Many of Portland’s Western Red Cedar trees are dying due to climate changes. In the park near our home, it has happened to many of them in the past twelve months. The only good thing that came out of it was The Stump. One particular stump we found is now “our stump” and L and G love to play on it. They’ve played on it on cloudy days, on sunny days, and in the rain. It is hard for L to play with G on any focused activities with coloring or building. But physical play is usually easy and lasts a pretty long time.
Gavin has never had GI problems. He usually makes a bowel movement a few times a day and he has always been like this. He was only constipated a handful of times in his five years of life.
For this reason, we don’t believe fully that he has any problems with his gut. We tried inulin once, and it actually made his bowel movements a strange green color, hard and chalky, and that helped tally up those times of constipations in his life. I’d try it again now though since he is a little older to see what would happen.
We tried nystatin even though he had an OATS test that was negative for yeast. It did seem to help because I think it was reducing inflammation, but not necessarily getting rid of yeast.
He has been dairy free for over two years now, but I am not sure if it has made a difference. A few times we gave him regular yogurt again or tried cottage cheese again. Maybe we will just bring it all back.
The GAPS diet has been the only interesting diet that does seem to have helped a lot of kids (and adults) but many of these things he is just not ready to eat.
- Focusing on fruits and vegetables: A 2016 study involving 122 people showed that eating fruits and vegetables can prevent a potentially harmful strain of bacteria from growing in the gut.
- Including probiotics: Probiotics contain many beneficial bacteria. One study suggests that eating probiotic yogurt may help lower blood sugar levels among people with metabolic syndrome.
In stage 1, the diet consists of:
- homemade meat stock
- boiled meat or fish
- well-cooked vegetables
- probiotics, such as fermented vegetable juices, yogurt or kefir, and homemade fermented whey
- ginger or chamomile tea with raw honey
- purified water
In stage 2, add the following foods:
- raw, organic egg yolks
- casseroles made with meats and vegetables
- fermented fish
- homemade ghee
In stage 3, add the following foods:
- sauerkraut and fermented vegetables
- GAPS pancakes
- scrambled eggs made with ghee, goose fat, or duck fat
- probiotic supplements
In stage 4, add the following foods:
- roasted or grilled meats
- cold-pressed olive oil
- freshly pressed carrot juice
- GAPS milkshake
- GAPS bread
In stage 5, add the following foods:
- cooked apple purée
- raw vegetables, such as lettuce and peeled cucumber
- pressed fruit juice
In stage 6, add the following foods:
- raw, peeled apple
- raw fruit
- increase honey
- baked goods sweetened with dried fruit
After completing the introduction diet, many people move onto the full GAPS diet.
2. The full GAPS diet
During the GAPS diet, avoid all grains, sugars, starchy vegetables, refined carbohydrates, and processed foods. This stage lasts 18–24 months but is individualized and may require less time for some.
Acceptable GAPS foods include:
- meat, fish, and shellfish (fresh or frozen only)
- fresh vegetables and fruit
- natural fats, such as olive oil, coconut oil, and ghee
- a moderate amount of nuts
- GAPS baked goods made using nut flour
The GAPS diet also recommends that people:
- use organic food as often as possible
- avoid all processed and packaged foods
- eat fermented food with every meal
- drink bone broth with every meal
- avoid eating fruit with meals
- combine all protein food with vegetables, which the theory says will keep body acidity levels normal
People can eat the following foods on the GAPS diet:
- meat stock (cooked shorter than broth and contains less glutamates)
- meats, preferably hormone-free or grass-fed
- animal fats
- fresh fruits and non-starchy vegetables
- fermented foods and beverages
- hard, natural cheeses
- coconuts, coconut milk, and coconut oil
- dry wine
- white navy beans
Foods to avoid on the GAPS diet include:
- sugar and artificial sweeteners
- alcohol, but adults can have a glass of dry wine occasionally
- processed and packaged foods
- grains such as rice, corn, wheat, and oats
- starchy vegetables, such as potatoes and yams
- beans, except white and greens beans
- strong tea
Sample GAPS diet meal plan
Start the day with one of the following:
- a glass of filtered lemon water and kefir
- a glass of freshly pressed fruit and vegetable juice
- GAPS pancakes topped with butter or honey
- one cup of lemon and ginger tea
- meat or fish with vegetables
- one cup of homemade meat stock
- one serving of probiotics, such as kimchi, sauerkraut, yogurt, or kefir
- homemade vegetable soup made with meat stock
- one serving of probiotics, such as kimchi, sauerkraut, yogurt, or kefir
Some children with autism should undergo ongoing screenings for apraxia, a rare neurological speech disorder, because the two conditions often go hand-in-hand, according to researchers. It’s estimated that one in 68 children in the United States has autism and one to two in 1,000 have apraxia.
Please be aware that just because a child with autism is nonverbal does not mean that he has apraxia; apraxia is not necessarily the cause of a lack of speech in a child with autism.
How might you be able to tell if this child is nonverbal because of apraxia, as opposed to the child being nonverbal because of autism? I would look for signs of oral-motor and limb apraxia. If this child’s apraxia is so severe that he cannot generate phonation at will, then you likely will see apraxia in other motor systems.
Childhood apraxia of speech (CAS) is a motor speech disorder. This condition is present from birth, and it affects a child’s ability to form sounds and words.
Children with speech apraxia often have far greater abilities to understand speech than to express themselves with spoken words.
The majority of children with childhood apraxia of speech will experience significant improvement, if not complete recovery, with the correct treatment.
Apraxia refers to the difficulty someone has initiating and performing the movements needed to make speech. This difficulty arises despite the fact that there is no weakness in the necessary muscles.
Childhood apraxia of speech rarely occurs alone. It is often accompanied by other language or cognitive deficits, which may cause:
- Limited vocabulary
- Grammatical problems
- Problems with coordination and fine motor skills
- Difficulties chewing and swallowing
Experts do not yet understand what causes childhood apraxia of speech. Some scientists believe that it results from signaling problems between the brain and the muscles used for speaking. Ongoing research is focusing on whether brain abnormalities that cause apraxia of speech can be identified. Other research is looking for genetic causes of apraxia. Some studies are trying to determine exactly which parts of the brain are linked to the condition.
Childhood apraxia of speech may be a part of a larger disorder a child has, such as:
- Cerebral palsy
- Certain mitochondrial disorders
- Neuromuscular disorders
- Other intellectual disability
There is not a single test or procedure that is used to diagnose childhood apraxia of speech. Diagnosis is complicated by the fact that speech-language pathologists have different opinions about which symptoms indicate the condition.
Most children with apraxia of speech benefit from meeting one on one with a speech-language pathologist three to five times a week. They may also need to work with their parents or guardians to practice the skills they are developing.
Therapy for childhood apraxia of speech aims to improve speech coordination. Exercises may include:
- Repeatedly practicing the formation and pronunciation of sounds and words
- Practicing stringing together sounds to make speech
- Working with rhythms or melodies
- Using multisensory approaches, such as watching in a mirror while trying to form words or touching the face while talking
Speech language therapy is the main treatment for apraxia of speech. SLPs often use a variety of methods to treat it. Your child’s SLP might try methods such as:
- Articulation or phonological therapy
- Adapted cueing technique
- Orofacial myofunctional therapy
- Prompts for restructuring oral muscular phonetic targets therapy (PROMPT system)
- Biofeedback treatments
Apraxia is a condition that interferes with an individual’s ability to develop, execute, and sequence motor movements. The neurological impairment has three forms:
- Motor involves movements in the hands or the entire body.
- Verbal involves the muscle movements necessary for speech.
- Oral involves movements not associated with speech and articulation such as puckering the lips or sticking out the tongue.
Subdivisions of Apraxia
- Apraxia, Buccofacial
- Apraxia, Classic
- Apraxia, Constructional
- Apraxia, Ideational
- Apraxia, Ideokinetic
- Apraxia, Ideomotor
- Apraxia, Motor
- Apraxia, Oculomotor
Limb-kinetic apraxia is the inability to make precise or exact movements with a finger, an arm or a leg. An example is the inability to use a screwdriver notwithstanding that the person affected understands what is to be done and has done it in the past.
Ideomotor apraxia is the inability to carry out a command from the brain to mimic limb or head movements performed or suggested by others.
Conceptual apraxia is much like ideomotor ataxia but infers a more profound malfunctioning in which the function of tools is no longer understood.
Ideational apraxia is the inability to create a plan for a specific movement.
Buccofacial apraxia, (sometimes called facial-oral apraxia) is the inability to coordinate and carry out facial and lip movements such as whistling, winking, coughing etc on command. This form includes verbal or speech developmental apraxia, perhaps the most common form of the disorder.
Constructional apraxia affects the person’s ability to draw or copy simple diagrams or to construct simple figures.
Oculomotor apraxia is a condition in which patients find it difficult to move their eyes.
Apraxia is believed to be caused by a lesion in the neural pathways of the brain that contain the learned patterns of movement. It is often a symptom of neurological, metabolic, or other disorders that can involve the brain.
Apraxia is caused by a defect in the brain pathways that contain memory of learned patterns of movement. The lesion may be the result of certain metabolic, neurological or other disorders that involve the brain, particularly the frontal lobe (inferior parietal lobule) of the left hemisphere of the brain. In this region, complex, 3-dimensional representations of previously learned patterns and movements are stored. Patients with apraxia cannot retrieve these models of stored skilled movements.
Oculomotor apraxia is a dominant genetic trait. The gene for this condition has been mapped to chromosome 2p13. Each chromosome has a short arm designated “p” and a long arm designated “q”. Chromosomes are further sub-divided into many bands that are numbered. For example, “chromosome 2p13” refers to band 13 on the short arm of chromosome 2. The numbered bands specify the location of the thousands of genes that are present on each chromosome.
Genetic diseases are determined by two genes, one received from the father and one from the mother.
Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary for the appearance of the disease. The abnormal gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from affected parent to offspring is 50% for each pregnancy regardless of the sex of the resulting child.
Some cases of apraxia are congenital. When a child is born with apraxia it is usually the result of malformations of the central nervous system.
- Behavioral: ASSIST
Integral stimulation based treatment (“watch me, listen to me, say what I say”) for CAS that is based on principles of motor learning and neuroplasticity and includes a systematic approach to adaptive practice. Treatment includes a focus on prosody, use of visual, tactile, auditory cues, slowing speech rate, and large amounts of practice.
- Therapy is delivered in a face-to-face format. The therapist uses picture stimuli, verbal modeling, feedback, reinforcement, forward-chaining to increase verbal production. For speech errors that occur, the therapist uses modeling, feedback, reinforcement, simultaneous production, articulatory instruction, and repeated practice to improve articulation.
- Transcranial Magnetic Stimulation (TMS) Non-invasive brain stimulation, high frequency repetitive TMS delivered in 10 sessions over a 2-week period.
- All patients will see a Neurologist for a neuro exam and consult, see a Speech Pathologist for assessment of speech and language skills, see the Study Coordinator for neuropsych testing (brief tests of thinking, memory, visual spatial skills, etc), undergo an MRI of the brain and a DaTscan of the brain.
It’s Friday and our first week of homeschool is done. I teach L downstairs on M/W/F, and grandmother M teaches him T/TH. (That means we alternate being with G on those days so it’s been really good for both boys.) After L makes his bed, eats breakfast and brushes his teeth, we head downstairs to the “classroom” and get to work. We are there until the normal time that school would end at 2:20. During our day we have certain subjects we study, along with quiet reading time, reading aloud, learning Latvian with M, math, recess, writing and things he chooses like researching coins.
This is all going so well thanks to how he already been “set up” to learn all of these years. L is already patient and good at listening and following a schedule. On the first day we started homeschool, L was super concerned about the schedule and following it.
As a guide, I printed out the expectations that a first grader should know by the end of the year. As I carefully went through the items, I could see the parts that Ms. B already worked on and I could confidently make many of the checkmarks already. For the rest, we are gradually touching upon everything that needs to be worked on. We’re also working on skills for second and third grade since everything is so connected.
A great way to do all of this is of course, worksheets. And how do you get them? There’s a lot of free ones you can print, but we have had some extra help! My aunt was a first grade teacher and her daughter followed in her footsteps and is also a first grade teacher. They have been sending thoughtful worksheets in the mail to L for fun since last year. It all began with some Thanksgiving and Christmas activities. Now during our isolation, they sent over the real deal – we have a ton of sheets for telling time, counting money and more. Thanks Aunt Vickie and Miss Jenny!
For everything else, I ordered some extra ink and got to printing. A handful of sites we have really found useful so far are:
Dad’s Worksheets https://www.dadsworksheets.com/ This site has anything and everything you might want for all ages, from math to different kinds of lined paper. Thanks, DAD!
A Well Spring of Worksheets https://www.awellspringofworksheets.com/ This site is just for Kindergarten, but I found that having a membership was well worth it for this highly organized collection of worksheets. There are many worksheets for handwriting which L needs a lot of help in still especially for lowercase. I also like the reading comprehension sheets. It doesn’t hurt to go over concepts that already make sense and fine tune them.
When L was in Kindergarten I learned about Teachers Pay Teachers https://www.teacherspayteachers.com/ when I would look for things to help him, and also G for worksheets and schedules for kids with autism. Many things are available to download for free – and just from browsing through the categories you can get a lot of ideas.
I also decided to sign up for a month to Education.com – their site is really easy to use and has hundreds of worksheets divided by grade and subjects. So far we have printed most worksheets from here. For me it gets pretty addicting to choose and print them every week. I did have to order more ink today for our little workhorse – the HP DeskJet 3755.
Another cool thing I found was a site called Vooks which I could sign up for free for a year as a homeschooler. They are awesome videos of children’s books. The library is kind of limited so we will be done watching the interesting ones for older kids pretty soon.
Our local library system offered resources too. Tumblebook Library has so many free items to download.
Overall, it has been easy thanks to L’s attitude. He is just a studious guy (most of the time!) and wonderful learner. The best part of today is that for reading aloud, instead of reading a story, we watched Marc Brown read a story from his own home in isolation. (Marc Brown created Arthur and it’s still L’s favorite show.) We turned the lights off and watched him read and it was such a special moment. While there are troubles in the world right now, and we aren’t sure when we’ll go back to school, we are all enjoying this quality time with L and giving him so much attention that he deserves. I’ve enjoyed figuring out what to work with him on, what subjects he needs help in next, and seeing how happy he is to work at his own pace.
I was going through photos and found an old screenshot of a kindergarten checklist before L went to kindergarten. I remember when I read this and didn’t really think much about it. But I kept it to refer back to. Turns out, almost three years later, I am reading it again and thinking about Gavin.
Raising an eager learner is the goal, and it can be achieved easily through play and day to day activities. Here are the top readiness skills that kindergarten teachers look for:
- Excitement toward learning – I can say that G is definitely excited to learn things and wants to.
- Talking about thoughts and feelings – This is something that does not yet make sense to G.
- Listening to others – In the past two years, this has improved greatly for G.
- Desire to be independent – He definitely has this!
- Playing well with others and taking turns – G works on this in therapy, and overall has a lot more patience now. But this item is something he needs a lot more practice with.
- Following simple instructions – This is also so much better than a year ago!
- Ability to hold and use a pencil or crayon – G was really, really good at writing letters and all numbers last summer and the year before that. He lost this ability in the past year and we have got to get it back.
- Recognizing numbers and letters – This is 100% already accomplished.
If I read this checklist just one year ago, I would not have wrote the answers above. He has changed a lot and I am happy to say that having 5 of 8 items basically checked is wonderful. I am very confident if we can take care of the other items that he can be ready for kindergarten, with assistance, for fall of 2021.
For a couple of years, G does not sit at the breakfast nook. Something about the way the cushions move, or how high the benches are – he doesn’t want to sit here. Even though his legs are so long now, and so close to the floor at the edge of a cushion, he is really terrified of being here. When we try to sit him on the bench, his body becomes stiff as a board and he grabs us, fingers digging into us for dear life. Today we got him to sit with me to eat lunch there, finally. But now we have to do it everyday for lunch until he can sit without crying. By looking at these pictures below you wouldn’t think he was screaming about being there just moments before. After we were done eating he pointed to the floor to ask to leave and scooted right off. About an hour later I asked him to sit there again and he ran away. Our goal is to have him sitting here with us all the time, happy as a clam, climbing out, looking out the window, and feeling great. So here we go.
Here goes our 21 days of prescription Nystatin anti-fungal liquid. Still looking for the next one thing that might make a very noticeable change and unlock another door for G.
Day 1: 2/18/20: G started Nystatin 3 times a day
Through the next few days he started putting his his head upside down on the pillow in his crib. (Yeast die-off signs?) Still grinding teeth.
He started making loud short screams at times, unlike ever before. Kind of like quick yelps here and there. (Yeast die-off signs?)
As he falls asleep for a nap or at night, he will do this short scream a few times as well. It’s really loud.
Day 2: 2/19/20 —
Day 3: 2/20/20 —
Day 4: 2/21/20: G started touching the walls or the tables, as if he sees something like a pattern, and stares at it a while while kind of scratching the surface with his nails. He never does this. Still grinding teeth.
Day 5: 2/22/20 —
Day 6: 2/23/20: Took G on a long car trip with his older brother (1 hour 30 minutes each way) He did exceptionally well, was never mad or sad, and contently looked out the window.
He still did not want to walk when we got to our destination, because it was so windy, but he tolerated being in the stroller for a long time, as usual.
The trip home was wonderful and quiet most of the time. There was hardly any stimming or stereotypy. He also did not get upset and cry when I didn’t play the songs he usually wants in the car. Instead I just played a lot of relaxing music that he and his brother could both enjoy. I was overall just really surprised by the trip.
When we got home he ate and went for a nap. He was in the crib at around 4:20 and did a lot of the quick screams. Put his head upside down many times. Fell asleep at 5:45, grinding teeth, and woke him up at 6:30.
It really seems like he is having symptoms of yeast die off. So I started reading about how to make gluten free and yeast free bread again. The bread he always eats (Franz multi-seed gluten free bread) is made with yeast. Also want to finally get rid of the Goldfish. Finding a yeast free cheese cracker is difficult. I like that he eats something that is crunchy – if we take crackers away, everything he eats is very soft. I’m afraid he would reject new foods in the near future that are crunchy if he forgets what it’s like to chew that way.
Day 7: 2/24/20: G slept nine hours last night. He had a great, calm morning. When he woke up, he was putting his head upside down on the pillow. Then as usual when we go to therapy he tries to hide his eyes under his beanie or behind his hands, and walk with his eyes covered up, as if it’s too bright outside or he doesn’t want to look where he is going. He also leans on me, falls on me, like being drunk. It’s kind of like when he doesn’t really want to go somewhere, but is just being agreeable, he acts wobbly and puts his face into my leg or into my jacket and walks super slowly. When we finally got downstairs at therapy, he put his backpack on the hook and began to walk normally again and not hide his eyes anymore. At home in the afternoon he was being frustrated a few times about wanting Goldfish instead of puree. But when he went to the crib at 4, he was asleep for his nap by 4:30.
Day 8: 2/25/20: G is still doing that “drunk” kind of thing, hiding into my legs, not watching where he is going, and laying and climbing in different ways. But there’s something different about him again today besides this wobbly, explorative stuff. He is more focused and calm, less stereotypy until he watches videos. Napped today and did not want to wake up at all, as usual but he was even more of a little log. When he finally got up, I noticed his hands were really cold and almost damp.
Day 9: 2/26/20: Still grinding teeth. Limp noodle G is even more so. He walks like he is wet spaghetti. I finally figured out how to describe it – he is mostly doing it during transitions. If he has to go downstairs, upstairs, get ready to go to the car, or go to the bathtub, he becomes limp as he walks, it’s hard to get him to walk, and he wants to hide his entire face under his hat or my jacket. Afternoon update: Therapist who was with him for 2.5 hours during the afternoon said he was very wobbly and laying on her. The other therapists this week haven’t noticed it so today must have been pretty intense for that behavior. She said his focus time was short the later it got in the afternoon. When he got home he was very jumpy and shook his head fast a lot (like the saying no motion). He never shakes his head.. Later he took a nap but it was very short and he woke up crying, then he was screaming and wanted water. I emailed one of his doctors and they said to stop the Nystatin. I asked them if they think the yeast died off already? Still waiting for reply. If all these wobbly symptoms were temporary, I would want to complete the 21 day treatment and then stop. But if did keep acting like these for the next few days, and shaking his head, and throwing his head back into the pillows, I would start to wonder myself if I should stop. I can’t believe Nystatin is having such a big effect on his behavior. He is still so happy and loving, and never angry, just a few screams here and there, but this strange behavior must mean something.
Day 10: 2/27/20: First day without any doses of Nystatin: He was definitely less wobbly and still very calm. He had a lot of trouble hanging up his backpack and jacket at therapy. When I picked him up, his therapist said he was not wobbly or leaning on anything today. He had a great day and almost ate mashed potatoes. At home he was leaning into me and hiding again on the way to the front door. Put pau d’arco and q/b into his lunch. At naptime, he went into the crib around 4:10 and at 5:25 was still jumping and putting his head into the pillow with his bottom up in the air over and over, looks like he is squeezing his head into the pillow. Grinding teeth often but not all the time. The different part about today’s nap is that he is holding his head on the pillow for a minute at a time with his bottom in the air. He never does it for longer than a few seconds before switching up positions. Update: he did not fall asleep, took him out of the crib and it turned out that he had a #2. It’s a really fluffy kind, and he also did it before nap. So I guess he couldn’t hold it.
Day 11: 2/28/20 Today G was still acting very sleepy. Mimi fed him downstairs for breakfast and he was laying down on the couch and could barely eat. Went to therapy and he was hiding his eyes, not walking, and very spacey. Asked him to put his backpack on the hook and he was just looking off toward the walls and the windows. When I picked him up he was better. Lunch was quercetin/bromelain, pau d’arco, leucovorin and 1/4 tsp beef gelatin. At home we ate dinner at the table on a chair, and he stayed the whole time and did not get up. He asked to get up three times by pointing into the kitchen but did not get mad when I told him no. Bath time was really amazing and funny. He was putting the bathcloth on his tongue over and over, I think he feels the tickles. He is exploring his mouth more than ever. I think it’s a good sign he might talk. Many sounds and babbles tonight. Still grinding teeth. It looks like tomorrow he might be almost out of his spaceyness, because tonight was pretty close. He had pau d’arco, quercetin and bromelain at lunch. Have not heard back from doctor about when to try Nystatin again or what to do.
Day 12: 2/29/20: G was much better today and not acting very sleepy at all. More active, and back to normal but better than normal. No Nystatin, quercetin/bromelain or pau d’arco today at lunch. Still grinding teeth. Took two hours to take a nap today.
Day 13: 3/1/20: G slept very well. He had a calm and active morning. Went to the park and was able to get him to come out of the stroller and touch flowers and numbers. Very happy mood. Gave him one dose on Nystatin at lunch, quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, but no pau d’arco. Went for a nap at 3 and fell asleep 4:30. Naps are still taking so long but think he needs them.
Day 14: 3/2/20: G had a good sleep and a good day at therapy. He did try to grab the therapist’s face a few times when he was frustrated. At lunch he had quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, and pau d’arco. He did not take a nap today, he was too alert and awake. He was very happy to come out of the bed and was running around. Just very happy in general.
Day 15: 3/3/20: Gavin woke up at 5:30 AM and was not in a great mood. Today was not very great. Lunch was leuco, pau d’arco, q/b, cs in water before nap. He did take nap. Night was better. Tired today, short update.
Day 16: 3/4/20: G had a good morning, had to wake him up for breakfast He went without me into the clinic today. When he got home, I decided enough is enough with his teeth brushing. I sat him down and got the toothbrush and said “We’re gonna brush your teeth now.” I brushed them all over and he tolerated it. I felt bad that his gums started bleeding by his front teeth. He really needs it. Lunch was calcium/d, leuco, q/b, cs in water. He went for a nap at 4:30. Grinding teeth.
Day 17: 3/5/20: G had another good sleep and slept past wakeup time again and had to be woken up. He wa super happy and went into the clinic again without me. He gave me a great kiss goodbye and walked right in. They said he had a good day, high energy. It’s 4:50 now and he is trying to nap. (Fell asleep 5:30.) I have felt pretty tired lately and a little lost on what to do next. One of my oldest friends told me today that her son was diagnosed today with high functioning autism, Asperger’s. I just couldn’t believe it. I didn’t want to say “sorry” because there’s nothing to be sorry about. It’s just a struggle sometimes with any level of autism. I told her I am here to talk and that now that she knows it will be easier to figure out what’s next. Lunch was leuco, q/b, cs in water. Grinding teeth less. Took a preschool workbook into the bed with him. That was interesting. Switched it out for Owl and he didn’t cry about it.
Day 18: 3/6/20: G woke up at 6, had great day school, ate all of his food for the first time in a year, had to leave early because a therapist left, went to bed at 3 and fell asleep at 4. No supps in lunch except leuco. Less grinding of teeth.
Day 19: 3/7/20: Forgot to write today, just had a busy day.
Day 20: 3/8/20 Today G slept in a bit because of daylight savings, and he had a really wonderful day. Lunch was pau d’arco, leuco, and q/b. Before lunch he was outside playing wonderfully and running around, went down the slide about six times, and didn’t ever go to the backdoor, or get upset. I think something is really healing inside his gut!
Day 21: 3/9/20 Today would have been the last day of Nystatin. My guess is that G would have been in rough shape. It was really doing something inside of him once the work was complete I think. He had a good morning and slept until 8:30. Wow! He was very alert on the way to therapy, but started his “sleepy lean” when we were walking. I look forward to seeing how they think his day went.
This feels a little off topic, but a family has to be healthy to keep the kids healthy, right? Lately, meal prep has been what we do to make sure we do not over indulge during the day or night. Plus we are now eating a bigger variety of vegetables than ever. Now if only the kids can get into the groove, it will be awesome. But – one step at a time. Here are the latest meals. If you have any ideas for new meals, let me know!
Over the years when I would see people post online about meal prep, it looked mostly complicated and time consuming. But thanks to finally getting organized, it’s a piece of cake to do all this cooking on one morning during the week! The feeling of knowing you are done with all of this is just awesome, so we can do other things besides cooking.
So how did I get organized? The first reason this is so easy is because of Imperfect Foods. We have used them ever since the company arrived in Portland. Mostly the vegetables and fruits I ordered were always for the kids, especially G because of his purees packed with nutrients for his picky diet. But later on, as Imperfect added new categories like dairy and canned goods, I get not only different vegetables delivered (like snap peas, jalapeños, sweet peppers, herbs, etc.) but I can add canned beans, cheeses, sauces, and new things to try like tofu nuggets or vegan meat replacements. We are basically on a new food journey all the time thanks to them. The best part (knock on tofu) is that ordering is so easy, and their deliveries have always been on time. I have nothing but positive things to say about Imperfect. Just awesome! Check out the latest order to see what I mean about the prices and variety:
Your order details for Wed, February 26th, 2020
|Organic Italian Parsley Bunch (1 ct)||1||$1.19|
|Organic Lemons (1 lb)||1||$2.03|
|Organic Potatoes (1 lb)||1||$0.79|
|Organic Green Beans (Organic Green Beans) (8 oz)||1||$2.49|
|Organic Mini Sweet Peppers (1 ct)||1||$4.25|
|Organic Carrots (1 lb)||1||$1.07|
|Bitchin’ Sauce – Original (8 oz)||1||$4.99|
|Nasoya Organic Tofu Vegetable Dumplings (9 oz)||1||$4.99|
|Conventional Zucchini (1 lb)||1||$1.99|
|Cento Black Beans (15.5 oz)||2||$1.98|
|Cento Cannellini Beans (15.5 oz)||2||$1.98|
|Cento Chickpeas (15.5 oz)||1||$1.49|
|Organic Rainbow Chard (1 ct)||1||$2.15|
The second reason that made this all so helpful is that I just make sure I always have the main staples on hand. There’s always jasmine rice stocked in our house and frozen cauliflower rice, spiraled carrots, edamame, etc. from Trader Joes. Also having frozen chicken or other frozen meat is key too. But I also buy fresh meat and marinate it right away, then I know I have to cook it in a few days and get the meal prep going again.
The best part? Daniel already lost about 15 pounds, and I’ve lost 10.
March 2 – Week 5 meals:
March – Week 6 Meals:
Update: April 13
Since the corona shutdowns, I didn’t update here but meal prep kept on trucking.
Have we lost weight despite going out on walks a lot? No.
Have I learned to cook better and faster? Yes.
I am going to try to get it all to come together in the next couple of months.
May 1 Update:
It’s been quite a while now, since the end of February, many, many meals have been.
A year ago today, I was pretty down. This is the post I wrote where I mentioned how G was scratching us, sleeping poorly, among other things.
While no big miracles happened with his stem cell injection, or any of his supplements (or the break we had from them all), I am happy that we have still tried a lot of new things in the past year. I am feeling more comfortable – and less down.
We still have a ton of supplements and medicines in our cereal cabinet. From cromolyn sodium, to TRS spray and our newest addition of nystatin, we are getting somewhere, and G is happier and better than ever at this very moment. I kept asking myself, is it really true? The answer is yes.
When I dropped him off at therapy today, he was strongly seeking my approval when he put his jacket on the coat hooks. I am focused on basic life skills lately, just so he can take care of himself, and he usually gets upset when he can’t get his hood on the hook. Today when he finally got that coat on the hook, he got super close to my face, stared deep into my eyes and waited for me to say good job. He smiled and ran off happily to look for a toy. It was a big defining moment of how he really is changing. And for that today, I am happy.
Plus spring is coming. He needs sun on his face and long walks again. We all do.
January turned out to be a difficult month. I wouldn’t say it was bad, or hard – just difficult. G started wearing the foot orthotics in the first week of January. He eased into it but then started wearing them all day while at therapy. I really didn’t think they bothered him. He would even point at the orthotics when at home and want to put them on. All the signs of him liking them were there. But it really seems like they were bothering him and blocking his sensory input. He just needs to get up on his toes. It’s an outlet for him. He couldn’t and he was getting angry. He was hitting and trying to scratch us. He was poking his therapists, trying to hit them, trying to hit other peers, and getting so upset about many little things. He could barely even eat dinner some nights. None of us knew what was wrong. We were starting to get really stressed and really down. I decided to have him just stop wearing the orthotics as a first step. In the first day of him not wearing them to therapy, he became happier. Within the next few days, he was almost back to normal. And now almost two weeks later, he is so much better. He’s so much better that the past weeks are a blur now. The fact we had to have a behavior meeting at therapy is a blur. I am so relieved.
This whole thing made me rethink his supplements. He was not taking anything extra in his food, pretty much, for almost a year. I took a break from dissecting all of that information and from dealing with all of us hiding things in his food. But now I am back on track and have the new regimen. It seems to be making him even more calm, focused and happy. Will keep building on this and see where it takes us.
Morning: (1/2 tsp) Leucovorin in yogurt
Afternoon: (1/2 tsp) Leucovorin, (1) pau d’arco, (2) quercetin and bromelain in puree
Water with fractionally distilled aloe vera and cromolyn sodium before nap
Dinner: (1) zinc picolinate, (1) calcium in yogurt
Biochemically in the body, folic acid supports cellular perception and response, methylation processes and many enzymatic reactions. It is also linked to maintaining healthy homocysteine levels, which supports cardiovascular health.
To be active in the body, folic acid has to be reduced twice by folate reductase enzymes, then converted to tetrahydrofolate, after which a methyl group is added to the tetrahydrofolate. In some individuals, the use of natural folinic acid may be more beneficial than folic acid, because folinic acid already has attached four hydrogen and one methyl group, thereby shortcutting the complicated biochemical process.
Why pau d’arco?
Pau D’Arco is a tropical tree that has been used by natives in the Amazon as a folk remedy for hundreds of years. Pau D’Arco is an immune stimulant and helps keep the gastro-intestinal system healthy, making it less hospitable to yeast, parasitic, bacterial, fungal and viral infections. Studies have shown Pau D’Arco to be anti-inflammatory and anti-oxidant, as well.
Why quercetin and bromelain?
Quercetin helps ensure appropriate immune response, inhibits formation of free radicals and promotes circulatory health in part by supporting the integrity of small blood vessels.
Bromelain complements quercetin for appropriate immune response and cardiovascular health, while also promoting joint comfort. (Bromelain may enhance the transport of the bioflavonoids (like quercetin) across the intestinal membrane.)
Quercetin Bromelain supplies the flavonoid quercetin extracted from seed pods of the Dimorphandra mollis plant. Flavonoids are potent protective nutrients found in many plants and foods. Bromelain is an enzyme derived from pineapple.
In autism with possibility of inflammation or histamine problems, Quercetin functions on an antioxidant level to reduce damage and irritation caused by free radicals while suppressing histamine response – the body’s reaction to allergens. Bromelain functions on an enzymatic and protein level by limiting the action of metabolites and neutrophils on inflammation.
Why zinc picolinate?
From this article: International studies have found that normally there are high levels of zinc in the brain, and brain cells are regulated by zinc, but that zinc deficiency is prevalent in autistic children.
“Research using animal models has shown that when a mother is given a low zinc diet, the offspring will be more likely to display autistic associated behaviours,” she says.
“Our work is showing that even the cells that carry genetic changes associated with autism can respond to zinc.
“Our research has focussed on the protein Shank3, which is localized at synapses in the brain and is associated with neuro-developmental disorders such as autism and schizophrenia,” she says.
“Human patients with genetic changes in Shank3 show profound communication and behavioural deficits. In this study, we show that Shank3 is a key component of a zinc-sensitive signalling system that regulates how brain cells communicate.”
Why cromolyn sodium?
Cromolyn sodium works by preventing the release of substances in the body that cause inflammation. Cromolyn sodium originally derived from a healing herb called ammi visnaga. Among its other uses, ammi visnaga traditionally controlled kidney stone pain. Its ability to open the airways intrigued early researchers. They eventually identified the plant’s active ingredient: cromolyn sodium. Cromolyn sodium is known to prevent mast cells from triggering the immune response.
Why fractionally distilled aloe vera?
Aloe vera contains nearly 200 biologically active components, including polysaccharides, vitamins, enzymes and minerals. It helps balance the stomach’s pH levels and promotes healthy bacteria growth.
Just because we need to get that back on track as well as Vitamin D, soon after.
As for the orthotics, he is already on a program at therapy where he is told to do “flat feet” so we will continue with the verbal prompts and see how much better he gets with it. But really for right now it’s not a big concern anymore. If he needs to do that sometimes, then he just needs to until we can find another way for him to get sensory input.
March goals? Test G to see if he has folate receptor autoantibodies. If he tests positive for those, it means that he definitely is benefiting from taking leucovorin (folinic acid) and should continue. Some studies show that as much as 60%+ of people with autism have these autoantibodies.