|BTVC Autism Chapter||Counselors "SCD Solutions"||Elaine’s Story||Top 10 FAQs||Food Preparation||Goat Yogurt|
|Holiday Ideas||Local & Online Support||Overcoming Difficulties||Parents' Reports||Probiotics||Recipes|
|Research||SCD Links||SCD Science||Search Pecanbread||Seizures||Supplements|
Isaiah is a 12 year old boy with regressive Autism, having been born perfectly normal, and actually progressed ahead of schedule until a series of ear infections, oral antibiotics, immunizations, and an exposure to the wild virus strain of chicken pox caused Isaiah to suffer a loss of language, eye contact, joint attention, behavioral self-modulation, and a general ability to verbally communicate his needs, problems, and pain. He developed a severe and persistent gastrointestinal overgrowth of yeast, alternating constipation and diarrhea, food allergies, seasonal allergies, Autistic Enterocolitis, and lymphoid hyperplasia, that can be so painfully debilitating that it causes him to cry and scream, try to find physically comfortable positions, and miss many days of school.
Isaiah has been maintained on a strict casein and gluten free diet for the past 6 years, with variable and minor improvement. He continued to battle chronic yeast overgrowth, clostridia, and alternating diarrhea and constipation, abdominal pain, gas, bloating, and failed to progress in terms of acquisition of social and language skills, to the degree it seemed he should. His tantruming, mood changes, and behavioral outbursts, in retrospect, were essentially all related to his state of bowel function and discomfort.
In a practice of treating well over 100 children with diagnoses of Autism Spectrum Disorders, I must say that despite rigorous implementation of the casein free and gluten free diet (or free from any identified IgG allergens), as well as informed supplementation, I have not seen children improve to the extent and in the fashion in which one would anticipate. These children cannot implant normal flora, eradicate clostridia or yeast. We see continuing deficiencies in nutrients, fatty acids, and amino acids, as well as on-going bowel problems, again, despite nearly heroic interventions to correct these problems, and heal the gut.
Since starting the Specific Carbohydrate Diet 6 months ago, Isaiah has demonstrated impressive progress. He has had a normal stool every day since the 3rd day on the diet. On the one occasion that he was exposed to birthday cake and ice cream, he developed diarrhea for two days, and cried for the entire time. When he resumed the SCD, the diarrhea and crying stopped, and have not returned.
Not only does Isaiah have a normal, formed stool each day, he has made significant rapid progress in developing considerably more language, and utilizing much more complex sentence structure, appropriate pronouns, and spontaneous conversation. He has developed an interest in football, forsaking more juvenile interests, such as Thomas the Tank Engine.
He is now included for the full day in a sixth grade classroom, with supports, and in fact, he has become a champion speller. Last year, he spent 50% of his school time , alone with an individual teacher, because he could not stay in the classroom without crying, performing almost constant obsessive-compulsive routines and rituals, and being totally distracted.
He missed over 50 days of school last year due to severe abdominal pain, crying, pacing, and screaming. Learning is difficult, at best, under thosecircumstances.
Other treatments have been helpful, such as oral immunoglobulin, B12 injections, complex supplementation, which were thoughtfully and knowledgably implemented by Jaquelyn McCandless MD, as well as social and educational supports implemented by a very supportive Special Needs Director, Ralph W.Tripp III, but nothing has brought my child so far, so fast as the SCD.
Although many things seemed to help him over the years, Isaiah was still so variable from day to day, that we had no real idea of what was working, and what wasn't.
Now, he wakes up happy each day, ready to go to school, and his mood remains stable throughout the day. His mood is so consistent now, we know immediately if something is wrong with him. As I mentioned, he is able to participate in classroom activities daily, and even though the school year has just begun, all indications are that this will be a much smoother and productive. Also of note is the fact that his sense of humor has blossomed; something that apparently is also difficult when one is in pain and struggling with gas, bloating, and knife-like stabbing sensations.
When Isaiah was exposed to one teaspoon of homemade goat's milk yogurt, he reacted in a very negative fashion. He cried for a day and a half and was totally miserable, and had loose bowels for two days. This may have been because he was not following the SCD long enough for GI healing to have taken place. The other possibility is that when Isaiah was exposed to the cake and ice cream, we should have started from square one. The lesson in this experience however, probably is that children with ASD should take their time and not start the casein exposure prematurely, or parents may come to the erroneous conclusion that the "diet does not work." If the gut is not adequately healed, children on the Autism spectrum may have problems adding in the yogurt.
Elaine Gottschall continues to make major contributions to the health and well-being of people; this time by introducing the SCD to the ASD community.
This may well be the missing link for the many children, and perhaps adults, who have not adequately responded to the casein free and gluten free diet, and vigorous and informed supplementation. It seems to be having a very beneficial effect on Isaiah, and hopefully, will have the same effect of healing the gut, relieving the pain, and maximizing the developmental potential of children with ASD.
Christmas Update: We had the best holiday of our lives. For the first time, we were able to go to family parties with Isaiah calm and happy! In the past, this was impossible, as he was reticent to attend, and would scream and cry if we did attempt to include him. This was probably due to sensory integration problems, overstimulation, anxiety, pain, change of routine, and many variables. This was always a difficult time for my family since we are all very social people.
Isaiah and I would need to stay home alone during the holidays, or leave a party after a very short time. This was at least as difficult for my older son, who enjoyed the parties immensely, as he either had to leave early or stay there with only his father, but without Isaiah and I. This created alot of distress for the family, and alot of turmoil for me, in particular, having to miss alot of holiday time with my older boy.
This year, however, was quite the opposite. Isaiah joyfully attended a round of parties, and brought his own delicious SCD food. Things that would have previously sent him into a house-shaking tantrum no longer bothered him.
Noises, lights, new people, different routines were not at all difficult for him.
He still set limits on how many parties he was willing to attend, but we were able to fully participate in all the important family events of Christmas and New Year. Quite the change!
Isaiah's ability to benefit from the academic and social environment in middle school has improved immeasurably. He actually requested to transition to middle school, despite our attempts to keep him in elementary school. We thought he needed to stay with the "little kids in a safer environment", but he would have none of it. He is doing very well in school, and no longer spends any time in the "sick room" with abdominal pain and screaming.
Although it takes a tremendous amount of time and commitment to be fully SCD compliant, for the forat time I feel good about the food that I am giving my family. Not only has Isaiah benefited from SCD, but so has my typically developing 15 year old son, Marcus, as have I. Isaiah can now tolerate butter used in cooking SCD cookies, crackers, and cakes. Right after the holidays, we will again attempt the goat's milk yogurt.
We have also implemented the SCD as the diet of choice for the children in our practice, and we have observed many positive effects. I am sure as we come to understand more about the individual metabolic issues of people on the Autism Spectrum, and more about the workings of the SCD, even greater benefit will be derived.
With love, respect, and gratitude,
Pamela J. Ferro
From Niko's mom, asd 5, SCD 11 weeks
Oct. 14, 2003
"I can't describe you how I felt when my son said, "Sorry mama", when he jumped on sofa and hit me unintentionally, how he waves me when I leave for office, how he attaches his car belt when he jumps on car seat, how much empathetic he is to his school mates and how many friendships has he developed!"
Oct. 14, 2003
"He (my son) was constantly searching for food and was very miserable. Since SCDiet he is calm, happy, quiet, not searching for food and not nearly as hungry. He is very different."
Oct. 14, 2003
"He (son) went through an episode yesterday where his cheeks were red and he was running around. It lasted about 45 minutes and he emerged "clearer" with lots of spontaneous relevant language. BTW- can't help but adding that the night before I put him to bed and he was crying. When I asked him why he was crying, he said, "Want to come down. Want to see mommy!!" Then I was the one crying!!!"
Oct. 13, 2003
"Today, I took my four year old ASD son with me to work. He not only greeted my co-workers happily, he initiated a game of hide-and-seek with one of my fellow teachers that he has never met. This is opposed to hiding behind me, head down, repeating "no,no" - pre-SCD. Yesterday, my mother asked my four year old ASD son if he wanted to go to the grocery store. She didn't really expect an answer. My son turned to her and say, "No, but maybe later." It came out "maybe waiter", but that just made her smile even bigger. It's really a trip having actual conversational style interactions with him - thank you SCD!"
From Sue, whose child had been on SCD only 5 days
Oct. 13, 2003
"His eye contact seemed improved yesterday and this morning. He blew me kisses this morning and he hasn't done that for about 18 months. I actually cried. I 'tripped' over this website by accident and really believe that it was my prayer being answered."
From Melanie, Mom of Max age 4, pddnos--SCD 3+ months
Oct. 13, 2003
We are batting 1,000 these days: he ate a couple of chicken nuggets this weekend ("breaded" with pecan flour) and dipped them in my homemade ketchup that he previously found inedible.
From Sherry, mom of Jamie age 14
Oct. 11, 2003
Jamie played with a doll for the first time ever today. I almost fainted.
From Libby, Mom of daughter age 2 LNH of the ileum and colon - global dev delay
Oct. 10, 2003
My 26 month old has started potty-training herself. She is non-verbal but has some sign language. The number of signs she uses has doubled since adding yogurt (2+ weeks ago) and tripled in general since starting SCD. She has gained weight for the first time since February and is now on the weight charts again for her age. She is interested in eating. Previously we had to force food on her. She no longer head bangs in her highchair or fights when we put her in (she even tries to climb in sometimes!).
From Edith, mom of 6 year old boy
Oct. 10, 2003
Behavior and language has improved a lot. I know the healing takes time....I see his receptive language increased, more little spontanious words but not much conversation yet.
From Angie, mom of Morgan age 6 (pdd and getting more typical daily), Dillon age 4(was severe SI, and dyspaxia of speech, but it doesn't exist anymore) and Amberly age 2, SCD 3 months
Oct. 7 & 10, 2003
The positive results we have seen are so outstanding, So much more social behavior , more communication, and just all around happy kids, and that makes Mom happy also. Their guts are healing and they are digesting foods . and gaining weight. Morgan's teacher said she had a fabulous day , and was definitely on today , it is so nice to hear that. Dillon also had a perfect day , His teacher said he loves to sing , and is talking up a storm. Amberly the little one has said 3 new 2 word phrases today. Speech delayed , but talking more everyday.
From Deb, adult grandparent on SCD
Oct. 8, 2003
I started the SCD on July 31, 2003. By the 6th day my dizziness started to go away. By day 8, I was only dizzy in the morning and the confusion started to lift. By the 10th day, I was able to comprehend verbal language much better and to express myself verbally without having my thoughts fly out of my head in the middle of a sentence (which had been happening in nearly every conversation I had).
Oct. 7, 2003
My 4 year old is loving his bananas. He likes to hold the bananas by the peel and work his way down. We call this "eating like a monkey" to him. This morning, while getting his banana ready, I started peeling it for him. I guess he thought I was going to take it out of the peel and said to me, "I want to be monkey boy" and then started laughing. This was his way of telling me how he wanted to eat it. This was the first time he had made a joke and he actually knew it was funny!
From Niko's Mom, age 5
Oct. 1, 2003
We believe that SCD diet has brought a big change in his behaviour. He is completely different than before, learning a lot. The most amazing thing is that he has started playing with other kids. I think all the credit goes to SCD.
From Maddie, Mom of Sam age 7, HFA
Oct 1, 2003
I said lets try it (SCD) for 10 days and see if it makes a difference. We did it over winter break. Sam did not "recover" in 10 days. BUT... he is so much calmer, less irratable, and transitions better that after just 10 days my darling hubbie said "we can do this forever if it helps his attitude this much". We have had many new skills emerge this year and I attribute most of them to SCD.
Sept. 21, 2003
His eye contact is improved. He rides his bike more independantly. He can now wear a bike helmet. (Sensory problem with this previously) He actually looks at other children now to see what they are doing, previously no interest. He can imitate in a sort of Follow Me game. HE SLEEPS BY HIMSELF EVERYNIGHT! I thought I was going to have him in our bed until he was at least 10 and then Daddy was going to sleep with him. I have my bed back! I never though that would happen.
From Sandra, mom of Benji age 8 1/2
Sept. 21, 2003
He still has autism, but he does continue to make many improvements, between the SCD, homeopathy and his behavioural therapy program. Interestingly, the week we started SCD, his ability to do his Phys-Ed class improved enormously. He was suddenly understanding the rules to games better, running faster, throwing and catching the ball appropriately, when before that he would just walk around the perimeter of the gym and avoid the class as much as he could get away with it. Maybe he was in too much pain to be able to do it before.
From Kathy, mom of Anne age 7 1/2
Sept. 16, 2003
SCD is the best thing that has happened to us in a long time. Here is the really exciting news - after only 3 weeks of SCD- she's so much happier! I feel so hopeful that her gut is starting to heal and the sweet little girl I have seen glimpses of really exists. I am doing SCD with her and I feel so much better too! I have loads more energy and feel more positive than I have in a long time. I wish I had started this diet for her a long time ago but there's no use in regrets.
From Isaiah's mom, 12 year old boy with regressive Autism
Sept. 9, 2003
He wakes up happy each day, ready to go to school, and his mood remains stable throughout the day. He is able to participate in classroom activities daily. Also of his sense of humor has blossomed; something that apparently is also difficult when one is in pain and struggling with gas, bloating, and knife-like stabbing sensations. It (SCD)seems to be having a very beneficial effect on Isaiah, and hopefully, will have the same effect of healing the gut, relieving the pain, and maximizing the developmental potential of children with ASD.
From Alice, mom of Matthew age 12
Sept. 6, 2003
He is now USING his PECS symbols in exactly the way his therapist wants him to - pulling them out of his notebook and bringing them to me. He used to rely on taking us by the hand and dragging us around the house, which he still does a little but not nearly as much. I have a hard time telling him no to anything when he is asking me so nicely! Here is the MAJOR breakthrough - - he is GOING TO BED BY HIMSELF!!! Daddy takes him in the room (at eight thirty!) and tells him goodnight, go to sleep, and he STAYS IN THERE AND GOES TO SLEEP!!! We used to have to wait until he calmed down and passed out on the floor. He is getting heavier and I had images of me hoisting a twelve year old off the floor and into his bed! He had always at least needed someone to stay with him until he fell asleep, and at worst he wouldn't go to sleep and we would have to take him to bed with us once 10 or 11 came. Hurrah!
From Janet, mom of Austin age 11
August 18, 2003
He is very happy, and is always smiling a very big, normal smile. He is joking constantly with us, and making many more attempts to communicate verbally. He started school last week, and his teacher is amazed at the progress he has made over the summer in terms of independence and math skills.
From Sally, mom of daughter age 6 and has a PDD diagnosis and son age 4
August 8, 2003
We are seeing major leaps and bounds. She is improving everyday , She is getting ready to go to typical first grade yeah. She is actually being somewhat social. My son is 4 , and had alot of sensory issues that have pretty much vanished. I took him to school today for open house , ans his teachers were amazed at his progress over the summer , he was very talkative , So they immediately asked what type of diet we were doing, And of course I told them. The little one yesterday for the first time said to her speech therapist "I don't want to", and then last night she was sitting in my lap and was takeing my finger to point to objects like she has done in the past, But last night she started repeating what I was saying such as me saying apple , and she said "um apple". That is huge! This diet has given us so much , and it is easy to implement.
July 23, 2003
Is this possible? My husband and I have noticed an increase in social behavior with our son with autism. Lately he is following other kids on the block and responding to their verbal directions. When one boy went to go home for the evening my son held his hand and tried following him home. The other day he followed another boy across the street and stood by the front door turning the door knob. He's also lead both these boys by the hand to our trampoline out back. I also have a typical son who is the magnet that draws children to my home. Last night though he was sick with a fever. I was tending to him and left my ASD son in the yard. When I went to bring him in for the night I couldn't find him. Guess what ? He was out front joining in a game of frisbee with a father and his son. I told him it was time to come in which he did . When my back was turned I found him outside again sitting on my neighbors car. He jumped down and approached the father again and requested to play with the frisbee. The dad told him to throw it to his son David, which he did. My son did this several times. I'm delighted that he wants to do things with people.
I have had Asperger's Syndrome since age 1 (from DPT shot). I am a grandparent now...so I don't need to tell you how old I am.....anyway...I never had stomach issues, however I could not think straight, always confused, did not comprehend spoken language well, very clumsy, etc.......of course, back in those days nobody knew about autism...you were just called stubborn and a pain in the neck (!!!). So I grew up (all messed up) and made more mistakes in life than you can shake a stick at........and then I learned about autism and the SCD and other therapies. I started the SCD on July 31, 2003. By the 6th day my dizziness started to go away. By day 8 I was only dizzy in the morning and the confusion started to lift. By the 10th day, I was able to comprehend verbal language much better and to express myself verbally without having my thoughts fly out of my head in the middle of a sentence (which had been happening in nearly every conversation I had). So, in answer to the question about your 4-yr-old, in my opinion, even though there appear to be no stomach issues, the SCD will be a big help for recovery and development for your child. It's an easy diet, healthy and delicious, so why not give it a try....you may be pleasantly surprised by the results...it certainly won't hurt.
We have been SCD for 2 months , before we were gfcf for 3 years. For 1 year we were all raw vegan. Now we are SCD and loving every minute of it. The postitive gains are so encouraging . Every day my children are getting better , and better. My daughter Morgan who has a asd diagnosis , is doing great she is communicating more everyday , for example like where have you been Mom? and actually carrying on a conversation back and forth , And I am thrilled. I made a promise to myself last year that I didn't care what I had to do , that I was going to heal my children if It is the last thing that I do , And guess what it is happening . Elaine you are a god sent , and we love you for careing enough about our children , and bringing them back to us. Morgan is functioning beautifully in typical first grade , She is makeing friends , and socializing. She is even getting in trouble for talking in class. My son Dillon who had Dyspaxia of speech , and severe sesory integration , it is a day in our past , He is now talking up a storm , and is very active , not even the same kid. Amberly my 2 year old who is speech delayed is talking more and more everyday . The magic bullet is proper nutrition, that so many kids bodies are starving for. The goat yogurt has done wonders for us . I encourage everyone to try it , you may see some bad in the beginning but you will benefit so highly if you stick it out. I feel like for the second time in my life that I am truely blessed , and I am haveing the life that I was supposed to have . My life was perfect after my Daughter Morgan was born , She was so beautiful , ans innocent , until she received he MMR at 13 months , and then our nightmare bagan , all of her language stopped , and as time went on she was sinking into her own world. But now my beautiful little girl is coming back. I will keep everyone posted as progress is made.
From Alison Bucci
I am Mom to Peter, age 6, ASD/IBD. He went on the GF/CF diet 2 years ago with very good results both in stools and a lifting of "brain fog". A month later, the diarrhea returned so we eliminated corn, and the good stools returned. The next month it was soy and the diarrhea returned. And so on...
I read Breaking the Vicious Cycle about 3 months ago, and it made alot of sense to me. Obviously, carbs we're a problem for Peter. He was eating a TON of potatoes and rice (the addiction thing is always a red flag). Most importantly, SCD is a diet which has healed thousands of adults with IBD, and I felt that I had to do something about the GI issues before he developed full blown Crohns or Colitis or whatever. I was going for relief from the diarrhea and any improvement in the autism would be a bonus. Let's face it, Autistic children with chronic diarrhea or constipation have undiagnosed IBD. It made sense to me to try a diet which has worked for this condition.
Unfortunately, we couldn't do the intro diet because my son won't eat soup and I was not willing to introduce yogurt due to caesin. First we removed potatoes, rice, and sugar. I reworked recipes to use the almond flour and honey (the baking is a new learning curve for me ). I'm not sure if we're 100% legal due to the supplements which I haven't checked.
Our results have been great, and he will be on this for a long time. We immediately saw big improvements in eye contact, initiating language, and social engagement. No other intervention has helped in these areas. For the first month, his stools were horrible (yellow and loose), but this has resolved and we are back to good most of the time. I definitely think there was a die off of some of the critters and I am really glad we stuck with it.
Another thing to consider is that SCD is a healthier diet than GF/CF IMO. I was never comfortable with all that rice. Almond flour is very healthy. I plan on introducing the yogurt in a few months because I feel it will aid in the healing of his gut.
I am Jay, mom to 4.7 year old boy in the spectrum. I have been doing SCD (YES, with the yogurt) since April this year. Elaine was on the SCDlist at that time and she helped me a lot also. I proposed to start an SCDgroup for our kids at that time with the help of Elaine and Jen Young. But didn't think Jen was that interested and I didn't know any new SCD parent except some who had already been doing the diet. Anyway, I dropped the idea.
My son has tolerated the yogurt very well and we are vegetarians also and this had made it even tougher. I could isolate the REAL food allergies that my son had only on SCD. The very next day after starting SCD, my son became more alert and everybody could tell the difference. After 3 weeks on SCD, I also did the GSE/No Fenol combo and I don't know what helped more but my son's incredible eyecontact is back and here to stay. We did an OAT test after 4 weeks on SCD and saw that his clostridium level had gone from 8.5 to 4.2 , 0-0.9 being normal. Our DAN doc DR. Green was surprised to see the results and started giving me ideas on what culture I could use to make yogurt. He was the same person who freaked out when I first told him about yogurt. Also, when I brought SCD up on Phoenixkids (another group mostly talks about GFCF) not many were enthusiastic including Dr. Green who said what WILL you feed the kids. Anyway, it was nice to see that he was recommending this diet to his patients later.
From Jen Young
How can I find words to describe the miracle that is this diet? Following it has given me back my son in a way I never dreamed possible. Elaine's diet has cured my son's autism and his three year struggle with GI troubles.
My son Colin, age 4, has struggled with GI troubles since 11 months old. He had the ROTAvirus, chronic diarrhea,and was constantly on steroids (for asthma) and antibiotics (for ear and lung infections). By age two-and-a-half he was having night terrors every night. By age three, he was labeled "failure to thrive" due to his low weight and height.He was also diagnosed as having developmental delays (Pervasive Development Disorder, ie Autism). He was behind in speech and motor skills...he banged his head and stopped looking at me. My son slipped away from me!
Everyone had answers for us...the mainstream doctors (neurologists) wanted to give him drugs. The GI doctors thought Colin had "autistic" diarrhea and wouldn't help us. They wouldn't even do a colonoscopy on a child who had struggle with a GI disorder for years.
The alternative doctors told us to cut out gluten and milk and use high dosages of vitamins. Stopping gluten stopped his night terrors--but his chronic diarrhea and delays continued. In fact, as I became a "gluten-free" cook and branched out to new starches, Colin's symptoms got worse.
When my son was labeled as having "high functioning autism" at age 3 1/2, God told me to "put Colin first." So I quit my job to save my son. I decided that instead of listening to "experts" in autism, I would listen to my son. I knew he had answers inside him so I studied him.
I always knew Colin had a problem with food. His bizarre food cravings as a toddler-milk, cheese, and bread-had be