Sophie made gains in all areas except for health where there was a bit of decline, mainly because she is now some what destructive, biting objects when frustrated.  Also the constant constipation issues brought down her score in that area.

I want to share her improvements. Sophie seems much more present. She isn’t off in her own world anymore. She will look at us, almost always, when we say her name or ask her to look at us. Her singing is back! I hear her precious little voice singing again. She is also counting again and she is back up to 20 where she was when autism took her away from us.  She plays with her sisters a lot, granted, she doesn’t share and she controls the game, her sisters adore her and don’t mind a bit. She has relationships with people. We have moved into our parents house and she spends time with different members of the family.

I attribute the improvements to chelation. I am using ALA and DMSA, 100mg, 3 times a day 3 days a week.  I also have her on probiotics, tmg, folonic acid, mb12, biotin, vitamin c and miralax daily. I use GSE and Milk thistle when chelating, the GSE for yeast control and the milk thistle to support her liver.  You can find most of these things here http://astore.amazon.com/autishar-20

Sophie’s previous test scores

Autism test

Supplements

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.

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 have been giving her a drop or 2 of GSE with the ALA I use to chelate, but I just can’t stomach giving her more than that anymore, the taste is soooo awful. Well I posted on the gfcf yahoo group and a member mentioned giving more biotin. I was giving around 3000mcg (3mg) already, but this member pointed out that a b-50 has 50mg of biotin. Well I increased the biotin to around 15mg and that has made a huge difference.

She seems also to be constipated, probably impacted right now. I am increasing the magnesium which I would always do with biotin, because it can also be constipating. I have been using magnesium glycinate because the citrate form seems a bit rough on her system, and would cause diarrhea, I am thinking this might be welcomed right now so I may try the citrate for the next couple of days. I will update on how this works.

I feel like I am always chasing something just out of my reach. How many times have I saved money or waited through adjustment periods to add the one new supplement, hoping that it would have the effect it had on some other child and she will wake up and be cured? One after another they fall, like the clean dishes I spend the end of my day forcing myself to wash.

Yes, I am being gloomy again, but more than that, I am pondering. How much am I missing? Sophie is 5 right now and as much as I want her to be the 5 I dreamed of for her, that isn’t what I have. As much as I want to be that perfect mom with a perfect home and a perfect marriage that isn’t what I have either, but what I have is pretty good.

It is so easy to be lazy in my thoughts. It is easy to let life’s burdens make me feel tired and worn down. It steals the joy of my triumphs way too soon. This is the biggest battle I am fighting, to keep my mind disciplined, to counter the thoughts of hopelessness and to see the grasping for wind as what it is.

How much of the beauty of every day will I miss? How much of my little girl’s childhood is fading as I chase after the childhood I want for her?

Right now she is here and she is 5. She loves to snuggle and hates puppets. She screams and giggles when the wind hits her on breezy days and she thinks the word “oops” is hysterically funny. She is my precious Sophie.

Lord, help me to see the divine in the every day, help me to find the treasure that you have hidden for me in every part of my life, don’t let me miss any sacred thing.

I knew it would be soon when I saw the tooth earlier that day. I even thought about pulling it out just a few hours before she lost it, I knew it was just dangling by a thread. It had taken so long to come out I almost felt like it was holding on for me and for her, waiting for her to have more clarity so that it wouldn’t be a empty meaningless event, but there it was a hole where her baby tooth use to be.

We searched the house, I was sure she hadn’t lost it before the sandwich she had just eaten. We are pretty sure it was swallowed. She seem oblivious to it all.

I felt empty and just worn out. The war to remain positive and to have faith that God will guide my hands to heal my child is a tough one and I have lost another battle. Autism has stolen her first tooth and everything that goes with that.

I determined to not let this be a crushing blow. I feel the pain of greif, but I will only allow this to be a ripple in my soul, not a wave that will over take me. I have determined that everything this enemy takes from us they will pay back with joy when she is healed.

I am planning a party. When she is healed we are throwing the biggest party we have ever had. All the relatives that she should have known are required to be there. All the presents and games she should have enjoyed, she will enjoy. She will meet friends. We may even take a week or 2 off work to travel and show her all of the things she should have seen in the world already. This will be a celebration equal to all of the celebrations this has taken from us and then some. Put that in your pipe and smoke it stupid autism!

I believe that my child will be healed by next Christmas. Yes this is an extremely bold statement and I am gathering up all the moxie and determination I have to put that in writing. It seems logical to me. By this time she will have about 30 more rounds of chelation under her belt. I believe that should be enough to remove the mercury and her mind will be clear. I am not saying that she will be just like every other child by this time, it is more like an accident victim who comes out of a coma. I believe she will have woken up. She will still have some recovery and rehabilitation to go through.

So I have given you something to watch, something tangible. Succeed or fail.

The snow was already coming down and the roads were covered. While I clung to the dashboard, my husband and kids had a great time with the car sliding around the roads. When we got to the restaurant, the place was empty, maybe 3 other people besides the employees. It was heaven. Sophie was able to climb around without the fear of being knocked over by herds of stampeding children. It was so quiet that she wasn’t freaking out because of all of the loud sounds like usual. No one was looking at us trying to figure her out. It was a stress free night!

Sophie spent the first 20 minutes or so laying on her favorite “slide”, I got to play skee ball on the “slide” next to her. Then we just walked around from game to game exploring. She has always liked to sit in the cars, but her dad got her to ride the horse. She fell in love and rode it over and over, even petting it. One of her sisters dragged her into the tube, she also dragged her all around the tube until they finally found the slide to get down. It wasn’t one of Sophie’s favorites, but I had always wanted to see her up there.

We made it home after more donuts parking lot and sliding all over. We got 14 inches of snow that night and now the kids all have colds. We wont be leaving the house for a while.

I am so glad for that especially fun night out. I only wish I had brought a camera.

If you are reading this and you have a special needs child, these are things you already know, but for the rest of the world, special doesn’t begin to describe my child.

The love that my child inspires is remarkable. She is delicate and vunerable and there is a purity to her that I have only seen in a new born. It is truly like have babyhood extended way beyond it’s time. The only thing that doesn’t match is her growing body.

Not many people take the time to know her. She isn’t loud and definitely doesn’t demand attention. Yes sometimes she yells or screams in restaurants or grocery stores, but that is her sickness that always screams for attention. The quiet little girl  inside is only coaxed out in peaceful times. She sneaks out when her sickness is sleeping. She is only visible if you really look for her. She is a hidden treasure, and like most hidden treasures when you finally get a glimpse of her she is more beautiful then you could have ever imagined.

She has stretched me into a better person. She expanded my heart to hold this massive love she inspires.

My patience has stretched while I learn to care for her and wait for God’s healing.

My empathy has stretch as I meet the eyes of the other parents I see walking down the isles of grocery stores with their hidden treasures, it is amazing how I never really saw them before.

She has stretched my self discipline as I continue wake in the night to calms her cries or give her medicine, as I still change diapers at 5 years old, as I spend hours trying just to figure out what is wrong or what she wants.

She has stretched my vision of what a mom can be as I strive to mimic new role models, mothers who don’t worry do much about there housework or teaching their kids to read at 3 or 4, but who struggle through a marathon fight and never give up hope.

I am blessed by the sweetness of God’s gift of Sophie every day, and I feel honored that God entrusted her to me.

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?

She has not completely reverted to how she was before we began all of this. I see some improvement, she is not sitting on the floor lining up toys all day, but I see a lack of ability to communicate and less eye contact.

I have found some benefits. She has started to try new foods. She had cut her diet down to just a couple of things that she would eat. Her diet hasn’t been good, too much food that lacks much nutritional value, but a bonus, these things taste good. Trying new foods and having them please the pallet has caused her to experiment more! This opens up a whole new world! I am letting her try pretty much anything she wants, with enzymes, and I am adding good foods that are on the diet that taste good too. My goal is to expand her diet then start to cut out the non gf/cf foods again.

So there is some success to her leaving the diet with enzymes. In the long run, by expanding the foods she eats, the diet will be easier and mommy has a well needed rest for gf/cf cooking.