Lucy,
Wow! Thanks for your detailed reply. I was beginning to think I was the only one
that was long winded and lacked brevity in my replies:)
My older son (12yo)has been on allergy shots for 5 years due to severe indoor
and outdoor environmental allergies (much improved). He had moderate to severe
reaction to nearly every allergen tested EXCEPT any foods.He is a normal kid,
straight A student, social, into sports etc.He nor myself or my LKS suspected
child (Thomas) has ever prick tested positive for any type of food allergies nor
had any dietary issues with foods. We avoided canteloupe when my older son was a
toddler because it always made him puke...I later learned this fruit is in the
ragweed family (one of his severe allergies). He can eat it now without problem.
Thomas was allergy tested at age 3 and again at age 6 and only had minimal
allergy to few grasses, couple molds and cat hair , no foods ever popped. He has
never had allergy shots nor ever had any issues that made me believe he needed
them.My husband, as a child, had strange skin allergies/rashes (all the skin
peeled from his hands).No MD ever figured out why... they just treated the
symptoms with steroids until he "out grew" it. None of us have ever had any
blood work "work up" related to allergies to know if anything is really off.
I have read a little on the NAET stuff, definitely unorthodox, somewhat "hokey"
scientifically (for me,as a nurse)but I am of the opinion if it works... don't
argue with results.
We have all been through so much with our kids I will never fault anybody whom
tries different approaches to same good outcome and positive result.
I have been to a chiropractor in past who utilizes principles of kinesiology
when my leg length was off by about 2 inches following both my labors causing
back pain and when I pulled my shoulder out. He fixed me using accupressure in
no time on all 3 occassions. I'm not one for taking medications for pain and
this was fastest, safest approach and it worked so...I was a believer.Few visits
and I was fixed every time!
There is something to be said for blending of Eastern and Western medicines with
use of less toxic, synthetic medications. Science and medicine is an
evolutionary process...still learning...much can be learned from both camps.
For Thomas, I don't have a whole lot of evidence nor testing done to prove his
problems are allergy related. So...we are going to try the pulsed steroids to
see what happens. He has had visual IQ testing that is "off the scale" and does
not correspond with verbal IQ (consistent with LKS children's usual pattern).He
is operating like an 18 year old visually and a 6 year old verbally when he was
8.5 years old. He has been tested as having some "working memory", executive
function issues which is long term complication of LKS...can't say as either
me,my husband or other son suffer from this. All of us seem to have pretty good
photographic memories, visual lerners and are good spellers for the most part
(including Thomas!). We are pretty average folks... not brainiacs nor idiots.All
of us fairly healthy...minimal health issues.
I also believe in the power of prayer...I have just recently began to ask for
specificity in our prayers because for so long we never understood the "real
nature" of his problems to have specific requests.I believe we are seeing better
results now. I have been a nurse far too long not to believe in miracles and
have seen people get better that defied conventional medical wisdom.
Good luck with Nicholas...thanks for sharing.
I also have more to research on brain suite CD's...new one for me...will have to
check it out online also.

Sharon



--- In LandauKleffnerSyndrome@yahoogroups.com, "Lucy Koch" <lucy_koch@...>
wrote:
>
> Sharon,
>
>
>
> We went through Speech, OT and PT since he was about 20 months old as well
> as 2.5 years of special needs preschool. We dropped OT and PT a little over
> a year ago and he's just been having speech at school for the past year.
> He doesn't have any other diagnosis but there are some other odd issues in
> the family with memory. There are people on my side with weird things like
> perfect color memory and photographic memory and then on my husband's side
> the guy all have really impaired working memory but fantastic long term
> recall, especially of technical information. Christian, our older son,
> tests 30 points lower in working memory than all other areas of IQ. We
> didn't have the non-auditory IQ test done but I'm curious what the
> difference would be. They have to be about 7 to check for that and have a
> certain amount of math skills so Nicholas isn't old enough to check yet but
> I suspect that may be a contributing factor for him. He also had issues
> with his vision. We identified that at about 19 months and he was +1 And
> +4. Within a year he was +4 in both eyes and over the next couple of years
> he got up to +7 in both eyes. We thought he would be legally blind by the
> time he was 10 at that rate but about a year ago he had dropped back down to
> +4 in both eyes. Given the drastic changes we would see over the course of
> just a few months, I imagine there were times when he didn't see well which
> probably made modeling and eye contact and all that sort of thing more
> difficult. It may be why he never took to sign language or the
> picto-boards.
>
>
>
> Looking back on the family histories, there are a lot of people with chronic
> conditions that I suspect may have been food allergy or intolerance related.
> He had a traditional allergy panel right before he turned 6 and it showed
> almost nothing. That was perplexing since something was giving him hives
> once in a while. But, our allergist said that he was a bit young to get a
> good read and that if he has allergies like mine, they may not show up at
> all. Mine are really weird (or at least they were) in that the blood work
> and skin tests would be inconsistent with each other and from test to test.
> I also have a very low IgE level (around 8) while most people that have
> severe allergies are in the 10K range. Given the weird conflicts he
> concluded that many of mine are likely T-cell mediated allergies - usually
> they see those in really young children. RAST doesn't pick those up and the
> reset mechanisms are different so sometimes it would show up and sometimes
> not. To give you an idea of how that plays out I had a fire ant bite last
> year and had a very severe reaction. I didn't use the Epi-pen because I
> didn't know I had been bitten and I also didn't know I was allergic to them.
> But I couldn't breathe so I ran in the house, took Benadryl and used my
> inhaler and got in a cold shower since I felt really hot and I had been
> outside (I didn't know if it was a pollen reaction so I wanted to wash off).
> Anyway, the cold will keep the reaction from spreading so fast which likely
> helped a lot and I took 4 or 6 benadryl over the next hour before it calmed
> down and I could breathe well. In hindsight, I probably should have gone to
> the hospital but it was hours before I even saw the bite. So, I went to the
> allergist to get checked - had to wait several weeks for the system to
> reset. My blood work was negative for fire ants. So he started the skin
> test panel where they work up your arm with 10 shots of varying strengths.
> By shot 9 there's still no reaction and he's telling me that I'm definitely
> not allergic and it must have been something else. Shot 10 however was a
> big welt. However it works in my system, it doesn't show up really well on
> their tests unless it's something like that where they know what they are
> looking for and they look really hard. Now at least for fire ants I can get
> allergy shots. There's pretty much nothing they can do for food allergies.
> That's assuming that they can even accurately identify them. I've been
> allergic to mustard my whole life. Only about 25% of people allergic to
> mustard show positive for mustard allergy. Most of them are allergic to
> Birch (I think) and it's cross-reactive since the protein are similar.
> Given those results on a blood test, you might spend all day avoiding trees
> at a picnic when the problem is the mustard on your hot dog. That's why I
> went to try NAET. I was anaphylactic to soy and then figured out that I did
> better with no diary and even better with no gluten. Combine that with
> being down to about apples and pears for fruit and an ever shrinking list of
> safe vegetables, I was running out of foods I could eat. So, that's where I
> ended up. I figured that if the allergist can't identify the allergens and
> that even if he could, he couldn't do anything about it then it was time to
> try something else. Too, we figured there may be some factor in there that
> might help the boys with their memories and there may be something that
> would help Nicholas. Once I had the NAET testing and saw what I was
> allergic to, it made sense to get the kids checked and/or treated.
>
>
>
> I know they use NAET a lot for kids with Autism, ADD, and ADHD when there is
> a food allergy/intolerance component. Our practitioner actually got started
> with it because her son was autistic and they were looking for some
> alternatives to help - she's also an RN so she's well versed in traditional
> medicine. A lot of doctors are trying to incorporate alternatives though.
> Nicholas' neurologist has been studying eastern medicine to see what might
> help and there is another physician there that has begun incorporating
> hypnotherapy. Anyway, she took her son for NAET and the turn-around was so
> dramatic that her family encouraged her to go and get trained. I know a lot
> of people think its silly but as alternatives go, I'd rather have a NAET
> treatment any day that spend hours in a hyperbaric chamber or something like
> that. Not that I'm opposed to the invasive where needed but I'd rather
> start with the simple. Like I said before too, my kids love the NAET
> treatment. I don't think I'd get the same response with many of the other
> options.
>
>
>
> I have noticed over the past several days that Nicholas' speech seems to be
> improved. Not so much his articulation but more the content. He's having a
> lot less trouble with word-finding and where he would normally only say a
> sentence or two before he had to regroup and come up with the next thought,
> now it's more like he can talk in a stream of consciousness way without so
> many breaks and delays. He's also a lot less whiney than normal though I'm
> not sure if that is due to one of the allergies being resolved, being able
> to better express himself or both. His speech sounds much more fluid than
> it ever has and true test, other people can understand him better than I've
> ever seen. This is all in the course of the past week - Nicholas isn't
> afraid to go up and talk to people so we get a lot of opportunities to see
> how well other people can understand him. I'm not sure if all kids have an
> allergy component like that but it seems to be of great benefit to him.
> There is other stuff we have used and use -like the brainwave suite CDs that
> I've mentioned in other posts and I think those help a bit as well. His
> neuro certainly seemed interested in them once I told him how they worked.
> And, too, we have a lot of people that pray for Nick. I think it's easier
> too when people have specific needs to focus on so don't be afraid to ask
> for help and give them some real specific things to pray for. If you have
> a prayer team, remember to update them with any progress. A while back we
> even started laying hands on Nicholas during our bedtime prayers. My kids
> are fairly small, my oldest is 8, and it helps them all pay attention but it
> also helps them focus on how they have a role in Nicholas getting better and
> I think to some extent when we do that, it makes them realize that Nick has
> a little harder row to hoe and that they need to be more patient with him.
>
>
>
>
>
> Hope all of that helps,
>
> Lucy
>