My Daughter is four years old. The neurologist feels she may have Lennox-Gastaut. Does anyone have any experience with this disorder?

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Carolyn - posted on 04/09/2009

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I don't, we struggled with IS.

But a place to start is http://kidsepilepsy.com/

You can search by location and diagnosis, read their stories, and often there's contact info. I've met some awesome families thru there. Good luck!!!

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Holly - posted on 06/04/2009

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My daughter was diagnosed with Lennox-Gastaut when she was just 1 1/2 yrs old. The regression is temporary if you are able to get your childs seizures under control and make sure they have very intense therapy, Our daughter stopped progressing when she had her very first seizure... She still has no communication, but she has been released from Physical therapy because she is able to run, walk, hop, the things that a 5 year old is suppose to to. It was very hard hearing the diagnosis, but we have come to terms with it and take it in stride. When she was first diagnosed she was having over 200 seizures a day, to get the official diagnosis, they did a video eeg for 24 hours. They began a very aggressive round of ACTH injections (that we did at home), and within 6 wks of beginning that along with starting her on lamictal, she was seizure free. That lasted almost 2 years, she began to have them again, and again her doctor did the acth injections, She was almost seizure free after that round for 1 1/2 years. She is now on Lamictal, clonazepam, topamax sprinkles, and clonidine ( sleep pill). We take her to the Mayo Clinic in Rochester, MN. They are awesome, I recommend them to anyone that has a child with any kind of illness!!! It also wouldn't hurt to get a second opinion, if you are the least bit hesitant of the diagnosis!!! Any questions, just ask. my email is simpsholly@yahoo.com

Stefanie - posted on 04/28/2009

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Hey.. My son was just dx with LGS.. He is 4 also.. I have found a lot of help and support from people here on facebook.. If you would like to talk, then just message me and/or add me.. Stefanie

Joanne - posted on 04/21/2009

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my son jordan is 14 yrs old he has l-g he has so mant different types ov fits they cant get him under control he has to wear an helmet wen out side coz he has drop attacks if u would like a 1to1 with me then u can add me on facebook x

Sandi - posted on 04/11/2009

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Hi Ellen,



My son was diagnosed with Lennox Gastaut when he was 4.  While many of his symptoms were consistent with Lennox, he wasn't showing any signs of regression.  For some reason, I just didn't believe that it was and pushed hard to get to a different specialist for an extended eeg.  After 3 years of thinking it was - it turns out that he doesn't have Lennox -- although it is still considered one of the catastophic epilepsies.  I don't think we'll ever have a "name" for his disorder.



Through the internet, I have run into a few families whose children have Lennox-Gastaut.  Many swear by the Keto diet.



How is your daughter doing??  Any you??

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