Hi my name is Rebecca, my son CG has been diagnosed with KLS, (I actually diagnosed him after watching a episode of Montel) Then I took him to his nephrologist and he concured that CG does have KLS. CG is currently In a episode and they have him hooked to a EEG, it took ALL day to get him hooked up and he still isn’t fully hooked, they were unable to get his facial leads on, he was just to irate!! I would really like to talk to another parent that has been through this. I promise to fill you in more about his episodes, but I am going to go to bed I have had a very rough 2 weeks and need to get some sleep. God Bless you all Thanks for any help you can send my way.

                                                      GOD BLESS——Rebecca

Hi Rebecca,
My name is Diane. My daughter has KLS. I’m so sorry for what you have been going through. My daughter has had KLS for about six years. It is such a difficult illness to understand. I have been through a lot with her and I’d be happy to offer you support where I can. Feel free to contact me if you’d like to talk.
Best,
Diane

Hi Dianne. CG has also had this for 6 years, he so far has only had major spells every 3 years, but those put him in the hospital. Where are you located? I am in Ohio.

Hi I need Help! Had my child verbally and openly degraded about his disability in front of others at school by an-teacher this cause him to come home crying. i tried to go to the school and explain why the wording they used was wrong . they tried to have me bared.I carry a tape recorder in my bra a back up .all this has cause him to go into a sleep pattern earlier then usual and longer while on meds . I’ve been studying and found people with sleep problems can have high anxiety when bullied. they want to put him on meds he is on so many others already . to help the school I am against it since what they did breck the law.If it was to help him yes but removing the bullie or re educating them . Also they(ins) want to put him in the phyc area due to it being a depression situation prior they think .they ACTUALLY DO NOT KNOW brought on not just reg nuro ? How do I get a doc who helps with the head and knows about KLS ?so he is not lock up with the wrong children . for the very wrong reasons.My pcm is wonderfull but when i took him in suggested the deppression meds knowing the KLS .