Wednesday, January 30, 2008

Eli Stone

Here is an article I thought worth sharing regarding the topic of the upcoming new show called Eli Stone that debuts tomorrow night. I read about the episode where Stone sues a vaccine manufacturer for causing a boy's autism, but I did not really know what the show Eli Stone is really all about.

Here it is:


Eli Stone: Autism and the Redemptive Powers of Faith
By Julie Deardorff of the Chicago Tribune. tinyurl.com/2zben7 Eli_2

Unlike officials at the American Academy of Pediatrics (AAP) and many pro-vaccination bloggers, I've had a chance to watch the entire pilot episode of ABC's legal comedy/drama "Eli Stone." The already controversial program, which debuts Thursday at 9 p.m. and subjects viewers to fanciful scenes involving pop singer George Michael, depicts a lawyer who argues in court that a mercury-based preservative in a flu vaccine made a child autistic. The AAP, after watching a seven-minute trailer of the show and reading media reports, was so outraged a sacred cow had been attacked that it demanded that ABC cancel the episode. Ironically, the move is drawing even more attention to the show. While the program includes statements that science has refuted any link between autism and vaccines, the AAP complained that "the episode's conclusion delivers a contrary impression; the jury awards the mother $5.2 million, leaving audiences with the destructive idea that vaccines do cause autism." I disagree. For starters, the AAP ought to give television viewers a little more credit. Will we really believe Eli Stone is a prophet who hears songs by George Michael, of all people, every time he has a vision? Moreover, the autism in the story line is almost incidental given all the other loopy things that are packed into the pilot. It's not about whether vaccines cause autism. What the episode's conclusion really asks is: Which is the greater force in life: science or faith? If the AAP had watched the whole program (or scanned the Web site), it might have seen that Eli Stone's brother, the doctor who diagnoses Eli's brain aneurysm represents science. Stone's acupuncturist friend, Dr. Chen, embodies faith. And as Dr. Chen tells Eli, "Everything has two explanations: scientific and divine. We choose which one to believe." This is how the autism-vaccine debate is playing out. Parents who are concerned about the safety of vaccines have already made up their minds. It won't matter how many studies show there is no link between vaccines and autism. We all believe our own truths. Vaccines can be life-saving, but like any medical procedure, they carry risks, even if autism is not "officially" one of them. It's up to every individual to get educated on vaccine safety and to consider benefits versus risks. I applaud ABC for trying to keep the conversation going once the television has been turned off. Eli Stone’s premiere episode airs Thursday night abc.go.com/fallpreview/elistone/index and there is nothing like a controversy to spark high ratings.

Think I'll tune in!

Oh - and hop on over to The Age of Autism (http://www.ageofautism.com/) for email addresses and phone numbers of ABC officials to help keep this show on the air, and for some more information on the controversy it has stirred up so far in the AAP, et al.

Friday, January 25, 2008

Potty Talk

My boy acutally used the potty and flushed the toilet. In fact, he liked flushing so much, I heard the toilet flushing from time to time as I was doing other things in the house. This, from a kid who used to run when he heard the noise.

Progress? Me thinks, yes!

Coincidentally, I was just getting ready to have a meeting on Monday with some teachers and a behavioral specialist to ask that they please back me up on potty training Lib at school (IOW putting him in underwear instead of pull-ups).

That's Lib. Just when I think he is so delayed with a certain behavior, he does it.

In his world, everything is right on time. Someday, I will GET that.

Thursday, January 24, 2008

Time Enough At Last



Remember this? In one of the best Twilight Zone episodes ever, Burgess Meredith plays a bank teller with a passion for books who cannot get enough time to read. He is down in the bank vault when a nuclear warhead hits and destroys everything. Long story short, he is alone with all of the books in the library scattered around him - time at last to read all he wants with no one to interfere - until he breaks his eyeglasses in true twilighty-zone irony.

Anyway, I remember this story every time I find a good new book to read. Reading is one of my tiny islands of pleasure; a mini-mental vacation. I rarely get the time to read, but now that the weather has turned cold and nasty, Liberty is back in school and I can sneak time in between working and household chores, I am once again back into my favorite pasttime.

I'm especially excited because Stephen King's new novel just hit the shelves called "Duma's Key," set in Florida, no less. I know, I know. Lots of people think that King is all blood, guts and aliens. He often includes that in his stories, and I was never a fan of his until I read his book, "On Writing," which are his thoughts on the craft with a brief memoir thrown in. I loved this book and I became fascinated by him and read, "The Stand," his 1200 page epic novel of what happens to our culture after a major flu virus hits and wipes out most of the population; "Bag of Bones," an incredible and scary love story, and then last year I read, "Lisey's Story." If you have not read Lisey's Story yet, you need to. It's an experience, as are all of King's novels. His writing is so good that you are able to really get into the psyches of his characters, you come to care so much about the people in his stories, you really don't care when he stretches the boundaries of sanity. In fact, you come to appreciate him for it. He makes you think about his books for a long time after reading them. I'm usually hooked by his first sentence.

My other favorite authors have not written anything in awhile. I hear that Pat Conroy has a 700 pager that is due to come out this year which I am awaiting with baited breath. After reading "Beach Music," I didnt think there was another novel as great...then I picked up "Prince of Tides." Dear God, the movie paled in comparison, in fact, it really just was NOT the book. He is probably my favorite author next to King.

Haven't heard anything from Anne Rivers Siddons since her last wonderful novel, "Sweetwater Creek." She's a great Southern writer - I learned so much about saltmarshes, tidal creeks, the old Gullah culture, and "pluff mud." Then there's Sue Monk Kidd who, after "The Secret Life of Bees," left me aching for another novel in that same type of genre as "Fried Green Tomatoes."

Rosemund Pilcher, a Scottish writer famous for novels such as "The Shell Seekers," and "Winter Solstice," a book I never wanted to end, another favorite of mine.

This summer, I read "Evening" by Susan Minot which was a good novel, but the movie was even better - still not a great movie - but with Meryl Streep and her daughter, Vanessa Redgrave and her daughter, Clare Danes, Toni Collette, the gorgeous Patrick Wilson, and Glenn Close, how could you not love it? Sometimes I will watch a movie over and over again just for the sheer mood it invokes. I think I did that with "Something's Gotta Give," a fabulous soundtrack, by the way.

Anyway, my ramblings for a cold, rainy morning. I'm going to my reading corner now. May you find a good book to lose yourself in this Winter.

See ya!

Moving On

Just an update on our situation with Liberty receiving the wrong strength of methyl-B12 shots. The pharmacist made the shots incorrectly because it was "too hard." Dr. Bock's nurse had no way of knowing they were wrong. I should have called up to the office and read the prescription to the nurse when we picked up the shots, but I had no reason to believe they were the wrong thing.

We are glad to have found out this problem and have moved on. We received our shots from Hopewell Pharmacy the other day and will be getting everything from them, including the antifungal which we have started again at a much lower dose. Hopewell sends out our stuff so fast, it's amazing, and you can reorder stuff on line. I am really pleased with them.

I have an appointment with Dr. Bock next week, and, as far as I am concerned, we are just moving forward.

Liberty is doing great so far on the reduced dose of antifungal. For some reason, his appetite increased and he ate four new foods this week. That is nothing short of phenomenal.

After a rocky start, I am looking forward to seeing how my son does on the proper methylB-12 shots. My husband and I remembered that, when Lib received his first shot of the proper dose of MB12 in Dr. Bock's office in NY this summer, he immediately started vocalizing more.

In the end, I think that the lesson is, go to a reputable pharmacy and, as far as the MB12 shots are concerned, they have to be made properly and often small compounding pharmacies just cannot do it. Cut your losses and go to the big, reputable guys, namely Hopewell Pharmacy, Lee Silsby, and the other one that Dr. Bock's office recommends, Fallon's.

'Nuff said.

Monday, January 21, 2008

The Guest House, (a poem by Rumi)

"This being human is a guest house.
Every morning a new arrival
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they're a crowd of sorrows
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond."

Friday, January 18, 2008

Getting my feathers straight

When I need to rest, I get on a boat and go to San Salvatore, my Italian castle, and swim in the Mediterranean Sea. I need this kind of time-out. I want to bask in the warm sun on a rock or in a fragrant field, until I hear the bell ringing calling me to lunch or dinner... 'time out o' mind.

This is my all-time favorite movie that puts me back where I need to be, each and every time, without fail - and the best commentary on the true nature of Love, I've ever seen.

Love.

Tuesday, January 15, 2008

The "wrong" methyl-B12 shots?

I am at this moment in time a very hurt and disillusioned mother.

Because of the astute persistence of a certain autism mom who kept telling me to check Neubrander's site (the neurologist who came up with the methyl-B12 protocol), to check my pharmacy, to check my shots to see if they were the strength they are supposed to be according to Neubrander, today,I find they are half strength. Half strength.

Half strength means, not the proper protocol - the wrong protocol. Six months, and no one would have even noticed in Dr. Bock's office that we were getting a sub-standard MB-12 shot.

I have to question Dr. Bock's practice now and that pains me a great deal. I especially question his nurse. Do you know what she said to me? "Oh, well, give him two shots a day." I told her that my son had just been through hell this past weekend with severe constipation caused by her mistake, and there was no way I was giving him two shots a day, and more importantly, THAT IS NOT THE PROTOCOL and Dr. Neubrander clearly states this on his website. It's just wrong, plain and simple, and she doesn't know this?

This morning, I checked with all of my autism mom friends and asked them to read me their prescription. Sure enough, theirs reads differently than mine. Theirs is right.

I have about had it. I called and left a message for the nurse who was responsible for calling in the initial prescription. I want answers. Did Dr. Bock write the prescription wrong? Did the pharmacist read the prescription wrong? What happened? The fact that I never would have known leaves me feeling very empty.

Even my homeopath I saw today in the health food store knows better; he was apalled.

My son is okay. He survived the overdose on charcoal. He was not harmed by the low amount of B-12. We will order the new shots at a higher price from the correct pharmacy. We eventually will talk to Dr. Bock, if he is ever available. I might have to wait until my appointment January 29, but you can bet I am faxing a letter tomorrow to be placed in the chart.

It's just that I have lost confidence in my DAN! doctor, the one thing in my life that I thought was going right, and now I don't know how to feel. I emailed another DAN! doctor six hours away from us in Florida. We heard her speak last year and she is great. She is Dr. Kartzinel's partner, so her practice is slammed, too, but the thing about her is she is accessible. She emails you back. She is very available to her patients and that is what we need. At least she was last time I checked which was back in September.

I respect Dr. Bock's knowledge and felt so privileged to get in with him. But, now, the bloom is off the rose, so to speak.

Perhaps he can redeem himself. I cannot take advice from his nurse anymore. She is just giving out information that is wrong. Dr. Bock has no other nurses. So, it's me and their voice mail. Me, my anger, and their voice mail.

Slowly, my glass of wine is taking the edge off of the anger, I am slowly releasing my resistance. What will be will be. If we need to switch doctors, we will. We will certainly get better shots, the right shots. It's just six months of my son's life, that's all. WTF?

Monday, January 14, 2008

Dreams

My friend Carrie has been posting a lot about her dreams. I admit that I dream a lot and I love my dreams, but this past year it seems I have been in a "dry spell." Or so I thought.

It wasn't until I had been woken up abruptly again and again by my son this past week that I realized I'm dreaming but not remembering. And the theme turns out to be the same. I'm always losing my son. I'm always suddenly wondering where he is. How could I have left him like that? It's not the panic dreams like I had when he was a baby, common to new mothers. You know the ones where you get in the car and realize you left your baby at home, or at the store, or in the park, etc. Those are just fear run-off dreams.

But I realized that in my waking life, I have often said that I had my son with me finally, when he was born, and then I lost him again when he disappeared into autism. I wanted him so badly. I had a devastating miscarriage before him and it was so hard for me to get myself in a place of trust and peace and courage to go forward again. It's kind of like I'm here all over again. Wow.

So, yes dreams do reflect reality in so many ways. I suppose I am always looking for him, even in my dreams. The last dream I had was that I was in an airport and Liberty was suddenly missing. Then I found out another mother who had a child with autism herself, found him. She was in a different state, though, and I had to call her on the phone. I remember being so relieved and grateful.

Perhaps this reflects the fact that the most useful help I have received regarding my son's health has been from other moms.

I am convinced all autism moms are blood relatives.

Love.

Giving it Time

Our doctor and his nurse are not in their offices today. I called and let another nurse know about the experience we had with the charcoal and the Diflucan. She seemed to be rather shocked by it, but anyway, for now, we are resting.

My little son spent the entire day yesterday resting, only to get up around 4:00 PM, eat a little food, prance and skip to some music I was playing, and then promptly put himself back to bed at 6:00 PM. Does this tell you anything about how tired and wasted his little body must feel? I just feel terrible about this - even though I was just following directions, what did I do to my boy? It think it could have turned out worse than it did and that scares me to death.

Where was my intuition? I asked the nurse on Wednesday if the charcoal was constipating and she told me no, and also told me that the charcoal can't hurt him. I now beg to differ. I am really curious to hear what Dr. Bock has to say.

Meanwhile, there is a big part of me that wants to just stop all of this. I feel like my son is a guinea pig in an experiment, and, of course, the reality is, he is. If I had had to take him to the emergency room here this weekend, the mainstream doctors would not have understood at all what we were trying to do.

My sister says it's like I'm trying to practice medicine without a license, in the sense that there is no one here to observe my son and guide the progress, oversee the protocol. All I have are anectodal stories and a loose guideline for what to do and what to expect. In the light of wanting to recover my son biomedically, all of that seemed okay, until I saw how badly my son was hurting. It reminds me of when I took him to get his shots, especially the MMR. I didn't know what I was doing on that fateful day and now I can't take it back. I remember the hesitation, how I drug my feet, not wanting to take him in. I just blindly pushed forward because my doctor told me to.

In this recent situation, I think that if I've learned anything, I have learned to start out giving gradual doses of medicine to Liberty to see how he reacts first. The doctor did not tell me to do this, but so many other moms who are trying the antifungals are telling me they started at a reduced dose. This stuff costs $86 a bottle and it only is good for two weeks.

The Universe is telling me to slow down and be careful and gentle. If I decide to start this up again, it will be in a dramatically different way, and I will insist upon it...or change to some other alternatives like olive leaf extract.

But for now, we rest.

Sunday, January 13, 2008

Learning From "Our" Mistakes

Okay. I've got it now.

The pain that Liberty was in yesterday, was not necessarily from a larger-than-normal amount of die-off; it was from killing yeast and then blocking the exit for the toxins to leave the body.

Yes, in a child with chronic constipation issues, anyway, why would you prescribe a strong anti-fungal and not a laxative, or suggestions for moving the child's bowels besides glycerin suppositories?

For the record, charcoal IS VERY constipating, at least in this child who suffered from it to begin with. It might be great at moving the toxins through the body faster and that is a blessing, but you have to get this stuff out as many times as possible. Most children will have diarrhea from the die-off and Liberty had some of that in previous days, but we were told to increase the charcoal and that was not a good suggestion.

I stopped the Diflucan yesterday. Did you hear the angels sing? Lib slept from 7 PM to 7 AM, and awoke feeling much better. Unfortunately, he still is passing the charcoal which was like concrete in his little body.

When I think of it, this situation could have turned into something really bad like a blockage and I would have had to take the child to the ER. Thankfully, that did not happen. I realize now that the two-hour writhing in pain was from his intestines hurting, God I hope we did not create pockets in his intestines. The last thing we need is to mess up his bowels, where I believe his issues started to begin with.

I want to thank my readers who emailed me about the issues with charcoal and ways to detox the body. I am very appreciative.

I hope that others can now learn from this mistake we made and be better prepared when deciding to try an antifungal. Even Stan Kurtz mentioned on his site that they put charcoal in applesauce and started the antifungal/antiviral gradually at a reduced dose. Now, this makes so much more sense, doesn't it?

Tomorrow I will call Dr. Bock's office and come up with a new strategy. One of my readers reminded me that recovery is not a sprint, it's a marathon, and there's no emergency, no rushing that we need to do. We just need to take it one step at a time in good faith.

Today, on this beautiful Sunday on the Gulf Coast, we are counting our blessings for the restorative sleep we got, and for the peace of mind that comes when we realize we don't have to keep pushing the river - we can step back and regroup.

I am sure the wonderful Dr. Bock will come up with a new plan for us.

Saturday, January 12, 2008

The Saga Continues...

Liberty's worse night ever. I say night but really it was morning.

I thought he would have had a better day, knowing what I know now about the charcoal not to be given until at least two hours after the Diflucan. And, Dr. Bock's nurse told me to give two to three capsules twice a day on an empty stomach. This takes some planning.

So, he had a great day at school as I did not give him the Diflucan in the morning. After he got off the bus at 2:30, I gave it to him. No problem. He ate. I waited for the food to digest. So, about 7 PM, I gave him the charcoal. He slept. I went to bed early, just in case we were up.

At 1:00 AM, he was up, raring to go. He ran around the house and turned on all of the lights, he giggled. I somehow got him back to bed.

At 3:00 AM, he was up again with high energy, but happy, seeming to be okay. Thought we were out of the woods. I gave him Motrin in case he had a headache or bodyache which is common with yeast die-off.

By 6:00 AM, he had been up playing since 3:00. Then the howling began. Then the screaming, the kicking, the throwing things, pushing me out of his room, slamming his door hard over and over again, I mean, just totally out of control and in pain. Two suppositories, nothing. I throw on clothes and get my husband to watch Liberty, mainly so that he does not hurt himself. He hurt his leg pretty badly the other day by kicking something and has a giant, bulging bruise.

This raging goes on for two hours.

I went to the store and got an enema, as much as I hate to post that, this is the reality. I come home to the continuing screaming, give him part of the enema. Nothing. About 20 minutes later, he finally moves his bowels. He gets better. Thank you God.

He is suddenly hungry and happy and bouncing around the house.

Then the howling and screaming again. I noticed that he ate my homemade gf/cf graham crakers now made with sucanat which has less sugar. I am thinking that this is exacerbating his symptoms.

I received a comment from an anonymous reader (bless you) that the charcoal is constipating. This, after the nurse said she had never heard of it being constipating. I told her I thought it was, too.

This morning, I call Dr. Compain, the on-call physician for Dr. Bock. He says that it is unusual to have a die-off this bad, this far into the game, and that he must have an incredible yeast overgrowth and my need to go on a special diet (I did not want to hear that.) He told me to reduce the dose and to give him prune juice and increase Vitamin C to help move his bowels and he, himself, said the charcoal IS constipating. Obviously, I need to clue the nurse in, right?

I am half-dead and about sick of trying to figure this out for myself. He said Dr. Bock might tell me not to give the Valtrex until we get a handle on the yeast because he said the Valtrex will "make the yeast go crazy." Oh my God, any crazier than now? It can be worse?

I have heard that stopping altogether can make it worse. Dr. Compain said we might have to be on this for a few months before the Valtrex.

I cannot take another morning like this one. I will be divorced, for certain. Ask me how hard this is on a marriage. My husband busts his butt at work, works all of the time because he has to since I cannot work as much and now Liberty's meds are costing more. I need emotional support when I'm going through this, though. I work too, at home. I run the household and take care of this child 24/7. We need to be in each other's corner. He is emotionally shot out and so am I. We are just at each other's throats. This does not help.

I looked back over my notes, and there have been nights where Lib slept. So, maybe we are getting through the worst of it. God, I hope so. It is 1,000 years until Monday when I call Dr. Bock's office and get a new plan.

Until then, I will cut the dose to 2/3, and go out and by plenty of prune juice today. Cut out the crackers or make them with Stevia. I tried them with stevia, and they were not that great, but will try again. The bean flour I use is high protein, so carb wise, it shouldn't be too bad, should it? Or cut them out all together and then wonder if he will go through withdrawal from that?

Folks, I am open to suggestions.

Keep us in your prayers.

I think I am deciding to stop the antifungal until Monday when I can talk to someone at the office with a clue. I cannot take another night like this, and if can't tolerate it, what must my poor child be going through?

It's 10 AM, Lib just fell asleep and I am on my way there...

Thursday, January 10, 2008

The Aim of the Anti-Viral

At the end of this post is a link to a video of Stan Kurtz's son Ethan. Ethan recovered from autism. Stan, his father, is not a doctor, but he discovered what worked for his son and also recovered himself from ADHD in the process. Pretty amazing stuff. He is well-respected in the autism community.

The brief video demonstrates the difference in Ethan pre- and post-antiviral.

I am encouraged today, as we are on day 15 of the anti-fungal. Last night between 12 and 3:30, Lib was up screaming and howling. I got him his charcoal and some Motrin. I rocked and rocked. Finally he slept and amazingly got up in time for school.

Liberty's liver function tests were okay, so now we get the Valtrex, the anti-viral filled. I must prepare myself for Phase II.

I might be chewing rawhide just to get me through Liberty's die-off reactions, but I have to try. If he could have anything as remarkable as Stan's son, it will be well worth it.

So far? Moments of incredible eye contact. An amazing day at school today since I did not send him with the antifungal first thing. He brought his bag of crackers to the teacher and said, "Cracker." On a computer reading game he scored something like 14 out of 17. What will he do with the anti-viral I wonder? I read it doesn't work for all kids on the spectrum.

As soon as he got off of the bus, I gave him the Diflucan, and even with the charcoal I gave him, within about an hour, he began a kicking, howling, screaming fit and threw things all across the room. He tried to kick a large painting off the wall. I gave him a suppository to move the yeast through, then put him in an Epsom salt bath. He got better.

This is die-off. This is some bad die-off. It's like helping an addict get clean. It's hell. I'm trying to stay strong for the well-being of the boy.

Anyway, here's the video. Pray for us. Film at 11 as they say. I will keep ya posted.

Postscript - The compounding pharmacist told me to give the charcoal 2 hours after the Diflucan. Now, that would have been useful information, say, about two weeks ago. So, that is another reason why Lib is having such trouble, the dose is being reduced by the charcoal.

You know I'm a nutcase at this point.

http://www.youtube.com/watch?v=aEw0Y5LJ6vg



Wednesday, January 9, 2008

Aah oatmeal!

Hey, check it out. Bob's Red Mill just came up with gluten-free steel cut oats and rolled oats! I thought this was noteworthy; something wonderful to add back into the gf/cf diet!

https://www.bobsredmill.com/GFOats.php

Tuesday, January 8, 2008

Same Yeast, Different Day

It's one thing to read all about various biomedical treatments and the experiences of other parent's children, and quite another to actually perform those treatments on your own child.

I thought I was thoroughly briefed and prepared for yeast die-off. I was not prepared to see the Sweetest Child on The Planet rehearse for Damien Returns.

Oh...My...God.

I had to go pick up Liberty for a fit the teacher finally realized was not "just a tantrum." I told her to watch out for something like this and be sure and call me, but she said she held out because she "didn't want to call me." I don't really understand that. She wrote on her note she sends home that he was like that for "40 minutes." Poor little kid.

He was quite lathered up when I got there. The assistant came out carrying a screaming, kicking thing wrapped in a blanket that I did not recognize as my son. I jumped out of my car, still in my work-out clothes in which I did not get to work out-in, wielding a syringe filled with black, powdery stuff and proceeded to insert it into my son's mouth. He screamed, he batted at me, he kicked when I put him in his car seat. I whisked him home. He got out of the car screaming, tripped and laid prone on our driveway sobbing. I'm sure every Gladys Cravits in the neighborhood was observing this unusual scene.

I finally managed to get him in the house and get him some Motrin. Within about 15 minutes, the Alien was gone and my son was sitting on his bed smiling and laughing. About 20 minutes after that, I was on the phone with my sister who was commiserating with me when suddenly I saw that Liberty was covered in...something that was GI Joe-colored green...running down his leg. I dropped the phone and rushed him into the bathroom.

Anyhoo, today anyway, the constipation was cured.

s'all I'm saying.

I dialed my doctor's office in NY and thankfully was able to speak to the nurse. She said it sounded like a pretty severe case of die-off, and that I had to keep giving him two to three capsules of charcoal every day on an empty stomach and to make sure he moves his bowels as much as he can.

I will have to try giving him the charcoal in the morning before he eats anything.

It's all so much work. Not having a way of communicating what he is feeling is the pitts and I know for him, bless his little heart, he is just frustrated beyond any of our imagining. He does not mean to hit or kick. He just feels lousy.

No one can tell me how long this will last. No one knows.

I ask that anyone who is reading along with me today, keep my sweet little son in your thoughts and prayers. Maybe throw me in there with him for good measure, will you? I need all of the good vibes I can get right now.

For all of the pain my son is going through, I do hope there will be a significant gain. If not, I guess we can say we tried. I will get liver function studies done tomorrow and that should be revealing and probably predict whether we go forward or not.

By the way, as I was searching for information on dealing with yeast die-off, I ran across something I have never heard of before. The article stated that people with heavy metal poisoning have a worse time with yeast die-off, and that the herb Cilantro detoxifies the body of mercury. Anyone ever heard of this? Here is a link to that interesting tidbit of information.

http://www.modernherbalist.com/cilantro.html

It seems an odd coincidence that just last night I was looking for my recipe for fajitas. I never noticed that it called for Cilantro (an herb I rarely use), and I turned to my husband and said, "What is Cilantro good for anyway?" I will certainly ask Dr. Bock about this.

Monday, January 7, 2008

Back in the Swing of Things

Wow, 2008. How old does that make you feel? Actually, I am excited about the new year. I have an upsurge of energy and have this feeling of major changes with the world and good things eventually to come.

Plus, I'm just glad Christmas is over. I am not a person who waits for Christmas all year. Usually, it catches us at a bad time; being both self-employed, work tends to fall off around that time and we have not been able to put money away like we say we will all year. The expense of Liberty's care has made sure of that, but at least we can say that Liberty is doing well and in a better place than he was the year before and that gives us a measure of satisfaction.

This being the first day back to school for little Lib, I cleaned the house instead of resting today. I had no idea just how much I had let fall by the wayside. How did we breathe in this dust? It was great to finally get the tree out of the living room. Finally, we have some more space. Perfect for doing yoga, which is in my plans - big time. I never felt better than when I was practicing. I have a class I am going to go to soon, but also am doing some yoga poses at home.

Two weeks of unstructured time is hard on Liberty. I was going to direct my energy toward potty training the week after Christmas, but we started the anti-fungal and all hell broke loose so that was out. I got a note from the teacher today saying that Liberty had a great day, hugged everyone and was in a great mood, but was not engagable as before and lost his signs he had mastered, and generally wandered away from where he was supposed to be and kept trying to take off his shirt. Well, somewhere around Thanksgiving, he developed a sensory issue with seams in his shirts and other's clothing, as well. I have no idea from whence this annoying habit came. God only knows. I can't go over all 13 supplements and pick out a culprit, if there is one.

I started to get that feeling like I am just useless at home, and it is my fault that he is not doing well in school, but then I remembered that usually when he has a break he regresses a little. His little body has been through an awful lot. And, just tonight, I finally got him to move his bowels - the kid was beyond constipated and that is bad when you are trying to get rid of yeast. I triumphed! I celebrate any and all little victories.

So, I told his teacher that he is probably just adjusting to the new routine and for the first time in all of these years, made a decision not to take on any guilt. A first for Kath! I'm just simply tired of it - I know that I personally have done my best and that is all I can do. If it falls short of the mark of what I should be doing, I am open to suggestion. Period.

I am thinking that beginning this weekend, we will have nothing but frozen dinners or take-out and I will dedicate myself 100% to potty training, using the timer.

The other great thing about school? He's in bed at 5:30 PM exhausted from the day's activities.

Off to cook our dinner and, you guessed it, open that bottle of wine.

Thursday, January 3, 2008

Yeast-Die Off

I started Liberty on the antifungal/antiviral regimen the day after Christmas. Thank God, I did. For the first day he was okay, then the screaming began. Charcoal tablets really do help. So does Motrin which I am not thrilled about giving him (dye-free, of course), but he also was cutting a tooth. A double whammy. He has been up quite a bit screaming, but then it really got better yesterday. Then, today, the worst screaming episode in his entire life, complete with throwing things, kicking and grabbing himself.

Ask me how old I look today. Old and tired.

Diflucan is what we are giving him first for two weeks. Then he gets liver function tests and if they are okay, we start the Valtrex, the anti-viral. I have not enquired as to the expense of the Valtrex. The Diflucan is $86 per bottle and I found out the bottle is only "stable" for 2 weeks. So, the compounding pharmacist here was so sweet, he took pity on me and invented a way to give me some powder to mix to get me through the month to make a second bottle. So, now it is only $80 per month instead of $172. This is a real sock to the gut right after Christmas. Not to mention my husband's truck acting up and in the shop. At the pharmacy, I actually cried out after I thanked the pharmacist profusely, "My God, I have 20 bucks left!" I was quite pitiful.

I wrote about this method called "carpet bombing" and referenced J.B. Handley's piece over at the Age of Autism: http://www.ageofautism.com/2007/11/is-autism-an-in.html#more.

This too shall pass, I keep saying to myself.

Today, Liberty had the worst screaming fits ever. He ate around six Ritz crackers that I had sitting on the counter in the kitchen. He never cared for these ever, but apparently, today, he wanted to sample them. About 20 minutes later, the screaming began. I really did not know what to make of it at first. Without going into too much gruesome detail, he was terribly constipated. I gave him a suppository and then had a phone call. Big mistake, people. That's all I'm saying. I just took a break from cleaning all of the rooms in the house and stacking the bedspreads and pillows, etc. in the washing machine that he touched with poopy hands to write this post.

Well, I started this blog to chronicle our biomed journey. I wish I could wax poetic, could write some "great" posts like so many of you folks who kindly read my blog. But, the sole purpose of this blog is really to keep as a diary and share our experience.

So, anybody else encountered yeast die-off with their antifungal? I am sure most people have, as it initially increases yeast in your gut before it leaves. But, I wonder to what varying degrees the symptoms of die-off are? Liberty went through something like this initially with the gf/cf diet and we thought it was yeast die-off. This is month eight on the diet (sans the Ritz crackers).
I am happy to report (and it is the only reason why I am not up on the ledge again) that I am seeing some incredible things with Lib. The eye contact is not just a little, he is fully present and initiating contact. He is pretend playing with his Little People and his cars and trucks and giraffe and things he did not care about that much before. He made me sit on the couch yesterday and got right up in my face and smiled, and touched my face and hair and smiled back at me when I smiled at him. He is trying very hard to talk. Very hard. It's painful because you're just rooting for him in your mind all of the time (come on, baby; come on baby...).

I hope and pray I'm doing the right thing. I have a feeling in my gut (bad pun) that I am. Time will tell, I guess. I have read a lot about yeast, how it can be not only in your gut, but in your nasal passages and in your brain. Reading about it is not quite the same as experiencing it and seeing symptoms that others have reported parade themselves right before your very eyes.

Ah well. Off to pour my glass of wine.