Sometimes I freeze, just momentarily. I get trapped by hopelessness and I am paralyzed. My breathe falls from my chest and I can’t seem to suck in any air. What if she never gets better? What if what I have been doing with her isn’t helping at all and we are trapped in this pit.

I have no choice but to stop to encourage myself. Light always overcomes the darkness. Even the tiny flame from a single match will chase away the darkness leaving only shadows remaining.

My daughter is still here. Her mind is full and wonderful. I will build a bridge from her mind to the world and she will walk over it someday.

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Finally yesterday we got some relief from the watery diarrhea. I dropped all the medicine she was taking, started probiotics 4 times a day and started adding biotin. I suspect the biotin made the big difference. When I started thinking about biotin, I remembered that it not only fights yeast overgrowth but it can also cause constipation.

Sophie seemed very aware last night. She is actually tearing the house apart exploring. Seeing some progress would make all of this weeks carpet scrubbing worth it.

“It’s indisputable that (autism) is on the rise among children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates it’s got to do with a preservative in vaccines.” –John McCain, Texas town hall meeting, February 29, 2008.

McCain was responding to a question from the mother of a boy with autism, who asked about a recent story that the U.S. Court of Federal Claims and the National Vaccine Injury Compensation Program had issued a judgment in favor of an unnamed child whose family claimed regressive encephalopathy and symptoms of autism were caused by thimerosal.

“We’ve been waiting for years for kind of a responsible answer to this question, and are hoping that you can help us out there,” the woman said.

I am trying to find video of this. I will post it when and if it is found.

Sarah Paling spoke directly to families with special needs saying:

Our family has the same ups and downs as any other — the same challenges and the same joys.

Sometimes even the greatest joys bring challenge.

And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and advocate in the White House.

From one mom to another, I cried.

This story is reprinted with permission from Recovered from Autism. Thanks Erica!

Our Story

Kaiden was born July 5, 2001, a healthy 9 pounds, 10 ounces. He scored a 9 and 10 on the APGAR. The next day he developed a small fever and jaundice. I found out later he had a HepB vaccine without my knowledge and against my request. Despite persistent thrush and yeast rashes, my son flourished. He maintained growth in the 95th percentile, began very early babbling sounds, and began sleeping through the night. Except for persistent thrush and yeast, he was the perfect happy, healthy baby.

All H*ll Breaks Loose

At 9 weeks old, he had his first round of vaccines. Something intuitively made me question vaccinating him. I did some research but the internet was not yet what it is today. The day of the appointment, I talked to the doctor about it. We have an extensive history of reactions to vaccines. My brother completely lost his hearing in one ear after a vaccine. He also had severe allergies and asthma. I had a reaction to a tetanus vaccine as a child. In college, I was revaxed with the MMR. I developed symptoms of measles, mumps, and rubella. I was very sick. I then developed severe allergies to everything, Chronic Fatigue Syndrome, IBS, and other immune related problems. However, I never made the connection to the MMR revax until after my son’s ordeal. My oldest daughter also reacted to the MMR and began hitting herself in the face shortly thereafter and then developed sensory integration dysfunction.

The doctor negated my fears and spent 30 minutes convincing me to give my son the shots. I refused the HepB and he agreed it was completely unneccesary for a baby. The doctor emphatically reassured me the shots no longer contained thimerosal. I put my trust in him and held my son down for the shots. I found out later they did include thimerosol (September of 2001).

My son screamed basically non-stop from that moment on. He stopped sucking his thumb, stopped sleeping almost completely, screamed relentlessly, developed all over body hives and eczema, severe reflux and aspirating, and his chronic yeast and thrush worsened.

He ceased all babbling, and plummeted from the 95th percentile to below the 5th to off the chart for weight. He stopped having BMs (having only 3 in 2 months in the time right after his shots!) He developed food intolerances to nearly everything. He began headbanging as soon as he could crawl (at an early 5.5 months).

Confronting the Doctor

After his reaction, I noticed he was very gassy and colicky and figured he had developed a dairy sensitivity as my daughter had also developed this after her first shots. I eliminated all dairy from my diet (he was exclusively nursed) except baked in things. There was slight improvement (4 hours sleep, less crying). But he was still refluxing and aspirating terribly.

After many unhelpful trips to the doctor, I demanded to see a GI specialist. Our ped insisted nothing was wrong because (I kid you not) he said my son was “so good looking there couldn’t possibly be anything wrong with him.” He called him his “movie star baby” and told me I was over-reacting.

Shortly thereafter my son went 14 days without a BM and started spitting up bile. We got our GI referral. In the appointment with our doctor, I demanded to read the package insert for my son’s vaccines. The doctor stormed out of the room and came back in with the DTaP shot insert. He made a big deal of unfolding the insert and began reading the ingredients. He stopped, covered his mouth, nervously giggled, and said, “Oops, I guess it does still contain thimerosal.” He quickly folded the sheet back up, tossed it at me and said, “for what it’s worth” and walked out of the room. We never went back.

We had an Upper GI series and discovered severe reflux and aspirating. Also, at my ped’s recommendation, we had begun giving him rice cereal and mashed bananas to try to help with the reflux. He developed a little red dot hive next to his lip everytime he had the cereal so I stopped it. He also seemed worse when I had chinese food. The GI specialist determined there was soy lethicin in the rice cereal and that he was also sensitive to soy. He was right. I eliminated dairy and soy completely from my diet and he improved - sleeping 6 hours per night - no more crying - but still no babbling.

The GI specialist put him on Pepcid which eliminated the aspirating. However he continued to lose weight and stayed off the weight charts for a year.

A Name for the problem… Autism

Ironically, I had read part of Lisa Lewis’ book, “Special Diets for Special Kids” at the book store looking for casein free recipes and after reading her intro about her son was so freaked out I threw the book down and ran out of the book store terrified as it sounded so much like my baby.

As Kaiden got older, typical and severe autistic stims (self-stimulatory behaviors) became more apparent -headbanging 50 times per day, staring into space with no blinking or reaction, licking things, lining things up, raging, etc. He had severe food intolerances, PST (phenol sulfur transferese) deficiency, leaky gut syndrome, hypotonia, and a multitude of other issues (most of which I didn’t recognize until I read Karyn Seroussi’s “Unraveling the Mystery of Autism and PDD” and William Shaw’s “Biological Treatments for Autism and PDD.”

By July of 2002 when my son turned 1 year old - he was still off the weight charts despite eating well. He had chronic eczema, all over body hives, a weepy eye, and all the other issues. I was desparate and knew he was probably autistic because of his classic behaviors. He was headbanging about 50 times per day, had never played with a toy, didn’t interact with his 5 year old sister, and didn’t talk. He stared at the TV for hours at a time (if I let him) without looking away, did not respond to his name, had never pointed, and basically just wandered around the house all day. Despite this, he still smiled easily on his own terms.

At his one year check up his new doctor said, “You know this all equals autism.” I already knew. I went back to the bookstore and bought several books on autism. That day changed my life. I started reading that night and read three books in the next three days. It was like reading my life story. (See links for resources.)

At 13 months, he had started saying some words, calling his sister by name, etc. But by 16 months, he had stopped most of that. I could shout his name 25 times (I counted once) and he would not turn to look at me.

The Diet

In June, just before his first birthday, I took us down to 4 foods (I was still nursing him so I had to follow his diet) for 2 weeks (turkey, asparagus, pears, and sweet potato as my research indicated these were the least likely to be allergenic). Most symptoms rapidly disappeared. I reintroduced one new food at a time every 5 days until we worked our way up to 10 foods. By Thanksgiving he was doing remarkably better. He headbanged maybe 10 times per day, would sit and color for hours at a time (which to me was better than raging) and was a little more “with it.”

We could keep symptoms to a minimum if we ate only these things: rice, potato, pears, beef, chicken, pork, occasionally asparagus and brocolli, and pancakes and waffles made with rice, tapioca, and potato flour.

A Turning Point … Homeopathy

We began homeopathy treatments in November, 2002. By Christmas, he showed minimal behavioral symptoms of autism. But he still had a drunken sailor walk and occaisonal stims. He had about 5 words which were actually stims. However, he played with toys, engaged his sister, pointed to things all over the place and was finally “here!”

I received minimal help from our pediatrician. We had two developmental screens from our child development services and they always happened just after we did a food elimination so he was always improved at the assessments. He was assessed at 1.5 years old after we did the elimination diet and started homeopathy and they said he was probably no longer full blown autistic but was still PDD (Pervasive Developmental Disorder) at a minimum. We were put on the 1+ year wait list to see the developmental pediatrician.

We remortgaged our house to pay for medical bills. We did qualify for free speech, OT, and developmental therapy which the assessment found warranted. We found a DAN doctor who confirmed our suspicions and documented our son had high mercury, high arsenic, leaky gut syndrome, excess yeast, and tetanus titers 3 times what is considered immune after just one shot (they are supposed to receive four). He said our son was “a classic case of autism.”

By February of 2003, I eliminated the last of our highly phenolic foods (peaches) and all corn sources we had reintroduced as he had begun licking things and spinning. That brought us down to 7 foods (rice, potato, chicken, pork, tapioca flour, egg yolks, and pears) - occasionally he could tolerate asparagus and broccoli. Most of his “bad” behaviors disappeared and he began babbling and saying a few words.

Also in February, he developed what we think was a severe case of the “flu” and almost died. He spent two nights in the ER and was basically unconscious for three days. He raged with yeast rash and thrush and a high fever. Amazingly, he awoke from this after 5 days, sat up in my lap and pointed to my eyes, ears, nose, and mouth and said each word! We were flabberghasted! He did it twice. Afterwards, he was dramatically improved and no longer needed the Pepcid he had been on for 15 months. The homeopath and our DAN doctor believe it was a “healing crisis.” Who knows!

In the spring of 2003, we gave him his first dose of DTP remedy. The change was phenomenal. His personality really began to shine and he made huge leaps in development. His weepy eye cleared up. His hypotonia went away and his physical strength increased so that he could climb up on the furniture, etc. He would respond to his name on the first try and seemed to understand everything going on around him, although he was still mostly nonverbal.

His own Language and Yeast

Although the diet and homeopathy helped, Kaiden still had issues. His speech was severely delayed as well as disordered. What little words he did use, were made up words other people could not understand. For example, “ticky-tick-ah” meant pears, “bah hip” meant sheep yogurt, “hmmhmm” meant music, “oh” meant yes, etc.

He still had leaky gut problems, and occasional headbanging or spinning if we tried a new food. In July (at 2 years old), we began giving him Culturelle, a probiotic, Lactobacillus LL. The change was dramatic. He had his first formed BM in over 4 months. Within 3 days he was babbling and his language jumped from 9 months to 15 months. He had about 20 words. I also discovered I had my own yeast issues. Because I was still nursing him to try to keep him as healthy as possible, I had to eat what he did. I also began the probiotic with much improvement.

We also began Kirkman’s Super-Nuthera, DMG for speech, and Carlson’s Cod Liver Oil. He also continued with cranial sacral therapy which he had received since birth. We saw good improvement with each. Later we added NoFenol enzyme which allowed him to eat bananas and peaches again. In the fall of 2003, we discovered sheep yogurt. Kaiden tolerated it with no symptoms. It caused considerable yeast die off but further improvement for his gut. Tired of the same old foods, he ate it with every meal for weeks. His physical appearance improved and we saw less and less raging and tantrums from yeast.

A Return to Normal Life

In October of 2003, he was doing very well. He had about 35 words but used mostly sign language to communicate. He learned over 50 signs in 2 days from Signing Time videos. He still had occasional stims, still had rages and headbanging, and ate only 7 foods (rice, potato, pears, chicken, beef, bananas, and sheep yogurt). We discovered he could pick out states on a map, knew all his colors, all his shapes, and was very bright. He weaned himself at 27 months. His only drink was water. The only rice milk he could drink was discontinued and he refused homemade.

Late October, we again dosed him with the DTP remedy. The change in him was absolutely dramatic. Within 3 days he had completely potty trained himself (at 27 months). He went from never having put on a piece of clothing to completely dressing himself every day. He began talking in full sentences. His language jumped up to age appropriate. I lost track counting at 150 words. He stopped almost all stimming, and he just blossomed. With a month, he presented like a normal, happy toddler.

On Christmas, he excitedly ran downstairs and opened all his presents, enjoying every one.. .talking all the time. Just 6 months before at his 2 year birthday he had sat quietly and happily watched his sister open all his presents. At Christmas, not only did he open all of his, but he wanted to open every one else’s as well!

In January 2004, at his assessment with Child Development Services, he no longer qualified for services as he was age appropriate and tested out advanced in many areas. He sleeps 11 hours per night, is incredibly happy, and a true delight.

In Feb. 2004 while driving in the car he told me all about how “bears hibernate in the winter, lions roar in the jungle, and baby kangaroos ride in their mommy’s pouch.” At bedtime, he would sneak out of bed and turn on his light to read books in his bed. Every day he surprises and delights us with new stories and new thoughts and ideas. His speech is extremely articulate and his inflection is heartwarming. He has also become very loving and snuggly. Whereas before he did not like his fingers, toes, and ears touched, today he will happily climb on my lap and snuggle in. One of the happiest days of my life was when he recently held my face in his hands and said, “I love you, Mommy.”

We began GSE sometime in 2004 with tremendous results. This stuff is liquid gold and the whole family benefits from maintenance dosing.

I believe the homeopathy played a significant role in his recovery. It’s hard to tell how much of the initial improvements were from diet or from the homeopathy but I think each played a different role. It has also worked wonders for me and our daughter.

In September 2005, Kaiden was almost completely recovered. He attended traditional preschool with no mention of autism. He has many, many friends and is extremely social. He loves striking up a conversation in the grocery store and is a happy, smiling, loving child. He is extremely well behaved and is just a delight to be with. He is learning completely on schedule and is advanced in many areas.

With the help of NAET, which was done in 2005 and 2006, he now eats a regular diet. We saw some minor issues when introducing new foods which evened out after more NAET (acupressure) and continued homeopathy. We continued to deal with yeast as well and even today maintain probiotics (Culturelle) and GSE on a semi-regular basis as needed.

I believe both the food and gut issues were due to the mercury toxicity. Thanks to homeopathy, he no longer requires the No Fenol enzyme.

As of early 2007, I consider him completely cured of autism. He has no food sensitivities or allergies and eats a normal diet. He is advanced in his classroom and scores above average in all social categories on his report cards. He has many friends, is very social, empathic, and bright. Please see the update section for more recent information.

If you have a recovery story to share, please send an email to sarah at wakingsophie.com , replace the at with @

It part two of Supplementing for Autism, we discuss getting basic nutrition to our children. So what comes next? Do we start trying to treat specific issues, do we try supplements that we know have helped others or do we start removing heavy metals?

To share my experience with this, I first began by seeing a DAN doctor who gave me samples of 7 or 8 different supplements that were the latest greatest fads. It had nothing to do with my child’s actual symptoms. I gave each supplement for 3-7 before moving to the next. The result, none of the supplements had any positive effect and I had wasted another month.

All that being said, I do think that those supplements are worth trying, but treating actual issues first makes so much more sense to me. When I go to the doctor because I have a broken arm I expect to get a cast not something to improve my memory. Not that improving my memory wouldn’t be great, I would like that too, but lets deal with immediate problems first.

Since I don’t know your child’s issues, go to this page http://autismshare.com/symptoms.htm. It has symptoms and treatments. Take the most pressing problem and start trying out solutions. You can also check out yahoo groups. You can find a ton of information and support. Here are the ones I frequent
GF/CF Kids
MB12 Valtrex
Autism Mercury
Enzymes and Autism

Try going to the yahoo groups and ask for help for specific problems. Experienced parents will be able to guide you through trying a treatment for a specific issue, or send me an email. I am always happy to answer any questions I can. sarah at wakingsophie.com, replace at with @

Next in this series I am going to tackle supplements to treat yeast.

Part 1
Part 2

We all have heard by now that Sarah Palin has a child with down syndrome. The question is, if McCain is elected how will this effect families of children with autism? Obviously we would have a more sympathetic voice in Washington. As her child would grow during her Vice Presidency, she would be learning about the huge expense that comes with raising a special needs child. That I am sure will benefit us.

My real question though, where would she stand on vaccinations? I know that she has supported the Flu shot

NOW, THEREFORE, I, Sarah Palin Governor of the State of Alaska, do hereby proclaim November 2007 – March 2008 as:

Influenza Vaccination Awareness Season
in Alaska, and encourage all Alaskans to get a flu vaccination to protect themselves, their families, and their communities.

Does that really mean anything though? That was before she had a special needs child, and if you are reading my blog I am sure you know how that changes everything. Also, has the issue of vaccinations causing autism actually been presented to her?

In the autism community we basically have 2 sides, those who believe autism is linked to mercury poisoning and those who don’t. Which side do you think Sarah Palin will fall into?

A Week of Diarrhea, great title for a blog post huh?

Sophie started Gentamycin with vancomycin a week and a half ago. Within a few days she began having horrible diarrhea. We tried decreasing the frequency to no avail and we finally dropped the medicine a few days ago. I actually dropped all of her medicine and I am only giving her vitamins and lots of probiotics.

Wednesday she had blood in her stool. It was probably 1/2 teaspoon. My husband was gone with our only car so I could not run to the ER. I called him instead to come home and called the doctor on call at the clinic where our DAN practices. The doctor called me back within a few minutes, right as my husband was pulling up with our car. This doctor had called the DAN to confir with her. My DAN advised that she had seen this quite often and if it wasn’t a huge quantity, or continuing, that I probably didn’t need to panic. Of course I already had panicked, but these words were soothing. I did not take her to the ER and she only had a little blood in the next diaper and none after that.

After studying on the internet, I found that gentamycin is known to cause bloody stool. The thing that a doctor would worry about would be the development of clostridia, but with the vancomycin on board that isn’t an issue.

This week has been really rough. She developed big raw and bleeding sores on her bottom, I have changed runny diapers every half and hour at some times and I have scrubbed carpets for hours this week. I will have to call in the pros for my carpets. Today if Sophie is still having problems I will be calling in the pros for her too.

My husband was part of a mass lay off of his company, so our insurance ends tomorrow. He will be competing with at least 100 other people laid off from his work with similar skills for jobs. I am so glad I have God who provides.

For this Wednesday, I thought I would do something a little different. I have found many sites that post autism recovery stories so instead of posting one this week, I thought I would post links to the pages that have inspired me. Here are pages and pages of hope: http://featuresblogs.chicagotribune.com/features_julieshealthclub/autism_recovery_stories/index.html

http://www.generationrescue.org/testimonials.php

http://www.gfcfdiet.com/Successstories.htm

http://www.autismrecoveryvideos.org/

http://www.danasview.net/recover.htm

If you have a recovery story that you would like to share, please email me sarah at wakingsophie.com

With every child being different, it is hard to say where to start with supplementation. So lets break it down a bit. There are 3 goals involved in giving supplements, to improve general health, to treat issues and to treat the underlying problems. In this series we will look at these goals, one at a time. This post will deal with general health and obtaining nutrients.

One of, if not the, greatest obstacles to most children with autism’s health is the inability to properly digest food to obtain the nutrients. To answer this problem there are a few options. One is to introduce enzymes to break down the foods, another is to give foods that are easier to digest and another strategy is to supplement the vitamins and minerals they are not getting. The most successful approach seems to be to do all three.

So which Enzymes?

I personally like Houston enzymes. I give Sophie TriEnza which is a mix of the 3 main enzymes offered by the company. One enzyme takes care of the proteins for gluten and casein, one that helps with phenols and also breaks down the hard shell of yeast making it easier to kill and one that takes care of everything else. There are plenty of other brands of enzymes people have success with. Some children will not be able to tolerate trienza so you can try the 3 enzymes from houston seperately or try a different brand. Enzyme Stuff has great info.

I personally know a woman whose child was showing autistic symptoms, not officially diagnosed, but all of the symptoms stopped after beginning houston enzymes. She now has a totally neurotypical child.

That doesn’t heal your child, proceed to step 2

Diet

The gluten free/casein free(gf/cf) diet has caused many miraculous recovery stories. You can read some of these stories here http://www.gfcfdiet.com/Successstories.htm. Many people end up avoiding many other foods because they also cause problems for their child. The yahoo group GFCF Kids. Provides wonderful support of the diet and all other issues of biomedical treatment.

Supplementing for health

A good multivitamin, especially one designed specifically for children with autism, is a great way to help support a child’s nutritional needs. Kirkman’s labs has a very popular multi called Super Nu Thera. Super Nu Thera is formulated with very high amount of vitamin B and magnesium which enhances the effects of b vitamins. It was made for children with autism by request of the Autism Research Institute in the late 60’s.

Another popular multivitamin is made by Brain Child Nutritionals. I do not have personal experience with their products, but have heard good things. Another option is Juice Plus. This was to me by our DAN doctor.

One issue many parents experience is children with autism often have problems tolerating many different foods, vitamins, supplements and minerals. Many children will not be able to handle multivitamins. This was the case with Sophie. As an alternative, I had to buy vitamins and minerals separately and give them one at a time to make sure she could tolerate them.

When she didn’t tolerate something, the reaction would be huge melt downs. She would cry an yell and be extremely emotional. It sounds a little like die off from yeast or bacteria, but if you experience both with your child you will be able to tell the difference. This is more extreme then die off.

Buy everything in trial size or ask for free samples from the companies. If you have to go the route I did with trying one vitamin at a time, look at the ingredients of a multi and use it as a list of things to try.

One more quick note, B vitamins have been known to make children hyper, sometimes no phenol enzymes will help with that.

Now that I have all that out of the way I will start discussing the other supplements that are recommended for children with autism one at a time in this series, Supplements for Autism.

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