Well since I last blogged, things haven't really progressed that much - I don't think. Results are in from the endoscopy biopsies - it shows microscopic inflammation. We had another meeting with the gastroenterologist and a dietician. Gastro guy is quite keen to try and control reflux with medication and as Omeprazole doesnt agree with Ryan, he's on Ranitidine. His Domperidone has also been increased too. Dietician feels that Ryan is an 'ideal candidate' for the gastrostomy though - due to the length of time feeding and drinking takes as well as the amount of meds he's on now.
When he was in hospital on 12th Mar his weight was 32.2kg - 6 weeks later he was down to 29.8kg. This is what I was scared of happening - we're trying our hardest to keep him fed enough - its just so difficult!! We're due back to see them the 1st week in June (I think) and we'll see what his weight is doing then. This is something we've never had to deal with - he's always been a good eater and consistently put on weight. Nobody seems to be tracking his weight though so thats gonna be fun convincing them!! We do have copies of various discharge letters detailing his weight so we at least have those!!
Neuro also popped in during that meeting to tell us that the muscle biopsy has come back and for once - its not a 'normal' result. However, this doesn't really help any because she doesn't know what it actually means! We're waiting on another appt to see her to discuss further. One of his seizure meds has been increased again so hope it takes affect soon!!
We mentioned to her too that he's losing the ability to sit - he's never been able to sit unaided but could kinda maintain the position if held a bit KWIM?? Well for the last month or so this has gotten worse - he just falls over now. We were concerned that his spine was worsening, or he was degenerating but I think really it boils down to his weight loss - he's already severely hypotonic and I guess any weight loss will impact him quite a lot. At least, I hope to goodness that this is whats going on!!
It's starting to look a lot like...
2 months ago