Patient Comments: Landau-Kleffner Syndrome - Outcome

Question:

Please describe your experience with Landau-Kleffner syndrome, including the outcome. Submit Your Comment

Comment from: rmart620, 25-34 Male (Caregiver) Published: February 13

My son was diagnosed with Landau-Kleffner syndrome (LKS) in 1995. Extremely rare. I saw a program on it and inquired. History is normal development until last DPT vaccine (age 2) when he had a bad reaction (high fever, high pitched screaming and tonic seizures). Continual ear infections for 1 year. I thought his speech (and developmental regression) was due to that but his speech never came back. From normal 2 year old he became a screaming, head banging, nonverbal child with regression. He was diagnosed with autism in 1988 and LKS in 1995. Prescription steroids and IVIG helped some, but regressed when stopped. Now 35, he is in a group home.

Comment from: Patti, 25-34 Female (Caregiver) Published: December 14

It’s been frustrating having a child with a rare disorder like Landau-Kleffner syndrome (LKS). No one seems to care about finding a reason or cure. My child’s seizure activity went mostly unnoticed aside from occasional absences, so I can only imagine what some of these other LKS children are going through. In her case, treating her as if she were “deaf” was the route we took. Learning cued speech helped her speech immensely. She has struggled with depression for many years.

Comment from: mingska, 3-6 Male (Caregiver) Published: November 19

Our little boy has been on the Landau-Kleffner syndrome (LKS) journey since January 2013. He had 3 regressions in 6 months. The last regression last July left him unable to speak, walk, swallow food, and sleep. Midday sleep has been the only thing that has kept us regression free. It's now 16 months later. He is speaking a lot better now. The maximum words in a sentence at last count was 18 words! Still he has behavioral problems and ADHD presentation. He also drools quite a lot. He attends school until 11.40 am each day but loves his school. He has made lots of friends. We have a long road ahead. We have a fantastic speech therapist and are also engaged in a neuroscience program, 'institute of functional neuroscience'. Our son is also on 3 vitamins and mangosteen juice; it’s full on! I'm just doing everything I possibly can to help my son recover. I hope that he continues to improve.

Comment from: 3-6 Male (Caregiver) Published: October 01

I am just doing a little research. We suspect that our grandson has Landau-Kleffner syndrome (LKS), he was recently diagnosed with autism. I would like to get more information.

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