Re: help needed-susan

[Guest guest]

Thank you so much for your reply! That would be giving us the opposite effect

that we are trying to obtain now wouldn't it? Infuriating! The neuro was trying

to prescribe something to help him sleep - hoping that more sleep would help

with less seizures during the day. I have not started him on it because I don't

want to do any AED's sinse we have already weaned and he is off for now with the

diet. I want to try the melatonin I think.

The 24.7lbs is where he is at after a week at the lower cals he was at 24.24 a

the hospital at initiation and at 25.4 about 2 weeks ago. The 24.7 puts him at

the 50% - according to the dietician - I do not personally have one of the

growth charts. I am going to start taking his weight weekly same time same

clothes - we were not doing that before we only did it at 1 month on the diet...

AS FOR ACTIVITY - he is none stop action, I do not know how he keeps going

because I can not remember the last time he has taken a decent nap or had a good

nights sleep. He eats 4 meals @ 7:30 11:30 3:30 and between 7:30-8:00 we are

giving " regular " foods for the first three meals - and an " eggnog " for the

bedtime meal - I use ketostix not a blood monitor - where do I get one of those

that checks the glucose too - I did not find one on the internet??

Thanks for everything - He is not a surgery candidate and we have almost no hope

besides the diet right now - the AED's have not been even a little bit helpful

and the seizures and severity are increasing - I do not know what to do.

mommy to Zaki 18months still trying to figure things out

Re: help needed-/Zaki

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:)