Tuesday, April 28, 2015

Jett's Progress

Even though all of our kids share the T21 diagnosis, each of our kids is created uniquely. About half, like Jett, have had heart surgery... most, like Jett, have hypothyroidism... and others have extra challenges that Jett has not had to face.

With that said, I do believe that it's because of proper intervention — nutritionally, therapeutically, medically and environmentally — that Jett has been able to thrive as he has. I also support Jett's healthy diet with supplements.

So, I share these videos and information to spark inspiration, not frustration. This is what Jett has been able to do with the supports, strengths and challenges that he has. Your child's victories will be different. Your child will reach some milestones more quickly than Jett and he will have reached some more quickly than your child. I look forward to rejoicing in your child's victories and to give support with your child's challenges.
 

Jett's Milestones


The cutest pumpkin in the patch! 20 months
Jett rolled over at 5 months and drank from a straw at 6 months (the day before his heart surgery). He said his first meaningful word at 8 months, his first two-word sentence at 11 months (but didn't again until about 17 months). This post explains what I did to support his speech

At 10 months old, he no longer went #2 in his diaper. We practiced Elimination Communication. At 12 months old, he went #2 in the adult toilet for the first time. Here's how we supported potty training.
 
At 13 months old, he was four-point crawling after many months of army crawling, which is important for development. Here's what you can do to support proper crawling

At 14 months, he pulled himself up to lean against me and furniture and could walk a few steps when assisted (just as a test).  

At his 16 month speech evaluation, his language skills, both receptive and expressive, were deemed "average for his age"! At 16 months, he was a master stair climber (on hands and knees) and has a great love of words and books. Here you can see Jett pretending to read at 16 months.

At 17 months, he started sight reading! The words he first could recognize were: craaaaack, gulp, hug and whoosh. (I guess that reveals a little about his fun personality since all but one word is an onomatopoeia. He didn't always say the word, but loved to hear you read it out loud. Oh, and when he pointed to "hug," he expected you to hug him.) Here's a video of him reading at 18 months: at my husband's blog. And another of Jett reading 9 words in 1 minute 40 seconds. This post explains what I did to support his reading skills.

At 21 months, he has started to sound out words; "bus" was first. After that, he attempted to read any and all words out loud. It's amazing to me! It was so fun and rewarding to point to a word while I'm reading and hear him joyfully pronounce it. (A favorite book to read with me at this age was Whoo Goes There?) Also, this month, he gave me his first hug and kiss (after taking NeuroProtek). And it was the first time he really gave me good eye contact.

Here's Jett Reading Out Loud at 23 Months.

At 24 months, he could do the large-pieced wooden puzzles (like Melissa & Doug brand) on his own.

At 25 months old, Jett read a whole book out loud, by himself for the first time. It was 27 pages long — The Eye Book by Dr. Seuss. It's late kindergarten level.

At 27 months, he sang "Twinkle twinkle little star, how I wonder what you are" completely on his own (just that stanza) and I hadn't been singing it at all that day either! So, although his expressive language (words coming from his own head and not mimicking) does need work, it is coming along nicely.


At 28 months, he loved to explore the house and get into everything he could. His favorite things to play with were my purse, the contents of the grocery bags, the utensils from the dishwasher and the sandbox. (Yes, he had toys — I promise! He still loved his magnadoodle.)  He has been using his potty for #2, since about 11 months old (it happened before we realized it so we're not sure when this started). At this time, he would tell us when he's hungry ("hungry" "bite" "piece" "food" and "eat"), what he wants to eat ("beans", "rice," "soup", "pizza" [gluten and casein free], "yogurt", "avocado" and "chicken" most often), when he's thirsty ("cup," "drink," "thirsty," "milk," "sip," "water," "juice" and "coconut [water]"). And he lets us know what he wants to do like "outside," "book," "bath" and "computer"  with his requests for "Mary Poppins," "Readeez" and "Winnie da Pooh" about 250 times a day. And he tells us when he's "hurt", "happy" and "hot." He tells us to "hurry" and "stop it." He also says "I love you so much!" but not that many other phrasesfrom his own head.

Jett could recognize and name numbers 0 to 100. (He says "ten-ten" for one hundred, for some reason.) He does count with me, but I have no idea if he has a concept of numbers yet. (Maybe he understands one, two and three? He seems to get those right...) He does know triangle, square, circle, rectangle and oval. This is what we did to support his math skills

At 33 months, he uses such sentences spontaneously and appropriately as: I dropped it! No, thank you. This is cold/soft/Brittany, etc. Where's the pillow? Mommy sit! I got it! Hmm let's see. Mommy…Daddy… Jett...together… family! He now can sing over 50 songs while they play and sometimes on his own, just from memory. (Most impressive is "Lordly is the Life I Lead" from Mary Poppins.)
He started to verbally let me know when he has to go #2.
And he can do an 8 piece jigsaw puzzles on his own without too much frustration.

At 34 months, he knew the concept of 0-10. He says "empty" to explain "zero." And he knew all his shapes, even complicated ones. I put both hands together and said, "a heart" and he tried to do it and said, "a polygon!" Late into his third year, Jett could also count by tens, identify patterns of 3 or less, sort and classify like items and add and subtract physical objects (not on paper, with symbols).

At 36 months, he enjoys activity magazines such as Highlights' High Five or NWF's Wild Animal Baby magazine that has stories, I Spy and cooking and craft activities. Yesterday, he said: "There's a mouse. A mouse goes 'squeak, squeak, squeak' everywhere!" He also enjoys his Pre-K worksheets where he loves to practice writing using a dry erase marker. He now substitutes lyrics to change up songs and make them express what is going on that day.

Jett stood independently and walked the same day, at 3 years old. He had a previously undiagnosed spinal issue. Once it was addressed, he stood and took his first tentative steps the next day! See Walking and Children with Down Syndrome to learn what I wish I would have known!

His auditory processing reached a level 3 at 3 years, 3 months. At 3 years, 4 months, he said his first 6-word sentence (that he made up and that I'm aware of): "No one will sing the blackbird song!" (It was late and we were too tired to indulge him.) 

Video of Jett, three years old, reading a word in English, translating it to Japanese and then spelling the word using hiragana, the Japanese alphabet: https://www.youtube.com/watch?v=llDeNMBSdEA

Jett, 4 years old
At 4 years old, Jett went through 5 hours of testing before he started 4K and he did not qualify as having an intellectual disability nor did he need speech therapy. He reads at a 5th grade level with comprehension at 2nd grade. No, these results are not typical -- not even for a neuro-typical child!

At 4 years old 1 month, we have such conversations as:

Jett: What's this? (referring to the song that is playing from The Jungle Book)
Me: It's 'I Wanna Be Like You'.
Jett: Noooo... Is this jazz?

another

Aunt Suzie: What are you doing?
Jett: (playing air guitar wildly) I'm singing the blues!
Me: The blues? What other kinds of music is there?
Jett: Reggae... Classical... Hip Hop... Salsa…

A video of Jett spelling at 4 years old, it was an off day.

Here's a video of Jett reading. He chose "An Alphabet of Dinosaurs." You'll see why it's hard to get a good video... 

The book has a Lexile® Measure of 830L, which means that the average 4-5th grader reads at that level.
At 4 years old, Jett got tested through the local school district and the school psychologist was excited to tell me that Jett could do all the math, including adding and subtracting (using pictures and manipulatives -- but the math "sentences" like 2+2=?, he didn't get all of those right, but he did get some right!)

Here is Jett right after he turned 5 years old, doing a little PSA for World DS Day. Turn up the volume and turn on the subtitles. 

Since Jett is so short, he just starting going #1 standing up at 5 years old while standing on a stool. (He's the size of a 3 year old because we haven't been able to get him on growth hormone treatment yet.) He's rather proud of this, so I had to include it. :)

He's able to write all of the letters of the alphabet independently, using the magna doodle. It has a very smooth surface that is easier to use than paper and pencil. He knew them all very early, but writing is his biggest challenge. Here's what we did to support his handwriting skills.


At 5 1/2 years old, Jett wrote his first word on his own -- thought of it, knew how to spell it and wrote it. It was close to the end of summer and I had a local teen come by to work with him on his handwriting -- just through certain physical activities -- like playing tug of war and using the monkey bars -- not by having him sit down to write. And so I hadn't asked him all summer to write for me. Finally I got the Magnadoodle out and said, "Jett, will you write your name for me?" 

He said, "No, but I'll write Ludwig von Beethoven's name." And he took the pen and wrote the capital "L" very large in the middle of the screen with the small "u" and "d" next to it. He ran out of space so he put the "w" very big above the "L" and squeezed in the "i" but ran out of space. So he wrote the "g" all the way to the left of the screen. Of course, by that time, he had no room for the rest of Beethoven's name, but I was so excited! The first word he wrote completely on his own was "Ludwig". So very "Jett"! His fine motor skills are finally catching up to his brain!! I can't wait to see what he does next! (I did run to get my camera to take a picture of it but he erased it before I got back.)

At five, he taught himself all 50 states, all the names of the US presidents and the Greek alphabet. He's learning lots of Spanish and (with the introduction of antifungal) is becoming more social -- playing with peers. (He's very social with adults just not children.) He's even letting his 2 year old brother hug him.

Age 6 has been the year for his biggest creative and social gains. Upon introduction of fava bean extract and lotus seeds, Jett started to feel a whole range of emotions and even empathy. And with the addition of the QRI Cold Laser Home Program, his social skills have increased dramatically. He has made friends with his little brother and finally enjoys playing with him.


And here's Jett enjoying a conversation with Jonovin, a boy in his upcoming class, during a play date. Yep! Jett... Enjoying a conversation... with a friend... During a play date... Bye bye symptoms of ASD! Hello engaged childhood!

In this picture, he drew a Jabberwocky from Through the Looking Glass. (What we are reading before bed.) I'm happy he can have fun with crayons! (Both my husband and I are artists.)













I love this one! Looks like stained glass.
Jett loves cats.

Jett does a lot of these crayon paintings.

















This is the work/reading comprehension that Jett is doing in school. He dictated the answers rather than write them because it would take him too long to write it in the time allotted. This is the work that they pull Jett out of his classroom for since he's ahead of his neurotypical classmates.


 
Early in his 7th year, Jett has come out of his shell even more. He performed in his class circus as a tiger onstage with the dancing bears complete with loud music, face painting, singing, dancing and doing tricks! I asked Jett what he thought about being in the circus. He said, "It was crazy, fun, wild and different." He said being onstage was "cool".

video

My camera kept shutting off, but here is another part:

video

Friday, April 17, 2015

Lithium orotate

Too much lithium can cause an imbalance in the body in relation to potassium. High levels of potassium causes further imbalances which can lead to all sorts of issues. (See Update for details.) So I no longer recommend taking lithium.

Our Experience

I started Jett at 3 years, 10 months old on lithium orotate because of all the possible benefits to the brain. With only 5mg a day, the rest of his sound sensitivity and teeth grinding went a way! Yeah! (I'm now able to only give 2.5 mg and get the same results.) I knew that both issues were mineral related and so I had seen great results with magnesium alone, but once I added the LO, they went away completely. So now I can finally vacuum without him freaking out. I can use the blender, even when he's in the room! And we can go to parties without having to leave early or take him into another room or outside for awhile to decompress from the sound over stimulation. I haven't exposed him to fire engines... his worst sound sensitivity yet, though! But he's fine with his baby brother crying (after about three months, he was okay even without the LO.)

At five years old, every once in a while, in the middle of the night, I hear Jett grind his teeth for a couple of seconds, but that's it. (We sleep in the same room.) And if he misses his dose of either the LO or magnesium, the sound sensitivity comes back just as badly within a day or two. So, LO is one of his must-have supplements.

Important Update:

Jett has been on LO for a year and a half. During that time, the lithium has caused an imbalance with Jett's potassium level. This has caused an imbalance with Jett's potassium/sodium ratio which has caused an imbalance in his sodium/magnesium ratio which effects his adrenal function making it more difficult for him to deal with stress -- which I believe has caused an increase in his visual stimming. It also effects the calcium/potassium ratio which effects thyroid function. So, I've taken him off LO and increased his magnesium from two to three MegaFoods capsules an hour before bed. He did not grind his teeth last night! So, the increase in mag is working to keep the teeth grinding at bay.

Note: Before starting, make sure that your child's thyroid is functioning properly. According to this article (which is about prescription lithium, not lithium orotate), your child needs to have a complete thyroid test before starting LO treatment. Jett's thyroid was properly treated before starting LO and no thyroid antibodies were present. Once on LO, make sure your child gets thyroid testing every six months or yearly.


What is Lithium Orotate?

Most people have heard of lithium used as treatment for bipolar disorder, mania and depression. But that is lithium carbonate and lithium citrate -- the pharmaceutical forms of lithium, which are chemical extracts unlike the naturally occurring mineral, lithium orotate (LO).

LO is not a drug. Just like calcium and potassium, lithium is something that every human body requires for mental and physical health.

LO is different than the other forms of the mineral. Whereas pharmaceutical drug forms of lithium require high doses to get into our cells, lithium orotate is only needed in a small amount because about 97% of it gets into the cell. The other great news is that unlike its pharmaceutical counterparts, lithium orotate is non-toxic, safe, has little side effects, and works on 70% to 80% of people who use it.


LO's bio-availability allows the mineral to penetrate the mitochondria, glia and lysosomes within our cells. The mineral stabilizes these lysosomal membranes, slowing the enzymatic reaction that leads to many of the negative side effects of other forms of lithium salts.


Overview of Benefits

Brain Protection
Studies show that LO can actually rejuvenate and build the grey matter nerve cells in the brain by up to three percent. (Hey, I'll take that!)

Anti-Aging Effects
Small amounts of LO have been shown to offer anti-aging effects to the brain.

Neuroprotection From Environmental Toxins
LO has been shown to protect the system from numerous toxins, particularly in the grey matter of the brain.


Helps transport folate and Vitamin B12 into cells Without adequate Lithium, Vitamin B12 and Folate cannot get into cells and just floats around in the blood. Often due to a lithium deficiency, it may appear that the B12 level is adequate or even elevated B12 when in fact little of it is getting into cells where it is really needed.

Increases Lymphocytes
Lithium may increase the creation of more white blood cells -- lymphocytes.


Precautions

 
Too much lithium can cause an imbalance in the body with potassium. High levels of potassium causes further imbalances which can lead to all sorts of issues. So I do not recommend taking lithium.

 
Lithium should not be taken by those with renal or cardiovascular diseases, severe dehydration or exhaustion, sodium depletion, or in individuals using any form of diuretics or ACE inhibitors.


Also lithium works in balance with iodine. So, I do give Jett some iodine. I just put in a drop of kelp extract whenever I open a full bottle of water that the whole family uses. That way we all get a little bit throughout the day.
 

Side Effects

In one study, eight (of forty two people) showed side effects such as muscle weakness, loss of appetite or mild apathy.

Again, although no studies have been made on LO and the thyroid, other forms of lithium have been known to affect the thyroid so test for thyroid issues before and during use and keep the dose as low as you can.

 

Research on lithium in relation to Down syndrome

Lithium restores cognitive function in Down syndrome mice
Date: December 3, 2012
Source: Journal of Clinical Investigation
Summary: Researchers report that lithium, a drug commonly used for the treatment of mood disorders in humans, restores neurogenesis in the hippocampus, a part of the brain strongly associated with learning and memory.


Gene-silencing strategy opens new path to understanding Down Syndrome
Date: October 22, 2013
Source: American Society of Human Genetics
Summary: Inspired by natural process that silences one copy of female mammals' two sex-determining X chromosomes during embryonic development, researchers develop way to silence extra chromosome of Trisomy 21.


Scientists show proof-of-principle for silencing extra chromosome responsible for Down syndrome
Date: July 17, 2013
Source: University of Massachusetts Medical School
Summary: Scientists have established that a naturally occurring X chromosome "off switch" can be rerouted to neutralize the extra chromosome responsible for trisomy 21, also known as Down syndrome, a genetic disorder characterized by cognitive impairment. The discovery provides the first evidence that the underlying genetic defect responsible for Down syndrome can be suppressed in cells in culture.


Experimental compound reverses down syndrome-like learning deficits in mice
Date: September 4, 2013
Source: Johns Hopkins Medicine
Summary: Researchers have identified a compound that dramatically bolsters learning and memory when given to mice with a Down syndrome-like condition on the day of birth. The single-dose treatment appears to enable the cerebellum of the rodents' brains to grow to a normal size. This is promising research involving sonic hedgehog.

Faulty stem cell regulation may contribute to cognitive deficits associated with Down syndrome
Date: September 11, 2013
Source: Stanford University Medical Center
Summary: The learning and physical disabilities that affect people with Down syndrome may be due at least in part to defective stem cell regulation throughout the body, according to researchers.



Dosage
 

To receive the benefits of anti-aging for the brain, neuroprotection from toxins etc., 120 mg (~5 mg of elemental) daily is suggested. BUT, for the DS population, it's best to keep the dose as low as possible. For Jett, he takes 2.5 mg (1/2 a capsule) once a day, which seems to be working well for him.

Consider starting with 1/2 capsule of 120 mg (~2.5 mg of elemental) once a day. If symptoms persist, increase to 1 tablet/capsule of 120 mg (~5 mg of elemental) once a day. If symptoms still persist, add a second dose.  An adult or older child may need a dose of three times per day. 

Less is more: I gave Jett a dose of 5 mg and then gave it twice a day until his symptoms went away. Then I went back down to 5 mg a day to see what would happen. I was able to stay at that dose since his symptoms subsided. Recently, I went down to 2.5 mg and saw that his symptoms are alleviated with that low of a dose.

Also, a daily supplement of 300-400 mcg folate is recommended as it enhances the brain's ability to utilize the protective properties of lithium orotate.

Dosage would continue with a small amount over a long period of time. 

 
Sources