Category Archives: Opsoclonus Myoclonus Disorder

The Chair

Cassidy's Cause Therapeutic Riding Academy

The Chair

There was a lady at Horse Therapy who has “the chair.”  My friend, Dara, has wanted Hunter to experience “the chair” for a while but has never had the opportunity to do so.  Yesterday, she was there and so was this infamous chair.

I spoke with the lady about it and what it does.  Basically, it targets the bad or sick cells in your body and does little electrical pulses until it is resolved and then moves onto the next spot.  I’m all about holistic treatment.  Within 5 days of an “out of the box” treatment, my son was out of a wheelchair and walking.

Questions

She asked what was wrong with Hunter and I began describing his onset/symptoms/treatments, etc.  With wide eyes, she said, “you know entirely too much about this condition.”  Yes, I do.  I am a leading expert. When you are 1 in 5 million and he is “rarer than the rare 1 in that 5 million,” you tend to gather and retain all the things that are said to you.  I am an expert.

Bring on the Chair

Lori asked if I wanted to sit in the chair to experience the effects of it.  I agreed.  She turned it on and told me to tell her when I felt something.  Uhm, I felt nothing.  She kept turning it up, slowly, because that is protocol.  I asked what it was supposed to feel like because I felt nothing.

She explained that it is a pulsing sensation and that at some point it is going to get uncomfortable.  Okay, well, again, there was nothing.  Eventually, she got it turned all the way up and I could tell that it was pulsating because I could see it in my chest.  She laughed and said I must have a high pain tolerance because she does not even go that high with a horse.

Destination Relaxation

I enjoyed my time in the chair.  It almost felt like a baby kicking but in my back.  The pulses started in the exact places my massage therapist (and chiropractor) tackle. It is the worse parts of my back.  I thought it was pretty cool that it attacked that first. It was incredibly relaxing.

Now it is Hunter’s Turn

Hunter hopped off Linda, the horse, and hopped into the chair.  I was shocked that he even sat in it.  She started off small and then kept turning it up. As I was rubbing his head, trying to get him to lean back, I asked if he felt anything.  He has a resounding NO.

She kept clicking and clicking.  Her eyes kept getting bigger and bigger.  Before long, she had reached my level.  She said that his pain tolerance must be very high and that she does not even go that high on a full grown horse.

Apparently Though

Hunter LOVED the chair.  He sat in it for about 40 minutes.  When I said he needed to get up so we could go and cook supper, he said he wanted to stay there forever.  He was so relaxed when he got up.

The strangest thing happened on the way home, he SLEPT.  He *never* sleeps in the car. He slept the whole way home.  Mindboggling.  Today, he has been hyper and busy and feeling good…then, he took another nap.

I don’t know if this thing is for real or not.  It works on horses and it has worked on other people.  I will, when Lori is at the barn, have Hunter sit in it to get a weekly/biweekly pulsing session done.  Things work overtime and consistently.

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Reflecting on my Kick in the Gut

Reflecting on my Kick in the Gut.  I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health.  It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics.  It has been a bur in my saddle.
No One Will Help
I called our local hospital, and they said they could do it.  Yay.  Then the nurse from our doctor’s office called and said she was facing resistance.  She said that because Hunter is “medically fragile” that they will not see him.  He is not a do therapy and get better kind of kid.  He is a do therapy and maintains his status type of kid.
Dirty Words
I’m surprised I heard anything past “medically fragile.”  I think I did miss a lot because those 2 words, used in a sentence with my son, cut me to the core.  The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. Dependency on medical care for which daily skilled (nursing) intervention is medical.  Maybe I knew that deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.
Kick in the Gut Truth
The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition.  I sit here and watch him, and I see that he shakes.  That he struggles with walking.  Also, I hear his speech issues, food issues, his eye twitching.  He truly is medically fragile.  There is no cure.  There are massive drugs he has to take to maintain his health, but those drugs have massive side effects that have adverse effects on his health.  It is a double-edged sword.
1 Thess. 5:16-18
This disease is horrible.  It is uncertain.  It is incurable, by man’s standards.  I hate it but I’m reminded of my sweet friends Mr. Cliff and Ms. Jan…..as I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine*  It does not say “be joyful when things are great, and everyone is behaving and healthy.”  It says to be joyful ALWAYS.  Be thankful in ALL circumstances.
So…what am I thankful for?
He is alive and has an amazing support group.  During his treatment with his misdiagnosis, he got the same nurse.  I am able to keep his birth mom up-to-date.  My family and the support we have received.  Our church family and prayer warriors.  My kids who see a need and meet it.  I guess There is so much to be thankful for, even on the bad days.

Reflecting on 3 Month Post Diagnosis Stuff

Reflecting on 3 Month Post Diagnosis Stuff.  This was written back in September 2017.  It has not been the easiest time, but we are Going the Extra Mile.  We spent about 2 weeks, at onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital). During those 2 weeks, he had 8 high dose steroids treatments and 1 high dose IVIg treatment.  Once we were released, we went back a month later, and we got the first Rituximab treatment.  In 2 weeks, we went back to get the next dose of Rituximab.  We will go back in January to get the 3rd dose.
Round 2 Rituximab
When Hunter had his second round of Rituximab, his first round was 2 weeks prior, and it did not yield the results that we had hoped it would yield.  We did not see Dr. Sweeney (or any doctor for that matter) during that first round.  This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.
I was able to ask many questions to Dr. Sweeney.  I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand.  He has a heart for children.  Any single man who knows the theme songs to ALL the Disney movies and ALL the characters of each of those movies is a man who is in tune with his audience of kiddoes.
Trying to Understand
I understood that we would know if this course of treatment was going to work within the next two weeks.  Hunter still has residual steroids in his system, as well as, IVIg.  In two weeks, though, all of that should be out of his system, and all remaining B cells should be killed off by this last Rituximab treatment.  Then….we will either see improvement (aka remission), or we will need to rethink the course of action that we need to take.
Staying Healthy is a Priority
In the meantime….we know his immune system is comprised.  To help with that, when we are out in public or around sick people, I went on the hunt for some face masks for children.  Sadly, I could not find any.  I did get a few adult sized ones from my son’s orthodontist, but nothing that would fit his face.  Finally, I went to my “go to” place…Amazon.  Oh…I love Amazon.  I found what I was looking for and they work perfectly (though he hates them).
Hospital PTSD
My next course of action was to help ease his anxiety about going to the hospital.  Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/manhandled until I just about went all Hulk on them. Then…we met the IV team.  Oh.  My.  Stars.  Let me just tell you….they are all angels sent from heaven.
Going the Extra Mile
Maybe I went overboard….maybe I am coddling him. He is 3, my baby, and he did not ask for any of this to happen.  At this point, the child will get whatever he needs to help him through this process.
What the Meds Do When they are Needed
The steroids were to get the inflammation down.  The IVIg is immunotherapy, and it replaces the good stuff in his body.  Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain.  The first dose killed off the majority of them.  The second dose killed off the baby ones.  We were hoping remission would come after that second dose, but sadly, it has not.
Not Much Change
Hunter still walks around like a drunkard, basically.  He walks with his feet out, like a duck to steady himself.  Stairs are still a challenge.  Mornings and after naps are still filled with uncertainty as to how he will be.  He is more tremulous during those times and when he is doing something that has focused movements with his hands (i.e., holding a fork/spoon, pencil, coloring, etc.).
Rages
He is still highly emotional.  I know that he is 3, but it is almost like have 100 kids that are 3, at the same time.  It is exhausting.  He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well. There is not an in between. His eye is still turned in, and they still twitch….all the time.  It is so weird.
Treatments
We start monthly IVIg treatments next month.  Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours.  We would like to get a mobility service dog for him.  Also, we still need to raise money to redo our downstairs bathroom.  This will make it more accommodating to him when/if the need arises for constant use with his walker.
I do not know what the future holds, but I do know the One who holds the future in His mighty hands, and I will choose to trust and obey.  Blessings.

Reflecting on The Rogue Zebra That Has Been Caught

Reflecting on The Rogue Zebra That Has Been Caught

 

Reflecting on The Rogue Zebra That Has Been Caught.  After almost 2 weeks of being in the hospital and having every single test run on him, we were beginning to feel the effects.  I was blessed by so much.  We had great nurses, attentive doctors, and my sister arranged for her friends to bring us food and snacks.   My niece came visited, gave me breaks, brought food and toys.  Bug, my daughter came up and brought me coke and toys for the baby.  My uncle’s wife came bearing TONS of food and toys for Hunter.  I was blessed BUT we wanted a diagnosis.

We wanted answers to so many questions.
  • Why was he shaking so violently?
  • His eyes twitching all over, why?
  • Why is he sleeping so much/not sleeping at all?
  • Walking, why can’t he?
  • Why did he scream when I stood him up?
  • Is he in pain?
  • Why couldn’t he sit up?
  • He leans to the left, so bad, that I had to barricade him in, why?
  • Why couldn’t he chew/swallow?
Let’s Make Our Legs Work

I got him on the floor and we went for our daily “let’s make our legs work” walk around the nurse’s station.  While we were walking, we saw Dr. Sweeney and his team pow-wowing about our case.  I told them all not to talk to him or make direct eye contact because now, he was terrified of all people in scrubs, with white coats, or stethoscopes. Everyone just kept on talking and while they were talking, they were watching. We had to walk in between the doctors to get through, so it gave everyone a great idea of how he was progressing or regressing.

Stopping to Say Hi

Hunter noticed Dr. Sweeney and he stopped and spoke to him.  He told him that he liked him and he needed to come and visit him sometime (cue heart melting)….it took him a while to get that sentence out because his voice quivers and he has to really think about his words before they come out of his mouth.  Dr. Sweeney said that he was on the way and by the time we got to our room, he would be right behind us.

So, we headed back to our room.  We made it to the chairs outside of our room because when we approached our door…he began to cry saying he wanted to go home and not go in there anymore.  Broke my heart.  I didn’t know what to tell him.  We parked outside the room and watched the people walk by to help ease him.

His Diagnosis

Dr. Sweeney and his crew came up and I told him of his regressions. That by the third high dose steroid, he had stopped tremor-ing so badly, but that he is sort of stalled.  He still struggles with walking and his eyes were everywhere.  With his symptoms list, with his regressions, with his body’s response to the steroids, Dr. Sweeney was completely confident in diagnosing him.  He said that the entire neuro team had gotten together, that morning, and reviewed everything, and collectively, they came up with this diagnosis.

Hunter was diagnosed with Opsoclonus Myoclonus Syndrome or Dancing Eyes-Dancing Feet Syndrome. It is INCREDIBLY rare, about 1 in 5 million.  There is not enough known about it to have a cure, so this is something he will have for the rest of his life.

More Tests

We will be doing MRIs, CT scans, blood work, PET scans and urinalysis often to make sure there is not minute cancer hanging out.  We have had 8 rounds of high dose steroids, 1 round of IVIg immunotherapy, and will have a total of 3 rounds of Rituximab.

So far…we have seen little change.  We have good days and bad days.  We are all adjusting to our new normal and learning life.  I’m thankful to the doctors who heard me and were proactive in finding his diagnosis.  My prayer, of course, is for complete healing.  For more on this post, please go to Spotting the Zebra post.

Reflecting on Spotting the Zebra

Reflecting on Spotting the Zebra

Reflecting on Spotting the Zebra.  Dr. Ehert has been so good to us.  So thorough and she even fielded questions from my sister, Hunter’s grandma. She really wanted us to be discharged to Frazier Rehab, across the street, for an indefinite amount of time.

I just want to go home…even for just a night.

Realize, I needed to see my kids, my kids needed to see me and Hunter.  I needed my shower, my bed…just for a few hours.  We had declined the offer to go to Frazier and I set up Speech (he had lost some of his speech), Occupational therapy, and physical therapy.  If the doctors were not satisfied with his progress, then we would go.

The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had B) there were literally no more tests to run C) I begged.  So, without a diagnosis…..we hustled and got out of that hospital.  We drove for about 3 hrs and then my phone rang. It was Dr. Ehert.  She said that we left without seeing her.  I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.

Then….there was a pause

She asked me how far out of Louisville we were.  I told her that I was about 3 hrs from there and a 1/2 hour from home.  She explained to me, so gingerly, that one of his test (1 of about 200) came back positive and that we needed to turn around and get back up there to start steroids.  I asked her how urgent it was and if I could just go home for a bit and she was hesitant.

She said the sooner they start it, the sooner he could get better.  The treatment was to last for 5 days.  She never mentioned a diagnosis but there was a definite concern in her voice.  I told her that I was going home.  There were things I needed to do like getting a shower, seeing my kids, and sleeping in my own bed. In the end, I would be happy to leave in the morning and as long as his life was not in danger.  That is what I was going to do.  I had to mentally prepare myself to be up there for that long, again.

We got home and it was sweet.

He was so excited to see everyone and everyone was excited to see him.  I jumped in the shower and blew off all that nasty hospital funk.  It was glorious.  I slept so well that night.  About 9 am the next morning, we headed out again.  I felt more prepared.  I knew what to pack and was mentally ready.  We got up there and we were able to bypass the ER and go to quick admitting.  They were expecting us.  We met up with the beloved IV team again and we got an IV started for him and for Superman 🙂  They told me that they were going to give him high doses of steroids for the next 5 days.

Steroids are supposed to make you eat and make you a bit grouchy…I could not get this child to eat anything.  He wouldn’t even eat a cookie.  He did sleep some but it was restless.  After 3 doses of steroids, he was able to stand on his own and maybe take a step or two.  His tremors lessened.  His voice was not as shaky, but his eyes were everywhere!

Phone Call from the Beach

Early the next morning, at 1 am, I had finally shut my eyes for a moment and in comes the nurse.  She said that I had a phone call.  My thoughts are “who on earth is calling me, on a nurses cellphone, at 1 am in the morning.”  It was Dr. Puri.  He is a pediatric neurologist and he was calling me from Myrtle Beach.  I asked him why he was calling me while he was on vacation and he said that he wanted to ease my nerves.

He is a phenomenal doctor.  I have been told that he is well loved, well educated, and he has seen some bizarre things.  There was an assurance that there was no worry of childhood MS, which is what I thought he might have because of his symptoms.  He said because no lesions were found, anywhere.  That it is highly unlikely that he has this.  He said he believed it to be another autoimmune disease and he assured me that they, as a team, would figure it out.

New Neuro

In comes Dr. Sweeney.  I came close to dismissing him because he looked the age of my son, I thought that he was a youth volunteer.  He said that the team had assembled and discussed our case.  They wanted to run more tests but felt pretty confident in the diagnosis.  He basically kicked every other doctor off the case because this was strictly a neuro case and there was no need for a bunch of Drs telling me their opinions and interrupting our day when they didn’t need too.

We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region. They knew what they were looking for.  We did a follow-up urine test and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood.  I put my foot down, at that point and told them that if ANY IVs or blood draws were necessary…ONLY the IV team would do this for me.

All Tests Were Normal

Once all these tests came back (normal, I might add)…Dr. Sweeney stopped the steroids (he had had 8 doses of it) and he started him on IVIg (immunotherapy) for about 6 1/2 hrs.  He said when that was finished we could go home.  There was nothing else for them to do or any more tests, at the moment, that they could do.  I could do the same thing here as they could there.

They did want me to take him to Frazier for a couple of weeks.  I explained that we already had therapy and equipment in place and they were satisfied with that, for now.  We would readdress it when we came back for our follow up appointment.  As of now, all tests were clear except for high pressure with the spinal tap and that test was positive for Oligoclonal Banding.

Spotting the Zebra

Dr. Sweeney captured the rogue zebra in a third diagnosis but changed his mind to a fourth diagnosis.  That fourth diagnosis was Ataxia Telangiectasia Like Disorder.  Then, we learned a year later, that he DID NOT have ATLD1.  So, the fifth diagnosis was back to the third diagnosis of Opsoclonus Myoclonus Syndrome.

As I am reflecting on spotting that rogue zebra, are you confused yet?  I am.

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Reuben Schwartz Amish Iridologist

Reuben Schwartz Amish Iridologist

Reuben Schwartz

Here is a bit more information on Reuben Schwartz Amish Iridologist.  I had heard of him a long time ago.  In the busyness of life, I just let the knowledge slip my mind until my brother brought him back up.

This time, I did my homework.  I did some research and found great things about this man.  However, getting an appointment is not simple and takes time.  Patience is definitely a virtue.

At the point we saw Mr. Reuben, we had been on the Opsoclonus Myoclonus Syndrome journey for almost a year.  Sadly, he had been really bad a few months earlier.  He had been in a wheelchair from about April 2018 to June 2018.  That June, we had been to our first naturopathic doctor.

Eye opening.

I will post more on this treatment in another post.  So, by the time we got to Mr. Reuben, he was out of the wheelchair but still tremulous.  Frankly, I was curious.  The things I read about him were pretty good.

My Experience

I will not write too much about Hunter’s because he is not old enough to tell me his thoughts.  However, I will say that 2 people, thousands of miles apart, one massively educated and wonderful…the other not educated and wonderful…said the same thing.

Getting an Appointment

In order to get an appointment, I wrote him a letter.  This is the only way to get an appointment and assure you can get in to actually see him.  You can “show up” but those that have appointments get first priority.  If you show up, you take the risk of not being seen.  He is a busy busy man.

If you are interested in getting an appointment, you can email me with questions about my experience.  My email is thebarefoothomeschooler@gmail.com.  Also, you can write him (this is public record) and request an appointment.

Address

Reuben Schwartz

1205 Radure Rd.

Hestand, KY  42151

Head’s Up

My GPS took me on down the driveway to the house at the end of the road.  That is his son, Abraham’s house.  Abraham is one of Reuben’s sons.  He is sweet…his family is pretty sweet, as well.  He told me that Reuben’s place is the first place, on the left.  It has a full-length front porch and the building is fairly new (compared to the other houses).  There is little to no cell signal once you get into Amish country.

Walking In

Pulling up and parking in the grass was my first moment to soak it all up.  We got out and there was a couple with several children sitting on the full-length front porch.  They have been going to Reuben for years, even before children.  Now, they come every year for a quick checkup.

We walked in and there were several people there, waiting.  See, you can just “show up” but first priority goes to those with appointments.  He has a predetermined amount of people he sees within a day, so keep that in mind.

Hunter explored and I took it all in while filling out Hunter’s paperwork.  I had no intention of him looking into my eyes.  Mr. Reuben came to the door and he is a thin, lanky man with a beautiful white beard.  His eyes were this piercing blue.  He smelled of Melaleuca and love.

Heading to the Office

I asked him how he came to do this.  He laughed and said that it had been a part of their community for as long as he could remember.  Also, he said that, when he was younger, he thought it was witchcraft and that he stayed far far away from it.

As he grew older and continuing to see this miraculous healing (he loves Jesus, by the way), he became intrigued and began studying the practice of Iridology.  Once he realized that history of it and the reality of how it was helping others, he dove right in.

Looking Into His Eyes

Now, he knew of Hunter’s diagnosis, though he had never heard of it.  Trying telling an Amish man to look up your Youtube channel.  LOL It was like a blank stare came across his face and you could hear crickets chirping.  He politely said he had never heard of the You Tube.  I laughed.  He laughed.

Once he looked into Hunter’s eyes, he said that he was riddled with parasites.  Realize I had just been to St. Augustine and the parasites were identified at that session, as well.  He said that he could see parasite scarring (where some had died) and then he saw active ones.

He smiled and said that my son was not going to die…we were going to get rid of the parasites.  With the herbs/supplements we got from him and the high/low-frequency acupuncture and bio-impedance we got from SonRidge, he will quit shaking.  I was in awe that both man, brilliant in their own rights, said the same thing.  Amazing.

Then It was Me

Once again, I took the bull by the … well … nevermind, I asked him to look into my eyes.  All he knew was my name.  The first thing he said was “when did you get your uterus out?”  I told him a year ago.  He said, “well, you still have your ovaries, right?”  I asked how he knew that and he simply said he sees it in my eyes.

Then, he put his crucible and little utility flashlight down and backed away from me.  He stared at me for a minute and he paused.  He said “uhm, ma’am, your, uhm, your ovaries…well, they are angry.  Do you have trouble sleeping, trouble with your moods, etc.?”  I said that I did and he told me he would fix that.

He then asked how long I have had dizzy spells (diagnosed with Meniere’s at 19 yr old), how long I had had high blood pressure, how my stress level was.  I mean he nailed me.  Everything.  I was blown away.

Herbs and Supplements

They are not cheap, but they last for a long while.  What they do not sell at the office, there is a little shop at the end of that road.  I can’t remember the name, but you pass it as you go up to Reuben’s.  They have the rest of what you might need.  Unlike Reuben’s, they do take a credit card and are super friendly.  They will tell you what you need and what you really don’t need or give you cheaper options.

Payment

Mr. Reuben is FREE.  He does have a donation box, in his office, if you feel led to donate any money for his time.  Also, herbs and supplements are not free.  They do not take cards, so bring cash, if you should choose to buy anything.

If you go back, you can take your empty bottle and they can fill that bottle back up.  They are big on recycling and the environment.  They also have some veggies/popcorn/jam and other things that they grow and sell in the office.

Disclosure

**I am in no way a doctor.  All I know about Iridology I have read/asked.  I am not telling you to go the route that we went with naturopathic doctors.  Also, I am not telling you to disregard your regular doctor, his advice, or stop taking your medications.  This is 100% my experience in my own body.  Also, it is my personal experience and knowledge with my son and his condition.  We still seek the care of our regular PCP and Neurologist.  Please seek out your doctor’s opinion, research yourself, and make an informed decision.  All opinions are my own.**

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Reflecting on the Rogue Zebra that is on the Loose or is It

Reflecting on the Rogue Zebra that is on the Loose

 

Reflecting on the Rogue Zebra that is on the Loose or is it?  We got to the Norton’s Children’s Hospital ER, and I realized that the calmness I once felt was now moving into the “they are paying a whole lot of attention to us” moment and “oh crap.”  Nurses were moving quickly.  We were seeing attendings and not interns or residents.  My mama’s gut was screaming, but my outer shell was trying to convince my inner shell that things were okay and they were just overly attentive.
All Eyes Were On Hunter
Without much of a blink, I had the ER attending, the neuro attending, the peds attending and there was one other one, but I cannot think of who that person was.  They got him in a gown, I blinked, and the next thing I knew they were putting in an IV, drawing vials upon vials of blood, testing his urine.  It all happened so fast.
Explaining the Last 2 ER Visits
When I talked to the attendings, I had explained that we had just been to Vandy and what they had said.  I told them that I may be overly cautious, but it seemed Hunter was getting worse.  All I wanted was two doctors, two different hospitals, two different states telling me the same thing.  Once that was done, I would be good to go.  The last thing I wanted to do was to stay.
Dancing Eyes
I blinked again and when I looked up…Hunter’s eyes were dancing all over his head.  It reminded me of looking at one of those reptiles that had a third eyelid.  Quickly, I got up and hung my head out the door for the attending.  I stood, where my face was not visible to Hunter.  Before that moment, I was cool as a cucumber this whole time.  Sadly, when that third eyelid thing had to be fixed….that scared me.  That’s when things started moving a bit faster.
Not a Normal Mama
I am not the type of mama that is always at the hospital or doctors office for every single snot rocket, complaint, bent finger or toe…or even blood gushing.  I just do not subscribe to that in my life.  If mama is calm… the kid is calm….then things can get done and assessed.  I told these people that.  I apologized for even taking their time because I was *sure* that everyone was going to agree.
They didn’t agree.
Not even in the slightest.
A 6 Day Stay
My, previously healthy, 3-year-old was poked, prodded, sedated, infused…..I was alone (Big Daddy was home with the other kiddos), with a 3-year-old, surrounded by a bunch of doctors, residents, interns, students, and nurses.  There was not one person who would give me a straight answer.  One of the doctors, I finally cornered, and I told her that I’m a nice person.  I tolerate a lot.  I am also a forthright person, and I do not beat around the bush.  The one thing that can get a bee up my drawers is when people are dishonest or dancing around things for me.
I understand that they do not have all the test results in.  I know that they do not know, for sure, what this is.  What they do know is what tests they are running and why they are running them and what they are ruling out.  That is the stuff I want to know.  I will not lose my cool.  There will not be a time when I will panic, faint, cry, or scream.  My job is to be a student of whatever is going on.
Student Doctor
One sweet little student doctor, who looked like the age of my son….he stepped out of his box.  He got down on Hunter’s level.  This sweet man played with him, connected with him, and he was genuinely concerned about him and about me. There were days when he would stop by and ask random questions because he was going home and researching.  Out of his graciousness, he made me a list of all the tests that were done.  Which tests were pending and which had results (and he gave me the results).
Also, he took the extra time to write down what disease each test was for and what was ruled out and what they were looking for.  That list became gold to me.  Every time a nurse came in, she would check to see if a specific result had come in.  This is what I needed.  This calmed my soul, and I felt a little bit empowered and in the loop, so to speak.
The Hospitalist
There was another doctor, she is a pediatrician and was the hospitalist for the week.  She slammed me between the eyes.  This doctor said that he would not get better.  Her guess was that it was an autoimmune disease.  They could not pin it down, but the fact that every single day, he was getting worse and much weaker.  She said that I needed to see the gravity of the situation.  I need to make adjustments, at home.  I needed to set up therapy.  They really wanted him in Frazier Rehab for an indefinite amount of time.  I was going to be the one who had to feed him, we had to get him fitted for a wheelchair.  This was our life, and I needed to prepare myself.
Time for a Meltdown
I believe after that conversation was the first time I truly had a meltdown.  Amazingly enough, I did not do so in front of all the doctors.  I waited until they left.  Before my moment, I got my son watching a movie.  Then, I stepped into the bathroom and called my sister, Hunter’s grandma.  That is when I lost my composure.  I could hear Hunter in the other room sweetly saying “mama don’t cry.  Come out of the bathroom and don’t cry.”  I came out….washed my face….and we watched Cars for the thousandth time.
Choosing Joy
I purposed not to let this whatever dictate his life or mine.  Adjustments…fine.  I can do that.  Therapy?  Fine…I can do that.  When the doctors came to do rounds again…there were about 12….they were timid around me.  They would not look me in the eye.  I guess they thought I was going breakdown.  There was a moment…my moment was over.  I told them that even in times like this, I choose joy,  According to God, this would not defeat us.  This was just a part of our story.
I explained that these doctors will see something similar to this, in their future.  That when they do, they will remember Hunter.  Hopefully, they will know what tests to run and what to look for.  Also to realize that God will be glorified.  The tone in the room changed….they began to tell me they were praying for us and encouraging me saying that God can still do miracles.
Next, we meet our Neurologist team.  The rogue zebra is in their sight.

Reflecting on the Beginning

There is a Rogue Zebra on the Loose

Reflecting on the Beginning of our journey.  On June 6, 2017, that was the day my sister had called about her former neighbor saying that the Lord placed my name on her heart and that she was praying for me.  Little did I know, this would be the last day my son would walk.  Here is more on The Thoughts In My Head.

June 6, 2017; Reflecting on the Beginning

On that day, I had been with my Lady.  I knew her family was coming into town and I wanted to give them time together.  I took all my kids to my son’s baseball game.  It was a hot evening, some storms rolling in but it was something I knew everyone would enjoy.  Hunter had not been to a baseball game since we played last summer.  He was older now (was 3 in February) and I knew he would enjoy it more.  He certainly did enjoy it. Charmed everyone around them and then he ate their popcorn and nachos.  He cheered with gusto!  He was quite the comic relief for the game, and he loved every minute of it.

Our Life is Turned Upside Down

I had let the earlier conversation leave my mind until the next day….that was the day that the world stopped turning for our family.  On June 7, 2017, Hunter was highly emotional, and he seemed to be doing things he shouldn’t and getting in trouble more than usual.
The boys, so kindly, took him to their room and they all played legos while I did some paperwork and caught up on phone calls.  I could hear the baby hollering at the boys and, of course, they gave in more times than not.  I kept hearing my oldest son saying “stop shaking, you are not in trouble, here take the Lego…stop shaking.”

Stop Shaking.

When the baby would get excited, do something he was not supposed to do, or was getting in trouble, he would shake his arms and legs.  I assumed this is what was going on with him.  I figured the boys were tired of dealing with him, so I called him to come back into the dining room with me.
He screamed while walking down the hall because he wanted to be with the big boys.  He refused to stop crying, screaming, and shaking so I put him in time out on the step.  There, he screamed and cried even louder.  He continued to shake from head to toe.  I told him he needed to stop and that as soon as he did, he could get up.  Finally…he quit, and he began playing with some of his toys.

The Nap that Changed Everything

The boys ate lunch, and then the baby went down for a nap. This is how it has been since he moved in with us when he was 21 mths old.  He slept till about 4, which is normal.  My oldest son went to get him up from his nap and he usually carries him downstairs and sets him in my lap…this day was no different.
We snuggled and talked about him dreaming about his pillow.  I hugged him tight and said that he needed to sit on the potty, but first, could he hand me his underwear.  It was laying in between me and the potty chair.  The potty chair was about 10 steps away.  I stood him up, and he began to wobble and stumble, and he eventually fell.  It scared him…it scared me…it scared the boys.

And It Begins

One of my other sons noted that the same thing happened yesterday after a nap, but it quickly resolved, and no one thought to tell me.  I got up and picked him up, thinking his legs or feet were asleep.  We snuggled a bit more, and I rubbed his legs.  I stood him up again after about 5 minutes, and he fell over again.  He could not stand up.  My heart began to race, and I didn’t want to freak out.  I had my oldest sit, on the floor, a few steps away from me.  I tried to get the baby to walk to him.  He couldn’t do it.  He could not balance, he could not stand alone, he could not take steps without being assisted.

Heading to the ER Misdiagnosis #1

Immediately, I went to gather my stuff, get a bag ready for him and I called Big Daddy.  I said he needed to meet us at the ER because the baby could not walk.  I did not know why, but we needed to figure out what was going on. While on my way there, I called my oldest sister (the baby’s grandmother) and had her meet us there, as well.
As we were driving the 30 minutes to the hospital, the baby kept saying that his legs would not stop shaking.  It was scaring him and me.  We got to the hospital, and they did a CT scan of his brain, which turned out normal.  They drew blood…WITHOUT GLOVES….mind you.  The doctor was throwing around words like Muscular Dystrophy and Cerebral Palsy.  He then settled on Strep (though he tested negative)..gave us Amoxicillin and sent us on our way.

We left that hospital knowing our baby was struggling with walking.

I made calls on the 30-minute drive home.  I called a friend whose daughter had a freak illness and ended up paralyzed when she was a little girl.  She has contacts, and she is not afraid to use them.  Also, she is a pit bull….this is why I like her.  Thankfully, she made some calls, talked to her daughter’s neuro people and arranged for a brilliant doctor to hear our story.  I also called another friend who is now working in the neuro world.  I gave her what all was going on, and they both said…get that baby to Vandy.  Do not let grass grow under your feet.

Heading to Another ER

We got home, made arrangements for our other children, packed bags, and we drove 2 1/2 hours to Nashville to head to the Vanderbilt’s Children’s Hospital.  Once we were there, we were briefly admitted (we had gotten there in the middle of the night).  They wanted to do an MRI on him, and no one would be there till morning, so we stayed.
They ran some routine blood tests, did his MRI, and I asked for them to do a spinal tap or an MRI of his spine, and they declined to say that it was not necessary.  As we were there, the baby began to exhibit other strange behaviors.  He would stiffen out his leg when he walked, almost like a toy soldier.  He was shaking all over and could not sit up unassisted.

Misdiagnosis #2

The MRI revealed nothing, so the doctor just diagnosed him with Acute Cerebellitis Ataxia.  Nothing more, nothing less.  It was brought on by a virus, though he had not been sick.  We were told that he was sick, at some point, and we simply did not realize it.  We.  Did.  Not.  Realize.  He.  Was.  Sick.  He is 3….a blind deaf-mute knows when a 3 yr old is sick.  We were to come back if there was a grand mal seizure or fear of death.

Being Discharged

When we were discharged…though his tremors were getting worse and he still could not walk…what sticks out in my mind is the flippant way we were treated by the doctor and how my requests were dismissed.  Also, what stands out is the stellar nurses we had.  Our nurse kept telling us that we did not have to leave if we did not want too.  That she could not believe that we were being discharged considering the state of our child.
I knew, had we stayed, we would not have gotten good care because we were going against what the doctors already had said.  We thanked our nurse and assured her we were not done searching.  He was a healthy little boy one day prior, and now he could not walk or stop shaking.  Something was wrong.

Heading to Another ER Misdiagnosis #3

We head back home.  I still did not feel settled in my soul.  After more phone calls and reaching out to people I know in the medical field…the baby and I headed to Louisville, which is about 3 1/2 hours away.  My goal was to get two doctors that stated the same thing.  If these doctors stated that he had Acute Cerebellitis Ataxia, then I would accept the diagnosis and wait.  Big Daddy stayed home because I did not feel he needed to come. I was hoping that all doctors would be on the same page.

Little did I know……

Related Posts:

Rogue Zebra? Or Not?

Content a 7 Letter Word

There is a Rogue Zebra on the Loose

Reflecting on Getting Fitted for a Wheelchair

Getting Fitted for a Wheelchair

The Wheelchair was fitted for Hunter.

Getting Fitted for a Wheelchair.  This is what Hunter and I did today.  My heart simply aches.  I know this is for the best, but this is cruel and unusual punishment for me.  I guess I should be thankful, but right now, I’m just pissed.  There are so many things I’m pissed about.  The doctor(s) that misdiagnosed him, the loss of function, this stupid chair.

When Life Knocks the Wind Out of You

I guess one just moves on one breath at a time.  Somedays, I find it hard to breathe, though.  There are moments that I just sit and cry.  I simply do not know where to go from here.  Today, I just breathe.  Here are more thoughts on Getting a Second Opinion, and dealing with the egos of other doctors.  It is exhausting.  All people should just want the best for this little boy.  However, pride gets in the way every single time.

UPDATE

This post was made in 2018.  Now, in May of 2019, I am happy to say that we are wheelchair, gait walker, and wheelchair ramp FREE.  His legs are getting stronger, by the day.  Sadly, his arms/hands are now shaking.  It seems as if the disease is picking and choosing what part of his body it will attack.  Furthermore, he is starting school in the fall.  We hope he can stay in but we do have to live in reality.  On the one hand, we want him in school.  On the other hand, we know that his immune system will be challenged.

 

Reflecting on Second Opinions

Second Opinions Good or Bad

Reflecting on Second Opinions.  When it comes to my health…I ignore 99% of it.  The 1%, is usually the kicker.  I am down for the count until I can learn to listen to my own body.  Problem is, is that I do not have time or energy to listen to my own body because I have about 8 other bodies to be concerned about.  All that being said…my health is better because I’m learning how to take care of myself and I’m seeking guidance from our physician….when I’m there for another child 🙂  I’m sure that thrills my dr!

When It Comes to my Child

Then, there is Hunter….diagnosed with Opsoclonus Myoclonus Syndrome.  After, almost 2 weeks (at onset), in the hospital, we got this diagnosis.  This diagnosis was the third and the fifth diagnosis for Hunter.  At the time we were seeking a second opinion, it had been 10 mths.  He was not any better than when we started.  Every day is a struggle for him.  Every day there is a new thing.  Every day, there is a new challenge.

First Kindness, Then Not So Much

Our Dr was very kind to Hunter…he listened and responded to emails and calls.  I felt comfortable that we were a team with the mutual goal of working towards getting Hunter in remission.  Lately, however, I feel like it is me doing my thing and he does his thing.  I know that he is a good dr and I do not question the diagnosis (so stupid, I should have pushed for genetic testing).  I just want more and I want answers.  Simply stated, I want to understand.  The need for me is that I want it explained to me 1005 times so I will finally get it.  I read through 1300 pages of hospital records.  In my reading, I took notes, made charts and asked questions of my dr friends.  Yet, radio silence on our doctor’s end.

Did I Offend Him?

Somewhere along the line, I must have offended him.  Maybe it was when I mentioned getting a second opinion because the last email I received had the words in quotes “OMS experts” (that statement was made assuming this is what he had).  I must have ticked him off.  That was not my intention.  My intention was to get any and all eyes on my son.  I believe that someone, somewhere, somehow, at some point read something that may be the key to his remission.

Long-Term Effects

See, the longer he is symptomatic…the more brain damage is being done and that is not acceptable to me.  I want to prevent that if I can.  I want him to live a life that is full and one that he understands completely.  I have 2 kids that have brain damage from FASD because of the choices their birthmother made.  It is not my desire to have another child with brain damage as well.  To my core, it hurts my heart, to see him struggle to even hold a spoon or put a lego together.

Second Opinion, Third Opinion, and a Fourth (or Fifth) Doctor

At this point, almost 2 years later.  We have left that original doctor, who gave him his third diagnosis.  At this point, of this post, we did seek a second opinion.  Through a WRONG genetics test, we had a diagnosis of Ataxia Telangiectasia Like Disorder.  This diagnosis was carried for a year.  We chose to stay with this doctor, though I have feelings.  A year after meeting this doctor, we actually went for a third opinion.  This last doctor told us the truth of the wrong diagnosis.  We ended up going back with the third diagnosis.

Confused yet?

I hate to hurt feelings during this process….but this is not about me.  It is not about our current dr.  It is not about this lady we are meeting this week.  It is all about Hunter and his future.  I will do my best to move heaven and Earth and to get him the help he needs.

I stay confused.

 

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