Thursday, June 18, 2009

Finding Kyan

There is much about Autism that feels like a battle. Like I am nose to nose with an enemy that I must defeat. It is hard some days to remember that beneath that enemy is a precious child that I am desperate to find. Kyan is in there, beneath the screaming and obsessive-compulsiveness, beneath the tantrums and inflexibility. He's in there. He is bright and loving...and trapped. That act of finding, of discovering is a lot like pulling back the layers of an onion. It is like this physiologically as we get through one physical hurdle only to discover a new (to our awareness, though not to existance) issue to deal with. Most days those physical issues seem like endless layers that we will never get to the bottom of. But then there are days like the ones we've had lately when I actually believe that the light I am seeing at the end of this long dark tunnel is indeed the sun, and not a train.

The kids started a supplement called Enhansa. Enhansa is known in Autism communities to create AWFUL die-off experiences, also known as Herxheimer Reaction. I should clarify that die-off is never pleasant so when an experienced Autism-parent says repeatedly that the die-off is awful, and then the doctor mentions the die-off 3 separate times while giving the prescription, I know to brace myself.

I don't think I was prepared enough though. WOWSA! Bad behaviors, stimming, repeating, screaming, tantrums. I just wanted to jump off a bridge. Kyan decided he was suddenly terrified of swim lessons and regressed back to screaming the entire time or not getting in at all, even though he would swim at barb's house beautifully. It was nuts. All 3 were having issues. Poop galore. All of this is 'normal' & 'expected' but decidedly NOT fun for mommy. The way Enhansa works, you keep bumping up the dose every week. So we pressed on through the misery knowing (HOPING) there would be a payoff eventually. After each dose bump, we saw more die-off, but we kept going. Finally a little over 2 weeks ago, Kyan started to have a burst in his language. He was responding more consistently to questions and requests. And he was MUCH more calm. Unfortunately, all of the viral die-off from Enhansa has been known to cause a yeast surge in little bodies. This happened to Kyan. He had the worst yeast infection I have ever seen. BRIGHT red all over his diaper area, and we could not get it resolved. I added grapefruit seed extract, tripled his probiotic dose, gave vinegar baths, applied tea tree oil to the area, applied topical nystatin, and OTC anti-fungal creams (separate occasions), AND he was taking Nystatin by mouth 3 times per day, and had been for 2 motnhs. I seriously do NOT understand how this child could have any yeast in his little body, much less SO much, like he did. Dr.Bernui says the skin is the window to the inside, so if it is inflamed, there is something going on inside too. YEAST! Finally after changing Kyan to Diflucan, keeping the GSE, continuing the topical anti-fungal cream, along with maintaining the dose of Enhansa, rather than bumping up, the rash is almost gone at 3 weeks. Poor baby. Through all of that, I never got kicked during a diaper change. Can you believe it? The one time he probably really wanted to. In addition, he started talking like crazy.

Last night he said the following to me: "Mommy, I want my special book." I said "Ok. Where is it?" Kyan-"It's upstairs. Come on! Let's go get it!" I say ok and stand. He runs up the stairs. Then I hear "Look what you found! It's special book!" and then the pitter patter of his little feet running down the hall to the stairs where I was waiting. "Look, Mommy. It's special book!".

In addition to wrangling yeast, we have added Glutathione topical cream to the regimen. Based on the research I have read, I believe this will benefit all 3 greatly. So far, I truly believe it is contributing to Kyan's more mellow state of being.
For the first time, in a long time, I feel hopeful for Kyan. There have been many, many days along the way when I have wondered if we have finally hit the wall...if perhaps this is the jumping off point where I should consider that we just may have to accept this diagnosis as final. For now, that doesn't appear to be the case and I am happy to keep plugging along.
In all of this plugging, in the midst of all of the medicine, dietary interventions, supplements and therapies, I want to be clear that I believe strongly that God's hand is in all of this. I try to picture us as the friends in the Luke 5: 17-26 story. Jesus doesn't need us to climb up on that roof, cut the hole, and lower our children to him in order to heal them. He can blink and it will be done. But maybe all of this climbing, and lifting and cutting and lowering is as much for our own faith as it is for our children's healing. Perhaps God is peeling our layers too.


All About the Bailey's said...

love this post!

Mindy said...

I'm so happy you guys are seeing results with Kyan. I know it just makes your heart sing to hear him conversing with you.

Tracey said...

While He was healing my children, He healed me. I truly believe this. God is peeling our layers and teaching us so much. Autism will bring you to your knees and I believe that is where He wants us. In a way, I am glad. My eyes are more open and I appreciate every little milestone. God is merciful and good. He doesn't leave us where we are, He makes us grow. Another painful experience but it forces us to appreciate the simple things in life. Hang in there, you give me strength!