(Warning: This post contains poo references)
It’s been a while since I updated you on how Samuel is doing on the Ketogenic diet, so I thought I’d bring you up to speed.
Right, where to start. Things have been going quite well. Samuel had been having only a few seizures a day, mostly (if not all) in the evening and, I can’t believe I’m saying this, but we’ve had a few (just a few but even one is amazing) seizure-free days. As I write this, Samuel has so far gone 59 days since his last dose of his emergency medicine Midazolam. Pre-Ketogenic diet he averaged 14 days between doses, so we think this is pretty damn good.
Over the last few weeks we had noticed that his ketones had stuck on around 0.8. This is much lower than we’d like but the diet was still having a positive effect so we weren’t worried. The thing to make note of is what Samuel is actually doing rather than what the numbers say.
But, over the last week we’ve noticed more seizures have crept in during the day and although they may be short, they are very sharp and seem to unsettle him quite a bit. We’ve also noticed that he might have lost some weight. Samuel has always been like me, long and lean, but lately we’ve felt that he seemed a bit less podgy in certain areas.
Anyway, we got him weighed and sure enough he’s dropped some weight, which was particularly frustrating as we’ve been trying to fatten him up.
But don’t worry reader, we think we are on to it.
Today we handed in two poo samples to the hospital. One is to check whether Samuel has an infection which could affect weight gain and possibly ketone levels. The second sample is to check for fat globules in his poo – it could be that Samuel is effectively pooing out the fats so therefore he isn’t benefiting from them (this is what the dietician thinks the problem is, especially after seeing the consistency of his poo). If this proves to be the case, they can give Samuel a supplement which will him help him properly absorb the fats.
While we wait for the results, we are changing Samuel’s feed from powder to liquid. It is essentially the same feed, but there is thought that sometimes children who use a powder or liquid feed, tolerate one better than the other, so we are giving it a try. The liquid form of the feeds contains more fibre, so that might add a bit of extra excitement to nappy time!
Samuel’s new liquid feed
Drug wean 1 update – We are in the processing of weaning Samuel off one of his drugs, Topiramate. The wean is going well and sometime mid-September, Samuel should be off the medicine completely. He will still be on two anti-seizure medicines but the fantastic thing is that for the first time we wont be replacing this drug with another seizure medicine.
UPDATE: Since posting this, Samuel’s seizures have got worse and we had to give him Midazolam on Friday afternoon, ending his fantastic 60 day run. His poo nappies have got worse too, so we are hoping that once the lab results come back we can then start him on the supplement to help him absorb his fats better.
Tricky Customer 