let's share info (and some hope!)

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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let's share info (and some hope!)

Postby chilliwackmom » Sat May 14, 2005 1:24 pm

I was thinking, as the parent of an older child, who's considered, at this point, I believe to be somewhere around the middle of functioning level, I don't know how much is reasonable to expect from the biomedical treatments. I watch the videos and read the testimonies, and it seems the children who make such huge gains with these treatments are either very young when they receive their first interventions, or are higher-functioning kids.

I was wondering if we could start a thread, where we describe our child's global functioning and specific symptoms, along with their age, and describe what changes we've seen with what interventions. I'm sure there's plenty of parents on here with children with a wide range of symptoms and abilities, who've experienced positive growth in many areas. I thought maybe it would give everyone some hope to know that every child can heal to some extent or another.

Anybody interested in spilling about their child's successes?

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Postby chilliwackmom » Sat May 14, 2005 2:03 pm

I'll go first:

D is an eight year old boy, diagnosed as autistic. He was diagnosed shortly before his sixth birthday. If he'd been in a decent home, he no doubt would have been diagnosed and received intervention much sooner. He has a brother on the spectrum also. I don't know if D was typical at birth or not, or when his symptoms first appeared.

D's biggest struggle is with communication. His receptive language is fairly strong, probably at about a 42 month level. His expressive language varies in ability; his speech is mostly comprised of delayed echolalia, which is seldom used in context. If you go to http://groups.msn.com/TheAutismHomePage/echolaliafacts.msnw, and look at Table 2, under category A D does 1, 2, 4, 5, 7, and 8. From B, he does 1, 2, and 4.

D talks CONSTANTLY, but it's all just recited script from TV shows, movies, and computer games - he is unable to get the simplest message accross, such as "I need to use the bathroom", "my tummy hurts", "I'm thirsty/hungry". It goes beyond speech, he is at this point unable to express his needs and wants spontaneously even through pecs or signing. With a prompt however, you can get independent speech out of him. For example, if I say "what did you have for supper yesterday", he will tell me. Or if I ask "where did you and ____ go, what did you do?" he will answer correctly more often than not. D can answer questions related to colors, spelling, names, etc., but abstract things elude him.

D does a tremendous amount of verbal stimming, which has worsened since he started Ritalin. "New word!" (said in an exasperated voice) has become a very, very common saying around here.

D's currently making tremendous leaps in the area of language, and is crossing from "gestalt" type language to analytical language http://groups.msn.com/TheAutismHomePage/echolaliafacts.msnw. He's beginning to make verbal requests, although generally needs the prompt of "what do you need?" "which one?". He'll answer appropriately maybe a third of the time now, the rest of the time we just get a meaningful stare or an immediate echo. D does use his delayed echolalia just as a social exchange/interaction - he's extremely social, just doesn't have the conversation skills. He will run up to me and say a word, and wait for me to repeat it. If I don't, he'll repeat himself, getting eye contact. As soon as I repeat it, he'll say another word. He loves when I ask him to spell stuff, or ask other questions he can answer. He wants so badly to talk with me :( :)

D's other symptoms are toe walking, difficulty with transitions, gets overstimulated in certain situations, or when he gets new exciting things, sensory issues (proprioceptive, hyposensitive), obsessive (gets fixated on some things which then have to be discontinued), some visual stimming or auditory stimming, occasional flapping, poor social skills, isolated in play much of the time, very hyperactive, etc. He has allergies and a cruddy immune system. His diet is pretty limited (self imposed), but expanding.

We took D off of Risperdal and saw a lot of positive changes, although an increase in sensory issues, hyperactivity, aggression, etc, as well as he became frustrated super easily and was tantruming. He's now on Ritalin, which seems to slow him down just enough to be manageable.

The biomedical stuff we're doing so far is enzymes, probiotics, magnesium/calcium, GSE, a good multivitamin, methionine, and the epsom salt cream. Will be giving zinc in near future. Am considering chelating, and/or MB12.

Changes we've seen due to the bio med stuff - D seems happier. WAY more language growth, it's incredible. Much more "connected". Better receptive language. Willing to try more foods. His need for proprioceptive input is slightly decreased. His need for oral and tactile input is increased, at least so far. He looks healthier, although I can't put my finger on why. We're pretty happy :)

In the two years D's been in our home, he's been receiving PT/OT once a month, he got maybe 8 speech and language sessions, he did therapeutic horseback riding once a week, and hubby and I build behavioral modification, OT, PT, and sensory strategies into our home routine. At school, D has a one-to-one aide, and is in a regular classroom, working on an IEP. Both school and home used reward-based systems, token charts, etc, and clear consistent consequences for poor behavior. Prior to living with us, D had no significant intervention. He'd made tremendous gains already in our home before we started the biomed stuff. When he moved in, he had no speech, no eye contact, no communication attempts, answered questions either by echoing (yes) or screaming (no). We've come a LONG way!!!

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Postby rlneub » Sat May 14, 2005 5:20 pm

Just as a comment, we have had 8 year old low functioning come off the spectrum in 2.5 years on mb12 plus other biomed treatments. It is not too late!

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What do I think works?

Postby debstake » Sat May 14, 2005 6:58 pm

Jr is 7.5 years old and when diagnosed was described as moderately autistic. After doing some research of my own I came to realize that those who diagnosed him as moderately effected were just trying to “soften the blow” so to speak. Jr was actually closer to being severe. His reciprocal language was that of a 9 month old (remember he was 36 months at diagnosis). His expressive language was lagging behind even farther. He had no imitation skills at all nor did he play appropriatly with his toys. His ability to interact with peers was nonexistent. However, his cognitive processing has always remained in tact. He has from very little been able to figure out complex things. For example if there was something he wanted and couldn’t reach, he would figure out a way to build a “ladder or bridge” to get to what he wanted. When we discovered this ability we knew we had to do whatever it takes to heal him.

The thing with biomedical supplements such as vitamins, minerals, anti-oxidants, amino acids and the like is you don’t always see the improvements on the outside and very seldom are they immediate. When we first started JR on supplements almost 4 years ago (he took a self imposed break from them for about a year) we started with the standard Super-Nu-Thera and even though I saw things improve they were not as obvious to someone who isn’t around JR as often as we are. Even Rodney (Jr’s daddy) was expecting some kind of “miracle” from these supplements. We then added omega 3’s (and his eye contact began to improve almost immediately). After reading and studying up on supplements we started to add the glutathione, taurine, glycine and finally the cysteine. Then the probiotics, the nystantin and the enzyme aids were added. And of course the MB12 shots have been the latest addition. The thing with all these supplements is the improvement is gradual and sometimes very subtle.

Educationally and behaviorally we use ABA/VB. We use PECS as the primary source of communication. His language skills are constantly improving as is his attention span and the behavior issues. He gets OT, PT and Speech as well.

If I had to put my finger on the one thing that has made the most difference I would have to say all of them really. You can’t address a child with autism using just one of these methods. They all need to be in place in order to reap the most from any single one of them. You need to implement both together in order to get the improvements we are all seeking.

Jr is thriving now and constantly moving forward. At a slower rate than the typical peers but forward is what we want. How long it takes doesn’t matter to us. To see him playing with peers and adults actually interacting with them warms my heart and makes me grateful to people like the researchers at Kirkmans, Dr. Dunkleberger and Dr Neubrander and his staff. 8)

Jr is now on the mild to moderate side of the spectrum. We are getting him back and as slow as it is, it's still progress and I will take it anytime.

The supplements do work and even if they don’t the potential side effects from supplements is virtually zero compared to prescription drugs that aren’t even approved for use in children.
Last edited by debstake on Sat May 14, 2005 10:28 pm, edited 2 times in total.
Be At Peace,
Deborah A Delp

Living With Autism in Central PA

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Postby Kristal » Sat May 14, 2005 9:56 pm

Hey chilliwackmom,

It sound like you adopted you son? Did you seek an autistic child, or did one fall in your lap. I would love to hear more about how you came to have him.


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For rick

Postby MOMMA3 » Sat May 14, 2005 9:59 pm

rlneub What does it mean when you say a child is off the spectrum and would the mb12 work on a 15 yr old?

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Postby rlneub » Sat May 14, 2005 10:03 pm

Off spectrum means they lose the Dx. After puberty it does work, just not as fast.

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Postby chilliwackmom » Sat May 14, 2005 11:00 pm

Kristal wrote:Hey chilliwackmom,

It sound like you adopted you son? Did you seek an autistic child, or did one fall in your lap. I would love to hear more about how you came to have him.


In the process of adopting. D is our foster son, who's been with us just about two years now. He basically "fell into our laps" lol, we were approached and asked if we would foster him, based on our backgrounds in working with children/people with special needs. Hubby worked specifically with autistic children for 7 years, and was known around town as "the autism guy" :lol: After D started to thrive in our home, he was put up for adoption, and after some long heartfelt talks, hubby and I decided to adopt him - we just couldn't allow for him to be moved again. This kid has been let down by everyone in his life, and we refuse to let him down.

Geez I love my kid.

The hard parts though are a)not knowing his background very well, such as when he first had symptoms, what he was exposed to, what interventions were done, what he was like as a wee one, etc., and b)knowing that if he'd been with us, and had good intervention earlier, he'd be a lot better off. We didn't get him until he was 6 1/2 - that's over SIX YEARS of lost time. I truly believe that if D had been put in a good, supportive, SAFE home from infancy that he'd be "normal" today.

Thanks rlneub for the bit of hope that my "older child" may still be able to heal, and thank you jrsmom for sharing about your child :D


Postby srs'smom » Sat May 14, 2005 11:45 pm

DS was diagnosed at 18 months. Shortly afterwards we started ST/OT. AT 21 months we started ABA/VB. At 24 months we started the GFCF diet and vitamin supplementation. Right now he's GFCF and soy free and gets Kirkman's everyday, cod liver oil, & Calcium/Mag.

When he was diagnosed at 18 months DS had no receptive or expressive language skills. He had no play skills. He always has been and still is an easy going and happy kid. He sleeps well. He was a great eater until 16 month when he started getting picky.

Today, he's 26 months old. He's so young it's hard to know where he stands on the spectrum- but I would guess mild-moderate. His receptive language has exploded. He has 50-60 expressive words plus a few more signs. We often have to prompt him with "what do you want?" or "Do you want ___" We are starting to get some basic 2 word phrases " Hi Daddy" "Doggie bye-bye" "go round round round". He knows his colors, shapes, body parts, etc. His social skills are also slowly improving. He still engages in quite a bit of stimming- almost all visual. He has some motor planning difficulty but his gross motor/ fine motor skill are just slightly delayed.

By far the thing that has helped him the most is ABA/VB. However ST, OT/sensory integration, and floortime have all contributed to his progress.

We've been doing the diet and biomedical stuff for only a month and so far it has not made a difference. We plan on trying biomedical stuff for 6 months before we give up on it.

I have no idea what the future will bring but I'm hopeful that one day DS will be HF Autism and to strangers will appear normal- maybe a little "quirky". That's the only thing that keeps me going.


Postby MIssy » Sun May 15, 2005 1:48 pm

Thanks Rick for that encouraging post about the older child on MB-12! It's very encouraging to hear that older children can still lose their dx.

My son Drew will be turning 8 in August. He was finally dx last June. Before that over the last five years, he has had many diagnosis: dyspraxia, anxiety, SID, developmental delay, ADD/ADHD, OCD, low muscle tone... Finally someone gave him the right dx!! I kept saying hey, all of these dx fit under autism!!

My labor with Drew was 36 hours long, he was my first!! His head was sooo huge they had to use vacuum extraction ( which for a long time blamed his condition on) The second day in the hospital he got his Hep. B shot, he immediately started to spit up constantly and have colic like you would not believe!! The only thing that would comfort him would be the swing or the bright lights in the kitchen. Other than that he developed normally, was a happy baby, played. had great eye contact, started saying words etc.. His colic got worse and they thought he may have reflux and prescribed predisone (sp?) didn't help. Then he developed ear infections, sinus infections, you know the drill. Then at 8 months he got bronchiolitis, he was put on antibiotics again and it wouldn't go away. The doctor sent him home after a neb. treatment of aubuterol. I asked my husband if they said he was fine and they said yes, he's fine to go home. I thought he looked terrible and was wheezy, but I put him down for nap. Later, I heard funny noises on the monitor and went up to check him. He was blue and was choking!! :shock: I gave hime CPR and called the ambulance. It seemed to take forever!! What I didn't get up aspirated into his lungs and caused pneumonia. He was in the hospital for four days in an oxygen tent. They thought that the neb. treatment loosened some phlem and he choked on it. After, he was on a nebulizer treatment 3x a day for 3 years!!

Drew then had his ear drums burst at about 12 months, AFTER HIS MMR SHOT!! He started tantruming and lost all language, wouldn't play, bad eye contact, started to throw up at meals, lost lots of weight, stomach started to bloat!! He looked just like the pictures of the little boy that DR. Wakefield showed at the DAN! Conference. He saw a gastro. dr. and they told us that he didn't have reflux but could have entercolitis( DING, DING, DING, DING, Right answer) unfortunately they did nothing about it and said he was fine!! :x Of course we're kicking ourselves now!! I have so mcuh guilt after seeing the scopes of those kids and knowing now that my kid was one of them!! :(

Drew has had sppech, O.T., and P.T. since three years old. We didn't start the diet until I had found out about it through all my years researching on the net and in books. Drew has been GF/CF, soy free, corn free, for about a year now. The diet so far has ehlped the most. His autistic "Dance" is gone he no longer "opera" sings but still makes up songs constantly! We use music as a teaching tool with him because this is definitely his strength! His psych. put him on drugs. Over the course of twoo years we tried Strattera, Paxil( an absolutely nightmare), Zoloft(did nothing), Adderall, and Nortryptiline. The last he was on for about a year. Then they added Ritalin. We stopped everything after we met our DAN! Docotr this past December and especially after Drew's heavy metal urine test results showed that he had been poisoned by heavy metals. He did five rounds of chelation on DMSA and his yeast problem got worse. He regressed over two weeks and we were terrified!! The doctor put him on Nystatin and he's been taking it ever since. Probably some time this summer we can start chelating again! After seeing Dr. Neubrander and talking with Rick at the conference, and expecially seeing how well Olifia's little Zach was doing, we started Drew on Mb-12 right after the conference. He has had five shots and gets his sixth tomorrow. His hyperness comes and goes but I am told they don't see this at all at school! Yesterday, I went through all of DRew's daily reports from his teacher. He had good days and lots of bad. On good days they would just say had a good day. Throughout the year, he has gotten only a couple of notes that said he worked hard today. Over the last month three out of every five days I get a note home that says he worked very hard today and was focused!! :D He is sitting in circle without stimming and focusing on the topic alot better. He is starting to intiate talking with his peers. His writing is getting better and he is starting to recognize more sight words. He is starting to talk in conversations with me and schooll says that he is always sooo happy! We're getting there slowly but surely. He still has his bad days but the ratio is starting to turn around!! :D

mom from mass
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mom from mass

Postby mom from mass » Sun May 15, 2005 2:31 pm

Hi Mom my child is 13. he had many of the same behaviours you child have. Hand flapping, Stimming, Ect. Is not easy. The journey is demmanding, and at times it can seem difficult and overwhelming. But our childrens will, and effort to get better is wonderful and beautiful. with all the vit supplements and all the things we do with them, it is not only demanding on us as their mom, but it must also be very difficult for them to understand why so many supplements ect. Our children are very smart even if they cannot say it all, or express them self. From birth my child had diarrhea. The firs thing I did with him was the GFCF diet. That took care of that problem I then gave him B12 tabs This help to calm him down and it also helped with his hyper behaviours. From 5yrs on he had the TEACCH method. Then I aded the Supplement Super-Nuthera vit. Q10 & DHA caps. & Melatonin. Then came the no more public school and he entered a private school with the ABA Therapy. TEACCH worked but he neded more. And then I came across this website and the rest is history.

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