You are your child’s main advocate.

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This post was written by my niece Shauna on her blog.

http://arewethereyetblog.typepad.com/are-we-there-yet/2011/08/living-with-pandasand-not-the-cute-and-fuzzy-kind.html#comments

I am reposting it here because of the message in the post. If you have a child that seems to be sick, do everything you can to find out what is wrong. You are your child’s main advocate. Be a voice that will be heard and don’t give up. You know your child. You know if something is not right.

Shauna was lucky in her search for an answer. She found a doctor who diagnosed her son right away. I wonder how many others are not so lucky.

Read Shauna’s story about what happened with her son. If it rings a bells with even one person, it will be a blessing.

Living with PANDAS…not the cute and fuzzy kind.

It has taken me a while to compose this post.  Not because it
isn’t a topic at the forefront of my mind quite frequently, but more
because I have only in recent weeks began to make sense of it all.  So
bear with me…this is a long one!

May and June were extremely difficult months in our household.  Nate
was not himself to say the least.  I can almost pinpoint the day it
started and it wasn’t pretty.  Suddenly, the mornings were beyond
challenging around here.  Nate wouldn’t get out of bed, and cried
repeatedly about not wanting to go to school or day care.  This was such
a surprise and very new for us.  Nate had loved kindergarten from day
one and never expressed any concern about going all year.  He had always
loved Debbie’s and went to daycare without issue all of his previous
years.

Getting out the door each morning was so difficult.  Nate worried
about everything; the way his pants fit, the length of his shirt,
whether his homework was in his bag, who was going to pick him up, the
toy he was going to bring…it went on and on.  My independent little boy
could no longer manage to get dressed on his own or brush his teeth.  At
day care each morning you could see his anxiety building as he
anticipated saying goodbye to me.  There were a number of mornings over
that period of time when they literally had to pry his fingers off me
one by one as he screamed and cried.  It was awful… tortuous really.
There were many times I drove to work in tears; already spent by 8:00 am
and increasingly worried about my little boy.

The evenings and weekends were also hard.  Everything was a battle.
A lot of his time Nate spent being difficult, defiant and truly
miserable. In turn this made everyone else in our house miserable, as
well.  Listening was an issue and he argued about everything.   He
obsessed about his belongings, needing to know where everything that
mattered to him was at any given time and he melted down if he couldn’t
find something.  He asked the same questions over and over and needed
constant reassurance. The food on his plate had to be just so and he
freaked out if it came to close to certain foods he disliked on the
counter.  He worried about being lost and asked me about dying.  His
little mind was constantly going.  It was tiring to watch, frustrating
to deal with and heartbreaking to say the least.  What a helpless
feeling to watch your child suffer and have no idea how to help them.
We kept hoping it was just a passing phase, but still it continued.

We tried everything to ease his worries and get him back on track.
We made charts and put rewards in place.  We tried consequences and
positive reinforcement.  I read books and articles desperate for new
suggestion and advice.  We tried talking to him repeatedly but he
struggled to explain what was bothering him.  I talked to our daycare
providers and they too were seeing what we were seeing.  They too were
worried.  I spoke to his teacher, twice, who surprisingly had seen
nothing out of the ordinary and was shocked at what I described.  If
anything she said he was flourishing and doing better than ever.  Huh?
Nothing made sense and we were at a total loss and desperate to help
him and our family be at peace again.

The first week of June brought a call from daycare checking on meds
as Nate had a low-grade fever.  And although he seemed perfectly
healthy, this was not the first of its kind that month so that coupled
with the change we had seen in him building over the four weeks prior
prompted me to call the doctor.

I will never forget the moment that occurred as I described what had
been happening.  You know it isn’t good when the doctor starts her
sentence with,

“Now I don’t want you to worry but…there is this thing”.  She
described to me an auto immune disorder associated with Strep Throat.
She explained how with this disorder while the body’s defences are
trying to attack the Streptococcal bacteria causing the sore throat,
there is some degree of mistaken identity and it also attacks some parts
of the brain.  The autoimmune attack in turn can cause a range of
behavioural and emotional problems.  She explained how it was a long
shot but that we would do a strep test to rule it out.

I tried not to panic but I did.  I went home that night and I did
exactly what shouldn’t. I googled it and found out the name of this
disorder….PANDAS… Paediatric Autoimmune Neuropsychiatric Disorder
Associated with Streptococcus.

That night as  I read through the list of symptoms my heart sank.

  • Irritability, temper tantrums, or mood lability- yes
  • separation anxiety- yes
  • age regression (baby talk etc).- yes,
  •  Defensiveness caused from hyperactive senses (such as sensitivity to clothing, noise, light, taste, etc.-yes,
  • Attention deficits and oppositional/defiant behaviours-yes,
  • Obsessive/repetitive/compulsive argumentative behaviours,- yes.
  •  Sudden onset of symptoms-yes.

There were also a number of symptoms he wasn’ t exhibiting but still I was very concerned.

You see with PANDAS once the autoimmune trigger is made it is there to stay.  It varies in what looks like from kid to kidHere is a more clinical description from the Behavioural Neurotherapy Clinic,
“Children with PANDAS seem to have dramatic ups and downs in their
behavior. They may have a very sudden onset or worsening of their
symptoms, followed by a slow, gradual improvement. If they get another
strep infection, their symptoms suddenly worsen again. The increased
symptom severity usually persists for at least several weeks, but may
last for several months or longer. Symptoms may gradually fade away, and
the children often enjoy a few weeks or several months without
problems. When they have another strep throat infection the associated
behaviours return just as suddenly and dramatically as they did
previously.”

Although, I had taken Nate to the doctor in the hopes for some
answers, I had never expected this.  I had expected something more
like,  “Let’s make note of this and keep our eye on it.”  Or “ It’s
probably just a phase”.  That kind of thing.

Instead I was beside myself with worry as we awaited the results.
The 24-hour test result came back negative.  We were encouraged.  The
48-hour test result came back negative.  We were beyond relieved.  And
although his behavior continued we still remained hopeful that it was
just a phase and a reaction to the busy spring schedule we had going
on.  However, a week later his blood work came back showing he had
recently had a strep infection.  I thought back to the day I had stayed
home with him at the beginning of May, and although it was a short lived
illness, it was most likely the trigger and coincided exactly with the
onset of his emotional/behavioral issues.

I was terrified of the unknown. It was a dark and difficult time for
all of us and now with this unexpected diagnosis, I was in shock.  All I
have ever wanted for my children is for them to be happy and healthy.
All I have ever wanted for my family is to be surrounded by love and be
at peace.  Yet it felt like we were in a deep dark hole and we were
kicking and clawing our way back towards the light.

As the news sank in and I began to wrap my head around it and become more informed (I found this site
particularly helpful).With time, I put it all in perspective and of
course came to realize that there are far worse things.  And most
certainly we would rather have an answer than live in a world of unknown
muddling our way through.

Nate’s doctor has been wonderful.  She explained the PANDAS
diagnosis; she put him on antibiotics and made a referral.  Within days
the antibiotics made a world of difference and I saw glimpses of my
little boy again.  As the days turned to weeks, Nate’s anxiety slipped
away a little each day and he was back to his old self again.  PANDAS
has only began to be recognized in the medical profession over the past
ten years or so and they are only beginning to realize how many children
may be affected.  We are very lucky our doctor was on the ball enough
to make the connection.

So what does this all mean?

Well, from here on out we will need to monitor Nate’s health closely
and if we see symptoms emerging take him in a.s.a.p. to be tested for
Strep in an attempt to head off future exacerbations early on.

Also, because the trigger has now been made we will need to keep a
close eye out in higher stress situations.  Although, Nate is doing so
well now and his anxiety is all but gone, July really was about picking
up the pieces. He is in many ways back to his old self but with PANDAS
although it does go into remission when the strep infection is treated
there can still be long term and far reaching effects.

Nate continues to be very focused on his possessions and he has
difficulty dealing with feelings of frustration.  He can be sensitive to
sound, along with other stimulus and he can be highly affected by
sugar, and medications. Caffeine is off limits.  There are still times
when it feels like he is “spinning”; this is when he can’t settle or
listen and is suddenly so irrational. Thankfully these times are now
farther and fewer between. “Traditional” methods of time outs and
typical consequences are not highly effective with Nate. With PANDAS
kids there are complex things going on in their brain that I am only
beginning to understand.  We continue to seek the strategies that best
help Nate when he is having a difficult time.

Of course there are times that dealing with him can be very
frustrating. However, what seems to work best is to help him settle.  To
hold him.  To calm him and look him in the eye. What seems most
effective is not to react but instead to remain calm, speak gently and
make him feel safe and secure.  Taking an authoritative approach with
Nate isn’t successful and only riles him up further.  In fact, I find
this to be the case with most kids.  And although this is challenging at
times, nurturing and protecting our children is a parent’s job, even
when we are merely protecting them from themselves.  During these past
trying months, I have always kept these words at the back of my mind,
almost like a childrearing mantra of sorts… “parent in love not anger”.
Parenting truly is the hardest job on earth.  How can it not be when we
are invested in it with every bit of our heart and soul?

For me, my biggest concerns lie in the unknown.  Because PANDAS is
only newly in the research, there are still so many questions.  What are
the long-term effects on the brain?  Will this ever go away?  What
happens when he enters puberty or adulthood? What is all this talk about
the “blood brain barrier” really mean?  These will be a few of my many
questions when we finally see an “expert” in the months ahead.

But until then we wait. We pray that we are healthy and that Strep
stays away. We do not know what the road ahead brings.  The PANDAS
Network talks about enjoying each of the “delicious moments” when your
child is at peace and their core personality intact. After the time we
have been through in recent months, I am sure to enjoy each and every
delicious moment we are experiencing right now and we count our
blessings that our happy little boy is much more himself again.

To all the parents out there; from this experience I have learned a
valuable lesson that I pass along to you.  If your child doesn’t seem
him or herself, and you have tried everything you know how to get them
back on track…trust your gut and dig deeper.  We are our children’s only
advocate and they our greatest treasure.

2 thoughts on “You are your child’s main advocate.

  1. Pingback: ~ 10 years ~ « ~♥~ Faith's Updates ~♥~

  2. Pingback: Should I call the doctor?

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