What's Been Going On? So Much!

I know it has been a long time since I have posted on this blog, I have wanted to, I have thought about it almost everyday, but the thought of writing was totally overwhelming to me. My reason for not blogging is not that I have nothing to say, on the contrary, I have so much to say I don't know where to begin or how to organize the information!

My perfectionism doesn't help either. I should say that it has frozen my creativity solid. I also struggled with "who cares what I have to say" thoughts and also feeling like posting about my life felt kind of narcissistic in a way.

But I have decided to write again despite of all that has kept me from it, imperfect as it may be.
This may take a few blog posts to say what has been going on the last few months so bear with me, if anyone reads this thing anymore, that is. If not, that's okay too! I need to get it out.

First thing, how is Kaylee? Kaylee is doing so well, I feel embarrassed to brag about it. Kaylee no longer qualifies as a child who has autism. I am tempted to take her to a specialist to get officially un-diagnosed. Every single day I marvel at how well she is doing and the gift I have been given. All of the autistic behaviors she displayed are gone. No more toe-walking, tantrumming, nightwaking, scripting, spinning, stimming, ignoring people, and anything else that she used to do that was "autistic". No more diarrhea, no more hyperactivity, no more dark eye circles, no more stomach aches. No more looking past me when I look at her. I can't even remember everything she used to do because it has been so long since she acted like a person with autism.

However, Kaylee is still a bit immature, she acts more like a 4 year old instead of a 5 year old. She plays with her friends but doesn't communicate as well as a child her age could. She recently started asking questions and answering "why" questions after a medication change back in the summertime. Kaylee is moving right along developmentally, but since she spent a few years in her autism-fog, she is behind her peers a little bit. She is a sweet and happy child most of the time, she plays with her brother and sister, and she is in a regular kindergarten class and reads so very well. I hope to post a video on here soon!

As for Kaylee's current treatment, here is what we are doing:

• GF/CF Nut free diet, lower in sugar and low in fruits
• Famvir (an antiviral medication)
• P/N (low dose immunotherapy/allergy treatment)

If Kaylee does happen to eat some dairy or wheat she will become hyperactive, have tantrums, and nightwaking return within 30 minutes. However, when we first started the GF/CF diet, I didn't really notice when she had a dietary infraction because there was just too much inflammation going on. The better Kaylee gets, the more I can tell what triggers her behaviors.

I hate to sound proud about Kaylee's progress, I hate how torn I am about sharing it. I certainly don't want to brag about it, but I feel so blessed, I tell everyone about it. Our lives have changed and we are so happy about this.

I wish for everyone to have what we have. But it is not so, yet. There is a battle raging and it needs to be won. There has been some been some great discoveries made recently and I haven't been free to discuss it until recently, which I will be doing in the posts to come. It involves our entire family and most likely many families affected by autism.

Until then, be blessed, anyone who reads this!

Yeah...I'm Still Here!

But barely! Recently it has been sickness galore in my house! I believe we may have even been hit with the swine flu around here. Hey we survived but it was tough, the worst flu I ever had! Maybe now I can relax and not get scared about it...

Here are some Halloween pictures of the family, it was great but cold. Of course Kaylee had to be a beautiful "fairy princess", as she called her costume. I haven't shared Kaylee's peculiar preference for dresses and skirts, have I? Well this girl LOVES to look pretty. She prefers dresses and skirts everyday. She will wear pants, but begrudgingly so. I am sure she would wear makeup if I let her.

















As for an update, Kaylee is doing so well. Most days we have NO tantrums whatsoever, unless she is exposed to some chemical or allergen, but the right allergen extract shot turns her right back around. I don't know what I would do without those things. Sometimes I have these far out worries that there will be some sort of nuclear holocaust and I will not be able to get Kaylee her medicine...but thats kinda overboard, right?

I want to get some before and after footage on here...but I have most of my older videos burned onto a DVD and I am not sure how to convert it to a file that I can put onto the website. Anyone know how I can do that?

Thats all for now!

Two Anniversaries!

My one year blogging anniversary...

and Kaylee's one year anniversary since we went to New York to help heal her "autism". What a roller coaster ride it has been for us, but so well worth it.

Things are going great lately, I just started a part time job doing data entry at home so I am even more busy than I was before. I don't want this blog to be a place where I blabber on about my life, but I record some of my experiences and how I got through them to help others. But most of all, I am having trouble trying to express what I want to say on this blog, and lately I have been battling discouragement with it. I wonder if it really makes any difference if I write in it. At least now I can remember everything we have gone through in this journey, though.

Kaylee is doing so well, I took her in for speech therapy (actually its "language therapy") because she has some difficulties saying things she wants to say (her syntax is off, for example), but all in all she is much much better. The transformation in her from one year ago is almost unbelievable.

An interesting thing happened with Kaylee's speech therapy that I have mixed feelings about, Kaylee's speech therapist told me she had never seen a child with autism recover like Kaylee has. In fact, she told me she thinks autism is overdiagnosed and she doubted that Kaylee even had autism. She went as far as questioning whether a doctor had diagnosed Kaylee with autism...

Two years ago this past August a developmental pediatrician diagnosed Kaylee with autism and sent us on our way. This doctor told me there was nothing we could do about it, no "cure", and she could not even tell me how severe Kaylee's autism was, because she said it was hard to tell but she said Kaylee easily fit the diagnosis for autism. I will never forget the look in her eyes, I could tell that she knew what we were in for...I wondered how she could have a job like this; "breaking the news" to parents that will start them on a difficult journey without much help or hope along the way. Yet another child lost to this monster we call "autism".

But I digress, I was actually quite mad about what the speech therapist said. Dan and I have been through the fire these past two years after the diagnosis, dealing with tantrum-filled days, sleepless nights, and a child who was totally in her own world. We have spent thousands of dollars to get her back. We want other parents to know that AUTISM ISN'T REALLY AUTISM. These kids are sick and they need help: medical help!!!!!!

My daughter did have autism, and it's great that even an experienced professional can't recognize it anymore, but unfortunately it still supports the ignorance that exists and the belief that autism isn't treatable when in fact, it is. These kids are sick, they are unhappy, and they have incredible strength to get through the day and do the simplest things. My heart breaks for them. People need to WAKE UP before we lose more children!! And trust me, we will. Things are not getting better. Now a recent study has shown that 1% of children have autism.

So even if I feel like this blog isnt reaching a lot of people in a Jenny-McCarthy-like magnitude, at least it may help one child, one day, to get the help they need, and in that case it will be well worth the work.

Kaylee Surprised Me...

Kaylee surprised me yesterday morning when she told me, "Look Ma! I made a person!"



Ain't it cute? See the arms are coming out of the sides of the head? You can't see it but this person has some stick feet and legs, too. I couldn't believe she made it herself until I called my husband at work and asked if he did it! Sure enough Kaylee did it all by herself!

Why is this so cool? It's because it represents another developmental milestone for her. Not only does that take fine motor control, but much more maturity cognitively speaking.

A year ago, this kid was eatin' crayons and the paper labels on them.

This year, drawing pictures!!!!!!!

I just remembered that her IEP for school was to draw a face with eyes and they were going to work her through one body part at a time and here she does the whole shebang!

Update Time!

I better get another post in for this month! Otherwise I will have only one for July!

I should really update how things are going with Kaylee. They are great! I have been playing detective with her though. Kaylee's immune system is "exquisitively sensitive" as her nurse practitioner in NY told me last week. For instance, if Kaylee deviates from her limited diet right now with a piece of pizza or a hash brown from McDonald's (yes we had quite a time after that) she has potty problems and an impossible attitude and her stim behaviors return.

We have also figured out that some of her allergy extract shots were not helping but hurting her progress. I wasn't sure what to do and I prayed for God's wisdom and started removing ones I felt might be the culprit and I was right! Oh the Lord doth give wisdom liberally to those who ask! (James 1:5)

If Kaylee has a good day with no dietary issues and her shots are all ok, she is a dream child. Well behaved and so talkative and easy. I have wanted to shout from the rooftops about how well she is doing! If I were to take her to a doctor today I believe that she would no longer have the autism diagnosis. She does not fit the DSM IV criteria!

Our only issues now is her catching up to her peers and making sure we keep her immune system cooling down and modulated.

What a far cry from a year ago.

I tell everyone I know about what we are doing. I hope that people will listen when I tell them my child is being healed! And there are many others! Why won't people listen? I don't understand. Living with autism has been a nightmare, one of the worst things that could happen to my child. It is harder to live with it than to try and get her better. Yes this road has been hard, all of these treatments but we are on the other side now.

I try not to get discouraged. Not everyone will hear and want to do what we are doing for Kaylee, and that's okay. But really, no one has wanted to listen.

And I feel much sorrow out there for the children who have to suffer not only physically but emotionally and mentally too.

Well thats not the best writing I have ever had, but that's what's on my mind tonight. God bless you with wisdom and strength!

The ATEC

Months ago I found out about a free online exam, the ATEC (Autism Treatment Evaluation Checklist) made by the Autism Research Institute (it is statistically reliable) that evaluates the efficacy of any treatment you are using on your child based on your report of their "autistic symptoms". The lower the score, the better. This checklist evaluates areas such as speech/communication, sociability, sensory/cognitive awareness, and health/physical/behavior.

On January 12, 2009, Kaylee scored a 50 on the ATEC.

On June 11, 2009, Kaylee scored a 12!!!!

If you are interested in scoring your own child with the ATEC you can find this here.

Kaylee is 4 now! And a whole lot different...

This week, Kaylee turned 4.

To many other parents, birthdays are nice and a joyful time...
but this birthday, to this parent, this year, was so special.

This year, Kaylee was here. She was with us in a way I wondered if she ever could be.

Today, I am thinking about Kaylee's birthday last year. She was sad. She was unhappy. She didn't understand what was going on. She ignored everyone who came to see her. She just didn't get it.

This year she asked me all day when we were going to have her birthday party. She excitedly hugged everyone as they came in, running out side to greet them. She drank in, with joy, as everyone sang Happy Birthday. She knew she was the special girl of the day. She was so happy.

This year we asked her what she wanted for her birthday. She replied, "ummmm...a birthday cake...and sprinkles...and candles....and Auntie Cher and Grandpa to come over!" I got right to it and made her special cupcakes that she could tolerate, and thankfully, she loved them, and her Auntie and Grandpa are so tickled to finally get some much anticipated attention from her!

The changes in Kaylee are unbelievable, when I think about where she was a year ago, we are so blessed to have come this far.

Now, the new problem is...this girl asks me if we are going to have a party everyday!

Kaylee's Allergy Treatment Update

It's been over 2 weeks since Kaylee's first visit with another doctor, Dr. Oberg, and I wanted to wait to post about her progress since I wanted to be sure before I said this...

THIS TREATMENT IS WONDERFUL!!!

For the past few months Kaylee has been on a strict Elimination Diet (no wheat, no milk, no soy, no nuts, no eggs, no yeast, no chocolate, low sugar, only 3 fruits, no tomato, no dyes, no preservatives) and Benadryl everyday. She has had an air purifier in her room, carpet removed, and everything else a mom could do, and yet her allergy symptoms were not abating. Kaylee still had major meltdowns (Sometimes up to 20 a day. All I had to do was ask her a question) and these really dark "allergic shiners". Not any "typical" allergy symptoms like a runny nose or sneezing, though and that's what used to throw me off.

Nothing has worked for Kaylee until now. Her dark under eye circles are fading, and her meltdowns are almost non-existent, she pays attention much better, her stimming is decreasing again. I find myself constantly bracing myself for her outbursts and I am pleased to find they don't happen! She is about 50-75% better already, and the people in the office tell me she will be at least 90% better in the coming weeks as her immune system cools down. The transformation thus far is such a blessing.

There is so much I want to cover about this treatment, I don't know where to start so I am going to cover it in a number of posts about what this treatment is, why and how it works, and Kaylee's before and after.

More to come!

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...

What I have learned about IEP's

For any of the other mom's out there who might benefit from this information about IEP meetings:

1. No matter what you say or request, the "professionals" have made their decision about what your child needs and they will not change it until they deem so...

2. If you have an extra request that costs them extra $$ you better have another "professional" opinion to back you up (such as a doctor, therapist) and even then you should still have a lawyer.

With all of that being said, I am still very thankful that Kaylee has a chance to be with teachers who care about her and understand her disability. I am grateful for a school system that even cares at all about my child with special needs and continues to accomodate her...

I have an aunt who is mentally disabled and years ago they just stopped her schooling because they deemed her incompetent. She didn't even get past eighth grade.

In another country my child would be forgotten and I am grateful for the resources God has provided for her, even if I feel they are not enough.

Dan and I decided that we are not going to "fight the system", but work as hard as we can with her at home and we hope that her getting better physically will be the biggest most worthwhile action we take on Kaylee's road to recovery.

Kaylee's teachers told Dan and I at the meeting that they were impressed with how well Kaylee is improving, and so quickly. As I mentioned before, once we started the NIDS Protocol, Kaylee flew through her IEP goals and objectives in just over 2 months. That was after having them for 6 months prior. Things seem to be clicking for her now.

So for now, I am thankful and not at all angry about not getting what I wanted for her. I believe that God knows exactly what Kaylee needs.

Ahhh...the Adventures of Motherhood

Its been a while since I wrote on here. Things have been crazy, I mean, how does one person get sick twice in one week? When they have kids to propagate germs of course! That was me this week, sick as a dog with a stomach bug and then a bad cold right after.

Anyway, here is a quick update on how things have been. I found out this past week by accident that Kaylee + Zyrtec = Crazy, defiant Kaylee. I took her off of the Zyrtec and her behavior got much better.

But after I took her off of her allergy medicine, she started acting really weird, all hyper, she had hives on her face, and her behavior was still icky. For instance (for those who want to know) I could not ask Kaylee a question because she couldn't answer it without getting upset by saying "yes/no/yes/no". Kaylee also has mushy stools again, which is a clue that there is a food that she is eating and not tolerating. (Most moms of kids with autism end up with a "poop obsession", if you cannot already tell...)

Now that there are more food allergies we have found, it appears that it is an allergy to either chocolate or tomato or both. Poor kid. She has such a limited diet. If I have to cut out anything else I am in trouble. I don't know what she will eat besides plain chicken and boiled water!

I am trying to find things to make up for what she misses now. For instance I just spent a whopping $6 a bag for some stuff called "carob" chips and dairy-free white chocolate chips! I also found some "No-mato" catsup online for $6, too. It's made with carrots. (Yum, right?) We'll see what the verdict is on that soon...

Otherwise, when I cut these allergies out, Kaylee is an angel. I mean, no resisting about anything! She is a joy. In fact, thats what her name is: Kaylee Joy, because we knew that's what she would bring when she came into this world. Oh how I hope and pray things can stay this way! She is so much happier, and I think she feels better.



On a silly note, if you are wondering about what a taste of being a mom of 3 kids of three years and under is like, take a look at a sample of what I sweep off of my dining room floor!


*sigh* A woman's work is never done!

Another Piece of the Puzzle

I have been experiencing too many problems with Kaylee and I knew something has been wrong. She had recently begun taking Singulair for allergies and Lexapro to help restore blood flow in the brain. But Kaylee became hyperactive, excessively irritable (notice I said excessive, she usually has irritability anyways), and I couldn't reach anyone to find out what to do because of the holidays! First I stopped giving Kaylee the Lexapro, and the problems persisted so I discontinued the Singulair.

I just knew something still wasn't right but I couldn't put my finger on it, so to speak. Three days after we stopped the Singulair, Kaylee had hives.

Day after day this kept happening, each day getting worse, with Kaylee's hives getting bigger and her behavior getting worse. She started to get diarrhea and her nose kept on dripping and she was not sick. When I thought about it, I noticed a pattern emerging: it was happening after certain meals...Kaylee never displayed any with foods before, but now everytime she eats anything with strawberries she has an allergic response.

Now that Kaylee's immune system isn't needing to address her viral and yeast issues because of the medications she is on, her allergies are flaring up.

Right now I am scaring myself a bit, because I am wondering if Kaylee needs the Elimination Diet to identify any other possible triggers. Our number one priority in the NIDS Protocol is to cool down the immune system, and if the foods she is eating are causing an immune response, we have to find a way to decrease it. If her immune system continues to act up, and even more difficult, I believe that she may need the Rotation Diet to prevent any new allergies to food.

Maybe I will make a post explaining more about food allergies and more about the basics of immune system function soon. I need to brush up on some of it myself. I believe it is extremely important to understand the immune system if you have a child with autism because it is a key issue, if not one of the most imporant one.

If you want to do some research into food allergies yourself, check out the book Is This Your Child by Dr. Doris Rapp.

In the mean time, may God bless you richly with His wisdom! (James 1:5)
-Jennie

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...

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:

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

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.