We are at the Today Show raising awareness for all of my daughter's health conditions:
Ehlers Danlos (a connetive Tissue disorder), Dysautonomia (an autonomic nervous system disorder), Cold and Heat Urticaria (an allergy like disorder to temperatures), and Idiopathic Hypersomnia (a sleeping disorder).

To learn more about these disorders, please visit:
Http://www.ednf.org Ehlers Danlos Foundation
Http://www.alabamaedsers.org
Http://www.dysautonomiainternational.org
Http://www.dinet.org
Http://www.coldallergy.org
Http://www.hypersomniafoundation.org

Learn more about the spoon theory:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Vitamins are the new Medications

Every since I heard about 23andMe and Ancestry DNA, I wanted to have my daughter tested.  Genetic tests are highly specific and very costly.  After several years and assurances in the validity of testing, we completed the testing through 23andMe.com.  Their tests sequence the genome for variations that deviate from the expected results.  These are referred to as polymorphisms.

23andMe, by law, is only allowed to report on ancestry, not medical issues.  However, there are a variety of websites that will interpret the data for you.  We chose livewello.com.  After a small payment for use of the site, we uploaded a file which we previously downloaded from 23andMe. Livewello was able to provide a report for us on the medical side.  The results are in a pdf format and deliver a specific number of genes both with and without polymorphisms.  The location of the polymorphism is identified by a Single Nucleotide Polymorphism (SNP) number. In the PDF, Livewello provides a general description of each SNP reported as either Homozygous (a variation from each parent) or Heterozygous (a variation from only one parent).  Having a variation either Homo or Heterozygous does not guarantee a fault in a gene.  Some polymorphisms can be turned on or off based on other contributing factors. Now you don't have to stop at just the SNP's reported in the standard report.  You can find other SNP's and plug them into what is referred to as the SandBox on Livewello to provide results from other areas of your genome.  For example, I want to see if my daughter has the propensity to have Familial Atypical Cold Urticaria (FACU).  I can google SNP's for this condition, plug them into the SandBox, and receive a report on the polymorphisms just for this condition.

My daughter's report was eye opening.  There were multiple Homozygous SNP's for Allergies, Methylation, Detox, etc.  I researched each and everyone of them.  Even though there are no known polymorphisms for Ehlers Danlos Syndrome Type III, Dysautonomia, Myoclonus and Idiopathic Hypersomnia, we were able to find polymorhism that when put together create a picture for each of these issues.

It was tough to wrap my head around all of the information being provided.  I quickly found a website for Amy Yasko dealing with Methylation issues and Autism.  This site, though very enlightening, was still just too much to understand all at once.

This leg of our journey has just started.  We want to share it with you.  Just maybe someone could be helped by the information provided.

When Life Seems Too Much and Every One Around You is Sick

Please allow me to encourage you the best way I can.  First, find time to take care of yourself when ever you can even if it is for just a moment here and there.  Second, all this is probably the worst that you will have to deal with at the same time.  Though it does not seem like it, it is all temporary.  It will get manageable for you, your spouse and sick child.

When my daughter first started showing signs of three rare conditions, I had just changed jobs to a great place.  During this time, my father-in-law passed away, within two weeks of that my husband struggled for a week to stay alive.  Within those next three years, we had over eleven close family members die including my mother in law.  My husband went through two additional near death experiences with severe health problems in between each one.  My daughter's health continued to decline through it all with doctors telling us we did not know what we were talking about and that we just need psych help.

We are now on the other side.  Neither my daughter nor my husband is cured.  But, we have found doctors that could help them both and have made life much easier on us all.  Times do get tough, but they do get better too.

The best things we have chosen to do include:
1) take our daughter out of public school and homeschool her.  My husband and I both work fulltime so don't think that should stop you.  We have really good software that does all the teaching and grading.  My daughter can take her time with her studies and takes many breaks, but she is not behind and there is no longer any pressure.
2) Also, when you can, take a break from all the medical doctors.  Find a point when everyone's health is stable, just take as much time off as possible until you are able regain your strength both physically and emotionally.
3) Change your expectations from what you always dreamed of life being like, to how you can best live your lives now.  Are the health issues a road block that you can work your way around, or are they a dead end pointing you in another direction?
4) Go get a massage, even if it is only a thirty minute hand massage.  You wouldn't believe how wonderful you can feel in those 30 minutes.
5) Help your child plug into groups online with others her age dealing with the same thing.  It always helps to talk it out and be able to help others.
6) Find alternative entertainment.  My daughter plays baseball, but it is with the Miracle League.  With this league you come and go as you need.  If you can only play ten minutes, great, everyone supports you.
7) Lastly, don't be afraid to cry.  It is okay.  Much of your stress will pour out with the tears allowing you to buck up and take on the world once again.

It all makes a difference.  It all helps to diffuse everyone's worries and stress.

The Monster Has Been Brought to its Knees

Have you ever had a sinus headache?  I get them often, quite severely.  I have found that pressing just above the nerves will block the pain signals to the brain for as long as I apply pressure.  With Myoclonus, Myoclonic Jerks, specifically, I wanted to see if I could attempt the say technique on my daughter to give her some relief from the jerking spasms which she endures.  Not only did it block while pressure was applied, but it was successful at short circuiting the signals and stopping the jerks altogether.

Oh what joy!  We have found a way to bring the monster to its knees. I have highlighted the pressure areas in the picture below.  For neck and shoulder jerks, I applied gentle but firm pressure to the bundle of nerves as they enter the shoulder.  If only one side of the body is affected, I have to apply pressure to that one side.  I apply pressure until the jerking stops.  This pressure point will not affect breathing or blood flow.  If her position is ineffective or affects breathing and/or blood flow, I move my hands around.  

The same process would occur for the hips and legs that jerk.  The bundle branch of nerves come from the spine, through the fatty part of the buttocks to the legs.  I place the palm of my hand into this bundle, wait for the jerks to stop or come to a very slow tempo, then release. I feel the nerve pulses fight against me, but they do stop.  The harder the signals are, the longer it will take for them to subside.  If the jerks occur on both sides simultaneously, I will have to apply pressure to both sides at the same time otherwise it is much harder to get them to stop.  Once the signals stop on one side I can release and maintain pressure on the other side until they all stop.  My daughter has immediate relief once they subside.

In either case of the upper or lower body being affected, if the jerks do not stop, I move my hands around until I notice a reduction in the intensity of the signals.

My daughter says that it hurts and is uncomfortable, but she would rather that little bit of pain than have the jerks for hours on end.

Blessings to you and hope you find some relief!

Credit to Zygote Body for the use of the picture below.

An Article About Our Family Fighting Dysautonomia

Here is the link to the Dinet newsletter:

http://www.dinet.org/images/newsletters/2014_Spring_Dinet_Newsletter.pdf

Check out their website if you have not been there or have not visited in awhile.  They have a great leadership and provide awesome information and support for all their members.

We are the Champions!

We are the champions - my friends
And we'll keep on fighting - till the end
We are the champions 
We are the champions
No time for losers
'Cause we are the champions - of the world
                              

Do you remember these lyrics, this song.  We fight everyday, but regardless of each battle along the way, no matter how disarming a new symptom or issue may be, We are the champions.  The battle is here and now, but the war is already won.  We will enjoy fellowship with our redeemer who promises no more tears, no more pain and an eternal presence with Him in the most beautiful place in existence.

We can hold on through every hardship because He already paid the price on the cross.  He loves us and wants an eternal fellowship with us.  All we have to do is believe in His son's death, burial and resurrection.  In believing we exercise faith through belief.  We express faith through actions of love.

Are you interested in such a relationship?  Let me know, I will introduce you.  A Christian life is not easy, we struggle just as much, and in some cases more so than non-believers.  There are people who are persecuted for this love.

We have a testimony of God blessing our daughter and our family through some terrible health and life experiences.  We just need to stay focused on Him.  Unlike the message in the song, we are champions not because of our own efforts, but because of those from our Lord and Savior!

Blessings!

The Scary Monster Has Appeared

Do you remember when you were a kid, laying in bed at night, wide awake, in the dark, allowing your imagination to get the best of you, the one of the monster under your bed?  You knew that once the light came on he would be wielded powerless and would just disappear.  But in the dark, he was all powerful, kept you frozen with fear.

Our monster has appeared from the dark.It is all powerful, even in the light.

As a baby, my daughter had chronic ear infections.  Each time the pediatrician would prescribe ear drop antibiotics to clear up the infection and it worked well.

Fast forward a few years, a few infections and a few more treatments and suddenly with each drop placed in the ears, you have a new condition.  You start having seizure like jerking.  This happened to my daughter.  We stopped the ear drops and refused to ever use them again because we knew that they caused the jerks each time they occurred.  As time went by the jerks began to diminish.  They were never completely gone, but at a level that they were not so scary, they were manageable.  For three years, the monster refused to come out into the light. Each time he tried, we were bigger and scarier than him.  Until now, three years later.


 The jerks have returned just as vicious as ever. 

In hopes of helping others understand this rare condition, I posted in several places across the internet about the condition.  It is rare disease month.  In doing so, it caught the attention of someone else.  Though her medication was never mentioned, the information she sent me startled me, it sent shivers down my spine.  We now know that we did this, we did it to our daughter and it is permanent.  The information that she posted was about Flourquinolones and the devastating effects that they have on the body.  As soon as I saw the word quinolone, it struck my memory that this word was used in the description of my daughter's medication, the ear drops.  This medication causes a deterioration of the connective tissue around the nerves.  Most people can handle a mile case of this deterioration, but someone that already has a connective tissue disorder, the condition has devastating affects.  Some people fall victim to the devastating affects after only one treatment, others it can happen after several treatments.  The effects may not appear right away, it can be months to even years later. 

What did my daughter use?  It was Ciprodex, simple little ear drops.  Who/what is the big scary monster? It is the drug, it is the drug company, it is greed, it is the unwillingness to admit the truth when damage is done to own up to it and take the drug off the market.  Do the research, flourquinolones don't just come as ear drops, they come in pill forms as well and may come in other forms.  It is an antibiotic. Even though it worked well with the ear infections, keep in mind that the effects are devastating and permanent.  Hopefully together we can squash this monster down to size and prevent this from happening to anyone else.