Lannox Gasteau

[YvonneE]

My grandson has been dealing with epilepsy for almost 2 years, is regressing and now believed to have Lannox Gasteau Syndrom. I understand there isn't a lot of info on this. Is anyone familiar with this? He is in hopes to enter a study at Dartmouth with a new drug, we're hoping for some success with the seizures. We feel that our options are running out, any help?
YvonneE

 

[Nakamova]

Hi YvonneE, sorry to hear that your grandson is struggling. You might find info by contacting these folks: http://www.lgsfoundation.org/

 

[YvonneE]

Thanks for the site, I'll read it tonight.

 

[Dutch mom]

Welcome Yvonne,

My 12-year old special needs son has Lennox Gastaut syndrome. He had his first seizures at age 1,5 and his epilepsy worsened very fast. LGS was diagnosed at age 3. His EEG showed 90-99% epileptic activity in the typical LGS slow wave pattern on the background. He suffered all types of seizures and had many seizures each day and night untill he was 5. We have tried over 10 medications without any succes, just many side effects.

At age 5 we started him on the classical ketogenic diet. We did not expect this diet to work but it did. It was a miracle, in the first week on the diet his seizures reduced significantly. After 6 months of finetuning the diet (not an easy thing to deal with) his EEG was improved >70% and he became seizure free for long periods. We managed to wean off all AEDs and benzo's.

He is on the ketogenic diet for over 7 years now. He is not 100% seizure free, I guess he never will be, as soon as he is ill or his blood ketosis is to low, we see seizures breaking through the diet. But those are only short incidental periods, we know how to manipilate his ketosis with the diet and when not he is not ill we don't see seizures as long as the diet maintains sufficient ketosis

The ketogenc diet had made THE difference for my son. He is and will be disabled but he is a happy boy now and doesn't suffer from constant seizures as he did before. The significant seizure reduction helped him to develop a little more instead of the retardation we saw before the diet.

Here you can read my son's story, I wrote this 5 years ago for Matthews Friends. http://site.matthewsfriends.org/index.php?page=joni-s-story

When you join the Matthews Friends Family Forum http://forum.matthewsfriends.org/index.php?app=core&module=global&section=register you can read about many more kids with LGS who found a treatment for their sezures in the ketogenic diet.
The diet is effective in about 50-60% of kids with LGS which is a far better chance than medication for this syndrome.

 

[Paorrin]

YvonneE there are more of us that you think. My daughter has LGS first seizure at 4 and has regressed sence now 11. I will not lie to you it is a very tough road but peole in these forums have a wealth of knowledge so may work for you some may not but i beleave knowledge is power!! Yahoo groups has a group for lennox gestaut syndrome that you can contact ppl with LGS but this forum has alot more people with seizures in it (even if not LGS). Someone here has tried every possible treatment you can search and find out pluses and minuses of each.
Last but not least you can use the padded room to vent. (and get huggs)

Robert father to abigail LGS, SBH,

 

[donnajane]

Hi, My almost 11month old son is having multiple different seizures a day, only a few seconds each thankfully. His development seems to be slowing or more like he has paused. Nureo said he's just content at the moment? At our last Nureo apt we were told it looks like he may be having Tonic Events, although at this stage EEG is clear and the Nureo went from telling us last appointment we should know a lot more by the time he is one to it will take a year and he may not even crawl until 16months. (My other kids were quite quick developing my 2 yr old walked at 9months and my 4 yr was speed crawling everywhere and standing by 8months although didn't walk until 13months) It seemed quite a turnaround from our Nureo but he still says he is "concerned but not alarmed" yet. After talking to several people both on this site and others I think the reason the Nureo has changed his timeline from 1yr to 2yrs before we know more is he has a small concern that my son may have lennox-gastaut syndrome, I am sure its only a tiny% of a chance but....... If you don't mind would you share with me your grandsons story of how his seizures developed and his development etc. I am also on a quest for answers some of which I know I may never get.
I hope you grandson gets all of the assistance he can and he is in my thoughts
Thankyou
Donnajane.

 

[YvonneE]

Donnajane, Jacob seemed to be developing normaly although he had nights where he would cry uncontrolably when he was really young. It wasn't until about 22 months that his mom noticed him shaking and saying no, no during these times. Her peditrician said just watch him, nothing to worry about. When he was 26 months he had a bad seizure, passed out and that is when he was taken to the hospital and epliepsy was first mentioned. He had been treated at Dartmuth since then, on 4 or 5 different meds, nothing has helped. The seizures have become worse, the EEG is very abnormal,active all the time and he has regressed. He does not talk, what little he did say is mostly gone. I'm sure much of his acting out is from the meds, but he is constant motion. They have been through many sleepless nights, they went through a time when biting was a real problem. His depth preception isn't good and we have to be careful of stairs. I don't know if this helps you, if you have more specific questions please feel free to ask. I still don't know all i'd like to on this and I'm still hunting for answers as well. good luck I know we all feel so helpless.

 

[donnajane]

Thankyou so much for sharing. I have only started on this road around 3 1/2 months ago and its a constant learning experience for us all. Originally we were told by my sons GP his shaking was just him looking for attention, he was just over 7months. Since then he has developed several different forms of "events/seizures" luckily only a few seconds in length, although he can have many a day. He has been admitted to hospital twice once via ED with a large cluster of seizures at night that seemed to hardly stop before starting and left him screaming in between. At the moment we feel his development has slowed or almost come to a pause but thankfully he is usually quite content and happy. We have been told only time will tell as to what will happen so at the moment every moment we spend with our son is even more precious we are hoping he "grows" out of his "seizures/events" but we have told this may or may not happen.
Thankyou again for sharing I really appreciate it as I am learning so much from everyone's posts.
Donnajane