Kaelyn | Biomedical Intervention of Kaelyn

Update August 14, 2008

“As some of you know… Kaelyn has many symptoms of Autism. She does strange hand gestures, arm flapping, has an obsession with “sameness”, lack of eye contact and limited affection, decreased sensitivity to pain.  The biggest is that she is 2 and a half and was only able to speak about 8 words on a regular basis.(mamma, daddy, cup, juice, shit (I KNOW) and she could count 1-4, with YEAH being 5)  Most of these symptoms she had only to a limited extent, but they were present.  She has not been diagnosed with Autism, though her doctor has told us that she needs the testing and will be in speech therapy.”

That was Kaelyn a little over 6 months ago.
Kaelyn NOW is a little bit different…..

She can count to 20, though the teens don’t sound quite right and Twenty is VERY FIRMLY-   NI! (we have tried to repeat Twenty and she is quite certain it is NOT Twenty and is, in fact,  NI (knee).)

She makes AMAZING eye contact, looks us directly in the eye, for proper periods of time, even when not prompted.

Her obsession with “sameness” has moved to an appropriate level of preference.  Where she once REFUSED a sippy cup that was just a different shade than the previous one… she will now drink out of whatever is offered.  If the toy/leaf/stick/piece of paper she was playing breaks or tears, she no longer has a 30 minute mental breakdown. She gets a little pissed, but is able to express that and move on with little assistance.

She is no longer immune to pain. This is my least favorite progress   When she gets hurt, we know.  She is VERY clear about expressing what hurts, even though does not yet SPEAK.  If she pinched a finger, she shows me by squeezing her fingers together.  In fact, she has become a bit of a drama queen when it comes to pain…. and I just don’t know where she gets it

Her vocabulary multiplies by the day. I can’t account for all the words she HAS spoken.  Though she still does not speak in sentences, she communicates what she wants and needs really well. She walks over to the fridge and says “Cheese” and is not patient about waiting for cheese. She is a cheesaholic. (So am I.) Literally though, every single day she says new things and shocks the hell out of us. You’d think we’d be used to it, but no…

Her “receptive” skills are almost perfect.  It used to seem as though she could not hear anything we said.  Simple commands such as “come here” were useless.  She had to be physically prompted to do everything.   Now, I can say “Come to Mommy” and she runs into my arms.  When I want to change her diaper I say “Clean butt” and she comes running and plops herself down in front of me all ready to be changed.  When we talk going to the store  she gets her little pink crocs out and tries to put them on, heads for the door and waves “BYE!!, bye BYE” over and over. (THIS is so cute) She also says “BYE!!” with her little wave whenever anyone leaves.

And the VERY VERY best part of her progress… she has become a little love bug!!!  She gives hugs without being asked… she gives kisses and more kisses and grabs right a hold of my face, looks me right in the eyes and kisses me.  I still long to hear her SAY “I love you Mommy”, but I now understand that even if she never said those words, I can hear them in that look.  She is so happy, so loving, just plain fun to be around.  She wants us involved in a lot of what she does. She still has times when she prefers to play alone, but often she wants us with her.  She likes to sit beside us on the couch and watch her TV shows. (used to be Wiggles and Mickey Mouse and is now Dora, Phineas and Ferb, Suite Life and Spongebob). She cuddles. She holds hands.  All around, she has become a completely different child in regards to displaying affection and showing us her love.  I didn’t realize just how amazing just lying on the couch and holding her for hours was. I didn’t know because I had never been able to do it. Now I do it whenever I can.

Kaelyn accomplished almost all of these things on her own, with only the help of the gluten free diet.  We have just gotten Child Development involved.  She has Speech and an observer come every week and we also have meetings with the people from the 3 year old program to get her placed in a school setting of some type this fall.  This will be GREAT for her, to interact with other children like her, a less stressful environment than a place where she is expected to understand and respond to everything.  This is ongoing and several times a week we are either at CDS with Kae or they are here, working with her.   Her first goal was to respond to her name 3 out of 5 times. She does it every time now. (Unless she is REALLY into something, then about the 3rd time I say her name, she gives me a dirty look.)

Ok, so that’s catching you all up on THAT aspect of it… there is a bit more.   This is an effing long blog and I apologize for that… I say,  read it in parts. That was part one (the long part   here is part two… her doctor’s appointment today…..

We thought maybe her hearing was playing a role in that most of what she says sounds a bit off.  Her ear drums are fine, however, we weren’t able to get a hearing test done, because she will not indicate if she heard the noise or not AND she wasn’t about the headphones. This will have to wait.
I have been watching videos of children with Autism and saw something in one that made me stop short- a boy squeezing his eyes shut and holding still for a moment.. and then shaking it off.  I have seen this in Kae countless times… It is considered “seizure activity”.  She is not HAVING a seizure, but it is enough to interrupt her brain patterns and scatter her thoughts, amplifying the Autistic symptoms.  Again, she is too young for a proper EKG, so we are watching and waiting on this one… and I am not that concerned about it. We don’t think she will actually have one. (fingers crossed)
The dr. was VERY impressed with her progress. She waited outside the room for a few minutes before coming in, knowing Kae is different for her than for us.. and she heard Kae count to ten and go YAY!!! and clap.. Dr busted in and said “I heard that!! I heard her counting and praise herself!!”
We are all so impressed with Kaelyn…

Now the last bit, which is a bit intense and the beginning of a new trial and error.  One I am NOT looking forward too ONE BIT.
From all the research I have done (A LOT), I have run across children whose Autism is similar to Kaelyn’s and the gluten free diet worked well for most of them. So did “anti-fungal” treatment. Diflucan and probiotics.  Getting rid of the build up of yeast in thier bodies.   From the start, we considered this.. and now we are about to try it.  The Dr. is behind us 100% and excited for the results.  If this is the right thing for her, the next couple weeks will not be pretty.  She will experience a “die-off” of the yeast in her body and it will be expelled. (A little like when she stopped gluten, only A LOT worse).  The word “spew” was used to descibe what happens a few times.  From what I have read, I picture her vomiting and pooing a brownish foam. Yeast freakin everywhere.  This should last a couple weeks.  I don’t think it will be a good couple weeks at all.  I am actually TERRIFIED of this. We are about to make our little girl pretty effing sick.  But in the children it worked for, as they spewed, they spoke in full sentences, as if the yeast leaving freed them.  *This is all ONLY if it works*  If it doesn’t…. nothing will happen and we will know within a couple days of her starting the treatment if it works.  If it doesn’t work… there are other treatments that have been successful for children.. and I will try every single one, until I find THE ONE or ones.  We will always stay Gluten Free, I SWEAR BY IT.  But there is still more we can do, I know it.

OK. So that’s where we stand right now.  She will be placed in a preschool this fall with children who also have disabilities.  She will have Speech and OT.
And maybe, just maybe.. this treatment will work and break that last piece of the puzzle that is holding her in. I think that’s all that’s left now.. just that one piece.
The doctor said we will never CURE Kaelyn’s Autism.  I respectfully disagreed.  She is a wonderfully open-minded lady, but apparently not open enough.    Maybe one day in the future Kaelyn will prove her wrong.
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Here is the video that helped me realized what she was doing with her eyes and finally gave us the courage to try the anti-fungal treatment…..<< link missing >>