Note to Self

The achievement of anything that you desire must be considered success, whether it is a trophy or money or relationships, or things. But if you will let your standard of success be your achievement of joy—everything else will fall easily into place. For in the finding of joy, you are finding vibrational alignment with the resources of the Universe.

*my emphasis

Excerpted from a workshop in “The Law of Attraction, The Basics of the Teachings of Abraham” on Saturday, July 1st, 2006

Potholes

So, we are in the new library. I am checking out a book when Liberty begins to giggle. The giggle turns into a belly laugh and he is just so tickled about something he can't stop. A couple of nice people that work at the library smile and ask me if someone is in a good mood today. Kindness - I need that. The other older lady looks at Liberty sternly and says, "Sshhh...you need to settle down now. Be quiet." He laughs harder. She seems very irritated as I tell Liberty to be quiet. Yeah, sure mom. She makes a remark about him probably having way too much sugar today. I look at her and say, "He doesn't eat sugar." She says, "Oh, well...." She continues to almost reprimand Liberty, and I say, "My son has autism. He probably does not understand a word you are saying." That shuts her up. All she can say is, "Oh, I'm sorry." But, it is that PITY that gets me, and that urge to hustle us out of the sacred library, where, I might add, there is NO ONE because they are getting ready to close. Why not just let him be, for God's sake?

I am tempted to launch into the mechanics of autism, the gut-brain connection, the yeast...nah, it would be lost on her. Why should I have to explain anyway? Why? I usually don't tell people Liberty has autism until something like this happens or someone persistently tries to get him to answer them.

Mrs. StraightLace represents the general public, I'm afraid. She sees just another child with no manners, another one who does not fit in. Liberty looks "normal" and is so tall for a five year old people do expect more of him. But, try to talk to him and he breaks out into a 2-year-old's gibberish, at which people look at him strangely and back away. They back away from my good-looking little boy who was born perfect and who became brain damaged by a vaccine and my heart breaks over and over again. I am reminded of the nightmare I live everyday and I still can't believe it happened to us. To our family. To our precious child.

A good day has now turned into a bad one. I feel how much we are strangers in our world. We don't fit. He doesn't fit. All of the fears rise up like demons, all of that gunk you think you've risen above and moved on from. I'm in tears as I leave the library for home.

When is a giggle just a giggle and not yeast-related for God's sake? I forget what a normal 5-year-old boy does besides talk. I am not sure what he understands anymore. I am not sure of anything. When I do try to talk to him, all he does is fiddle with my seams obsessively and make noises. He still tries to drag me everywhere. So much for progress with signs. His school thinks he has made progress. Oh, please. I should have had someone in this house helping me every day. I should have gone the ABA way two years ago. Should have been more aggressive.

Coulda, shoulda, woulda. Again.

I am suddenly reminded of how mentally and physically exhausted I am. Maybe that is why I spend time in nostalgia. Maybe it's not related to midlife, but instead just a remembrance of a life gone by. I remember what life was like before all of this; what I was like.

This morning, I was cooking a favorite old recipe of chili beans that my mother used to make for us, that happens to be one of Liberty's staples. I was cooking it ahead to freeze like I always do for some of his meals. The smell of it cooking reminded me of a time when Lib was just a baby. It was autumn and we lived in the old fifties style house with the giant kitchen and the playroom that adjoined it where I could keep my eye on him as I cooked. Such a sweet time. The time before all of the trouble started. He was just my little son and we had wonderful days together then, back when he still nursed and took naps and ate everything that I cooked for supper. It was such a short time as we got the diagnosis at 20 months of age. That memory is now brown around the edges. Everything is in sepia tones. Precious days, gone now.

I will never forget the day that baby was labeled "disabled" by the government. Life became surreal then.

I saw another mom in the library on her way out that I used to know. She, with her two adorable normal children. Me, with my adorable but strangely behaving child. I avoided her like the plague. She would not have recognized me. When she knew me, I was about the size of a toothpick, wearing fashionable clothing. Now, with the extra 30 lbs, the extra wrinkles, the sloppy clothes...I'm sure she would not have even known me now. It would have been too painful to see the shock in her eyes. I'm just a tired mom of an autistic child who can't seem to quite put herself back together again. I think the only ones who really get that are other moms just like me. For those of you reading this, my hat's off to you, too. It's a tough road, but we keep on going for our kids.

I apologize for this being so depressing, but at the same time I'm not deleting it. I allow myself some wallowing time. Because this is the reality of it. It's great to see people who are "fighters" and doing all this stuff for their kids and I appreciate that. I have my own techniques for staying above the pain. But, I also appreciate it when someone .... one of US ... tells it like it really is. I need to acknowledge this part of the trip, too. I have to acknowledge it, so I can feel it and then let it go.

Oh well, it's just another pothole in the road. I will climb out of it. I will spend time finding thoughts that feel better and better to me until I find relief, and once again, I will be back in the driver's seat, talking to other moms, recording what I see each day, giving supplements, trying to help my child function in this world the best that he can. Being hopeful. Having faith. I will look through the lenses of what my child IS doing rather than what he is not doing, I will somehow put it all in perspective again.

But tonight, I'm hanging it all up like a tired, ratty old bathrobe. I will be reading a book, or doing a puzzle and placing my attention on anything...anything other than autism.

We must get rid of these combination vaccinations!

Kids vaccine linked to fever, seizures By MIKE STOBBE,AP Medical Writer Wed Feb 27, 8:28 PM ETATLANTA -

Children suffered higher rates of fever-related convulsions when they got a Merck & Co.combination vaccine instead of two separate shots, according to a new study presented Wednesday. The results prompted a federal advisory panel on vaccines to water down their preference for the combovaccine ProQuad, which protects against measles, mumps and rubella as well as chickenpox.In the study of children ages 12 months through 23 months, the rate of seizures was twice as high in toddlers who got ProQuad, compared with those who got one shot for chickenpox and one for the three other diseases. The risk translates to about one extra case of convulsion for every 2,000 doses of ProQuad given said Dr. Nicola Klein, who lead the federally funded study. She presented the data at a meeting of the AdvisoryCommittee on Immunization Practices. The study focused on children who develop fevers and then go into convulsions — an occurrence that frightens parents but usually has no lingering consequences. There were no deaths in the new study.

ProQuad was licensed in 2005. It's been in extremely short supply since last year, when Merck suspended production because of manufacturing problems. The company expects to resume ProQuad production next year. The panel had previously taken a position that they preferred doctors give children as few needlesticks as possible, and that ProQuad is preferable to giving separate shots. It voted Wednesday to amend that, to say they're no longer voicing a preference for ProQuad over the separate shots. "Safety, shortages, delivery issues — lots of reasons not to state such a strong preference," said member panel Patsy Stinchfield, an infectious disease expert at Children's Hospitals and Clinics of Minnesota. Merck officials said their own research, though preliminary, also showed a doubling of the risk in children within five to 12 days of vaccination. However, the occurrence was low — about 5 cases in 10,000, Merck officials said. They said there was five times more chickenpox antigen, the key ingredient, in the ProQuad shot than in the stand-alone chickenpox shot. But they said it's not clear that would explain the difference in seizure rates. For some reason, the difference disappears when comparing rates for 30 days, Merck officials added. Klein's research checked seizure rates only at seven to 10 days after vaccination, and looked at about 43,000 kids who got ProQuad and 315,000 who got the two other shots together. It found fever-related seizures occurred at a rate of 9 per 10,000 children vaccinated with ProQuad, compared with 4 per 10,000 for those who got separate shots.

Klein is co-director of Kaiser Permanente Vaccine Study Center in Oakland, Calif., one of seven sites in the study. Her work was funded by the U.S. Centers for Disease Control and Prevention. ProQuad costs $124 per dose, about the same as the two other shots combined.

Curiouser and Curiouser

When you are treating a child biomedically, and at the same time trying other modalities such at therapeutic listening and trying to distinguish what is working and what is not,( i.e. where in the heck the strange behaviors are coming from) you begin to feel like you're talking to these guys all of the time. If THIS is the advising committee in my head, I'm in trouble. I'm afraid this is exactly what it feels like, folks. That's me at the head of the table, by the way. The one filtering and sorting through all of the various opinions of the voices in my head. Can you see the concentration on my face, thinking, "What the heck IS this..."

A Mad Tea Party, indeed. Time to wake up the doormouse and have him tell us a story.

I had posted before about testing Liberty for PANDAS which involves basically having Strep titers drawn. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. Geez Louise. That's enough to scare anybody. Apparently, some kids get some odd symptoms right after a Strep infection. They develop things like tics and obsessive behavior, apparently from elevated Strep antibodies.

On our last appointment, I mentioned to Dr. Bock that Liberty had developed what I felt was an obsession with the seams in his shirts, and the seams in anyone else's clothing. He also had a high pitched barky sound he began to make on occasion, and then recently he began covering his ears (at no sound detectable), extreme sensitivity to light and some new eye blinking which could be seen as a tic. Also, I have posted before about Lib (and me) not sleeping through the night. If you go to the website on PANDAS you will find many of these behaviors including "sleep disturbance" could fit this syndrome.

Oh yes, but today I am reminded once again, that things are not always what they seem!

First of all, after finally getting a hold of a human being at the doctor's office and wrangling with the lab here to fax the results again, I got an answer on the PANDAS - the second part of the test we were waiting for called the "DNASE" was negative!

Meanwhile, Liberty has been in a Therapeutic Listening program since last March. There are a few different kinds of programs out there, this one is through a company called Vital Links. Basically, it involves putting on a special pair of headphones and listening to CDs tailored to the child's needs and all of this being overseen by an occupational therapist. In this particular program, Liberty listens to a CD for 2 weeks (twice a day for 30 mins) for 5-7 days, then switches to another CD for another 2 weeks, and alternates for a period of 12 weeks. Then we stop for two weeks and evaluate any progress or lack of it. The CDs they use in the program are incredible. I mean, who knew you could tailor sound for things like body coordination and social skills? Some of the CDs are Mozart, some are jazzy, some are nature sounds and they are all done in a special recording studio.

Anyway, Therapeutic Listening helps a child with auditory processing problems as well as visual processing problems and I always felt APD was a big factor with Liberty.

Having said all of that, I never dreamed that his symptoms were probably being produced by his Therapeutic Listening. When I saw him begin to cover his ears, I decided to stop the listening program for a little while until I figured out what was going on. Apparently, that was not the right thing to do. It did eventually occur to me that something could be going on with the Therapeutic Listening because the last time we took a break, he developed toe walking and spinning, but when he began again, the symptoms promptly went away and his therapists and teachers remarked on how well he was doing.

Now, I had put in a call to my OT but could never get her to return my call. So in the past two weeks of trying to phone her and get her input, I was spinning in circles with the new possible PANDAS diagnosis, and also wondering if the Diflucan which we are still on might be causing something. Or, if perhaps there was something in his 10 supplements that was the culprit. So, I stopped those and began them over again slowly. Then I wondered if stopping those suddenly did something to mess him up. See where the mind goes? Round and round in a circle game.

When I finally got a hold of my OT, do you know what she said? She said she "spilled a Coke on my phone number" and forgot to call me. Now, she has our records on file. Do you think she might have looked up my phone number? Asked the secretary? We went to see her in the office almost every day last summer. I was left speechless. I cannot imagine saying that to anyone!

When I described to her what was happening to Liberty, including the fiddling with his seams, she casually said, "Oh yes, that is quite common. Remember me telling you about the tactile problems that can develop?" No, I really did not log that into my memory if she did tell me. She said that, many times these symptoms mean that what we are doing is working. She said that he is being bombarded with sensory stimulation. She said that a newborn baby hears sounds all at once and has to learn to differentiate his mother's voice and other sounds that are important and let the others fade to the background. She said Lib is covering his ears because he has this new sensitivity because he is probably processing like he has not done before. The air conditioning that I tune out could be suddenly deafening to him, according to her. She told me to try lowering my voice, changing the bass and treble on the tv, etc. She is great at explaining it all to me but getting in touch with her, for some reason, is difficult. There is only one other person in town qualified to administer the program and she has a waiting list three miles long.

Then I thought, perhaps his CDs helped his body awareness and that is why he suddenly is potty training. His therapists thinks so. Oh did I not shout that one out? LIB IS POTTY TRAINING HIMSELF! One day, he used the potty at school repeatedly and then he did at home. I had him in underwear all weekend, traveling here and there in the car, with only one or two accidents at home. It really is phenomenal. I have to look back in my notes...was it only one week or so ago? Now, he is doing this like he's done it forever.

But, wait, how much of these symptoms and/or progress can be attributed to the antifungal, Diflucan - look at what phenomenal success Jenny McCarthy had with her son and getting rid of yeast. Look at the unbelievable yeast die-off Liberty went through.

Also, there is the MB-12 shots we restarted at the correct dose.

Can anyone really know how it's all playing out?

This is tough work. I feel like a detective and I truly understand now why the logo for autism is a puzzle piece. What is so exhausting about it is, you have to really scrutinize and take notes. When the doctor asks you if you see a correlation between sleeping through the night and the antibiotics his pediatrician just put him on for a blossoming ear infection, you have to be able to say yes or no. I mean, I have pretty great intuition, but not when I'm exhausted. Notes help.

I also now have developed very painful TMJ. Not suprising. A little stored anger and tension.

This afternoon, I spoke with the nurse today from Dr. Bock's office. She told me that oftentimes, covering the ears and being suddenly sensitive to light and sound, etc. can mean that detoxification from metals is happening. Again, one more possibility thrown into the ring.

So, it could be ANYTHING.

Perhaps I need to get a psychic involved in the works, add her to the TEAM of Super Sleuths.

No, wait, they are more expensive than the DAN! doctors.

Hey y'all, Wanna Rally?

Well, Jenny McCarthy is organizing a rally in front of the CDC in June!! Here is the link to sign up to participate. Atlanta is only about 5 hours from us, but don't know if we can make it. This would be one of those chances of a lifetime to at least feel like your voice was heard, like you said your piece, and to participate with many like-minded others, parents and other affected family members, friends, and researchers. I think we will give it our best shot to go, after all Jenny is begging for a turnout and she deserves it. WE DESERVE IT.

http://www.talkaboutcuringautism.org/jenny/cdc-rally/index.htm

On another note (only remotely related by Jim Carey, Jenny's partner) the author of the book A New Earth will be on Oprah next week, and Jim and Jenny are going to be on today to talk about the new world that is now coming into being. If you have not read any of Tolle's books, do yourself a favor:

http://www.eckharttolle.com/

Oprah is actually teaching an online class you can sign up for with Tolle in March. Details here

http://www2.oprah.com/index.jhtml

These are just two of the many events happening today that are pointing indeed to some new, exciting, healthy changes, expansion in consciousness, (let's hope), and the birth of a whole new kind of world.

What It Could Be Like to Have Autism

This was sent to me by a new friend I met through my blog. The website credit is below. I thought it was particularly beautiful and insightful.

An essay written by a 16 year old with Autism (the exact transcription)

What I hear is quiet, and relaxing. The warmth of the surroundings is welcoming. The farm is like a little peace of heaven. When I am on the farm I can be me. I can run fast, far, and free. I can climb like a monkey and fish like a man. No one has to know how different I am. On the farm you can be anything.

I sleep in bed with the moonlight shining in. It is golden and bright. It brings with it the protection of a worn, well tattered, well loved old, faded blanket. It shines like a light that is coming to carry me away. It hits the side of the red brick house with purpose and furasity. Moonlight is welcome to visit me anytime. The warmth it brings makes me feel protected and normal. The beams come visit me just like anyone else. I can pretend to be just another kid who sees the same moon, only with autistic eyes.

I love the water. Any kind, even the murky, dirty, grotesque slimy water of the creek. The creek exists on its own and accepts the fact that its beauty lies within it, unseen by the eye of men. I can associate with this. My inside is deep, dark and murky. I share secrets with the water. I feel accepted by the creek for the creature that I am. No judgement does take place between us.

Stillness and peacefulness surround me. Old, worn, well traveled brick streets that have seen a lot welcome me to the weekend getaway. They have seen much before me, and will see much after me. As I walk streets, I hold dear the knowledge that I am just a heavy weight traveling to and from. My destination and purpose matter not. I am just passing threw like socks on their way to the washing machine. Each sock is washed the same whether on the right foot or the left.

Wild and free, overgrown and untamed, the soft green field is alive. It does as it wishes, it does not meet expectations placed on it. I am nothing that the field is and it is everything that I want to be. I don't, I can't, I won't. I can only pretend to be the delightful and mindful Joey.

Yes, I am different. I struggle to be me, the average american teen. I am not, have not, and will never be, such a form filled, cutout mold filling teen. This is not to say that I do not want to fit in. I do, I just have to pretend. My isolated world is terrifying. When I am on the farm, I escape the reality of my world and blend into the big picture, invisible, and for a short while incognito. I can be whomever, Tom, Dick, or Harry. The farm offers without judgement a place to escape to a world I desperately want to belong to.

http://www.webpediatrics.com/autism.html

Carly Fleischman

In case you missed ABC news tonight, Carly is a teenaged girl with autism who suddenly began speaking via her computer. This really blows me away. You can go to the site and see how many people asked her questions. We are so desperate to know what life is like for a person with autism. I wonder what my son understands. It is so frustrating not knowing.
http://abcnews.go.com/Video/playerIndex?id=4312070

The Human Camera

This story was on Good Morning America about Stephen Wiltshire. I do not know the details of his autism, but his drawing ability is incredible. He draws in detail from memory. Watch as he draws buildings from Rome after flying over the city.

http://www.youtube.com/watch?v=dAfaM_CBvP8&feature=related

The Land of Noddin' Off

Ah, sleep! That necessary part of life. The thing that keeps your hormones balanced and what my beloved Dr. Oz says is one of the secrets to aging well. I am afraid to take his "What's Your Real Age?" test. I think it might show that I have aged 10 years in the last few months.

I have not gotten a full night's sleep in over two weeks. The crows feet around my eyes are beginning to resemble tire tracks.

Little Lib is either going through some kind of stage, or we are getting more serious side-effects to his antifungal. We are past the die-off, which I feel is some measure of success, but other behaviors are worrisome, such as the sudden sensitivity to sound (microwave oven, cell phone ringing, etc.) and also sensitivity to light. How about going to bed at 8 and popping back up and down from 12 to 4? This includes going around the house and flushing all of the toilets when he wakes up (but then he runs from the sound).

Also, now instead of just the seams of his shirts and pants bothering him, he has taken to ripping all of his clothes off in bed, and unless I check him constantly which is something I am not up for doing at the wee small hours of the morning. He will wet the bed as well, then I am up either changing the bed or throwing a towel over the wet spot if I have run out of linens at around 3 AM and stumbling back to sleep only to discover a spilled sippy cup in the bed. I tried giving him 3 mg of melatonin and it had the opposite effect - he buzzed around the house like a firefly.

I have been on my last dangling nerve for some time now and that one is fraying around the edges.

I do spy some hope as of yesterday, however. (And, yes of course I have calls into his doctor at Rhinebeck - I always have calls into Rhinebeck!) Liberty came down with a cold which made him want to sleep, and I think we might have finally straightened out his sleep cycle. He was only up once briefly and he slept through the night until 7 AM. I am sure you all heard the angels singing - it was a beautiful hallelujah chorus.

And, I have discovered the beauty and power of naps. Yes, naps! Glorious little cat naps that recharge my battery. When Liberty took a nap in the past three days, I took one, even if it was only for an hour, and I found that I had so much more energy for the rest of the day and was much less irritable (I am sure to the delight of all within my energy field). I have a lot to do during each day and have been frequently overwhelmed by trying to come up with schedules for myself, to no avail. But, ironically, taking time out to recharge ME has given me more energy and therefore seemingly more time to do things that I need to do. Working at night used to be hard. I would want to go to bed when Liberty did, I was just so worn out. Now, I am much more efficient and can get a lot done at night before I go to bed without being so ragged out that I just fall into bed at midnight.

And, something came into alignment today, like a vertebrae sliding easily back into its spinal groove. Today, I really had a new start. I got Liberty to school on time. I went out and walked a mile and a half in 25 minutes. I came home and worked out and cranked the music up loud. I forgot how powerful music is to change your mood and to motivate. I, of all people, should know this. I danced for years when I was younger (no not in a bar), ballet, tap, and jazz, and was a certified dance exercise instructor later in life. Dancing and music are what make me sublimely happy. Now, if you could be a fly on the wall in my house in the morning, you would probably burst out laughing at the site of an out of shape 48-year-old woman lifting weights to David Bowie's Rebel Rebel. It's probably not pretty, but I don't care. I had FUN this morning. I even got into some really old music of "my era" - God how that ages me - like Michael McDonald's "What a Fool Believes" and "How Long" by Ace or "Crazy Love" by Poco...yep, the 70s. I'm sorry, but there has been some clerical mistake on my drivers license because I know I am still in my twenties. At least that is how it feels (to my mind, not my creaky body).

Maybe that is how it always feels. Things that happened in the 70s and 80s seemed like yesterday to me. But I digress...

Since walking and working out, I have done yoga, written this blog, made fake Ritz crackers for Liberty (I'll get back to you on those), and am gearing up for another blissful little nap interlude where I shall, "fall into the arms of Morpheus" as my wonderful father likes to say, for about an hour before my little darling gets off the bus. [Truly, I could do a whole blog piece on the sayings of my father and his contribution to my appreciation for so much in life - love ya Dad - he reads my blog].

I have to end this post by telling you about something funny Liberty did, because, in the midst of all of this awfully draining stuff, he does things that just crack me up.

By now you have read the post about the pretzels he loved that I had to take away because they contained yeast. Well, yesterday, I put his TV and DVD back in his room so he could watch his movies in his bed while he was sick. He was so delighted he clapped his hands and hugged me. I left him in his room watching Kipper the Dog, and went into my office to work. Then, I see something out of the corner of my eye...it's Liberty hoisting our giant garbage can which is one of those cylindrical things made by Umbro, down the hall. He carried that thing all the way to his bedroom and then made a gesture for his father to stick his hand in the garbage can. This is the last place he saw the pretzel bag, people. Apparently, he got it in his head, that those pretzels he loved would go great as a snack in the bedroom while watching TV.

Non-verbal gets pretty funny sometimes.

Catchin' Up

I had a phone appointment with Lib's doctor last week and went over all that has been happening with the antifungal, Diflucan. Dr. Bock wants Lib to stay on it as we have seen gains. He told me to cut back the dose if his reactions increase. He also told me to try giving it to him at different times during the day to see if we can get him to sleep. Last week, he only slept ONE NIGHT through the night, and then this weekend, he was up each night from 1:00 to 4:30 AM. Thankfully, last night he slept through the night and I had given him the Diflucan around 9 AM yesterday. So, I hope that the sleeping issue is now solved because I look and feel like road kill.

It's funny what the world looks like when you finally get a decent night's sleep. Liberty did not sleep for most of his life, so going backwards is hard. I don't know how I ever made it through all of those years of getting so little and constantly interrupted sleep.

Dr. Bock said he wants to make sure we get the yeast issue solved so we can get to the Valtrex which is to take down inflammation in his body. This is the whole point of doing the antifungal. Valtrex will make yeast go crazy. It's a funny thing, I never would have pegged Liberty as having a yeast problem, but, I am a believer now.

There is an excellent article I received this morning through one of my Yahoo groups I belong to, written by Dr. Amy Yasko on the viral connection to autism. Turns out that Streptococcus can also be a culprit in creating leaky gut syndrome. I never knew that. You can read her paper here: http://f1.grp.yahoofs.com/v1/UAynRybbJZrQ9qxn5GSFjrrN9i9R1GbyK2VCaLzMrkwmY2EzJkPk9BFWomLw49DRxXksRt6VqHL5jMMpJIahs3r_pGOlUmm5ylUfeQ/Twisted%20Tale%20of%20Thimerosal%20and%20Virus%20Paper.pdf

Speaking of Strep, I told Dr. Bock that Liberty had suddenly developed a perseverative behavior with seams in his shirts and seams in the clothing of others. I also asked him if the Diflucan increases urine output, because there were a few days that the teachers told me they went through a huge amount of diapers. He said there is a syndrome that can develop from the Streptococcal virus and he sent me a prescription for something called an ASO titer. You might have heard of something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) http://intramural.nimh.nih.gov/pdn/web.htm . Not only did Lib develop the obsession with the shirt seams, he also had increased daytime urination, a lot of blinking, and then the problem sleeping - all listed as symptoms of PANDAS. So, we have to get this test to see if he had a strep infection that went untreated in the past few months. If not, I guess we can attribute the symptoms to the Diflucan.

If anyone knows anything about this whole PANDAS syndrome, please let me know. I do remember sometime in November, having a feeling that swept across my consciousness ever so briefly, that I should have had a Strep test done at the doctor's office. I think Lib might have had a cough or a cold or something. I was so proud that he has not needed a doctor since July, that it never crossed my mind to get his throat checked out, and no one at the school had Strep, to my knowledge. Last year, his teacher would tell me whenever another child in the class came down with it, so I would be sure and ask for a Strep test at the doctor's office. This PANDAS thing has me a little nervous. We don't need any NEW symptoms, for God's sake.

In the midst of all of this chaos with the Diflucan, Liberty is doing some really great things such as picking up new signs at lightning speed and signing spontaneously, giving the best eye contact ever, increasingly differentiated sounds and vocalizations, riding a bike on his own for the first time, stacking Leggos for the first time, using the potty and flushign the toilet, feeding himself with a spoon, and eating new foods. This is absolutely huge progress in a very short amount of time.

So, because of this, I did not put up a fight to stop the Diflucan, and I trust Dr. Bock to know what he is doing. I think we had the trouble we had at first because we started him off at 1 teaspoon a day right out of the gate instead of starting with 1/4 teaspoon and gradually building up. The other error I made was giving him the charcoal which really constipated him. My advice to anyone who is starting the antifungal treatment is to start out slowly and to ONLY give the charcoal if the symptoms are really bad, and then just a little bit mixed in with some unsweetened applesauce. It only takes a little bit for a small child and not two to three capsules like I had given him. Poor kid! And, to also keep the child's bowels moving every single day without fail because the dying yeast give off toxins and they need to get out of the body as soon as possible.

ANYHOO, here is some advice I could entitle, "Don't Let This Happen To You." When you go on this antifungal thing, it is important to not give your child YEAST! ha ha. Now, anyone could figure this out, but I was SO intent on finding new foods and textures for Lib to eat, that I continued to try to give him some gf/cf pretzels. Pretzels - think, "baked goods." On the label, "yeast" was listed last in very teen tiny writing. Well, what do you think happened? My son LOVED THE PRETZELS. The teachers were so proud. My husband even invented a sign for them which my son readily picked up. The thing is, he became rather obsessed with the pretzels which should have been my first clue. What can I say, when you are sleep deprived, you miss things.

So, when it finally dawned on me what was happening (and his symptoms were really pronounced on the Diflucan as you might imagine), I got a call from Lib's teacher at almost that very instant when the lightbulb in my head went off, who had called to tell me that they just discovered that the sign my husband came up with meant "vagina" in American Sign Language and they wanted to know if they should continue...so that was the end of the pretzels and thankfully the end of that sign. It's a diamond shape if you're wondering, let's don't go there.

So, Liberty looks in the garbage can every day now, the last place where he saw the pretzel bag.

Poor love. We replaced the pretzels with something called "Pirates Booty" which is puffed rice and corn rolled in spinach and broccoli powder, which I thought were totally nasty but Liberty actually ate them.

The other thing I have done is to go almost completely sugar free. I have begun using Xylitol in all of our recipes and I really like it a lot. I became enamoured with the stuff when I found out all its benefits. Turns out it is an antibacterial and can prevent tooth and gum decay. It also purportedly balances hormones and blood sugar. I'm trying it myself, taking a teaspoon a day.

Meanwhile, Lib's eating his graham crackers as a snack, and of course they are not as good without the brown sugar, but the xylitol still makes them sweet and the main thing is that Lib eats them!

So, all in all, I guess you could say I've been successful finally with the antifungal and with a diet that will support the destruction of yeast: Gluten free, casein free, yeast free, and sugar free. Not an easy task by any means, but we're doing it and surviving.

Are there any awards given out for this? I think we should have badges we can collect and display, like when I was a Girl Scout and got a badge for "Hospitality" or "Fire Safety" or whatever. Can we have some for Antifungals? Metals? Gluten/casein-free diet?

Don't cha think we deserve some kind of recognition for this hard work??!!

Mardi Gras til you drop

And you thought New Orleans had this whole Mardi Gras thing sewed up? Our town has a parade at night, seen here, one today, and one tomorrow at the beach. Next week, it's cajun music, red beans and rice under a tent in the beach parking lot. Before this, there have been dances and formal balls throughout the entire month of January. I mean, any excuse for a party around here, they grab it. I don't blame 'em.

My husband and I took little Lib to the parade downtown today. Just about all of the floats were pirate ships complete with shooting cannons and rock n roll music; and at either end of the boat were large jugs full of margaritas or beer. You gotta love a ship full of middle-aged women dressed in togas who call themselves the Krewe of Aphrodite or something like that. People go nuts for the beads and moon pies they throw. Even the cops and firemen were throwing them. We gathered quite a collection that Lib has been playing with all day. He had a ball riding on his dad's shoulders and digging the crowd. He especially liked the bubble machine and the baton twirlers. Right before it was over, he had had enough noise.

Funny kid. The cannon balls and noise of the crowd do not bother him, but a flushing toilet does.

Speaking of toilets...I am probably the only person I know who can get herself stuck in a port-o-potty. Something happened to the latch and I locked myself in. Talk about panic. Then, in trying to open the latch, I cut my fingers all up. I imagined having to call someone with a blowtorch to carve me out, making the front page of the newspaper, crowd gathered 'round.

I finally got out of that thing by the Grace of God. This phenomenon seems to run in my family - I believe it is caused by something called the "Lucy gene."

Never a dull moment in these parts.

More on the continuing saga of the anti-yeast affair later - one reason why I haven't posted much recently.

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.

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.

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.

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."

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.

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?

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.

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.

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...

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

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

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.

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.

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.

Happy New Year

It seems kind of strange to be venting in one post already today, and in the same breath wishing everyone a happy new year, but this is the way things go. You vent, you feel better, find a little gratitude and go on.

Today, the sun is shining and my son laid down for a nap. Did you hear the angels sing?

I am making my shrimp egg rolls for New Years, and probably taking down the Christmas ornaments and hanging out tonight on the couch with my husband...and probably Liberty, too, since somehow I have a feeling he will be up.

Oh well, this is where we are today. It's not glamorous or serene or easy, but it's still our life and we are grateful for it when we can stop and take a breath and remember how much worse it could be, and how really good we have it.

I look forward to new things in the new year, including a new president.

And I wish everybody a bright and shining New Year.

The Truth

When a child is screaming and has no speech to tell you what's wrong, it wears a person out. In fact, it's hard to always be the comforting, compassionate, grown-up in a situation like this. Do it for, oh ,say about five years. See what you look and feel like.

Parents come to me for help because they think I know something. I have a blog. I make good gf/cf graham crackers their children like. I have one of the best DAN! doctors in the world now. We've been down many roads. I have tons of URLs to send out. Most of the time, I appear to keep a positive attitude.

Someone made a remark that I was somehow an expert on autism. Nothing could be farther from the truth. I don't want that crown.

Hey people, I'm out here in the trenches with you. My son is better in many ways, but he is not recovered. I'm hoping for that. I'm working toward that always. But I have my hard times, my moments of doubt, my anger at God and the world and vaccines and...just all of it. The why, why, why that never will be answered. Sure, I know better. But when you're tired, you just feel like throwing in the towel. That's where the, "Surely, I didn't sign up for this" whine comes from.

You know, depriving a person of uninterrupted sleep is part of torture. Then, making them stay up all day and keep moving, always working, cleaning, preparing food, cleaning up food, changing diapers (how many years now?), etc. How can you expect to be okay?

I think I saw at the last DAN! conference a course for parents in how to take care of yourself. If I can just get my son back into school, I can go use the massage gift certificate I got for Christmas. I need a few of those per month. Fifty pounds and he still hangs on my neck and wants me to hold him. My body is sore.

I started taking some of the good supplements that Lib's doctor prescribed for him. I've got to get a grip on my health. I have an appointment in February to get the hormones checked and balanced. The thyroid and adrenal glands are just about shot out. I saw my homeopath last year who told me to get in balance before I slide into good old menopause.

I spend a great deal of time caring for my son, but also trying to manage all of these dark emotions. Dealing with a child with autism permeates every level of your life, marriage not withstanding.

You have to find ways to deal with it, manage it. I need a break. I don't have the money to pay anyone, though. I recall that I used to use exercise as a way to feel better and maintain my sanity. I stopped that this summer when the whole DAN! protocol got put into place. I was too tired to put on my shoes and walk. I think I will bundle Liberty up today and just get out and get some good endorphins going.

A blogger friend of mine wrote today about feeling hypocritical, posting about the positive and sometimes living the negative.

It's not hypocritical. We have our good moments and our bad ones. They can't be helped. Some days we are going to allow our well-being in, and other days will be far from it. We need to be able to reach out to people who understand. I've met many moms through this blog who have helped me, albeit across the miles, just to feel a little more connected, like I'm not in this alone. We post about what helps, we vent about our frustrations.

We hope that something positive will eventually come out of this hard situation in which we are living today.

Yes, my friend, in the end, gratitude for what we do have, for what IS going well in our lives, will eventually right our overturned boat and put us back in that stream. Sometimes we just have to wait until the dark shadow passes to get there. Sometimes we need our friends to keep it in perspective.

Thank You Donald Trump!

I thought it was worth posting the link to The Age of Autism for a few articles on Donald Trump's recent comments on autism and vaccinations, if you have not heard about this already.

Trump speaking out on vaccines will give the autism community a further boost, perhaps even help the push for insurance companies to cover treatment. I'm so grateful.

http://www.ageofautism.com/

The twilight zone of Christmas vacation

I have hardly had time to post anything since Christmas, I've been so exhausted.

After Liberty lost his tooth, I never thought to expect another tooth to be pushing its way in. Well, of course, that is what they do. I guess I thought I was done with teething. Liberty developed this strange high-pitched howl about a week or so ago and now I guess it was probably this tooth pushing through, although I don't remember having pain when my permanent teeth came in. That was a million years ago, so maybe I did, I don't know. My mom is not here to ask.

I have not had much sleep in the past few weeks. I finally realized it was probably his tooth that was causing his inability to sleep. I have also started his anti-fungal and he doesn't seem to be having much trouble stomach-wise, but who knows? He won't point to a body part. All I can do is ask "What's wrong?" over and over again to no avail, then he gets frustrated and the crying turns into a tantrum. Poor kid. He can't tell me what he needs. I wind up feeling completely helpless. And this is usually in the wee hours of the morning.

Another unusual behavior is for him to request a DVD to be played, sit and watch it once, then get to a part he doesn't like wherein he brings me the remote. I run it back for him but then he sits and cries. If I turn it off, that is worse. I have then committed the heinous crime. Then, he's just gone, screaming and crying and I'm at the end of my rope. About 20 minutes later, he's over it and onto the next thing.

He had a great Christmas and was very engagable. He has done pretend play with some of his toys. He acknowledged all of my family members, and he did seem to understand what we were saying. He enjoys having them all around.

BUT, two weeks is a long time to be off from school, that's all I'm saying. Seven more days and counting.

Last night I was up with him at 3:00 AM, then 5:00 AM, then 7:00 AM. I can barely get myself going and get things done around here, before he is pawing at the door to go. I have tried to find things for him to do, but we now have a week of continual rain and very cold weather coming our way. I can only afford to go to a bouncy place so much and play. At school, they really work the kids and when he comes home from school, he is asleep by 6 PM and sleeps through the night. This is what has really thrown me off. I want my good sleeping child back! I want MY sleep back.

And, you know how when you are tired, things don't look as good as they might be? I'm perceiving through tired eyes.

I wish I had more news to "report," or nice stories. We are back to just kind of hanging out and surviving until school starts again. I can say that Liberty is giving better eye contact and attending. This seems to be getting better with each day, and it seems his receptive language is increasing. One more week of the antifungal, then after liver function tests, we start the Valtrex.
So, I suppose we are moving forward, though I think I'm a couple of good night's sleep shy of seeing this clearly.