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Landau-Kleffner Syndrome

Slagerwey Message
3 May 2010, 01:32 AM

My son, who just turned 5 on April 6th, 2010 has been diagnosed with this back in December. What a roller-coster ride it has been! We have been on the 'search' for ANYTHING that could explain our son's 'behaviors/quirks/rages/delays' since he was about 2 1/2. He has been tested/poked/prodded in EVERY possible category you can think of. We have worked with Pediatricians, a Natrualpath, Occupational Therapist, Physical Therapist, Chiropractor, Neurologists, Vision Specialists, Nutritionalists, a Child Psychologist, developmental pre-school (2 years)... He started having Absance (sp?) Seizures at around 3 years old. This lead us to Children's Neuro for Epilepsy. Autism was ruled out from Children's hospital (in Seattle). But, confirmed he was having seizures. So...1.5 years on seizure meds maintained through Children's. We thought he was a 'lifer' on medication and we were just going to have to deal with Epilepsy his whole life at this point. This past September, he was diagnosed with Tourettes Syndrome and ADHD from the Child Phsyc who only met him for a total of 15 minutes. We have documented EVERY move our son has made since 2.5 years, any piece of food/drink he has put into his mouth...tried all the diets hoping it was something he was eating... After the Tourette's Syndrome diagnosis, I wanted (yet, another) second opinion. We found a Neurologist at Swedish hospital (Seattle) who specialized in Tourettes. Just before our visit, he actually had a Grand Mal seizure laying next to me in bed for the 1st time ever. SO SCARY! Within minutes of the Neurologist meeting our son (now 4.5 years), he said there was NO WAY he had Tourettes! The Neuro reviewed EVERY test taken on my son and put it all together...with the behaviors, developmental delays, "Jekle/Hyde" behaviors, Autistic behaviors, (and the list goes on...) combined with seizures, he concluded it was LKS Syndrome. He ordered EEGs. Awake, he had little/no seizure activity. Sleep...well, that was a different story! His sleep was filled with seizures (every 10-20 seconds!)...which would explain why my son would never sleep, be tired within minutes of getting up in the morning, etc. The only way we have been explaining our son the past 2.5 years is that it's like a 'swtich' is turned on, then off. We see moments of a 'normal' child...communicating, talking your ear off and a VERY good memory...then the switch flips, and he wouldn't be able to reason, speak/communicate in the advanced way we knew he could, he would trip/fall more, weird stuff like that. The Neuro put him on a VERY high does of Prednisone in January (steroid) at 50 mg/day!, and changed his seizure medication. This combination is researched with this Syndrome and has success rates. My son was scheduled to be on the prednisone for 3 months. At TWO months, he had his 4th EEG, and found that his seizure activity was GONE!!! So, here we are...on week 4 of 8 TAPERING him off. His behaviors, rages, ADHD, ticks, sleepless nights, etc. have ALL IMPROVED GREATLY! We are still VERY unclear as to what our son will 'be' like after he is completely off of the prednisone, but we can't WAIT! Side effects: I think he had every/any side effect possible! 'Roid' rages, miserable in his own skin, anger (I HATE YOU, MOM!), physically aggressive, fits of crying, hair growth on back and uni-brow, constantly hungry, went from 47 pounds to 86 pounds at his peak, body aches, zero energy, stretch marks. I have been taking progression pictures that are absolutely amazing to know they are the same boy. Since I am in the middle of this all, I really can't say if it is completely worth it...and, if his seizures will come back...but, what we have seen so far, we may be meeting our Son, whom we have never 'really' known, for the 1st time! Two & a half years later... I have yet to find/meet anyone else out there who has a child with this diagnosis. The Neurologist who diagnosed my son said that out of the 22+ years he has been a Neuro, he has only diagnosed 8 kids with it. VERY RARE and they are still researching/learning about it. We have 3 sides of our family...the road hasn't been very one point the comment "you are looking for something to be wrong with him" was said by one of our family members. We changed pediatricians at the beginning because the Dr. said my son was just displaying attention seeking behaviors. All I wanted to say to everyone who made me feel crazy was LIVE WITH MY SON FOR 24 HOURS! Would LOVE to hear from anyone else out there and their experience with this :) Update: Now October, 2010. After being completely off of the prednisone since June, his seizures are slowly coming back. He is on a second treatment: Depakote (seizure meds) with Lorazapam. What a mess we are back into now. The Lorazapam makes him a drunk 5 year old. His negative behaviors are increasing causing problems at school and daycare. But, it IS helping him stay asleep again. He will be seen again in 3 months for his 7th EEG to see if this helped decrease seizure activity...