Autism and Happily Ever After – Part II

The old princess was quite disappointed and sad that the trusted pediatrician had failed to send her young boy to the sage immediately upon the diagnosis.  But rather than beheading the trusted pediatrician, the old princess showed compassion and gratitude.  After all, the trusted pediatrician had saved the boy’s life when he was just an infant and was not eating.

 The old princess traveled with the boy and his trusted tutor to the sage high on the hill.  When they arrived, they were impressed by the size of the building. It had a scientific label “Neuroscience Center”.  Inside many, many people were very busy.  Directions were given to the old princess, the boy and the tutor to wait by the fish tank near the stars and moons on the door.  They did.

Eventually, they went through the door.  The boy was weighed.  49.6 pounds.  He was measured, 46 and 3/4 inches tall.  They were sent to a room with a 9 on it.  A nurse came in and took a long and detailed history of the boy.  She asked what the old princess hoped to accomplish.

Stumped, the old princess was speechless.  What did she hope for?  If she said a cure, she knew she would be viewed as ignorant or oblivious to reality.  But she really wanted to say “a cure”.  Instead, she said she wanted to make her boy the best that he could be.  As soon as she said it, she felt she had failed the boy, as though she was making some ridiculous admission that he was less than perfect.  Perhaps, he was in the eyes of others, but not in his mama’s eyes.

It was as though with that simple question, the illusions she had created with “alternatives” like hyperbaric oxygen chambers, shattered at her feet and she was left facing something she did not want to face – reality.

Her little boy has an incurable disability.  The old princess had to realize she was just a mom.  She did not live in a fairy tale land.  Autism has no cure.  There are ways to cope with the disability.  There are ways to lessen the symptoms.  There are no hyperbaric oxygen chambers, no B12 shots,  and no transcranial magnetic stimulation that will cure autism.  She was staring back into the forest.

The wise sage walked in the room.  Despite feeling as though she would fall back into the midst of the forest, the old princess listened.  Disheartened, she heard him say that there is no evidence that any of these alternatives work.  He told her of charlatans and snake oil salesmen wanting to promise cures to extort money.

The old princess listened as he told her about how the ugly concept of “politics” comes into play, even in the field of autism.  She learned that respected leaders sometimes say things work to fuel hope to people who hold donation money.  Respected leaders who have to raise funds to do research or keep a facility operational will tell vulnerable people who want to believe in “alternatives” what they want to hear to garner donations to keep real research and real treatments alive.

She was saddened to hear what she knew in her heart.  She was sad to face it.  She wanted to turn away from reality.  Turn away from the reality of no cures – no fairy tales.  Then came the anger.

The old girl was angry that not a single soul who had contact with the little royal from the time he was diagnosed to four months ago told her of the existence of the sage.  People have traveled to this facility from as far away as Europe for the chance to meet with the sage.  The sage has written this book called Autism and its Medical Management.   Yet, the old princess and the little royal were within the same kingdom and no one told them to go see the sage…

Next came the good…

There are tests that must be run that serve as a foundation from which the many, many variants of causes for the autism can be narrowed.  Treatments will depend upon the findings of those tests.  First comes the EEG to rule out seizure that may occur during sleep or which can be auditory in nature.

Yes, auditory.  No one has ever asked the little royal to take an EEG.  The sage told the old princess that the sleep disturbances the boy had from birth to age 2.5 when diagnosed with asthma may have been seizure activity.  At the time the boy was treated for pneumonia at age 2.5 and diagnosed with asthma he was given prednisone.  Prednisone is also used to treat seizure activity and could have been instrumental in stopping that activity and allowing the boy to sleep.  The EEG will provide more information.  Seizure activity can appear as “spaced out” or staring episodes combined with a perception that the child is not listening.

Next, we discussed genetic testing.  I never understood the basis for undergoing the genetic testing nor did anyone else ever explain how it would help the little royal.  The website for Sutter Autism Medical Treatment Center provides the answer this way:

“Since other medical conditions or problems may mimic or add to severity of autistic features, the child neurologist can help evaluate a child for these issues and better determine if a regression has occurred. The other conditions may include genetic disorders that may have some autistic type behaviors, other learning or language issues, underlying brain injury or epilepsy, and sleep issues. Appropriate medical screening can then allow more appropriate medical diagnosis and treatment to begin so better therapy and outcome goals can be attained.”

Altogether, the appointment with the sage gave the old princess hope.  He knew things without asking. He provided hope in the form of conventional medicine and realistic treatments that can give the little royal the best world he can have without a fairy tale.

Yes, that “old princess” was me.

I finally feel like we are on the path that will lead us out of the deep forest and into the light.  We have some work to do.  I have no idea how much screaming the little royal will do when his blood is drawn.  I have no idea how hard he will struggle to remove the EEG electrodes that will be placed on him to remain for 24 hours.  I do not know what the results will yield or where were are headed.  I do know now, it’s the right direction.  Finally. Maybe there can still be a happily ever after, even without the fairy tale.

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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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22 Responses to Autism and Happily Ever After – Part II

  1. Well, that’s a lot to take in. One thing we did learn from the crappy neurologist that did a 180 on us a few weeks ago (http://beyondthedryervent.blogspot.com/2011/08/doctor-shoppin.html) is that the presence of seizures is more likely in children with autism. I found that really interesting because one of the issues found in Little Miss’s MRI (malformed hippocampus) makes her specifically more likely to have seizures… it’s a coincidence I’ve been trying to track down on my own since all the neurologists here suck big donkey butt. Sigh. I wonder how much it would cost us to fly out and see your sage.

    I also think the genetic testing is a great idea. We had the same testing performed on Little Miss when we did the MRI. While we did not get anything new in the results, we were able to rule out conditions like fragile X (which can have similar symptoms to autism and increase autistic behaviors).

    I wish you the best on this journey and want you to know that we’ll be here for you if you want to chat about it along the way! Good luck **raises coffee cup to the sunshine on the other side of the dark forest**

    • solodialogue says:

      When you are ready to fly out and see our sage, you will stay with us and we shall do lots of fun tourist-y things – you know I’m only an hour and a half from Napa Valley… and a few hours from San Francisco… Wouldn’t that be great to have Little Miss and T in the same photo?!

      Fragile X is also being ruled out here. The sage does not feel T has it but he is concerned about a number of other genetic bases that have appeared with regularity in autism although it is clear that autism is such a huge umbrella under which so many of us fall. If I understood correctly, the more he knows about the bases, the easier it is to focus treatment and make a difference. Next week – we have the EEG attached for 24 hours?! I hope we make it without him pulling it all off!

  2. Jackie says:

    Good luck, sounds like your finally on the right track.. if only I could afford to work out what the root of mine was.. maybe one day. Sleeping issues are just something I’ve learned to live with among other things long before I knew what or why I was different.

    • solodialogue says:

      You should ask for the EEG – you never know whether you may find some answers my dear. 🙂

      • Jackie says:

        I am very very tempted, considering the incident I had at work the other day.. No one actually saw what happened, but I lost 10 min of time while on tea break, and came back very late with no clue that I was or that they had called for me three times over the PA. Not cool!

      • solodialogue says:

        That is very scary!! Be careful, please. I hate to think of you driving like that!

  3. Melissa says:

    I’m glad you’re on the right path. Sounds like we have a lot in common… we just had similar testing done with my daughter, who is younger, so it was done under sedation. Ideally it would have been the 24 hour video monitored one, but our doctor didn’t feel it would have worked, given her … maybe in another year or two. I hope all works out well for you.

    • solodialogue says:

      Oh, I would be so interested to know how your testing came out! Please let me know what your results were. I will be sharing the upcoming EEG here and I’m talking about it in tomorrow’s post! Sedation for both him and me at this point – would be good…;) (just kidding).

      • Melissa says:

        Is there a way we can message? I’m totally open to having the conversation – and we’re still going through it – so I could probably use it too….

      • solodialogue says:

        Sent you an email! Would love to hear about any advice, tips, or info and you are always welcome to share it here as well! Thanks for the offer and yes- if there is anything I can offer to help, I’m always here! (well- mostly always)

      • Melissa says:

        MRI was fine – so no structural problems, which is great. EEG – mild irregularity in the frontal lobe… Her neurologist is NOT diagnosing it as seizures as yet. However we are keeping an eye on it. She is also hesitant to medicate. 1) because she is 3.5 2)because once you’re committing to meds, you’re committing to meds 3) because it’s not inhibiting her learning. Now, I have to say, I’m grateful for this attitude because I KNOW the side effects of most of those medications personally, having taken them.

        That said, not hiding under a rock.. neurologist already told me about the incidence of seizure disorders on the spectrum. And her family history increases that chance for her.

        My husband’s attitude? We know her brain is irregular, she’s autistic… for now we go on doing what we’re doing.

      • solodialogue says:

        Your daughter is younger now than my son was when diagnosed (he was 3 years 10 months when diagnosed). I’m glad there is no diagnosis of seizures for you as of now (knock on wood) and it’s great that it is not inhibiting her learning. T is having some difficulty focusing and paying attention in school now that he’s started kindergarten. He listens and absorbs what is going on but from an observing point he does not look nor act like he is paying any attention at all so it could be behavioral and I strongly suspect that is it. But it only makes sense to rule out the seizures. I don’t know anything at all about the meds yet- just that they are available… so all information you share is valuable! Thank you so much for sharing here!

  4. Broot says:

    I’ll cross all my fingers that Tootles will be able to handle the blood draw and the electrodes for you!! I like the sound of this doctor. 🙂

  5. Lizbeth says:

    He’ll handle the testing just fine–because he has his momma watching out for him, making sure everything will be all right in his little world. And if that doesn’t work I bribe my little prince with a trip to Dairy Queen. Works like a charm. Every Time. 😉

  6. Thank you for the link to the book!! I can’t wait for it to get here!! Also, thank you for that story, especially the second part which has acted as the kick up the butt I needed to finish organizing an EEG for my son. It’s been on my to do list for far too long. He also had genetic testing which traumatized him (total change in him from one day to the next because of how incompetent the nurses doing it were **grrr**) and we have no results to show for it since the medical team lost the results. That happened a year ago and it still makes me so so angry I can barely think about it cause mean old ulcers start bubbling up inside… Angry doesn’t begin to cover it actually… But anyway, let’s not get trapped in a dark place… **ahem, smooths out clothes**

    • solodialogue says:

      You are so welcome for the link! I, too, am looking forward to getting the book and learning more. Tomorrow – I’m focusing on the whole EEG procedure which happens for us next week- very nervous about the whole thing. SO sorry to hear about the incompetence of the nurse who did the genetic testing (blood draw, right?) That would make me very angry also!! It’s so hard once they’ve been traumatized to get them the testing and help because it is a lot harder once they realize what is coming… ***Hugs***

  7. Flannery says:

    I’m really glad you had your appointment and are headed in the right direction. It’s awful that it took so long, and not a single soul mentioned this doctor. I wish I could say I was surprised, but I’m not. It seems to be a common theme among people in this field that they don’t share resources.

    I’ll be interested to hear about the results and recommended treatment. Glad to see you back!

    • solodialogue says:

      Thanks my dear! Good to be back! We should give lectures to these docs so they can feel what we go through as parents just receiving the diagnosis. They really need to share every possible tool with us at the earliest possible time!!

  8. ElizOF says:

    You are always in my prayers … I know the lights will continue to shine brightly and guide you to the right place… Keep the faith. 🙂

  9. Kelly Hafer says:

    Your Highness, sometimes the road is long, winding and filled with road apples, isn’t it? I am so glad you are doing the EEG to rule out seizures (or confirm – but at least you would know then, right?). We did two EEGs, but they were for an hour or so each. No way was Ted going to sleep with those electrodes on his gourd. The results were that there were definitely some issues, namely that the more information his brain receives, the SLOWER it actually processes. Makes a lot of sense, considering what we see daily. But, thankfully, we have no seizure activity. Our MRI was abnormal, but nothing that could be changed. Basically, for us, these medical tests just kind of confirmed the diagnosis. No new information, no new diagnoses, just more of the same ol’ same ol’: “Well, your son presents as a really unique case.” No. He is my son. Not a case. **sigh**

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