[tadeja]

Gail, I wish you a REALLY good luck on the wean. Matthew and you seem to be old timers here though...

Tadeja

[shgreukaca]

Gail Hall, on Jan 11 2007, 01:54 PM, said:

Hi there,
Hi Gail,

I have been up until now just reading different peoples stories etc. I just read yours and Matthews. All I can say is wow and I hope we get the same response from Euan. I watched the video you made twice, the first time in total amazement with welled up eyes and the second time in awe and with tears streaming down my face. Stories like this just bring such hope to us, other families going through exactly the same things. Just wanted to say thanks for having it on here and giving another family the hope of a much brighter future. Probably talk to you again on Wednesday. Bye the noo hun xx
Been promising to write up our clobazam wean fully for some time - bit of an epic this I'm afraid!

Gail

Background

In April 05 we were forced to wean Matthew off the MCT ketogenic diet due to tolerance problems – he had chronic diarrhoea and had lost a significant amount of weight. By the summer his epilepsy had got worse and clobazam was introduced – initially as a rescue med and subsequently on a regular basis. Whilst it was very effective initially, after about 3 weeks the seizures would return and the levels would be raised. He became increasingly unresponsive and appeared “doped” – his eyes would look out of it, less speech, increased ataxia – very wobbly. We reported at the time that the cost in terms of quality of life was too high a price to pay for the temporary improvement in seizure control. He also experienced tonic seizures in isolation for the first time, which was attributed by our consultant as relating to the progressive nature of his epilepsy, rather than the addition of a new drug – I disagreed with this view.

In October 05, I started him on the classical form of the diet and began weaning clobazam. We saw some improvements in awareness, but with each tiny reduction we would get 2-3 days of significant fallout – more tonic-clonics, tonics, pronounced Non-Convulsive Status (NCS). We continued to reduce by about 1mg per 3 weeks until June 06, when we had reduced from 17.5mg per day to 8mg per day. Unfortunately at this time we had a prolonged period of NCS (5 days) and were forced to increase back to 15mg per day.

Throughout the summer of 06 we worked hard tweaking the diet and introduced carnitine supplementation – this was the most positive step that we had ever made – the improvements were immediate, both in terms of seizure control and increased awareness / cognition. We constantly requested clobazam reduction, as it had never offered more than transient seizure control.

In November we saw a second opinion neurologist, who finally gave us the go ahead to reduce clobazam, with a rather unusual reduction plan, working on fairly large reductions to be made on alternate days. Matthew was actually in NCS at this appointment, so I was very surprised that the cons agreed to a reduction.

Our schedule...

Week One – Two – 15mg on alternate days, 7.5mg on alternate days
Week Three - Four – 15mg on alternate days, no meds on alternate days
Week Five – Six - 15mg every three days
Week Seven - Eight - 7.5mg every three days
Week Nine – No meds.

This is covered in more detail, with fallout comments below. When we discussed this at the appointment, I never thought for one minute that it would work, considering the fallout we had during our previous reduction attempt.

The fallout

Week One - Two

Day 1 5g am, 10g pm
Day 2 2.5g am, 5g pm
Day 3 5g am, 10g pm
Day 4 2.5g am, 5g pm etc

During this first week, he was fairly subdued – he was already in NCS at the start of the wean anyway. On day 4 he had 2 tonic-clonics during the day and was quite sleepy. On day 5 he had 3 brief tonics. On day 6 he had 2 brief tonics, but by day 7 was recovering and starting to brighten up. He had one brief T-C’s on wakening on day 13, which was not unusual at the time – pre weaning he would have TCs on wakening 2-3 days per week.

Week Three - Four

Day 1 5g am, 10g pm
Day 2 nothing!
Day 3 5g am, 10g pm
Day 4 nothing!

On day 4 he was very quiet through the day with a TC at 11pm. Day 5 – TC at 9.30 am, 3.30pm, NCS between, quite twitchy but we didn’t give any rescue meds. Day 6 – brighter, no seizures. Days 7 – 14 – increasingly alert, more speech, more eye contact, no seizures.

Week Five – Six

Day 1 5g am, 10g pm
Day 2 nothing!
Day 3 nothing!
Day 4 5g am, 10g pm
Day 5 nothing!
Day 6 nothing!

Again on day 4 he went quiet, but this time there were no seizures, and although he was quiet he didn’t have obvious signs of NCS – he was fairly “with it” with no twitching. After two days he again brightened up with continued progress on the awareness / cognition front. He started to play with toys that he hadn’t been interested in for some time – e.g. doing jigsaws well. He started to call his classmates by their names. He had one very brief TC on awakening on day 14 – the longest period we’d ever been without this previously fairly common seizure type.

Week Seven – Eight

Day 1 2.5g am, 5g pm
Day 2 nothing!
Day 3 nothing!
Day 4 2.5g am, 5g pm
Day 5 nothing!
Day 6 nothing!

Again, he was slightly subdued from day 4 onwards, no NCS.
He had one brief TC on wakening on day 9, but was otherwise seizure free and NCS free.

Week Nine – No meds!

This brings us to our current position. He had his last meds 8 days ago, and did NOT go quiet this time around – anything but! We have had NO seizures and NO NCS. His cognitive improvement is quite remarkable – recognising numbers, colours and letters. He has MUCH more interest in the world around him, excellent eye contact, dragging me off to show things to me. Talking to his sister and his peers at school (previously only really interacted with adults, and then only VERY limited.) Constantly asking for the names of things and reusing this new vocabulary appropriately.

I am truly amazed by the success of this wean, both in terms of how little fallout we have had, and the cognitive progress achieved.

It would be difficult to pinpoint WHY this has been so successful – we had by no means reached seizure freedom prior to starting the wean, although the diet HAD decreased frequency and severity. NCS had been a significant problem prior to the wean, yet we have had no recurrence during it!

Neither can I explain why this wean was so successful compared to our previous attempt. Two factors are slightly different – firstly Matthew is on a higher ratio (4:1) than previously (3:1). Secondly, and my gut feeling says more importantly, we are now at a high level of carnitine supplementation – 20mg/kg, having introduced this VERY slowly. This supplementation has appeared to be our “magic bullet” in our continued striving to get the diet working successfully for Matthew. We always knew it had a positive effect on his seizures, but never really expected the success we are currently achieving.

A cautionary note:

I know that there are a few people on site that are currently experiencing difficulties with benzo weans, and our experience may appear very promising. Every child is different though and so I would strongly advise against ANYONE attempting our schedule unilaterally. You may want to print this off to discuss with your consultant, who would probably write it off as an “anecdotal” account! I would be VERY interested to hear whether this approach would work for others.

[kate]

I am revisiting this thread as we are about to start a clonazepam wean and i'm a little nervous about it!! want it to be as uneventful as possible as joseph has been having a rough time lately anyway, i really wish we could have got it out before it had taken hold.

anyway, i was just wondering if anyone knows if this wean would work for a clonazepam wean? i am presuming it works by using the half life of the drug and stretching the times between, rather than just taking it away. does anyone know how the half life of clonazepam compares to that of clobazam?

we have the go ahead to wean. joseph takes 1 0.5mg tablet bd. neuro suggests we wean by taking out half a tablet every 2 weeks. there is no way we're doing it that fast!!


have looked at comparison tables and 0.5mg of clonazepam is equivelant to 20mg so we are weaning the equivelant of 40mg clobazam....aarrgghh!!!

[karentow]

Hello all!

I am researching on experiences with Clobazam wean when I came across much discussion on MF. Thank you for all the sharing, that went back all the way to 2007.

My son, Mikkel is 7 and was on the diet from 2004 to 2006. He was forced to stop the diet adruptly due to stress on






his kidneys. It was a true shame as he actually became seizure free on it for the last month!! It was traumatic but well, that's over now.

I read with interest on the Clobazam weaning schedule that Gail shared (thank you Gail).

Week One – Two – 15mg on alternate days, 7.5mg on alternate days
Week Three - Four – 15mg on alternate days, no meds on alternate days
Week Five – Six - 15mg every three days
Week Seven - Eight - 7.5mg every three days
Week Nine No meds


Just wondering if you anyone has tried it altho NOT on the diet. For Mikkel, a re-trial with Vigabatrin helped him to achieve SF status since Jan 2010. We are in the midst of weaning Clobazam.


Dr suggested dropping half pill every two weeks. Mikkel started with 30 Mg (3 pills daily). The speed of weaning the first pill caused him severe sleeplessness and hyperness. It settled in one month.

Moving forward, I don't want the whole family to suffer sleeplessness if possible. Also, poor Mikkel was really exhausted from the experience.

Thankfully, no withdrawal seizures sighted from the weaning of the first 10 mg. We are now on to the next pill, which I have successfully weaned another 2.5 mg (1/4 pill) over the last week. I am wondering if I should try out Gail's weaning schedule but thought I should request for advice first from all of you out there with experience in weaning the nasty drug.

Would appreciate any advice from those who aren't on the diet but tried a similar weaning schedule. Did you experience withdrawal seizures similar to kids on KD described?

Appreciate feedback and sharing.

Cheers, Karen

[Emma Williams]

That weaning schedule is intended to work on the half life of the drug and has proved very successful with kids on the diet and off. Obviously there is no guarantee it is going to work as well for every child because we all know that every child is different (and none more so different than our kids it seems!) Our Epilepsy Nurse, Lisa, has used this on quite a few of her patients and swears by it and she also uses the 'tiny' method! Which is basically dropping by tiny amounts to try and minimise the fallout. If you drop the overall dose by the same amount every two weeks (which it seems is the most usual weaning schedule for most drugs) then as the dose goes down the percentage you take away actually gets bigger. So the lower you go the smaller the drops should be (therefore lower percentage of drug being taken away) and will hopefully minimise the fallout.

Benzo's are notoriously difficult to get shot of, slowly and carefully is what we recommend. Most of the time the neuro's give out the weaning schedule and then a lot of parents on here then slow it down even further and neurologists shouldn't have a problem with that - so long as you are not going against their wishes in the wrong way and taking it out faster than they recommend because that COULD be dangerous.

Hope that helps.

Emma.

P.S. Sorry to say but from experiences on here - it seems the hardest benzo's to get rid of are Clonazepam and Nitrazapam (that one being a particular nasty to get shot of).

[karentow]

Thanks Emma,

Just like I mentioned in my newbie entry earlier, yes, it really would make sense to adopt both approaches at the same time, esp for the end bit of the weaning. Like I said, if with 0.15 mg/day clobazam left to wean, a further drop by just 0.02mg/day is already 13% weaning! And it is challenging even with liquid medication to do such a small wean of 0.02mg (or ml). The smallest sryring is 1 ml!!






Mikkel is seizure free on vigabatrin for 3 months now. We pray that nothing will rock the boat so yes, I am extremely nervous with the weaning, esp. the challenges of the last 1/4 pill. Thereafter, we will still have Epilim and Keppra to wean. He's on four meds. GOSH!!! We need to get the clobazam out. Going by my strict 10% schedule, it might just take more than a year to get Clobazam out. What a challenge. I might just have to implement Dr Martland's schedule in the midst of the 10% rule.

Cheers, Karen