A mom and "wholistic" chiropractor's musings and roadmap with Down syndrome

Our diagnosis story

The “diagnosis story” is one I ask of all my patients….to see how it may have energetically and emotionally impacted the child, but mostly to hold space for mom and help validate her experience.

Oh the stories I have heard…….heartbreaking, infuriating…horrifying at how callous, uneducated, uniformed and just plain disrespectful. Mothers telling their doctors “under no circumstances will we abort” and are pressured EVERY.SINLGE.VISIT… “it’s not to late to change your mind…”

“your child will never walk or talk” “your child will be a burden on you and your family” “your child will never be able to do anything…”

Such lies.

And even if that WAS the truth- if a family decides to ‘take that on” then you RESPECT and SUPPORT their decision.

We did not have that experience…ours was a bit different.

The markers for Down syndrome on the one ultrasound I had were missed. To be honest, for that I am thankful.

The first person to suggest Connor had Down syndrome was our midwife, one who had not made it to his birth. It was about 11 days after his birth and we were there for a check on me and Connor. The whole appointment was very fishy- and my intuition was trying to tell me something was off. She took one look and said ” You are going to hate me forever, but I think he has Down syndrome”.

I said, “WHAT? Are you joking?”/

She said no, and you are going to hate me forever, but I think he does. You don’t need to test him, you can just take him home and love him”.

(Which would have been disastrous considering he had both a form of pre-leukemia as well as a major hear defect.)

We we not given a lost of things he would not be able to do, maybe it was implied, maybe that was my own stereotypes and prejudices….I would wrestle with those later…I was just in shock and thought the midwife was crazy.

What I WISH, looking back, was that this was not made about HER “you are going to HATE ME forever”….. there is no hate. That is ridiculous. But what would have been supportive is ” you have a beautiful child. Look how strong and healthy he is!! He is gorgeous! He is going to have an awesome life. I think he may have something extra…. he has some markers for Down syndrome. Let’s talk about getting him evaluated. He’ll be able to accomplish so much and have an amazing life, just like every other child…anything awful you have heard about having a child with Ds is bullshit…” SOMETHING along those lines. Maybe it would have softened the blow, maybe it wouldn’t- I had to go through my own process, face my own demons around that.

I can tell you, almost universally the biggest regret those of us with a child how has Down syndrome has, is that we grieved the diagnosis. So many of us thought it was the end of the world. A big part o that is what we have been exposed to culturally about Down syndrome. But when one’s own medical team is pressuring abortion…..how can you not grieve?

I wish i could go back and tell myself “don’t be sad- this is literally going to be one of the most amazing, transformative, expansive, heart opening things that may ever happen to you. You are going to experience love, acceptance understanding and joy like you haver have. You are going to become part of a community that will becomes so dear to your heart…you may not see it just now, but this will be THE BEST.”

That is why so many of share- to teach all of us, that these lives are precious, and NO ONE knows the future. 

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I remember this moment-

We learned Connor had TMD- a type of pre-leukemia only found in Down syndrome.

I remember throwing up a lot that night.

In between trips to the toilet, I was on the computer.

The first thing I googled was “essential oils for Down syndrome”… Don’t ask me why- that is what I was led to type.

It led me to a blog of an Australian chiropractor who also had a child with Down syndrome. I felt a little less alone.

But it was his blog that led me to the now gone Einstein Syndrome blog, where there was the Top 10 things you need to know about Down syndrome.

I was not ready to deal with #1 on the list- that would come later though, and prove to be exactly right.

As I read the rest of the list, I realized, many of the things on the list we would have done anyway, regardless if our child had Down syndrome or not….no vaccines, real food etc.

Then other things on the list I was right on board with and had already been starting to study.

I remember thinking “I have been being prepared my entire life to have this child WITH Down syndrome! I’ve got this!”

From that blog I learned about TNI- Targeted Nutritional Intervention. It took me very short time to get up to speed on Down syndrome biochemistry. The premise of what I call “hacking gene over-expression” made intuitive sense immediately, I knew it coudl be done.

With time, using energetic testing, labs, energy healing, and functional medicine principles all helped to prove what my intuition told me so early on. And now working with hundreds of kids and adults, I know it is true and it changes lives.

But I will always remember that moment, when in the depth of my darkness and despair, that voice inside me said “whatever it takes”.

And I am so so grateful. For all of it. 

 

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I feel this is a very nice and needed sentiment….
(the one down below….LOL- copied from another Ds mom!)

I do not feel the exhaustion- not from my experience as a mother to Connor- as a wholistic chiropractor who works mainly with people with Ds…well that is another story! 

I feel very blessed with how healthy Connor is. We have gone through many early challenges with him- TMD ( pre leukemia), open heart surgery, feeding issues, …I feel like there are things I am missing, lol….but we work hard on his health and it has paid off and I am so grateful, because I know many others who work just as hard and there are still challenges….I know because of the work I do with the Ds community…. working with hundreds and possibly thousands, I see and know firsthand it is not always easy.

For me, I try to no think too much about what may or may not be ahead- I try to stay present as much as I can, even during the tough times. I am not always successful by any means, and sometimes need some help re-centering.

This is such a fascinating journey….on the one hand, if you understand the biochemistry of Ds, you know the future is not so bright, in general, for those who are not actively working on supporting their biochemistry. So there is always this space of “Am I doing enough”. “Am I missing something?’.. Why is he /his labs/his body not responding the way I would like?” “What can I be doing better?” “Why am I not doing some of the things I know I need to do!”

It is easy to get trapped and stuck here- and that is a dangerous illusion.

And on the other hand, I balance this with …” whatever will be will be. We ARE doing a lot to support him! This is our journey, but this is also HIS journey. I trust in the love and the every present goodness of God and all creation, and I trust that everything works out for a higher transformation, even when I can’t see the big picture, or even with my experience tells me differently.”

It is an interesting tightrope of vigilance, action, intensity with faith, letting go, letting God….allowing yourself to grow and be changed by this life.

I love my Connor. And I love that he chose to be here, with Down syndrome…it is selfish on my part, 100%- but I feel very deep down, in my bones, in my soul, in my heart- that I could not, would not have been able to have my OWN transformation of the heart, without him. 

I so love my fellow Ds mommas! You have all made my life so much richer as we travel down this road together!

 Dr. Elizabeth

💛💙💛💙💛💙💛💙💛💙💛💙💛💙💛
“For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child.

The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child.

Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments, but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting life with Down syndrome can be hard. Very hard.

The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them.”
This Down Syndrome Awareness Month, take a moment to see the momma behind the child.

💛💙💛💙💛💙💛💙💛💙💛💙💛💙💛

Copied from another DS mom.

Connor’s TNI+ Supplement Program as of Sept 2018 weight 41-42 pounds- age 3 turning 4
BEFORE BREAKFAST (30 minutes before) juice (approximately (7:30-8 AM) Diluted apple juice or diluted coconut water
5 drops PSC White Birch
5 drops PSC Propolis
1 scoop Hydro Fx for water
5 drops PCHF Immune System Stimulator
10 drops PSC Arresto Prevento
WITH BREAKFAST (approximately 9 AM)
3 caps Nutrivene daily ( or ¾ tsp)
1 tsp Eternally Herbal papaya powder
½ tsp doTerra IQ Omega
½ capsule Swanson Luteolin Complex
1 capsule doTerra Terra-zyme
AFTERNOON JUICE (30 minutes before or 1-2 hours after meals- approximately 1:30 PM)
5 drops PSC White Birch
5 drops PSC Propolis
1 scoop Hydro Fx for water
1 dropper CTFO CBD 300 mg- take weekends off
1 dropper VITA CHI EGCG
5 drops PCHF Immune System Stimulator
10 drops PSC Arresto Prevento- take weekends off
DINNER (approximately 6 PM)
3 caps (or ½ tsp) pf NVD
½ tsp doTerra IQ Omega
1 capsule doTerra Terra-zyme
BEDTIME (approximately 9:30 PM) – Prefer in coconut milk
5 drops PSC White Birch
5 drops PSC Propolis
1 scoop Hydro Fx for water
1 dropper CTFO CBD oil, 300 mg –take weekends off
1 dropper VITA CHI EGCG
5 drops PCHF Immune System Stimulator
10 drops PSC Arresto Prevento- take weekends off
½ PQQ (Life extension or Designs for Health)
½ capsule Jarrow Pterostilbene
½ capsule Supreme Nutrition Lu Rong Supreme
½ capsule Swanson Huperizine A 9 100 mg capsule)
½ capsule Swanson Luteolin complex
1 squirt Quicksilver Liposomal Glutahione
OTHER
Connor’s Blend applied to feet OR scar AM and PM, 5 days on 2 days off
GHK copper peptide- 1-2 drops in navel daily
PCHF Flu nosode, pneumonia nosdoe 5 drops once a week on different days
Alternate 7.2 Shake, Designs for Health Pure Paleo and Pure Paleo IGG with 7.2 greens added.
Bioplasma 4-6 am and pm or when he asks 😉
PCHF Immuno Spray 1 spray 1-2 times a day

This post is courtesy of Dixie Lawrence.  You can learn more about hacking gene over-expression in Trisomy 21/ Down syndrome at http://trisomy21research.org/

Overall for me clinically- this has been testing and performing well.  I do find sometimes I need to give some additional methylation support to help make this work energetically.  I have been seeing great results with it clinically and personally- as Connor is also on this protocol and has definitely had an increase in his verbal skills, including saying some sentences (age 2 yrs).

Dosing right now is widely varied based on the person.  In some cases, children will start to have sleep disturbance when too much histamine in the brain is liberated.  Just drop back on the dose.  We are also watching to see if the mango or papaya exacerbates constipation in some.  Start with 1/8 tsp, in the morning, and work up on dose until you see results and or sleep issues.  For some patients, this has worked at 1/8 tsp, others are up to 1 tbsp.

From Trisomy 21 Research Facebook Group

Dixie Lawrence- “At present, we have identified a protein that is very low in the DS brain in the majority of children. This protein triggers the development of neurons associated with speech created initially during development by the human speech gene,

FOXP2.
The protein is called HRF, histamine Release Factor, also known as TCTP. It was initially believed that FOXP2 ( a Forkhead box gene) was not active beyond the developmental phase but we now know that most genes belonging to this family actually remain active during life. Years ago, scientists believed that, because neurons do not divide, you were born with a lifetime compliment of them. That assumption was proven incorrect. New neurons are produced regularly throughout natural life in the hippocampus.

We have been able to locate this protein in a few natural substances. We know that they work on HRF as they are all natural histamine liberators. In fact, the regular ingestion of these specific fruits may well be one of numerous reasons why some children with DS have excellent speech while others have moderate to severe impediments. Many things, besides the low levels of HRF may effect speech in DS. Since this post first appeared a few months ago, we have been able to determine that the use of fruit powders containing HRF/TCTP does indeed improve speech and learning in DS.

One thing you need to understand is that histamine isn’t just a protein that responds to allergies, it is a very important neurotransmitter. The human brain requires it for numerous functions, one of which is human speech.
Another thing you need to keep in mind is that it is not histamine that is unavailable but the substance that releases histamine. Histamine itself cannot effect FOXP2, the problem is with the protein, HRF. So feeding your children foods high in histamine will not help. Further, Dr. Swenson has located information indicating that supplementing the diet with histamine may actually make things worse as in the presence of histamine, HRF shuts down. This reaction is similar to the reaction seen in examining the thyroid. TSH activates in the absence of thyroxine and becomes elevated triggering the thyroid gland to create and release its hormones. Once the thyroid releases thyroxine, or you supplement it, TSH levels drop in response.

At this point there are a few things that may Give your children foods or powders containing Histamine Release Factor, Mango and Papaya powder seems to be most effective. Make sure the gut is healthy by using a good probiotic.
During the past few months of trial, we now know that we can elevate brain histamine using fruits or fruit powders containing this protein.
As a neurotransmitter, low brain histamine does explain numerous oddities in our children’s biochemistry, in particular, growth. The majority of children with DS, despite normal human growth hormone levels, remain very small in comparison with their same aged neuro typical peers. Despite treatment with human growth hormone, though growth is improved, most remain somewhat short in stature. Histamine is a prominent factor in growth.

Another point that is extremely important is that new neurons find the DS brain a hostile environment as there are many other genes and proteins that inhibit their development. It will be critical to address them (as we do now with TNI) or any new FOXP2 neurons will not survive.

It is critically important, for this to be effective, that your child is on the entire Nutrivene protocol. This will prevent oxidation and genes that harm new neurons from prevailing. In the meantime, please take a few minutes to read the following article to familiarize yourselves with the neurotransmitter, histamine.
There is no test for HRF levels at this time. However, you can surmise it is low if: your child doesn’t grow well, has poor speech, has allergies, has low immunity….even though treated. But it is only a small percentage who have normal levels.

HRF isn’t the only issue. A major cause of the lack of speech is vaccine toxicity. While we’re trying detox methods, and praying, we don’t know if the damage from vaccines is reversible. We do have a protocol for detoxing that has been very effective.

There is no way other than an autopsy to see if your child’s brain HRF is or isn’t low. The evidence is very clear that it is low in the majority of kids who 1) may have speech deficits, are short in stature, have poor immune response, vision problems. There may be a way to determine levels in the brain eventually but not at this time.

Brain histamine levels are low in AD
https://www.ncbi.nlm.nih.gov/pubmed/21618891

A FOXP2 mutation is not at all what we are talking about. In human beings a mutation – a fault – in the FOXP2 gene results in apraxia and studdering along with other speech defects. But here we are talking about the formation of FOXP2 neurons. You can test for a FOXP2 mutation but you can’t really test for low HRF in the brain. It may be that your child does have a mutation, we now have enough data to be comfortable that a single FOXP2 mutation can be over come by upregulating this protein. It is the protein, HRF that regulates FOXP2 and causes the production of speech neurons. Histamine, that is elevated by giving your child histamine liberators, may control the migration of these neurons. However, in children with two mutated FOXP2 genes, it is unknown whether we can upregulate HRF to sufficient levels to produce these important neurons. A mutation in the FOXP2 gene may result in either the creation of far too few neurons or in the production of damaged neurons. In that case, your child may have complete apraxia of speech. Still, you need to upregulate brain histamine due to the critical role it plays in normal brain function.

HRF, also known as TCTP. It is important that you understand that this protein has two identifiers. HRF and TCTP are the identical protein. It is identical in chemical structure in both plant and human form.
There is a plethora of research but right now, the rest are not important to the current discussion though they may well be in months to come.

HRF is low in DS
https://www.ncbi.nlm.nih.gov/pubmed/11172935

Evidence that low histamine during cortical development results in disruption of FOXP2 neurons does not necessarily mean that histamine, given exogenously, could result in the development of new FOXP2 neurons but it does not mean that nothing can be done as it has been established that FOXP2 continues to express throughout life. One indicator is that there exist cases where speech has been fully restored after brain damage or stroke demonstrating that these neurons are either repaired or gradually replaced.

More importantly, histamine is a critical neurotransmitter that has not yet been addressed in DS, regardless if addressing it can restore or encourage speech.
The brain will never function properly if we neglect this.

There are other histamine related problems in the DS brain, such as fewer receptors. This would be expected with low histamine as these are chemical receptors. H3 has been implicated in Alzheimer’s disease, Down Syndrome and other neurological diseases and disorders.

Histamine-N-methyl transferase (HMT) is low in DS. This enzyme inactivates the histamine neurotransmitter and in the presence of low histamine we would expect it to be low. There is very little to inactivate.

Basically, we have to ask ourselves whether all of these variations in brain histamine are a combined defect in the histamine neurotransmitter or if they are directly related to the low levels of HRF found in the DS.

At present, we theorize that the relationship between receptors, inactivator, neurotransmitter, lack of FOXP2 neurons, slow growth, poor immune response, poor vision, etc. may all stem from what may be a catalyst and that catalyst may be HRF. We do not presently know this but what we do know is that we must do whatever we can to try to correct this deficit.

To begin at the beginning seems to be a logical target. We have a little more thinking to do before discussing whether or not a low histamine diet would be helpful. But it does seem likely that a diet high in HRF may be of some benefit. So let’s start there.

The relationship between antihistamines and the higher incidence of Alzheimer’s disease is yet one more consideration. People with DS seem to live a lifetime exposed to what equals the result of antihistamine usage. It is likely, then, that histamine levels is also related to the development of cognitive decline in DS.
The following are the highest readily available foods that actually contain TCTP (HRF). Adding them to your child’s diet may not encourage the production of FOXP2 neurons but it may raise brain histamine levels. We are continuing an extensive study of brain histamine but in the meantime, it certainly cannot be harmful to add these foods to your child’s daily diet and it may be beneficial.
FOODS THAT CONTAIN TCTP (HFR) DESIGNATED IN HUMAN BEINGS AS HISTAMINE LIBERATORS
TOMATOES
MANGO
PINEAPPLE
PAPAYA

NOTE: The fruit powders are more concentrated than fresh fruit. Green mango powder contains higher levels of TCTP than ripe. Mango seed powder also contains sufficient amounts of TCTP. Papaya powder contains higher levels of TCTP than fresh fruit.

At this point let’s not alter the diet other than to introduce histamine liberators as we are just not certain if exogenous histamine will reduce HRF further though one study indicated that it may.
We must be careful with excess use of antihistamines.

LONG TERM ANTIHISTAMINE USAGE AND AD
http://www.webmd.com/…/use-of-certain-allergy-depression-me…

H3 RECEPTORS IN DS AND AD
https://www.ncbi.nlm.nih.gov/pubmed/10511950

FOXP2 EXPRESSES DURING ADULTHOOD
http://onlinelibrary.wiley.com/d…/10.1002/cne.10654/abstract

TCTP IN EMBRYONIC VISUAL DEVELOPMENT
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852495/

LOW HMT IN DS
https://www.ncbi.nlm.nih.gov/pubmed/11880199

HISTAMINE AND FOXP2
http://neuraldevelopment.biomedcentral.com/…/…/1749-8104-8-4

BELOW ARE SUGGESTIONS FROM PARENTS, AND POSTS FROM DELETED THREADS:

Make sure fresh fruit papaya is ORGANIC- as it is one of the top genetically modified foods!!! If you have a 23andme on your child, look for the PON snp- that is the one responsible for detoxifying pesticides- if that is mutated, organic is much more crucial. The others are not GMO like papaya is. AVOID ‘SUNRISE’ Papaya…a good way to tell if your papaya is GMO is that it will be pinker in color vs. orange..the pink varieties are GMO.
Papaya enzymes WILL NOT HELP.
Lycopene has been isolated from tomatoes so it is unlikely to contain TCTP. What we really want to do us extract TCTP.

CONTINUING WITH INFORMATION ON THIS TOPIC BY DIXIE LAWRENCE
It looks like the number of histamine receptors is equal the amount of available histamine. In cases like DS and AD where there is low histamine there are studies showing low numbers of receptors as well but again we just don’t know.
The bottom line is not so much the production of speech as it is to determine how we can increase this neurotransmitter in the brain. If HRF is the big boy in getting histamine levels to rise in the brain, then I’d say that is where we start. Especially when you consider the relationship between artificially low levels of brain histamine in AD possibly linked to antihistamine use and that 100% of all person with DS (untreated) will develop AD.
If we are correct and it is true in AD then antihistamine usage could make this worse. Sometimes antihistamines are used when they are unnecessary as in cases of mucous but excess mucous in DS may have nothing at all to do with histamine but with the over expression of IL-10 and the best way to deal with it is a Curcumin.

(Great speech) it doesn’t have much to do with speech therapy. If the neurons aren’t there the child will have difficulty with speech. Madison benefited from speech therapy but not your average therapy. She is deaf. Her ability to speak is definitely the result of her being taught to use her lips and tongue to make sounds and speak without hearing.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601999/

Giving your child foods high in histamine or it’s precursor, histadine, may not be helpful and could result in lowering the already low levels of HRF in the brain. If you are using one of the histamine liberators and speech has not improved, try raising the dose or removing foods high in histamine/histadine from your child’s diet.
http://www.sciencedirect.com/…/art…/pii/0306452285902337

GREEN MANGO FROM AMAZON
https://www.amazon.com/…/B01…/ref=oh_aui_detailpage_o06_s00…

World-Down-Syndrome-Day

This will be my 3rd World Down Syndrome Day.

A day that brings an interesting set of mixed emotions.  What does this day mean?  Do I really want to celebrate it? Or what am I celebrating?  What am I supposed to DO?

Our first WDSD- I was still processing the whole diagnosis.  Connor was a few months old, and a few months out of open heart surgery- I was still trying to get my bearings.  I certainly did not want to celebrate a condition or disease (whatever you want to call it- that is for another blog…) that was the cause of my child having to have open heart surgery!  A condition that rocked me to the core, and the more I learned about it (meaning the biochemistry- what is ACTAULLY HAPPENING……..) scared the &%#(% out of me.

I probably “boycotted” our first WDSD.

But time has moved on, I have processed a lot, learned a lot…and loved a lot.

Trisomy 21. 3 of chromosome number 21.  You have 2, Connor has 3.

So we have this extra chromosome here- this extra chromosome that has genes that are fully functional and expressing, and causing massive changes at the biochemical level that directly effect structure and function in profound ways.  Mostly profoundly BAD ways.

And we have ways that we can HACK these genes- either by down-regulating them directly or through the up-regulation of other proteins that then down regulate over-expressed proteins, and this in turn, dramatically changes biochemistry- which then dramatically changes function, structure, health and vitality.

No- there is not currently “A CURE” (whatever THAT means) for Down syndrome. Or at least not yet- this is a little different that other diseases that are largely EPIGENETIC in nature.  It’s one thing to have mutated genes…it’s another to have a whole extra chromosome.

For me, this whole thing is a glorious messy dichotomy….in which I can hold space to bless and be grateful- yes you heard that right- for the extra chromosome, while at the same time I am addressing it. I try not to think of it as ‘fighting it”.  I don’t want the energy behind that. I want to focus on what I WANT, versus what I DON’T want.

And to be honest, we don’t KNOW for sure, all of the GIFTS the extra chromosome brings. We spend so much energy on how bad it is, that we don’t look for or acknowledge the possibility that there might be some good.   When you are an empath, and intuitive, you can sense those intangibles.  There is something different, something unique, something extra that comes with an extra chromosome.  This however is a VERY touchy subject in our Ds community.

For me, this is a day to try to bring some awareness about Down syndrome-

  • that it is not a contagious illness, or caused by incest, or a punishment from God……(please………)
  • that people with Down syndrome have just as much potential as anyone else, especially when given the opportunities to succeed
  • that having a child with Down syndrome is NOT a burden- none of us are suffering
  • that the vast majority of babies with Down syndrome are aborted- based off of fear and misinformation and prejudice- there is a world wide genocide here- and it is important people know about it
  • that people with Down syndrome are more like you and me than they are different
  • that is it still ok that people ARE different. Different does not have to be a bad thing.
  • that people with Down syndrome learn, go to college, start business, have jobs, get married, have children…you know- have a life
  • you HAVE a diagnosis, you ARE NOT your diagnosis
  • you can have a diagnosis, and still be expressing health and vitality
  • that much of the biochemical complications of it can be treated- and more discoveries are being made!!!!
  • there are so many wonderful things out there- Targeted Nutritional Intervention, Neurodevelopmental programs, light therapy techniques…..so many things available to help people that can dramatically change lives
  • that even with all these things, there are still unknowns, people with DS that are struggling, and not responding to treatment- and so more research is desperately needed.
  • Researching Down syndrome is not “sexy”.  Much of the research has to be privately  funded- which means organizations like https://www.lumindrds.org/   and www.http://lejeuneusa.org/ need your help and support.

Connor AND his diagnosis expanded my heart so much, I see the world differently now, I FEEL the world differently now. That just would not have happened without that blasted extra chromosome that I am frenemies with. #truth

Without DOWN SYNDROME my life would be totally different.  And I am convinced not for the better.  I am a member of a club, a tribe of other people lucky enough to have been chose to walk this path.  I have met the most beautiful souls through this diagnosis.  The mamas I have met have become some of the closest people to my heart.  My life is better because of an extra chromosome, and I am so thankful God designed it that one.

One Extra Ordinary Journey. One Extraordinary Journey.

UN Secretary-General Ban Ki-Moon’s message for first WDSD celebrated in the US- 2012

“On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

For more information, see http://www.oneextraordinaryjourney.com

 

TNI Dosing Charts

 

SUPPLEMENT DOSE
Nutrivene Daily Dosed by weight

·         daily dose is divided into two portions (am and pm is best) and given with meals

Daily Enzyme Dosed by weight

·         daily dose divided into 2-3 portions, and given with meals

NightTime Formula Dosed by weight, given at bedtime
PolyPhenol Complex

(1 product containing Resveratrol, EGCG, PQQ, Co Q-10, Vitamin C and Glutathione)

Dose off of resveratrol content for weight.  Each dose is given

·         Twice a day (ideal)

·         If once a day only- give at bedtime

·         Needs to be separate from Nutrivene daily by 4 hours

Curcumin Dosed by weight

·         10-30 mg/kg

·          best combined with PolyPhenol Complex

EFAs Dosed by weight- given am and pm
Glutathione Use for additional liver and detoxification support

·         4 mg/kg at bedtime general dose

·         Up to 8 mg/kg for vaccine, surgery, and drug detox

·         A glutathione rescue dose (4 mg/kg) needs to be given within 2 hours of every dose of acetomenophen (Tylenol)

 

 

WEIGHT TOTAL NUTRIVENE DAILY DOSE (split into 2 portions)
<20 lbs (<9 kgs) ½ tsp or 2 capsules
21-40 lbs (10-18 kgs) ¾ tsp or 4 capsules (3/4tsp divided by 2 is 3/8tsp)
41-60 lbs (19-27 kgs) 1 tsp or 6 capsules
61-80 lbs (28-36 kgs) 1 ½ tsp or 9 capsules
Over 80 lbs (>37 kgs) 2 tsps or 12 capsules

 

WEIGHT TOTAL Enzyme dose (divided into 2-3 portions)
Infant to 15 lbs ¾ capsule
15-25 lbs 1 capsule
25-35 lbs 1 ½ capsules
35-50 lbs 2 capsules
50-70 lbs 2 ¼ capsules
70-100 lbs 3 capsules
Over 100 lbs (may want to switch to adult product) 3-4 capsules

 

WEIGHT TOTAL NightTime dose
Infant to 15 lbs ¼ capsule
15-25 lbs 1/2 capsule
25-35 lbs 1 capsule
35-50 lbs 1 1/2 capsules
50-70 lbs 2 capsules
70-100 lbs 3 capsules
Over 100 lbs 3 capsules

 

Nutrient in POLYPHENOL

Complex

Per 4 capsules

in mg

Per 3 capsules in mg Per 2 capsules in mg Per 1 capsule in mg Per 3/4 capsule in mg Per 1/2 capsule in mg Per 1/3 capsule in mg Per 1/4 capsule in mg
Vitamin C 100 75 50 25 18.75 12.5 8.33 6.25
CoQ10 60 45 30 15 11.25 7.5 5 3.75
Glutathione 40 30 20 10 7.5 5 3.33 2.5
EGCG 270 202.5 135 67.5 50.64 33.75 22.5 16.88
PQQ 20 15 10 5 3.75 2.5 1.66 1.25
Resveratrol 275 206.25 137.5 68.75 51.57 34.38 22.9 17.10

*another dosing option is that the polyphenol 1 capsule is the dose for 38 pounds/17kg at 4 mg/kg resveratrol

Individual Polyphenol Components (if not doing NuTriVene PolyPhenol Complex) Dosed by weight
Resveratrol Start at .5-1 mg/kg, and gradually workup to 4-5 mg/kg.  Give each dose 2 times a day 8 hours apart.
EGCG Start at .5-1 mg/kg, and gradually workup to 4-5 mg/kg.  Give each dose 2 times a day 8 hours apart. Must be 4 hours away from Nutrivene Daily.
PQQ Infants 3 mg, toddlers 5 mg, children 10 mg, adults 20 mg. Give with EGCG, once a day.

*In Infants, it is often easier to give these separately, to control the dose and it is worked up, and until the child reaches a weight where they can easily switch to the polyphenol capsules.

lbs_to_kg_conversion_table

Micro RNA 155,  (miRNA-155) is over expressed in Down Syndrome and that this does indeed damage the Blood Brain Barrier. This is a new development in the study of genes and their relationship to disease.  Very serious damage is caused by these miRNAs such as TMD, Leukemia, the failure of neurogenesis, etc. The following is a collection of supportive studies.

WHAT ARE miRNAS? http://www.exiqon.com/what-are-microRNAs

“We have briefly discussed that miRNA-155 causes damage to the blood brain barrier when over expressed.  This post is a long one but your child’s future may be affected by the information you find here. There are 5 microRNA genes mapped to C21 with crossover activity on other genes.”

At present, five miRNA have been identified that are mapped to chromosome 21 and upregulated in DS. MiRNAs-155, 125b, 99a, 802 and Let 7. Three of them, Let 7, miRNA-99a and miRNA-802 are tumor suppressors or regulate tumor suppressors. This explains why people with Trisomy 21 rarely develop solid tumor malignancies.

MICRO-RNAs – SEE PARTICULARLY THE SECTION ON DOWN SYNDROME

The Role of MicroRNAs in Human Diseases  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3558168/

Abnormal MicroRNA Expression in Ts65Dn Hippocampus and Whole Blood: Contributions to Down Syndrome Phenotypes  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3254042/

“MiRNA-155 WHEN UPREGULATED DAMAGES THE BLOOD BRAIN BARRIER” http://www.ncbi.nlm.nih.gov/pubmed/24604078

“Though it is known that miRNA-155 is upregulated in DS scientists have not bothered to relate this to DS but to other, more ‘acceptable’ neurological disorders. This is very sadly a theme in DS research where monies are spent examining serious problems in diseases that ‘normal’ people fall victim to. I have always found it unacceptable that new findings in DS are touted as potentially offering insight to cures for diseases in non DS patients. This is obvious in DS research focused on therapies for non DS Alzheimer’s disease and now with miRNA research.”                                               – Dixie Lawrence, Biochemist and T21 researcher

Resveratrol (from grapeskins or Knotweed) and EGCG (from Green tea) have multiple benefits, including supporting cell health, anti-aging benefits, immune response support, healthy inflammatory function, anti-oxidant effects, and brain and neurological support. However,  Resveratrol and EGCG are two phytochemicals with very important roles in TNI (targeted nutritional intervention- the name for the protocol to address gene over-expression caused by Trisomy 21/ Down syndrome.)

Plant polyphenols as natural drugs for the management of Down syndrome and related disorders.    https://www.ncbi.nlm.nih.gov/pubmed/27826066

The polyphenols resveratrol and epigallocatechin-3-gallate restore the severe impairment of mitochondria in hippocampal progenitor cells from a Down syndrome mouse model.  https://www.ncbi.nlm.nih.gov/pubmed/26964795

RESVERATOL

Resveratrol is used in T21 to address Micro RNA 155.An elevation of MicroRNA – 155 causes permeability in the Blood Brain Barrier (BBB), which allows toxins and other things to get to the brain and nervous system tissue.In Trisomy 21/ Down syndrome, people have a minimum of a 30% – 50% over expression. This results in constant access to the brain of toxins that might otherwise be filtered by this barrier. A damaged blood brain barrier will not let everything cross it to enter the brain but neither will it efficiently keep every harmful thing out of the brain. Studies have proven that it reduces 155 by upregulating MicroRNA-633. Since 633 is a tumor suppressor gene, this is a plus.

Studies have confirmed that Resveratrol heals the BBB in Alzheimer’s disease. The mechanism in AD and DS creating the permeable BBB is the same. There is every reason to believe that Resveratrol takes care of this, but it is not know to what degree.

“The homeostasis of the central nervous system (CNS) environment is maintained by the BBB, which separates the brain from the systemic blood circulation. The cerebral capillaries are organized such that the brain is protected from blood-borne compounds, since a strict homeostasis of the neuronal environment and an intact barrier are essential for optimal brain functioning. However, during various neurological diseases the permeability of the BBB may be changed. This review will discuss the role of the BBB and especially of the CEC in various neuroinflammatory diseases.”http://pharmrev.aspetjournals.org/content/49/2/143

Resveratrol also protects from hypoxia, an issue in Ds because of the high amount of sleep apnea in the Ds population.

Protective effect of resveratrol against chronic intermittent hypoxia-induced spatial memory deficits, hippocampal oxidative DNA damage and increased p47Phox NADPH oxidase expression in young rats. http://www.ncbi.nlm.nih.gov/m/pubmed/26940604/

Neuroprotective role of trans-resveratrol in a murine model of familial Alzheimer’s disease.  https://www.ncbi.nlm.nih.gov/pubmed/25024312

But there is another issue In Trisomy 21/ Down syndrome where resveratrol is particularly useful.

Resveratrol helps repair telomere shortening by upregulating telomerase. Studies suggest that it does not require large doses to effect telomere length.

Immortalization of epithelial progenitor cells mediated by resveratrohttp://www.nature.com/onc/journal/v27/n17/full/1210886a.html

SIRT1 prevents replicative senescence of normal human umbilical cord fibroblast through potentiating the transcription of human telomerase reverse transcriptase gene.   http://www.ncbi.nlm.nih.gov/pubmed/22197555

http://munews.missouri.edu/…/1119-natural-compound…/

What does this mean for people with Down syndrome?

It means Resveratrol may be an answer to yet another serious issue in DS.

“It is suggested that telomere repair is directly related to cell survival (fact) and human longevity (both fact and probability). In DS the telomeres are very short in comparison to normal controls and they simply do not repair at the rate seen in the non DS population. Giving our children the ability to repair the telomeres may help prevent rapid aging, Alzheimer’s disease, Leukemia, and other age related diseases, including autoimmune diseases associated in younger people and even small children with DS. One very important result may be giving our children an additional decade or more of healthy life.

The tips of chromosomes (think about the tips of a shoe string) are called telomeres. These prevent the destruction of DNA and serve other purposes. Every time a cell divides telomeres shorten. It’s as it the tips are chipped off during cell division. But the human body produces an enzyme called telomerase that activates and repairs the telomeres instantly. What a miracle. But not for our children. The telomeres shorten but are not easily repaired. In time, they are too short to sustain life and it may well be a major reason for premature death in DS. Remember, on average, our children’s lives are 20 years shorter than a non DS individual. That means that DS is a terminal disease by definition because death is directly related to it. But! Resveratrol upregulates telomerase and allows the repair of telomeres. You can see how critical Resveratrol is for our children.”

-Dixie Lawrence, T21 biochemist and Ds researcher

EGCG

EGCG is used to down regulate DyrK1a, and enhance learning, cognition and memory.

Green tea polyphenols rescue of brain defects induced by overexpression of DYRK1A.  https://www.ncbi.nlm.nih.gov/pubmed/19242551

Epigallocatechin gallate: A useful therapy for cognitive disability in Down syndrome? https://www.ncbi.nlm.nih.gov/pubmed/28203607

Combined Treatment With Environmental Enrichment and (-)-Epigallocatechin-3-Gallate Ameliorates Learning Deficits and Hippocampal Alterations in a Mouse Model of Down Syndrome. https://www.ncbi.nlm.nih.gov/pubmed/27844057

Neprilysin is a zinc-dependent metalloprotease that cleaves peptides at the amino side of hydrophobic residues and degrades the amyloid beta peptide whose abnormal misfolding and aggregation in neural tissue has been implicated as a cause of Alzheimer’s disease.

Neprilysin is low in the brain of both AD and Down syndrome patients. A recent study found that a DYRK1a inhibitor, harmine, upregulated Neprilysin in both DS and AD.

Neprilysin Is Suppressed by Dual-Specificity Tyrosine-Phosphorylation Regulated Kinase 1A (DYRK1A) in Down-Syndrome-Derived Fibroblasts https://www.jstage.jst.go.jp/arti…/…/40/3/40_b16-00825/_html

Harmine, the compound utilized in the above study is not an option for use in DS as there are numerous issues involving both side effects and availability. However, EGCG is very similar in structure and also acts as a DYRK1a inhibitor and has the identical effect on Neprilysin, increasing its levels in the brain.

(-)-Epigallocatechin-3-gallate attenuates cognitive deterioration in Alzheimer’s disease model mice by upregulating neprilysin expression. https://www.ncbi.nlm.nih.gov/pubmed/…

DOSAGE RECOMMENDATIONS

Resveratrol- start with .5 – 1 mg/kg (1 mg of resveratrol per 1 kg of body weight).  Do this does 2 times a day, spaced at lest 8 hours apart.  Gradually increase the dose to 4-5 mg/kg.

EGCG- start with .5-1 mg of EGCG per kg of body weight.  Gradually increase the does anywhere from 3-5 mg.kg.  Some studies and protocols for much higher amounts.

ADDITIONAL CONSIDERATIONS

EGCG needs to be separated from folate (like in NuTriVene) by 4 hours, as EGCG can effect one of the enzymes in the folate pathway.

At doses much higher than we are using in T21, liver and kidney stress have bee noted.  If your child is low in ferritin, be sure to monitor it, and additional supplementation with a high quality iron and adding organ meats to the diet may be warranted- as EGCG can in some cases, have a chelating effect on iron.

Nutrivene products- the foundation of Targeted Nutritional Intervention (TNI)

NUTRIVENE DAILY FORMULA

NuTriVene-D is the main supplement in the treatment of Down syndrome, and the one to start with. It was developed by a team of researchers and scientists.  It’s purpose is to provide nutritional agents, such as vitamins, minerals and amino acids, in specific forms and amounts to help offset or manage several of the genes over-expressing in Trisomy 21/ Down syndrome.

“The Daytime Formula targets all the aberrant nutritional needs of kids with DS. It corrects the damage to the folate/methyl cycle caused by the over expression of the CBS gene. It provides all of the missing precursors for normal thyroid function. It provides nutrients found in low quantities necessary for immune response. It targets oxidative stress caused by the over expression of SOD1. There are there antioxidant enzymes in the oxidative triad that must be in levels sufficient to work in synergy. When they do not work, the cells fill up with hydrogen peroxide. Hydrogen peroxide then becomes the most deadly free radical known to man, the hydroxyl free radical. So, in addition to providing other antioxidants, Nutrivene Daytime Formula upregulates the two antioxidant enzymes that are NOT located on chromosome 21, Catalase and Glutathione Peroxidase and therefore far too low for the triad to function. But by up regulating them as much as possible, this triad functions much better. The Daytime Formula normalizes the child’s biochemistry as much as possible in the exact levels required.”

– Dixie Lawrence, DS Biochemist and Researcher

To read the list of article about Nutrivene-D please go here http://www.nutrivene.com/educational_information.php

http://www.nutrivene.com/faqs.php

 

If you have an infant, start with the NuTriVene Daily Formula.  It comes with dosage information, as dosage is based on the weight of your child.  I recommend starting at 1/4 of the dose for your child, and gradually work up to the full dose.  The full dose split into 2 doses a day ensures your child has better blood saturation of the product.

There are 2 other parts of NuTriVene,  the NuTriVene Daily Enzymes and the NuTriVene NightTime Formula.

NUTRIVENE ENZYMES

The NuTriVene enzymes are digestive enzymes.  These help to break down food so that it is more easily digested, and nutrients are better absorbed and assimilated by the body.  For infants, do not start this product until solids are introduced….however infants on formula may benefit from this product.  Infants with acid reflux  may have a worsening of reflux with this product.  Dosage recommendations come with this product.

To use, you can open up the capsule and sprinkle into or onto food, until your child is old enough to swallow pills.  Our webstore also carries some other digestive enzyme options, including a chewable one!

NUTRIVENE NIGHTTIME

NuTriVene NightTime formula helps provide nutrients to support growth hormone and serotonin production.

Growth hormone can be deficient in people with T21.  This product makes sure the nutrients are available for the pituitary gland to make growth hormone.  The nutrients also help the body make serotonin, a neurotransmitter that can help with sleep, which is often low in children with T21/Ds.  Tis will better aid children with Ds to get into REM sleep- which is crucial for growth and development.  Dosage recommendations come with the product.

Please note that while all people with Trisomy 21 have genes that are over-expressing, each person still has an individual and unique biochemistry, and may be best served by working with a practitioner who specializes in TNI, to customize a specific protocol.