The Name is Not the Thing

When I first began giving supplements to my daughter, it was more of an experiment than anything.  I was reading Healing and Preventing Autism and came across symptoms that were similar to those my daughter was experiencing.  At the time, the professionals had told me that she was just very delayed due to having Down Syndrome.  However, the book described foul smelling bm’s, severe bloating, and skin issues that mirrored issues that we had going on.  I thought to myself, “They say that she is not Autistic, but what if these treatments will work for her?”  I decided to try some Vitamin D and Probiotics.  I thought that honestly, we could all probably use these things anyway.  So that’s what I did.  And within a week, my daughter had begun regaining her eye contact.  It was thrilling to see!

Heavens special child

Here’s the thing.  She WAS Autistic, we just didn’t have the diagnosis.  So one might say that yes, these things worked because the treatments matched the disorder.  However I have since found that it doesn’t really matter what the diagnosis is at the end of the day.  Diagnoses are just names for us to categorize a disorder to give us a reference point.  For example, Autism is a diagnosis that requires certain symptoms to be present in order to be diagnosed as such.  There is no blood or genetic test for Autism.  Furthermore, those symptoms can be present in many other disorders.   For example, hypotonia is common in children with Autism AND in Down Syndrome.  It is not exclusive to one or the other.  I have another child with hypotonia, but she does not have either Down Syndrome or Autism.   In my youngest, I have no diagnosis to hang my hat on and say, “This is X.”

Something else that has been plaguing me for years is this idea of “fixed” and “genetic” characteristics.  While yes, there ARE some things that are immutable, there are others that are not.  Using my eldest yet again, she has almond shaped eyes because of the DS (which make her little peepers soooooo pretty, I might add!)  Her eyes will not change.  They are truly “said and done.”  However people don’t realize that when something is “genetic,” it is really more an issue of genes being or not being expressed.  These genes are involved in chemical processes that are constantly active in the human body and can be affected by external influences.   How our genes express is being studied in an emerging field of science called Epigenetics.  What was once thought of as our fixed destiny is now being called into question.

People don’t realize that all of these genetic disabilities have chemical processes happening that CAUSE the problems in the first place.  So in Down Syndrome (Trisomy 21,) there is an extra chromosome causing an imbalance in chemical processes in the body.  So there will be too much of this and too little of that, and the body is imbalanced.  Some parents and researchers have decided to try to balance out the disruptive chemical functions using nutrition and supplements so that the bodies of people with Down Syndrome are functioning in a more healthful way.  If you wish to read about some of these, check out this well researched site by a friend of mine whose son is just blossoming due to his mother’s extensive knowledge of the physiological processes involved with Down Syndrome.

 

There was a study done looking at fraternal twins, one with Down Syndrome and the other with Autism, and it was discovered that there were several physiological maladaptive processes in common between the two.  These are two very different disorders, yet they had similar biological processes happening.  Then another study looked at the genetic similarities between Autism, Down Syndrome and Rett Syndrome.  They found “Our results surprisingly converge upon immune, and not neurodevelopmental genes, as the most consistently shared abnormality in genome-wide expression patterns. A dysregulated immune response, accompanied by enhanced oxidative stress and abnormal mitochondrial metabolism seemingly represents the common molecular underpinning of these neurodevelopmental disorders.”

After speaking with hundreds of other parents, some with chidren on the spectrum, some with Down Syndrome, and some with other issues including one mother with a son with Primordial Dwarfism, I discovered that our kids had so many issues in common.  We have all begun coming to the conclusion along with other specialists and physicians that the bottom line is, it doesn’t matter what the label is.  Our kids are being healed by many of the same treatments even though the names are different.  Children with Autism are being healed by the same things that are helping other kids with Diabetes, Asthma, skin conditions, seizures and many others.  I have no doubt that children with chromosomal issues could also be helped:  Angelman Syndrome, maybe Klinefelter or Turner Syndrome.  I know that this might sound farfetched or outrageous.  But the more I meet people with diverse challenges, the more I believe that underlying all of these conditions are physiological processes that can be addressed.  These are not “written in stone” disorders with nothing more that can be done.  We can find ways to silence genes and turn on others…..we just have to try.

So if you see a treatment for a symptom that fits your child’s symptoms, but it is not labelled as a treatment for your child’s diagnosis, don’t be so quick to write it off.  Of course, do research to make sure it’s safe to try.  But ultimately remember, The Name is not the Thing.  Try it.  You might be surprised, and you may shock the pants off the doctor who told you nothing could be done!

surprised doc

 

Poor Guy!  He never knew what hit him!

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4 thoughts on “The Name is Not the Thing

  1. Excellent read! Very inspirational AND informative… I have a daughter who was diagnosed with a number of disabilities, one of which was dysthymia (chronic depression). I have yet to connect with other parents whose child (ren) may have the same or similar diagnosis; but I am sure that is because I have been trying to learn everything I can about this condition. You have obviously spent a great deal of research and connecting with other parents. Hopefully, I will have the courage to do the same. It’s just really hard for me to talk about it without bursting into tears.

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    • I am so sorry to hear this, Jai. It is really hard to hear and then accept when we find out our kids have these issues. Oftentimes, the professionals don’t make it any easier with their prognosis of the situation (tip: ignore them.). Please do make sure to connect with others if you can. You won’t feel so alone as they “get it.” They oftentimes are the best support you can have and will be your lifeline in trying times. The other thing that I didn’t realize was the amazing amount of collective research that your newfound tribe can have, resources that will help both you and your daughter. I will be thinking of you and your daughter.
      Thank you for your comment. I hope that I can continue to write content that helps others. This blogging thing is all new to me.

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  2. This is an inspiration to me because as the mother of an adult daughter who suffer with vestibular migraines, nutrition and food choices are very important to her well being. In fact, what she eats can make the difference of whether she can function or has to stay in bed in a darkened room. We had very little help from the medical community. The forums have helped my daughter by validating her struggles and suggesting possible diet and environmental changes. I am very grateful to you for writing about this and for being there for your daughter and not just accepting what the doctors said.

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    • I am so glad to hear that you got help for your daughter. I have fiund that forums really are the best places to get the help you need when dealing with any medical or developmental needs. MUCH better than the advice of many physicians. The parents are in the trenches with you and have tried what they are recommending. I hope things continue to improve for her!

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