PANDAS...Great strides made in research.

 

 

Recently, a scientist whom has been researching Pandas was able to show empirical evidence that Pandas does indeed exist.

This is second hand information, it might contain some inaccuracies, however, it transcends the main important idea.
 

He cross bred white mice and created a Hybrid that have autoimmune deficits.

 

He then injected them with T cells derived from Panda's serum that is thought to be the culprit behind this disorder. The mice all started to show Pandas symptoms. They went from calm to a hyperactive state, frenetic, and aggressive, also doing the same motoric movements over and over again.

 

He then treated them with IG antibodies. (The same treatment that Everett received last June).  They all returned back to normal.

 

He then did brain biopsies on the mice.  He found that the T cells had indeed made their way across the Brain Blood Barrier and into the Basal Ganglia, causing an inflammatory response that is not able to be viewed by an MRI, or detected by a blood test.  The controversy over Pandas is that nobody could prove that the BBB could be breeched. He has now proven this.

 

He did timeline linear autopsies to see how long these antibodies would remain in the brain before leaving. (full recovery).  Timeline showed several months to leave the brain if not re-infected. The conversion to humans is up to 6 years.

 

Because he was able to replicate this by injecting  Pandas serum, it  showed that once the Pandas disorder is tripped off, all future T cells mfg by the immune system have what is called a "working memory". Meaning, if a child has a cold, stomach flu, loses a tooth, stress, anything that causes an autoimmune response in any way and T cells are mfg, they will go after the basil ganglia as well as the foreign enemy, especially if the BBB has not had adequate time to heal and close. Thus, we see the remitting/relapsing pattern in children.

 

The good news: All research studies reveal that  All children who have been treated young, like Everett, recover fully and lead healthy lives. It may take 1 to 2 years for the effects of IVIG to do their things, but the prognosis is promising!!! 

 

His work is in the process of being published by the scientific journals and undergo peer review.

 

Translation: We are not all crazy.

 

 

 

 

 

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Pandas: Our life since IVIG.

PANDAS.  Our life since IVIG...

Mid June of this year, our son had his first IVIG treatment.  If you have followed this forum, you would have read just how beautiful he did.  His motoric movements non-existent within in days of treatment.  His temperament,  unstable, volatile , and hyper... overnight, changed back to the child I knew.  Gone were his tantrums, angry outbursts, and  unreasonable attitudes.  His need to use an entire roll of toilet paper in one sitting went away.  I did not hear him speak of fears that I, his mom, was going to be hurt because I stood on a chair, or rode a bike, etc.    I saw a child grow up instantly.  The milestones we all wait for with typical children seemed to appear overnight.  I saw a child who was acting like a 7 year old, and not a 3 year old from an emotional standpoint. He was now calm.  Self awareness and an active awareness of social norms  started to show itself.   My child, my sweetheart, was smiling again.  He was meeting the potentials that I knew were deep inside of him.

This lasted for 12 weeks.

In school, Everett was exposed to Strep and the Stomach Flu.

Three days later, on a dime, my child reverted back. Another episode. We tested for strep and it was negative.  He ran a slight fever, but that was all.  It appeared that he was reacting to exposure.  The next three weeks were horrible.  All past symptoms reappeared along with a level of anger/oppositional behavior that I had not seen before. School was almost impossible. What got him through were the group of teachers, school psychologist, and principal who came to together in support of my child.  They were amazing. 

Our pediatrician, who diagnosed him with Pandas, agreed that perhaps it was time to test further.  Make sure that we did not miss anything. So in one day, my child underwent an EEG, MRI, and a Lumbar Puncture along with blood work.

He was discharged by the neurologist who did not believe in Pandas, and said that his blood work did not indicate any autoimmune issues, (Pandas is considered to be an autoimmune disorder).  He said, "If your son had an autoimmune disorder, we would have found it. While we have weeks to wait for the Lumbar Puncture results I do not believe that we will find anything." 

4 weeks later, the results came in.  My son has an autoimmune disorder.  Two well defined O Bands in his spinal fluid indicate that. 

In my humble opinion, it was this autoimmune disorder that created the perfect circumstance for Pandas to set in and take hold.

We now have insurance coverage for future IVIG treatments, and in fact, it looks like our Insurance carrier is  going to reimburse us for the one he had which we incurred almost 9K out of pocket expenses.

I am happy about the money, but I am more thrilled that we were finally able to find something to support his diagnosis.  Pandas is such a nebulous diagnosis.  It has yet to be truly embraced or fully understood by the medical community.  Parents who have children struggling with this disorder are often met by misunderstood, unsupported, smug disdain when turning to others for help. Parents  experience this from doctors, teachers, friends and family members.  To put it bluntly, it is awful. We have been blessed.  Our Pediatrician was the first to connect the dots.  We are lucky to live 20 minutes away from one of the few specialists, Dr. K.  My child's school was wise enough to know that this child, was "suddenly not himself".  I applaud them for their open hearts and minds.

This was all good, but our battle is not over just yet.

This was a tough episode. An unexpected one.  However it happened.  We were able to move him through it with antibiotics, but I am concerned.  It took only exposure to trip it off. 

Studies show that if Pandas is caught early, and an IVIG is done within the first year of first episode, 80% of children recover fully from this disorder with no future episodes. My son's was done about 1 1/2 years after his  first episode with 3 concurrent episodes before IVIG.  Another one is in his future probably.  I am grateful that we will have coverage. 

I share our journey to help others.  If you suspect Pandas, I would recommend following through with your instincts immediately.  If your child ever contracts Strep, don't assume that the antibiotics cleared it up.  Have your child retested to make sure.  By doing so, you can decrease the likelihood of Pandas ever happening.

qannie

PANDAS/IVIG...Did it work?

     Pandas/IVIG....

     11 weeks ago, my son, Everett, received an IVIG treatment for Pandas.  Since then, he has been doing amazing.  He is a different child.  He has returned back to a child whom is calm and reasonable.  He is acting age appropriate.  He has dropped his baby like tendencies, like baby talk, and  wanting to eat with his hands.  I am not seeing the ocd repetitive behaviors like spinning in circles, running up the same three steps over and over again.  He is no longer exhibiting what I would describe as "herky jerky" movements.  He is no longer screaming out like a bird over and over again.  I am not seeing hours and hours of oppositional/argumentative behaviors.  His short term memory is starting to return.  He truly is a different child.

     I often find myself just staring at him at times when he is sitting calmly at the kitchen table. Or when I make a simple request like, go get dressed and he does it.  He does it.  No more ridiculous meltdowns that don't make any sense.  It is almost too good to be true. 

    Everett will be on antibiotics for the next two years most likely.  He is on a regime of magnesium, vitamin C/daily vitamin, and probiotics.  The abx acts as an anti-inflammatory as well as to help ward off illness.  I am told it is not strong enough to hold off strep, and while the IVIG is doing it's thing, and his immune system is maturing, we will be very vigilant about catching a strep infection as early as possible.  In December, he will have his tonsils removed. 

     We will all keep our fingers crossed....but so far....so GOOD!

     qannie

My Child Brought a Bullet to School.......Deviance? or Innocence?

    SPD'S & BEHAVIORAL PROBLEMS...

    I have a message to share.  But before I share it, I have a question to ask. " How many of you would like to be rendered inept amongst a roomful of your peers?"  I want you to reflect on this thought as you continue to read...

     Last year, my 7yr. old, about mid-way through the school year brought a bullet to school.  The call came from the principal.  The first words out of his mouth were, "I am not going to make a big deal about this".  When I found my words, I quickly explained that we had been to a Revolutionary War Parade during the summer and my son found it on the ground and must have stuck it in his pocket. His reply was, "I figured there was a reasonable explanation for this".   We discussed the incident for a couple more seconds,  decided to just throw the bullet in the garbage, and just leave it at that.

     I was very fortunate that my child's principal was wise enough to think out of the current box.  Not jump to conclusions.  In order for him to remain so reasonable about the situation at hand, he had to have wondered if there were other, more innocent things at play behind this incident.

     So, "Why did he do that?"

     There is an age old saying, "Don't judge a book by it's cover".  Another favorite one warns, "Don't let appearances deceive you".

     That bullet... "Did it represent defiance?" "Violent tendencies?"  "A troubled household?" "Was he just plain bad?"  The answer, "none of the above".

     That bullet represented a child whom was struggling to learn how to read.  It represented social, interpersonal, and academic desperation.  During these times where the bar for academic excellence is being pushed up a notch, for a Type A child, imagine being in a room surrounded by your peers and feeling like your the only one who can't read. Many of whom are reading chapter books, and you are barely getting through a Dr. Seuss book.   Imagine that while your teachers are aware of some of your struggles,  you are bright enough to  come up with strategies to fool even them.  Ways to cover up just how big the problem is for you.  Imagine how heavy a load that is to carry on a set of 7yr. old shoulders.

     "Imagine being  rendered inept by a roomful of your peers"

     So what does a bright, resourceful 7yr. old do in a situation like this?  When he is failing miserably to keep up with his peers academically?  Why, he decides to bring a bullet to school!    What better way to awe/impress your boyhood peers then to show up with a bright and shiny object such as that. Brilliant really, great way to deflect.  Imagine the "oohs & ahhs" that would achieve!!! It was the simple act of a little boy who was trying in his own way to fit in. 

      It could very easily have been construed differently.  Especially in today's times.... Children are under intense scrutiny, socially & academically.  Imagine how that would have resonated with a little boy who was just trying to impress his friends.

     My message is not about teaching your child how to read, it is about getting to know your child in a way that allows you to meet them where he/she is.

     If you have a child whom is displaying counter productive behaviors that are getting in the way of their social, emotional, or academic success, I advise that you look a little deeper.  Fight for that child.  Get to know that child.  When a child is struggling, acting out, or  not responding to "traditional parenting" methods, I quote, Harold Glaser, "It is very rare that it is the product of Pathology".  Meaning, it is highly unlikely that your child's behavior is the result of an unlucky roll of the DNA dice that rendered your child inherently "bad".

     It is more likely that your child is hurting or struggling in some way.  Dig.  Read a book.  Talk to professionals.  If what they are saying to you does not ring as "truth", talk to somebody else. If traditional parenting is not working or even making things worse, then abandon those ideals and find what does work.  Intense kids, kids whom are struggling in some way often need you to step outside that box.   Do the work during these formative years.  It is so important.

     In closing, I do have one book recommendation, it is called, "Transforming the Difficult Child, The Nurtured Heart Approach", by Harold Glaser  

     Qannie

    

SPD's & High-strung children....The Ultimate Summer Meltdown

     Sensory Processing Disorder,  High-strung children...........and Summer

     Summer.  Sunny mornings, sleeping in a little late, no lunches to pack, no mad dashes out the door to catch the bus...Ice cream, swimming pools, fireworks, yeah...paints a pretty picture doesn't it?

     The school bell rings for the last time, officially commencing the end of my two little darlings 1st grade year.  We are all excited.  Even I was.  After a very busy, and challenging academic year, I was proud of my boys.  High-strung dispositions & Sensory Issues in tow, my guys did about as well, even better, then I could have possibly hoped for. 

     Without the academic challenges and tight behavior boundaries...with Summer... it could only get better.

     WRONG

     To put it bluntly, ALL HELL BROKE LOOSE.

     They awakened and were almost immediately out of control.  The mornings started with running, jumping, screaming, fighting, back talking, bad table manners, stuff thrown carelessly all over the house.  They were bored. They wanted ice cream or Oreo cookies for breakfast.  When I said no, the meltdowns were ridiculous.  Matchbox cars were flying thru the air, mattress were turned into jumpies, every time I looked out the window, one of them was in the street. The word, "MOMMY",  was uttered about every 5 minutes.  The word NO became the official language of the house.

     We were officially out of control. And I could not seem to get them back on track.   I was stunned. How did this happen?  What happened to all my hard work?  What happened to all of our behavior accomplishments?  Was it a dream?  A fluke?  OMG!!!  It was a fluke....a random series of accidental  positive behavior changes that happened to last for about a year or so.  And the run was over. 

     Translation : I SUCKED.  Everything that I thought I knew about how to manage Sensory/High-strung children was an illusion!  I was a failure!   I knew nothing...and we were doomed.  I promptly opened up a bottle of wine and quit writing my blog.  I was a fake.  It was over. 

     Two weeks later...Howard Glasser, " The Nurtured Heart Approach".  Somewhere in the back of my memory I remembered one of you wonderful readers recommended him  to me.  I went to the library, rented his audio, and watched it almost straight thru. 

     Three hours later,  with much learned.....I also remembered how much I had forgotten.  How I myself had fallen and unraveled into old parenting behaviors and ruts.  I had forgotten about  negative attention.  I forgot how my kids natural temperament's  can thrive and run-amuck with too much negative attention.  How it actually becomes an energy source for them to fuel more negative behavior.  I forgot that Sensory/High-strung kids have trouble with "Starts & Stops".  Even with good "starts".....even the start of Summer......

     BINGO.........

     I had the answer.  What had happened?  Summer is what happened...or at least the "start" of Summer.  My children's immature central nervous systems just did not have to goods yet  to handle the excitement of transitioning into Summer.  Loving the idea of starting Summer did not necessarily mean that they could yet handle the emotional charge that came with the idea of endless days of fun fun fun, and lacking the  very much needed structure.   So, they unraveled.  I unraveled.

     So, with thanks to Howard Glasser, I was reminded about some of the stuff that I already knew, and implemented some priceless techniques that were new to me.  I took a deep breath, and started again. 

     Remarkably, within two days, I was able to revert my kids back to their new norm.  They calmed down, started listening again, backed off of a lot of negative behavior, and looked happier again.  I was happier again.  Summer was happier.

     Hence, I have started writing my blog again....I don't suck.

     What I am really excited about is sharing all the tips and insights that I learned from Howard Glasser.  I look forward to sharing firsthand how I have used his techniques, what that actually looks like, and reporting the success.

     So I will end with this thought.  Be careful about the unseen booby-traps that summer can bring...and if you find yourself experiencing some unraveling with your kids...know that it is normal.  All is not lost.  Just pull up your bootstraps and go back to the basics....

     Have a nice Summer,

     Qannie
    

Sensory Processing Disorders...Our children, what will become of them and all their glitches....

     Worry.  A state of mind that I have come to be well acquainted with.  When you are blessed with children with special needs, you can't help but worry.  What will become of them?  How will they do in life?  Will they overcome these obstacles?  Will they be able to do well in school?  Will they socially mature and make friends? Or will they be the kid who don't get invited to the Birthday party, the one last picked on the team?  Will school lunch be a hurtful, dreaded experience because everybody is making fun of them and nobody will sit next to them? Can I do enough for them so that they will be able to find their place in the world, a place that leads to self contentment and inner happiness? Or will it be a life long challenge of having to watch my children  struggle emotionally, socially, academically?  Will  I, as their parent have to watch and  simultaneously feel my heart break for them?  These are some of the things that  cross my mind.  As positive as I am by nature, when the day has come to an end, and the lights are off, I worry.

     Yesterday at the park,  as I watched my two free spirited, worry free, children play amongst their peers, my mind strayed once again to that all consuming question, "What will become of them?". 

     As I once again, faced these concerns for their futures, I decided to look in the present for some answers.

     My friend Carm.  She is classic OCD.  When you talk to her, she is consistently blinking her eyes, clearing her throat, hyperventilating, and talking way to fast.  She is definitely glitchy.  Carm, is 40 years old.  She finished college with a masters in Social Work, started her own Nail Salon, which evolved into a wellness center, and sold it for quite a impressive amount of cash...Everybody loves Carm.  She is smart, funny, intuitive, and she draws people to her.  Everybody is aware of her glitches...but they, as well as  myself, just don't care.  WE like Carm.  Carm is successful, happy, and living her dreams.  Really nothing to worry about over Carm.

     My friend Donna.  Donna is definitely on the ADHD side of the fence. She talks very fast, changes topic rapidly, often makes leaps in the conversation that appear to have nothing at all to what you are talking about.  She is a meticulous note taker...she must...or she will forget. I just love Donna.  She is a successful sales person who is smart, a great people read, hard working, a positive person to be around,  and somebody whom I would not second guess to quickly.  Donna has glitches.  It is apparent after you get to know her...but who cares, did not stop me from loving our conversations and wanting to be around her.  And apparently her glitches don't seem to get in the way of her meeting her fullest potential.  Really nothing to worry about Donna.

     Sara.  Sara too can be a little ADD.  Her short term memory is pretty awful.  She often tells me the same story over and over again.  Insists that the conversation that we had "never happened".    Sara is one of the smartest people I know.  It is often her that I go to if I am stumped.  Sara is one of the most successful people in her industry.  Her common sense is second to none.  Her ability to be a chameleon and mold herself into just about any situation is admirable.  She has a tremendous ability to see the "big picture", and it is this particular quality that has led to a life of success professionally, and inter personally.  Sara is happy.  People like Sara.  Sara likes Sara...as well as she should, she is a good person, and an asset to have in one's life.  Really nothing to worry over Sara.
    
     Which leads me to myself.  As a child I was an absolute mess.  I came into this world, colicky, high-strung, a little ADD and way to sensitive.  I have some battle wounds from childhood that I would rather not remember.  As an adult, I can sometimes be a little too intense, still a little  ADD, and my short term memory is rather embarrassing.  Yet, today, I can say that  I am happy.  I have friends, a wonderful family, and I have enjoyed great success in my career. I am proud of who I am.  I accept my flaws as well as my strengths.  Like all of the people that I admire most in this world, despite all of our glitches, I have found my spot in this world and I am content.  At the end of the day, I do not worry about myself....

     With great relief, as I let my mind wonder through this empirical  evidence, with the realization that perhaps most of us have come into this world a little glitchy, imperfect, and yet, through the grace of human spirit, loving parents, and perhaps some magic, we are all okay.  With great relief , I embraced the knowledge that  my children,  too,  would be okay. 

     I think everybody has a story.  It is what makes us human.  Where we draw strength from, glean wisdom, it's what  help's us to understand our children...

      So that is my new found wisdom for the day.  I worry too much.  I will always worry, that just comes with the territory of loving children.  However, the next time I feel myself overcome with the thought, "What will become of their future?", I will look to present to find comfort.

     qannie47


      

Sensory Processing Disorder: Slowing down Hyperactive Behavior....

     Sensory Processing Disorder & Hyperactive behavior....I have found that children with Sensory Issues can also exhibit traits that mimic Hyperactive behavior.  Whether they are sensory seeking, or sensory sensitive, these kids can have a somewhat "backward" relationship with stimuli, and it's effect on them.

     When my children both started to look like two nuclear energy balls...figuring out how to slow them down of course became a focus.

      Using good, basic common sense, it seemed to me that if my little guys had a lot of energy, I should encourage activities that would require "high energy output" in order to slow them down, tire them out.   Activities that involved lots of running, jumping, big cardiac workouts...I took my kids to parks, long bike rides, jumpy places.....for hours I would watch them put out immense amounts of energy.  I then would wait for the end of the day CRASH...Waited for the "Mommy..I'm sooo tired".....Surprise...it very seldom came, if ever.

     So I thought, I must add more activity to their day! That of course involved longer bike rides, extended park time for them to run around and scream their little heads off....Nothing...again, very seldom did these kids come home energy depleted....

     Then the irony hit me,  "IT SEEMED THAT THE MORE ENERGY MY KIDS PUT OUT, THE MORE ENERGY THEY GOT"  Like little magnetic energy balls, it became more apparent that they seemed to feed off heightened levels of stimuli.  By the end of a high energy day, my children were not tired.  They were crabby and more emotional volatile, a little crazy,  but not tired.   Hence, what wore most kids out by the end of the day seemed to have the opposite effect on mine.

     HMM......

     Sensory Kids: An inability to take in external stimuli and organize it effectively.....

     One day, we decided to go to the beach.  I watched my kids swim against Lake Michigan currents, build sand castles, which required several trips back and forth carrying heavy buckets filled with water and wet sand. I watched them move around an old abandoned tire around the beach for hours.  They manipulated this tire for hours...slow, heavy, methodic work.  I watched them run the beach...running on sand I noticed caused "resistance".  They were unable to reach peak speed.  Their sprints in the sand were slower, required a  more contolled  effort.  It was not an especially hot day.  Actually it was early fall and quite cool.  So at the end of the day, when we promptly loaded our two little darlings into the back of the car for the ride home, I was quite amazed to find that they zonked out in five minutes. THEY FELL ASLEEP. THEY NEVER FELL ASLEEP IN THE CAR!!

     Huh?  What was different about this day?  I had in fact seen them put out much higher levels of energy and it had not fazed them a bit.  In fact when they were five, we as a family did a 15 mile bike ride in Michigan..they did not fall asleep that day.

     It was this day that I gleaned my first insights into how you go about slowing down a sensory kid. 

     The key does not lye in how "much" energy is put out.  The key seemed to lye in "what kind" of energy was  being put out:  Slow, Deep, Controlled.    

     From that point on, when I wanted to tire my kids out, or slow them down. I tried something different.  I didn't make them run around, or put them on their bikes for hours, or bring them to jumpie gyms...Nope...I did these kinds of things instead....

     I  ask them to move my furniture around the house several times until I find the "perfect"spot.    I have them move boxes filled with books from one room to the next in an effort to "help" mommy.  I bring them to beaches and swimming pools.  I look for sled parks and challenge them to races "up" the hill (winter or summer).  I enrolled them in gymnastics, the rope climbing, parallel bars, rings...When I needed a hole dug, (weather I really needed one or not), I had them dig it.  Raking leaves....

     Slow, Deep, Controlled.  I believe that several important things happen when a High strung, sensory kid engages in these kinds of movements.  First, the sensory input is what their brains crave and need.  The deep, controlled movements give sensational sensory input and the brains says's "aaah".  Second, The movements are slow, again, more controlled, and it teaches the brain "how" to "slow down", actually allows the brain to feel what it's like to go at a slower pace.  Third, Ever exercise?  Try riding a bike.  It is much easier and less taxing on the body if you are peddling fast on a light gear.  Switch it to a higher, harder gear.  I guarantee you, it will slow you down, you will feel the resistance, it will be much harder, and you will feel like you had a much harder work out in the end and you will be tired.  Slow down your child's pace with added resistance: you will get a tired child who slows down.

     The furniture? A lot of deep slow resistance that also slows down their pace.  The boxes? Same thing.  The swimming pool and beach? While it may appear that your kids are moving fast, but not if you compare it to running at a park.  The water provides resistance, gives them great sensory input, and indeed it is a slower deeper energy output.  Running up hills?   Much the same...Get it? 

     So.  When you are trying to slow your children down, remember these tips....Slow, Deep, Controlled.  It worked so well for mine that I am convinced it will work for yours.  Give it a try. 

     Email me and let me know.

     Qannie