Re: help needed-/Zaki

[Guest guest]

Reading about any Dr that would prescribe a once a day only dose of any of the

benzodazepine meds makes me pretty nervous - none of them have an active

half life long enough to dose like this - especially ativan - it is an impacting

hard hitting med, which is why it is good for status events etc, but it actually

has a very short active half life. The implication of this is that once the

blood level starts dropping, you can end up with interdose withdrawal seizures.

Because the GABA (the brain's 'calming' chemical) is being artificially topped

up via the med, this eventually results in a compensatory process occuring -

where less natural GABA is produced. This results in even more neuronal

excitability before the next dose is due than if you had never started him on

it. Very risky, and not a move I would think is a good one.

The benzodiazepine medications can also alter sleep patterns, and although it

often looks on the surface like less clinical sleep seizures are occurring,

(because of the concurrent muscle relaxant/sedating effect), an EEG often shows

the sub clinical seizure activity is actually increased. This is because these

meds can result in less deep REM sleep, and the time that most epileptics are

more prone to seizure activity is in non REM sleep. With more of this non REM

sleep time occurring, odds are there is likely to be more fallout as a result.

So my 2c - I personally wouldn't go there....

As for where to go from here....if you only dropped the cals last week, does

that mean that the lb weight gain put him at the 50th percentile for weight? If

that 24.7 lbs is where he should now be on the growth charts, then I would maybe

give it a bit longer to see how he goes, as I think looking at the tables, the

stats you are using now sound about right - I came up with a cal need of approx

757 and prt of 13.46, but obviously it also depends on his activity level etc

too.

How are you spacing his meals? Is there a period were he sleeps in the day?

Are you monitoring blood ketones?

----- Original Message -----

From: jcksnhthr

History:

Well Zaki (18months) has been on the diet since the 25th of October -

Zaki's seizure activity (myoclonics)has actually increased during

this time as well as the severity. He had around 50-70 a day before

starting the diet - we saw 78 a new high in the hospital during the

fast - now he is up over 100 most days and they seem to be more

irritating to him - They are also waking him up during sleep and

keeping him up?? His keytones were 40 building to 80-160 at night -

we lowered the calories by 100 ( he gained 1 pound over the month)and

now his keytones are consistently 80-160 all day.

We are at 4:1 790 calories (we dropped 100 last thursday previous 890)

13.7 g pro. I met with the neuro and the dietician today. The neuro

wants to put him on ativan at night (1mg 1/2-1 tablet) to try to stop

them while he is sleeping. Thoughts? I asked him I thought the diet

is better without the meds and he said that he did not think it would

hurt - he would email freeman. We are on NO MEDS right now! I

insisted on weaning before the diet as they were not working anyhow

and I had read up on it before hand. Zaki is 24.7 lbs 34 inches 50%

weight and about 80% length. My biggies

1. What about the ativan at night?

2. What about the increase in frequency and severity of the seizures?

3. Suggestions on what to try next

Thanks, the rookie

Zaki's mommy

On a positive note - We had just finished a series of ACTH before

initiating the diet (26 days seizure free) and a trial of lamictal

very low dose after that- he did not tolerate it well BUT I have seen

more developmental milestones and fun new things over the last 2

months without and meds than we have seen in the previous 9 months.

His development met a plateau - now he is doing some more

age/developmentally appropriate activities and is so much more

happier not zoned out- today he helped me to turn the pages of a

book:)