Landau-Kleffner Syndrome Support Group

Hi Guys,

My name is Bec and I stumbled across this site as i was frantically trying to find a support group for LKS.

My daughter Taylor who turned 4 in April was diagnosed with LKS in June of this year and it has been very full on since then. Taylor started to loose her speech around August of last year. As you know being such a rare "disease" it is hard to find people to talk to who know what you are going through and i am now sitting here with a huge smile . I look forward to talking to you guys and hearing/shareing in LKS.

Thank you for joining, Bec. I recently found this site as well, and have been checking in regularly. As you probably noticed, there aren't a lot of us and so far there doesn't seem to be a lot of participation, but I'm hoping we can change that.

I'm sorry to hear about your daughter. It is such a tough condition. One of the things that has affected me most is that it is so unexpected and you never really know where the bottom is. My son starting having speech issues in fall 2009 so we put him into speech therapy in pre-school last year. This spring, however, we had the floor drop out from under us. He really regressed (hardly talking and poor comprehension) and was having uncontrolled seizures during the day.

We've tried the valium treatment which worked for a while, but is now ineffective. Adam is taking the pulse dose prednisone now (Friday nights-30 mgs and Saturday mornings-30 mgs). It seems to have helped some. Where I have noticed the biggest improvement is when he started on felbatol. The reason he started taking it was to try to get control of his daytime seizures, but his comprehension is much improved - so much so that I think he understands most of what we say to him now. The speech is still about where it was - one word at a time and not a lot of talking. We're all exhausted as the felbatol is causing sleep issues which we are experieincing head on.

Good luck with your daughter's treatment. If you find anything particularly helpful, please share. Have you noticed any other issues such as comprehension, or is it pretty much the talking only?

Take care.

Hi, how old is you son now? Taylor was 3 years & 2 months when we had noticed her speech was regressing. I at first thought it was a phase that she was going through, she had always been very bright and just seemed to cruise along at full speed and then she went up into a different room in daycare and it started, i thought she was put off by not being one of the big kids. We went through hearing tests, psychologist, speech therapy and they all thought that something was majorly wrong. At the first appointment with our Paedetrician he said that she was definitely not autistic (which was a relief at the time) and that it could be LKS, 3 months later LKS was confirmed.

We are on the lucky side whereby she doesn't have seizures, the Neurologist has said that she may have the nocturnal seizures but they are very minor as we have never noticed them, Tay used to wake up at odd times and he thinks that that may have been the cause.

Taylor has severe speech regression and loss of understanding/comprehension i would say that only slightly because she is still very good if we visualise, we have started using visual cards and recently learning Makaton (sign language). She does also have the staring spells (which is funny, i thought that was just her) Taylor was started on Prednisone infusions in June with her Neuro, she had 60mg per kg over 3 days and now she has them once a month with our local Paed 30mg per kg we have trouble getting her to take medicine from the start but she is now taking Ethosuximide 5 mls twice a day. We didn't have much change in her with the prednisone (only her sleeping & eating) so the Neuro started her on the ethosuximide about 3 weeks ago and we have since had "ain" (Rain), "ye" (bye) and Dad. We have weekly speech therapy but that is soooo hard because Tay gets very disinterested very quickly and likes everything & everyone to do what she wants to do. Since we started medications we have noticed a change in her sleeping, well lack of sleeping anyway. she won't go to sleep until around 10 11 (sometimes even 12) will wake up around 4 and then head back to sleep and wake up late. Routine is definitely not something that we can have in our house. I have been so lucky to have my parents close by as Paul (my partner) and i both work and my paretns are just a god send with there help i would have to stay at home which certainly would be a strain on the financial side of things. Taylor's daycare have been amazing also, they have received funding from the government to have a special teacher to sit with Taylor and help her along 2 days week. Sorry i have rambled it is crazy to actually have someone who understands what we are going through!

Hi Bec,

Your last line in your entry made me chuckle! It is so true, and definitely so needed. All of this stuff that we never even had heard of before is happening to our children and so little is known!! My son, Adam, is 5 1/2 now. He started having daytime seizures 2 years ago, which I thought was a horrible thing at the time. Now, I'd take just that if I could.

Last fall Adam starting having speech issues. Just like Taylor, he had been progressing normally and hadn't missed any development milestones. We got him into pre-school and then he met with a speech therapist 2x per week for 20 minutes each. But, it was at the end of his school year (this spring) when things really started to go downhill. His speech declined rapidly and he started having many really bad daytime seizures too. He is low comprehension and doesn't talk much (usually just one word at a time). We've fortunately got the seizures under control for now (but that could change in an instant). Now we are focusing on his treatment, how to get a good night's sleep and what he will need at school this fall when he enters kindergarten.

Did Taylor ever have a 24-hour EEG test? My understanding is that doing so (along with the language regression) is how they truly diagnose LKS. It might be worthwhile checking into because then you can know for sure and you can see how much of her nighttime sleep is spent having seizures. When Adam had his first 24-hour EEG, they learned he was seizing 90-95% of the time in non-REM sleep!!! If you were looking at him, you'd never notice the seizures, would never even dream so much of his sleep time is spent in this state.

When we found this out, Adam was started first on valium. He had to be admitted to the hospital for the first dose because they give him a very high dose and need to monitor his breathing. He did great! He was hooked up to an EEG all day and then over night. In the morning, they told us only 30-40% of his non-REM sleep was spent having seizures. So, we went home and continued the valium treatement, but on a lower dosage. Things were going great! His language had improved and there were really no comprehension issues.

Then, the valium stopped working. We noticed a dramatic decline in his speech and comprehension at the end of May. Adam started on predinose - it's called a pulse dose because he takes 30 mgs on Friday night and another 30 mgs on Saturday morning and then that's it until the next Friday night. It's helped some, but all in all, he has continued to decline.

In June the bad daytime seizures started and we began to add meds. Anything to get the seizures to stop. And Adam continues to decline. Actually, his neurologist thinks he is over-medicated. He walks around intoxicated and they believe that so many meds has actually starting causing sub-clinical (can't be seen on the outside by looking at the person) seizures during the day, too. We've started weaning him off of some of these meds now that we've found one that's working.

I haven't seen any noticeable changes - good or bad. He has good days and he has bad days. He may even have a good hour, but then 3 bad hours. But, mostly I'd say I haven't seen improvement.

The worst part is the not sleeping. I think I could handle all of this so much better if I could get a good night's rest. I haven't heard of ethosuxmide before. I'm going to have to look online to see what that's all about. Hang in there! It sounds like you have a really good support system, which is so needed and you are doing everything you can to help your little girl. Talk to you soon!

Hi bec

I have just come across this site and wanted to say hello. My son is 8 1/2 and he was diagnosed 3 years ago. We live in Australia and so far I have only come across 3 other parents of children with LKS so I have felt very alone for a long time. I hope I will get to chat to other parents and hopefully be of some support. I don't think anyone knows what we and our children go through unless you are living with LKS. Anyway if you would like to chat don't hesitate to contact me.

Maria.