I hear her sing now. Not just one song, she sings lots of songs. I have always sang to my girls as I am putting them to sleep. My special song to them is Moon Shadow by Cat Stevens. I hear Sophie sing this song to herself now. The other day she hopped on to my lap and said “Moon shadow Mommy”. I can’t describe how this feels.
I have always said that she would be healed, that the biomedical treatments were helping and that eventually she would recover, but inwardly, of course, I have had fears and doubts. No matter how much I have tried not to doubt, when day after day went by of her being in her own little world or days of her crying in pain, of course I was afraid of it never ending.
I had no idea it would take so long to heal her. It was Thanksgiving, 3 years ago that we began to realize something was wrong with our little girl. I remember a certain moment that seemed frozen in time where I watched her sit in the middle of the floor surrounded by her sisters and cousins and they were all playing and laughing while she sat with a few toys picking them up and putting them in a line over and over. Then her grandmother asked for a picture and I had to hold her up saying “look at grandma”, knowing she wouldn’t look at her but pretending that there was a chance. I don’t remember what excuse I used of why Sophie wouldn’t look.
I wonder where that picture is. It is strange to think that a picture actually exists of that moment , the very time my heart was being ripped apart. The ride home that night was quiet. My husband had seen it too. I shudder now to think of that time. It still seems like a nightmare. I never even let myself think of things so horrible and here it was happening, I was losing my child and being told she would never come back, she would never marry, she may never be potty trained, have friends or tell me she loves me. All of my dreams were being crushed. All I could do is cling to God and believe that he would not leave me in this pit, and He didn’t. He is faithful.
Sophie is healing right in front of my eyes. It is hard to put this into words. She has made so many improvements but explaining it to someone else is difficult, but I will try my best.
She is now “present” almost all the time. Sometimes she is still spacey. When I am doing treatments that make her yeast flare up or when I become lax in giving her supplements to keep yeast down she becomes spacey and goofy. She will run giggling at nothing or yell and cry and spin in circles. Most of the time she is not like this now. That is now the exception and not the norm. She still hum/moans a lot when she is concentrating. A person who does not know her would see that she has special needs right away.
She answers questions sometimes! I asked her “what is that?” about a toy she was holding and she said ” a girl” . She also told her grandfather that is was a unicorn that she was holding. She also asks for food, drink and when she wants to go somewhere. This is a complete break through!
Her eye contact is wonderful. she looks me in the eye all the time. It is so wonderful to be seen by her. She has relationships with people now. She plays with her sisters. She likes spending time with them and her grandparents. She plays with toys appropriately. At this very moment she is sitting next to me playing with a Dora backpack and she stopped and looked me right in the eyes and wrapped her arms around my neck and pulled me in close for a tight hug and said “my mommy”. Thank you God.
I attribute this to chelation. I see a huge difference when I am chelating and I see improvements after almost every session. Keeping the yeast in check with biotin and probiotics and sometimes GSE also makes a huge difference.
She is at the point now where I can start rehabilitating her. She is here not lost in her own little world. She has lost more than 3 years of the very formative part of her life. It is time for her to do the emotional, mental and social growing that happens between 2 1/2 to 6 years old. She has lost a lot but it seems selfish to grieve that when we have been given so much.
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I don’t want to think about how long I have been doing this. A lot longer then planned that is for sure. Within the last 6 months I have scaled back dramatically on treatments for Sophie. I was tired. I have been working from home as a web developer since my husband was laid off. I just couldn’t manage everything and thinking about it logically, I felt like it was time to give myself and Sophie a break, so here is what I changed.
Diet
I dropped the gf/cf diet…gasp I know that is a big one. Sophie had been on the diet for around 2 years and when I first put her on the diet I did see positive changes, like she stopped lining up toys, but after about 1 1/2 years I didn’t see a huge change after slowly taking her off of the diet. I could see some regression when I would add back gluten or casein for a long time, but now I don’t see a difference and the pay off has been worth it. Sophie is now trying all kinds of new foods! Before I could count the foods she would eat on one hand now she is trying almost everything.
Chelation
I now chelate on a different schedule. I had previously chelated on Andrew Cutler’s schedule which includes giving chelation supplements every 3 hours during the day and every 4 during the night. My new schedule is higher doses 3 times a day. I was worried about this one, but after trying it for many rounds now, Sophie seems to do fine with it and it is sooo much easier that I am more consistant with it.
Supplements
I am giving less supplements. I evaluate what I am giving her more closely, not just giving what worked for someone else but I have slowed down and I really look at whether a supplement makes a change in Sophie. Much of this has to do with a lack of extra money to spend. I am very limited now and so I buy what I know she needs and when I try new supplements I am more careful to evaluate them.
The changes I have made may not be for everyone. I would not have given my daughter treatment in this way 2 years ago, but this is what I can manage at this time. This schedule allows me to still pursue what I think is going to be the real cure for Sophie- removing heavy metals from her system and then supporting her system while it recovers.
Yes this is not one of my introspective posts on living with Autism. If you are looking for those please scroll down. This post is an in the trenches, hard core guide describing a very unpleasant issue and how to treat it.
Sophie has dealt with constant constipation, like many children with Autism. At this time I have also been giving her large amounts of biotin to combat intestinal yeast and this adds to the constipation as does yeast. This culminated into a major impaction.
Sophie normally only has bowel movements every few days, many times up to 5 days. I give her magnesium regularly to try to help this situation, unfortunately this did not help this time. She became impacted.
She had not gone in a week. I had already increased her magnesium greatly, with no results. She was pushing on her stomach and straining every few hours with no results. I tried a children’s glycerin suppository, we have used these every once in a while when needed. This was they little bullet type, not the liquid, they seem to work a little better with Sophie. The result this time was Sophie pushing until she vomited with no results in her diaper.
I went to the pharmacy and picked up some stool softeners/laxitives, a few different brands, some for children and Dulcolax which I read about being given to children in this situation. The only form of Dulcolax they had was a pill, which Sophie doesn’t swallow and these can’t be crushed. I figured I would cross that bridge when I came to it. I started with a children’s formula that was a liquid and said it would produce in 6 to 12 hours so I gave it and we went to sleep.
The next morning, nothing. I decided it was time to move to the big gun, Dulcolax. The pills are really small so I came up with the strategy of giving it with a bowl of ice cream. The ice cream was pretty soft and I gave her a couple of bites close together so she didn’t have much time to chew, just swallow. Then I put the pill on the spoon with another good sized bit before she had totally gotten rid of what was in her mouth and sure enough she swallowed it with out chewing it up! Yeah, one victory!
The Dulcolax also had a 6-12 hour wait. So another day passed. Still nothing.
We made a late night call to her doctor and she sat miserably crying and straining for somewhere around 10 days now. I told him all of the things I had tried and here are his instructions.
The next thing to try was an adult size glycerin suppository. If that doesn’t work try a children’s fleet enema. The last option was to try to manually break up the mass with a lubricated finger in a glove. I had already read about this online and have quoted below:
Precautions
This digital breaking up and removal of impacted stool can potentially damage the mucous membrane linings in the bowel, and the stimulation to the vagus nerve that has endings in the rectum can cause heart irregularities. It is therefore a procedure that is undertaken only with extreme caution. Most often, nurses remove fecal impactions upon receiving a physician’s order, or under a physician’s supervision.
Description
As gently as possible, the nurse inserts a gloved, lubricated index finger and massages around the edges of the impaction, gradually working the gloved finger into the mass to break it up. The broken-up pieces of stool are dislodged by carefully working them downward toward the end of the rectum. During this procedure, the patient should be checked regularly to assure that there are no untoward effects such as weakness, diaphoresis or clamminess, or changes in pulse rate.
This scared me I really did not want to attempt this on my own. My doctor said that what I would do is go around the edge and break off a little at a time.
I tried the adult suppository and the next morning the enema with no results. I decided to take my daughter in to the doctor for the final step. Unfortunately after an hour wait, he told us to take her to an emergency room to treat her. When we arrived there we found it packed and her 2 people talking who had been waiting for more than 6 hours. We decided we would try the final step at home.
We picked up latex gloves and KY Jelly. We laid down some towels and my husband held her as she leaned against his lap. I inserted a gloved finger and found the mass and followed the instructions of going around the edge. She was also pushing. I made sure that everything was out that I could feel. The whole thing took about 5-10 minutes, It was horribly uncomfortable for her. She was exhausted and needed a bath at the end, but what a relief.
3 days later I had to give her a children’s suppository to get her to go again. I have put her on miralax and after the last suppository she is going by herself again.
I now have a technique for getting things into a fighting child’s rectum. Never thought I would be able to say that. I will share it with you now.
Don a cowboy hat. Lay your child on there left side, some of the suppositories call for the left side I am not sure why. Climb on top of your child facing their rear, on your kness, trap their stomach or hip between your legs, not really tightly, but so they don’t have enough room to roll. grab their top leg and that is as good of access that you are going to get. YEEE HAW!
Remember to be gentle when inserting anything, you can cause damage if you are not. Also remember I am not a medical professional, just a mom. Consult your doctor.
I feel the now familiar weight in my chest, more grieving. This has been lingering and growing for a while and now it has arrived in it’s fullness. A silly little milestone is close to passing and I have to accept that it will be meaningless to my sweet little girl.
She has a loose tooth.
I feel foolish that tears are now running down my cheeks as I type about such a small thing in the scope of a lifetime. It is just a little tooth, but to me it is one more loss. One more thing that I have to accept and choke down. The reality that it will pass by as less important than it is to most kids.
She goes through so much everyday, if any child deserves this little bit of childhood magic it is her.
Will she even see it? Will we just notice one day that it is gone and find it on the floor, dropped with little thought?
We will put on the now routine show of putting it under her pillow like we have for all of our other kids. We will sneak in and replace it while she sleeps looking like an angel, and we will wake her up in the morning and show her something meaningless to her, knowing she probably doesn’t understand.
I know how much we have to be grateful for. She is beautiful and sweet. It is like she is prolonging her babyhood and I get all of the benefits and trials that brings. She will still cuddle with me for hours. She isn’t busy playing with friends. But there is also saddness in the fact that she will cuddle with me for hours and she isn’t busy playing with friends.
I must cling to the thought that she will one day be healed and this will be a less painful memory. I have to get back to the fight that many believe is impossible. I will remember all of the mothers around the world that are fighting with me and the bond that we share. She might not have remembered her first lost tooth anyway, right?
Related Post- http://wakingsophie.com/it-finally-happened-the-tooth-came-out
Sophie is doing well. We have done 4 rounds now of chelating 3 times a day. So far it has been wonderful. I am still giving low doses, 25mg of ala and dmsa. The effect doesn’t seem to be as intense, but I am seeing changes again! More communication.
Of course a couple of months ago, we went through a new treatment of antibiotics. I think it was very detrimental. I will post on that separately though in the next couple of days. Also I have been working full time as a freelance web developer. It has been very difficult to try to manage my time. My husband was laid off recently, so this is a way to pay the bills. I am struggling to juggle caring for Sophie, homeschooling my Sophie and Alena and caring for my home.
So here is my confession, the house is a wreck, homeschooling is sporadic and best, but secretly I am enjoying the distraction. It has been 2 years now of complete focus on helping Sophie, and of course that is still on the top of my priorities, but the stress of constantly thinking about it is so hard. My mind gets to wander now, lost in php code and style sheets and javascripts.
Of course I feel guilty. I always feel guilty for one reason or another. I never feel like I am doing all that I should in some area of my life. If I can’t find a area that I am presently lacking in, I can alway turn to the past and all the things I should have done to feel bad about. Yeah, like that whole gut feeling about vaccinations that I ignored.
Time to push all of that silliness aside. I am doing my best. God’s grace always saves me from my huge faults.
I received this email yesterday and wanted address it.
I’m sure my son has yeast issues. How much of the different components do you give? And how will I know when to move on to the next step? Thanks for your time.
I am not a doctor and urge you to seek medical advice for any of your health problems. With my rear now cover, here is what I do step by step
I would first start my child with 1/2 capsule, twice a day, of No-Fenol enzymes by Houston Enzymes . You could also use other anti-candida enzymes, but I am not sure on the dosing, just check the label. If you are already using TriEnza it already contains No-Fenol so skip this step.
After 3 days, to make sure they are tolerating the enzyme, 1/2 capsule of probiotic- twice a day. Watch closely for die off symptoms, (flu like symptoms), if they occur give 1 or 2 capsules of activated charcoal.
After 3 days, to make sure they are tolerating the probiotic, I would add 2 drops of Grapefruit seed extract twice a day. Watch closely for die off, (flu like symptoms), if they occur give 1 or 2 capsules of activated charcoal an hour or 2 after the GSE.
If there is no problem tolerating the probiotic, then I would wait a couple of weeks to add the biotin. If probiotics are not tolerated, add the biotin in it’s place.
Here is what my schedule would look like
Day 1-3
- 1/2 capsule No-Fenol 2X per day (this amount will not change)
Day 4-6
- 1/2 cap. No-Fenol 2x per day
- 1/2 cap. of probiotic 2x per day
On day 6 increase to 1 cap of probiotic 2x per day
Day 7-9
- 1/2 cap. No-Fenol 2x per day
- 1 cap. of probiotic 2x per day
- Give 2 drops of GSE 2x a day with the No-fenol. Give the probiotic 2-3 hours later.
If a lot of die off occurs, give activated charcoal and stay at this dosage a little longer.
Day 10-12
- 1/2 cap. No-Fenol 2x per day
- 1 cap. of probiotic 2x per day
- Give 2 drops of GSE 3x per day
Day 13 and on
- 1/2 cap. No-Fenol 2x per day
- 1 cap. of probiotic 2x per day 9 (you can increase this to 3x a day)
- GSE 3x per day.
Increase the amount of GSE by 1 to 2 drops every few days until you feel like the yeast is under control. At that point, you can back down to a maintenance dose of 2 drops, a couple of times a day, or stop it completely. I would keep the probiotics on board. The no-fenol is optional, but it does have benefits beyond yeast. If my child seems to do better with the no-fenol, I would keep it, if not drop it.
I have put together a amazon store with all of the products I have mentioned here.
How to Treat Yeast Overgrowth-(Supplements for Autism Part 4)
Date: Tuesday September 9, 2008Posted in: General, Supplements
I have not heard of a child with autism that doesn’t have a yeast problem. That being said, one could exist and if you treat yeast and there is not an overgrowth issue or your child already had a bacteria issue, you can end up with major bacteria overgrowth. Adding probiotics will help to contain the bacteria and if you are sure there is already a bacteria issue, treat for both.
How do I know if my child has a problem with yeasts?
There are lab test to check for yeast. Great Plains Labs has a test that gives an in depth look at yeast and bacteria, it is call an Organic Acids Test or OAT. There is also the spit test , though I cannot testify to it’s accuracy.
I believe the most accurate way to know if your child has yeast is to look for the symptoms. Here is the list:
- spinning
- flapping
- gas & bloating
- constipation
- hyperactivity
- spacey, inattentive, and fuzzy thinking
- yeast infections (vaginal, nail fungus, athlete’s foot, or thrush)
- irritability
- acting drunk
- inappropriate laughter
- food sensitivities
- digestive problems
- itchy areas (genitals, anus, ears)
- red ring around anus
- scaly patches on skin (ears and scalp)
I am sure there are more symptoms, but these are the ones I could think of.
How do I treat it?
This is how I treat yeast using naturals.
First start with an enzyme that will break down the hard shell of the yeast. I use No Fenol by Houston Nutraceuticals. Some other brands would be Candidase, Candex and Candizyme.
Then use something to kill it. Grapefruit Seed Extract(GSE) is very effective. Oil of Oregano will also kill yeast along with bacteria and garlic kills yeast. I use GSE, although it is absolutely HORRIBLE tasting. You can hide it in orange juice, yogurt, chocolate ice cream, any citrus drink. Start with 1 or 2 drops- 2 or 3 times a day and slowly work up, watching for die off*.
Then Add biotin. Biotin is produced by good bacteria in the intestines. From what I can gather it helps to keep yeast from clinging to the walls of the intestines, becoming the more invasive from of candida. I would start somewhere around 200-300mcg 2 ot 3 times a day and work up. It can also cause constipation, so you may want to give it with magnesium. My daughter has taken up to 10mg (10,000mcg) a day.
Finally Give probiotics. Probiotics are the good bacteria in our digestive system. They keep the bad bacteria and yeast in check. We are trying to restore the balance of good and bad bacteria. I use pro-bio gold by Kirkman labs and Therabiotics by Klaire Labs, but the second one requires physician approval. I give 1 capsule 2 times a day, sometimes more.
Keep a low sugar diet. Sugar feeds yeast. There is a yeast diet that cuts out all food that feeds yeast. The SCD diet is also said to kill yeast because on it you only eat simple sugars so everything is easily digested, not leaving fermenting food in your system.
*While killing yeast, die off symptoms may occur. The symptoms are fatigue, brain fog, gastro-intestinal distress such as nausea, gas, bloating, diarrhea or constipation, low grade fever, headache, sore throat, body itch, muscle and / or joint soreness or pain, feeling as if coming down with a flu. These are a sign that large numbers of yeast are being killed and when they die they release toxins. Activated charcoal will help by absorbing these toxins, but the best way to deal with this is by going very slow.
I have also used prescription drugs to yeast. I will discuss these in another article. Certain things will also cause yeast to flare up, like chelation and viral treatment.
Here is a page where you can buy all of these things
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.
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.