Recovering Ashley

This month everyone is talking about gluten, because it’s Gluten-Free Awareness Month. Some of my friends have shared their own personal stories, and I had this little birdie on my shoulder lately telling me that there is something I should share too. Only it isn’t my story, it’s Ashley’s story, or the abridged version anyway ;-) To go into every detail would most certainly be an entire book, not a post on a blog.
There is a huge piece of our family equation which I almost never discuss. Deep breath… Autism.
Why? Because aside from the few (occasionally painfully noticeable) symptoms of autism remaining in Ashley, we are a crazy-happy bunch. And we have so much to be happy about. For one thing, Ashley has recovered extensively from autism.
How has she recovered so much? Well, since Ashley lost her health insurance (two and a half years ago), and therefore lost her occupational and other therapies that were covered by health insurance, I can say without a doubt that she has come so far because of biomedical treatments. And only because of biomedical treatments. That isn’t to say that her therapies were unhelpful, just that in the last two and a half years she has recovered with biomedical treatments alone.
Biomedical treatments are another way of saying holistic treatments. That is, you look at the individual, and the whole system of the individual. We did this with our naturopathic doctor (N.D.) and two different DAN! doctors. DAN! stands for Defeat Autism Now, and when you find a great DAN! doctor (we actually saw a few we didn’t like first) they believe two things: Autism is treatable, and autism is preventable.
What does that translate to? Autism is triggered, either in the womb or thereafter. In Ashley’s case it was triggered after she was born. Ashley suffered two near death vaccine reactions, and after the second one she completely stopped developing. Between the ages of one and two were the worst. She couldn’t sleep (she didn’t sleep through the night until she was 3), and all day long she: shrieked (oh, the shrieking…), flapped her hands wildly, banged her head on the floor and the wall, and did self-stimulating repetitive behavior—mostly opening and closing drawers and pushing a toy back and forth (for hours).
What didn’t Ashley do before she was two years old? She didn’t talk, respond when spoken to, or physically move (she occasionally scooted on her behind, but neither crawled nor walked). She didn’t touch most objects, feed herself, or swallow solid food. Ashley had severe sensory processing disorder (she was hypersensitive to touch, motion, and noise). I made her food, pureed it, and spoon fed her (no quick task for a baby between the ages of one and two). During that time we were working around the clock with multiple therapists (occupational, speech, physical), some of whom will always be dear to my heart.
Many of Ashley’s symptoms of autism went away with gluten-free / casein-free diet alone. She stopped flapping her hands, banging her head, and freaking-out constantly. She also discontinued her self-stimulating repetitive behavior. All of this with diet alone. But there were other problems…
Prior to January, 2009, or until Ashley was 4 and a half, she mostly just labeled objects (cat, dog, cup, etc.) and echoed speech (Me: “Ashley, do you want a drink?” Ashley: “Drink.”) Until the last year or two Ashley was plagued with candida and other bad bugs that caused constant diarrhea. Additionally, her N.D. and DAN! doctors have found her to be in need of (through urine and blood tests) a variety of vitamins, minerals, antioxidants, and essential fatty acids (namely omega 6 in her case, which is interesting since omega 3 is what people usually assume they need most).
I have been giving Ashley around 15 supplements a day for about three years now. Some supplements with food, some in food, some away from food—throughout the entire day. I know 15 supplements a day sounds crazy, but I’m used to it. Sometimes I do it without realizing. Did you ever arrive in your car at home, and suddenly not remember driving there? It becomes automatic. Furthermore, much like the reaction Ashley has to gluten and casein, Ashley’s reaction when I run out of her vitamins is equally traumatic. Both cases result in her not talking, but shrieking instead. Bottom line: Diet and supplements are crucial for her.
A few of you may remember about a year and a half ago I posted that, “Miracles do happy—My daughter can talk!” See, when we tested Ashley to find out if she was carrying mercury, aluminum and other toxins or heavy metals (two years ago), her doctor told me, “I’ve never seen so much mercury [in a person] before.” That’s when we decided to chelate (detoxify) Ashley. And when she finished her first round of chelation… Ashley could talk. And I mean like out-of-nowhere—full sentences! The only analogy I can think of that would be similar is when someone wakes from a coma. Her awakening from autism was that instant and dramatic.
However, the type of chelation we did (DMSA skin cream) was not without side-effects. We used the cream six days a month (split into two groups of three). It was really terrible in the last month (we did a round of three months). During the last three days Ashley regressed. Meaning: Some symptoms of autism came back and were quite pronounced. Namely, Ashley couldn’t use her words (notice I said words. Remember, she didn’t speak in sentences yet). She screamed instead, hit, and threw things.
I still felt like the DMSA cream was worth it though, when after that last day of treatment she came out of the regression and spoke to us for the first time. She was 4 and a 1/2 years old.
We tested Ashley again, and sure enough noticeable amounts of mercury, aluminum and other poisons had been excreted. Thank God.
However, our doctor explained the situation (based on the tests), and said we had removed, “the tip of the iceberg.” She also said that since we had last chelated, there was a new product, a super antioxidant, created by a famous doctor, that our doctor herself had been taking. The doctor who created it (Boyd Haley) had also taken this supplement for two years. It was proving extremely safe in studies, not to mention very effective at helping the body to do it’s job of detoxifying.
So we are currently on our second round of this antioxidant, called OSR (in addition to all the other supplements Ashley needs), and we have seen even more progress, with zero side-effects. The DAN! docs have found even greater success by combining OSR with IMD, so we have been giving Ashley that as well. We (finally) successfully treated the candida and other dysbiosis with Biocidin. The symptoms of autism that remain are decreasing, and who knows, she may one day have no symptoms left at all. I know it’s possible. =)
I believe a person’s success is not measured only in academic achievement, but also in well-being. In Ashley’s case, helping her become well has not been simple, but we did it, and it was worth all the effort. What I want most for Zoe and Ashley is to be healthy and find their passion, whatever it may be. We are all born with gifts, and it’s my job to help them find those gifts.
Love, Kelly

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Comments

  1. says

    Thank you for this post! I know it is hard to talk about, but we have so much in common. I have a 5 3/4 year old son, who is now mostly recovered from autism. We also use a D.A.N! doctor, have chelated, and take a full schedule of supplements daily. The diet is essential as well, and when we have tried to be more lenient with the diet, the symptoms have come right back. We use your recipes daily! Today, after 1 1/2 years of this, he is in kindergarten, playing drums, computer, loves reading and math. It is amazing, I now have my child back! Life is so good and I am so grateful for his health, and will never take him for granted. I just thought I would share our story, and tell you thank you for all you do!
    Stacey Beck

  2. says

    I’ve been reading your blog for a few months and have enjoyed every entry!! ( : Thank you so much for sharing such an intimate picture of your life and your daughter’s journey with autism. What an amazing story!

    You have mentioned problems with candida and that the new supplements Ashley is on has done away with her symptoms. Do you think it was the OSR that did the trick?

    Again–thank you for being so open about your family’s story. Wonderful to hear and I wish your family the best!!

    Julia

  3. says

    Hi there,

    Thank you for this wondering and inspiring post. I have a daughter who is non-verbal and who also has autism and apraxia. She is going to be 4 in August and with diet (GAPS diet) and supplementation we have seen HUGE improvements, although we look forward to the day we hear her beautiful voice.

    Funny enough we had our first appt with our new DAN doctor this afternoon. We haven’t tried chelation yet, but are looking forward to trying it. We’re hoping she will have similar successes as your daughter.

    Thank you for sharing your triumphs and Ashley’s success with us. It helps more than you know. :)

  4. Arlyn says

    Amazing post! I’ve also been doing biomedical with my daughter for 1yr. and she is a totally different child! I love to read and hear stories like your daughter.I try my best to inform friends about vaccines and nutrition.Thanks for sharing =)
    Arlyn

  5. says

    Thank you so much for sharing Ashley’s story! I knew she had autism from reading some snippets here and there on your blog and in your book but it was great to read a post on the process of her recovery. My son also has an ASD diagnosis and has made enormous gains through diet and supplementation. He too takes about 15 supplements a day. I don’t think he even knows what regular applesauce tastes like because his is always spiked with various supplements. He does see various therapists but I believe most of his gains have been achieved through his gfcf diet and supplements. I’m so happy that Ashley is doing so well. She is so lucky to have you as her mother. Please keep sharing her progress with us. Your family’s story is such an inspiration!
    Sincerely, Lisa G

  6. says

    It is so wonderful that you have shared this story. It is such a powerful testament to how natural means/biomedical treatments can be a help to people, to children, and especially children with a condition like autism.

    Thank you for sharing Ashley’s story in such detail and for explaining so thoroughly what Ashley’s situation is and how it is that you came to giving her therapy through food and supplements. Thank you for the HOPE that is present in this post.

    I also am without insurance, and have come to a gluten-free, dairy-free existence (and I *should* be sugar-free, too, but that one is a lot harder for me) because of symptoms I have experienced. It may be I have Celiac disease, it may be some other immune system or autoimmune condition I am experiencing. I don’t really know because I can’t afford to get tested and figure out what is going on in medical terms. But I do know that when I don’t eat gluten, dairy, and cane sugar I am *better*, the quality of my life is improved. I don’t need a doctor to know that.

    Just as a disclaimer: I am not advocating that people ignore medical doctors and the tests and treatments that they recommend. I just know in my situation, where non-emergency care is not available to me right now, I have had to do *something* and the something I was led to was a GFCF way of eating.

    I am just so excited to read how Ashley’s life has improved through diet. I am thankful for this site, where you offer hope and options to people who choose to avoid the foods that make them sick. I am grateful that you have taken this challenge in your’s and Ashley’s life and proactively addressed what you *can* do — that you have become empowered and now that empowerment is shared with others through this site.

    Here’s to Ashley’s continued improvement, here’s to more success for this site, and here’s to hoping that this story helps a lot of other people “out there” who may be looking for some answers. :)

  7. says

    You are so brave- to live this, to share this and to soldier on. Congratulations on your many accomplishments and may there be many more.

  8. says

    This is such a beautiful post, as it shows how truly hard you and your family have worked to bring forth health to Ashley. My heart goes out to you, Kelli, and I know that the future holds promise, miracles, peace and love.

  9. says

    What an amazing story Kelly. You and your husband are to be commended for taking an approach most are not willing or do not want to find the time to expend. You truly show your love for your family and willingness to do whatever it takes to help them. How inspirational!! Our best to all of you.

  10. says

    I’m a frequent reader, but not a frequent commenter. I just had to come out of the woodwork and tell you thank you for sharing such a story. It’s beautiful how your family has taken the research and experimentation (diet-wise) into your own hands. I’m always inspired by people who don’t accept diagnoses at face value, but instead figure out for themselves what works.

    I don’t know much about autism-spectrum disorders, so thank you for sharing your story.

  11. Anonymous says

    Wonderful story, you have been through alot. What a great mom!! Have you ever considered not doing any grains at all for awhile? The GAPS diet is what I’m suggesting. Dr. Natasha Campbell McBride suggests that gluten/casein free helps but won’t fully heal until you remove all grains. Have you seen her speak? Here’s her latest speech…. http://vimeo.com/10507542
    The 2nd half is where most of the info is at.
    It’s VERY interesting!!!

  12. says

    Thanks so much for sharing Ashley’s story and your journey. It will give so many people hope. She’s lucky to have chosen you two to be her parents :)

  13. says

    Your story is so inspiring, and also a reminder of why I don’t want to immunize when we actually have kids. I can’t even imagine the heartbreak that you have had to go through, but you have stuck with it and have seen the results. Good job on that!

  14. says

    kelly, all of you, are so brave! i have been truly in awe of your little family. and mostly in awe of you and andy. i love you guys.

  15. says

    There is absolutely nothing like the love of parents with their conviction and determination that there has to be a full meaningful life for their child. Reading your story and Ashley’s story in detail like this is phenomenal. Like others have said, I can never get enough of these stories. They always fill me with such joy, but to hear your story with Ashley moves me so much, Kelly. My heart goes out to you and I applaud you for everything and celebrate your success. I hope with all my heart that Ashley will continue to improve and delight us all. I always loves seeing her and hearing her in your photos and videos!

    Much love,
    Shirley

  16. says

    Thank you so much for sharing this! I find it so amazing how much can be done through nutrition. Reading this, only reinforces my desire to become holistic nutrition.

    I’ve also been giving my son some omega supplements, along with monitoring his diet. About a year an a half ago, I really thought he had ADHD, and a lot of those symptoms have dissapeared or diminished. After reading your post, now I’m convinced I really NEED to see a ND to adress the last few symptoms.

    Thank you for sharing Kelly!

    Stephanie

  17. Jennifer R. says

    Thank you, thank you, thank you for sharing Ashley’s story. Wow! You have been through so much and what a great mother you are. Like you, I will do whatever it takes to get my kids well, even if it does take some time. Hang in there and keep plugging along. Do update us in the future with how she is doing. :)
    Hugs,
    Jennifer R.

  18. says

    Thank you, thank you! For those of us living it day-to-day … the loving and caring for a child with a neurological disorder … SHARING helps. No one has to be alone in this. Everything shapes us. My heart is with each mommy who celebrates the first word at 4,5 or 6 or a week of normal stools! It’s the little victories and in it the lesson to take life one day at time. Kelly, thanks for being a great mom and for all you do to inspire others to keep on keeping on.

  19. says

    Such an amazing story–and so glad to hear about Ashley’s recovery! I totally believe it’s possible that all her autism symptoms will disappear one day, especially since you began treatment so quickly. It just astounds me that allopathic doctors can continue to say that (a) vaccines are harmless and (b) holistic treatments don’t work (because they haven’t undergone huge, corporation-financed, double-blind studies). Grrr! Your daughter is living proof of what good, healthy food, a healthy environment and a loving family can do. Congratulations. :)

  20. says

    Thank you do much for posting this.

    I have been pondering testing and chelation. I’m going to ask the integrative guy we’re seeing. He has her on several supplements and I’m ding a GFCF diet, but I am struggling a bit with it. My goal is to be very consistent with it (consistency being a very hard thing for me).

    My daughter did not have a lot of delays, but had extreme sleep issues, stimming and sensory issues (sound sensitivity). And worst of all…seizures. She had her first last year in October (as far as we know). It has been the single most horrible experience of my life.

    Because we could not get her seizures to stop naturally she is on medication (temporarily). We really want her to get off of the medication as I worry what it’s doing to her, but currently it’s too dangerous for her to be off of it, even according to the naturopath/integrative professional.

    I applaud you and thank you for the info. It is not easy to deal with.

  21. says

    Hi Kelly,
    Thank you so much for sharing your story. I have an 18 month old son who is severely effected by eczema and more allergies than we can count. When he was born he was a perfectly porcelain skinned, healthy baby and 2 days after he had is vaccines at 2 months old he broke out in the worst eczema and has been miserable ever since. I have started him on Biocidin and he has gone from bad to worse. He is just inconsolable :( I am worried that I am doing more harm than good. I did read up on the ingredients and learned that tea tree oil i s toxic if ingested and that is one of the ingredients in Biocidin. Could he be going thru detox. Did you have an experience lie this? Please let e know your opinion on this.
    Jamie.

  22. says

    I want to thank everyone for your comments and for sharing with me :-) I’m sending you all my love.

    Jamie, I don’t have personal experience with that, but I have heard of lots of other similar stories. Are you with a really great DAN! doctor, naturopathic doctor or nutritionist? What are their thoughts? Praying for you and your family.

  23. says

    We have a Naturopath and see a great chiro regularly, but they have never heard of Biocidin. They are kind of following my lead at this point and I feel kind of using us as guinea pigs.

  24. says

    Thank you for your prayers btw. We are doing the same for you and the other families out there struggling for answers and healing.

    God Bless,
    Jamie

  25. says

    First, congrats on the new family addition!

    I’ve been following your blog and tweets for a couple months now, and I have a new and elevated level of respect for you and for your resolve after reading this post.

    We have walked a somewhat similar path as you. Our son has experienced some developmental challenges resulting from a traumatic birth (full-term asphyxia) and we’ve seen miraculous results from a combination of aggressive therapies and dietary changes. What you have done and what you are doing gives others the tools, the hope, and the encouragement that is needed during those times when it feels easier to give up than to move forward.

    You and your family are a great example of making GREAT lemonade from your lemons.

    Best wishes!

  26. Anonymous says

    Our household is in the process of eliminating grains and sugar. I’m finding your site to be very helpful. Thank you. I realize your family is involved with a wide range of health and wellness care, but I’d just like to ask if you’re aware of or have ever been tested for pyroluria. My son was recently diagnosed with pyroluria, and treating it appropriately can be totally life changing. Basically, pyroluria is the result of a flaw in the way a body synthesizes hemoglobin that over time causes the individual to become deficient in both vitamin B6 and zinc. Being deficient in those areas causes serious problems. I first became aware of pyroluria when I read Joan Mathews Larson’s book, Depression Free Naturally. Dr. Larson operates the Natural Recovery Center in Minneapolis, Minnesota. Her books as well as her center have truly been a blessing for my family.

  27. Anna says

    You have amazing recipes! I just wanted to say we have been traveling a similar path. What has made a world of difference for us is homeopathy. We have a homeopath whom we love and use for all complaints. I can not tell you what I have seen homeopathy do…the list is to long. My son just took carcinosin and he went from sullen/moody child to happy engaging, sweet boy. coffea cruda, nux, arg nit, love the remedies. Ferr to help absorb iron. Zincum metalicum to absorb zinc and so many for exzema to asthma. Just AMAZINg. Diet is huge but an energetic shift makes the healing complete. THe key – finding an AMAZING homeopath. OUrs is Kate Birch out of Minneapolis.

  28. Cherie says

    Thank you for sharing your story.
    I also have a child on the Autism Spectrum.
    Hugs <3

    Is it possible to have your cookbooks sent to Australia?
    I fear the shipping would be abominable.

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