Hi, my daughter Hannah was diagnosed LKS at age 7. She was on pred and then weaned then lost recently on lamictal and clonazepam. On Monday she started having...
My daughter was diagnosed with LKS aged 3. She lost all receptive and expressive language. It took us over 12 months to clear her night time EEG however she...
Peta - I just had this conversation with a neuro yesterday. A new neuro is taking care of us during a hospital stay and she reccommends a cognitive workup. Our...
Hi Peta, its funny that you bring this up..Zander has an appointment tomorrow to have his IQ tested and emotional/social development...I am also a bit nervous,...
Sedona has LKS and Cerebral Folate disorder. Because of the CFD she has to be tested every year. Same thing, take them into a room alone, with a person that...
Rosa, My daughter's neurologist sees many children with many different disabilities and cognitive abilities. Kids with LKS don't do well on IQ tests, but...
The problem that we had in school with Sedona is that they thought her IQ and her speech level were the same thing. They looked at her speech level of 34...
Dear Friends and Family, I created a CaringBridge site to keep you up to date on Sedona Marie Seideman. CaringBridge is a nonprofit organization that helps...
Hi everyone, I am happy to find a support group. My son, now 7, was diagnosed with LKS 4 years ago. It has been a difficult road for me without social and...
My daughter picked up sign language very quickly, I think because it must use a different part of the brain. We started out learning together and she totally...
Hi, My son Tai is also 7, and was diagnosed when he too was 3. At his worse, Tai lost all language, receptive and expressive. I first used a photo board to...
We started with sign when our daughter didn't have any language. Then we went to PECs and now a communication device (dynovox V). Her comprehension and...
I am a great fan of sign language..although we use Makaton as we found BSl too difficult for Lititias comprehension. she talks well now but still uses it ...
Sign Language has been a life saver for Zander...I bet you will be pleasantly surprised at how quickly your son will pick it up...Zander was diagnosed with LKS...
Hi Sam, Thanks for the response. He stopped depakote 2 months ago but I feel he is regressing. We have a 24 hour EEG pending. He is not on any meds now....
Hi again, Has your son ever had a clear EEG? I just wondered, because for some doctors, this doesn't seem to be a priority. I believe the aim is to clear the...
PECs are a Picture Exchange Communication system. Mayer Johnston sells them. If you want a copy of board maker let me know. I can burn you one. Dynovox is a...
Hi My name is Sue and my daughter Anna was recently identified with LKS. She has a host of medical issues with generalize seizures starting at 3. She is 9...
Hi! Im Sam and I have a 6 year old daughter with LKS She had no speech until about a year ago and now doesnt stop talking! I think it varies but Lititia is ...
Hi Sue, I am Daunette, and I have a 7 year old boy with LKS. He was diagnosed at at 3. Learning is a struggle for him too but he has learned to read almost...
Hi Sam, He did have a negative BEAM EEG at 6 years old. It seems like there are some experts out there that I may not know about. So you know of any good...
Hi, What is a negative BEAM EEG? Sorry, not familiar with that! Tai just has the ambulatory EEGs, he takes home a little back pack, and we return the next day...
Hi Sue, I am also Sam, mum to Tai age 7. As the other Sam said, this illness varies greatly from child to child. I assume that your daughter has had an EEG...
Hi Sam, My son did have a clear EEG at around 6 years old. This was done by the BEAM test. It is done by superimposing the 2 hour EEG upon an MRI of the...
Hi Sam Thanks for the email info.; So here is the 411 on Anna. Yes she has the spike pattern in her slow wave sleep cycle as documented by a video EEG during...
Hi Sue, Some doctors do chose the pulse dose method. I know that it can be extremely effective in some children, without the usual side effects of steroids....
Sam THANK YOu so much for helping me through this.. so let me clarify Anna takes 5 ten milligram tablets of prednison each day for 5 days (wed - sunday) then...
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