Re: Re: on right path/OT -LKS

[Guest guest]

Hmmm,

This is what they were looking for with my son when they did a 4-day EEG, but

they concluded he did not have LKS. He was already on IVIG when they did the

test, so I wonder how much that affected the outcome.

-

Lake wrote:

Dear and Angie, I hope this is not off topic, but I think it's

OK because it's in the context of how much the SCD is helping my son who has

LKS. I've had a lot of experience with LKS, and I want you to know that it is

not AT ALL unusual for an LKS child to have an EEG that does not consistently

show abnormalities. You may have to do the EEG for 48 or 76 hours, or your child

might have to be sick or stressed for his EEG to become abnormal, causing the

regression, and then the EEG could normalize the rest of the time. Your child

may still have a variant of LKS even without an abnormal surface EEG. If your

child had a magnetoencephalogram (MEG) it might show spiking going on at deeper

levels of the brain that don't show up on a surface EEG. One world specialist is

Dr. Chez in the Chicago area. I was making a documentary on LKS (I had

to stop that in order to work full time) and I interviewed several of the world

specialists.

There is also a great difference of opinion among neurologists about what

constitutes an abnormal EEG. I had some neurologists swear my son's EEG was

normal, but when I showed the actual EEG tracings to the world specialists, they

all agreed it was abnormal and typical of LKS. I still have neurologists to this

day questioning whether he has LKS -- it makes me frustrated to say the least.

Some of them are looking only for continuous spike and wave, or for spiking only

over the temporal zone. However, they are mistaken because some kids have other

epileptiform abnormalities and other sites of spiking that are still

classifiable by the world specialists as LKS variant or Epileptic Regression

Syndrome. It just isn't taught in medical school, so it is poorly understood and

in the opinion of the specialists I interviewed, it is way underdiagnosed. They

believe that a large percentage of kids with autism may have it. Around 30

percent of these kids never have a noticeable

seizure, although the child may be having undiagnosed absence seizures or other

seizures that are hard to notice.

Anticonvulsants such as Depakote are usually prescribed (do not use Tegretol, it

makes these kids worse), but for their language to get better, they almost

always need anti-inflammatories too, which in the medical world are meds such as

prednisone or immunoglobulin infusions. However, each of these has its drawbacks

and side effects, some of them quite unhealthy.

This is where the SCD diet comes in -- if indeed it has anti-inflammatory

properties or addresses the underlying causes of the brain inflammation, wow!

All I know is, it is working for my son, although I do feel I'm still fine

tuning on the diet. It really makes sense to me. The improvement in my son was

noticeable from the start -- he started surprising us with the things he could

say and was calmer at school. I'm very hopeful for more wholistic healing for

him than the medications have provided. He is happier too, and he loves the

recipes in Elaine's book. Wish I had found this diet years ago, but better late

than never. The human body has an amazing ability to heal. Best of all, it is

something I can do for him without having to enlist the help and support of a

neurologist.

Please feel free to email me privately if you would like to talk more about LKS.

There is also a yahoo group for LKS, although I haven't been on the group for

quite a while -- just really busy.

Thanks,

Mother of Virya, age 16, autism, LKS, apraxia, aphasia, on SCD since March 07

bstokes56 wrote:

In " Gut and Psychology Syndrome " , Dr. -McBride after listing

all of the positives of olive oil writes, " It is not a good idea to

cook with it, as the heat will destroy the minor components and

change unsaturated fatty acids into harmful trans-fatty acids. "

??? ??? ???

it seems we share a number of common threads. Our

son " became " autistic 6 weeks before his 3rd birthday when he began

a SEVERE behavior/language regression. Prior to that he was typical

developing child, advanced in language. One of our 1st visits

following this was with a neuroligist who told us that our son was

a " classic, textbook defintion case of Landau-Kleffner " Apparently

she even did her thesis or undergrad work or something on LKS.

However an overnight EEG found her prelim. clinical dx unfounded.

We later went to another nuerologist and we replayed the exact same

scene...a believed clinical dx of L.K., overnight EEG proved

otherwise...

We also did CF-GF and probably did greater harm then good with all

the yeast/sugar/rice etc. that dominated his diet. Our son continued

to " regress " with CF-GF and 40 hours a week of ABA and the DAN!

protocal. We, about six weeks ago traded CF-GF for SCD and continue

with ABA and DAN! The latter has been scaled back a bit though as we

removed a number of supplements that weren't legal.

Back to the oils, we're looking for help with that too. We are using

coconut oil and ghee with our NT daughter who is also SCD (and doing

great!!!) but are hesitant to give it to our son when he continues

to have loose BM's etc.

We appreciate the opportunity to have this forum to learn from

others and help our son. Thanks Again.

& Angie parents of Garrett age 3 yrs 11 mos. (ASD) and Kylie 5

yrs (NT), SCD for 48 days

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[Guest guest]

Dear , I believe that definitely it could have affected the outcome of the

EEG. IVIG is used sometimes to treat intractable epilepsy, plus it is used to

treat LKS, so this would make sense. Is he still on IVIG? My son was on for 9

months with good results, clean EEG, but I could not convince the Canadian

medical system to continue, and have not been able to convince any neurologist

since I moved to the SE United States to start IVIG again, even though it

definitely worked and I documented that with speech therapy testing results

before, during, and after. Within three months after stopping IVIG, the EEG

started showing spiking again, with a corresponding regression in language.

With SCD, I'm seeing some of the same improvements as on IVIG. Are you doing

both at the same time? What results have you seen?

Thanks,

Mother of Virya age 16, autism, LKS, apraxia, aphasia, on SCD since March 07

Rob or Sunseri wrote:

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