Monday, November 17, 2008

Update for 11/17/08

Kaylee is closing in on 10 days of full strength Diflucan and boy are we all feeling it. Even her teachers (on day 8) at school have called to say that they were having trouble with her too. The main problem is excessive tiredness and lots of tantruming from transitioning. For instance, in church yesterday she decided that she didn't want to go home and threw herself on the ground screaming at the top of her lungs in front of everybody. Lovely!

I was a bit embarrased to say the least, but most of the people in our church know and understand that Kaylee is going through a hard time right now and they are very supportive.

Also a bit of some "spaciness", but even in her bad die-off stage, she is still better than before we started the NIDS protocol! How bout that?

I have decided to temporarily suspend potty training until this time is over, why make things so hard on myself? Right now things are very tiring for all of us as we deal with Kaylee's irritability.

Kaylee hasn't regressed cognitively, even though she is in die-off stage right now. Let me go over some of the strides she has made thus far:
  • Kaylee is brighter now, she pays attention to me the first time I say something and obeys!
  • She no longer wakes up in the middle of the night, sleeps much better and longer.
  • She answers some questions instead of just repeating back answers to us.
  • Now she puts on her own shoes and attempts to dress herself.
  • When not in a die-off stage, she no longer has any trouble with transitioning
  • Kaylee has much more eye-contact and interaction
  • and most wonderfully, she asks for hugs and kisses now!

I must give credit to the One who lead us to where we are today, who heard our prayers and answered them, even though He didn't have to. Thank you, Father God for being mindful of us.


Thursday, November 13, 2008

Autism 101 - Autism for Dummies

Finding out your child has autism is scary and the information you have to sift through is overwhelming (wow, that word is an understatement!) and daunting. In a short period of time you need to take life's crash course in what autism actually is...then the onslaught of medical, therapeutic, financial, legal information can make your head spin.

First, let me tell you that you should take a breath and let it out. You WILL know what to do and soon, and you will get through this. Give yourself time to digest the information. Don't be hard on yourself!

There is a grieving process you go through, too, but that is a whole other topic that is for another time. But it's critical to know that you can't wallow in your grief and depression for long, your child is depending on you! Now is the time to start taking action. The clock is ticking, and while it's important to weigh all of your options, it is also important to wisely and prayerfully make your decisions.

If you have a child with autism (or any other special need), God has entrusted you with a child who is special and needs you. God will help you and give you strength and wisdom if you ask Him. God loves your child even more than you do and He will be your very present help.

Most of the time, the doctor who diagnosed your child with autism will not give you much hope or help. They will most likely send you on your way and you will feel lost. But don't give up hope! What a blessing we have with the internet! So many people sharing information quickly.

Here are some tips:

1. Beware of charlatans! There are many people out there that say "this supplement cured my child", but they want to make a quick buck off of desperate parents. Don't buy anything until you ask around about it. I have saved a lot of money just asking around people I trust (I call them my "e-friends") Chances are...if it sounds too good to be true, it probably is.

2. Get into a good Yahoo Group about autism (maybe one in your state or just one that focuses on curing autism). This is how you make "e-friends". I know this has been so instrumental for me, I learned so much from other seasoned moms and I had a lot of support. It was so refreshing for me to not feel so alone.

3. Educate yourself! Read some good books not just about "curing" autism but also how to live with it! I will give book recommendations on another post that were instrumental for me.

This is not by any means an exhaustive list of things you should do, but it's a start.

Sunday, November 9, 2008

A Word I Never Want to Hear in Heaven...

What a relief it will be one day when this fight is over...when our children won't be subjected to vaccinations that hurt them and make them retreat into their own world. It hurts me inside to think of how many more children will be afflicted with autism. While our leaders ignore this ever-growing, ever debilitating issue that plagues this generation of families. While doctors turn their heads to the growing evidence of the link between autism and vaccinations.

It will be too soon when I am in heaven and I hope to never hear the word autism again.

Kaylee's Story - Part 3

Before I begin the next part of Kaylee's story, I must say that this is my story, too. Right now, Kaylee can't tell her story, but I pray that one day she will be able.

My purpose for telling Kaylee's story is not for my benefit, or for some catharsis on my part to make me feel better or self-important. I hope and pray with my heart that I can help someone out there, any other mother finds themselves on this road, too.

Because every book I read about autism made me despair even more. Everything was about cures and spending lots of money I didn't have and no guarantees. No one ever addressed with the real issues I had to deal with everyday, like depression, despair, the alienation from others, the embarrassments I went through.

When I started to suspect something wasn't right with Kaylee, she was 15 months old, I felt so alone. My friends' kids were all talking, playing, and interacting. At church I was embarrassed when she would scream if people came up to us wanting to talk to her. She would look right past them as spoke to her. I was afraid that people would think I was allowing my child to be a unsociable "brat".

I was alarmed and I looked up "15 month old not talking" on the internet and I found a case study of a little girl was was waving "bye" at 12 months saying a few words and lost them. That was Kaylee! Then I saw autism and I felt a stab of horror into my heart. I never though of autism. I used to babysit a boy with autism and all he did was play with string all day and walk on his tip toes. He was 8 years old and had never spoken. "That can't be Kaylee", I tried to reassure myself, but the damage was done. Now I suspected autism and I was scared. As far as I knew, there was nothing I could do about autism.

Kaylee was evaluated by the Early Intervention people soon thereafter and she had more than 40% delays in many developmental areas. When I asked the evaluators if they though she had autism, I could see in their eyes "yes" but instead they told me "it's too early to tell".

We had therapists coming to our home at least everyday. Kaylee started to interact more and we worked hard to teach her sign language and get her to communicate her wants and needs. From 16 months on, I waited and waited for her to speak. I wondered if I would ever hear her voice, if I would ever hear her say "Momma" or "I love you". I so desperately wanted to bring her into our world, so I worked hard to get into hers. I played with her for hours on the floor, read books, sang songs, and tried to find ways to get her to smile at me for anything.

One night I was crying to my husband, afraid she would never speak, and pointed me to this bible verse:

And the LORD said unto him, Who hath made man's mouth? or who maketh the dumb, or deaf, or the seeing, or the blind? have not I the LORD? Exodus 4:11

God could do help Kaylee speak if He willed it. Somehow, knowing all of this is was in God's hands put my mind at ease. I knew that God loved me and He loved Kaylee and He thought this way was best. I had peace again. Even though my heart was grieved I could live with this knowing God was in control.

Thursday, November 6, 2008

Update for 11/7/08

Last week after I spoke with Dr. Russell (by phone appointments now, he is in Texas) we began the anti-fungal phase (Diflucan) of Kaylee's protocol. Today is day 8 and the one major improvement so far is that Kaylee's mushy stools are totally GONE. We were struggling with that again after the anti-viral was introduced and even though she was on the GF/CF diet and probiotic supplementation we saw little improvement. We believe that the use of the antiviral caused the yeast in Kaylee's digestive system to become opportunistic and proliferate at a faster rate, therefore causing the mushy (and stinky!!!) stools.

And it was exactly as Dr. Russell predicted, he told me the antifungal would fix it and it did! So it is safe to deduce that Kaylee did in fact, have a yeast problem in her gut that a low sugar diet did not correct.

Kaylee's sleep is still pretty good, however, she is having some hyperactivity, and I believe this is the beginning of her "die-off" stage. I think we are going to see some irritability again for a few weeks. Being prepared helps me deal with it!

So today, Kaylee is still on Valtrex, and now Veramyst (for allergies) and Diflucan.

That's all for now folks!
-Jennie