I just joined this site, so I know this response is late. My son was thought to have landau-kleffner syndrome after his eeg revealed continuous spike and waves. However, after a series of tests which included memory, cognitive functioning, language skills and so forth, he was not diagnosed with it. With lks there is language regression and autistic-like behavior. There are many good web sites on this syndrome if you haven't looked at them already. Hope this helps.

Thanks for replying to my article, my daughter has now been diagnosed with this condition, however my local hospital won't treat her, I have now had to inform the papers of this, so they can get the health service to look at it. Did your son have a 24 hour eeg which involves him being asleep? I wasn't able to get this test in wales, so we paid private and it showed abnormality in the sleep period and normal while she was awake. Where are you living? I have done extensive research on this, including case studies from the library. It can be cured!!! My daughter's story was in the evening post last night, can you obtain this, if so have a read, because there is more to come, in view of the fact they are not willing to treat her, the doctors have given me no option but to print this. And this mimics autism, I do believe that my daughter is not the only one that could have this, so how many children are not getting treatment?

Lees

I'm so sorry to hear of the lack of cooperation from your doctors. I live in the us, in texas and know of several excellent epilepsy clinics and institutions that could help you here, but don't know if that is even a possibility for you. The cleveland clinic in ohio is the first I would recommend.



As for my son, he has had several eegs, all which include a sleep stage. When they thought he had lks, his spike and wave pattern was near continuous, particularly during sleep. However, he had no loss of language skills or anything that would indicate lks other than the abnormal eeg. He's had three-day stays in the epilepsy unit as well with continuous eeg and video monitoring. Based on the fact he remained verbally on target for his age, as well as his other functioning skills, lks was ruled out.

Is there a web site you could point me to that might have the article you're referring to? I would like to show this to our neuro here and see if he can offer any suggestions. My husband is in contact with several key people at baylor medical center here, another great medical facility, and I will have him ask as well. Please keep me posted. I would love to help in any way that I can.

Hi katiedee

the website to view my daughters article is thisissouthwales.Co.Uk, the website for lks is folks, however, I got my information from typing in lks(v) and all my child's symptoms, into a search engine, what has your son been diagnosed with? Because lks can mimic other conditions such as pdd and aspergers. It would be useless me explainig these conditions as you are the child's mum and you would indentify with the presentation of this, as you know him best, you might surprise yourself!! I would recommend a book for you to read, be open minded, because as you read it, you won't be able to put it down, I couldn't, give it a go, it will cost you £4.99, it is called crystal children by author doreen virtue, fabulous!!!!! Please keep in touch, I would like to hear from you, maybe we can tell each other the weird an bizarre excuses for non treatment of syndromes or lack of knowledge from doctors, you were very lucky to have your son tested for three days on a video telemetry, it cost me £2,500 for 24 hours and in the nhs hospital it was only done for an hour and ten minutes and then they couldn't get it right, they said it was normal.

Here's to making a difference to all children!!!
E-mail me soon, hope you enjoy the book!!!

To answer your question, my son was diagnosed with epilepsy and tourettes. We have seen many seizures that are the classic complex partial ones and his abnormal eegs show that he does have seizure tendencies. Having said that, a person can have a normal eeg, but yet still have epilepsy. Initially, the first neuro thought my son was just having tics and ignored the abnormal eeg. We sought a second opinion and that neuro did the 3-day monitoring and at the end he said that my son was havng hundreds of seizures a day, based on the eeg. Later on we saw a third neuro (due to insurance change) and she did inpatient monitoring as well and the only difference of opinion was on the kind of seizures she thought he was having. As time went on, the eeg got worse to where they thought he had lks, but he himself had not regressed in any manner. I'm very familiar with aspergers as he does show some of the characteristics of it, but more so my oldest son fits the profile as everything described in aspergers describes my oldest son.

It is very frustrating to be in your situation with no help available. We've dealt with two neuros who wouldn't listen to our concerns, but that is another story for another day - a very long one. The neuro we have now is a blessing as he did listen to us and my son has been seizure-free for two years now, which is why he's being weaned off his medication at the moment. We will see what happens after that. We've weaned him before, but the seizures started up soon afterwards. We're cautiously optimistic now. I will look up that article you referred to and send it to the neuro we use now to see what feedback he can give us. Maybe he knows of something or someone that can help you in your area as I know traveling out of the country would be most difficult (it would be for me!). I'll keep you posted and please keep in touch.

Hi katiedee

i am so sorry to hear that both your children have problems, this must be a tremendous strain on your life, I find it very hard to fully enjoy my daughter, as it is 50% observation and 50% enjoyment, the resaon I feel this is because doctors don't listen and I have to monitor deterioration. You are correct about the eeg, you can have fits, with a normal eeg.

There are three presentations of lks,

1 acute loss of language,sometimes in association with encephalophathy illness and or seizures, with good recovery.

2 long slow deterioration of language, which may be unresponsive to antiepileptic drugs, and moderate or poor recovery

3 variable onset during which there may be several episodes of language fluctuation which, if responsive to antiepeleptic drugs, may lead to good recovery

how long after the seizures did your son recieve antiepileptic drugs?

Has your son had an mri scan to check the map of the brain?

Do you know which part of the brain has the electrical activity?

The reason I did all this research was, the doctors weren't making sense and kept contradicting themselves over and over again.

It must be hard work!! Looking after your boys, I have only georgia and it this proves difficult, I know you love them, but you would probably do anything to get them cured, the scientist can make babies for childless couples, but not enough research is done into the cause of epilepsy, it is the funding (money speaks volumes). I am pleased to hear, you are weaning your son of medication, I will probably need a few tips from you sooner rather than later, I will pray for him. Well, have to go now, I am going to my local supermarket to collect signatures in disagreement with the hospital for not treating georgia's condition, this should help georgia get her test and treatment. The newspaper reporter for georgia's story is the mayoress of swansea, so I do have her in my corner and also the mayor, this gives me great support and encouragement, they are running a follow up story next week, also itn news have been interested in georgia's story. Give your boys a kiss from me. Speak soon ( keep in touch)

leissa

Hi:

to answer some of your questions, my son was put on medication right away as soon as the diagnosis of epilepsy was made. The eeg has changed over the years and initially showed the abnormality starting in the occipital lobe. Later eegs showed spike and waves all over, or generalized, although he's had only complex partial seizures. The events present themselves as starting with a funny feeling in his stomach, look of fear or looking lost, mouth chewing and swallowing, staring and not able to respond, sometimes drooling, sometimes making odd movements (reaching and grabbing the air, etc...) a then after about a couple of minutes he comes out of it and goes to sleep. So, he's always been treated for generalized seizures, rather than partial ones because of the eeg. His last eeg done two weeks ago showed a marked improvement and only sporadic sharp waves during sleep. His neuro felt since he'd been seizure free for two years that we could wean him off the meds and see how he does. We don't know if the eeg improved because he's outgrowing the seizures, or if the medication is doing such a good job. Two years ago we were told basically the same thing and eight weeks after he'd been weaned he had 13 seizures in one day, thus ending up in the emergency room for intervention. As far as his mris go, they look okay and only indicated some "normal variations", but i've always questioned how normal they were.

My oldest son is 21, and he's come a long way since adolescence. He's got a sharp mind and near genius iq, but sadly lacks social skills. I have two older daughters as well and neither one of them have exhibited any inappropriate social skills or signs of seizures. It's funny how different the boys are. But I don't worry because I know god is helping me to take good care of them.

I've tried several times to go to the web site to read your daughter's article, but I keep getting an error message saying it's unavailable. I don't know if the site is down temporarily or what, but I am anxious to read about her. What medication is she currently on? When did you notice her language regression? Exactly what are the doctors in disagreement over?

I hope all goes well and you got the signatures you needed at the supermarket. Keep in touch!

Hi katiedee

only a short reply I am afraid, as I am absolutely exhausted! I collected 316 signatures disagreeing with the decision not to treat georgia's syndrome in my local hospital, the doctors are saying there are possible side effects to the treatment, even though it is documented in medical reports that this has cured children, there are side effects with everything, I should have been given the choice to decide, they wouldn't have been able to treat her with drugs if I weren't willing. As for girls being ok, it is a fact that most syndromes are mail dominant, it would be worth trying to find out what parts are normal in your son's mri and what aren't, if anything would be able to understand. Will pray for you, have to go now, falling asleep. E-mail you soon

leissa