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Latest from our Forum Latest from our Forum http://forum.matthewsfriends.org Thu, 17 May 2012 13:59:05 +0000 30 Latest from our Forum http://forum.matthewsfriends.org/style_images/logo4.gif http://forum.matthewsfriends.org Going Round In Circles http://forum.matthewsfriends.org/index.php?showtopic=4480
Can anyone relate to this pattern?

Over the past 8 months my son Jack (query doose syndrome) is having one month seizure free with no ncs, looking great and attending his mainstream school like he did before epilepsy arrived to the following month being in deep ncs, being unresponsive with lots of seizures.

Jack has been on the diet for nearly 3 years now starting on a 4.1 ratio, the ratio was then increased 10 months ago to a 4.25 -1 ratio to improve ketones and get the last of the benzos out. Jack has been benzo free for 8 months now but still remains on low doses of topirimate, sodium valproate and the diet still at a 4.25 - 1 ratio.

I'm just confused with it all now, as there is a pattern to having one great month to one awful month calorie changes are made every time he goes into deep ncs. Jack is much better with higher ketones so 4 weeks ago liquigen was introduced. Jacks ketones improved again so once again he was great for 3 weeks with no seizures and no ncs but as always night time seizures set in again and he is now back in non functioning ncs.

I did start to wean sodium valproate 2 weeks ago but only by half a ml in the morning.

I just dont understand why one month Jack is great and the following month he is just awful, could it be the ratio? the drugs? the liquigen? do I need to introduce carnitine?

I feel so lost with it all now, any input is much appreciated.

thanks leigh x]]> Thu, 17 May 2012 13:59:05 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4480 Going Full Circle; Seizures Back In Numbers But Why? http://forum.matthewsfriends.org/index.php?showtopic=4478
Things are going very strange here.

Any thoughts would be brilliant.

In a nut shell: (and Gordon Ramsey style...)

Xanthe; 5, on diet for 2 years.
weaned off Topiramate
1/2 weaned off Epilim
weaned off clobabzam as of 6 weeks ago.
3 weeks ago was averaging 2-3 seizures a day (small drops or myoclonic)
had flu, 3 days of no seizures!
as of last monday suddenly 10 - 15 seizures a day.
Ketones remain good (2+ in am, 3/4+ in pm)
Has relearned lost skills, happier and brighter off clobazam; more vocal , concenrating better.

Is this just 'fall out'? seems very drastic to us. She is having the same amount of seizures that she had when she was on all 3 drugs 18months ago.

given the marked improvement in her general state we aren't very keen to reintroduce anything, but the seizures are relentless.

Any ideas?

Done.

Jessie x]]> Thu, 17 May 2012 13:24:42 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4478 Help Please 2 Hours To Eat Each Meal http://forum.matthewsfriends.org/index.php?showtopic=4172
Many thanks

Jane.]]> Thu, 17 May 2012 12:33:08 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4172 Lowering The Ratio http://forum.matthewsfriends.org/index.php?showtopic=4479
When lowering the ratio do you change all the meals at once or reduce the ratio of 1 or 2 meals at a time?

Sorry if its a stupid question , Seb's ketones are too high again, things are going bad and I have to do something FAST! We have reduced the ratio before but my brain is so scrambled I can't remember what we did.

thanks for any help,

Kylie]]> Thu, 17 May 2012 11:11:52 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4479 Preparing For Clonazepam Wean http://forum.matthewsfriends.org/index.php?showtopic=4415
Fairly new to MF, but hoping for some advice as feeling apprehensive about imminent Clonazepam wean.

Our background first...

Our daughter Ellie is nearly 2, with epilepsy and developmental delay. We have no diagnosis, but waiting to explore a few genetic areas (Dravet?, Glut1?, EFMR?)

AEDs have not worked for Ellie (seizures at their worst when trying various cocktails of drugs) but the diet has been brilliant! Recently seizures only seem to come with a trigger (temperature, illness, maybe photosensitivity)

We have successfully weaned Phenobarbital and Keppra, leaving just Clonazepam (0.5mg three times a day) For some reason I'm much more apprehensive about this one!

We're planning on taking it nice and slow, but only advice from Drs is 'over 3 months, slower towards the end'

Any thoughts or tips from people who have been there before?

Thanks,

Simon
]]> Thu, 17 May 2012 10:48:54 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4415 Where Do You Test Blood For Ketones? Fingers/toes/heels? http://forum.matthewsfriends.org/index.php?showtopic=4456
We are using a blood monitor to test Hugh's ketones and were told to do finger pricks only. I had gestational diabetes and had to test my blood at least twice a day when pregnant and found my finger tips became really sensitive. I'd hate Hugh to have that feeling too. (he can't tell me). A friend said she'd been told she could do heel pricks and use the toes as well. What does everyone else do and does it really matter where you get the blood from?

Thanks in advance

Emma xxx]]> Thu, 17 May 2012 08:36:36 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4456 Annelies http://forum.matthewsfriends.org/index.php?showtopic=3419 Also a picture of the lot of us.
Boys and Annelies are our children.

Happy New Year to all of you.

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]]> Thu, 17 May 2012 08:34:06 +0000 http://forum.matthewsfriends.org/index.php?showtopic=3419 Which Drinks Can I Use http://forum.matthewsfriends.org/index.php?showtopic=3930
I' am been told different things i can use ie no added suger drinks but watching the videos on this brill site i dont think i can use them esp apple and blackcurrent flavour as it is over 0.3 for every 100ml .Can anyone please tell me what drinks you use please Cole will not drink Diet Coke or drink tea as this makes him poorly the consultant said perhaps it is the caffine in the drinks.

At the mo we are have sugar free fruit shoots and Diet lemonade
Sorry to name drop with makes but Cole like a nice drink of juice but i dont know whick one to use

All the best angie xx]]> Thu, 17 May 2012 07:42:55 +0000 http://forum.matthewsfriends.org/index.php?showtopic=3930 How Do You Measure Keytones? http://forum.matthewsfriends.org/index.php?showtopic=4081
gill x]]> Thu, 17 May 2012 07:40:49 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4081 The Boy Is Doing Good !!! http://forum.matthewsfriends.org/index.php?showtopic=4465 Hi guys jake been on diet since beginning of January, slight difference in sezuire control but these past 9 days we have seen a much better control in sezuires, from average 60 absences a day( 150 EEG day late December ) around 8 a day and maybe a cluster of 6 to 8 on waking ( this is new since starting diet ) but I have a question I cannot pinpoint why some days are better than others ie some days nothing till 430 pm then all absences together then other days 8 spread out over the day no such pattern really, do u think I will ever find reason as to why, I thought it could be lots of stuff like amount of juice, how much sleep, time of meds etc, sorry for ramble lol x Wed, 16 May 2012 20:29:29 +0000 http://forum.matthewsfriends.org/index.php?showtopic=4465