sjs40
10-26-2003, 12:12 PM
This is a rare seizural disorder that only affects ones speech. Only children 4-7 yrs old have been diagnosed as having this and they seem, for the most part to grow out of it some time in adolesence.
My son was diagnosed when he was 5. One day he just could not get his words out. He has petit mal seizures (no convulsions) all the time without medication. The dr said its like when an adult cannot speak after having a stroke.
As far as I'm aware there have only been around 250 cases of this worldwide in the past 50 years.
Is there anyone familiar with this disorder?
(I also posted this on the Rare Disorders Board which doesn't seem to get as much traffic as this one)
Thanks.
My son was diagnosed when he was 5. One day he just could not get his words out. He has petit mal seizures (no convulsions) all the time without medication. The dr said its like when an adult cannot speak after having a stroke.
As far as I'm aware there have only been around 250 cases of this worldwide in the past 50 years.
Is there anyone familiar with this disorder?
(I also posted this on the Rare Disorders Board which doesn't seem to get as much traffic as this one)
Thanks.
Sponsor
robinrobin
10-26-2003, 12:14 PM
no i am not, but i hope u find out something ((()))
LisaGuthrie
10-27-2003, 02:46 PM
Hi SJS40,
I don't have personal knowlege of LKS, but, I do know what it is. I have a 22 mth old whos been seizing for a year now. At first it didn't effect his language. But, in April he started seizing several times per day and he lost all his words. He doesn't even say Momma and Dadee anymore. And no one can tell us why...
I've deleted my web site links on this. If memory serves me the UK tended to have more info on this disorder then any of the US websites I found.
Good luck to you in your search. God bless all our children.
...and you are more then welcome here! There are so many people who have been great about provide insite on what my lil man goes through.
Love and light,
Lisa and kids
I don't have personal knowlege of LKS, but, I do know what it is. I have a 22 mth old whos been seizing for a year now. At first it didn't effect his language. But, in April he started seizing several times per day and he lost all his words. He doesn't even say Momma and Dadee anymore. And no one can tell us why...
I've deleted my web site links on this. If memory serves me the UK tended to have more info on this disorder then any of the US websites I found.
Good luck to you in your search. God bless all our children.
...and you are more then welcome here! There are so many people who have been great about provide insite on what my lil man goes through.
Love and light,
Lisa and kids
sjs40
10-27-2003, 03:00 PM
Thank U for your posting.
My son actually just turned 9 and has been on Depakote and just weaned of of Prednisone which is a steroid. With his med he does talk pretty well.
Your little guy is very young, but maybe there is med for him too.
God Bless!
------------------
My son actually just turned 9 and has been on Depakote and just weaned of of Prednisone which is a steroid. With his med he does talk pretty well.
Your little guy is very young, but maybe there is med for him too.
God Bless!
------------------
HSMomof4
11-20-2003, 01:28 AM
My son has LKS and has had it for many years. He was misdiagnosed for several years because he started having the seizures (undiagnosed) at such a young age that his brain pushed the ability to speak to the right side (it should be on the left).
He had brain surgery 3 years ago for it. It needs to be AGRESSIVELY treated as soon as it is diagnosed. If you peds neuro isn't familiar with it FIND SOMEONE WHO IS! Sorry for the caps, but my kid is permanently brain damaged because of the idiots he was seeing for seven years.
Took the new neuro 15 minutes to diagnose what the other guy couldn't for years.
Nancy
He had brain surgery 3 years ago for it. It needs to be AGRESSIVELY treated as soon as it is diagnosed. If you peds neuro isn't familiar with it FIND SOMEONE WHO IS! Sorry for the caps, but my kid is permanently brain damaged because of the idiots he was seeing for seven years.
Took the new neuro 15 minutes to diagnose what the other guy couldn't for years.
Nancy
LisaGuthrie
11-21-2003, 12:59 PM
My son has LKS and has had it for many years. He was misdiagnosed for several years because he started having the seizures (undiagnosed) at such a young age that his brain pushed the ability to speak to the right side (it should be on the left).
He had brain surgery 3 years ago for it. It needs to be AGRESSIVELY treated as soon as it is diagnosed. If you peds neuro isn't familiar with it FIND SOMEONE WHO IS! Sorry for the caps, but my kid is permanently brain damaged because of the idiots he was seeing for seven years.
Took the new neuro 15 minutes to diagnose what the other guy couldn't for years.
Nancy
Hi Nancy,
I haven't "welcomed" :wave: you to the board yet, but see you've made yourself at home! Good to see!
How old was Trever when he started seizing. And how long did it take him to lose his words. I'm still kind of freaked about this one. At 11 and 12 mths Jake was my most advanced talker. And like I said above he went from only a few seizures a month at first to several a day for several months and that's when he lost his words - during the daily stuff.
Right now he is pushing 9 weeks without one. Lamictol has been wonderful for him. Jake receives PT, OT and Speech Therapy and the PT says that he's making such huge strides in his overall development and that we should give him another 12 weeks or so on language - that would be the norm anyway. That even normal babies have a pretty big set back when they start to walk.
In the past 8 weeks he's learned to walk, play with a ball (pick up, kick, push etc), he's learned over and under... ;) we lost him a couple weeks ago - and was rather paniced for a few minutes only to find him grinning from ear to ear under the dinning room table. He's also learned to stoop and stand from an upright position and he's really trying hard to master stairs as well...
Love and light
Lisa and kids
He had brain surgery 3 years ago for it. It needs to be AGRESSIVELY treated as soon as it is diagnosed. If you peds neuro isn't familiar with it FIND SOMEONE WHO IS! Sorry for the caps, but my kid is permanently brain damaged because of the idiots he was seeing for seven years.
Took the new neuro 15 minutes to diagnose what the other guy couldn't for years.
Nancy
Hi Nancy,
I haven't "welcomed" :wave: you to the board yet, but see you've made yourself at home! Good to see!
How old was Trever when he started seizing. And how long did it take him to lose his words. I'm still kind of freaked about this one. At 11 and 12 mths Jake was my most advanced talker. And like I said above he went from only a few seizures a month at first to several a day for several months and that's when he lost his words - during the daily stuff.
Right now he is pushing 9 weeks without one. Lamictol has been wonderful for him. Jake receives PT, OT and Speech Therapy and the PT says that he's making such huge strides in his overall development and that we should give him another 12 weeks or so on language - that would be the norm anyway. That even normal babies have a pretty big set back when they start to walk.
In the past 8 weeks he's learned to walk, play with a ball (pick up, kick, push etc), he's learned over and under... ;) we lost him a couple weeks ago - and was rather paniced for a few minutes only to find him grinning from ear to ear under the dinning room table. He's also learned to stoop and stand from an upright position and he's really trying hard to master stairs as well...
Love and light
Lisa and kids
HSMomof4
11-22-2003, 04:34 AM
Hi Nancy,
I haven't "welcomed" :wave: you to the board yet, but see you've made yourself at home! Good to see!
How old was Trever when he started seizing. And how long did it take him to lose his words. I'm still kind of freaked about this one. At 11 and 12 mths Jake was my most advanced talker. And like I said above he went from only a few seizures a month at first to several a day for several months and that's when he lost his words - during the daily stuff.
Right now he is pushing 9 weeks without one. Lamictol has been wonderful for him. Jake receives PT, OT and Speech Therapy and the PT says that he's making such huge strides in his overall development and that we should give him another 12 weeks or so on language - that would be the norm anyway. That even normal babies have a pretty big set back when they start to walk.
In the past 8 weeks he's learned to walk, play with a ball (pick up, kick, push etc), he's learned over and under... ;) we lost him a couple weeks ago - and was rather paniced for a few minutes only to find him grinning from ear to ear under the dinning room table. He's also learned to stoop and stand from an upright position and he's really trying hard to master stairs as well...
Love and light
Lisa and kids
Hi Lisa!
Glad to hear your son is doing so well on the Lamictal and with therapy.
Trevor had his first seizure at a little over 2 years of age then none (that we knew of) until 4 yrs of age. The earlier the start of seizures and the longer proper treatment is delayed, the more severe the long term damage is.
Feel free to e-mail me (off board) any time! NLesslie62@aol.***
Nancy
I haven't "welcomed" :wave: you to the board yet, but see you've made yourself at home! Good to see!
How old was Trever when he started seizing. And how long did it take him to lose his words. I'm still kind of freaked about this one. At 11 and 12 mths Jake was my most advanced talker. And like I said above he went from only a few seizures a month at first to several a day for several months and that's when he lost his words - during the daily stuff.
Right now he is pushing 9 weeks without one. Lamictol has been wonderful for him. Jake receives PT, OT and Speech Therapy and the PT says that he's making such huge strides in his overall development and that we should give him another 12 weeks or so on language - that would be the norm anyway. That even normal babies have a pretty big set back when they start to walk.
In the past 8 weeks he's learned to walk, play with a ball (pick up, kick, push etc), he's learned over and under... ;) we lost him a couple weeks ago - and was rather paniced for a few minutes only to find him grinning from ear to ear under the dinning room table. He's also learned to stoop and stand from an upright position and he's really trying hard to master stairs as well...
Love and light
Lisa and kids
Hi Lisa!
Glad to hear your son is doing so well on the Lamictal and with therapy.
Trevor had his first seizure at a little over 2 years of age then none (that we knew of) until 4 yrs of age. The earlier the start of seizures and the longer proper treatment is delayed, the more severe the long term damage is.
Feel free to e-mail me (off board) any time! NLesslie62@aol.***
Nancy