Seizures, Gluten and Casein - Oh My!

Here's a phrase many of you will recognize:  ABSENT SEIZURE.  Typically, this type of seizure lasts between 10 and 30 seconds. The person, most often a child aged 5 to 15, abruptly stops whatever he's doing (talking, walking) and appears to "stare into space" or look out the corner of their eyes. Absence seizures rarely cause a true convulsion, and despite briefly losing consciousness, the person recovers fully with no lingering confusion or other ill effects. These "spells" may occur infrequently or several times per hour. In children, absence seizures may interfere with learning and are often misinterpreted as impertinence or inattention.

So we've long suffered from these "Spells" since age 2.  We fortunately have never gone into a full blow, classic Grand Mal Seizure like any children on the ASD spectrum, but I'm always conscience.  Last week, as we approached our 25th session of Neurofeedback, Khalil had a day where he was completely FOGGY, incoherent and blurting out miscellaneous unrelated statements.  He also urinated on himself, and was complaining of neck/head pain.  I immediately called his Neurologist and The Drake Institute to discern the cause of such brain fog.  It was quickly decided to go to the ER, where we ruled out Meningitis and other infections.  The general conscensus was that Khalil may have had a mild seizure while at school, and we were witnessing the "recovery" stage. 

This is clearly something that gnawed at my soul.  How could NO ONE have seen him have a seizure?  This is precisely why we fought LAUSD to get a one-to-one aide for him.  WTH?

Long story short -- after probing & turning every stone (and person's ear that I could), I found out the trigger!!  Wait for it...

My son, who has a long documented Gluten Free/Casein/Soy free diet, was fed... wait for it... LASAGNE at school for lunch because the usual person was on sick leave.

Fury doesn't begin to describe my mood.  After truly reprimanding everyone involved, I was relieved to know that this was the most likely reason why King was so disoriented.  Gluten for King is like giving him Opium or Marijuana. He literally gets "high & loopy".  To add insult, they gave him CHEESY (casein) pasta, which messed his entire gut up, and went straight to his head (thus the pee pee incident and hang-over headache).

Mommy Warriors - PLEASE be aware of everything that goes on with your child when they are NOT in your presence.  Make sure the IEP team and anybody associated with your child is in fact... A TEAM.  My son should never have been fed that food, and we would not have spent hours in the ER poking & prodding his little body away.


For more information on the affects of GLUTEN & CASEIN on children with ASD, please visit:  http://www.webmd.com/brain/autism/gluten-free-casein-free-diets-for-autism

Another Mom's Testimony on Neurofeedback

While in the waiting room for our 15th Session of Neurofeedback, I met another mommy warrior.  She has one child on the Autism Spectrum and a pre-teen daughter with severe ADHD on 4 medicines.  She too is a single mom due to her recent divorce.  She looked tired, weathered, beat down and ready for a nice vacation that'll probably never come.  She looked like she needed a friend, soooo I said, "Hey Mama, how ya holding up?"  She said, "fine".  Then I smiled and said, "how are you REALLY holding up?".  She could tell I was on #TeamTiredMommy, and the floodgates opened.

Suffice to say, she told me the story of how her 12 yr old was responding so well to the Neurofeedback that they now had a new relationship as mother-daughter.  They were at the half-way mark of their sessions, and she noticed her daughter could now better understand consequences of her actions so much so that she actually could better control her wild impulses.  She wasn't a bottled up angry, speechless little girl and had blossomed into a young lady who could articulate her feelings -- even if they were angry feelings (from the recent divorce, etc).  Her teachers & peers noticed the positive difference in her personality "disorder" she had been diagnosed with previously.  In conclusion, the mother said, "we drive over an hour in traffic 3 days per week for our sessions.  it cost me a fortune and is worth every penny and minute in the car because I have a daughter I can now relate to and share 'moments' with".  She went on to say, "I told the Dr. if he ever needs anybody to be a spokesperson, he can certainly call on me".

I was relieved to hear her story because at ALL points, I question Neurofeedback and any "gimmicks" associated with high priced alternative therapy.  But I also certainly see differences in my own child, and it's good to hear about other success stories...

Share yours here! 

The Adventures of King Khalil in Autismland: Who is this new child? Neurofeedback Continues...

The Adventures of King Khalil in Autismland: Who is this new child? Neurofeedback Continues...: So after a busy New Year and 2.5 of 3 full weeks off from school and ALL routines, I'm happy to report all is good in Autismland with King K...

Who is this new child? Neurofeedback Continues...

So after a busy New Year and 2.5 of 3 full weeks off from school and ALL routines, I'm happy to report all is good in Autismland with King Khalil and MommyWarrior.  We went to Las Vegas for the New Year which couldn't have been more overstimulating with all the flashing, beeping, clinking lights of the casinos.  Not to mention the most amazing NYE fireworks show on the west coast.  King took it all in stride... no meltdowns, no fussiness (except for 1 day in particular) and his speech was amazingly clear.

We are now on Neurofeedback Session #14 of 42.  Not too many changes to report since our last blog, but I must say, we're definitely having more -- shall we say -- "neurotypical (NT) behavior".  In short, King Khalil has been feeling his Royal oats talking back to Mom, being sarcastic and even committing mischievious acts typically expected of his sister Ava (Princess of the Castle).   Alas, while I'm THRILLED this new, confidant persona has been unleashed, I did remind both King and Princess that there is only one Queen of the Castle... Mommy. 

Again, adding Neurofeedback is the only changes we have made in King Khalil's very strict Gluten/Casein Free Diet plus B & Omega supplements.  I did this deliberately to see what, if any, affect Neurofeedback would have on Khalil.  I can assess this new butterfly that has blossomed to Neurofeedback.  Khalil is more confidant in his speech and articulating more complex thoughts. 

He is still stuttering a bit, but has truly reduced his repetitive behaviors of pacing back & forth as well as has been sleeping a bit more sound WITHOUT Melatonin (NOTE:  I attribute the sleep to our being on vacation and him being more at ease at night without homework, school routines).  But who knows?

Teeth brushing and bathtime are still not fun, and I'm hoping to see positive behavior change or increased tolerance for these non-preferred activities soon.   In so far as concentration, his short term memory recall seems to be sharper, as we routinely went over his LETTER SOUNDS & learned more spelling/sight words for first grade during this holiday break on his Ipad.  He didn't get easily frustrated and actually was enjoying the fact that the work was coming easier to him.  Yes!!! Even he noticed it's becoming easier. Woohoo.

Perhaps it's God, perhaps it's good luck, perhaps its Neurofeedback, perhaps it's sheer coincidence.  Either way, I'm happy to report these results.  If you are considering Neurofeedback, please research The Drake Institute in California.  Again, not all symptoms are the same for any two ASD kids, nor are the treatments.  Decide what's best for your family and stick with it.  I hope opening up my world will benefit more families.

Sincerely,
Mommy Warrior
Queen of the Castle
AutismLand

Session 11 Neurofeedback - WE ARE WRITING

And still we are amazed by King Khalil's progress with Neurofeedback, no matter how small, incremental or accidental it may seem.  As you may know, King is 6 yrs old, in a mild Special Ed First Grade class, on track to get a diploma.  He has specific language delays which have hindered his reading comprehension, in that, LETTER RECOGNITION and PHONEMIC awareness as to how each letter sounds is distorted for King Khalil.  He consistently mixes up the letters b, d, p, q and their sounds.  I've questioned educators as to how can a child learn to read and "sound out" words if they don't master each letter sound first.  Basics, right?  Many many times, I've been told, "it'll come along" but in the meantime, we work like hell at home to make sure Khalil doesn't fall behind his classmates, who seem to cruise along.

Coinciding with his 11th NT session, we were at dinner and King decided to draw a picture and write a few letters at the top.  I thought it was random letters or (by my own instinct) figured he wrote his name or a few simple sight words that he knows by heart.  To my surprise, my son spontaneously and without prompting wrote:  ILOVEMOM. 

It took me a few seconds, but I deciphered I Love Mom... with a beautiful heart.  Somehow, someway, EVERYTHING we teach him is in his brain, looking for an easier way out.  I hope that Neurofeedback, diet and supplements are providing a clear path for the data to get out.  I'm just glad it's all in there!

For more research on Neurofeedback, please review The Drake Institute website.  Good luck

Christmas Without a Hitch, Today ~ Not so much!

Happy Holidays and Post Merry Christmas to my Autism Family!  Today, December 26 2011 has been an interesting beast.  Let's take a look back:

Christmas Eve and Day were almost perfect to say the least.  With all the hustle, bustle, blinking lights, bad traffic & long car rides for King Khalil and the gang - at least there weren't any melt downs from overstimulation.  We in fact, had to drive around the block a few times looking at beautifully decorated homes and lights to stall for time while gifts were being wrapped at the last minute at home.  Still... no incident.  In fact, an excited King loved all that we were doing and was using more sentences and descriptive words than usual (thanks to Neurofeedback).   "Oh Mommy, look it!"  "Oh My Gosh, I love how pretty that house is" "Mommy I so excited, Santa Claus is coming".  All favorite lines that now register in my mind.  After tracking Santa on Norad, the kids all hopped into bed and effortlessly went to sleep... even my lil ASD King Khalil. 

Christmas day was amazing.  As usual, it took King Khalil a few minutes to process that Santa mysteriously had come, placed TONS of colorful packages under the treee and disappeared as quickly as he came.  But once he saw his sister & cousin ravage open their gifts, King Khalil followed suit. More and more language emerged with each exciting toy.  He recognized almost EVERY gift he put on his Christmas list:  Mommy I got Lego Star Wars on Wii; Mommy look a puzzle; Oh my God play dough!  As my dad watched on SKYPE from Boston, my sister and I couldn't help but crack up over King's display of overt language and excitement.  And so the rest of the day went.  Without a hitch.

December 26, 2011 proved to be the opposite with the return of Grumpy Smurf (King's name when he's fussy). Everything was a problem, he fussed at his sister, cousin and me relentlessly for hours.  Wouldn't brush teeth, didn't want to eat, his tummy hurt, on and on.  All my ABA, PBA skills were ineffective and there was no redirecting him.  Even my usual tricks of "Mommy Time" where I rub his head and give deep compressions to his joints failed.  Grumpy Smurf was with us most of the day right up into an unexpected late nap at 3pm, something King never does.  Alas, he was probably overstimulated from the previous day's events and tired himself out, but unable to express his exhaustion like Neurotypical kids.  One thing we have found with King, it takes him longer to process stimuli, good bad or indifferent.  But once he get's it, he get's it (whether learning a new skill or falling out from sheer exhaustion).  Suffice to say, a well rested King Khalil gets rid of Grumpy Smurf, hopefully not to return again for a few months (so says the delusional Warrior Mom of Autismland)!

Happy Holidays Autism Family!

The Adventures of King Khalil in Autismland: A Whole New World

The Adventures of King Khalil in Autismland: A Whole New World: Today is my first blog post in The Adventures of King Khalil in Autismland. Here you will have direct access to the on-going saga, mileston...