Landau Kleffner

[Anonymous]

Hi -- my child has been diagnosed with Landau Kleffner. Has anyone experienced effective treatments for this, either medical or theraputic?

[Anonymous]

i suspect someone I know has a child with this. How old was your child when he showed signs.

[Anonymous]

I've taught a couple kids with this diagnosis.

They both underwent medical treatment with massive doses of steroids, which unfortunately had lots of side effects, and in one case anticonvulsants. Both kids also benefited from intensive speech therapy, and special education. One child also did ABA.

From my completely non-medical perspective, there wasn't an observable improvement from the steroid burst. I can't really comment on the anticonvulsants because the child was on them before, during and after being in my class so I have nothing to compare with. Both kids seemed to learn and benefit a lot from specialized instruction, speech therapy, and ABA, but I'd say that growth was similar to what you'd see with a child with another disability to impacted communication, such as MERLD, autism, or aphasia. That is, they learned and grew and benefited, but they weren't "cured". The improvement was incremental and came through hard work on the part of the child, and the adults working with the child including the parents.

[Anonymous]

OP,

Have you considered a clinical trial?
https://rarediseases.info.nih.gov/gard/6855/landau-kleffner-syndrome/resources/6

We have a friend whose kid has a different but rare disorder and the NIH trial was a really good experience for them.

[Anonymous]

Thank you PPs. I did check out that study link but it appears it was closed Dec 13. I may contact NIH anyway.

We did have a very significant language improvement with five weeks of oral steroids. Four years of traditional interventions for speech disorders have been less effective, and in fact, our child has gotten worse despite a ton of therapy. However, my child is also diagnosed with PANDAS, so there could be some inflammation issues impact is progress.

[Anonymous]

typo above -- I should have said impacting his progress

[Anonymous]

I would try NIH in any case. There also may be a similar trial that they could point you to if their recruitment is truly closed.

[Anonymous]

I met another mom whose son has ASD resulting from LK who said that steroids have been one of the most significant interventions for him. Since they couldn't obviously maintain the steroids, he is now getting IVIG, but I sensed from talking to her that it wasn't as effective as the steroids. Jenny McCarty's son was found to have LK. He had very obvious seizures and was recovered with biomedical interventions and anticonvulsant therapies. Many of these kids have a positive Anne Connolly test for brain inflammation, suggesting that any approach to combat the inflammation could be beneficial.

[Anonymous]

You don't "get autism" from Landau Kleffner. The two can appear similar and so sometimes LK is mistaken for autism:
http://www.ninds.nih.gov/disorders/landaukleffnersyndrome/landaukleffnersyndrome.htm

[Anonymous]

2218 --Your post is what I was looking for! My child also had a very positive reaction to steroids. We are trying to get IVIG but are facing some insurance issues.

[Anonymous]

Anonymous wrote:You don't "get autism" from Landau Kleffner. The two can appear similar and so sometimes LK is mistaken for autism:
http://www.ninds.nih.gov/disorders/landaukleffnersyndrome/landaukleffnersyndrome.htm

You are implying that autism is a stand alone diagnosis. There is no biomarker to definitely diagnose autism. In reality it is only a disorder, a symptom of underlying medical issues that is characterized by three criteria (social, communication disorder, and repetitive behaviors) that can result from a number of different causes. For example, people with Rhett syndrome or Fragile X syndrome can have autism, and people with LK or PANDAS can have autism based on the three characteristics used to define the disorder. It's important to clarify this since any kid with an ASD Dx should be evaluated until all known potential causes (genetic, seizures, viruses, metal toxicity, etc) are ruled out. Jenny McCarthy's son was famously recovered from his autism by treating his underlying seizures from LK. The she was criticized for claiming to cure a child who never had autism in the first place. Many other ASD kids may be having subclinical seizure activity that goes undiagnosed because very few medical doctors are educated enough about autism to recommend testing. Most are happy to continue thinking that autism is a mysterious psychological disorder and that genetic epidemics are possible.

[Anonymous]

Anonymous wrote:

Anonymous wrote:You don't "get autism" from Landau Kleffner. The two can appear similar and so sometimes LK is mistaken for autism:
http://www.ninds.nih.gov/disorders/landaukleffnersyndrome/landaukleffnersyndrome.htm

You are implying that autism is a stand alone diagnosis. There is no biomarker to definitely diagnose autism. In reality it is only a disorder, a symptom of underlying medical issues that is characterized by three criteria (social, communication disorder, and repetitive behaviors) that can result from a number of different causes. For example, people with Rhett syndrome or Fragile X syndrome can have autism, and people with LK or PANDAS can have autism based on the three characteristics used to define the disorder. It's important to clarify this since any kid with an ASD Dx should be evaluated until all known potential causes (genetic, seizures, viruses, metal toxicity, etc) are ruled out. Jenny McCarthy's son was famously recovered from his autism by treating his underlying seizures from LK. The she was criticized for claiming to cure a child who never had autism in the first place. Many other ASD kids may be having subclinical seizure activity that goes undiagnosed because very few medical doctors are educated enough about autism to recommend testing. Most are happy to continue thinking that autism is a mysterious psychological disorder and that genetic epidemics are possible.

No, I'm saying that one doesn't cause the other. You can have both.

Jenny McCarthy's son never had autism and never "recovered" from it b/c he actually has Landau Kleffner. She is criticized b/c she told people not to get vaccines and thus we have more deaths from preventable diseases.

http://www.jennymccarthybodycount.com/Anti-Vaccine_Body_Count/Home.html

So please take your crazy trolling in defense of Jenny McCarthy some place else. This forum is to discuss special needs in an intelligent way.

[Anonymous]

Anonymous wrote:2218 --Your post is what I was looking for! My child also had a very positive reaction to steroids. We are trying to get IVIG but are facing some insurance issues.

Please keep us posted with your child's progress. I am interested in trying a short course of steroids for my own child because she has markers of brain inflammation. But first we are going to complete the 24 hr EEG because the steroids could mask potential subclinical abnormal brain waves.

I'm kind of leery of IVIG myself being that it's blood product. Based on my initial reading, I'd almost prefer to repeat a short course of steroids. I've read other accounts from parents who have repeated steroids with very good success. In once case, the second course nearly recovered the kid. Have you see many negative side effects from steroids?

Coincidently, I had a phone consult with my child's autism doctor yesterday and he mentioned an interesting patient who was totally no-verbal a year ago. After a short course of steroids, that boy was talking at an age-matched NT level and was fully caught up and integrated. Clearly, this was a stand out case, but it showcases the fact that our kids can get better with medical intervention.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't "get autism" from Landau Kleffner. The two can appear similar and so sometimes LK is mistaken for autism:
http://www.ninds.nih.gov/disorders/landaukleffnersyndrome/landaukleffnersyndrome.htm

You are implying that autism is a stand alone diagnosis. There is no biomarker to definitely diagnose autism. In reality it is only a disorder, a symptom of underlying medical issues that is characterized by three criteria (social, communication disorder, and repetitive behaviors) that can result from a number of different causes. For example, people with Rhett syndrome or Fragile X syndrome can have autism, and people with LK or PANDAS can have autism based on the three characteristics used to define the disorder. It's important to clarify this since any kid with an ASD Dx should be evaluated until all known potential causes (genetic, seizures, viruses, metal toxicity, etc) are ruled out. Jenny McCarthy's son was famously recovered from his autism by treating his underlying seizures from LK. The she was criticized for claiming to cure a child who never had autism in the first place. Many other ASD kids may be having subclinical seizure activity that goes undiagnosed because very few medical doctors are educated enough about autism to recommend testing. Most are happy to continue thinking that autism is a mysterious psychological disorder and that genetic epidemics are possible.

No, I'm saying that one doesn't cause the other. You can have both.

Jenny McCarthy's son never had autism and never "recovered" from it b/c he actually has Landau Kleffner. She is criticized b/c she told people not to get vaccines and thus we have more deaths from preventable diseases.

http://www.jennymccarthybodycount.com/Anti-Vaccine_Body_Count/Home.html

So please take your crazy trolling in defense of Jenny McCarthy some place else. This forum is to discuss special needs in an intelligent way.

If you re-read my post carefully I have not made any claim to defend Jenny McCarthy, nor have I made any reference to the vaccine controversy. I do not appreciate you calling me a troll. As for your implication that I am not discussing special needs in an intelligent way, I would suggest you take your own advice to heart.

[Anonymous]

<<coincidently, I had a phone consult with my child's autism doctor yesterday and he mentioned an interesting patient who was totally no-verbal a year ago. After a short course of steroids, that boy was talking at an age-matched NT level and was fully caught up and integrated. Clearly, this was a stand out case, but it showcases the fact that our kids can get better with medical intervention. >>


PP who posted this -- i am the OP. Interestingly, my child had one IVIG months and months ago. In the room with my child was a boy who apparantly was entirley non-verbal, full-on autism dx in an autism classroom who became completely verbal after a course of steroids (so the mother says).

My child did not have any negative side effects from oral steroids other than puffy face/weight gain. No crankiness, which is what i feared. I'll see how iv steroids go.