Medical Issues

The Results of MIBG Scan

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.  These cases can be a result of a virus.  Also, after vaccines.  Lastly, autoimmune.

We know that Hunter had not been sick.  Also, he had not had vaccines since before he came to live with us.  did not have a virus and he had not had any vaccines (this is not something I am going to delve into further).  So, we had NB or autoimmune to differentiate between.

Testing Time

Hunter has every test known to man.  He has had lots of testing.  In fact, he constantly goes from urine tests to MRIs to CT scans to X-rays to the second-largest genetic test there is.  EVERYTHING came back normal.  Well, I take that back.  Everything but 1 thing came back normal.  His Lumbar Puncture (LP) came back with high opening pressure and 5 Oligoclonal Bands.  This means that there is some type of illness present.

Well, Duh.  At the time, he couldn’t even sit up much less stand or walk.

This is what we had to work with.  I had asked a couple of hospitals to do the MIBG scan but all declined.  This last hospital, Vanderbilt Children’s, is the one who brought it up to me.  I was eager.

In OMS world, the longer you are *past* onset, without cancer, the less likely you were to develop it down the road.  We, at the time, were 2 years past the onset of his illness.  I felt confident that he did not have NB.

However.

In my glorified thinking, I think that if he has NB, it is encased.  If it is encased, it is an “easy” surgery to remove it. Once the removal of the NB has happened, the symptoms will be gone and he will be normal again.  Is this the case?  I don’t know, maybe sometimes.  It really isn’t as clear cut as my glorified thinking.

Reality

The reality is that the treatment system is the same.  Monthly IVIG, monthly steroids, and then Rituximab (which did not work for Hunter).  We now have to decide between Cyclophosphamide or Plasma Exchange (Plex).  Since this is not something we are discussing right now, I am happy to set it out of my mind.

OMS is a life-altering condition that will not go away.  It can go into remission though.  Remission can be from cancer or from being so symptomatic with the autoimmune side of life.

Good news:

Hunter DOES NOT have cancer.  My glorified thinking is putting all the pieces back together.  Hunter has been given complete healing through the stripes of Jesus.  This is not a life-threatening condition, in him.

These are all good things!

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Medical Issues

MIBG Scan

MIBG ScanWhat 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 pediatric neuro who actually sat and listened. She read what I brought.  Asked appropriate questions.  Understood where I was coming from and was anxious to jump on Team Hunter!

#HunterStrong

She is allowing me (within reason) to dictate when we start our Dex.  I’ve successfully pushed it from every 2 weeks to every 4.  This month, I’m shooting for 5 weeks.  This, of course, is dependent on how Hunter’s body reacts.

In conjunction with that, we are continuing with PEMF therapy, horse therapy, Symphony of cells protocol, IVIG monthly, and the maintenance that comes with all that.  We are also heading back to St. Augustine for a one-day treatment.  Lots of holistic treatments mixed in with traditional medications and therapies.

MIBG Scan

I digress on the topic.  Today (June 13th), we (Hunter, Alyssa, and I) heading to Nashville for his injection.  He has to have that solution in his body the day before the scan.  We have also done pre-scan medication of Lugol.  It is a 5% Iodine solution that is taken the day before injection, the day of injection, and the day after injection.

Tomorrow will be scan day.  We should get the results back on Monday (I hope).  This is going to rule out ANY Neuroblastoma.  The longer a person is past onset of symptoms without cancer showing up with MRIs, CT scans, and blood work…the less likely that person is to actually have cancer.  Therefore, it is dubbed “autoimmune.”

What We Have Operated On

This is the assumption our past doctors have been operating on.  We are 2 years past onset, why take the time for this scan?  Well, Dr. James is little miss Johnny on the spot and she wants to completely take that thought out of our heads and hers.  I’m all for proactive, rule things out, kind of things.

In Lieu of the Scan

We came on down and went to eat.  After eating we headed to the Nashville Zoo.  It has been such nice weather.  We got his wagon and off we trekked through the other side of the bamboo shoots.

It was so nice.  When we got back, we couldn’t swim because we are trying to preserve his IV for tomorrow.  Instead, we ordered pizza, played, and watched a marathon of Chopped shows.

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