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!

I'm Ba-ack!

I am still alive and I have a lot to say, many good and exciting things at the horizon! I will be posting again soon.

Until then blessings be upon you...

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!

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 and Mommy Update (A long-winded post)

When I have been thinking about what to post on my blog lately, I feel like I am a dry well. Not because things aren't happening, but because I am totally and utterly spent. For weeks I have been in survival mode. My creative juices were drying up and I felt like I couldn't write a good post. Exhaustion and a perfectionism like that make for a no-posting kind of blog.

I have been determined not to make this a place where I vent and complain about my circumstances, my purpose for this blog is to honestly document my journey in living with and attempting to heal my daughter's autism.

So here is an update of whats going on: Kaylee is doing great! I can't say it enough. She is so easy to get along with, tantrums are nonexistant, she is effortlessly potty-trained, she's happy, interacting, playing, in the "that's mine!" stage.

As for me, I am struggling. This story started over two months ago, Kaylee's behavior was impossible and I was frazzled. Every free moment I was either taking Kaylee to stressful allergy testing appointments, attempting to cook new foods for her (and failing) and there were many other commitments I was trying to keep, besides caring for 3 very young children.

I was so stressed out I felt like I couldn't rest. Even if I was sitting still, I felt worried and wound up. I felt like I was always on the edge.

I felt so alone, I had no peace. When I read the bible it felt like hollow words to me. The words of my prayers seemed to drop like cement the minute they left my lips. I felt weary and burdened.

I remember telling Dan, my husband, I had this vague sense that something was really wrong with me, but I couldn't figure out what exactly it was. A few days later a peculiar rash appeared on my legs, and my feet swelled up. I was concerned but when I woke up the next day the rash had gotten worse and spread.

I went to the doctor and finally after many tests they figured out that I had vasculitis. That means my immune system was attacking my own blood vessels. The doctors had to check me for some serious diseases, like lupus and cancer, which came out negative. It was quite a scare for me.

But even today, 6 weeks later I am left with the aftermath of this illness. I have very painful sores on my legs and feet and its very difficult for me to get through each day. I have to go to wound care specialists a few times a week, because my skin isn't healing very well.

I am not sharing this to get pity, I am just trying to be real about what my life has been like. Times have been hard lately. The most difficult part was when I felt like God was so far away. The truth is, it was me who was far away.

It occured to me though, that everyone goes through hard times. As far as I know, the death rate is 100%. Everyone's health fails at some point in their life. Being a christian does not save me from trials and troubles. That is a far cry from what some of the pastors are preaching today. How disappointed are so many people when God doesn't give them what they want or when He doesn't save them from their circumstances? How many will have a love that waxes cold because they only know the gifts and not the Great Giver?

I think these circumstances brought me to a new level of fellowship with God. I feel pleasantly broken. Yes, that's the best way I could put it. I was very humbled by my circumstances and I reached out to God and accepted with joy, His will for me at this time. After that I felt so free!

The Good Lord is forcing me to rest (I have to have my feet up as much as possible). He is forcing me to trust Him. He is forcing me to ask Him for strength to get through each day (sometimes its each hour). He is forcing me to reassess my priorities. Yes I may have sticky floors and two bathroom sinks that need cleaning. I am learning to be okay with that.

Gee I think I have been all over the place on this post. I apologize. It's the best I could do right now.

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...

A cookin' fiend!

That's me lately...I have been burning things up in the kitchen. My wonderful husband was my hero and helped me late at night, too. (It's really hard to cook while holding an 11-month old.)

Last night we made Gluten free/Casein Free Meat Puffs. I didn't want to put a picture of them up here because they look gross! They taste awful too, but Kaylee loves them and we hide beef, carrots, sweet potatoes, and zucchini in them.

The night before that we made a bunch of GF/CF/Soy free/Egg free pancakes, too. Then I freeze them, because it is so convenient (and necessary!) to have stuff already made and ready to pop in the microwave.

The reason for all this cooking is that I am yet again cutting another ingredient from Kaylee's diet because I have to be totally sure there is not a food allergy going on and that ingredient is soy. And soy is in EVERYTHING! So basically I have to make everything she eats from scratch now. But that's ok. She's more than worth it!

Dr. Russell didn't tell me to do this, he told me he doesn't think her diet is the culprit here for her allergies and the return of her "bad poops". I think he's right but I need to be totally sure. I will be finding more out about that very soon, I believe.

So that is all for now...May God be with you!

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