Superhero Results.

Thursday morning came without much fanfare.  I dropped the little boy off at kindergarten for a very short day.  I came back a little over an hour later and we made the trek down to Sacramento to the Autism Medical Treatment Center.  This was our second day in a row of visits there.

This was our six month follow up, from his seizure diagnosis.  It was six months ago, we met the man who has become our superhero, guide, mentor, sage, and what-have-you.

Our Hero.

Last year, I was searching, learning, forming opinions and trying to figure out where we were.  When I got the diagnosis for my son at 3 years and 10 months old, I felt like we’d been dropped with a parachute in the middle of a deep forest called autism.

I feel like our superhero swooped down, gave us directions, and lifted us out of the deep forest, setting us down in  the meadow.

Dr. Michael Chez is an unassuming man.  If you passed him on the street, he would not stand out to you.  He doesn’t wear a cape.  He’s not haughty or dismissive.  He’s unlike many a medical professional I’ve met as lawyer, cross-examining doctors at trial, and in my own life experience with health care providers.

He’s kind, honest and open.  He genuinely wants to help.  And best of all, he knows how to navigate a very foggy road.

In early October, just after my son’s EEG revealed seizures, Dr. Chez started treatment, prescribing Depakote and other drugs.  Before my son took the first dose, Dr. Chez had the on-staff psychologist come in and perform an assessment for a “baseline”.  I never got the results before last Thursday.

We all talk about assessments.  We have them when our kids are diagnosed and when they begin speech and OT and ABA and as they get older.  These assessments rate our kids against neurotypical children.  They tell us what age our children with delays are functioning, i.e., Johnny – chronologically age 8, for example, functions at the level of a neurotypical 5 year old.

I know someone told me where my son fell on this scale.  I know I read it.  Until last Thursday, I, seriously, did not recall the results.

I do remember last October, that when Dr. L  started assessing my son that I, foolishly, tried to help or prompt my son through the questions which I knew he knew the answers to.  I was chastised by Dr. L.  I was sufficiently embarrassed.  Part of the test was my son’s choice to answer or not.

It turns out that the assessment last October, when he was 5 years and 4.5 months old

Last October, physically...

showed him to be operating at the age of a 2 year and 7 month old child, receptively.

Last October as assessed...

Expressively, he was around a three year old.  Clearly, delay.  Worse yet, when I shared these results with our ABA provider, the assistant clinical director went back to my son’s initial assessment with them.  When my son was 4 years and 1.5 months old,

First assessed by ABA, physically...

he was assessed at the level of a 1 year and 11 month old.

Assessed age...

These numbers are pretty scary.

Assessment with Dr. L last Wednesday.

My son is now 5 years 9.5 months old.  Are you ready for this?  His results showed him at 4 years and 7 months old receptively, and 6 years old expressively!

Do you see why I feel like Dr. Chez is our superhero?

Dr. Chez says that this rapid, huge change in a little over 4 months, happens in less than 10 percent of all cases.  My son’s unique circumstances, his unique brand of autism, has been exceptionally responsive to this treatment.  I knew that his language and his listening had increased and I was seeing progress.  I just had no idea how much.

The repeat EEG that was done at the end of February, just a couple weeks ago showed NO abnormal activity on the left-side of the temporal lobe where it had been!

My son is NOT cured.  He still has autism.  We’re still in the ‘hood.  Lots of echolalia, misuse of pronouns, need for proprioceptive input, yelling at times, self-talk, confusion about when to use the toilet…  It goes on.  But when he talks now, he makes so much more sense.  He says or does something new every single day.

Yesterday, I was doing laundry and went to the other side of the house.  He stayed in the bedroom.  While I was loading clothes, I could hear him yelling, “Mom?”  “MOMMY?!”  and I yelled back that I was in the laundry room.  He kept yelling “Mommy?” as he walked closer and closer.  When he came in the laundry room, he looked at me, and said, “That was far, long to come, Mommy.”

In so many ways, kid.  In so many ways.

I cannot emphasize the importance of checking your child for seizure activity.  I’ve said it before and I’ll say it again.  We had no idea my son had seizures.  He showed absolutely no outward signs of a “seizure” in its classic sense.  Dr. Chez’s book notes that over 60 percent of autistic children suffer seizures in their sleep.  My son is part of this 60 percent.   

Don’t just think about it!  A 24 hour ambulatory EEG can make a world of difference to your child.  Just because you don’t have that medical degree – DO NOT BE INTIMIDATED if the doctor says it’s not needed!  We’re all warriors – demand it!  It might make a world of difference to you too.  


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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28 Responses to Superhero Results.

  1. Kelly Hafer says:

    Hey Karen. Wow. I am so very thrilled for you.I am so thankful that you blog and share these things with fellow autie parents. While we have not had the 24 hour EEG, there was sufficient reason for us to go on Depakote. For one reason, it is empirically measurable in the blood stream. For another, well, we have gone down many medication “roads.” For us, Depakote has worked miracles. I do not say that lightly. I second your advice and encourage everyone to fight for EEG testing. As well, to fight for the opportunity to try “anything” that you think may help your child(ren).

    • solodialogue says:

      And likewise, Kelly, my friend, I am so happy for you and Ted!! Depakote has been both of our sons’ best medication! It’s so weird that we both posted about it today. And I remember being scared of having to take Tootles for blood draws when I learned about it for Depakote – but really, in the scheme of things, it’s 30 seconds of yelling for a world of difference.

  2. Monica says:

    Such uplifting & encouraging news! Thank you for sharing with us, Karen. 🙂

  3. Brian says:

    Awesome. Encouragement for us!!!

  4. blogginglily says:

    Very cool. Great performance out of Toodles!

    I have yet to crack open his book, I still have Wit and Wisdom, TPGA, and Autism’s False Prophets to finish. . .

  5. YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I’m so, so happy for you, Tootles, and everyone else involved.

    And also thankful that you have shared your story… our son’s EEG is scheduled for the 26th! I’ve been spreading the word about autism and the possibility of undiagnosed seizures to all of the autism moms from his class.

  6. What wonderful news! Having followed along with you since almost the beginning, I can see a difference in T just from your posts. I think it’s wonderful that the difference is is actually measurable and holy hell is it significant!

    We just titered Little Miss’s seizure medications over the weekend, so I’m not feeling exceptionally hopeful about the benefits of them at this point. Maybe it would have been easier before the hour-long screaming fit in the car, but I digress. Like the last round, I’m sure it’s just a matter of when her body gets used to them… but until then? Mommy’s gonna need to stock up on wine.

    Keep fighting the good fight and encourage all those mamas and daddies out there to get that EEG. It can make all the difference!

    • solodialogue says:

      Oh Karla! The scream-fest happened at our house too when Toots first started the Depakote. The way Dr. Chez put it was that he was receiving so much more input that was getting stalled in processing (traffic jam). Maybe that’s what is happening with LM. T was put on a second med to help that processing called Namenda which is an Alzheimer’s drug. Once he started taking that the scream-fest slowed down to a manageable dose. I hope that info might help you both! xoxo

  7. Lizbeth says:

    Good news Karen, good news!!!!!!!!!!!!!
    I am so happy for you guys. So happy!

  8. autismangel says:

    Karen that is awesome news!!! We have also seen such hope with Trileptal and Dylans Epilepsy. Not a cureall like you said and as you know different circumstances (health situations) but same concept with the seizures; your message is so right!! SO happy for your progress and your incredible dr.! 🙂 keep up the hard work mama! (your baby too!! 🙂 xo

    • solodialogue says:

      Yay for Dylan! I’m equally as happy for you. Thanks Shelly! Seizures were the last thing on my mind with Tootles but the reality showed up with that EEG and knowing and using appropriate medication has made a world of difference. We are very grateful to Dr. Chez! Mama warriors unite! 🙂

  9. Lisa says:

    What amazing news! Tootles is really blossoming!

    I second the EEG to check for seizures. Tate didn’t have any seizure activity, but at least we had testing done to prove it. It was not fun, but gave us piece of mind…

  10. Lana Rush says:

    OK Karen – First of all, I am absolutely THRILLED at T’s progress! How wonderful! Exciting! Marvelous! Fantastic! And all those other great adjectives! How amazing to see so much improvement in such a short time! So happy for you and T!
    Second of all, I’m getting the book (by Dr. Chez) and I’m asking Dr. Goldberg about doing an EEG. You have completely convinced me that this is definitely something we need to look into for the Bird.

    • solodialogue says:

      Thank you so much Lana! You have brought tears to my eyes with your decision to pursue this for your Lily! I will pray twice as hard for her, my dear. I want you to hear those words soon! xoxo

  11. I always hated looking at those numbers and don’t feel like they did any good, only scared me silly. So happy you guys are finding joy!

  12. jentroester says:

    Wow, how awesome that there has been such improvement. Our neuro has turned us down twice when we requested seizure testing b/c K has had no outward signs. I even told her about you and about another friend I had who found out her son had seizure activity without any signs, but she was unmoved. I need to get this book and then show it to her, I think…I mean, seriously, it’s not an invasive procedure…hopefully I can get her to see the light.

    • solodialogue says:

      This just rips at my heart. I feel so blessed to be so close to such an amazingly understanding neuro like Dr. Chez. If there is anything I can do on my end, I would be happy to ask Dr. Chez for some help if you want. Just let me know. You should be able to get the testing, if for no other reason than to rule out the seizures. I hope you can get her convinced. I’ll email you some info tomorrow. xo

  13. eof737 says:

    Good news and more to come as the weeks and months tick by… Happy for you k! 🙂

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