My Five Year Old has Lennox Gastaut Syndrome

Submitted by Frankys mom on Sat, 03/21/2009 - 22:18.
in

 

Hi my name is Ann Harrison, my son Frankie is five and has Lennox-gastaut syndrome. He was diagnoised with this at nine months of age. He remains medication and therapy resistant. We have tried every medication out their with no luck. His eegs remain the same. He has abnormal activity every 7 seconds and has 30 grand mals a day and 40 myclonical a day according to his eeg. We see 25 to 30 seizures a day.

Right now we are doing a modified atkins diet with no results. He has been on the diet for 8 months. His keytones are on the high end. He receives homebound care due to seizure activity. He sleeps about 17 to 18 hours a day with the longest time asleep a day at once is 5 to 6 hours. He wears a diaper and is non verbal.

Before the seizures started he was my earliest talker out of my 5 children. I still cant believe he lost it all. He is 100% dependent and is happiest being held and talked to. He seems to only recognize mom and when the therapist comes, he lasts about 10 minutes but keeps his eyes on me. He is very sweet. I have a facebook page for support. I was truly happy to find this sight. Great info here.

Ann Harrison


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Arlene Martell's picture

Hi Ann

Submitted by Arlene Martell on Tue, 03/24/2009 - 09:09.

Thank you so much for telling us about Frankie. I can feel your sadness for the whole situation and I hope I am able to offer you some suggestions that may help.  It is so hard to watch your child lose abilities they had before and the same thing happened to my son as well.

I think you are on the right track with the modified atkins, but may need to take it a step further and get on the full ketogenic diet. The diet seems to work well for kids with Lennox gastaut, which my son also had. I was told his prognosis was continued seizures and progressive mental retardation. Within 3 days on the diet, things turned around and he became completely seizure free.

I know the modified atkins is similar - but it is not the same.  If you have not done so already, can I suggest two things?

  1. Click on "Podcasts" and listen to two interviews I did. One with Jim Abrahams from the Charlie Foundation and one with Kim Duprey who has a little boy on the diet and she tells her experience.
  2. I would recommend getting this book "The Ketogentic Diet" - a Treatment for children and others with epilepsy". It is full of great information.

You sound like an amazing mom. Keep your chin up and let us know what changes you make.

Warmly,

Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com