ANNIE’S STORY – PART TWELVE OF TWELVE
You may be asking, “What’s point of Annie’s Story?”
One point I wanted to draw attention to is that significant progress past the age of five is possible. I have lived it with Annie.
Most of the recovery stories told in the autism community are about children who snapped out of it around age three from just a few interventions. While I am happy for those children and parents, I think there needs to be more discussion about gains made by children after age five. Their stories may not be as dramatic. Their improvements may come slower, but they do happen. In my opinion, hope should not be abandoned once our children reach a certain age. Those of us with older children need to share our successes, no matter how small, to keep each other going.
I also wanted to share a recovering story that had a lot of twists and turns, gains and losses, ups and downs. Our path has not been straight. I had to fail miserably many, many times in order to stumble upon the right combination of interventions to help my daughter. I pray that other parents can learn from my numerous mistakes and perhaps, have an easier journey.
Much to my dismay, Annie did not make significant gains due to one “magic pill” and she did not recover overnight like you often read about on the internet. The skills she has recovered are the culmination of a lot of interventions and four years of persistence.
While sequential homeopathy and craniosacral therapy had the most dramatic results for us, I believe many of the other things we did (and still do) have played a part in Annie’s progress. Just like lots of health assaults caused Annie to regress in the first place, I believe lots of treatments have helped her come back to us. To summarize, the combination of interventions that I feel have gotten Annie where she is today are:
- Diet – GF/CF, eliminating allergy foods, rotation diet, paleo diet, organic, no processed foods
- MB12 shots
- Mild Hyperbaric Oxygen Therapy (HBOT)
- Applied Behavioral Analysis (ABA)
- OSR #1
- Sequential Homeopathy
- Craniosacral Therapy
We are no longer doing HBOT or OSR, however, Annie is still on all the rest of the items listed above.
The third and final reason I told this story is purely selfish. It was to have a written record of all we’ve been through as a family, how far we’ve come, and all that I have to thank God for. I certainly have days when I like to wallow in sadness, self-pity, and worry for the future. But when those days come, I am going to read the following to remind myself that I should not complain. Things are not perfect, but wow…they are so much better than they used to be.
I am thankful:
- For every time my daughter is blabbering away about nothing (verbal stimming) because I remember when… she didn’t speak one word.
- For every time my daughter leaves toys strewn all over my house because I remember when… she wouldn’t play with any toys at all.
- For every morning when it takes my daughter a half hour to pick out an outfit that she will agree to wear to school because I remember when… she was so “out of it” that she didn’t even realize she was wearing clothes.
- For every time she pesters me to buy her a million toys when we go to a store because I remember when… bringing her to a store resulted in a meltdown of epic proportions or she’d get so fixated on one toy that I couldn’t get her to move.
- For every time my daughter interrupts me because I remember when… she wouldn’t acknowledge my existence and didn’t want to interact with me in any way.
- For the little scraps of paper my daughter leaves all over my house because I remember when… she couldn’t write, draw, color or cut one thing.
- For every time my daughter tries to play with another child, only to be rejected or made fun of, because I remember when… she isolated herself and stayed in her own little world.
- For every time my daughter grabs my face, turns it towards her and says, “Look!” when she wants my attention because I remember when… all she did was stare at the ground.
If Annie had not regressed, I would have taken all of this for granted. I have come to realize Annie’s regression into autism is exactly what I needed to put life into perspective. Things that used to “rock my world” no longer cause me to blink an eye. I know what true pain and suffering is and I know true joy as well.
I’ll keep you updated on Annie’s journey. And please let me know of any interventions that have worked for your child. I’d be nowhere on this journey without the advice of smart parents who are fighting every day to make their children’s lives better.
We were given these children for a reason. I think there are certain traits we share in common. Never giving up on our children is number one.
To conclude Annie’s story, I thought it would be fitting to provide a summary of her journey into and her journey (thus far) out of autism. Seeing her progression in one place, in my opinion, emphasizes how far Annie has come. If you are interested, please click the following link: http://www.healthinducedautism.com/annie-and-brody—then-and-now.html.
For parts 1-11 of Annie’s Story, http://ventography.wordpress.com/category/annies-story/
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
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
ANNIE’S STORY – PART SIX OF TWELVE
After Annie’s regression, I saw some encouraging gains from starting her on the Gluten Free Casein Free Diet (GF/CF) and some basic supplements. I had read all about the Defeat Autism Now (DAN!) protocol and was anxious to try it. I knew I was at the point where I needed professional help in order to get Annie to the “next level.” So, I found a DAN! doctor and made an appointment as soon as possible.
The doctor’s first step was to order tons of lab testing – blood, stool, urine, etc. The results confirmed what I already knew; Annie was a sick little girl!
Since Annie was already on the GF/CF Diet, her doctor wanted to begin by addressing her food allergies. According to the lab test, Annie was allergic (“sensitive”) to just about everything. Her doctor asked me to eliminate all the foods she was allergic to for 60 days. This was another drastic diet change. On top of eliminating gluten and casein, I no longer let Annie eat corn, soy, additives/preservatives, food coloring, chicken, potatoes, tomatoes, and numerous fruits.
I was overwhelmed. I had to learn to make everything from scratch. This was not easy for me since my idea of cooking was heating something in the microwave or thawing a frozen dinner. Annie seemed to hate everything I made. But after a period of trial and error, and a lot of help from my mom, I finally found new things she would eat. After 60 days on the elimination diet, Annie’s gut issues were significantly better and her language took another jump. Even though her doctor said I could add back in some of the foods Annie was allergic to, I decided to keep her on the diet. I didn’t want to do anything to cause more inflammation to her gut.
Next, the doctor wanted to attack Annie’s yeast (candida). He wrote us a prescription for Diflucan and I filled it right away. But once I had the pills, I was too scared to give them to Annie. I just stared at them every day, but couldn’t bring myself to give them to her.
This was the beginning of what Leah and I call my “supplement graveyard” – where supplements go to die. I have a cabinet, filled with supplements, that I once thought were going to be the “magic bullet” for Annie. But now, I have given up on them for various reasons and yet, I still can’t bring myself to throw them out. They are like my pets. I admit it – I am a supplement hoarder.
But back to Diflucan. From what I had read on the internet, Annie would have to be on and off of Diflucan (or other, even stronger prescription antifungals) for a long time in order to keep the yeast under control. To me, that just didn’t seem like it would be healthy for Annie in the long run. Since I had made a vow to follow my “mom instinct,” I opted not to give her the pills and explained my rationale to my doctor at my next appointment. I asked him if we could try natural antifungals instead. To his credit, he did not make fun of me or put me down and agreed to follow my intuition.
I tried probiotics, grapefruitseed extract, olive leaf extract, monolaurin, caprylic acid, uva ursi, and oregano oil. I tried them in various combinations and potencies. I rotated them. I tried everything to make them work. But the lab tests proved I was doing little more than keeping Annie’s candida in check. It hadn’t gotten worse, but it wasn’t any better either.
My doctor and I were at a stalemate on the yeast issue, so he moved on to other suggestions. He helped me add several key vitamins as indicated by Annie’s lab tests like: Vitamin D, Riboflavin, Magnesium Malate, Zinc, Co Q10, GABA, and Inositol. He told me to give Annie Melatonin and 5HTP to help with her sleep issues (they helped her fall asleep, but then she’d wake up at 2am ready to rock-and-roll). Lastly, he prescribed Methyl B12 shots to be given every 3 days.
From these additions, we saw more exciting progress. Annie’s vocabulary continued to grow, she was more aware, less stimmy, and her sensory issues were better. The most dramatic change came from the B12 shots. After a month of the shots, Annie was back to the social little girl she was before her regression. Once again, she marched right up to kids desperately trying to play and talk with them despite her limited language.
Next, my doctor spoke to us about chelation. He believed Annie could benefit from EDTA suppositories, since she had extraordinarily high levels of lead in her system (along with plenty of other heavy metals). I read about EDTA for myself and learned about the possibilities of chelation disturbing mineral balance in the body and/or the heavy metals doing additional damage to Annie’s brain on their way out of her body. The risks seemed too high, so I declined and asked my doctor if there was anything else we could try.
He suggested nebulized Glutathione as a way to improve my daughter’s immune system and perhaps, get the body to chelate itself. Well, that process was a nightmare. I had to wrestle Annie to the ground and try to hold a mask on a kid with sensory and anxiety issues! Not fun. And on top of that, it made her horribly hyper and stimmy. I wanted to try oral or topical Glutathione next, but the doctor informed me that they often lead to a yeast outbreak so, I gave up on Glutathione altogether.
Our doctor, bless his heart, was still willing to work with me despite all of my neuroticism. His next suggestion was the Hyperbaric Oxygen Chamber. Once again, I did my homework. But this time, I had a good feeling about it. For some reason, it made sense to me. I felt like inflammation and lack of blood supply to the brain were at the core of Annie’s issues and it seemed logical to me that hyperbaric could really help. I was beyond excited. We drained our savings in order to buy a home hyperbaric chamber. I could not wait to get started. I was fully expecting a miracle.
To be continued…
NOTE: I want to make sure that nobody thinks I am bashing DAN! doctors or the DAN! protocol. The DAN! doctors I’ve encountered are amazing human beings who truly want to help children with autism (in fact most of them have children with autism themselves). I know the DAN! protocol has recovered or improved the lives of many children and families struggling with autism. For Annie, I believe the DAN! interventions we did improved her health dramatically and laid the foundation for what was to come.
FOR PARTS 1-5 of ANNIE’S STORY: http://ventography.wordpress.com/category/annies-story/
For information on:
Allergy therapy: http://www.healthinducedautism.com/allergy-therapy.html
Candida treatment: http://www.healthinducedautism.com/candida-yeast.html
ANNIE’S STORY – PART FOUR OF TWELVE
After Annie’s regression, I spent three months being held hostage by depression. I spent my days crying and praying Annie would come back to me to no avail.
On her second birthday, something made me “snap out of it.” I started hearing a loud clock, ticking over my head, reminding me I had no time to waste (this clock still plagues me to this day).
I was ready to take action. If early intervention was key, I was ready to intervene. I was a computer researching madwoman.
One day, while reading about therapy for autism, I stumbled on the words:
Autism – Recovery is Possible.
This was, for me, another defining autism moment. Those four words gave me the hope I had been missing for the last several months. I had never heard children could recover from autism, let alone did I know anything about how health relates to autism. My brain was on fire with excitement. I did not leave my computer for the next week. I read about special diets, supplements, chelation, etc. until I thought my eyes would fall out.
“Sign me up; where should I start?” I asked myself. The Gluten Free Casein Free (GF/CF) diet seemed pretty low risk. I called my mom to ask her what she thought. She thought it couldn’t hurt, so I immediately called my husband and asked him to meet me at Whole Foods Market (even though it was 8pm). I had him watch Annie so that I could concentrate on buying a whole new array of foods.
I made Annie go GF/CF cold turkey and she was not pleased. Prior to the diet change, she lived on cheese and pizza. Annie went on a hunger strike and I contemplated throwing in the towel, but something told me to keep going… I had to at least give it two weeks. Prior to the diet, Annie walked with her head down and arms out to the side like a robot, making strange “gunk-gunk” noises all day long. Her noises were like nails on a chalkboard to me.
After 2 weeks of the GF/CF diet, it was like a fog had been lifted for Annie! She actually looked up for the first time in months. She even looked in my eyes occasionally. I felt like she was aware of my presence again and she cared whether or not I was around. She started using a few gestures and even a word here and there to communicate with us.
Although the GF/CF diet certainly wasn’t the dramatic cure for Annie that I read about on the internet, her subtle improvements were enough to keep me going. I knew I was on the right path with the diet, but I needed to keep adding more building blocks.
Up next…supplements. I was off to the races!
To be continued…
Annie’s Story Part 2 http://ventography.wordpress.com/2012/02/08/the-prequel/
For more information on the GF/CF Diet go to http://www.healthinducedautism.com/gluten-freecasein-free-gfcf-diet.html.
ANNIE’S STORY – PART THREE OF TWELVE
To refresh your memory… Annie had just recovered from back to back assaults to her immune system – a negative reaction to the varicella vaccine, rotavirus, and a brown recluse spider bite.
I then made the brilliant decision to take Annie to a children’s water park for a day of fun. Much to my dismay, Annie took several sips of the nasty water while at the park. The water was contaminated with “God only knows what” from all the toddlers with swim diapers running around in four inches of standing water.
Two days after our visit to the water park, Annie started having diarrhea with a vengeance! This was not your ordinary, run of the mill diarrhea. She had it at least 8 times a day. It came out with such a force that it could shoot across the room (right past her diaper). It was almost chalky white in color and had a smell so bad that I cannot find the words to describe it. The diarrhea would eat her skin off, making her look like she was covered in acid burns that eventually bled and scabbed over.
Every time the diarrhea came, her entire body would tense up, she would begin to shake all over, and then let out a blood curdling scream. She could not eat or sleep. She turned ghostly white and got severe dark circles under her eyes. She began to walk on her toes (I thought it must be due to her gut pain). Even though she hadn’t eaten in days, her belly was bigger than ever… swollen and bloated like the kids you see on television that are starving to death.
The only time we left the house was to go to the pediatrician for another useless visit… only to be told she has “toddler diarrhea” and that it was normal. “NORMAL!” I screamed. I knew there was nothing normal about what we were experiencing. That was the last time I set foot in that pediatrician’s office.
After the diarrhea persisted for a month, I realized that Annie’s personality had changed dramatically and she didn’t seem to be snapping out of it like she did during previous illnesses.
She didn’t seem to notice when I walked into the room anymore. She wouldn’t look at me. She wouldn’t respond to her name. She didn’t want to read together. She wouldn’t talk or answer questions. I thought – well, who wants to talk when they feel sick? She’ll get her words back. But they weren’t coming back.
Annie started playing in unusual ways… lining things up, doing the same things over and over. If I tried to interact with her, she would grab my hand and escort me to another room… her way of telling me to go away without words.
She started covering her ears even when there was no sound. She was doing it in anticipation that something might be too loud or anxiety provoking. She didn’t want to play with other children anymore.
I knew we had a big problem. I took her to the Emergency Room to see if they could figure out why she was still having diarrhea. They did a stool test and determined she had super high levels of salmonella. I was again advised to let it run its course.
Two weeks later, I got a call from the state department of health. They wanted to educate me on how to prevent the spread of salmonella in our house. Did I know to clean my counters and my hands after touching raw meat? Questions of that nature. (Apparently, hospitals have a duty to report cases of salmonella). I tried not to get offended.
The lady on the phone then proceeded to ask me how I thought Annie got salmonella. I told her she got sick right after our visit to the water park. Her interest perked up when I mentioned the water park. She asked me if we had been to a particular water park during a particular period of time and I said yes.
She let me know that there had been a massive outbreak of salmonella from the very park we visited and that the children’s water area had been shut down for investigation. Just my luck.
Now I knew what was causing the diarrhea, but still had no idea when or if my daughter’s personality and developmental milestones would return. After two months, the diarrhea lessened (to a couple of times a day), but there was still no trace of the Annie I used to know. What had stolen my little girl?
Then came the life changing Supernanny episode that I wrote about in a earlier post. The episode that gave me a name for the thief that stole my daughter… AUTISM.
I knew that my daughter was trapped in a different world. I’d like to tell you I immediately took action and started trying to bust her free, but that would be a lie. The truth is, I became paralyzed. I went into the second worse depression of my life and did nothing but cry and pray this nightmare would go away for the next three months.
To be continued…
Annie’s Story Part 2 http://ventography.wordpress.com/2012/02/08/the-prequel/
ANNIE’S STORY – PART TWO OF TWELVE
You heard the story of when and how I first realized Annie had autism. Now, I want to back up and tell the story of what happened prior to my night of Supernanny hell.
Annie had a rough birth experience. My epidural was turned up way too high causing her a lot of distress. Her umbilical cord was knotted and way too thin (diameter of a pencil when a normal cord should be the diameter of a finger). She was born with a MEGA cone head. I am talking Saturday Night Live Cone Head. The hospital staff, thinking they were doing me a favor, molded her head to look normal over the course of a few hours. Now I know they should have taught me how to gently mold her head to look normal over the course of a month. They applied way too much force to a newborn skull. All of these things, I believe, contributed to Annie developing Sensory Processing Disorder.
I didn’t notice her quirks because I was a first time mom and had no one else to compare her to. But my mom noticed right away. ”She’s so sensitive,” my mom kept saying. Gradually, I realized what she meant. Everything was too bright, too loud, too windy, and too itchy for Annie. But I found ways to work around it and as she got older, she seemed to be outgrowing it.
Cut to Annie as a one year old. She was the happiest baby ever. Just a bundle of smiles and laughs. So interactive and bright eyed. She could point to any animal, color, or body part you asked her about. She waved, blew kisses, and played games like “so big” and “peekaboo.” Strangers would routinely stop me and say, “Your baby was smiling and waving at me, so I just had to come and say hello.” Annie had hit all of her developmental milestones (crawling, walking, talking) right on time. This was one of the happiest times in my life. If only I had known what was to come… I would have cherished those moments even more.
Shortly after Annie’s first birthday, I took her to the pediatrician for her one year vaccinations. Prior vaccines made her develop a low grade fever, swelling at the injection site, crankiness, and sleep issues, so I wasn’t looking forward to our visit. Annie received the varicella (chicken pox) vaccine along with three others that day. Within 48 hours of receiving the shots, Annie came down with a full blown case of the chicken pox. “Very unusual,” her pediatrician said. But he told me there was no cause for alarm and I believed him. She got over the chicken pox after two weeks and all seemed well.
At 18 months, I took Annie to a Discovery Toy party with tons of other toddlers in my neighborhood. Twenty four hours later, Annie had a high fever and diarrhea. My baby’s second major illness. I figured she would recover in a week, but a week passed, then the next, then the next… I kept taking her to the pediatrician and calling to ask, “Is this normal? Is it okay that my daughter has had explosive diarrhea and a fever for a month?” I was informed that this was the normal course of rotavirus. It was NO BIG DEAL.
Finally, the diarrhea stopped and the fever went away and we had two glorious weeks… my sparkly, happy baby was back!
I took Annie to the park and she was filthy from playing with the other kids in the sand. Into the bath tub she went. I was scrubbing the dirt off her ear when I noticed… “That’s weird – what are those two puncture marks on the top of her ear? Are those fang marks?” I asked myself in horror. I started to panic. “What horrible creature bit my child?”
By the next morning, her ear had swollen to twice its normal size and turned purple. I gave Annie some breakfast and she promptly vomited. She had a fever and chills. I was now officially freaking out.
Back to the doctor we went. We all suspected this was the work of a brown recluse spider. But since nobody knew for sure, we were given a topical antibiotic cream and told once again, to let it take its course. “This is so close to her brain,” I told the doctor. “Will it affect her brain?” I asked. He chuckled and said I had nothing to worry about.
During the next 2 weeks, Annie’s ear looked completely disgusting. I was genuinely worried it was going to fall off. The tissue turned black and looked like it was rotting away. But somehow, my little trooper fought off the venom and eventually her body healed itself. Once again, Annie was back. Hooray!
We took it easy for a few weeks and stayed close to home. Then, a friend invited us to meet them for a play date at a local water park for children. Annie hadn’t been out of the house in weeks. She deserved to do something fun I told myself. I agreed to meet them there.
The kids had a blast running around in the four inches of standing water in their swim diapers. Occasionally, Annie would fall down and take a big sip of the water. I tried to explain to her why she shouldn’t drink the water, but it didn’t seem to register. I was disgusted, but I figured, don’t all kids drink gross water at some point in their life? I know I did and I survived.
By the time Annie was 20 months old she had dealt with:
- Oxygen deprivation in utero
- Head trauma at birth
- Severe negative reaction to varicella (chicken pox) vaccine
- Month long bout with rotavirus
- Brown recluse spider bite
I believe it was all of these things together, occurring in a short period of time, that weakened Annie’s immune system to the verge of collapse. She was no longer able to deal with the insult to her health that came next, the “straw that broke the camel’s back.”
To be continued…
For Part 1 of Annie’s Story: http://ventography.wordpress.com/2012/02/02/the-super-nanny-episode-that-changed-my-life/