What if it's not Autism Presentation

If you are curious and not much of a reader, I recommend watching this presentation by Dr. Michael Goldberg who discusses why the NIDS doctors treat autism like a disease. Very understandable yet very scientific!

What if it's not Autism?

Update

Things have been like a roller coaster around here. Kaylee's behavior is up and down. We will have lots of bad days and a few good ones peppered in here and there, and I am pretty sure its due to her allergy/intolerance issues.

Recently, Kaylee had her Diflucan removed and she got better for a few days and then things got bad again. Then we remove something else and so it goes, its a cycle and just when I think it ends, something else comes up and her behavior gets bad again. Right now I have removed chicken from her diet and its working! But I am not holding my breath because another problem will probably arise. And so it goes with allergies...

Oh April 23 can't come fast enough! I shouldn't be placing all of my hope on one doctor (Dr. Oberg, who is a specialist in allergies and immunology), but the nurse at the NY clinic seems to know this is the key for Kaylee. However, I still place my trust in God, who is the God of knowledge. I know He knows exactly what Kaylee needs.

Right now Kaylee is still on Valtrex and Benadryl daily. She still has dark circles under her poor little eyes. She still has a very limited diet. She still breaks out into hives from certain foods. Here behavior is so difficult to deal with when we have a "bad day". She acts like a kid who is sick, over-emotional, angry, and tired all rolled up into one. Most of our days are "bad days". I would say we have a good day every ten days. This is very hard on me and the kids, too. I pray this ends soon!

On the bright side, Kaylee is really progressing cognitively and socially. She answers questions very well, can follow directions, and initiates play with other children. She especially likes older boys which I need to watch out for...

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:

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.

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

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!

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.