IVIG #6- hanging on to hope



 

What a month.

 

We have really struggled with behavior over the past few weeks.  We broke down and started an antibiotic because all of the typical PANDAS signs of a strep exposure were imminent (highlighted in yellow those we were experiencing):

 

Separation anxiety (type 1* or type 2**) OCD symptoms present Adventitious movements Anorexia

Minor criteria group A (psychiatric symptoms)

Coprolalia Sleep disorders (insomnia, night terrors, refusal to sleep alone in the room) Behavioral regression other than separation anxiety ("baby-talk", temper tantrums, behaviors unbecoming of actual chronological age) Hyperactivity, inattentiveness, inability to concentrate Aggressiveness Significant deterioration in learning abilities (particularly in mathematics) Hallucinations

Minor criteria group B (physical symptoms)

"Puppet-like" spoken and body language; "hyper-alert" look or demeanor Presence of wide pupils particularly during the acute stages of disease Tics (motor, vocal, complex) Urinary frequency and/or bed wetting and/or daytime accidents Demonstrable short-memory loss Fine motor skills deterioration including dysgraphia Increased sensory responses (to smell, sound, light, touch)



 

His separation anxiety was at an all-time high- he didn't have trouble when I went to work and we had a sitter at our house, but when daddy was home and I attempted to leave, it was an eruption of tears, aggression, and "how dare yous."  Even a simple workout or bike ride, he flipped out.  He was slamming doors constantly, and was usually on a rapid hunt to find an electronic as soon as he woke.  His hair twirling was non-stop- his poor head was matted and it looked like I attempted dread locks of some sort.  He attempted to elope any unappealing or non-preferred situation.  We were constantly having to bring him back to a safe area. His sleep patterns were disturbed.  We couldn't get him to bed without a nighttime rage that ended in slamming doors and screaming...and even if he wouldn't fall asleep until 10, he was up between 6 and 6:30 every day...in a bad mood.  His destruction of property was back- the last time the therapists showed up unexpectedly, he ripped every McQueen poster off of his wall to shreds.  I know it sounds silly, but I had tears in my eyes as I collected the pieces of his most favorite possessions...all destroyed in a rage that he probably doesn't remember. 

 

 

So about seven days after starting the antibiotic, while we were on  our trip, we saw the light at the end of the tunnel.  The "how dare yous" and "i'm going to kill you's" diminished- they weren't gone, but they were definitely less.  He woke happy in the mornings and had an overall calmer demeanor. 

 

Day 11, the day after the antibiotic ended, I truly felt like we had made the right decision.  He was smiling more than we had seen in 7 weeks. 

 

It could all be coincidence- he might have had so much trip anxiety that it threw off his internal system and caused an overload of processing that his little body couldn't control.  But in my heart, I know we defeated that strep monster a little more. 

 

Sunday in church, I prayed SO hard for an answer.  I closed my eyes and asked number one for forgiveness...

 

for I had doubted His plan. 

 

I had become angry at Him for allowing this regression to take place. 

 

After I asked for forgiveness,

I asked for redemption. 

I asked for healing. 

I asked for strength.

 

And above all, I asked for hope.  Our biggest fear would be to enter into this last of six subsequent infusions and chance that we would make things worse. 

Last night, as we lay in bed, finishing up work and trying to distract our worries, I started to flip through pictures on my new (old) phone.  My previous phone had sand in it from the beach, and wasn't working properly- so I pulled out an older phone and switched my SIM card over.  It was filled with pictures from last year.  It was just the sign I needed to renew that hope.

"Peter! Look at Hunter's face!"

 

2013

His Vitiligo.

Last summer, his vitiligo really progressed.  His circles around his eyes had spread to his cheeks.  His nose had a large ring around the left nostril.  His chin had a pronounced white spot that had never been there before.  And looking at these pictures, I noticed that his fingertips were white last year as well.

 

This summer, we weren't that severe.  

2014



 

Had the IVIG assisted in repigmentation?  Typically, those who suffer from Vitiligo don't experience much improvement, only patches that continue to grow and discolor the skin.  But check out his eyes this year (picture from today).  But had the IVIG done its job and turned this autoimmune disorder around?  Had it told the skin to stop attacking itself?

 

We are going to meet with Dr. G this Friday to discuss all of the recent happenings (at his request).  We will lay it all out on the table and hope that he will have an answer and guidance for the next step.

 

Tonight, Hunter had a hard time going to sleep (always the case the first night of IVIG).  But doors were not slammed.  Not one "how dare you."  And even when I shut off the light at 10PM without much warning, he crawled in bed and asked me to lay with him.

 

After getting up, and heading to the door (after rocking, snuggling, etc- yes, he was working it), he said to me,

"Mommy! You forgot to kiss me and tell me good night!"

 

Ahhhh. 

 

Anytime, sweet boy. 

 

You got this, little man.