Update for 12/30

Hope ya'll had a Merry and Happy Christmas, we made it, some highs and lows...

Here's a picture of me and my girls, I am happy because at least 2 out of 3 are smiling!!!

For an update, Kaylee has been on Lexapro for a over a week and a half now, and Singulair for 2 and a half weeks, and I have some mixed reviews.

Singulair has taken care of her allergies now. No more night coughing and runny nose. That's good.

Now for the Lexapro, Kaylee is talking more, singing less (her singing was either stimming or boredom?) She is doing better about paying attention, answering questions, she is talking more and now she is less echolalic and actually learning from the Teach2Talk DVDs I bought her that teach her about her pronouns. I practice throughout the day "you" and "me", "his" and "hers" and more, and she is catching on but not all of the time. She is appropriately using "she" and "you" and "my" right now.

The cutest thing she has started doing is addressing people "Come on Momma, let's go..." and now she has decided to boss her little brother around at times like a any big sister should saying "Joey, no!".

It's difficult for me not to get discouraged, because her habits of speaking in the wrong way are ingrained. Kaylee seems to be used to thinking in a way that takes longer to learn. It is as if she speaks language visually and then converts it to an auditory language. Like Temple Grandin calls it: "thinking in pictures".

Something else has emerged in Kaylee, too. I am not sure if she is pretending or scripting, Kaylee is playing with her toys, but she repeats how she is taught to play with things. An example: "Hey, let's go for a ride" with her Little People in cars, but she's missing the creativity we see in most children.

It is overwhelming to think about how many things Kaylee has to learn, when I see Joey learning so easily, just by being exposed to things. How can I possibly teach her everything she needs to know, on top of what else she needs to learn?

On the bad side, Kaylee has been misbehaving like never before. She acts like a girl who needs a nap, but she can't take one. When we sit down to eat she can't sit still, she never used to be that way, all squirmy and wiggly. Yet she lays on the ground tired and sucking her fingers like she's tired.

During Kaylee's bad times, she leaves her momma in tears! She breaks down and gets very upset. She is uncooperative and defiant, and I get scared because I don't know how to handle it sometimes. I just try to stay calm and not back down. She's eatin' those green beans, darn it!

I had finally had it, so I called Dr. Russell's office this morning and to my chagrin, he answered the phone! He told me to stop the Lexapro for a week and rule out the Singulair as the problem.

Sigh, I was looking forward to the Lexapro since before we went to NY, because I knew that was the golden ticket, what really helps the kids. Guess it's more waiting for now...

The Good Shepherd

Since Kaylee's diagnosis in August of 2007, my life has been an emotional roller coaster. For a year after that I had been going through all of our options for treatment for her from diets to supplements and many more interventions. For so long I just didn't know what to do, there were so many promises everywhere I turned and nothing worked.

Especially today, I walk the line between elation and despair. Every few weeks a new medication comes along with die-offs and reactions and a little growth in some area. And each time I wait on pins and needles, watching for something, some confirmation that says I can can relax now, Kaylee is going to be OK from here on...I am waiting to get to really know her.

And when we have setbacks and die-offs, I fear. I grieve all over again as if it were the day I left the doctor's office with the word autism ringing in my ears.

I am so tired of this roller coaster. How does one hope with all of their heart so badly and not get disappointed? Is that possible? Or because I truly hope, is that just the heartbreaking risk I take?

That is one of the hardest parts of Kaylee's diagnosis I have had to deal with is not being able to just accept autism and move on. Because there is a question of recovery in these children a parent always wonders and hopes their child is that one child that can be helped...therefore delaying the "acceptance" stage.

My wondering has left me stuck in a wilderness of waiting. I always dreamed that Kaylee and I would have a close bond where we could talk about anything for hours, the way my mother and I did. Now I live in an up and down cycle of grief and hope: grief of the loss of a dream for my little girl, and hope that the dream is not gone.

I am so tired, a deep tired that reaches down to my soul. I haven't had peace in a long time. I have been waiting on the edge of my seat, wondering what the next act of this life will be: a road to recovery or time to start accepting. It's so tiring to wonder like that. I have just been surviving, missing many moments with all of my children because of my lack of joy.

Sometimes I wish I could just let go, stop fighting so hard with all that I have, but I am afraid...if I stop fighting for Kaylee, who will fight for her?

As I ask myself this, I close my eyes and I can see my Lord Jesus, He holds out his arms to me and asks "do you trust me?" Isn't that what this is all about? It always comes back to this point: Do I trust Him? He who stopped at nothing to save me from my sins? How could I not trust Him?

I see myself across from Him, holding Kaylee so close, clutching her so hard, afraid to let go. I am afraid if I do I will not get my dream. I am afraid if I let go, I won't get what I want: I want Kaylee to get better. I want to sing and laugh and share with her.

Kaylee is His child, I forget that sometimes. I pray as if I am pleading with God to help my child when He loves her so much. I don't love her anymore than He does. Jesus laid His life down for her, too. I need to trust Him and what He wants to do with His child.

I don't want to fight her Father's will her, I want to trust Him, no matter what. Every morning, I am going to give Kaylee, and my other children to Jesus. I am going to trust Him.




I am the good shepherd:
the good shepherd giveth
his life for the sheep. John 10:11

Terrible twos or autism?

Recently, I posted that Kaylee was having trouble with tantrums and transitioning, and I attributed it to her having autism. She says "no" when she means "yes" and goes back and forth and can't make a decision. She cries and protests when she can't have her way. She fights for her rights when someone takes her toys.

For many months, Kaylee was in her own world, unable to move forward in her social and cognitive development. Although she was growing physically (even that is arguable, before we adjusted her diet she was very thin and underweight, but today she is in the normal range for her weight) Kaylee was not growing socially, emotionally, and cognitively. Most days all she did was "stim" by chewing on her toys, spin in circles, eat her books, or line up her toys. If someone walked in the room, she never noticed. She really tried to avoid people, especially children.

Now I am going to digress a bit and give you some background, if you are interested. I have a friend in my area who has a son was diagnosed with autism and is the same age and close to the same level of development as Kaylee. She is the one who told me about NIDS and her son has been doing the NIDS Protocol a bit longer than Kaylee and he is responding well. But my friend was discouraged because of all of the behavioral problems she was experiencing with her son, all problems similar to mine with Kaylee.

She spoke with Dr. Russell this week about these issues and he told her to read up on typical 2 year old behavior. He explained that even though our kids are clearer, they missed time while they were stuck in their own world, and they still need to go through those developmental stages. He suggested that many of the problems we were experiencing were behavioral in nature and not greatly related to autism. One clue was that the tantrums weren't the typical autistic "meltdowns" that last a loooong time.

We officially lost Kaylee around 13 months of age, but I suspect she has been slowly getting better for a while now, especially when we changed her diet. Now that she is coming out of her own world, it is as if she is starting where she left off. Kaylee is 3 and a half years old, but she seems like she is just above my son developmentally, who is 21 months old. When I looked up "typical 2 year old behavior" on the Internet, it was like I was reading about Kaylee's struggles. Not being able to make decisions, short tantrums when she doesn't get her way, etc.

Kaylee still struggles with auditory processing, like understanding what people are saying, and echoing things she doesn't understand sometimes. But when she was evaluated we were told that she had the processing of a 2 year old. This seems to support the theory because she has the processing of a 2 year old, she is acting like a child who is 2 years old. It makes sense to me now! Looks like we may be going through the dreaded terrible twos a bit late.

This didn't occur to be a possibility to me before, because Kaylee is my first born and I am not really experienced in child development. And there's nothing like living with it, no education can replace real time experience. I had no idea what was to be expected.

All of this time I have been expecting Kaylee to be exactly where her peers were and sinking into a depression when I compared her to other typical children her age.

The truth is, Kaylee is stimming 95% less than she used to and she wants to play with other children, that's groundbreaking in my eyes! I am very encouraged and now I realize I was mistaken in thinking that Kaylee was going to be totally typical after biomedical intervention. I have had unrealistic expectations... This is going to take time for Kaylee to get better and learn how to act and communicate.

Soon I hope to have good updates concerning Kaylee since we will be giving her the Lexapro this week.

Take care and stay warm!
Jennie

The Next Phase

This morning I called Dr. Russell's office in Texas, and they told me I didn't have an appointment! I was ready to cry I was so disappointed, every morning this week I was waking up asking myself "is it Friday yet?"

Thankfully, they still worked me in for the appointment this morning (woo hoo!) and I spoke to Dr. Russell and he said he is very pleased with how Kaylee is doing. Kaylee's eosinophilic (a type of white blood cell that is involved with allergies) percentage is still a bit elevated and he said that he wants to address that with Singulair for her allergy symptoms, because the Zyrtec worked, but it makes her irritable.

A side note here: I did do a little "Zyrtec Experiment" this week, reintroducing it to Kaylee every other day, and I saw a difference in her behavior immediately. The next day, no more panic attack when putting on her shirt over her head. Yay! I am not sure why it makes such a bid difference, but it does.

Next week I will be starting Kaylee on Lexapro (a very very small dose, 1 mg a day) and I am really looking forward to that. Dr. Goldberg and Dr. Russell have said this is the major medication that makes a big difference in our children diagnosed with autism because it gets blood flow restored to the parts of the brain that are deprived.

Dr. Russell said he was encouraged and that we seem to be right on track with Kaylee's treatment. Kaylee is doing much better not only physically but cognitively, too. When I told the doctor that I was concerned about her reemerging anxiety, he told me that he sees that very often in our kiddos because they aren't always sure how to handle all of the new input into their world. Consequently, they react with fear at times. Dr. Russell reassured me that he believed the Lexapro would help with that, too.

It's true because Kaylee really is coming out and noticing the world around her. She addresses me "Great job, Mom!" and she wants to see what I am doing. She asks to help me cook dinner (tonight she shredded cheese and helped cook beef) and she tries to help me take care of Joey and Abbie!

I have a funny thing to share, actually...I was feeding Abbie her dinner and walked away to get a napkin to wipe her off and I came back and Kaylee took it upon herself to feed Abbie! I hurried up and tried to get it on camera:

This Story Has Stolen My Heart...

I just wanted to share this newspaper article I read about a lady who lives near Milwaukee, Wisconsin. She is looking for a family who will take in her grown son with autism and love him.

Aging mom seeks family to love her autistic son

May God bless you richly...
Jennie

Update for 12/3/08

Recently, I have been espousing how well Kaylee has been responding to the introduction of the NIDS Protocol, and it is true, but we have had some setbacks lately, which have been very discouraging, but I am determined to tell the whole truth and nothing but the truth on this blog!

While it is true that we have seen gains both cognitively and medically, lately Kaylee has been getting difficult again, with many crying spells and difficulty transitioning again. Also, Kaylee has been up at night coughing again with a runny nose for just over a week.

So while the other night I was beside myself with grief thinking we would never figure things out, I was ready to throw in the towel and accept defeat. However, once the clouds cleared up I realized these allergies may be the reason for the behavioral backslide.

Here is my theory: I believe that Kaylee's allergies are starting to surface because of the treatment. In September when we traveled to NY to see Dr. Russell, her bloodwork showed that she had definite environmental allergies but we never saw any signs of them. We were told it was because her immune system was so overtaxed that it couldn't respond with any allergic reactions. It could be that her immune system has had help with her viral infection that now it can attend to the allergies...and I have noticed that Kaylee did start these allergies again when we stopped giving her Zyrtec.

Next week I will be speaking again with Dr. Russell, in the meantime I will be doing a bit of an "experiment" to see if Kaylee's behavior and allergies get better on the Zyrtec. Also, it is possible that we will be entering another phase of the protocol, which is starting Kaylee on a low-dose SSRI (Selective Serotonin Reuptake Inhibitor...say that 3 times fast!) to restore bloodflow and activity to specific areas to her brain. I explained that earlier in my blog with in this post The NIDS Protocol.

I will be explaining more about NIDS in weeks to come because I haven't really heard a thing about it anywhere! It deserves a harder look from people because it has worked for many children. We need to do everything we can to help our kids, and fast. Whatever it takes, we can't just ignore the ever growing need to address the ever growing population of children with "Autism".

God be with you until next time!

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.

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.

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.

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

Kaylee's story - Part 2

So we decided to never take Kaylee back to her pediatrician again. But the damage had been done. Kaylee was showing some early signs of autism at 6 months. She was a happy baby, but a little too happy to be by herself. I kept waiting for her to be attached to me. I wanted her to need me. I quit my part-time job so thinking that was the reason why she didn't care whether I was around or not.

Kaylee was mouthing things extensively. She could sit for hours chewing on objects. I thought that was just a "teething" thing, but after having two more babies, I realize that Kaylee's excessive chewing was a red flag I missed.

But, Kaylee was doing well in other developmental areas. She was waving "bye", initiating kisses, reading books, and starting to say words like "ba" for bottle.


She was with us. When I look at her pictures from that time of her life, she looks like she is there with us.

Proof that Kaylee regressed:

Kaylee doing "so big!" at her 1st Birthday Party,

she never did that again...

I remember one of the last times I "saw" Kaylee before her autism took hold. Dan and I were going for a walk on a summer evening, and I had Kaylee on my shoulders and she took my face in her hands, turned it to hers and she kissed me.

But at 13 months, when Kaylee started to walk, she started to slip out of our hands. She never waved again, her few words disappeared. She receded further into herself and began to actually eat her books (the corners were all chewed down!), walk on her tip toes, and line up her toys in the straightest lines I had ever seen. She didn't look in my eyes and smile anymore. The unexplainable sparkle in her eyes was gone.

I kept waiting for the words...yearning to hear her say "Mama!" and hug me and kiss me. "What is wrong with me?" I thought to myself. "Why doesn't my child love me like other kids? Why doesn't she care when I walk into the room?" Never once did autism come to my mind as the problem.

A Happy Halloween!

Kaylee and Joey went trick-or-treating today...and for the first time, Kaylee actually understood what was going on and had a great time! It was so nice to do a "normal" thing and be like other people. Last year, Kaylee would cry and scream because we kept on going to other people's houses...Was not fun.

But this year, it was a simple joy I never knew I would have, and Kaylee could do it! She didn't cry and she said "trick or treat" and "thank you"!

Joey did great, too! He can't say "trick or treat" yet, but he didn't want to let go of his pumpkin filled with candy...He walked around with his heavy pumpkin and wouldn't let it go to get into his car seat. So much fun!

And here is a cute picture of Kaylee, I loved it so much I had to share it.

Kaylee's story - Part 1

I have been thinking often about Kaylee's development lately, and how different her beginning is from my other two children. I didn't see the signs in Kaylee because I wasn't experienced yet. There were signs though...

When Kaylee was born almost three and a half years ago, she was born healthy and happy. My pregnancy and labor were uneventful. When she was born she barely cried! She looked surprised at the new world around her. When I first held her in my arms I cried, she was so quiet and perfect. She was content. She nursed with ease. Her Apgar score was 9 out of 10. She was born healthy.

The next day, I was unaware that she had received a Hepatitis B Vaccination and she was inconsolable. She wouldn't nurse anymore, all she did was cry and cry. I was afraid to leave the hospital because I didn't know what to do! When I had asked the lactation consultant why my daughter wouldn't nurse anymore, she asked "did you have an epidural?", and I answered yes and she said to me in a condescending voice, "ohhhh...well that explains it. Her nervous system and sucking reflex are compromised because of your drugs still in her system. Give it a few days and she will be fine."

Soon thereafter, Kaylee developed a rash all over her body for no reason, starting from her back. The doctor told me it was "baby acne", but today, I know that wasn't what was wrong at all. Baby acne lasts for weeks, not 24 hours! They were hives! Kaylee was having an immune reaction to her vaccination, but I never suspected anything.

It took days for Kaylee to eat again, we would do everything to wake her up but she wouldn't. She never wanted to eat. I was scared, especially being a first time mom. Eventually she started to wake up and eat. I never dreamed that she may have had a reaction to her shot in the hospital.

Two months later, her pediatrician gave me an informational sheet from the CDC on Kaylee's immunizations, telling me "don't do any research of your own, just read these pamphlets and make your decision based on those." Well I listened to her, I understood where she was coming from. I didn't want to scare myself. I mean, I had shots before and I was OK.

So I went through with it. Kaylee received 3 shots, one of those that had 3 included in it. Basically, she had 5 at one time. Kaylee screamed and cried and I gave her Tylenol and she slept for 20 hours straight. Why didn't I see it then? That's when she started looking at spinning fans. Today I understand this was a "self-stimulatory" behavior.

Mommy and Kaylee, right after

receiving her shots, we had no

idea what was to come...soon after

she became very sick.

At 4 and 6 months, Kaylee's reactions to her vaccines were much much worse. She screamed uncontrollably for hours and had a fever of 104 degrees or more. She laid in my arms with a blank stare in her eyes. I was afraid she would die. She didn't even have the energy to cry anymore. I called her doctor and asked her "why is this happening and what should I do? She had her shots only a few hours ago and she was OK then!"

Her doctor said to me in an annoyed tone of voice, "I bet she just has an earache. Give her some Tylenol and let her cry it out." I listened to her doctor when I should have taken her to the hospital. I didn't listen to my instincts.

Some doctor. We never went back again. By some way, I just couldn't do it anymore. By God's grace, Kaylee hasn't had a vaccine since. I don't know what would have happened if she would have gone back, I think we could have lost her forever.

For Such a Time as This...

Today my pastor was teaching out of the book of Esther, and we came to the part where Mordechai, Esther's cousin, was urging her to go to the King and plead for the lives and the preservation Jewish people.

For if thou altogether holdest thy peace at this time, then shall there enlargement and deliverance arise to the Jews from another place; but thou and thy father's house shall be destroyed: and who knoweth whether thou art come to the kingdom for such a time as this? Esther 4:14

God had put Esther in the place He desired her to be in to do His Will, to save His people. He gave her favor in the eyes of the king and the people so that she would become queen. Now it was her time to do what God wanted her to do. He had ordained her for such a time as this. But God wasn't going to do everything for her, she had to take a chance and put her life at risk.

I got to thinking about myself and my job as a wife and a mother. I have, at times, been so discouraged, so grieved about my circumstances. I have told God "I can't handle all of this!"

But today, I realized, that God knew what He was doing, He intentionally, sovereignly allowed these these burdens into my life because He believed that I, and all of the other mothers of children who live with autism, could act for such a time as this. How encouraging that is, to know that God is in control and that He has asked me to simply do a job made just for me:

...young women...be sober, to love their husbands, to love their children. Titus 2:4

This is an encouragement to anyone and everyone out there...God has a job for you and for you only and only you can do it in such a time as this. And as someone wise said somewhere: If God brings you to it, He'll bring you through it. That doesn't mean He'll do everything for you, but He will do everything on His part so that you can do yours.

Grace and Peace to you through our Lord Jesus Christ!

Treatment Progress

As for a bit of an update, things are still going well here in many ways. I have seen a definite improvement already! I am not sure why or how, but my daughter seems brighter, less foggy. I don't feel like it is so hard to pull her into my world anymore. She helps me around the house, she looks at me and talks to me more, she's making new sentences of her own now. I feel like I am getting to know her more, and I feel very blessed. Dare I say that I feel I am peeking into who Kaylee really is? Before, all she did was "stim", and now I feel like slowly she is coming into our world.

Sleeping is not such a battle anymore. I am pleased to say that she is still sleeping through the night and napping after school. We struggled for a year with that issue. Praise God!

I don't understand how it happened but it is definitely because we started her on the Valtrex. Next we will be starting her on the antifungal phase, which I know will be scary. Right now I will take this, hoping there is a brighter day to come.

To heal or not to heal?

Recently someone left a comment and implied that it was wrong of me to ask for God to heal my child of autism. They also stated that autism "doesn't need to be healed" and that I need to accept my daughter the way she is.

While I understand where this person is coming from, and I am sorry if these blog posts make you feel like you are different or unwanted because of autism. You aren't, you are special and important to God! I am so sorry for the burden that you have to carry. You must be a courageous and very strong person...

However, you don't know my whole story, either. I know this person may feel like when we are trying to "heal" our children we aren't accepting them or loving them for who they really are...That autism is who they are and they can't get out of that. I suppose that in some cases that may be true. But I do believe that we need to love our children right now and play with them and be with them as they are. My little girl is one of my best friends in the world and I love spending time with her.

But if the work we are doing to help her get better is wrong, why is my daughter getting better with treatments?

My daughter suffers from medical issues, such as immune dysfunction, daily fevers, diarrhea, food sensitivities, yeast overgrowth, and more. My daughter does not have Autism. She is sick! She is so sick it is causing her development to stand still.

My daughter is and has been suffering. She used to scream in pain as I changed her diapers. She cowers in fear over the simplest situations, like washing her hands, or having water run down her head, or playing in the tunnels at McDonalds. She used to be sickly thin and pale due to constant diarrhea and not obtaining the nutrients from her food. While other kids are playing with each other, she is by herself singing. Kids run away from her because all she knows how to do is say "hi" and try to hug them.

My husband and I accepting Kaylee and loving her no matter what but fighting to get into her world and bring her into ours. We love our daughter and even if she still has autistic tendencies and we will still be crazy about her if she stays the same! Just because we are seeking to get her better, it doesn't mean that we don't love her, just the opposite: we are willing to do anything to give her a better life.

Long story short: don't get down on us parents of children with autism, we already have it hard enough. We need help and encouragement.

The plague of Motherly Guilt

I must begin by apologizing for such drab and flat blog entries lately. I have been so tired lately and being tired really curbs my creativity and I have trouble thinking deeply. I haven't been getting as much sleep as I should and I feel like my list of things to do is neverending.

Not to complain. My life is full of blessings, I am so thankful to not be bored or lonely. But I do feel like I have a nagging sense of guilt that plagues me, thinking of all of the ways I have failed or didn't get everything done that I wanted to. Having three young children I believe it is inevitable to not feel guilty all of the time. Each day I feel like I don't spend enough time with each one and then I scare myself thinking, "My kids are going to grow up unable to form emotional attachments to anyone!" and many more unlikely and scary scenarios.

Now I gather that ALL mom's around the world suffer from this affliction, feeling guilty about what we did do, didn't do, did wrong, and much more. But I imagine that guilt does it's worst damage when we do not address it. Guilt has a way of festering in my heart and eating away and my peace and I don't realize it is there until I am in a bit of a panicked state.

That is when I go to my Master Jesus and I give Him the broken pieces in my life. I know that I can only do so much and leave the rest to Him. He says: Come unto me, all [ye] that labour and are heavy laden, and I will give you rest. Matt. 11:28

In the end, that is all it is about: giving it to Him. Over and over again I trade my sorrows in for the peace that only He can give to me.
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. John 14:27

I say, "Jesus, this hurts so bad in my life. The grief of seeing my child like this tears me apart inside." and He tells me, "Come to me, child, I know." Just going to Him may not make everything go away, but He comforts me with His Words. I know He is there...

Update

It has been a month of Valtrex treatment and thankfully, things are getting better around here. Kaylee is doing well and not as irritable, although she still has low grade fevers in the afternoon, Kaylee's sleep habits are much much better! We have had sleep problems with Kaylee since last November, with night-waking, not falling asleep, and early waking. Sometimes all three problems in one night!

I wanted to wait a little while after things started getting better to make sure it wasn't a tease. (That has happened before and then I breathe a sigh of relief too early.) But things have been going well for about 2 weeks now, at least.

Now, Kaylee is taking naps everyday and sleeping 11 hours a night, too! I am so grateful, because good sleep means a happy kid. And a happy kid means a happy Mama.

Kaylee also seems to be getting "clearer" if that makes sense. She is talking to me now a lot more and not just at me. She looks at me and wants to share with me, and she is much more affectionate, giving me kisses. However, she still has much trouble understanding what is being said to her and has trouble following directions. I'm not sure how much of that is behavioral and how much of that is due to her diagnosis.

We still have lots of issues here, but I am grateful for the gains made already, and each time I give Kaylee her medicine, I hope we are a little bit closer to getting her better.

Tough Times

Well this is day 20 for Kaylee on Valtrex, and she's still getting worse. Each day since Friday last week has been a rough one. Right now Kaylee is getting very upset over little things and unable to calm down without taking a "break" in her room. She is very emotional and volatile and is acting very tired. Physically, right now Kaylee is experiencing low grade fevers every afternoon.

But may I say, most importantly, Jesus Christ is the same yesterday, today, and forever (Heb. 13:8) Talk about some comforting words.

Recently I have been thinking about how it felt after we found out that Kaylee had autism. It was utterly overwhelming, discouraging, and scary to read about all of the expensive, unproven, and risky treatments that people have tried on their children. I didn't know where to go or what to do! It was a complete whirlwind to me and I lost myself in these questions asking God "What should I do? Should I wait or should I move forward? Which way do I go, God?"

Things changed for me when I looked in my journal almost a year after Kaylee's diagnosis and I realized that I was still asking God the same questions. "God?", I asked, "Why haven't you answered me after all of this time?" He told me "You were asking the wrong question!" Simple as that. All of that time I was waiting for God to supernaturally plop some sort of wisdom into my lap. All of the research, all of the tears, all of the despair were totally fruitless. I had come full circle. One year and still in the same place.

Was all of that time wasted? I don't think so. God is GOD and He has promised that all things work together for good for those that love Him (Rom. 8:28) I do realize that during that time I was not trusting Him and His timing. I was coming to Him with a doubting heart, and how could I hear His voice then?

For a year of endless searching and research, I didn't find anything that kept my confidence. The clock was ticking and I knew this window of opportunity would pass and Kaylee's window would soon be closed. Finally in desperation I took and educated leap of faith and chose to take a chance and try Dr. Russell and the NIDS Protocol. And with a trusting heart I said to God "Please bless our decision, Lord."

Now I am not quick to ascribe something to "supernatural intervention", but everything just worked out. I didn't have to work so hard for this. We had the money to go to New York, we were able to schedule the appointment immediately (most have to wait much longer than we did), and Kaylee's primary doctor was onboard for the treatment (unheard of!) and wrote the orders for her testing (saving us a whopping $3800!).

Now, since we have taken the steps to medically attempt to recover Kaylee from autism, I feel like a part of me has had a peace like I haven't had since the diagnosis. All of this time I have been on the fence about all of these treatments, now I am thankful for the guidance of a doctor who has "been there" and I believe that we have "covered" him in prayers, that God would grant him wisdom and we believe that God answers prayer!

An Answered Prayer

Hopefully I am not speaking too soon, but I believe that Kaylee is experiencing a "die-off" reaction! Today is day 14 on Valtrex (her antiviral) and she is extremely irritable and on the edge...as if she is getting sick. She also has to be woken up to go to school too, which used to be unheard of!

Now, I know it seems absurd, but this is actually an answer to prayer for me. Two days ago I prayed for some sort of reaction to reassure me so I would feel better about the path we were taking with Kaylee. As Dr. Russell told me, this is a good thing, it means we are on the right track and getting rid of those viruses that have made their oh-so-comfortable home in Kaylee's body, and these viruses are fighting back with a vengeance!

Lately, I have been trying to be so specific with my prayers so that I know when God answers me! I am guilty of praying the general prayers like "Lord, please heal Kaylee from autism if it is your will." Not that there is anything wrong with that, I still pray for that. But now I have faith that God will answer my prayer in the way He sees fit when I ask for something specific. This isn't some formula or ploy to "make" God give you what you want. It's about how you can really see God move then! I am praying for little steps. It makes sense...because when you pray for something specific, believing that your Father hears you, you get an answer quicker, your faith is strengthened, and He feels so close. And that's the best feeling of all.

For this shall every one that is godly pray unto thee in a time when thou mayest be found: surely in the floods of great waters they shall not come nigh unto him.
Psalm 32:6

Blessed be the Name of the Lord

Lately there has been a black cloud of fear hanging over me, looming over every moment of my life. Somedays I feel as if I am overcome with doubts that discourage me until overwhelmed with I am a title wave of sadness where I can't find my way back out again or remember where it started. I usually try resolve this by either doing more research to find more answers about autism (which I have realized hasn't really ever made me feel better) or by reading God's Word and admitting my fears to Him. If it is quiet and I go to Him, He always answers me.

Thankfully, my husband also seems to know the right things to say to encourage me and make me feel better. I know people say that autism can tear a family apart, but it has only made our marriage stronger, and I thank God for that.

Only time will tell if we are doing the right thing for Kaylee. Honestly, I am scared of disappointment. I don't care so much about the money or time, I care about being out of the "window" of time that we can really help Kaylee have a "normal" life, and that this wont work. Because we are taking this route, we have forsaken many other ways.

I can't even imagine, or maybe I won't let myself imagine, that Kaylee would come out of this shell someday. Sometimes when she looks into my eyes and talks to me, I feel like I can see a glimpse of her, of how things could be.

In a book I read recently by Mike Singletary (yes...the football player!) said "You do your part the best you can, and you leave God to do the rest." That is what I cling to. All I can do is my best based on what I know and what resources God has given me and I know that if it is His will He will bless my efforts.

But no matter what, I will say Bless the Lord. Even if I don't get my heart's desire, I will still say "blessed be the name of the Lord."

I will grieve and I will cry, but I know that my father God still loves me and will give me the grace and strength to get through because He promised His strength is made perfect in my weakness.

Crabby Kaylee :(

Today is day 8 for Kaylee on Valtrex (an antiviral that specifically addresses the Herpes family of viruses) and she is crabby! I am not totally sure if it is "die-off" but Dr. Russell told me if she would have a die-off reaction it would be at 7-10 days.

Kaylee just doesn't seem like she feels well, and she is getting about 9 hours of sleep a day when I believe she needs at least 12 hours of sleep a day. Last night she slept in our room in her little bed and she kept waking up crying saying in her high pitched voice, "No! Want momma!" I know something is wrong with Kaylee when her voice is at "higher notes", if that makes sense. Her voice is high pitched when she is upset and not feeling well.

Not only are her sleep issues exacerbated, but she "melts down" at the slightest problems or when she is told "no" about anything. It is very tiring emotionally.

I just don't know if it's die off or if she is just not sleeping well, everything is a mystery with autism. I can have a great week and then 12 bad ones with her with no understanding of why.

Anyway, earlier in my blog I shared that Kaylee had a very high HHV-6 IgG titer and here is some info about it if your are interested:

HHV-6 stands for Human Herpes Virus 6 and it causes roseola in children and can be latent and dormant in adults for many years.

HHV-6 is also known to infect and destroy the cells that produce myelin, the fatty coating that surrounds and protects nerve cells. Additionally, the virus demonstrates the ability to cause disruption of the normal functioning of the human immune system.

According to Dr. Michael Goldberg, the founder of the NIDS Protocol, studies have also implicated the temporal lobes in the pathogenesis of autism, and Herpes viruses in humans has long been known to prefer temporal lobe and limbic sites. The NIDS doctors don't believe that autism is caused by a Herpes infection in the brain, but it may contribute to it's manifestation.
Scary!! It makes me so glad we are doing this intervention. I am so tired of her not feeling well or sleeping well. I am praying in faith knowing that God will answer my calls to Him to show us an answer and help us. He is our very present help. His promises always make me smile, even deep down in my soul. It makes me think of this verse:

From the rising of the sun unto the going down of the same the LORD'S name is to be praised. Psalm 113:3

The NIDS Protocol

Before I delve a bit more into what Dr. Russell's plans are for Kaylee, I thought it would be good to explain the NIDS Protocol briefly. NIDS stands for Neuro-Immune-Dysfunction Syndrome and the theory is that many kids with autism are physically sick and their immune systems are so "hyped up" that they actually cause the brain to go into "shut-down" mode in order to protect it. They explain it like how you get "brain-fog" when you are sick. It's actually the body's immune response to protect its most prized possession: the brain.

So the NIDS doctors do TONS of blood tests and immune panels on our kiddos to see what exactly is going on so they can prescribe the right regimen. This includes the GFCF low sugar diet, antivirals, antifungals, antibiotics (for recurrent Strep infections that can affect the brain), and very low dose antidepressants.

Dr. Russell explained to me why the NIDS doctors use antidepressants while I was in his office. He said that once the immune system is "cooled down" effectively, it is important to restore blood flow to areas of the brain that have "shut down". According to studies using NeuroSPECT scans, children with autism have specific areas of the brain that are hypoperfused (meaning they don't get much blood flow). In autistic children, these scans reveal a lack of blood flow to the temporal lobes and too much blood flow to the limbic system (the center of emotions in the brain). SSRI's (or antidepressants) like Lexapro, Prozac, etc. are effective at restoring blood flow to the temporal lobes, where autistic children need it.

"So why not hyperbaric oxygen treatments?", I asked Dr. Russell. He told me that that the WHOLE brain gets hyperperfused with HBOT and that is not good for all of the "overactive" areas of the brain. With a very low dose of SSRI's blood flow can be restored to specific areas of the brain while ignoring the unwanted areas.

If you want to find out more about NIDS, please refer to my weblinks to the left and you can find even more in-depth information and research about this yourself. Believe me, I don't do it justice!

Not only am I very impressed with the research, I am impressed by the many children who have been helped by this treatment. Everyone at the NNY Autism Center has a child with autism who has been greatly improved or cured by this treatment. The proof is in the pudding!!

Walking into hope

(Picture is the Black River next to the NNY Autism Center)

Well, it was a week ago we returned from New York after our appointment with Dr. Russell at the NNY Autism Center.

I must say that there is something about having a child with autism that no one else can understand unless they deal with the same struggles, and that is the "shame" we feel when our child acts up or just can't deal with changes or not "getting their way". It hurts when people give you looks at the store...when your child doesn't act like the other kids who can respond when a stranger asks "how old are you" and your child looks at them like they said "ooga booga boo!".

There is something comforting about going somewhere where people accept and understand your child and their limitations. It was wonderful for me to go to a place where I felt like I was walking into hope. I have something I haven't had for a long time: hope.

It's just a glimmer right now. I won't let it burst forth like it wants too. But I am carefully letting a little hope shine on my life right now, and that makes all the difference in my attitude.

With hope, I can deal with just one more tantrum, one more day of autism at a time when I am thinking to myself that this won't last forever, Kaylee will get better someday.

But I digress...I was feeling good when we got to the center, because we would be talking to someone who has been there, and he will help us with our child! (Dr. Russell has a son with autism who has responded greatly to the NIDS protocol. He is mainstreamed and seems to have lost his diagnosis, I believe.)

I was expecting to see some sort of a sterile medical building but I was surprised to see that the autism center was a humble home right on the Black River. Everyone at the office was so kind and patient and it was a relief to me.

After talking to Dan and I, Dr. Russell looked at Kaylee's labs and history and decided that Kaylee was a good candidate for the NIDS Protocol and because of her high HHV-6 titers and other things(more info about this on the next post) he wanted to start Kaylee on an antiviral (Valtrex). He said he expected a "die-off" reaction in 7-10 days.

I will be sharing more soon...
-Jennie

Kaylee today

I am hoping that soon I will be able to share all of the improvements that Kaylee is making. In order to do that, I am going to paint the picture of how things are today and the specific challenges we are facing. Here are some of Kaylee's issues:

- pronoun reversal
- delayed echolalia
- sleep disturbances
- inability to understand most words (especially abstract ones)
- scripting
- hypersensitive audition
- inability to have a conversation
- inability to make choices
- constant low grade fevers
- toewalking
- irritability
- inability to transition to and from activities without tantruming

Kaylee's blood work shows:

- high lymphocyte count
- low neutrophil count (this combination is indicative of a bacterial infection)
- an active HHV-6 infection (although there are no symptoms present)
- an eosinophilic percentage of 3% (there should be none or a small trace, this is evidence for allergies)
- a high IGe level (also allergy mediated antibodies)
- a very high cholesterol count (205) (possible fungal indicator)
- high blood folate level
- high hematocrit and hemoglobin level (the exact opposite of what I expected!)
- a high NK (Natural Killer) Count

Next we will be talking about what treatment route Dr. Russell is planning on taking with her.

First timer

This is my first time doing blogging...I am feeling rather self conscious right now. Maybe if I get that out I can move on and talk about something really profound and life changing? Or maybe not.

Maybe I should just pretend as if I am writing to a certain person instead of out into the "great unknown". I mean, who will read this anyway except for people who know me? Okay, now I am feeling better.

Well, here is my purpose for writing this blog. It's simple: I feel compelled to. I think I will learn some new things as I write them down and gain insight through this time.

For those who don't know, my 3 year old daughter, Kaylee, has High-functioning autism. It has completely turned my life upside down. I feel like I have lost my daughter to these idiosyncracies. She's in her own world most of the time, unable to communicate and reply to any sort of a question. She can barely answer "yes" or "no". When she gets home from school, I ask her "How was your day?", she can't answer me. She blankly stares ahead or watches the bus until it rounds the corner unseen as if I weren't even there. I am heartbroken as I watch her at the park, more interested in jumping up and down on the moving bridge than playing with other children. At night when I tuck her into bed, I say "I love you" and I have never heard it said back to me. She heartily replies "Mommy loves you", not having the faintest idea of what it means.

Now I know that God's Word tells me "In every thing, Give Thanks for this is the will of God in Christ Jesus concerning you" However, it doesn't say "For everything", right? Tell me if I am wrong or not, please. I want to be right with God.

Most of the time, I am not thankful for autism. It has stolen my little girl. I am fighting to get her back. I am doing every possible thing I can to ransom her from this monster that has kidnapped her from my very arms that held her tightly, I never imagined that autism would visit our household.

Maybe one day, I will thank God for autism. Maybe it is wrong of me not to sit back and just wait for God to perform a miracle if He so wills it. I don't feel like I have any answers right now.

Based on what I do know, my husband and I have decided to move forward and ask for God's blessing on what we are doing. We are going to seek out medical help for our daughter.

This is the beginning of a new journey with Kaylee. We are going to be implementing two therapies with her in the coming months. One is biomedical and one is neurodevelopmental. I will be documenting her progress and hope that there will be some to document in the coming months.

Stay tuned!