Sorry I’ve not been updating the blog much. There always feel so much to tell you, but sometimes I struggle with getting it out.
So, the Ketogenic diet. Samuel has been on it a year now (hasn’t that flown by quickly?!). If you’ve been following our journey for a while, you’ll know that we did have success with the diet in the very early days. In fact Samuel had a couple of seizure-free days, which is simply amazing given the poor boy has multiple seizures every single day.
But then it all went downhill. In September last year we realised he had not just stopped gaining weight, but was starting to lose weight. It seemed that he wasn’t absorbing the fats from the diet, they were coming out in his nappies instead.
So we moved to the MCT version of the diet which saw him start to put on weight very nicely. Seizure wise though, it’s been the usual rollercoaster. Some weeks good (but never seizure free) and some weeks very bad. We’ve also had to increase his medicines recently as he just needed some extra help.
We’ve decided to give the diet another 3 months. If we feel that it isn’t helping Samuel then we will start the process of weaning him off. The diet will then be replaced with a drug, possibly Topiramate (he has been on that before and it was probably what got us home from NICU in the early days).
But, we are going to give it one last shot. He was weighed last week and is now an even cuddlier 11.8kg, so we have room to drop down the calories again. So this will be the test. We will see if this change helps or whether we need to move him on to another medicine which hopefully will have more of a consistent effect for him.
Although I’ve been the person to start the conversations about coming off the diet, it does break my heart. I so wanted it to work for Samuel. There is a very lovely young girl I know who is a few years older than Samuel and has been on the diet for some years. She is an amazing advertisement for what the Ketogenic diet can do. She is almost seizure free. I wanted that for Samuel, at the very least to reduce the amount of seizures he does have. I wanted to give his little brain and body a break. But it seems that for us, the Ketogenic diet just wasn’t meant to be.
For those who have been asking, this is our recipe (each feed now has 183kcals and ratio 4 x fat : 1 of CHO+ protein) for making up a feed for Samuel (he has 4 feeds a day):
- 54 mls liquid Ketocal
- 13 mls Liquigen
- 2 mls of Maxijul (1.3g/1 blue scoop of Maxijul, add 4mls water then give 2mls)
- 6g Carbohydrate-free mix (add enough water to mix into a smooth paste)
- Add water to make a total feed of 220mls
Only time will tell if this new recipe will make enough of a difference. But it’s worth a shot, isn’t it?
Other news: At a recent clinic meeting with Dr H, he suggested we start to use Chloral Hydrate (which is Samuel’s sleepy drug at bedtime) during the day when he is very unsettled and twitchy, but not necessarily fitting into the protocol for Midazolam, his emergency medicine. One of Samuel’s medicines is Clobazam which is part of the same family as Midazolam. When we are having bad patches and using Midazolam frequently, it could be effecting the same receptors in the brain that Clobazam uses which means Clobazam might not be as effective as it should be. So the idea is that if we nip things in the bud early with a 3ml dose of Chloral (there is also thought that it contains anti-epileptic properties which is an added bonus), it may stop the need to give Midazolam later.