Niamh's Story in Detail

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Niamh's Journey

Weaning the Drugs & Starting the Ketogenic Diet

Over the next 6 weeks we weaned all her anti-convulsant drugs and Niamh went into status (state of continual seizures) for 4 weeks and into a persistent vegetative state for 2 weeks.

We had heard weaning would be tough - we just hadn't appreciated how difficult it would be. We just sat beside her – hooked up to monitors and oxygen just watching her shake like a little jelly day and night.

During this time I read a lot of information on benzodiazapine withdrawals.
It seems that many people take several attempts to withdraw before being successful and many people who had never managed it (due to the intolerable side effects and withdrawal seizures).

To make things worse, Niamh's rescue drugs were no longer effective as they were from the same family as the drugs we were weaning.
We had moved on to Paraldehyde as a rescue drug, but that was no match for these withdrawal seizures and in the end, we just had to be brave and let her body deal with the withdrawal itself.

However, during that time something amazing happened.

The last two weeks of the wean, her body had appeared to shut down (in so much as she was unconscious/non responsive but was no longer shaking).

Then out of the blue one day in early June 05, she just opened her eyes – she had stopped fitting.
The ketogenic diet had kicked in and her seizures had completely stopped!

Over the next few months, some things started to come back to Niamh. At first it was just wiggling her toes, then fingers. After 2 months she had learnt how to cry again and had given us a very long awaited smile!  

Living On the Ketogenic Diet

Because of Niamh’s feeding problems, and her persistent problem with reflux, she had had a gastrostomy fitted (a tube directly into her
stomach).
This became her only route of feeding as she was not able to properly coordinate her swallow so eating orally became dangerous for her.

Niamh was given a liquid only ketogenic diet in the form of a ‘formula feed’ called Ketocal which was put into her gastrostomy tube.
I have to say that I was pleasantly surprised at how easy this was, considering all the things I had read about the diet before we started it.
It was just like making up her baby formula milk.

Over the 2 ½ years Niamh was on the diet, we mainly used Ketocal liquid formula but during times when her stomach was particularly bad
we also tried a modular version of the Classical diet (where you add all the components separately). This was slightly more tricky, as Niamh was fed so slowly that it all used to separate out before it got into her, so on a couple of occasions she had her full daily dose of carbohydrate/protein in one go, followed by her full dose of fat! – for those of you that understand how the diet works, this was not good and left us with a very poorly girl.

Fortunately, there was no lasting damage done and as with everything, you quickly get used to the new regime and work out for yourselves ways to overcome the problems - it soon becomes second nature.

Picture 015

Coming Off the Ketogenic Diet

Despite the fact Niamh remained seizure free from 6 weeks after commencing the diet (with no extra anti-convulsants on board) we had a tough decision to make when she reached 3 ½.

Niamh was just not able to gain weight. The high fat content of the diet had proved just too much for her already very poorly stomach to cope with and she had reached the point that she was so underweight she was at risk from organ failure.

We made the very difficult decision to stop the diet in early 08 and accept the possibility that her seizures may return.

We had a further 6 months off the diet with no seizures followed by six months of very mild seizures – no where near on the scale of pre-diet.

We are very glad we tried the diet for Niamh as it gave us an extra 3 years with our little girl that we thought we wouldn't have.

Underlying Disorder
Good Times