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.