This is Dray with his AMAZING neurologist, Dr. Chez. Words cannot express enough gratitude to this man! He is the most caring, thoughtful, knowledgeable, loving, and definitely most determined doctor I could have found for my son. I remember feeling so hopeless as far as medical treatments, because doctors here in Utah had made me feel that there was NOTHING left for him. One doctor said, "what would you like to do.....?" and I literally mean there was just an open end to that question. He basically was telling me he had nothing and I just could tell him what to prescribe and he would do it. But, that is never true! If I have one piece of advice to give to a parent who has been searching and hasn't found relief from this form of epilepsy, I would say do NOT give up! You need to change course get a new opinion... you will find the answer. Dr. Chez from day one was absolutely determined to find the answer for Dray. He was meticulous, asked me lots of questions to really get to know Dray personally, and let me talk and ask as many questions as I desired. He is ALWAYS so responsive...couldn't be more grateful....can I say that again, I probably could a few more times and still not say it enough!!So, Dray is doing well, he is progressing like crazy. Right now we have several concerns. It's deciding which concerns to battle the most aggressively. We are always trying new things to help him with his speech. At this point it's learning the correct words for everything, distinguishing his vowel sounds better, understanding his more complex world, following more complex instructions, being able to socialize with other kids, and being able to keep up with school work. That all sounds like a lot when I write it down. But, I'm just so grateful that he CAN communicate so effectively enough to get by and that he CAN do his school work so well. Trust me...it's a long road to catching up with other kids his age, but communicating with him now, versus 2 years ago is night and day. I will try to put up a video of him talking soon. I keep forgetting to put it on. But, it will give you a good idea of where he is at and you will definitely see the deficits in speech. However, just being able to have a normal flow of conversation, for the most part, is a miracle everyday for our family. I try not to take that for granted.
So here are the things we do to help him progress even more:
With school he goes to a private school that uses ASL along with speech in class. He has an aid to work with him one on one. I am also getting him a tutor once a week to give him even more personal attention with school work. He does well in most subjects. He just has a really hard time with attention/focus and has terrible hand writing. He is not able to do things with the other kids like memorizing poems/songs and he struggles like crazy to with counting...weird. He knows it, but the memory part of counting is where things get ugly for him. He does so much better if he signs it, but is a stinker about that :(
He has 1.5 hours of speech each week. Working on mostly discriminating sounds (earobics on a computer), and also still understanding concepts (first, second, before, after, etc).
He has a music class. Which I did NOT have high expectations for, but he has done amazingly well. He makes Herculean efforts to sing songs and is able to do the more simple melodies. He is probably at least a word behind in every song. I mostly did it for him to practice with pitch and sound recognition, but he is doing amazing with understanding music theory and recognizing different patterns in music.
He takes zarontin, depakote, L-carnosine, and namenda. Thank goodness Dray takes pills now...that's all I can say for that!! He also has a patch for his ADD. It has been helpful for school.
I hope any of this is helpful. I think if I can say one last thing that breaks my heart for him...is his inability to have close friendships. I really could use some good advice, of any kind, on how to deal with that aspect of his life. I really don't know how to help him. I just keep hoping that his speech will catch up and at this point I need to have more patience!! But, that's just part of parenting, right?
Hi, My son aged 7 has LKS, (diagnosed 2yrs ago). He is currently taking upto 12 different medications with a total of 35 tablets per day. His epilepsy is uncontrolled and we have exhausted many avenues of treatment. Had multiple hospital administions/tests etc. He is currently under a team of 12 specialists. Would love to have a chat. I created a facebook page. Epilepsy - Raising a Child with LKS in Australia. This condition is so unknown and so rare.
ReplyDeleteI will look up your facebook page. There are a couple of other good facebook pages as well for LKS families. There was a family in Australia with a daughter that is recovering from LKS. She seems to be doing very well after losing all spoken language for several years. I'll try to find her name for you. I can't remember. Don't give up on your son...keep searching and changing methods and doctors. You will find the answer. Hopefully soon!
DeleteI have a 7 yo with LKS diagnosed in November of 2011. He has responded well to Lamictal 25 mg two times a day and Diazapam 10mg at bed. We are doing Fast ForWord by Gemm Learning has helped him gain a years reading level in 4 months! Hope this info helps someone.
ReplyDeleteI will look up that program. Dray is doing pretty good with reading, but could always use more help with it. Thank you!
DeleteI too have a 7 yr old with LKS. I came across this blog after you had written your last post and I am glad to see that you have posted an update. There are so few personal accounts of people living with LKS that it is really helpful to hear what another family is doing.
ReplyDeleteThanks to your blog I am now looking into L-carnosine. My son had been doing very well but has begun forgetting names of people he knows well. He recognizes the people but doesn't remember their names.
I wish your family the best.
I remember when Dray was first diagnosed I couldn't find anything that documented treatments and progress from diagnosis to when they were older and grown out of it. So, that was my goal, to give people an account of everything that has helped or that we have struggled with through out this disease. Look into L-carnosine. I have noticed great changes in memory and auditory processing, especially. Best wishes to you and your son!
DeleteHi. I'm also looking into L-Carnosine for my son, Martin, 12 yrs (has had LKS since 2½ yr, has tried most medical treatmenst and had MST-surgery in 2005). His seizures are under control now (he takes Rufinamid 600+600 mg and Clobazam 5 + 10 mg), but the language and social skills are not too good. What has been your experience with L-Carnosine?
ReplyDeleteI would love to let Dr. Chaz look into Martin's case - but we live in Denmark, so....
You have been through so much. I wish you could see Dr. Chez as well. Initially it would be a HUGE financial and time commitment, to come and see him in California. But, over time, we see him much less frequently and can do almost all of his labs, tests, and meds from where we are in Utah. Keep searching though even if you have to find a different doctor and new meds...whatever it takes. These kids are so worth the fight. L-carnosine has really made huge differences in my son's auditory processing and memory. I hope it helps your son as well. Best wishes and keep me posted!
DeleteIn regard to your proposal that L-carnosine is responsible for the improvement: I can confidently assert that that is a load of nonsense. The levo- stereoisomer of carnosine, also known as L-carnosine, is merely a dipeptide consisting of the amino acids [beta]-alanine and histidine, acts as a free radical scavenger [i.e., has anti-oxidant effects], and chelates heavy metal ions, among other things; with a healthy diet, this is utterly unnecessary. As a (currently presumed) progressive and/or juvenile myoclonic epilepsy sufferer of unknown aetiology with concomitant occasional cerebellar ataxia under the care of Australia's largest epilepsy research centre, and both Bachelor of Pharmacy and Bachelor of Medicinal Chemistry studies behind me, I can confidently assert that any improvement has almost certainly _not_ been due to such therapy. I am posting here primarily because sufferers of serious illness, neurological, developmental, or otherwise, may presume that this is some sort of "miraculous cure", as with many other CAMs [complementary or alternative medicines, which are often "snake oil"]; Chez et al (Nov 2002, J. Child Neurology 17(11):833-7) indicates only anecdotally, and without anywhere near sufficient statistical data, that there _may_ be marginal improvement in neurological deficits in children with autistic spectrum disorders. Animal models only show efficacy when injected intracerebrally, i.e. into the brain. To offer anecdotal accounts as "proof" of efficacy is scientifically unethical and morally bankrupt; certainly, it will not harm your child, or anyone else, to supplement their pharmaceutical regimen with this substance, but it is not standard-of-care and it is seriously ill-advised to presume that it is responsible for the observed improvements. Traditional pharmacotherapy is the more likely explanation; as the popular adage states, "correlation does not prove causation", and this is a post hoc ergo propter hoc argument. That an MD would attribute such effects directly to this mostly unresearched, unlicensed, and unapproved for clinical use, substance (I presume this is where the idea came from, a certain Dr. Chez?) should be reported to a state Board of Medical Examiners in the US. I am glad your child has improved, but please do not disseminate potentially dangerous ideas on the Internet. False hopes and expectations may be financially ruinous, particularly given the free publicity you are providing to a particular doctor experimenting with an off-label organic substance found _naturally_ in dietary protein sources.
ReplyDeleteApologies for the long post (I should have paragraphed it appropriately, and not taken such a severe tone), but I have significant experience with both quackery and real pharmacology, as well as chronic, intractable and serious disease. As I stated at the end -- I am very glad for your child's improvements, and wish you all the best. God bless! :)
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