Patient Letters and Testimonials


letters

Letters from Parents

  • Letter from the mother of an adolescent with Asperger’s Syndrome
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  • “My son now has a future!”
more
  • Powerful Response to MethylAid
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  • Letter from Teacher to Mother of Autistic Boy
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  • Letter from Connor's (4 yoASD child) mother
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  • Letter from recovered ASD boy's mother
more
  • One down... a few thousand left to go!!! (converted mainstream pediatrician)
more
  • Letter to MSNBC from parent of a recovered Autistic Child
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  • Mother of recovered ASD child (Chelation Success)
more
  • J.K.'s child autism has improved
more
  • Article in the Palm Beach Post - Alexis Winter's Story
more
  • Dramatic response to Spironolactone in Autistic 7 yo boy
more
  • Recovered from Autism
more

Letters from Patients

  • Help for migraine headaches with Allergy Elimination Diet
more
  • Bodywork success
more
  • "a letter of thanks"
more
  • Bodywork for Fibromyalgia and Lupus
more
  • Comprehensive treatment approach for severe depression and IBS
more

 


Dear Dr. Levinson,

Our 31 month old son, S. was diagnosed with Autism at 24 months, in October 2006. I am a linguist and researcher by profession, and my husband's background is in psychology. We wasted no time veraciously reading every reputable medical document published both in the US and Europe regarding treatment for Autism.

I bluntly asked if you could cure our son. You assured me of his recovery and you were correct. Our son is living testament to the fact that a child can achieve outstanding improvement despite receiving a diagnosis of Autism. A world leading neurologist examined our son this week, and suggested removing his diagnosis by age 3.

At age 2, Sinon had no babbling and no speech, and appeared lost in his own world. He avoided direct eye contact. We switched to a GFCF immediately. Our family diet is vegan organic,since we have been practioners of yoga and meditation for over 20 years. Further restrictions challenged our diet in a positive way, promoting even healther eating habits that we now all benefit from.

Sinjon received over 11 treatments for IV chelation that drastically reduced his heavy metal toxicity. Sinjon still takes all prescribed supplements and daily epsom salt baths. We are still in the chelation process and intend to continue until his levels are within normal range.

He is gradually learning to speak and is a calm, happy delightful child and a pleasure to all who meet him. He is extremely social and affectionate.

I am so grateful that our extensive research directed us to Vitality Health and Wellness. Thank you Dr. Levinson, and all your wonderful staff!

C.H.
May 2007

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Dear Dr. Levinson,

I write to express my deep gratitude for all you have done for me.

For a long period of time, I had been from doctor to doctor, from treatment to treatment and from medication to medication. I had "Cat-scans", MRIs, hearing tests, neurological tests, allergy tests and many allergic reactions to various prescribed medicines.

You were "right on" with your diagnosis that the problem was food based, in placing me on an "elimination diet" and then following up with continueing dietary review and monitoring and a regimen of vitamins.

The improvement in my migraine headaches since we first started treatment last May has been startling. Suffice it to say, before you started treating me I was having regular significant migraines on an average of several times per week which interrupted my sleep and required me to take medication for same on a regular basis. My migraines are now infrequent, I do not have to take medicine on a regular basis and feel so much better. (Last migraine was over six months ago).

Again, thanks for all your wonderful efforts on my behalf.

Sincerely yours,

(initials withheld), attorney

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Dr Levinson,

Connor is now on the multi vitamin (5 days) and the cod liver oil(today). He has been doing great. He has been getting his Epsom salt baths as well. I cannot get over C's interactions with everyone now, especially his triplet sisters. It has brought tears to my eyes.

Thanks again for the great care you have given him.
KH

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Dear Dr. Levinson,

My husband and I both took days off from work to give J. a break from school and pressure during this "regression" or whatever this was during the week. He returned to himself - as you said he would …. As a quick note......I wanted to tell you how J. feels about all of this. Thursday night we just had a really great mother/son time with a long visit to the bookstore and a treat run to his health food store. Anyway, he was getting tucked into bed and telling me how much he loved me - I told you he was a smart child. Anyway, I was telling him that I knew he was feeling good and he was going to have more good days - mom kind of reassuring stuff. Anyway, he asked me a rather sad question out of the blue. He said, "Mom, do you remember when I would say that I couldn't do my life?" Let me tell you, Dr. Levinson, I remember those days in detail with J. in confusion, unable to shift his thinking, maybe striking out at us, rocking him in tears and him sobbing, "I can't do this life." That remark from a disoriented six and seven year old would keep us awake late at night worrying about the future for our youngest child. That remark took us to our knees. It makes me worried right now to think of those nights. Anyway, he asked me if I remember and I said that I did but things were so much better now. Then, I think to ask why he thought of that. My son told me Thursday night that he knew he was going to be able to do this life after all. He said, "I have a future, mom." I asked him then if his tummy felt better lately and he said, "Way Better." So, Dr. Levinson, my son now knows that he has a future and that even if there are more difficult times, he is strong enough now to still "handle his life."

Thanks, P.

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Hi Andrew and Staff,

T. is now on the Taurine (one cap), Cod Liver Oil (1tsp), and MethlyA
id (2 caps) (completely switched over from the DMG) and he is doing great. Everyone including his teachers have noticed more attention, more eye contact, more appropiate play, more words added to his vocabulary and less run around, crazy hyper time. He has also started to ask for more items and answer the occasional question. It is such a fantastic thing to watch. We also saw no negative side effects...

Thank you again for seeing our son and setting him on this amazing path.

-L.


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I just wanted share this with Dr. Levinson, because this progress has come about since A. has been under Dr. Levinson's care.

This e- mail is from his teacher. She did not see him from June 4th to August 21st. This is only his second week in school. She does not know of the new interventions that we have started since we began to see Dr. L on June 21st.

“A. is doing so much more - really enthusiastic about learning and participating all the time. He is so verbal with what is happening in the world - what effects him and others. So observant and interested. His responses are so appropriate - and often with a silliness added. Wonderful !

He got to be a leader today with songs - one of his favorite activities. We had extra music time with some of the students having a challenge day and effected us all. He was able to filter out what was not needed and maintain his focus on what was important to him. He wants to respond to answers and sometimes is so enthusiastic, he forgets others need a turn :) I'm not seeing as much of his twirling, either.”

Thanks to all of you!
H.K.

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We heard Dr. Levinson speak at U.C. Davis in June of 2005. I dragged my reluctant husband down there in the middle of the week and the rain.  Our son has Asperger’s Syndrome and we knew from a very young age he wasn’t the same as other kids.  He was hypersensitive to temperature, a little slow to talk and very clumsy. He had chronic sinus infections and ran very high fevers when ill. He didn’t do well in school but developed the verbal skills of a child 4 years older. He couldn’t sit still and in 3rd grade started to have night terrors.  

We took him to U.C. Davis and they diagnosed him with ADHD with an anxiety disorder and prescribed Ritalin.  The Ritalin caused him to be psychotic and suicidal. After that he required Benedril to sleep for 5 years. It had to be given at a specific time or he would awaken with nightmares.  He was on Zoloft and then they added Trileptal to control his mood.  He still was not doing well in school or socially.

We heard you speak and listened to “try the baths and diet for two weeks”. We went home and decided to start immediately.  We told our son we were doing an experiment for two weeks and bribed him. We didn’t want to go down the path of more drugs to cover symptoms.

 Within 3 weeks of going gluten/casein free and doing Epsom salt baths we took him off the Benedril and he had no more nightmares.  He is tall and thin but the “pot belly” went away very quickly. We started supplements, stayed on the diet and then started chelation. The results are astounding. Once he discovered that there were many things that he could eat and that he felt so much better he was ok with the diet.  As a freshman in high school he is in a regular classroom and he is learning to manage his anxiety, cook gluten free and be a regular kid. There are times he is made fun of and times he wishes he could eat “like everyone else” but at those times we remind him that this is saving his life and giving him mental and physical health.

 I believe with all my heart that Dr. Levinson has given my son an opportunity for a full, happy and productive life.  He knows how to buy, cook and order and eat out and still be gluten and casein free.  He went to Washington, D.C. for a week with his class last June and had a wonderful time.  We shipped snacks, he ordered his own food and he brought enzymes. He had a great time.

 For those parents that are afraid or minimize their children’s’ struggles, we say that although scary at first it is so worth the journey. Our son is loving, intelligent, happy and unique but for the world he is a normal teenager.  He has a full life of possibilities ahead for him and we attribute this to Dr. Levinson.  For parents wondering if it is too late, we say that you can do the diet, bath, supplement, and chelation with an older kid.  We started when our son was 13. Dr. Levinson also has a wonderful way of relating to our son that has helped support these changes.

We consider Dr. Levinson our son’s guardian angel and we are forever grateful to him and his loving staff.  

 Mr. and Mrs. D, Sacramento, California                                                
11/1/2006

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Dr. Levinson,

I would like to thank you again a billion times over from the bottom of my heart for helping us recover B. from Autism. There are NO words to describe that wonderful, most overwhelming feeling. ..... The day he was diagnosed, I vowed to defeat it and I would not allow that to happen to my son and daughter and all of mine, (my husband's) and YOUR hard work has paid off and it is truly, truly a most "freeing" and amazing miracle! I know we still have a long and possibly rocky road ahead of us with what ails him now, but my road is so much more comforted knowing you are there and we have fought a HUGE battle and won! I'm beyond grateful to you for helping me get my son back! I just wanted to thank you again and tell you I am truly beyond words at this moment and so ecstatic that I have a happy and normally developing boy!

S.S. (mother of a recovered child)

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Dr. Levinson,

I attended your " Yogic Neuromuscular Therapy" workshop at Omega in Rhinebeck, NY at the beginning of July with my son-in-law, P. I thoroughly enjoyed the weekend- very glad I decided to attend despite a disappointing workshop the year before. It was funny, informative, spiritual, and decidedly UN-mainstream--definitely memorable! I'm writing to give you some follow-up to a private session we had.

A few days later I flew to Orlando, along with my daughter and two of my grandsons, to visit my son. We spent the next 3 days doing ALL the parks-all 4 Disney parks in ONE day. It felt like the " Battan Death March" except that I survived it!

I'm absolutely convinced that I would never have made it- (we must have walked 300 miles) without that bodywork session with you. I've had countless aches and pains over the years, back-aches, fibromyalgia, etc.etc.--my back
had been in bad spasm for several days the previous weekend from carrying something the wrong way in a mall!
I still have "stuff", but I've added the technique you showed us as part of my "toolbox", and I really do feel better than I have in a long time! It's given me the energy I need to go ahead with several new things I was just
too tired for before. P. too, is happy with the results. He's still feeling much better, and it's timely for him because he just started a new, very challenging job.

So this is a long-winded "thank-youWe both feel that it would be worth flying to Miami every so often for a "tune-up". I'm sorry that you're based so far away because I'm also very interested in the healing powers of nutrition (al
therapy you offer). I've gone back to yoga as well after a 6-month "hiatus". The power of example....

Anyway, you are a gift to those who cross your path, and I thank you again.

Sincerely,
S.

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My boys had their well baby visit today with our local ped. Dr. K., (AKA Mr. "I do whatever the American Academy of Pediatrics says"), anyway, he actually told me that he did not think it was wise at this time to give J. his vaccinations because he now personally believes that ASD can be triggered by vaccinations in genetically susceptible individuals and he did not want to take the chance with J. Needless to say that my mouth hit the floor when he said that because he told me a year ago that he absolutely does not believe in any link between vaccinations and autism. He told me that the progress that A.'s progress has made him rethink his opinions. Anyway, I know you can more than anyone else in my life truly appreciate how tremendous this victory is===I just wanted to share it with you to say thanks for all you have done for us==== So on that note I will end this message...., I know you are pleased to have won over another ped in hopes that other children can be saved===hence, one pediatrician down, only a few thousand left to go!!!!!! J. (mother of a recovered child with Autism)

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Dear Dr. Levinson,

This testimonial is to express my deep admiration and respect I have for you and your professionalism. Since June, I discovered meditation and the power it has to heal. Recently, I have discovered the power of healing you provide through more conventional methods (at your clinic). This combination soothes both the soul and the mind.

It is uplifting in these times of stress and disorder.

I thank you.

Sat Nam

R.P. (yoga student and patient)

 

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Three years ago I experienced my first "bodywork" when I came to your center with a diagnosis of Lupus & secondary Fibromyalgia. My hands. Arms and legs were not functioning and I was living with tremendous pain. The bodywork with Dr. Amrit Singh (Andrew Levinson, MD)...changed my life tremendously in many ways. My experiences were deep and extremely powerful. I regained the use of my hands and arms and ... I remain to this day very moved and inspired by my experiences with Amrit Singh...

I am writing simply to express my gratitude and to let you know that the gift of healing that was shared with me in your office inspired me to change the course of my life and work. I work now as a Licensed Massage Therapist, Reiki practitioner and a teacher of therapeutic Qi Gong and Tai chi. There is a little bit of Amrit Singh ... in everything I do, so I just wanted to drop a little email to say THANKS ..(the) compassion and healing touch continues within me as marvelous gift that keeps on giving every day.

Sincerely,

S.P. (massage therapist)

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"For twenty-five years, I suffered from intestinal candidiasis, irritable bowel syndrome, depression, fatigue, muscular and joint pain, psychotic symptoms and phobias. In 1998, I met Andrew Levinson, M.D. and he treated me with alternative therapies. Today, I feel much better overall and for this reason, I'd like to express my deep appreciation for Dr. Levinson's medical and psychiatric interventions and especially for his hands-on healing power. He treated me with ... natural supplements, which made a big difference, since I am sensitive to conventional medications.

Initially, I received neuro-muscular massage therapy, which successfully eliminated my muscular and joint pain and also allowed me to release long hidden feelings and anxieties.

I (had) felt depressed and had recurrent suicidal thoughts for years. I tried different doctors' therapies with no therapeutic effect. I needed to take medications, having to switch from one to another often due to unwanted side effects. Now, those symptoms are under control. My treatment at Vitality Health & Wellness consisted of changing my lifestyle, a non-toxic diet and natural supplements. Dr. Levinson also guided me in the practice of Kundalini Yoga and on a spiritual path, making a significant difference and bringing meaning to my life. I feel a new connection with life.

I know that Vitality Health & Wellness was my best choice for treatment. It was like a bulb switched on and all my health problems vanished. I know in my heart that I will continue to do well if I adhere to my present treatment and lifestyle that Dr. Levinson had prescribed for me.

I wish to thank Dr. Levinson and his staff for their support and for the variety of alternative therapies offered."

N.F. (registered nurse)

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To Brian Williams (MSNBC):

My son was diagnosed with autism at age 28 months. The child neurologist said that the best we could hope for was "simple math" and the worst was that he would not live independantly. I chose not to accept that. After 2.5 years of working with a physician (Andrew Levinson, MD) who is part of the Defeat Autism Now movement, my beautiful little boy not only has recovered medically and behaviorally but is going to one of the most prestigious private schools in the southeast next year as a kindergarten student. As an educated parent (I have a doctorate), I knew that a child does not develop normally for a period of time and then regress without a definable cause. We found that cause with my son through the Defeat Autism Now Movement.

.... Every parent and child deserves to hear that autism is treatable, that it's roots have a biomedical basis, and that these children are physically ill with treatable conditions. Do your homework, look into this movement. Present the full story. To be able to pass on information that could help so many is so powerful, but to disregard it is unthinkable.

Thank you, J.A.

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"If I could give a parent of an Autistic child one piece of advice on what they could do to recover their child... I would tell her to get an appointment with Dr. Levinson. Really, I can not thank you enough."

HL (mother of Jonathan 7 yo recovered child)

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J.K. is a 4 y/o male that was diagnosed with Autism at 2 years of age. His early life was complicated with multiple ear infections, eczema and asthma. By 22 months he had lost eye contact with dilated pupils, would not respond to his name, insisted on having toys set up in a line, and walked on his toes. He would babble to himself but had no interactive speech. His diet consisted of macaroni & cheese, grilled cheese, pretzels, waffles and pancakes.

J.K. was first evaluated at Vitality Health and Wellness in September 2000. He was started on cod liver oil and High dose vitamin B6. Within 3 weeks, the patient began to talk in several word sentences, pupils would constrict within an hour of taking the cod liver oil, and eye contact began to normalize. The patient was diagnosed with having high levels of intestinal yeast and opiates were found in his body derived from wheat and dairy.

A complete casein and gluten free diet was started, as well as treatments to eliminate the yeast. Soon thereafter, his stools became normal, his speech increased to 7 word sentences, and his interactions with his family started to normalize. The patient was then started on DMG (a nutritional supplement) and his speech again improved, increased to 10 word sentences.... He readily demonstrates clear thought processes and expresses spontaneous ideas and plans.

In discussions with J.K.'s mother in January, 2001 she stated "It is amazing how change, coupled with the love we feel for our children and a systematic plan to follow can lead to such joy. There are no words to sufficiently express my gratitude to Vitality Health and Wellness."

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Families hope, critics scoff

by Stephanie Horvath

CONTROVERSIAL TREATMENT: Alexis Winter, 6, has received chelation at a Miami Beach clinic. Her parents have seen her improve, but others express doubt in the treatment. Photo: Steve MitchellCONTROVERSIAL TREATMENT: Alexis Winter, 6, has received chelation at a Miami Beach clinic. Her parents have seen her improve, but others express doubt in the treatment. Photo: Steve Mitchell

STRICT REGIMEN: Alexis takes 20 supplements a day and eats a wheat- and dairy-free diet. Twice a day her parents rub chelation cream into her hands and feet. She also sees a speech therapist.
SMALL MIRACLES: Alexis Winter's parents, Theresa and Robert, see a difference in their daughter from monthly chelation treatments. Her tantrums have ended, and she plays with other children. 'Before this it was like I had no child,' her father says, adding, 'Now I get my hugs and kisses.'

...

The number of children diagnosed with autism has risen dramatically. Some parents believe they have found a cure: Chelation.

Six-year-old Alexis Winter was mugging for a photographer in her living room on a recent Monday night when her mom, Theresa, made a request.

"Give Mommy a kiss," Theresa said.

Alexis tore her brown eyes, magnified behind her glasses, away from the camera and gave her mother a distracted peck on the mouth.

For most parents, that would be unremarkable, one of countless kisses from their child.

But for Robert and Theresa Winter of Boynton Beach it's a hard-won reward.

Six months ago Alexis, who is autistic, never hugged or kissed them.

"Her demeanor has changed," Robert Winter said. "She'll run and jump in your arms now. We're teaching her to kiss now."

Autism, a developmental disorder that affects a child's communication and social interaction, afflicts an astounding one out of 166 children in the U.S., according to the Centers for Disease Control and Prevention in Atlanta.

People with autism are usually withdrawn, sometimes speaking very little, avoiding eye contact and struggling to form personal relationships and show affection.

There is no known cure.

But as the number of children diagnosed with autism increases, the search for a cure has become more pressing. The CDC reported in the late 1980s that just one in 2,500 children had autism. Now, among developmental disorders, autism is second only to mental retardation based on the number of children who have it - making it one of the fastest-growing areas of health care among children.

All of that is lost on parents like the Winters. They care only that Alexis now makes eye contact and focuses better. She has stopped having violent tantrums and spinning incessantly. They attribute her progress to a series of biomedical treatments provided by a Miami Beach doctor, including a wheat-free, dairy-free diet and high doses of vitamin supplements. But they give the most credit to a controversial treatment called chelation that strips heavy metals out of the body.

Despite a lack of research, many parents of autistic kids are trying out chelation. The chelation drugs can be given as a pill, cream, shot or intravenous infusion. No one tracks the number of autistic children receiving the treatment, but Dr. Andrew Levinson - Alexis' doctor and the only one in South Florida offering chelation therapy - said he's treated more than 1,000 autistic children over the last five years at his Miami Beach clinic, about 350 of them from Palm Beach County.

Not all the children did chelation therapy, but Levinson said he's seen the treatment work enough times to make him think it's a cure for some.

"That's not everybody's story," Levinson said. "But reversing autism is possible."

To be sure, Levinson's opinion is not consensus. Many doctors are dubious about chelation because it's not backed by scientific research and can cause liver and bone marrow damage because it strips minerals like zinc and iron from the body. And because chelation is expensive and not covered by health insurance, they also worry that people offering it are taking advantage of families seeking a cure. The Winters pay $200 for each 30-minute session with Levinson, who gives intravenous chelation drugs to their daughter once a month. (error in article - the price included her infusion).

But they're willing to take on the risks and financial burden.

"If it's going to make our child better, we'll explore every option," Robert Winter said. "My daughter, since we started, has made progress. That's proof in the pudding right there."

Old treatment, new use

Chelation has been around for decades, used to strip metals out of the victims of industrial accidents or environmental exposure. But the treatment has never been tested specifically for autism, and the evidence supporting it is anecdotal. It began being used by people who thought that mercury in children's vaccines caused autism. An Institute of Medicine report released last year found no link between autism and the vaccines.

Some researchers have examined the mercury levels in autistic children.

A recent University of Arkansas study suggests that autistic children might not be capable of detoxifying themselves, finding that they had significantly lower levels of glutathione, a chemical produced by the body's cells that neutralizes toxic heavy metals.

Yet another study - conducted by Jim Adams, an engineering professor specializing in heavy metal toxicity at Arizona State University in Tempe - found that autistic children secreted three times more mercury than healthy children after being given a chelating drug. Adams, whose 13-year-old daughter has autism, is now seeking permission to start a clinical trial that would test whether chelation actually helps lessen autistic behaviors.

"I get contacted by mainstream physicians regularly, asking what we're doing now" Levinson said. "It's kind of hard to argue with results."

Still, many doctors and autism experts aren't convinced that chelation works.

"There's no evidence that chelation to get rid of toxins makes any difference in children with autism," said Dr. Jeffrey Brosco, a developmental pediatrician at the University of Miami's Mailman Center for Child Development. "It certainly hasn't been tested to be safe."

Brosco, who develops treatment plans for autistic children, said families often ask him about chelation after reading on the Internet about other children's success stories. But he says the link between mercury and autism is weak, and if chelation really was a cure, more doctors would be jumping on board.

"The fact that people claim great success with chelation but haven't demonstrated it works for everyone makes me a little suspicious," Brosco said, "especially when families are asked to pay large sums for it."

"If I had a cure for autism, I'd be using it on every kid I see," he said.

There's been a significant increase in autistic children over the past 15 years, meaning more parents than ever are searching for an elusive cure.

Levinson said the increase could be due to higher levels of toxic metals in the environment. But Lee Marcus - the clinical director of the Chapel Hill, N.C., center of TEACCH, which instructs parents on methods for helping their autistic children - said the definition of autism is broader today, encompassing more children than before.

"I am diagnosing kids with autism that years ago we didn't," said Marcus, who's been working with autistic children for 30 years. "We're also doing it younger."

Long record of dashed hopes

Chelation isn't the first treatment declared to be a cure for autism by jubilant parents and doctors.

Seven years ago the cure was secretin, a pancreas-stimulating hormone that when injected into autistic kids seemed to help them communicate. But studies later determined the drug didn't improve autistic behaviors.

"If you track the history of autism treatment you will see this laundry list of any conceivable treatment. In the old days they were doing lobotomies," Marcus said. "These kids have been guinea pigs. Families want a normal child."

Normal is Robert Winter's hope for Alexis.

"We're not going to be around forever, and I don't want to have to institutionalize her. I want her to live a normal life like a normal person," he said while sitting with his wife in the family's Boynton Beach living room. "We have hope. We've seen other children respond to it, 100 percent cured. That's what I'm rooting for with my daughter."

Alexis' autism is complicated by the fact that she was born deaf.

When she started exhibiting strange behaviors - spinning, staring at lights for hours and banging her limbs and head as if she didn't feel any pain - doctors told her parents that was the way deaf children stimulated themselves.

When she was 2 1/2 she received an ear implant that gave her 80 percent hearing, but the odd behavior continued.

"She'd stand in the kitchen and stare at the lights and just spin," her father said.

Finally a doctor at St. Mary's Medical Center in West Palm Beach diagnosed Alexis with autism when she was 4. She started attending what was then St. Mary's Preschool for Children With Autism. It was there, at a lunch-hour meeting, that Theresa Winter met the parents of a little boy who had exhibited many of the same behaviors as Alexis. They said their son had been cured by chelation.

"He shared a video where (his son) would spin around and fall down and get back up again," Theresa Winter said. "I just sat there and I cried. I said, 'That's Alexis.' "

The family directed the Winters to Levinson's clinic, and over the next two years Alexis began treatments including high doses of supplements, a wheat-free and dairy-free diet and chelation.

Gradually Alexis became more affectionate, and her attention span grew, Levinson said. The tantrums ceased. She played with other children and began speaking and using sign language. She still spins, but only when she's dancing to her mother's Yanni CDs.

Levinson said that when Alexis arrived at his office she was severely autistic; now, he said, she's mildly autistic and still has problems speaking, though he can't say whether that's because of autism or her deafness.

"I forgot how much of a success story she was," he said while reviewing her file recently. "She's made a vast, vast improvement."

To her parents, the change is remarkable.

"Before this it was like I had no child," Robert Winter said. "A vegetable, almost. Just staring off into space. Now I get my hugs and kisses and my, 'Hi Dada's' and, 'Hi Momma's.' "

Alexis still has far to go. She's learning sign language from her mother, who takes classes at a local school. She struggles to speak, emitting syllables from her barely open mouth that only her parents can understand. Though she is 6 years old, her father estimates that Alexis has the mentality of a 4-year-old and the speech of a 2-year-old.

"Thursday night we got our first sentence," her mother said recently. "She said, 'I want juice.' No sign language."

Alexis takes 20 supplements a day mixed into cups of applesauce. She eats a diet free of wheat and dairy products, with wheat-free bread that costs $4 a loaf. Every morning and evening her parents rub a chelation cream with a strong chemical odor into her hands and feet, and once a month she travels to Levinson's office in Miami Beach to receive the intravenous chelation drugs. She also goes to school at Manatee Elementary in Lake Worth, sees a speech therapist and will start behavioral therapy soon.

The Winters estimate they spend about $3,000 a month on things related to Alexis' autism, but no one tracks how much money families like the Winters spend annually on autism therapies and treatments. Dr. Scott Grosse, a senior health economist at the CDC, said recent estimates from studies of the financial impact autistic children have on Medicaid and private insurance suggest that their medical costs are five to 10 times greater than those of healthy children.

Robert, a salesman at Mayors Jewelers, and Theresa, an office worker, say they live paycheck to paycheck. Alexis has been rejected by Medicaid, and they are setting up a tax-deductible fund for her and seeking out grants and scholarships.

"I already borrowed from family," her father said. "I borrowed from banks, and I cleared out my 401(k) plan. It's rough."

A warning from parents

Though most parents consider chelation and special diets, some worry that the procedures are too intense or don't have scientific backing. Those that try it don't always see impressive results.

Shelly Hedge of Jupiter tried chelation, a wheat-free, dairy-free diet and vitamin supplements with her autistic son, Collin, a 9-year-old with a sprinkling of freckles on his nose who speaks two- and three-word phrases. While she keeps Collin on the diet most of the time - eating wheat makes him irritable - Hedge stopped the chelation and the supplements when she didn't see a significant improvement.

"For a little while there we did so many different medical things I felt like he was a guinea pig," she said.

Brosco, the University of Miami doctor, said parents shouldn't forgo behavioral therapies for unresearched treatments.

"There's very good evidence that the appropriate kind of behavior interventions make a difference," he said. "It's a much more powerful and direct approach than pursuing a magic cure."

But when parents learn their child is autistic, Hedge said, they often are compelled to look for that quick fix.

Sonia Kay, the educational director of the Renaissance School, a Palm Beach Gardens charter school for autistic children, said, "The parents are desperate for any kind of help." Kay said she doesn't think there is a cure for autism but that many autistic children grow up and learn to cope in the world.

"But there's something about autism that doesn't go away. . . . We all meet people in this world who are a little different," Kay said, including people who communicate and relate differently. "Those kinds of things can remain. It doesn't mean they can't be happy, productive adults."

Newspaper: Palm Beach Post

Copyright: Palm Beach Post

Published: 1 May 2005

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Dramatic response to Spironolactone in Autistic 7 yo boy

Dear Andrew,

I couldn't wait until our next appointment to tell you the amazing change we have seen in Billy since starting the Spronolactone. It has had the most dramatic effect yet. His teachers at school have wondered what has brought about the dramatic change in his focus in seat behavior and eye contact. Bill is responding to questions, expressing his wants, and has more intrest in being around other kids. He is pulling my face into his and trying to express himself while looking into my eyes. Yesterday he rode on the back of his brother's bike around the neighborhood with a big smile on his face. This mourning on the way to school he requested song #4 on a CD and answered a qestuion regarding his favorite TV show. WOW!

Thanks for sticking with us!

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