they do work I'm not sure whether they might consider putting him on them longer term but we are under the impression they are just temporry at this stage. There are a lot of side effects with the type of steroids he will be on which she made us aware of. He might be more irritable, and more seriously his immune system will be suppressed. We need to keep a close eye on his temperature and try to ensure he doesnt come in to contact with anything infectious like chicken pox. Should he get a high temperature or knowingly come into contact with something infectious we have to take him to hospital. He will also need his blood pressure testing every three days and his urine testing for sugar levels every week. The community nurse will come out and do this.
Usually Epilim (which he has been on for a while) would control infantile spasms well but it isn't controlling William's. While he is on the steroids they are not going to change any of his other fit medicines. We have to keep a close eye on his fits and try and keep a diary so we can see if there has been any effect.
We also discussed William's feeding and sickness. William has quite noisy breathing and has become quite raspy with a rattling chest in the last few days. The consultant has asked us to stop bottle feeding him for the time being because she is worried he is aspirating. She is going to try and speak to the speech and language therapist again about it. With regards to his sickness, it really comes and goes. It is nearly always triggered by a coughing and gagging fit. The consultant is going to refer us to a gastrologist to see if anything more surgical needs doing because the reflux medicines don't seem to be helping enough. They will be the people who will also look at giving William his PEG (percutaneous endoscopic gastrostomy) and may be able to discuss that with us.
On the plus note, despite the sick, William is putting on weight well and has now jumped from the 9th centile to the 25th reaching the grand total of 14lb1oz!
We may be in for a boring couple of weeks trying to keep away from infectious things! For those of you who are fans of the medicine song, we have a new verse to add in...
Let's give you Prednisolone, Prednisolone, Prednisolone.
Lets' give you Prednisolone to stop you having spasms.
I think that's all for today!
No comments:
Post a Comment