HEALING BRODY – PART 5
I had spent the last few years living in the land of denial and being bombarded by doctor excuses for Brody’s health issues. One day, my good friend Debbie, talked me into going to a DAN! conference. I thought “Why not? It will be fun to get away for two days and have some adult time.” Little did I know, my world was about to be turned right side up.
We sat down in a convention room and waited for the conference to begin. I don’t remember who the first speaker was, but I do remember one specific question, “How many of you in here have a child or grandchild with autism?” Debbie and I raised our hands and sheepishly looked around. Would we be the only ones? My mouth dropped. There were too many hands to count. There was an electrical charge and energy in the room. Debbie and I grabbed hands. We were not alone!
All of us in the room shared one thing in common – autism, and that we were starving for information.
As the day progressed, I became re-energized. The fight that had been sucked out of me over the years was returning. Autism was much more than a brain disorder (as I had been led to believe) and I had the ability to make drastic changes in Brody’s outcome. I felt like I regained some sense of control. DAN! encouraged parents to question the status quo thinking running rampant through much of the medical establishment.
DAN! validated many of my concerns that had been dismissed by the pediatricians. I was not crazy and there were underlying health issues contributing to my son’s autistic behaviors. Unexplained rashes, constant vile smelling diarrhea were not normal. It was time to get to the root of problems and not put on another band-aide.
DAN! changed the way I looked at Brody and autism, and gave me hope and a sense of belonging. It was the kick-start I needed to begin my journey to regain Brody’s health. I couldn’t wait to get home. Brody was going on the Gluten/Casein Free Diet ASAP. I wasn’t sure what to expect, but I was optimistic.
To read more Healing Brody click here.
Sometimes we get so self-absorbed on our quests to recover Annie and Brody, we forget to appreciate how hard they are fighting alongside us.
We forget that things are twice as hard for them, take them twice as long, and ten times the effort.
We forget that they manage to smile and enjoy being kids even if they feel sick or have pain.
We forget that the littlest things can cause them anxiety, but yet they manage to try new experiences every day.
We forget that they rarely complain about the weird food and all the supplements.
We forget that they don’t get upset about our constant coaching and correction of their speech, language, and social skills.
We forget that they are not upset by our constant hovering even though they are getting older and may want privacy and independence from us.
We forget that our kids don’t gripe about hardly ever getting “down time” or time to just “be.”
But… we will not forget to recognize our children for the fighters they are. They are “tough as nails” and we’d be nowhere without them.
Thank you Annie and Brody, our precious gifts from heaven, for teaching us real love and making us better people.
ANNIE’S STORY – PART ELEVEN OF TWELVE
Annie was now five years old and I had just come out of the worst depression of my life. I decided to try sequential homeopathy as a last-ditch effort to recover Annie. I wasn’t expecting it to work. I couldn’t handle getting my hopes up only to be crushed once again. I fully intended to give up on my quest to recover Annie if sequential homeopathy was another giant disappointment.
We started homeopathy while Leah was away for the summer. While she was gone, I had seen some amazing things. Most noteworthy, Annie was becoming conversational. Prior to homeopathy, Annie could speak in sentences, but only regarding things she cared about or wanted. There was no back and forth conversation… she was just blabbering. She couldn’t ask or answer any questions.
After two months of homeopathy, she was doing both. I could actually have a conversation with my daughter about her day, what she likes, what she doesn’t like, what she was thinking about… it was a dream come true. Also, Annie’s mood improved drastically. She seemed like the happy, smiley, care-free child she was prior to her regression.
My parents noticed the change. Her school noticed the change. Our neighbors noticed the change. But I didn’t want to tell Leah for two reasons. First, because I didn’t know if these changes would last. Second, because I knew Leah was the perfect person to tell me the truth. She would tell me if Annie really had changed because she hadn’t seen Annie in two months. Maybe everyone else was just trying to make me feel better.
Leah came home and we scheduled a time for the kids to play. I held my breath and didn’t say a word to Leah about the changes I had noticed in Annie. To my delight, Leah confirmed the exact same things I was seeing. I could tell by the look on her face and the tone of her voice, she was shocked and impressed. Annie even had a rudimentary conversation with her.
I was experiencing another “defining moment” with autism. I could feel that something was different this time… maybe this was actually going to work. I allowed myself to get my hopes up… just a little.
In another prayer session, craniosacral therapy popped into my head. I heard about craniosacral many years earlier, but had dismissed it immediately because it involves therapists laying their hands on the child in order to clear energy blockages. With Annie’s sensory issues, I figured my mom and I would have to hold her down while the therapists “did their thing.” I just wasn’t up for another “scream fest” so I decided not to pursue it. But now, because of homeopathy, her emotions were under better control. Maybe it was worth a try?
Our first craniosacral session was for two consecutive hours. I figured it was going to be a nightmare. I was blown away when Annie climbed right up on the massage table and cooperated with the therapists, without even making a peep of protest. For the first time since she regressed, I could see a look of relaxation and peace on Annie’s face. She loved it. In fact, when our two hours were up, that’s when Annie got upset… she didn’t want to leave. Luckily, we were there for treatments the entire week so we were able to get her to leave without too much of a scene.
After our week of treatments, we started noticing several changes. The most dramatic was that Annie’s sensory issues were drastically improved. She no longer covered her ears, she didn’t seem sensitive to light anymore, and she was no longer as picky about the clothing she wore.
Three months later, we went back for three more days of craniosacral treatments. Prior to the treatments, Annie could not write a thing, she hated drawing, and despised coloring. She was six years old at this point, so she should have been writing and enjoying arts and crafts. After the treatments, Annie came home and started drawing elaborate stick figure drawings that were very detailed. She even drew animals and scenes. All she wanted to do was draw. She was a drawing maniac for a week and then it happened… she started writing.
She wrote story after story. She probably had all these pent-up stories in her head that she was unable to express and now, she was thrilled that she could release them. Her handwriting was sloppy and hard to read and her drawings were not age-appropriate, but we couldn’t have cared less. We were thrilled that she actually liked drawing and writing!
Every month, we did more homeopathic “clears” where we gave her remedies to clear various traumas Annie had suffered during her life. Every month we saw more incredible gains.
After two years of steady monthly improvements with homeopathy: Annie’s OCD and anxiety went away, her verbal stimming became rare, she no longer got sick every other week, her coloring looked better (she looked healthier), the diarrhea went away, she told me she was no longer in pain, Annie was on target academically (except handwriting), she managed to make a few friends, and she was sleeping through the night (AMEN).
I can’t explain homeopathy as well as I’d like to. Most people in the USA think it is crazy or simply the “placebo effect.” However, it has actually been around longer than western medicine and is very common (accepted) in places like Europe. Homeopathy believes that “like cures like” (Sound familiar? Think vaccines.) and that the body has the ability to heal itself if that healing force is not suppressed (like it often is with autism).
All I can tell you is that sequential homeopathy and craniosacral resulted in giant improvements for my daughter. They are both energy therapies, so I believe they compliment each other and may have a synergistic effect. Will they work for your child? I wish I knew. That’s the frustrating thing about autism. As we all know, a one size fits all approach does not exist. However, I believe homeopathy and craniosacral therapy are safer than some of the other interventions out there and they likely won’t hurt your child. So maybe, they are worth a try.
You are now caught up to where Annie is today. She is, for the most part, a happy, well-adjusted 7-year-old.
Do I consider Annie fully recovered from autism? No. Not yet. But I have faith that she will be.
What is my definition of recovery? When Annie can attend a “regular” school (without a para or any other supports) and be indistinguishable from her neurotypical peers. I believe this goal will be achievable for Annie in the next 2-3 years. I’ll keep you posted as our story unfolds.
One more post to follow with my thoughts and takeaways from Annie’s story.
To be continued…
For parts 1 – 11 of Annie’s story, http://ventography.wordpress.com/category/annies-story/
For more about homeopathy, http://www.healthinducedautism.com/homeopathy.html
For more about craniosacral, http://www.healthinducedautism.com/craniosacral-osteopathic-manipulative-therapy.html
What are the questions that keep us up at night? Here they are:
- Why did this happen to our children? Was it something we did or didn’t do? Was it something in their environment that we could have controlled?
- How can we help our children recover or at least live life to their fullest potential?
- What will happen to this generation of sick children as they grow into adults?
- How do we prevent this from happening to future generations… to our grandchildren?
- How can we ever die? Who will take care of our children?
- Why does it seem that so few people and organizations are interested in getting to the root cause of the autism epidemic? Why doesn’t it get the same amount of tv time and funding as other childhood diseases that are not nearly as prolific?
- What are these “canaries in the coal mine” trying to tell us as a society and why is nobody listening?
These are the questions we’re often too afraid to verbalize because it takes us to a place of such fear and anxiety that it’s hard to continue on with daily life and be the moms we are called to be. But we’re going to discuss them because we need your help. If we (parents who are struggling to find answers for their children) banded together to demand answers and share our knowledge, we know we could move mountains.
Please join our crusade for answers. Forward this post to your friends and ask them to join with us too.
For more on our crusade for answers, please visit our facebook page and perhaps give us a like: https://www.facebook.com/healthinducedautism
Well what do you know… We finally joined facebook.
Please take a second to check us out and perhaps, give us a like.
Thanks for your support!
Leah & Molly
ANNIE’S STORY – PART EIGHT OF TWELVE
To recap, Annie had just gone through a second regression from too much hyperbaric oxygen therapy and I had hit another emotional low. I knew our Defeat Autism Now (DAN!) doctor didn’t have much more to offer us since I was too afraid to try most of his suggestions.
I felt I had two choices – give up on recovering Annie or strike out on my own. I decided to take some time off from the DAN! stuff and to go it alone.
A lot of the moms I talked with on the chat boards had experienced success with Nutrigenomics. To me, it made sense to customize Annie’s supplementation based on her unique genetic mutations, so I decided to give it a try. I sent in some of Annie’s blood and anxiously awaited the return of her Nutrigenomic panel results. This test was designed to tell me what mutations Annie has in the genes related to the methylation pathway and how to support those mutated genes with supplementation. Supporting the methylation pathway leads to better brain health, immune support, nerve health, and energy.
When I got Annie’s results I was relieved and yet, strangely disappointed. I was relieved because Annie did not have any double mutations (mutations inherited from both her father and I). In other words, all of her genes were functioning to some degree. However, she did have several single mutations (or genes that were not functioning optimally). I was disappointed because the supplement plan to support single mutations was confusing and ambiguous… sometimes you need to support the gene and sometimes supplementing it could make it worse. I was back in the land of guessing and experimentation.
The plan required giving lots and lots of supplements in low doses. You were advised to start each new supplement several days (if not weeks) apart so you know if each particular supplement agrees with your child. The idea being that if adding the new supplement was the only thing you changed for your child in a given period of time, then you can safely attribute any positive/negative changes to that particular supplement.
Annie’s tantrums seemed better after starting the first couple supplements (about a month on the plan). I was so excited that I stupidly stopped waiting the advised number of days before adding new supplements. Before I knew it, Annie was on over 20 different supplements, she had gone crazy, and I had no idea what was causing it. I had to start over.
I took her off all the supplements and began again, but I quickly realized that this plan wasn’t for me. It was too confusing to try to figure it out without being able to talk with someone. I think if Annie had double mutations where supplementation is clearly needed, this plan would have worked better for me. I was back on the hunt for a new direction. HEAD BANG NUMBER ONE.
I had read a lot about Linus Pauling’s work with Vitamin C – that it can chelate, kill viruses, build the immune system, etc. So, I decided to give high dose oral Vitamin C a try. Annie’s diarrhea got worse, she got more stimmy, and became ridiculously hyper and aggressive. I called my DAN! doctor to ask for help and he informed me that the reason he does not advise high dose Vitamin C therapy is because most forms of Vitamin C are derived from corn, and many children with autism have severe corn allergies. Well, Annie is one of those children with a major allergy to corn – mystery solved. HEAD BANG NUMBER TWO.
Our doctor told us he could recommend a Vitamin C derived from Cassava, but he advised against doing high dose oral therapy. Instead, he suggested I try intravenous (IV) Vitamin C therapy. I decided to give it a try. To this day, I think the IV Vitamin C therapy might have worked, but getting Annie to comply with the IVs was just too stressful. During our first IV treatment, it took 3 people to hold Annie down (me, my mom and a nurse) and another nurse to administer the IV. Annie only spoke 1 or 2 words at a time back then and yet, she managed to mutter, “Mommy make it stop. I promise I’ll be good.” My heart broke. I knew at that moment I couldn’t torture her on a weekly basis. I went back to the drawing board. HEAD BANG NUMBER THREE.
Her DAN! doctor suggested we work on improving Annie’s sleep. Ever since we tried hyperbaric, her melatonin wasn’t cutting it anymore. She was pretty much nocturnal (only she didn’t sleep during the day either). Annie’s doctor suggested a “sleep cocktail” for bedtime – a mixture of GABA, Magnesium, Melatonin, and 5HTP. I had to give Annie high doses of all of them to finally get her to sleep. And month after month, the effects would seem to wear off and I had to keep upping the doses. For an explanation of what I believe caused this problem, please read http://ventography.wordpress.com/2011/10/19/lessons-learned-part-three/.
What I took away from all of this was that I was done with high dose supplements for good. In my opinion, there is a reason the saying “All things in moderation,” has lasted throughout the ages. I needed another new game plan. HEAD BANG NUMBER FOUR.
About this time, Leah had put Brody on the Specific Carbohydrate Diet (SCD) and was experiencing amazing results! Brody had miraculously started talking up a storm right in front of my eyes. So, I figured maybe SCD would be the missing link for Annie too. I started her on the diet right away. But, the diet didn’t seem to help Annie. In fact, she lost weight and seemed to get sicker and even grouchier. I was beyond upset. Nothing seemed to be working. HEAD BANG NUMBER FIVE.
Was someone trying to finish me off? Was God trying to tell me to give up on healing my daughter? Should I just accept that this was the hand I was dealt and stop putting every last drop of effort I had into recovering Annie? But how could I ignore her real and devastating health symptoms? I knew she was in a state of constant pain and anxiety. How could I look the other way?
Right as I was reaching the point of giving up, I got a call telling me that I had received an appointment with a DAN! doctor who had a 2 year waiting list. I truly felt like I had won the lottery! While I still had tremendous respect for our original DAN! doctor, I felt I needed a second opinion. So, I made an appointment with the new doctor right away.
I learned 2 key things from the new Doctor. One, Annie had severe metabolic acidosis. Two, there was a new chelator I could try that was not a drug, it was an antioxidant, called OSR. Once again, my hope for Annie’s recovery was renewed.
To be continued…
For Parts 1 – 7 of Annie’s Story http://ventography.wordpress.com/category/annies-story/
For more information on Nutrigenomics http://www.healthinducedautism.com/nutrigenomic-dna-testing.html
For more information on the Specific Carbohydrate Diet http://www.healthinducedautism.com/specific-carbohydrate-diet-scd-information.html
For more information on Methylation http://www.healthinducedautism.com/methylation.html
ANNIE’S STORY – PART SEVEN OF TWELVE
After trying and failing at several Defeat Autism Now (DAN!) interventions, I thought Hyperbaric Oxygen Therapy (HBOT) was going to be our saving grace. My husband and I gambled big… we drained our savings account and bought a home unit.
We were told by our DAN! doctor to go in the chamber 60 minutes a day, every day, for 2 months. At this time, Annie spent a lot of her days running aimlessly around our house. In addition, she flipped out if she was confined in any way. So, I wasn’t thinking she would enjoy hopping in our coffin sized HBOT chamber very much.
I admit, getting Annie in the chamber the first time wasn’t pleasant. However, after we completed the first session and she saw that it didn’t hurt and we weren’t going to be living in there forever, Annie loved it. In fact, she would crawl in the chamber multiple times a day. This was her way of telling me she wanted to do a session. I thought, “We’re on to something, this must feel good to her and it must be helping.”
We completed our 60 dives over 2 months. Then, we had a check in with our doctor to discuss results and do some tests to make sure Annie was healthy enough to continue treatments. I told the doctor that Annie did not have any increase in expressive (spoken) language as we were hoping for. However, she did make a big leap in receptive language. In other words, suddenly she could understand what we were saying to her. Prior to hyperbaric, Annie could only follow 1 or 2 step commands. But after our 60 dives, she could follow complex, multi-step commands. In addition, she seemed to be sleeping a little better. I was very encouraged.
After taking a month rest from hyperbaric, the doctor advised me to increase to 2 sessions a day (120 minutes a day). I truly believed that this was it – Annie’s recovery was on the horizon. But that was not the case.
After a few weeks of the increased treatments, “the wheels seemed to be coming off the tracks.” Annie’s bowel movements got worse. The diarrhea was back. The dark circles under her eyes got worse. Her stimmy-ness got worse. And most disappointing, her behavior got significantly worse. She went back to having several tantrums every day and became very aggressive. We were all “walking on eggshells” – never knowing why or when she was going to explode. It is also worth noting that Annie no longer asked to get in the chamber. In fact, she fought me about getting in. It became a daily battle.
One day, Leah and Brody came over right after we had finished a session. Leah told me that Annie’s eyes looked weird to her. Annie was staring off into space a lot (something she had never done prior to hyperbaric). Leah point-blank told me that she thought Annie was having mini-seizures and that she didn’t think we should be doing hyperbaric anymore.
I saw that Annie was regressing. I saw that my daughter did not want to do the treatments any more. I heard my closest friend tell me not to do the treatments anymore. And yet, I kept on going. It wasn’t because we had spent our entire savings. The reason I kept on going was because I had believed, with my whole heart, that hyperbaric was going to be the intervention to finally heal Annie. I didn’t know what else I could try if I gave up on hyperbaric. To me, giving up on hyperbaric felt like giving up on Annie.
This is one of my biggest regrets now. I wish I had listened to the signals Annie was giving me a lot earlier. Just like she knew it was good for her in the beginning, she knew it was too much for her when we increased the number of dives. Our children have extraordinary inner wisdom and I wish that I would have paid attention, instead of clinging to my desperate hope.
We didn’t finish our last week of “double dives”. I had finally come to my senses. We stopped hyperbaric all together. Annie’s behavior got better, but it still wasn’t great. I was dealing with at least 1 tantrum per day instead of multiple tantrums every day. Annie did not lose her gains in receptive language, but her health was clearly worse as a result of too much hyperbaric. Annie was hardly sleeping at all.
I have come to believe that the reason everything went wrong when we increased the number of dives was because Annie’s yeast got worse and she experienced too much detox, too fast.
This was a real wake up call for me. I was mad at myself for hurting my daughter. I had no idea what my “next move” was going to be. I was really “down in the dumps.”
To be continued…
For Parts 1 – 6 of Annie’s Story go to http://ventography.wordpress.com/category/annies-story/
For more information on Hyperbaric Oxygen Therapy go to http://www.healthinducedautism.com/hyperbaric-oxygen-therapy-hbot.html
We escaped. We left the 20 mile radius we tend to “do life” in and went to the big city. We were Thelma and Louise – minus the crime spree. We left autism at the door. We were free!
But don’t think that freedom didn’t come at a price. We had to leave lunch and dinner ready to heat up, supplements ready-to-go, and instructions for every possible scenario.
Our agreed upon departure time was noon, however, I was ready to go by 9:30am. Molly – not so much, as she is chronically late. It was not for lack of enthusiasm, she just couldn’t find an outfit she felt was “big city shopping” worthy.
First stop – Kohl’s. Thanks Elizabeth for the great tip you gave us about the cute paisley dress! Unfortunately, they did not have it in our size. We failed miserably at finding stylish summer dresses. They were either too grandma, too fattifying, or too hoochie coochie.
So, we aborted our mission to find dresses as a replacement for our daily, unflattering, comfy, stretch pants and t-shirt ensembles. We decided to focus our efforts on make-up instead.
One little hiccup… how do you match make-up to blonde/pale orange hair? That’s right – I tried to fix my hair fiasco and walked away with shockingly orange hair. The cut is a million percent better, but the color is… well, a picture speaks a thousand words…
Not so pretty.
We headed for the Bobbi Brown section at Nordstrom’s. But were scared off by the sea of clown faced, Chuckie doll make-up artists beckoning us to their counters. We said, “Sayonara” and trekked across the mall to Sephora instead. The make-up artists in Sephora all looked like they had come back from a rave. We asked ourselves, “Are we out of touch? Where is the dewy, fresh-faced make-up we long for? Is it out of style? Why does it elude us so?”
As soon as these thoughts crossed our mind, we were accosted by a woman with flaming red hair and make-up to match, asking us to sit in the make-up chair for a consultation. I decided to go for it (Molly gave an evil cackle as I was the guinea pig). To our surprise, my make-up artist was pretty darn good. She listened and was patient and I walked away with an everyday make-up look I can be proud of. According to Molly, it makes my eyes “pop” and my face “glow from within” (minus the two “blemishes” on my cheek). Look how much fun we had in Sephora…
Molly’s turn. Molly is a fan of Bare Escentuals and insisted on going to their boutique for a consult on how to do eyes and lips. We had to wait for Molly’s appointment, so we decided to get a cup of tea to kill the time. We were shocked and dismayed when they told us the amount we owed for two measly cups of tea… we had to take out a second mortgage on our houses! Since when has tea become $5.00 a cup??
The make-up gal Molly was assigned to in Bare Escentuals looked like she was all of 13 years old. Molly requested a natural, every day look. However, she walked out sporting 10 pounds of very “un-natural” purple eyeshadow. We wondered if the girl has been formally diagnosed with MLD, “Make-up Lingo Dyslexia.”
Molly decided to risk the clown faced make up artists at Nordstrom’s because she had become obsessed with this picture which she saw at the Bobbi Brown make-up counter:
We don’t ask for much in life… was it too much to ask for our make-up to look like this… our definition of dewy, fresh-faced, 2012 make-up?
Back to Nordstrom’s we trotted. Molly got right in with the make-up artist. She asked the lady to re-create the look in the picture. However, on Molly, the eyeshadow did not look quite the same. On a twenty-something, the glitter looks pretty, but on a 30-something mom, the glitter was a little too disco. But the make-up artist did a similar look (minus the sparkles) and Molly was thrilled.
We learned a valuable lesson – don’t assume clowns can only do clown make-up. If we are ever allowed out of our cages again, we plan to make another appointment with this lady to learn additional make-up looks.
What a successful day. Both Molly and I left the mall feeling pretty, the closest we’ve felt to our pre-autism selves in a long, long time. We actually spent 6 six hours without thinking about or discussing autism, even once. We were refreshed. We had a new pep in our step.
Molly walked in her house only to be greeted by her husband who said, “What’s up make up face?”
WHOMP WHOMP… feelings of prettiness flushed down the toilet. Maybe Molly should have gotten a matching hoochie coochie dress to go with her new “face” after all.
Up next: We’re starving… new diet is in jeopardy. Stay tuned for the continuing saga of “Recovering from Recovery.” -L&M
For more “New Year, New Us” posts and our ongoing quest to recover from recovery, go to: http://ventography.wordpress.com/category/new-year-new-us/. How are you “recovering from recovery?” Please share with us your tips and suggestions.
A shout-out to http://puzzledmommy.wordpress.com/ - we love https://www.birchbox.com/. Since we don’t get out much, we love having the alternative of the latest and greatest make-up products coming right to our door. Great find.
A shout out to Rob who had the dishwasher unloaded and Annie’s bed made when I got home. You’re the greatest. -Molly
L&M CONFESSIONAL: We know we are giant hypocrites. We just blogged about the toxic ingredients found in make-up. We had good intentions to find healthy, organic make-up. But once we saw the illustrious Bobbi Brown picture, it was all over for us. Our willpower was gone. We were a marketer’s dream. We fell for the promises made by that picture… that we too, could look like doe-eyed twenty year olds and we need poison make-up to do it. Please forgive us.