To all affected by Lennox-Gastaut Syndrome

[LGS Foundation]

Hi Everyone,

I am putting together a short informational video of kids and young adults with Lennox-Gastaut Syndrome. It will also be included in the documentary that we are producing.

I am looking for everyone who has a loved one with Lennox-Gastaut Syndrome to submit photographs and videos of them. We are looking for the following criteria:

1. pictures of them during EEGs
2. pictures of them wearing helmets
3. videos of them having seizures
4. videos of doctors visits
5. any other video or picture which documents their struggles.

Please send all materials in the following manner:
1. Photos can be emailed [PM for address]
2. Videos- please mail all videos to me at the following address:
Christina SanInocencio
C/O Thaler Films Inc
275 Marcus Blvd Suite M
Hauppauge NY 11788
Any format (VHS, DVD, mini-DV, SuperVHS, Beta, DV Cam, High 8, etc) are fine.
3. You may also upload digital videos via youtube or photobucket and send me the link. (not preferred due to loss of picture quality, but they will suffice). You may also FTP them to me if you'd like. Please contact me for an FTP address.

All materials will be promptly returned.

Please let me know if you have any questions. These materials will help me tremendsouly in telling an effective story about Lennox-Gastaut Syndrome.

Thanks,
Christina SanInocencio
Lennox-Gastaut Syndrome Foundation

[Bernard]

Just FYI to everyone, I invited LGSF to post this announcement here. It's a non-profit project.

LGSF, you should explain what the documentary will be used for or how it will be distributed...

[stilldancing_98]

That is what the docs thought my son Alex had. I read up on it. Isn't there a difference in severity? There has been some regression. In the early years with speech. Slow to talk and then had myoclonic clusters and was not talking at all. "slightly mentally retarded, kidney"Now the epileptologist says no. I see seizures but no regression.What do you think?

[LGS Foundation]

Unfortunately, yes, there is a difference in severity between epilepsy and Lennox-Gastaut Syndrome. Lennox-Gastaut Syndrome is often accompanied by multiple types of seizures, more frequency of these seizures, and in almost all cases, is consistent with mental retardation and regression. Other variables include behavioral problems, psychological issues, etc. Most of those diagnosed with Lennox-Gastaut Syndrome are resistant to medication, the ketogenic diet, or the VNS. And there are also studies being done which indicate that there may be a link between Lennox-Gastaut Syndrome and autism.

From what you've indicated above, your son's symptoms seem like those of others with Lennox-Gastaut Syndrome. I'm not exactly sure why the neurologist ruled it out, but I think it might have to do with the fact that your son is not regressing (continually). There's also another severe type of epilepsy called DOOSE syndrome, which is also a severe type of epilepsy and has similar traits to Lennox-Gastaut Syndrome.

I hope that Alex is well and please let me know if you have any other questions about Lennox-Gastaut Syndrome!

[LGS Foundation]

Thanks Bernard.

The photos and videos I am requesting are actually going to be used for a short "informational video/ montage" for primarily our website. It will run about 3-4 minutes long with facts, music, videos, and pictures weaved in. However, I am also in pre-production for a much larger project, which will be a documentary about Lennox-Gastaut Syndrome and epilepsy!! I am so excited about this!

My main profession is a television producer and I started the Lennox-Gastaut Syndrome Foundation last year. I have always wanted to produce a documentary about the disorder, but have never really had the time or resources to do so... until now!

I am currently researching and writing the script which will be followed by a few months of shooting. As of now, the means of distribution will be straight to DVD and some film festivals. What I would love from the community is some feedback about what you'd like to see in the documentary!

Please don't hesitate to write me and let me know your thoughts. There is no better source of inspiration than from those who know it best... you!

Thanks everyone.

[stilldancing_98]

Alex does have behavior problems. Terribly.He is 10 and behavior showed up about 4 and 5. Throwing hitting. Cursing. He has been tested for Aspergers. nope. Just recently. He is on Tenex for blood pressure the doc's said that he had explosive disorder ?Bad Bad Temper. Thank you so much.

[brain]

I'm a strong supporter of the LGSF.
And by all means please assist them
if it applies to you in any way possible.

[LGS Foundation]

Hey everyone,

We just recently finished an informational video on Lennox-Gastaut Syndrome... To view it, please go to our website http://www.lgsfoundation.org, and click on the link for videos.

Best Regards,
The Lennox-Gastaut Syndrome Foundation

[brain]

I saw the videos and I recommend
it, in fact, I saw their entire site and
it's been totally revamped! You should
go to it! Click on the Banner below
and go directly to the site:





Lennox-Gastaut Syndrome is also on my Head Storms
Resource Center as well

[Bernard]

Wow, that was quick!

[Nanny Pat]

Hi Christina
How great that someone is actually trying to highlight the plight of all Lennox-Gastaut Syndrome sufferers. I thank you for that. I have a beautiful grandson who will be 5 on Sunday. He was diagnosed with Lennox-Gastaut Syndrome about 18 months ago. Until the first seizure hit he was and still is to a degree a very bright toddler. He could hold a full conversation at 2 years. Could sing songs, count, know shapes, Parts of the body (mums a paramedic). We had a hell of a year with the dreaded drop seizures and lots of other types besides. Lots of scars, stitches, bruises, smashed teeth, nose injuries.

Ben now takes 3 meds. Epilim, Clobizam and Keppra and I have to say they they have kept the seizures at bay for the past 9 months, apart from the odd blip. His behavior is however erratic and he does get home from school a fair bit, today for hitting a teacher! The strange thing is that although we see the changes in this beautiful child he is still as bright as ever! He can sing all the songs from Mary Poppins and Annie, Knows sponge Bob word for word. Has a fantastic vocabularic range that would blow you away, Can describe in detail the recipe of the cake he has just helped mummy make but struggles to write his name. I have forwarded this site to his mum Sal who is an absolute marvel. She never stops teaching him new things. I read about the outcome and I just can't believe that this smart little cookie can have this terrible complaint. I have also read about Doose and wonder if there has been a misdiagnosis. We saw Bens doctor at his school today and have asked for another EEG. She is sure he has Lennox-Gastaut Syndrome so we will see.

I do have some before and after shots of Ben but am not sure how to link them right now. Should I "Go advanced"

[RobinN]

Nanny Pat - you will have to send them to her directly as your restrictions being a new member won't allow you to post [images] or link anything for a while.

You could private message her and see if you can send them via email.
They seem to already have finished a video, so I am not sure if they are still in need of images. Click on their screen name and you will get a pop up that lists private message.
Write your message like you would a post and click send.

Welcome! I hope you find CWE a comfortable place to find out more about your grandson's disorder.

[LGS Foundation]

Hi Pat,

Thanks for connecting with us. Your grandson sounds wonderful, and I hope his seizures continue to remain controlled with the meds he is on.

We are still accepting photos, videos, and stories of those who have Lennox-Gastaut Syndrome. Although we have finished the short informational video, we are still looking for materials for our website and a future documentary we are developing. We would love for you to submit any of those materials that you have. Please contact me [via PM] and I can give you more information about our organization and how you can send the photos.

Thanks so much. And I hope you and your family are having a great day.

Regards,
Christina

[Bernard]

If you click on Christina's user name, you will get a menu with an option to send her a private message (PM). She will get an email notification that she has private messages pending.

It's forum policy not to publish email addresses in the public forum (you never know who is lurking). You can share them as you like via PM.

[momwantstohelp]

my son corey age 5 had his 1st seisure at age 3, march 07. he had a head injury and doctor said mri was normal. after 1st seisure, he started having atonic seisures, tonic seisures and drop seisures. doctor said that it looked as if he had Lennox-Gastaut Syndrome. he was on phenabarbital, kepra, valium, topamax, clonazapam, lamictil, and zonagram. drop seisures kept getting worse, sometimes corey would have as many as 100 drop seisures a day. at night while sleeping he would have tonic seisures. all of the medicines were not working, and new eeg showed that he was having seisure activity even when he was not having seisures. corey was having trouble talking, potty training stopped, play time was always interupted by many drop seisures, he stopped being able to feed himself. then the week before Christmas 07, Corey had an ear infection, I took him to his ENT and the ENT put him on steroids to help the ear infection. while on the steroids Corey's seisures stopped. After a week of steroid treatment, Corey started having seisures again. I called his neurologist and told him about steroids helping his seisures. Then in Feb 08, doctor put Corey on 1 month steroid treatment. Feb 28, 08 was Corey's last dose of steroids and also the day of his last seisure. Corey has been seisure free for 9 monhs, and doctor lowered medicine. Corey only takes lamictil and zonagram. we hope he continues to be seisure free. I wanted to write this letter to see if this information could help anyone.
ths,.

[Bernard]

Hi mwth, welcome to the forum.

... Then in Feb 08, doctor put Corey on 1 month steroid treatment. ... Corey has been seisure free for 9 monhs, and doctor lowered medicine.

That's awesome news!

Can you tell us what the steroid treatment involved (ie. which steroid(s))?

[stilldancing_98]

This is so wierd, Alex is going to Children's Hospital Jan.5th to see and ENT for ear and sinus infections.Right before that he see's his epileptologist.He is not a pediatric epileptologist.I am moving him back to Childrens.The Doc there was such a boob. My Dr. is Alex's Dr. Anyway I read all the info on Lennox-Gastaut Syndrome. There were 2 kids that looked just like Alex. One baby and one older child.Wow.

[LGS Foundation]

That's great, mwth! I would love more information on the steroid treatment. thanks!

[stilldancing_98]

Thank you! I think I am going to cry!

[momwantstohelp]

That's great, mwth! I would love more information on the steroid treatment. thanks!

his ent used steroid prednisolone one week treatment to treat his ear infection. this was in dec 07. while on this one week treatment of steroids, my sons drop seisures went from 100 a day to none a day. he started playing and talking and feeding himself and laughing again. I called his neurologist and told him about this improvement. neurologist said to call him when my sons seisures to worsen. my son was seisure free for about 3 weeks. then he started having drop and tonic and atonic seisures again. i called the neurologist back and he put my son on steroid prednisolone for one month. this was feb 01,08. his last steroid treatment was feb 28, 08. this was also the last day that my son had a seisure. his neurologist said that if my son has any more seisures that he will try the the steroids again. i hope this info helps anyone.