Lydia's Success Story

I'm so happy to share Jane and Lydia's story with you!

She mentions many different concepts, which I will follow up with in a new post every day to explain. The ones I've already blogged about, I've hyperlinked for your convenience as well as added to "Related Posts" at the end. Please keep track of your questions and, if I don't answer them in the upcoming posts, please feel free to email me (check About Me) to clarify. If you have research/ experience/comments on the topics that I haven't blogged about yet, please share with me so I can integrate them into the articles.

And to make Lydia's journey all the more inspiring, it is important to note that she wasn't a "superstar baby".  She said "up" at 15 months. She didn't walk until 20 months and was, according to Jane, incredibly delayed in occupational therapy, which she thinks was rooted in vision issues. And now, Jane:


Hello,

Thanks to Andi who does a wonderful job with her blog!  How lucky we all are to have a clearinghouse of information on Down syndrome. 

I have not gone through my files to verify that all of this is accurate.  I am NOT a doctor.  What works for Lydia may or may not work for your child.

Upon request, I sent this video to Andi a while ago.  She wanted me to write a success story to go with it and that has made me pause.  Why is Lydia doing so well?  What pieces of what we did was helpful?  What would I do the same and what would I do differently if I have another child with Down syndrome?  Wow.  Big questions.  If you are like me, you're hoping for a nice black and white, clear-cut to do list. That I don't have.... I would hand it over if I did!  Here is my best shot, written with love and hope.

There are a few things that I believe had a significant impact on Lydia's physical, mental and emotional health and I would definitely do again.  First, I would pray and pray and pray again.  God's hand has been a vital part of our journey.  Some day I'll chronicle the "invisible hand" that continually steered us in the direction of healing for Lydia.  Listen.  Listen to your gut.  You know more than you think you do, and intuition is also God's way of helping us.   

Gather your troops.  It takes a village.  Get into as many carpools as you can.  Accept help from friends, neighbors and relatives.  Seek help where you can.  Make a to-do list and divvy it out... find an organic farmer to purchase beef at a good price, find an organic buying club, try 3 different gluten free breads and decide which one is the best taste for the least cash, search websites for GFCF (gluten free/casein free) Halloween treats, etc.  Truly.  Your loved ones want to help.  Give them doable, 1-hour tasks if you can.

Here is what we did for Lydia.  Serendipitously, I met a high-powered attorney from NY with a child with DS.  Our phone conversation had me as the jury and she as the lead council.  Beyond a shadow of a doubt she convinced me that Down syndrome is biomedical.  Our kids have an extra chromosome.  This impairs their functioning.  Figure out what is wrong and fix it like you would any other illness.  So, from the time Lydia was 4 months old, I have been convinced that DS is biomedical and it can be treated.  Thank God for Cheryl G.  She gave me research and hope... and guaranteed me this would work.  I have the email to prove it.... and I still have the boatload of research she sent.

I did what biomedical things I knew.  I pierced omega 3 caps and squirted them into her mouth.  I breastfed for 15 months.  I tried to eat healthy.  Lydia has had cranial sacral therapy since she was an infant.  Cranial abnormalities impact our kid's ability to breath, sleep, and think.  We continue this therapy a few times a year, and I believe it's an important piece of Lydia's healing.  Lydia's thyroid is monitored every 3 months.  The thyroid is key.  I'd keep a really close watch on that.  My advice is to get standing orders for every 3 months at the hospital.  Get them taken and don't settle for low average.  (I go to the hospital because the lab techs don't always get it in one poke.) I read that our kids appear to have a great need for antioxidants and found a product recommended by many on a listserve, Ambrotose AO.   After 3 days of supplementing with A AO, Lydia's eye contact and energy increased visibly.

This has been a long haul.  We've done many things.  Fewer than five items have made this quick of a positive impact.  We started the traditional birth to 3, early intervention, soon after the hospital.  A little before Lydia was 2, we started a neurodevelopment program that included a very targeted, individualized therapy program.   I think this was helpful.  It was very demanding and kept Lydia and myself isolated.  It wasn't great for my mental health.  If I were to do it over, I would focus most of my energy on biomedical intervention, some targeted therapy and balance for my family and myself. 

Lydia became a patient of a DAN (Defeat Autism Now) doctor when she was 15 months.  She started Lydia on supplements to help her altered biochemistry.  Additional Oils, B12, Folinic Acid and probably zinc, Vitamin C, Vitamin D3 and a Probiotic.  She ordered heavy metal testing and a Metabolic Analysis profile.  The results were bleak.  Heavy metal toxicity was extremely high and barely any of Lydia's metabolic profile was in normal range.  The oxidation cycle, detox cycle, citric acid cycle, methylation cycle and on and on were all broken.  I wept.  "If you don't look, you won't find," was Cheryl's response when I said I doubted Lydia could have metal issues at such a young age.    Although it broke my heart to understand how unhealthy my baby was, we were incredibly lucky to have a doctor who knew what tests to run and then how to help bring about healing.  We began chelation for the heavy metals, which present as a cog in the wheel or cycle.  As we took the metals out and supplemented what was lacking in each metabolic cycle along with additional minerals to compensate for those eliminated due to chelation, Lydia began to improve.  Some days I thought I could notice a difference immediately.  If you are a parent of a sick child, you know that wishful thinking is always needed and sometimes clouds reality.  My reality was that Lydia was getting better with chelation.  Test results showed it too.

What else...  I prayed the hardest for Lydia's speech.  I wanted her to be able to communicate with her sisters.  I rented the Sara Rosenfeld Johnson DVDs and watched them with my sister and another speech therapist.  I did oral motor training with Lydia.  BUT AGAIN... if I could have gotten Lydia's tone better by healing her body, her therapy would have been easier and more effective.  I would definitely educate myself on Sara Rosenfeld Johnson's techniques.  Our kids have low tone -- everywhere!  Figuring out what finger foods promote better jaw strength is worth it.

OK - flash forward.  I used flash cards using the quick flash technique taught by NACD (the National Association for Child Development) to teach Lydia how to read.  We kept it positive and made it fun.  In first grade Lydia wasn't keeping up with her peers so I pressed our cranial sacral doctor / DO for what he does with Alzheimer, Parkinson or patients who are neurologically disordered.  He prescribed Chinese memory herbs.  These made an immediate impact.  When I accidentally ran out and Lydia didn't get these, her teachers didn't know what happened.  I did.  I haven't run out since. 

Lydia made huge gains in the last two years.  First, she started ginkgo.  Please read Andi's post on ginkgo and why it is so important to people with Down syndrome.  The Chinese herbs have ginkgo also.  ADD (Attention Deficit Disorder) was a HUGE problem and if you can't focus in school, it's not easy to learn.  We started Neurofeedback, which has helped tremendously.  This didn't produce results quickly, but it has allowed her brain to work much better.  The book, A Symphony in the Brain is a great book to understand neurofeedback.  It is easy to read and written by a reporter, not a scientist. Maybe ask a friend to buy it from Amazon, highlight it and then just read the highlighted parts. 

We rented a hyperbaric chamber this summer to determine if Lydia is a "responder" to this treatment.  Hyperbaric Oxygen Therapy has had huge success in healing for many populations.  The research is fascinating.  Lydia responded very well and I think the hyperbaric made a world of difference in her ability to organize language.  I feel I could have spent years trying to get her to organize her thoughts to the degree that the hyperbaric did in one month.  I know that sounds inflated...  but her thoughts just started to flow like my typically developing children after the hyperbaric treatment.  Her tone also improved which allowed for better articulation.

My other piece of advice is to support your spouse as best as you can.  It's not easy raising kids.  Raising a child with special needs is even more difficult.  Everyone is doing their best... moms and dads alike.  Love, compassion and understanding for your child, your spouse and yourself will help everyone in the healing process.

With love and hope and joy,
Jane

Here's a video of Jane sharing her story at the Down Syndrome Track at the AutismOne Conference in 2012. Lydia speaks as well.  The Dawn of a New Decade

Related Posts

Meet Lydia
Ginkgo: The Hows and Whys for Down Syndrome
Why supplement and monitor zinc?
Probiotic/Yogurt Strains: Benefits and Uses
Vitamin C Plays Important Role in Brain Function
Thyroid & DS Go Hand in Hand
Healthy Meal Planning Blogs
How Much Vitamin D3?
Folic Acid Cuts Alzheimer’s Risk in Half
Parent's Resources for Guidance on Down Syndrome
Why B12 & Folinic Acid for Down Syndrome?
Get Your Own Neurodevelopmentalist
Nutritional Page 
Neurodevelopment Page
Methylation Pathways
Hyperbaric Oxygen Therapy
Feed Memory by Kan Herbs
Neurofeedback