Opsoclonus Myoclonus Syndrome

This category is all about my son’s condition. He took a nap on June 6, 2017, and he woke up without the ability to walk, stand, stop shaking, feed himself, etc. He was misdiagnosed several times.  These misdiagnoses included strep, Cerebellitis, and Ataxia Telangiectasia Like Disorder. This is our journey.

YouTube Videos

YouTube Videos I have been working hard on these YouTube Videos.  It has been emotionally draining watching each and every video I have taken of Hunter.  My goal is to bring awareness to Opsoclonus Myoclonus Syndrome. Misdiagnosis Hunter was misdiagnosed MULTIPLE times over the course of the 2 years that he got sick.  OMS is …

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Amish Iridology

Amish Iridology I get a lot of hits (searches) for Amish Iridology and Reuben Schwartz.  With the amount that I get, I thought I would do a follow up on him.  I will also link below, in Related Posts, the past things I have written. As always, you are more than welcome to send me …

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New Video from NORD

New Video from NORD Here is a brand New Video from NORD.  For those who have no clue what NORD is…it is the National Organization for Rare Disorders.  This site does not have the run of the mill type of conditions.  By “run of the mill” I mean those that are diagnosed frequently. Awareness This …

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Little Bit of Everything Going On

Little Bit of Everything Going On There has been Little Bit of Everything Going On lately.  Last week, I spent several days in St. Augustine, FL with my daughter and son.  We went to get his treatment and learned so much, again. It has been mentioned to us that one of our children has “recovered” …

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Beads of Courage

Beads of Courage We have been trying to get Beads of Courage since this journey began 2 years ago.  I first learned about them from a fellow blog mom Renee’s Little Earthling Blog.  Her son’s story was where I read about it. Norton’s Children’s Hospital At the 3rd hospital, Norton’s Children’s Hospital, we approached a nurse …

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Time to Get Over Ourselves

2 Day Hospital Stay In this post, Time to Get Over Ourselves, Hunter, Alyssa, and I have been at Vanderbilt Children’s Hospital for 2 days for his infusion.  This is the hospital that misdiagnosed him the second time.  Now, after 2 yrs we have found a specialist who has seen his condition. Now, she has …

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The Results of MIBG Scan

The Results of MIBG Scan The Results of MIBG Scan are here!  Is it sad to say this is a bittersweet result?  On one hand, Neuroblastoma (NB) is the cause.  Amongst the cases, between 50-80% are NB related.  Some cases are being identified as something that happens after a virus.  Also, after vaccines.  Lastly, autoimmune. …

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Harsh Reality of Raising Kids with FASD

Harsh Reality of Raising Kids with FASD This is a tough post to write but so many thoughts on the Harsh Reality of Raising Kids with FASD is twirling through my head.  Also, both of these kids have Reactive Attachment Disorder.  Again, in FASD and RAD, they are on opposite ends of the spectrum.  It …

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What is an MIBG Scan? According to the Cleveland Clinic, “An MIBG scan is used for localization of known or suspected neuroectodermally derived tumors, including pheochromocytoma, ganglioneuroma, ganglioneuroblastoma, paraganglioma, carcinoid tumor and neuroblastoma.” This is something that I have requested from several hospitals but was always told no.  Now, we are embarking on a new …

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OMS Warrior Playing Baseball

OMS Warrior Playing Baseball.  Who would have EVER thought that this boy would be able to play t-ball?  Not me!  Well, I take that back, we were going to have him play BUT he was going to use his wheelchair or gait walker. Wheelchair vs Gait Walker This time, last year, he was in a …

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