A Samuel update

(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!

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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.

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Meeting with Dr H

This coming week we have an appointment with Samuel’s pediatrician and we have a lot to discuss regarding the Ketogenic Diet.

We are still feeling that it is working and certainly making a difference to Samuel’s epilepsy but we have noticed a slight increase in seizure activity in the evening (but still amazing compared to before) and he is far more sleepy during the day. Also his ketones are still really low. Really low. We seem to be stuck between 1.4 and 1.6 and despite changing the recipe (Samuel is fed a special formula through his gastrostomy, so I’m referring to changing the concentration of the feed) we seem to be stuck.

When I last spoke to Samuel’s doctor and mentioned about the excessive sleepiness (with the diet working, it is now like he is a bit over medicated), he suggested that when we come into clinic for our appointment we discuss reducing Clobazam. Now we love Clobazam. It bloody works. It is a very strong drug (it is sister to Midazolam, Sam’s emergency drug) and can cause extra drowsiness. We are nervous about reducing this medicine but do see that it could really help us have more awake time with Samuel.

But the drug I do want to discuss with Dr H is Topiramate. Now we do have a fondness for Topiramate as it basically got Samuel home from NICU. But he has been on it a long time and he is on quite a high dose (14mls twice a day) and I think Clobazam and his other drug Vigabatrin have superceded it. Last weekend, while frustrated with Samuel’s ketones and no one around at the hospital to speak to, we phoned Matthew’s Friends. We were lucky enough to speak to Emma, Matthew’s Mum who advised that Topiramate can cause acidosis in the stomach which can reduce ketone levels. Well isn’t that something? So that will be high on my list to discuss with Dr H.

Although his brain and body does seem to be responding to the diet, I’m not sure what it is doing with his ketones but I really want to see them increase and increase soon as it’s the one nagging thing about the diet. We need Samuel’s ketones to remain at a stable level between 2 and 5. Even when they have been high (they have been above 2 a few times), it hasn’t been consistent and they’ve come back down again.

Do I dare wonder what his epilepsy would be like when his ketones are at a stable high level? That is just too exciting to think about. But in the meantime, maybe this is just Samuel changing the rules again. I just wish he’d let us in on the new rules!

Medicine cabinet

You may not be surprised to know that we have a rather bulging medicine cabinet (well actually it’s a red box rather than a cabinet) with all the medicines needed to manage Samuel’s epilepsy, reflux and general bits and bobs:

Day in the life

Well there is no such thing really as a typical day for us. Sam makes up his own rules as he goes along – no two days are ever the same. But we do have to have a rough routine for his medicines so I guess that does keep us organised. This is how we roll:

  • 8am – Turn off the pump feed & flush through with sterilised water.
  • 9am – Give Samuel his medicines with flushes of water in between – Topiramate, Vigabatrin and Clobazam.
  • 11.15am – Give Samuel his reflux medicine (this is a new thing and I’ll talk about this more another time).
  • Noon – Sam starts his pump feed of good old Pepti Junior. After the feed we flush him through with water.
  • 3pm – Sam starts his pump feed of good old Pepti Junior with a sachet of baby Gaviscon mixed in. After the feed we flush him through with water.
  • 6pm – Sam starts his pump feed of good old Pepti Junior with a sachet of baby Gaviscon mixed in. After the feed we flush him through with water.
  • 9pm – Give Samuel his medicines with flushes of water in between – Topiramate, Vigabatrin and Clobazam.
  • 10pm – Give Samuel his bedtime medicine Chloral Hydrate which helps him sleep and flush with water.
  • 10.10pm – Start his overnight pump feed (500ml to run over 10 hours).

This is of course a bog standard day for us. This doesn’t include if Sam has had a bad seizure

Infinity Pump bag

and we’ve had to give him some Midazolam. We medicate if his seizure has been going on for 10 minutes or if he’s clustered and had four/five in 30 minutes. Midazolam is squirted into the cheek and then you rub the cheek to make sure it is absorbed.

Also this doesn’t include if we’ve given him Calpol etc. It still feels strange when we give him a ‘normal’ medicine as we are so used to it being prescription only and doses tightly controlled.

In addition to this I have to do regular care of his gastrostomy button. Turn it every day and give the skin area around the button a good wipe. I also have to replace the water in the button once a week.

Sam’s pump is very portable, we have a nifty rucksack to take it in so he can have a feed anywhere – the boy has eaten in restaurants, cafes, shopping centres, parks and the car.

So there you go. That’s how we roll in our world. Updated to be included as part of the BlogHop #definenormal. Pop over to Just Bring the Chocolate to find out more.