Further Along the Road

Lib and I are just recovering from a bout of bronchitis or I would have posted earlier about our meeting with our new doctor for the results of all of the lab tests. If you recall, we basically are starting all over again. Our new doctor is a neurologist and a DAN doctor. I was hoping by our second meeting I would still like him and guess what? I really do! He is a God-send to say the least.

He spent over an hour with me going over test results, handing me copies for me to keep, and only charged me for about a 20 minute visit. The old doctor in NY? Would have charged 4 times as much for 20 minutes and we'd still be in the same old place doing the same old thing.

First, the results of the stool tests showed that Lib has a Pseudomonas bacterial infection. He is on garlic extract for that. That stuff is powerful, if you've never tried it.

Second, he had absolutely no Lactobacillus, the good bacteria, growing in his gut. He had two strains of other non-pathogenic bacteria, but the lack of Lactobacillus blew my mind because I have been faithfully giving a probiotic twice a day that is loaded with Lactobacillus. I was stunned. How did this happen?

I showed NEW DOC the $50 bottle of NuFerm that our OLD DOC put us on that was supposed to be so fabulous. He looked at it and just said, "No." He prescribed a different probiotic twice a day on an empty stomach, added in a Saccharomyces boulardii, (actually a friendly non-pathogenic yeast) twice a day in non-chilled water, and added FOS powder, which basically is food for the good bacteria to make them stay in the gut. He prescribed Diflucan for 15 days at a much lower dose than the one that the former doc put us on last year when we went through so much hell with die-off. Do you remember Lib being on Diflucan for five months in preparation for a trial of Valtrex? Crazy. I see it all now as CRAZY.

Guess what? No OAT (organic acids test) was ever done. God, I'm learning the hard way at the expense of my precious child.

This yeast Lib has I am convinced got kicked up because the former doc did not bother to do labs before giving us a strong dose of DMSA chelation suppositories( I asked for half the dose, thank God) nor did he give us proper probiotics to help the good bugs stick around. He simply told me to double up on the probiotic. For this, we paid how much money for how long?? To say that I was put out about this is the understatement of the year. Here we are having to start all over again. That was too much money and too much hell to be put through to have to start all over again. I need to write a letter to him telling him exactly how I feel. By the way, I cancelled an appointment with OLD DOC because I could not afford $300 and it was after I saw the NEW DOC. Guess when the next appointment for Lib would have been? J U L Y. That's right. And this child, they knew, was undergoing chelation.

Lib also had very little enzymes in his gut to digest his food, so we added some new enzymes, a different brand that is targeted to exactly what Lib needs according to the labs and not just the standard Kirkman DDP-IV with Isogest. He was on that, although sporadically.

If the other doc in NY would have spent more time with me, maybe if I had had labs where I could actually see what was going on with my child and understood it better, I would have been more vigilant with enzymes with every meal. I also was never told the proper way to give the enzymes and probiotics (enzymes with every meal, probiotics in between meals with unchilled water - important). The doc in NY would prescribe something, jot it down, then hand me off to the nurse so quickly it would make your head spin, and suddenly, you're talking to the Nutrient Room where they are packing up a box to ship to you. The Nutrient Room? I remember them telling me to just take everything at once and dump it in some liquid to give to Lib. This is something you should never, ever do.

So much fell through the cracks in Lib's treatment. So many people who I thought were experts, were not.

So, NEW DOC said, the gut must be cleaned up, that it is the foundation of every other treatment we will ever do. Get the bowels moving to remove toxins. No hyperbaric chamber treatment and no chelation until the gut is in balance. Period.

So, in addition to the probiotics and enzymes, the diet had to be cleaned up, too. I was so proud of how far we had come, and still am, but had to do even more so in addition to our two-year stint of being gluten- and casein-free and our one-month period of being MSG-free. So, in the course of one-week's time, we are now soy-free, yeast-free, and sugar-free with the exception of a little agave syrup in a cracker which is eaten less frequently or not all.

I threw out the pretzels for good. All of the Enjoy Life snack bars and cookies had evaporated cane juice, so they had to go. I baked brownies with Xylitol which are wonderful, only in case we have to have a treat. I threw out the apple juice I was using to mix supplements with. I made a batch of Xylitol-sweetened water to use instead.

Xylitol is great. It has some laxative properties to it in larger quantities, it is an antibacterial, and you can substitute it 1:1 for sugar. There is no unpleasant aftertaste. It is purported to kill Candida yeast, too, but I am unsure if this is true or not. The only drawback? The expense. $14 for a 2.5 pound bag.

I think I could teach Gut Health 101 at the junior college now.

The organic acid tests showed high yeast, high oxalates, low vitamin C, and anemia. We are having iron studies done right now. And of course, that low Vitamin D which was practically rickets. And we live in the Sunshine State. That ought to tell you right there, that you cannot get enough Vitamin D in your food or from the sun. There are some people who are positing that autism is caused by Vitamin D deficiency and that Vitamin D deficiency is an epidemic in itself. Did I forget to say that Vitamin D prevents seizures? And, that since being on the Vitamin D I have not seen the absence seizures? Can it really be this simple?

NEW DOC prescribed some new MB12 shots: Methyl-B12 + NAC + folic acid. I am unsure if this is Dr. Neubrander's original cocktail or not (Neubrander is the one who came up with the MB12 protocol). The NAC (N-Acetyl-Cysteine) I am excited about as the organic acid test results said that Lib could benefit from NAC. NAC removes mercury. I am waiting until tomorrow in case there are side-effects, he can hang out at home. You just never know how a child will react to anything.

NEW DOC said he could not give guarantees but he thinks if we get the gut balanced and the lead out, Lib will start talking. I can always hope for that. He wants to talk so badly. I understand...it could be too late. I try not to go there.

So far, so good. Lib is a little trooper. For all we do to him, for all he has been through, he has the sweetest nature of any human being I have ever known.

We only had a brief few-second screaming fit of die-off after starting the Diflucan and the diet, for which I immediately gave some charcoal and now everything is coming along beautifully. I am getting better eye contact and Lib is eating what I am sending to school and what I put out at home. He tries different food more readily. The tactile defensiveness has lessened. I am getting lots of positive comments from everyone.

This will take time to straighten out. TIME. One and a half years ago I started on this path and I thought I had traveled to the right doctor. I could sit and cry over that, but as NEW DOC says, the past is the past, there is nothing you can do about it now except go forward. There will always be that little niggling "what if" in the back of my brain..."what if" I wasted my son's precious time? I didn't waste it, OLD DOC did. And he is rich and famous.

Bottom line is, don't think that just because a doctor writes a best-selling book and is suddenly on the talk show circuit, that this man is the right doctor for you. What happens is, after the doctor "goes Hollywood," the practice goes into crisis. There are then too many patients, not enough staff, not enough time for the doctor to review the records, remember who your child is, and prescribe a protocol tailored to your child. I have learned the hard way. All DAN doctors are not created equal, and just because someone gets published does not mean they are good. Jerry Kartzinel, now famously known as Jenny McCarthy's doctor, said he would turn no child away. No, but that child will probably be waiting three years or more to get in to see him now.

This is probably the hardest part of all, finding a doctor who can serve as a skilled guide to help navigate through this forest of symptoms and treatments. And, finding one who is local or at least nearby where he can actually put his eyes on your child. Remember, NEW DOC took one look at Lib and said, "classic inflammation." He was the one who knew what tests to order, where to begin looking.

This is a long post and I am sure many get tired of reading and give up. I publish details because I get emails from people who ask lots of questions about protocols. I did not want to publish doctor's names too much on this site because the last thing I need is someone suing me for slander. But, I'm not going to keep silent about it either. My husband is completely furious at the old doc. Feels we screwed around for one and a half years.

To end on a more positive note, Lib got into autism camp this summer. His dad is doing the music workshop for the kids so that should be a lot of fun. We have found this wonderful doctor. And, my beloved sister has moved back home to stay! I intend to have a fun summer, spending much time in the pool and at my healing ocean waters and doing all I can to help my little boy mend.

What else can I do?

Happy Earth Day

I took this picture in our back yard yesterday after it rained. Rainbows always give me hope. I have lots to tell in the coming days since we had the follow-up visit to the new DAN/neurologist on Monday. I am still processing it all.

Wish I sounded this way in the shower....

I was looking for John Hiatt videos and realized she was his backup singer for years with the Goners.

Progress

...or...what my kid ate for lunch today:

-Applesauce.
-A sunflower seed crunchy breakfast bar.
-Spaghetti made with turkey meatballs and carrots.
-Chicken nuggets cooked in homemade Italian breadcrumbs.
-Cut up pieces of apple.
-Fritos.
-Bunny Crackers I make.
-Bacon.
-Two bites of strawberries (a first).
-Some pretzels.

I remember when it was just crackers.

I, of course, worship the ground his teacher walks on. Without her, I wonder if any of this would be possible. ABA does work. She just became fully certified this year, so Lib is pretty much getting ABA or Verbal Behavior all year long. We have really been blessed this year.

* * * * * * * * * * * *

As a side note, I am loving Spring today. For some reason, my feeders are attracting a wide assortment of birds. I saw this right outside my window this morning:

These are Indigo Buntings and the one below is a Blue Grosbeak. These were taken through my office window, hence the screen.

Isn't it gorgeous? That's a little orange and yellow on the wings, the rest is sapphire blue.

Need Some Ideas, Anybody?

My talented husband is going to be creating something, I am sworn to silence about that at the moment, but he is trying to come up with a dedication for this thing, and wants it to be a kind of slogan regarding autism. We don't want it to be anything that uses fighting words, like, well "Fight Autism."

To me, when I think about what I want as a parent of a child with autism (let's be clear - with the new disorder that is labeled as autism), what I want is for the government to recognize this as the epidemic that it is (now 1 in 38 boys in England, probably more than 1 in 50 here), that something needs to be done immediately (yesterday), and for the research to be funded so we can end all of the speculating.

So, let's see I want recognition of this epidimic that is bigger than AIDS, recognition of the daily emotional and financial struggles families are going through, insurance to pay for autism treatment, government-funded research to find out why this epidemic is occurring, and HELP for families and children.

For instance, it's just not right that some states give families so much support in the form of respite care and ABA therapy in the home while other states such as ours give NOTHING except some in-home therapy until 3 years of age. The waiting list for Florida for any kind of assistance (respite care, ABA therapy, speech, OT, PT) through the Agency for Persons with Disabilities for us is now 2012. We've been on the list for three years already. So Liberty might get some services covered by the time he is 10 years old. I met a woman at an Easter egg hunt this past weekend who works for the state in the disabilities department and she said to me that I was lucky to have even gotten on the list. Meanwhile, I have a friend in Long Island who says that the state requires children with a diagnosis of autism to have ABA in the home and respite care to cover all holidays. She has people trooping in and out of her home all week long - SUPPORT. Same for folks in Pennsylvania.

Every state should have it.

If anybody can give me any input for ideas for a slogan, would you drop it my way? I want to say "help us help our kids," "give autism a voice - fund the research"...etc. Well, NOT that, but something that conveys these ideas. I don't want things like 'fight autism', 'stamp out autism.' I do like 'end autism' somehow.

And, no I am not someone who thinks autism is this beautiful mutation. I believe that our children are beautiful people, and the kids who can speak, I love what they say. Most of them seem to be so advanced in their thinking for such young ages. BUT, I KNOW now that this thing we are calling autism is a medical condition. We have dirtied up our world and there are toxins everywhere. The kids are showing us we need to change our behavior as a planet.

If you know you have a medical condition, you find out as much as you can about it and you treat it. If by treating my son, do I mean I am not accepting him? No. I accept my son as he is today. My son cannot speak. If he hurts, it hurts me. If his stomach is killing him and he can't tell me, it hurts me. If his brain is on fire and he is screaming, it kills me that I can't help him. My baby has been sick a long, long time and he is just now recovering but not because we just took him to the doctor and they knew what to do. It has been a road I don't want other parents to have to traverse.

I don't want to live in an underground society anymore. I guess I wish Barack and Michelle would take it up as their special project to help get autism research underway, to really green the vaccines, to somehow get everyone together on this and end the divided camps who rip each other apart.

Anyway, I digressed, but I know there will be those who accuse me of not accepting my son.

There are probably lots of metaphors to work with to come up with a slogan. I'll be thinking about it. Let me know if you think of something. And, thanks.

Have beach bag, will travel

Our appointment with our DAN got moved to next Monday due to an emergency he had. It's fine since yesterday, it rained cats and dogs all day and I would have hated slogging through the rain to get to the office.

In the meantime, Liberty has had so much fun over at the beach, that, even though it's still a bit cool and the weather has been windy, as soon as I tell him we need to go somewhere, he runs and gets the beach bag. He is so cute. He slings this giant bag's handle over his shoulder, dragging it on the ground, with a wide ear to ear grin on his face. He even goes and gets my keys for me.

This makes me happy because the beach is such a sensory playground. Just walking on the sand covers all of the acupuncture sites on your feet. You get a thorough massage. That, coupled with the healing qualities of the ocean water and air, it really is a therapeutic experience.

So, guess I better gear up and gas up for the weekends. The ole' Slip N Slide days just don't cut it anymore.

Oh, and did I tell you that Liberty's favorite music these days is Herb Alpert and the Tiajuana Brass? The old, old 1969 CD with the woman covered in whip cream? Yeah, that one. My life has a soundtrack to it. I find myself humming a tune and realize it's A Taste of Honey, or that theme from The Dating Game. Jeez. I love Herb and all, but, you know. I've got to get him interested in something else.

Funny, the sound of the wind or the brakes on the bus hurts his ears, but loud French horns and trumpets, no problem!

Enjoy the Ride on this Trip Around the Sun

The video below is one of my favorite songs. It's not always easy to remember or to actually enjoy the ride of life. Some times are much more difficult than others. Still, in the end, I am so grateful for what I do have and all that is going on. My father is out of rehab, back in his home and doing great! I am so grateful for that. He's such a strong person. A cool person. A really good person, my Dad. I hope I have the resilience he has as I age. My dear sister in North Carolina is coming home for a short stay in May - my beach partner - a true lover of Nature. My sister Barb was down when Dad first came home and I spent almost every day with she and my Dad at his home, and that was such precious time to me, as we always have some good belly laughs. She is hilariously funny. My oldest sister Bev lives here and doing lots of things for my father. She and I have the same tastes in movies and books and since she worked in the school system in Learning Disabilities, need I say that she is the one I take to every IEP? She is the one who helps me with the ins and outs of the school system for special needs kids. I love all of my sisters dearly. My son is doing so well, in spite of lack of speech, I think his body is finally normalizing. He's eating like a real boy!! We have a doctor who is going to help figure out what's going on. I just know it. I cherish that kid. He has a grandmother who loves him to no end and watches videos and laughs with him. He has a grandfather who adores him. And my husband is the greatest father to him. Liberty goes to the garage to see if he has come home yet each day. I love my job. I would not trade it for the world. I might not look or feel the greatest about myself anymore - I've gone and lost my looks - really been pulled through the knothole with autism and all of its grief and desperation. But, I've emerged stronger. I'm still standing! I'll get my damn roots dyed one of these days.

Easter...marks the 21st anniversary of when I first learned to meditate, in Virginia, and the first time I touched my Spirit so deeply, I was changed forever. That could be an entire book that I might attempt to write someday.

In the meantime, this Easter, the season of renewal, and hope and resurrection and rebirth...I will burn my beloved sister's pink candles she bought for me, and bask in their light, and have a day where I cherish all of my life in all of its ups and downs and joys and hardships. What is that last line in Desiderata, my mother's favorite poem? "With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy."

Yeah, I think so. Try and enjoy your trips around the sun.

Monday, Monday

Got all of the tests results back and an appointment has been scheduled for Monday morning with the new DAN!! I am so excited. I am looking forward to seeing the test results and hopefully connecting some dots.

In the meantime, Liberty is doing so well. Just in the last few weeks, he has begun to go to the potty by himself at home, at school, wherever we are. There are still some accidents, but 99% of the time, he is going independently. His receptive language has increased by leaps and bounds. He understands vocal commands like never before. He dresses himself fully, still has trouble with snaps, but he tries. Shoes and socks are no problem. Waves hi and bye appropriately.

And the eating...he ate cut up apples at school today. Some Fritos. Some ketchup on those gluten free fries. He is eating twice the amount he used to eat. Spaghetti sauce that I have snuck broccoli and carrots into, his pot roast and chili. Now eating some chicken nuggets I make with my homemade breadcrumbs. Applesauce. Any gluten free cereal bars and cookies I give him. All of that is great. The apples blew my mind. I am suddenly in recipe mode. Everything I send to school, he seems to eat, so I need new stuff to try! Maybe I should get really crazy and try a sandwich?

I keep reminding my self this is a child who ate nothing but graham crackers after his vaccinations.

Lib has also gotten the hang of using a mouse on the computer. He positions his hand properly with finger ready to point and click. Moves the cursor around, points, needs help to click. He has learned to do this by choosing clips on Playhouse Disney.

His eyes must be tracking well. Never used to. I watched him chase a fly and catch it!

By the time IEP rolls around in May, the teacher said Lib will have met all of his goals for the year. Last year was a completely different story.

It's like he made a leap overnight.

We will see what Monday brings. I am going prepared with questions and records and everything I can think of to help our doctor help Liberty.

In the meantime, we're going to go catch some good vibes at the beach.

Have a wonderful Easter weekend.

More on Gluten Free Living

I have posted a bunch of my favorite sites, some bloggers with recipes, and some places to buy good stuff on line that is gluten free and mostly casein free, on my other blog. I also have a few of my own recipes posted that might help, not many, but things I use all of the time.

Gluten Free and Casein Free Eating

If any of you guys are going gluten and casein free, or even if you have had your kids or yourself on the diet for years, check out this new blog I stumbled upon the other day. This is the link to the blog, but you will see the websites "glutenfreemom" and glutenfreekid" on the blog to click on for listed recipes. I am trying them out as we speak. I have been trying to expand what Liberty can eat, and trying to find food appropriate for breakfast, lunch and dinner is hard. The recipes are mainly for gluten free, but she tells you what to substitute for casein if you are already casein free.

I always love to pass on great finds, so check it out when you get a chance.

What She Said

My buddy Michelle refers us to another blogger and autism mom, a really great writer, for an article that we can all relate to, titled, "Helping a Friend Affected by Autism
Embrace a mother who needs to stay connected." Turn this Autism Awareness month into action! Yeah, baby, what she said. Click here.

Murky Waters

Well, what a title. I have not been posting because for the whole month of March, I feel like I have been kind of looking through a dirty window. Many areas of my life have needed attention on top of the ongoing quest for my son's well-being. And nothing has been very clear until now.

I feel April is going to be a fresh new start.

So, we might be getting somewhere now. I got a call from our new DAN's office. The blood work was in and it showed a very low Vitamin D. It was 17. My doctor said it should be somewhere between 50-70. Liberty also had abnormalities on his labs. Lots of them. Apparently, a picture is emerging because the doc said we will review all of the lab results at our next appointment, which will occur just as soon as we get the stool sample and the urine OAT test back.

I botched the urine sample and had to do it over again. Imagine getting mixed up and putting the urine specimen in a stool sample vial! Like I don't have much on my mind. So, sue me. Geez Louise. The company sent me another kit....with only one vial so I would not get confused again. Thanks, Great Plains!

Oh yeah, the stool sample? The one you have to take for three days in a row, the one you have to take your child off of the important supplements for and cringe while he regresses? After all was said and done and I breathed a sigh of relief, my husband forgot to take it straight away to FedEx and it sat in the truck. Thank God it was a cool day and the windows were down. The company said it was "probably" okay, but they could not guarantee anything. We both cried. It was not his fault. He had so many things to do, including taking care of some things for my family members. He has a lot on his mind, too. So, I might have to redo that one, but I hope not.

Looking at the labs, the picture that is emerging is viral, which is no surprise. There are lots of indications of inflammation, again no surprise, but at least we have something definitive of where we stand today anyway, and it's very good to know.

Oh---I heard such good things about Enhansa, a highly absorbable type of curcumin, that I ordered it. I had no idea it is anti-fungal, anti-viral, and anti-inflammatory. Age of Autism had an article about it when it first came on the market. Our DAN doctor at the time told me he thought it was highly overrated so I didn't try it. I just see too many people having great results NOT to try it now. The regular curcumin I did see some good results with, but it is so MESSY, everything turns orange, and everything, including us, is starting to look jaundiced.

I have stopped chelation, put everything on hold until we get some of the labs cleared up. When we return to chelation, I will probably choose the Cutler protocol. The new DAN likes IV because it bypasses the gut completely, but...I don't know. The jury is still out on that one.

My son also probably needs iron and more zinc (he's mouthing everything still and has forever it seems). The Vitamin A is still low. High lymphocytes, low neutrophils. I read if you have neutropenia your body can't fight Candida. I read lots of things. I talk to lots of people on autism sites and blogs and personal email. The research, the space it takes up in my mind. Oy! Enough already.

Meanwhile, in spite of the incredible challenges going on with my little son, he is doing amazingly well in school. He is eating double what he was eating. He is initiating things by himself. Over Spring break, which was his best ever, I found him going to the potty all by himself. That was for most of the break, on some days, he had lots of accidents. Nothing is consistent and you know what? I believe it is because of his changing chemistry. Because of the X factor we have yet to name or know how it works.

But, there is something going on and we are getting there. We are going to find out what it is, I just know it. The picture is starting to become clear after two years on this dusty old trail. And, my new DAN was right. He looked at Lib and wanted to order a Vitamin D right away. I read that Vitamin D is an anti-inflammatory, actually a hormone, not a vitamin.

It's been a long, long road.

If I focus on what was lost because of this, I could melt into a pool of tears. But, it's not what is important or relevant anymore. We just have to go on from here. This is Lib's story and it's part of ours. I can choose to go kicking and screaming and fearing, or decide to live through this with some hope of grace, with courage and determination, and with the idea that, eventually, we are going to help this child.

Of that, I am sure.

Oh --- it's beach weather here. THIS is what will keep us all S A N E while we do this thing:

Gotta
Love
Those Emerald Green
Gulf Stream
Waters

and sugar white sand....."Mother, mother, ocean, I have heard you call...."