Re: reply to susan/stella klonopin etc

[Guest guest]

,

Stella is in the 60th percentile for height and dropped to 45th

percentile for weight, she is almost 6 now and weighs 44lbs. Her

weight has never changed much, maybe 1-2kilos max on the hospital but

then it will be the same as the previous measure the following month.

So yes she has grown in height. I'll have to get the exact info on

monday, it was a holiday over here.

more to our story in a few mins.

amanda

On Friday, November 26, 2004, at 12:37 PM, & Hill wrote:

>   When you say Stella's weight has stayed stable , what has

> happened height wise? Has she grown upwards whilst staying at the same

> weight? If so, this would already be a form of weight loss...if not,

> then with no height growth at all in 6 mths, it may in fact be the opp

> prob - too few cals?

>   is actually one where the attempt to reduce his body weight

> backfired on us bigtime, (twice) though I do know of cases where it

> has been what was needed for control, so personally.... I'm a bit on

> the fence on that one.

>   Is she actually 'overweight' according to her growth charts?

> isn't/wasn't overweight in weight/height ratio, but he wasn't on the

> leaner side either, and trying to make him so, in his case, was the

> wrong move - he went catabolic as a result, so I always get a bit

> nervous about the deliberate attempt at weight loss thing - if the

> growth height/weight ratio is not out of kilter weight wise already

> that is.

>   You're right though, if she has been less active, any calorie

> reduction would have been sort of cancelled out, and if she is one who

> who did need some weight loss for better control, then a calorie

> reduction might well be what she needs.

>   Glucose checks before meals are due, and then again as each meal

> 'peaks', approx 60-90 mins afterwards, as well as one just before she

> wakes in the morn would prob be a good indicator, along with plotting

> her height etc over the last 6 mths to see what has happened there.

>   400 mg lamictal sounds like a huge med dose, how much does she

> actually weigh? Half that, 200 mgs per day for was enough to

> make him v toxic (with resultant toxicity induced seizures - which

> actually accelerated into status) soon after starting the diet when he

> weighed about 23-25 kilos, is she much above that weight wise? Mind

> you, he had depakote on baord as well, which potentiates lamictal, so

> a sl diff scenario - but 400 still sounds mighty high though, esp when

> in ketosis...

>   Knowing the benzos and how hard they are to wean, I would still also

> possibly suspect some fallout there right now, either a prolonged diaz

> wean reaction still, or more recently from the klonipin - I used to

> feel like these meds were stuck fast to , and refused to let go!

>   The fact that 30 mgs diastat didn't halt the seizure activity either

> says that she is either 'way' tolerant of this class of meds now,

> perhaps even as was - 'in' tolerant, or that she is perhaps

> toxic on the lamictal - meaning that extra diaz doses etc would not

> help - sometimes make her worse. This happened with when toxic

> on lamictal - the diaz didn't touch him, but 5 days after a (biggish)

> lamictal reduction, another attempt at using it to break the cycle,

> worked.

>   I am picking though like me with , when she is a bad way, the

> last thing you want to attempt right now is a med reduction?

>

>  

>

>     ----- Original Message -----

>     From: astansfield@...

>

>

>     Hi there everyone, and happy thanksgiving to my fellow americans!!!

>     Oh I am so frustrated!!!

>     Here's a little background on what's been going on.  About a month

> ago Stella was having non convulsive status seizures with grand mals

> and myoclonics and drops thrown in periodically, she was due for the

> VNS on the 19th of November, but her diet/meds were not doing the

> trick so she was put on an emergency dose of klonopin.  For that week

> she was seiuzre free, then 2 days after the last dose she started

> seizing again, so back on the klonopin to get her through till the

> VNS.  She's had the VNS and her wean off the Klonopin ends today, we

> did the decrease much slower this time, and still she is seizing

> again.  I understand the stress from the surgery might be causing some

> of these seizures still, and the wean off the klonopin but is there

> anything i can do with the diet to help? 

>     Here are my thoughts/questions... She started with 1375 cals back

> in May since then she's dropped to 1225cals on a 4-1 ratio.  Becasue

> she is so inactive, hardly any walking or running around I think her

> body has adjusted well to the calorie decrease and maybe I should

> decrease again.

>     SUSAN after reading your paper from Boston, I'm interested in the

> weight reduction theory that when 20% of the body's weight was reduced

> better seizure control was observed.  Stella has not lost or gained

> any weight since May.  I think her lack of excercise has wiped out the

> benefit from the calorie reduction.

>     As far as meds go, she is currently taking 400mg of Lamictal, I

> weaned her off the diamox, no change in seizures (bad or good) and now

> Stella is down to one dose of 1/2 a .5g of klonopin a day, today being

> the last day for that too.  I understand her body is going through the

> withdrawl form the Klonopin and what that does to her GABA levels,

> however I'm not willing to put her on the benzo path again.  She was

> on diazapam for over a year and that wean was terrible, but we got

> past that.  I've not seen any benefit to any of her meds other than

> they control the status grand mals she used to have.

>     I'm wondering if any one has noticed any benefits to paying

> attention to the glycemic index when it comes to vegetables/fruits and

> if that makes a difference.  Again SUSAN from your article it makes me

> wonder if glucose has more to do with the control of seizures than the

> Betahydroxybutyrate levels alone. 

>     Call me crazy but I'm not giving up on this diet for Stella yet,

> her dietician here in WA is helpless, I'd love to hear some feedback

> from others out there.

>     Last night after a fairly seizure free day(other than the am) she

> had a massive GM while coloring, we did not give her the diastat.  She

> went to bed, had a dozen myoclonics, then another GM.  She slept until

> the early am when she had more GM's, we gave her 3 doses of 10mg of

> diastat and she still seized.  I realize her tolerance of benzo's is

> messed up now because of the klonopin, oh what to do.

>     Calorie change? should I start there?

>     thanks

>     amanda

>     --

>     Stansfield

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