We met Wes a year ago, he was diagnosed with Severe Autism, Mixed Expressive Language Disorder and severe Apraxia at the age of two and a half. Through various treatments and changes in behavior and diet, voice coaching and Immunotherapy like GcMAF, Wes can now not only talk, but is learning new words all the time, is responsive, inquisitive and even sings along to family songs.
Wes was 120 on the ATEC score (Autism Treatment Evaluation Checklist), his score is now 44.
*PLEASE NOTE: THIS ARTICLE IS FOR EDUCATIONAL PURPOSES ONLY. EACH CHILD IS DIFFERENT AND WOULD NEED TO BE ASSESED BY A MEDICAL PROFESSIONAL BEFORE ANY FINAL PROTOCALS CAN BE ESTABLISHED
Please read this story of inspiration and determination, as told by his loving and caring mother, who has worked so hard to achieve these amazing results.
This case gives hope to the many people who now have an autistic child in the family. Nearly one in fifty-nine children in the United States is diagnosed with autism spectrum disorder, according to the latest report from Centers for Disease Control and Prevention. Two decades earlier, the odds of diagnosis were one in one hundred fifty.
Wes is an inspiration to us all.
Our son Wes is now 7 years old. This time last year he could not verbally ask for what he wanted. Wes could not follow simple steps/commands, he would not come running in from the other room when his name was called. He would not stay clothed when home. Wes would not sing nursery rhymes, or say “I love you” back. He could not say “Mama” or ask for “Help”. He would not turn around if you said his name, or it would take several times to get his attention at times. His communication was solely pushing/pulling us to what he desired, or using an AAC devise to hit a button request.
With years of speech, OT, and PT therapies, at school, home, as outpatient, as well as biomedical treatments since he was 2 years old, our progress was minimal at best.
This is all no longer the case.
While we are miles left from the end of this race, we have made vast improvements in a short time with very few treatments to owe our thanks to.
Our first taste of true healing was our discovery of Nemecheck Protocol. We started this a bit after camel milk and feel together they made a winning combination. As with everything, this protocol is not for everyone as it may exacerbate existing gut issues, but in our case and like most, it started the healing process.
We had 4-6 weeks of loose bowels, but once that broke, our son’s stools improved and became better than ever before. Once this happened, true progress started to show. He finally for the first time started to imitate us through partial sound and approximations. He started to listen a bit better and retain things being taught to him. As amazing as this was, he was not always responsive and after a while the progress plateaued.
We took a break and started some other treatments but then we met Mary.
Watch a short video of progress we’ve made since beginning protocol:
GcMAF and M-Oil
The next treatment was the game changer for us and that is GcMaf and Mary’s Oil. Just a few days after starting it we got words!
Now these words weren’t perfect and were mainly approximations at first, but the intent and will was 100% and he began to try at every chance to repeat and perfect the words he was saying to us. Approximations became closer to full words.
He went to 2 and sometimes 3-4 word phrases, then 5-6 words and this is where we are now.
Everyday, every single day he is impressing us with his knowledge, determination, character, and accomplishments. He is starting to play hockey and ball now. He plays new games like Match, Lite–Brite, Potato head and Bingo, which held little interest to him in the past.
He looks to us to help him with his words. That is most important to us – he now invites the help and this allows him to grow. He sings songs with us!
We have tried many many different treatments and of all of them, the ones mentioned in this guide with a few supplements (Folate/5MTHF, GABA, L-Thenanine, Magnesium Orotate & Chloride Flakes), helped us get to where we are now.
For the first time in our journey, we feel hopeful that we may get to a managed recovery one day. We feel it may all be possible now.
We are forever grateful we met Dr Fermin and Mary and came across this protocol. Without it, our Wes would still be crying in frustration and tugging us around to let us know he was hungry.
Some things we have tried:
- Behavioral and Educational Interventions
- Social Skills Interventions
- Speech-Language Pathology
- ABA Therapy
- Supplements/Vitamins Including:
(High Folinic Acid(Leucovorin), MB12 Injections)
(GFCFSF Dye Free, Sugar Free, Yeast Free, No Additives, Elimination, Rotation Diet, SCD)
- HBOT (Hard chamber)
(ACC: ALA, DMSA & ALA, DMSA, DMPS, Chlorella, CaEDTA IV, Glutathione)
- Lyme Treatments
- Epsom Salt Baths
- Sensory Brushing
- FootBath (IonCleanse)
- Allergy test (IgE IgG panel)
- Autonomic Response Testing
- Parasites Cleanses (HumaWorm)
- Yeast Treatments (Flagyl, Nystatin)
- Nemecheck Protocol
- Stem Cells
- Mary’s Oil
- Magnet Therapy
*Please refer to links below to see what we have done during our journey
Diagnosis & Prognosis
Wes was diagnosed with…
- Mild to Severe Autism
- Mixed Expressive Language Disorder
This is a way for parents to keep track/score their child’s progress over time. I would recommend you take throughout your journey: ATEC Test. [UNDER 10 OVERALL IS CONSIDERED RECOVERED]
Here is the Mild to Severe Chart. We are now in yellow @44!:
We also have some on our list that we were doing before and have continued but were cleared with Mary (Folate, Iodine, Zinc). We will be adding the ALA next. *Direct links to supplements in pdf link above ^.
|1||Get Tests for the following: Nagalese, Vitamin D Hydroxy, Renal Function/Metabolic.|
|2||Do an ATEC(Autism Treatment Evaluation Checklist) test for baseline: ATEC!|
|4||Get your Syringes.|
|5||Follow Oil Protocol Below.|
|6||Do Speech Therapy on nights of administration. Here is the Video.
Also, see outline below.
|7||Track Your Progress!|
GcMaf & Mary’s Oil:
*please note: its best to follow times below but if you refer to my supplements guide you’ll see we are unable to have things spaced out so much.
This is the GcMaf vial. We use these syringes pictured above. Our dose is .5ml. We give this first thing in the morning every 3rd day.
This is the Mary’s Oil (two different amounts pictured). Our current dose is 0.4ml -0.5ml (depending on severity of teeth grinding/stimming that day.
We give 2-3 times a day.
We draw oil, place under tongue and then chase with organic able juice via a syringe.
Verbal Training with Mary Jewell
What You Need:
- Warm Epsom salt bath at Nighttime
- Turn off Wifi, and any other distractions!
- Simple example words: Ball, Mama, Daddy, Cat, Dog
- Use beeswax or chemical free candle!
What To Do:
1) Light the candle in front of mouth. 2-4 seconds max!
2) Try the choice word with full emphasis, say “love”, then have them try. Do once more, say “love”, then have them say “love. Blow out candle.
3) Then put their hand on your mouth and repeat word “love” then put their hand to your chest and say word “love”.
The chart below is the order and placement for Magnets based off of our evaluation with Dr. Celma Fermin.
It is optimal if you can place magnets as shown, due to the nature of our child’s condition we had to be creative with getting the magnets on so we created an “outfit” he puts on each night. See below for references of what we did:
We used an old belt and tapped it to the front and back of shirt and then also to back of beanie to reinforce the magnets and keep them from snapping together.
Zatador Nasal Spray
We worked with Mary to get a special blend with saline. Once you order, this is the protocol given to us:
Giving the Spray…
- One nostril per day
- Alternate nostrils each day
- One spray at a time
- 15 mins away from food and drink
“This kid has gone from all beige diet (gluten free waffles, pancakes, fritters, biscuits, and pear + water mixed juice) to now so much variety! It’s a struggle some days for sure still and we got awhile before he’s “asking for broccoli” but now we’re eating Watermelon, Pineapple, Grapes, Strawberries, Mango, Blueberries, Pumpkin, Apples, Green Beans, Carrots, Peppers, Peas, Corn, Squash, Tomato, Beets, Broccoli, Lettuce, Onion, Cauliflower, Zucchini, Beef, Chicken, Turkey Bacon, Green smoothies, Only water during the day, no more juice!!! Now most of these fruits are thrown into a smoothie, but he used to refuse refuse refuse. It’s been one of the hardest changes yet but man it is paying off!”
It is important to eat clean along with a quality probiotic in order to heal the gut. We’ve been GFCFSF Dye Free, no processed sugars (we use honey and maple syrup one occasion), organic and non-geo food for about 5 years now.
We compiled some recipes like Mary’s Flatbread, Zucchini Fritters, Cassava Pizza, GF Bagels, Quinoa Crepes, Grain Free Pumpkin Muffins, Pot Roast, Pot Pie, GF Breaded Chicken Nuggets, “Cheese” Sauce, Cauliflower Rice and Oatmeal, etc..
We also LOVE this website: https://www.superhealthykids.com/ while it is NOT primarily gluten free they do have gf/vegan options. I use this for ideas and then swap out the gluten/dairy items.
Test for monitoring the effect of therapy of cancer and certain viral infections, including HIV & Autism
The test measures the activity of alfa-N-acetylgalactosaminidase (nagalase) in blood
Nagalase is an extracellular matrix-degrading enzyme that is (increased) secreted by cancerous cells in the process of tumour invasion. It also is an intrisic component of envelope protein of various virions, such as HIV and the influenza virus. It is secreted from virus-infected cells..1,3,4
Nagalase deglycosylates the vitamin D3-binding protein DBP (in humans better known as Gc-protein). Gc-protein is the precursor for the major macrophage-activating factor (MAF). Gc-protein carries one trisaccharide consisting of N-acetylgalactosamine with dibranched galactose and sialic acid termini. By the deglycosylation the (complete) trisaccharide is removed from the Gc-protein. The glycosylated Gc-protein cannot be converted to MAF anymore.
Normally MAF is produced from Gc-protein by sequential removal of the galactose and sialic acid termini from this protein by respectively beta-galactosidase of inflammation- primed B lymphocytes and sialidase of T lymphocytes, with N-acetylgalactosamine as the remaining sugar. Macrophage-activation for phagocytosis and antigen presentation is the first step in the immune development cascade. Lost precursor activity leads to immunosuppression.
Increased activity of nagalase has been detected in the blood of patients with a wide variety of cancers, like cancer of the prostate, breast, colon, lung, oesophagus, stomach, liver, pancreas, kidney, bladder, testis, uterus and ovary, mesothelioma, melanoma, fibrosarcoma, glioblastoma, neuroblastoma and various leukeamias.1,3,4 For various types of tumors various levels of nagalase activity were found.7 It seems likely that secretory capacity of individual tumor tissue varies among tumor types depending upon tumor size, staging, and the degree of malignancy or invasiveness.7 Increased nagalase activity has not been detected in the blood of healthy humans.1
It has been established that the nagalase activity is directly proportional to viable tumour burden..1,2 Studies correlating nagalse levels with tumour burden suggest that the measurement of this enzyme can diagnose the presence of cancerous lesions below levels detectable by other diagnostic means.1 In research a day after surgical removal of primary tumours from cancer patients nagalase activity suddenly decreased to near the tumour-free control level, suggesting that the half-life value of nagalse is less than 24 hous.1,6 The short half-life of nagalase is valuable for prognosis of the disease during various therapies.1,5
Nagalase is the intrinsic component of the envelope protein gp120 of HIV-virions and of the envelope protein hemagglutinin (HA) of influenza virus. Nagalase activity is the sum of enzyme activities carried by both HIV virions and unassembled envelope proteins.4
Nagalase in blood is a sensitive test for monitoring the effect of therapy in cancer and certain viral infections, including HIV infection. Because of the short half-life of nagalase, the method is suitable for monitoring various types of therapy. The great sensitivity of the test may help the physician / oncologist in obtaining a better understanding of the therapy and to fine-tune the treatment.
Note: The values may be affected by drug used in the five days preceding the sampling. Drug use must be indicated on the questionnaire submitted with the requisition form.
- M Korbelik, VR Naraparaju and N Yamamoto.The value of serum alfa-N-acetylgalactosaminidase measurement for the assessment of tumour response to radio- and photodynamic therapy. British Joumal of Cancer (1998) 77(6), 1009-1014
- Reddi AL et al. Serum alpha-N-acetylgalactosaminidase is associated with diagnosis/prognosis of patients with squamous cell carcinoma of the uterine cervix. Cancer Lett. 2000 Sep 29;158(1):61-4.
- Yamamoto N and Urade M. Pathogenic significance of alpha-N-acetylgalactosaminidase activity found in the hemagglutinin of influenza virus..Microbes Infect 2005 Apr;7(4):674-81. Epub 2005 Mar 22.
- Yamamoto N. Pathogenic significance of alpha-N-acetylgalactosaminidase activity found in the envelope glycoprotein gp160 of human immunodeficiency virus Type 1. AIDS Res Hum Retroviruses. 2006 Mar;22(3):262-71.
- Yamamoto N. Immunotherpy for prostate cancer with GC Protein-derived macrophage-activating factor, GcMAF. Translational Oncology. Vol 1, no 2 june 2008, [pp 65-72.
- Yamamoto N et al. Therapeutic efficacy of vitamin D3 binding protein derived macrophage activating factor for prostate, breast and colon cancers. Cancer Res. Proc. 38; 31 (1997)
- Yamamoto N et al. Deglycosylation of serum vitamin D3-binding protein leads to immunosuppression in Cancer Patients. Cancer Research 56 : 2827-2831, june 15, 1996.
Track Your Progress
Below you can download a custom daily tracking sheet we created and used for chelation, supplements, meals, moon cycles, behaviors, etc.
TRACKING Week(s) (10/13-10/22):
I will give a summary since this is a lot of info:
POSITIVES😀: Our son overall has had increased vocality. He is babbling more, making sounds that are typically difficult for him (M’s). He is repeating/mimicking us more easily in words and gestures. He has been reported in school to playing with figurines (which he doesn’t do too often), he has been doing more puzzles this weekend (rather than his usual drawing/coloring), he has been kicking/throwing around ball with me and on own w/o prompting (new). Bath Speech Therapy was success for first time this weekend! We gained his attention and he took his time and attempted the word (Dog).
NEGATIVES😔: Wes has been having horrific tantrums – THIS IS NOT DUE TO THE PROTOCOL! This started just prior to introduction. Wes is a pretty complacent, easy going, pleasant demeanor child. This recent activity has been plaguing us. We feel is may be due to parasites and vitamin/mineral levels which we are trying to remedy with Mag, Zinc, D3 ( and anything else Jeff Bell suggests) and also we started Diatomaceous Earth this morning. Due to our son’s oral aversions, the oil and the GcMaf is quite difficult to get in, but it does seem to be getting easier with time. Wes’s current bowel situation is not great. He goes 5-10 times a day hard solid lumps. We are hoping with assistance on diet and with the protocol this will improve. We have not been able to successfully do the Onion/Feet detox yet. We are very excited to see what the next few weeks will bring us.
UPDATE – for Week(s) (10/23-11/5):
POSITIVES😀: Longer engagement in parent-led play. Listening to stories (he’s done in past) but listening a little longer at times. Not just repeating “bye”. He is actually looking to gain eye contact, wait for recipient’s attention and then saying “bye”. Sleep as of this weekend is better with falling asleep (10-15mins). Wes may not be saying much more than before but he is trying to. We are seeing the wheels turning. When he says ti-ckle, or be-d he is approximating the syllables (after we say the sound) but he is now trying to actually combine those sounds and you can see it in his eyes and gestures he is trying to make his brain work to do so. He played for a full 30mins with soccer ball in fields with us. He has had no interest in this prior. He did say “bread” when he wanted more of my banana bread I just started making him. He laid around with us and my parents longer than usual this weekend. Usually he’ll sit about a minute then hop up but he really lounged and relaxed. It was good to be able to see him do that. My parents enjoyed this veyr much as well. Above all, we dreaded giving this oil to him. It is very difficult to give Wes medicine. He is a fighter! We SWEAR he knows this stuff is helping him b/c we don’t even have to say “medicine time”. He comes sits on the floor in front of us and sits back and try to lift up his tongue to the best of his ability That is truly amazing to us.
NEGATIVES😔: He awoke twice past few nights in middle of night but this is most likely due to approaching New Moon. He has wet the bed (through diaper) twice in the past 2 weeks. Wes is potty-trained except for at night. This seldom happens but could be related to supplement or something else.
UPDATE – for Week(s) (11/5-11/15) [12th dose in GcMaf]:
POSITIVES😀: As of the past week, language has been at a gradual but steady increase. He is babbling the most he ever has. He is making new unique and varied sounds. He is repeating more. He is imitating with words. He is trying to piece it all together and you can tell by looking at him and his repeated attempts to get the sound out that he is trying and this is new and amazing! The first time since a year ago when in backseat and I said “Hi” and waved to him through the mirror in front seat, he reciprocated. It’s been so long since he’s done that. He is using his device to speak on his own, not only when forced to during therapy. he actively seeks it more for communication now. He pressed the therapists name when we were in the waiting room, waiting to be seen the other day. He does not use this device for anything other than requests! He also said, “Eat downstairs” on his device b/c he wanted to watch show and finish his dinner. This is communication! Bath sessions are getting better as well. He is paying more attention and repeating.
NEGATIVES😔:Teeth grinding and hyperactivity was at a high for 2 days straight on Tues and Wednesday. He will not use the chewy tube anymore to soothe his anxiety and teeth grinding. He only allowed this for about a month or two. We tried for year to get him to to cut own to grinding. For some reason he does not want it anymore now : ( We are giving zinc so maybe he doesn’t feel the need to chew which would be good, but not sure what to do about grinding unless again parasites come to play.
UPDATE – for Week(s) 11.15.18 – 11.30.18_01:
The days we have dreamed of are here it seems. It’s so hard to accept what we are seeing as it seems like a miracle and we just pray it continues to progress like this as it seems recovery is in our future if so.
POSITIVES 😀: SO MANY! I have attached more detailed notes but as overview… -Wes is doing less and less vague approximations and more trying to speak full words. He is even doing some short phrases “go home”, “tickle-me”,”more-fries”, etc. He is saying things more clearly and not just the beginning or end sound of the word, he is sounding it out to get it right and not so much frustrated at being helped with it. -He is throwing/catching ball at 2ft away while standing for about 2-5mins. -He is saying Hi/Bye at times without prompt. -Playing more games! Match we’ve been playing! -He has been trying to sing! He sang the letters with me for B-I-N-G-O yesterday in the car! This is important b/c I’m not in his face and he could easily ignore me but was engaged. He is trying to sing itsy bitsy with hand movements for song and also Twinkle Twinkle. He did ABC’s the best he ever has on headset this morning!
NEGATIVES😔: Teeth Grinding and Vocal Stims – we’ll take this with all these gains we’ve seen! See more details below.
I apologize – end of year lots of work deadlines. There is so much to report. Our Wes has been improving bit by bit every day. Here he is doing his alphabet with my wife on his voice amplifier… I think we will wait a month or so before redoing atec. I think we have definitely dropped some points for sure.
POSITIVES 😀: Attention span is increased as he usually fades out at “l”. We can all see his confidence has increased with his ability to say “tickle me”. We did Christmas bulbs last night and for the firs time ever he was actually excited to do it and wanted to put on all the bulbs Years past we’ve had to drag him the whole way. He is now for the first time able to say “mama” to my wife (thought this is still prompted). He is using sarcasm! saying “come” or “come on” when he doesn’t want to “work” for therapist! He has said “Go away Daddy” when it was time for bed, says “All done” or “done” when he is finished his food. All spontaneously. He says “wait” and “more” and is able to generalize it not just say more for say requesting more food. He understands it in different applications. Speech teacher said, she loves how he has “anticipation” which she says many kids on spectrum do not. For instance you in tickling he will get excited if you fake him out and clenches up anticipating the tickle. So we have some short phrases now. He is able to tell us “No” as well. He is able to navigate on his device and form sentences “I want the pink marker” So we can see that he know how to form the sentences just can’t say them yet. We are really looking forward to more clarity in his speech and of course more of it but this is so promising. Can’t wait to share more.
NEGATIVES😔: Note sure if tic or something he’s heard but he now does a weird triple cough and then says “wow”. Teeth grinding still prevalent. It’s been a year since he’s been taking his clothes off. He used to be in diaper all day when he was home. As of the last few weeks he’s been taking them off again, we have to keep putting them back on. Noticed some toe-walking as of the last few days. Not to an extreme but we have’t seen this in awhile.
UPDATE – for Week(s) 11/30/18-1/6/2019:
POSITIVES 😀: Wes is saying double if not triple the amount of words since starting. He had about 10 words back in say September, but only a few others could actually understand. He is using his words for requests and even comments like “Come On”, “Wait”, “Wow”, Yay”. His personality is really starting to shine through. Today he played outside with me running around kicking the ball and not as a demand or part of some therapy, he was actually enjoying it and looking to reciprocate. He read a short little book to us and we didn’t even know he could! The school sent it home and must have been working on it with him. We’ve always felt he could read but this confirms his hyperlexia. He is gaining more confidence now that he is saying words and really seeing the benefits as opposed to pushing us around the house or leading us by hand for things. He even takes it upon himself at times to try and correct the word and “get it right” on his own.
NEGATIVES😔: Doing DE for parasites and still not seeing much help during moon cycles. I know we said we’d address later but making note. His sleep is pretty darn good otherwise, it’s just during those cycles we get that crazy laughter in middle of night. Him bouncing around, and multiple wakings. Him taking long time to pass out. Still a bit stimmy most days with high pitched vocal stimming. Teeth grinding pretty good still. We might be seeing some yeast, but not sure. Have a couple ideas here though. Overall, just waiting for him to finally break out! Get these words down. Still can’t do G, H, J, L, N, R, U, W, X letters. Still struggles repeating multi-syllable words correctly. Lots to overcome but we are so thankful we’re finally getting somewhere.
UPDATE – for Week(s) 1/6/18-1/16/2019:
We are very low on oil and waiting for next shipment. I personally have seen some I don’t want to say regression but a rough patch we hopefully we’ll soon overcome. It is our fault we should ordered a bit sooner; HOWEVER I do think it may be a blessing in disguise b/c it shows us how Wes might be doing w/o it and validates and links the progress directly to the oil. If there was any doubt before, we can see now for sure that he NEEDS this oil!!! POSITIVES 😀: That said above, speech has not regressed in anyway and continues to press on. He is continuing to string sounds together make more “sense” of it and use small phrases mostly two words some three. He played hockey with me (passed 2 times) last night which was awesome. He is throwing ball back and forth to me 20x’s as well while standing not only sitting. He is running around with em and our dog in the backyard instead of only going on trampoline. Of course this is not preferred but he is not fighting it.
NEGATIVES😔: Ever since the last New Moon Wes has not been sleeping. The worst it’s been in a very long time. He is waking 1-2 times a night laughing and giggling at nothing. He is taking an hour or more to go to sleep and is waking almost an hour earlier. We usually see oddness like this surrounding moon but it’s maybe a few days and is gone. It’s been about a week and half now. I really hope he gets back to old schedule. The past week he has had much more vocal stimming, a little harder to get his attention and eye contact. Teeth grinding still present. I know that a full moon is coming any day now. I feel like his nightime issues are yeast and/or parasites and the oil was helping with that. I’m not sure if I should continue the DE as I almost feel like ti is making that situation worse. I’m not sure if I should try and give some biocidin or other yeast fighters and if that would interfere with the protocol. Any suggestions? We are still doing magnesium flake baths and mag oil on the backfeet at night also with oral mag. We do give gaba and thenanine at night and use essential oils to help calm him.
UPDATE – for Week(s) 1/16/2019-2/6/2019:
POSITIVES 🙁:Using two to three word sentences unprompted now “All done”, “More Juice”, “Go Away”, “Pick Me Up”. Singing by filling in words he can say while we do songs together. We didn’t see much for a few weeks w/o oil then with it back now for less than a week we’re back on track. Playing hockey with dad (20 passes), throwing/catching ball 2-3ft apart while standing (20 full passes). Has about 20-30 intelligible words unprompted, 50+ prompted words, many approximations. Started responding “yes” clearly when asked a question! Used to nod or would only repeat what you would say to confirm. Still does this but we’re seeing something new. Adapting by taking technique learned in speech and applying elsewhere to say new words outside of sessions. Problem solving skills. Extended attention at times, playing a full lite-brite board or two Match games. Started jumping for hopscotch! Would only step or walk before. Tries to mimic dance moves. Singing along (the fill-ins) for songs prompted and unprompted. Reading books aloud together and on his own. Following directions better.
NEGATIVES 🙁: Teeth grinding is increased. Hyperactivity and stimming still was bad for a few weeks but a bit calmer past few days. Covering ears daily now for noise sensitivity was never as big of a problem in past but shows he is more aware. Vocal stimming bad for about 2.5 weeks, past few days better though. Fearful of some cartoons.
UPDATE – for Week(s) 2/6/2019-2/10/2019:
POSITIVES 🙁 : Tolerating public outings better. Was able to sit for 2 hours to watch a game. Went to a local museum and attempted every attraction and had no push back. Even climbed up high to “get a view” when typically would be too fearful. Continuing to play hockey well.
NEGATIVES 🙁: Needed headphones for both outings. Sound sensitivity is at all time high cupping ears several times throughout the day, at times w/o and noticeable change in surroundings to warrant it. Still up on moon cycles. Vocal stimming high, rocking, putting clay down his shirt, taking off shoes on playground, seems to need more sensory input.
UPDATE – for Week(s) 2/10/2019-2/18/2019:
POSITIVES 🙁: While progress has slowed it has not stopped. Over the weekend was first time our son climbed into bed and relaxed a bit with us. He typically only sits for a minute and then gets up. He never wanted to lay down with us unless sick. Responded yes or no when asked (easy) questions this weekend.
NEGATIVES 🙁: With the full moon we’re back to getting up in the middle of the night. 1am, 2am, 4am. We need to find something for parasites eventually.
UPDATE – for Week(s) 2/18/2019-3/07/2019:
POSITIVES 😃: Still progressing. Now unprompted he is saying “I want …” We’re at three word phrases!!! Eye contact has been amazing! Hope it stays!!! He has been attempting more songs with us. More personality coming out. He knows if mom will say no he will quietly go to me while looking at mom and whisper his request hahaha! Cracks us up!
NEGATIVES 🙁: Right now, no comment on sleep as its been off due to illness. Still battling bad chest cough but improving each day. All other symptoms subsided. He has been a bit irritable than usual but again we attribute this to his sickness. Very happy to see that since Oct we’re still getting gains! Latest video attached. You can see a slight improvement in pronunciation and in the singing at end from previous videos in this thread.
UPDATE – for Week(s) 3/19/2019-4/11/2019:
POSITIVES 😃: So we’re getting small bits of conversational communication! This morning he said “come” then motioned me near. When I got close he read aloud the letters on my shirt. He wanted to see what was on it. Last night when asked if an animal he was drawing was a bull, he said “no, cow, mooo”. This is amazing! He has never answered appropriately to this extent before. Also for the first time he initiated a game twice that he fully led and was not taught. On the trampoline he says “stop” waits for us to stop, then says “run”, and we run. Then “sit-down, stand-up, walk” etc. We are so thrilled by this! At the park we usually bring a bin of cars to push down the slide (not because he ever wanted to but b/c the therapist says its a good way to get other kids to approach him to play). At the park on Tuesday he carried the bin himself out to the slide, up the steps and sat down and counted aloud “1, 2, 3, go” looking at me to engage and count with him and then pushed the cars down! These are tools we need to build friendships! What a great week!!!
NEGATIVES 🙁: Tons of verbal stimming, screeching (nothing new but haven’t seen this bad in long time : / Ever since his last sickness he’s been having hard tim with this. Also since illness he has had a hard time with transitioning and rigidity. Hoping this fades back to where we were. I hope PANDAS is not why we are seeing this. Things are going well otherwise!
UPDATE – for Week(s) 4/11/2019-4/23/2019:
POSITIVES 😃: We’ve increased oil just slightly and have been getting lots of fresh air outside! We noticed last summer on vacation as well in the mountains an overall increase of awareness and engagement in fresh air. We’ve been outside everyday since the weather has allowed and he is doing really awesome this week! He is putting longer phrases together here and there. “More pick me up”, “I want mom-mom pop-pop” “more eggs” (for hunt). We’e seen his silly side this week. He was being goofy and doing something that is hard t explain but making a funny face and would run up to me and give me a kiss and run back. This was 100% being goofy kid was not a stim or related to autism. He has been smiling and reacting to us appropriately at times this week. Laughing and anticipating things. He has been saying “no” out of defiance but not aggression, just ex: time to go home now, “no” haha. Using more spontaneous words. Wonderful week and last week with new speech therapist he did fantastic!
NEGATIVES 🙁: Sleep still off with full moon. Still as always veyr rigid with foods. Not that we like to push sweets ever but for Easter we did offer natural cookie and natural/organic lollipop. Wanted no parts which is fine. Still stuck on beige diet, with “bread-like” foods, almond flour waffles, fritters, potatoes… We are very excited to visit the clinic soon and plan to chronicle our time and improvement with our visit. Stay tuned!
UPDATE – for Week(s) 4/23/2019-4/30/2019:
POSITIVES 😃: Things are going well! More unprompted speech and stringing words together. “Throw rocks” we never heard him say “throw” or ever tried to get him to repeat it before. Saying “bye bye mom-mom” instead of just bye. Requesting “park” going on big slides and over park bridges he was very scared to do before. Really enjoying some typical things, throwing rocks in the water, kayaking with me on our lake. Being a typical kid, going to his playroom and “shutting the door”. Telling us “go go” and swatting with his arm when we come in to tell him bath or bed. Not sure I mentioned but we had first hair cut in actual salon last week he did awesome! This weekend both Sat and Sun he came in with blanket to lay in bed with me and my wife just to relax with us 30mins at the least. This kid does not sit still ever. We have tried in past since he was a very small to sleep in bed but he could never settle to do so. It was really great being able to relax and see he was relaxed too. NEGATIVES 🙁: Pollen is horrendous right now. It is making him a bit irritable, snotty nosed, water eyes, coughing. We’ve tried Nettle Leaf in the past. Anyone have any more natural suggestions?
UPDATE – for Week(s) 4/30/2019-6/05/2019:
Where do I begin… We just got back from our amazing trip to see Mary at Dr Celma’s clinic! Mary posted details above about the treatments we did Magnetic and Stem Cells. We also did a vitamin/mineral iv to address Wes’s deficiencies. We adjusted his cbd doses to stop his teeth grinding. We found that about 20mins after about .5ml of oil the teeth grinding would stop. We we’re heartbroken but also relieved to find that Wes has Tetanus rather than Autism!!! That’s not to say it sets him apart from the autism children out there with diagnosis so let me clear that up. We are saying that he along many others have Tetanus and NOT Autism from vaccines! He was given dtap and tetanus booster same day as very likely to my wife while pregnant with him. He has muscle spams, teeth grinding, lock jaw, tight stomach, low muscle tone, processing issues, apraxia, hypermobility, and host of other symptoms aligning with this diagnosis aside from the physical documented proof of this infliction. Dr Fermin was absolutely amazing and we could not have gotten hooked up with a more kind, loving, experienced, and intelligent person. We are so grateful to have met him. He was so wonderful with Wes and Wes was very comfortable with him which made us all feel at ease. We knew all of his decisions were made with great care and consideration and most importantly what was best for Wes. During our stay we noticed the following behaviors:
POSITIVES 😃: Some really great interactions! With a Myla he jumped along on water trampoline with her. He counted “1,2,3, go” so that she would dive in the water and they’d repeat this game. When in the water (one if his favorite activities) he left to go to May and say “Mary, come”, “swim” so that she could join us in the water. This was beautiful moment wanting everyone to join in and be happy with him in the water. When saying goodbye one night he grabbed to hang on to Martin. Each night he told my wife and I to “lay” and “sleep” so we could all lay down together while pushing our heads down to pillow. He wanted us to sing twinkle twinkle little star so he said “twinkle, twinkle yes”. He was incredibly tolerant of the multiple long plane rides, truck rides, ferries, boats we took during our stay and didn’t protest at all and actually rather really enjoyed the rides (minus the airplanes as there isn’t much a view from the middle seat). He got to do some incredible things he never did before and I think it will truly be an experience he will never forget. He has been doing a wonderful job with announcing “bathroom” when he has to go instead of just going anywhere outside he pleases. Tonight at home he wanted us to “tape” his artwork on the wall to display it. This is new as well.
NEGATIVES 🙁: Vocal stimming increased exponentially. This is before treatments though. We think a combination of environment change and also we made quite abrupt changes in supplements as we were worried to travel with too many liquids through customs and didn’t not have some of the same supplements while down. We will keep an eye on if vocal stimming decreases with Magnetic Therapy as the bacteria Shigella was found and this should treat that so hopefully also the vocal stimming will dissipate. Teeth grinding also increased but we found increased dose of oil stops this. We will be doing the following before an in-person follow up in 6 months… 1)Magnetic Therapy – 20mins of polarization at specific body points determined in our initial session. This therapy will continue for 6 weeks, and more if we choose. Will post chart to follow. 2)Supplements – We made adjustments to his current scheduler and added some more supplements. Will post schedule to follow. 3)Heavy Metal Detox via EDTA Suppositories. This will be challenging but we’re actually looking into this before and believe this will be a big piece in getting these metals out. 4)It was established that we as parents have been overcompensating by talking for Wes when he is addressed. We are going to also do a bit of habit breaking therapy ourselves 😉 by allowing Wes to use his words EVEN if that means they are very delayed in response to a question/statement or don’t come at all. 5)Diet – For rigidity in diet…Wes eats healthy BUT is very limited in what he eats and is pretty strictly on a “beige” diet. We are going to give in less and offer a variety of foods that we know he may not want but will continue to offer so that he can expand on his current meals.
Here is an updated ATEC. At the beginning (red), 5 years ago we started at 120. The past few years we have been hovering around 70-60 and haven’t been moving out of that bracket. Before we started with Mary we did an ATEC and scored 60 – in about 8 months on protocol we’re now we are at 44 (yellow)! We’re 16 points down! We’re very hopeful in the next 6 months or so to see us close to our recovery objective! Wes’s major issues tend to fall in the Health/Physical/Behavioral section. The other section’s he falls in the Mild range!
UPDATE – for Week(s) 5/20/2019-6/17/2019:
We have been working very hard on diet! We are now only drinking water – no juice! We see now how hungry this boy is when he isn’t filling up on juice and how dumb of us to never realize this. He would drink so much all day long and b/c tests always showed he was dehydrated we just thought he needed to drink a lot al the time. Well now that he is only getting non-preferred water with his meals, he is eating 3x’s more the food. He is a bit skinny and small so we are very happy to see he might be gaining some weight now! Side note he was 37lbs when we weighed him in Belize so we will check up on this as he has weighed the same for years now.
POSITIVES 😃: Food-We are only drinking water and are gradually improving diet. We have offered orange, watermelon, banana, peach, and mango with no success yet. Also, snap peas, lettuce, mashed potato, and rice no success. BUT we have eaten chicken, carrots, green peas, apple slices, almond butter, onion, beef, and avocado so far! I cannot CANNOT believe we got him eating peas and carrots last night. My wife almost cried!!! This boy would only eat applesauce, crackers, chips as sides, and main meal only biscuit or beige bread like in appearance foods! Granted we did a good job hiding veggies and fruits in but now it’s time for the next stage, eating things raw and knowing he is actually eating it. This has been a VERY difficult task for us and he is skipping some meals with refusal to eat what is offered, but the fight is less and less and some meals he is even trying without a fight atm. School – has reported, no teeth grinding, and decreased vocal stimming. At home, the vocal stimming can be quite loud and long while he is coloring BUT the oil does help! Sleep – We are no longer waking him at 10pm to go to bathroom. He is sleeping from 730/800pm – 700am dry!! We are not waking in middle of night so far and it is full moon! We are going right to sleep maybe 20mins top to fall asleep on some nights.
NEGATIVES: 🙁: Seems a little constipated, but we are starting new foods and will add some flax to help him along. Nothing else negative at this time!
UPDATE – for Week(s) 6/17/2019-6/22/2019:
Just a quick one here. In this and last week we have consumed: tomato, onion, peppers, spinach, carrots, peas, broccoli, strawberry, banana, apple, beef, chicken, quinoa pasta, coconut wrap, cashew yogurt!!!!!! He has never eaten these things before (minus the meat over a year ago). This is amazing! I’m so thankful that Mary gave us that push we needed to see that Wes was ready for this – and that through the sweat and tears was going to be totally worth it! We have further to go yet as these are prepared in meals (so were not graduated to full side of veggies yet) but he knows he’s eating them and has gained the understanding that we need to try these things. We are only drinking water and for snacks he is asking for apple instead of chips now!
UPDATE – for Week(s) 6/22/2019-7/8/2019:
POSITIVES 😃: We are drinking green smoothies now! Yes with bribery of preferred foods but he is consuming them and this seemed impossible before. Teeth grinding still down with oil, vocal stimming still pretty bad (hoping magnets will help with this now that we got this process going). We got the saliva collection for dna and that will be in 8 weeks. Spirulina finally shipped and will be starting that soon as well as edta suppositories. We are having some issues with probiotics and will have to figure that out.
NEGATIVES: 🙁: SThis week he’s been a bit more spacey. I aded the inulin back in and we’re back. It i also helping with his stomach. Before he was going 8-10 times a day but now that we have a more normal diet His bowels are moving regularly. We don’t want to do inulin long term but this is one supplement we always see him doing better on so we will keep on for now.
UPDATE – for Week(s) 7/8/2019-7/19/2019:
We have started the Spirulina. We are up to 7 tsp’s a day now. He is taking with no problem at all. Mixed in apple juice. We’ve been on the new probiotic almost a week now and will be starting the edta suppositories soon. We’re still doing 20mins each night of magnet therapy.
POSITIVES 😃: – Wes is speaking a bit more spontaneously but slow steady changes. We are eating green peas and green beans (w/o mixed in anything) just a little bribery w/ his homemade bread but we’re cutting back and increasing how many spoonfuls of things we get for desired. We had yogurt this morning! My wife is so happy she is no longer preparing separate meals each night, we all eat together.
NEGATIVES: 🙁:- He has been wetting the bed every other night now. We believe this might be due to the addition of probiotic (which is given with small bit of juice). We may need to start waking him again a few hours after sleep to empty bladder.
UPDATE – for Week(s) 7/19/2019-7/24/2019:
We have successfully completed two rounds of Suppositories not certain but we will see.
POSITIVES 😃: We have not had any sleep issues now for awhile. He is sleeping at least 10 hours a night. Some nights he is taking a longer time to fall asleep though. We had a great morning. Lots of eye contact and interaction. We sang a song he likes where there is back and forth lines and he did well. Will try to record. After his feet got water on them he said “feet wet” and grabbed a towel to wipe them off. He said “some more” when requesting we sing song again. He said “sleep, goodnight” last night at bedtime. So he is adding words on his own to phrases we commonly use.
NEGATIVES 🙁:We feel he may be a little temperamental due to detox but we will see. He has a hemorrhoid but this has been on and off issue when he pushes hard at potty time. We’ve been instructed to use honey on it. Will post video soon… its still processing.
UPDATE – for Week(s) 7/24/2019-9/21/2019:
Quite a big break fro tracking. During this time FB closed Mary’s group down where I was regularly posting… We have since started EDTA Suppositories. Let’s bring you up-to-date:
POSITIVES 😃: Wes is now saying phrases as long as this when requesting for shows… “Two Tone Motion Elephant”, “Super Why Jack and the Beanstalk”. Wes sings along in back and forth fashion, filling in blank songs… Can sing…Old Mac Donald, Itsy Bitsy, Twinkle Twinkly, ABC’s, BINGO (with clapping), 5 Little Monkeys…
He will say Wait, Please, Thank you. Showing more independence. Shutting doors for privacy, turning on lights, climbing into trampoline on own. We’ve sen 10% increase since our trip to Belize. We are hoping to be at better spot after introducing ALA.
NEGATIVES: 🙁: We are bed wetting every few nights even after topping liquid at 6:30pm, waking at 11:00pm to go to bathroom. We think it may be behavioral as this picked up mainly with start of school. More temperamental as of the last month, but seems to be dying down. May also be related to school.
*PLEASE NOTE: THIS ARTICLE IS FOR EDUCATIONAL PURPOSES ONLY. EACH CHILD IS DIFFERENT AND WOULD NEED TO BE ASSESED BY A MEDICAL PROFESSIONAL BEFORE ANY FINAL PROTOCALS CAN BE ESTABLISHED
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