Looking for ideas and "Dutch mom"

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captnkirk

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Thought "mom" might have some helpful suggestions but can't seem to connect direct.

I have a son 13, lgs since 99 and on keto diet and 2 AEDs since 2002. We can't get team to remove either and not convinced they are not working against each other. Still has many seizure daily and started into clusters this last week. Tylenol seemed to help with no fever but still needing 2-3 ativan nightly to settle. Looking for guidance and encouragement re what next to try. Running lo on ideas and hope. Thnks
 
 
Thanks Nak, haven't been very active here last months but your PM was sent to my email.


Hi Captnik,

My son was born in 1999 and is diagnosed with LGS since 2002. He has been on classic keto since 2004, ratio 4:1 at first and later 3.8:1
We do have periods with hardly any seizures and periods with mainly short tc's and tonics for almost 9 years now.

Before, the bad periods Always were related to low ketosis. We had to puzzle with calories and ratio to get him stable again. Sometimes he has seizure periods with no loss of ketosis. It's hard to find out what causes this.

When he has seizures, they still are significant less frequent compared to before the KD and they are short, max. 30 seconds, instead of 5+ minutes like before. We don't have to use meds anymore to stop him seizing.
So we just go on on doing keto, when we try to wean it off, as soon as ketose levels are below 3.5, his seizures become a nightmare.

I think the diet always will be a continuing puzzle, especially while he is growing and is in his puberty now. We need ajustments in calories and ratio every 6-12 months.

Your son must be an adult now? So ajustments are more difficult. Have you tries calory reduction? And decrease of increase the ratio? Tried supplementing with carnitine?

You could ask the people from Matthews Frieds for advice, they have so much knowledge and experiece, also with long term keto diet.
www.matthewsfriends.org -> Family forum
 
Thanks

wow thanks for the speedy reply!

Kirk (my son) has tried carnitine but had problems, can't recall what specifically now, I'm not convinced our diet team has tweaked it well enough but your suggestion re: new calorie adjustment is likely spot on. Although he hasn't gained any weight..maybe that's the problem - too little.

Was wondering if you'd heard anything re: Modified Atkin's diet since our son has been on this keto: rcf formula/polycose/oil only for 7 years. Looking for a break for him re: quality of life and concerned for his liver and kidneys.

Do you use Potassium liquid for renal concerns? Thanks again!! :)
 
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