The Scariest and Most Dangerous PANDAS Symptom

As most of us with a child in our lives who has PANDAS or PANS, we have learned that each bout, or exacerbation, can bring different behaviors or symptoms.  My daughter would always experience anxiety, however, it would manifest in varies ways each time.  Like a shapeshifter, PANDAS would change her behavior and thoughts, but I would still be able to see her true self deep inside.  After the first year we became familiar with how these changes would take place and plan ahead for the ones to come.

We are four years into our PANDAS fight and my daughter is now 12 years old.  Over the last year her symptoms have improved, narrowing down to a mild level of OCD to where it was not interfering with her everyday life, and her anti-strep titers were declining.  We were lucky enough to have several months where things were pretty steady, then she tested positive for strep throat.  I watched her behavior closely, expecting it to change and the increase in anxiety to hit, only wondering what form it would morph into this time.

She did begin to change, only this time there was in increase in her OCD without the added anxieties.  There was moodiness, but lets face it, we are talking about a hormonal adolescent in middle school...who wouldn't be moody?  Nothing seemed abrupt - how PANDAS is known to take over.  What I did not think to do was consider the various other neuropsychiatric symptoms known to be associated with this disorder.  Below is the list from the National Institute of Mental Health...  Do you see the scariest and most dangerous one on the list?  This was the one I missed.  I was looking (and waiting) for her "normal" PANDAS to show up.  There is nothing normal or fair about PANDAS.  Please, please, please don't make my mistake.

With respect for my daughter I promised to not share the details of her situation, and I hope some day she will find the courage to share her story with the world, however, I must share the severity of this disorder.  No child should lose their life to suicide, and no child should lose their life to PANDAS.  We must spread awareness.  Please share this information, especially with those that you know who love an adolescent or teen with PANDAS.  They are more likely to have the means if they have the thoughts.  We all know these thoughts are not in their control, they are neuropsychiatric, so we have to work together to help them survive through it.

a. Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)

b. Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look"

c. Motoric hyperactivity, abnormal movements, and a sense of restlessness

d. Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations

e. Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas

f. Increased urinary frequency and a new onset of bed-wetting

g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide.

h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms)

Fur Baby Therapy

We decided to get our yorkie Willow as a therapy dog for our
PANDAS daughter when she was struggling with reading.
Months later my husband and I realized how much therapy
we each ended up receiving from her as well .... comfort, a
reason to make us exercise together, and tons of comic relief.
Here is a link to a great article I found about the first therapy
dog (also a yorkie!) ....  Therapy Dogs Change Lives.

We recently rescued another fur baby...Piper!  This way I won't
 get as jealous when Willow wants to snuggle with someone else. :)

Another Reason to Love Sam Smith

I was listening to the radio when they casually mentioned before playing one of Sam Smith's songs that he has Obsessive Compulsive Disorder.  Naturally that caught my attention being the parent of a child who has battled OCD along with PANDAS for years now.  I did a quick web search and sure enough the fact was confirmed on this video by Sam himself along with some other forms of anxiety.

So why did I find this exceptional when there are plenty of people out there with this problem?  Prior to knowing this I was already absorbed by the reality presented in Sam's art through the honesty of his lyrics and the emotion inflicted in his voice.  When I listen to music I want to *feel* something and his music far exceeds this expectation.

One song in particular that I wanted to highlight as a PANDAS parent was In The Lonely Hour.  In this I hear the voice of our children who desperately need us there for them as they endure these horrid moments PANDAS forces into their lives.  Anyone who has dealt with any level of depression knows that it is possible to feel lonely in the most crowded of rooms.  Our children sit in overfilled classrooms with rarely one soul that understands what they are going through.  I think of all the hours my daughter has cried and as her mother I was lost in how to comfort her...what to say or do.  Now I know what I did or said will not be what my daughter remembers, it will be that I was there with her in those lonely hours.  I respect Sam Smith's bravery in opening his heart to us all and thank him for giving our children a humanized celebrity whom offers absolute empathy.

Here is a live clip of In The Lonely Hour...

Awareness Day!

Be sure to spread awareness this October!  Check out pandasnetwork.org for more info.

My daughter and I will be participating in the Ohio Awareness Walk on the 25th.  Here is the link if you would like to join our team or make a donation... Team Gibbs.

PANDAS at its Worst

I keep this picture, as sad as it is, to remind me of how
far my daughter has come in her battle with PANDAS.
She was like this everyday for over a year,
crying for no reason and fighting me as I tried to help her.
A terrible way to spend even a moment of your childhood.

Sensory Sympathies and Fibromyalgia

Typically I share about my daughter's health issues, but today I thought I would let everyone in on what has been going on with me lately.  It started back in January of this year when I had a vicious attack of vertigo that lasted for about three days.  After that the vertigo was still there and was provoked every time I moved my head, but was at least calm while I was still.  This led to time spent with an ENT, Neurologist, 8 weeks of physical therapy, and a MRI...all of which determined I had something known as Vestibular Neuritis.  Basically this is inflammation of the nerve that sends messages to the brain from the balance organs in the inner ear.  What puzzled the doctors was why the nerve was not healing, allowing the brain to adjust to the new level of balance and let me move on with the rest of my life.  Normally this happens within a couple of months at the longest.  At this point I was a good six months in.

About two months ago I was visiting my family doctor, who had been keeping tabs on all of this and trying different medications in order to get me some relief.  She happened to catch me on an extra grumbly day.  I vented everything that had been bothering me, which ended up being much more than the vertigo once I laid it all out.  Some of these gripes included:
          *Achy flu type feeling throughout my body*  I would also have a burning sensation in my muscles when doing anything physical....like in my thighs from walking up the stairs.  I felt as if I had done 100 squats where as in reality I had only climbed 10 steps.
          *Tired all the time and easily exhausted*  Even by the most 'normal' of activities, like running the sweeper or going to the grocery.
          *Having trouble concentrating*  It was like I knew people were talking to me...I could see their lips moving and could hear that words were coming out.  I was even engaging them with head nods and eye contact but was having trouble processing what they were saying well enough to make a remotely intelligent reply.  Many times I would need to ask clarifying questions about things that should have been obvious.  This has been one of the most challenging things for me at work when speaking with colleagues and customers.  I feel like I must look like a total idiot and fear loosing the respect from those I have worked so hard to earn it from.

Once my doctor took all this in she said, "Well, that sounds like Fibromyalgia.  Does anyone else in your family have a history with this that you are aware of?"  Actually yes doc.  Both my father and sister are dealing with Fibromyalgia.  How could I have not made the connection sooner?  One thing I was not aware of is the interference this creates with the nerves - resulting in the aches and pains, but also could very well be the problem with my vestibular nerve.  A few weeks on a fibro med and my vertigo has quieted tremendously.

One thing I have encountered with this that brings me back to PANDAS is the extra sensitivity to touch.  This is something my daughter has struggled with for years.  So many times she told me her jeans 'hurt' and as compassionate as I was I never could really understand.  It was a couple of weekends ago when I was laying on the bed watching TV and just could not get comfortable.  The seam on my jeans was pushing up against my knee and I honestly said, "This *hurts*!!"  I am pleased to say I have found something  good thing in all of this...genuine empathy.

I still need to see a specialist for an official diagnosis, but at least with this medication I feel like I have some of my life back...so hopefully you will be seeing more posts from me!

PANDAS Eyes

One thing that has been very reliable in detecting an oncoming PANDAS flare up in my daughter is simply the look in her eyes.  I tried to capture this 'look' in a photograph since I have been looking for a way to best describe this to her pediatrician and other parents.  It was when I was cropping the image that I realized just how similar her "PANDAS" eyes are to those of a real panda bear.  Droopy, dark circles, and abnormal pupils.  Both sets of eyes make me want to give them each a big Mama Bear hug.

Panda image obtained from fellow blogger....http://chengxiao123456.blog.com/page/4/

Video Now Available

Sorry about the technical error with Dora's video...we are both new at this.  : )

The Sound of Worries

In a previous post I shared that my PANDAS daughter was starting a new hobby and creating videos about her life, etc.  Here I have posted a video of her sharing a song she wrote about her 'worries'.  Along with 46% of fellow PANDAS children she suffers from severe separation anxiety (http://pandasnetwork.org/research/parent-research/fact-sheet/) and has expressed in this song how she feels when she tries to call me and I cannot answer my phone.

Supporter or Enabler?

As parents one thing we are still learning about PANDAS is how much control to give our daughter over her obsessions and compulsions.  We have gone back and forth on this and quickly realized there is a delicate line between being supportive and enabling.

From the beginning our daughter has obsessed with perfecting her routines, most specifically around getting ready in the morning.  She will agonize over making potential changes no matter how small.  Everything will be fine tuned and seem to be working well for awhile, but then the obsession creeps back in causing her to doubt it all.

Over the last several weeks she has been wanting to create videos of herself, somewhat like a diary, but has had a hard time coming up with ideas of what to talk about.  As a way of brainstorming she went to YouTube to see what videos other girls her age had created.  She stumbled across a series of videos where girls explain their morning routines.  This of course greatly inspired her to once again tweak her own, but before making any decisions she wanted to watch more (and more, and more) videos.

I have been torn over whether or not to allow her to continue this 'research'.  On one hand I think it is good that she sees that everyone's routines are different, and the girls do tend to share it cannot always be the same everyday and stress flexibility in them.  However, I am also worried about the obvious...that the obsessive part of her mind will not hear any of those points at all; focusing solely on her own perfection.

Any thoughts....?

One Good Friend

I have always told my daughter that all she needs is one good friend to survive school with minimal damage.  Making new friends in the fifth grade is not effortless for most kids, but for a PANDAS child it can be even more challenging.  When she was in elementary school Dora made 'surface' friends, as I like to think of them, who she could play with contentedly without either really needing to know much about the other.  As she gets older and her roots of individuality stretch deeper, her friendships too are becoming more personal.

There were a few of the surface friends that avoided her after encountering the PANDAS layer.  Either they did not care to understand her situation or maybe they even feared it.  One thing we did learn along the way was to not let a friend learn about PANDAS during an episode...it is much better to discuss it before that happens.  For example, Dora had a friend spend the night for the first time last year.  Of course she was super excited, but I was afraid of how the changes in her routine might cause her to react.  We discussed how she would handle any anxiety that would arise and since this was a friend that she had known for awhile, I was feeling adequately prepared.

She made it through skipping the nighttime rituals without concern; the next morning however was a different story.  Her normal routine was fully derailed which was too much for her to manage.  She ended up with a full blown tantrum that lasted close to an hour while her friend watched in uncomfortable silence.  It was so hard for me to know what to do....I felt deeply for both of them.  Slowly this girl became less and less of a friend to the point where now the two of them barely speak at all.

It took a few long months but thankfully Dora made a new friend this school year who has stayed over several times now.  The first time she was at our house we discussed PANDAS and how it can cause Dora to behave differently.  It was not until last weekend that she witnessed this first hand.  The two girls were using some paint in Dora's room to work on a project together and a few drops ended up on the carpet throwing  her OCD out of control.  I heard the commotion, quickly went to investigate and found Dora on the floor in the bathroom sobbing and scratching deeply into the skin on her legs.  Her friend helped me clean up the droplets, work to calm Dora down, and went on the rest of the day as if nothing had happened.

Relationships are always a risk at any age, and will come and go throughout our lifetimes.  So even though this friend may be in our lives for only a year or two, depending on which direction each girl goes, I will always be forever grateful that Dora had one good friend during this challenging time in her life.

Springtime Struggles

After having a daily meltdown every morning for the last two years about what to wear (specifically what would be comfortable enough to wear), my PANDAS daughter made a serious break through over the winter.  She had been wearing clothes up to three or four sizes too big in order to keep the material from touching her skin as much as possible.  Not to mention that anything suitable for her to wear would need to be soaked in fabric softener and washed multiple times.

Unfortunately what gave her the courage to push the envelope was being teased by classmates about her baggy wardrobe.  I clearly remember the day when we were out shopping and she asked to try on some jeans.  Having been here many times before I expected the reject pile to be the only pile she ended up with, but this time it was different.  She actually found some jeans, off the rack in the GIRLS department, and was willing to give them a try.  I was dumbfounded and scurried to the checkout without asking questions or inspecting the price tag.  From that day on she continued to push herself a smidgen here and there - enough to end the winter with a modest collection of appropriately sized attire.

Here in Ohio unpredictable weather is, well....predictable.  Going from winter to spring has been a major setback leading back to the days of sunrise hysterics.  The ups and downs in temperature has become a new fixation for her PANDAS induced OCD.  Will she be too hot or too cold?  Should she wear carpis, jeans, or shorts....long sleeves or short sleeves?  What about a jacket?  These questions come at me over and over (and over and over) again all to be relived the next morning (and the next, and the one after that).

Springtime is one where most of us savor the balance of pleasantly cool and warm days.  When trying to point out this delicacy to my dear daughter I only receive stares filled with anxiety and dread.  My hope is for her to have a summer like this winter (or better!), without losing all progress made....and for her to have an autumn where she can embrace the joy of seasonal variety.

When I Found Out it was All My (Genes) Fault

Our family spent several months on the PANDAS roller coaster - the ups and downs corresponding with Dora being on and off antibiotics.  She would appear to be getting better and out of nowhere would fully regress and at times end up worse then when we first started her treatment.  I met with her pediatrician to discuss this seemingly never ending cycle late May of this year.  She had seen this pattern with patients before and said in every situation so far she was able to identify a strep carrier in the household.  This meant that my husband, step son, and myself all were to be tested first by rapid strep and if that was negative - by blood.  Since I was the only one there for the appointment she performed my swab that day and as soon as she looked down into my throat and saw my tonsils were missing she stopped to ask me a few questions.

I explained to her my personal history with strep (also listed here in my previous post), but was quick to assure her I had not contracted strep since my tonsils were removed six years ago.  The doctor corrected me by saying, 'No, you mean you haven't had a sore throat since your tonsillectomy, but I can assure you that you had and probably still have strep.'  She went on to explain that the constant exposure Dora has had to strep from her time in the womb on, would make her a very difficult case to treat.  Her body does not know - and has never known - that the step bacteria should not be there.  I had continued to feed her this toxic poison through my nurturing milk and endless kisses.

Along with the blood test for strep antibodies she also ordered an ANA test, measuring autoimmune activity, and a genetic test for MTHFR mutations (this mutation is related to multiple conditions that affect both the immune and nervous systems).  My daughter and I tested positive for both - linking the source of her PANDAS roller coaster to her strongest advocate...me.

I wrestled with the natural guilt and denial that surfaced but once I let reality creep in I could clearly see that my own body was fighting strep and facing its own autoimmune challenges.  For the longest time I thought I was permanently tired from working and being a mom, not realizing there could be something else going on and that it did not *have* to be so exhausting.  We started the same treatments and I am working to keep myself healthy so she can be.  It has actually brought us closer and she is more likely to try something new if I am doing it with her...like our newest adventure - going gluten and dairy free!

New Book Now Available for PANDAS Children

A Child's Introduction to Understanding PANDAS is now available!  You can find it on CreateSpace.com by clicking Here or on Amazon.com by clicking Here.

Our Pre-PANDAS Diagnosis Timeline

2002 - July:  I contracted Strep Throat while 7 months pregnant.
              September:  My daughter Dora Grace was born.

2003 - Dora was 6 months old when I contracted Strep while still nursing her.

2004 -  At 18 months Dora started showing signs of OCD.  I noticed it personally, but was also approached by her caregiver with concerns who felt it was something to watch.

2005 - I had a Tonsillectomy at age 25 after consecutive cases of Strep Throat and Tonsillitis (every 3 to 6 months).

2006 - I shared concerns with her pediatrician regarding increased OCD behaviors during her 4 year check up.  Her doctor advised me to go along with it and give Dora control over the 'reasonable' things that she was obsessing over...most of which were routines and rituals, nothing that was interfering with her everyday life.

2006-2011 - I noticed ups and downs in her behaviors over the years.  Specifically with her tantrums, crying spells, and OCD routines.  As time passed my husband and I even linked it to the times when she was sick but passed it off as: she wasn't feeling well, that's what makes her feel comfortable and safe, and even to her inhaler that she only needed during those come and go illnesses...convinced she was simply reacting to the steroids.  The good thing was, she would always get better and back to normal soon afterward.

2011 - Midsummer - Sudden and drastic change in behavior, new worries, new obsessions...new Dora.  Everything was magnified.  I started by reaching out to a psychologist hoping Dora would feel comfortable telling her the root of the daily crying spells and outbursts...since the only answer I received was, "Nothing!!" or "I don't know!"  After a long hour of silence and Dora leaving the counselling office angrier at me than ever before I decided to go to future appointments alone.  I spent the time explaining Dora's behaviors and learning the best way to help her deal with them.  Even though things were becoming manageable with the new tools I had gained, my concern continued to grow because she still was not feeling better and a new school year was approaching.

Our psychologist recommended I take Dora to her pediatrician to be evaluated for anti anxiety medication.  Immediately her doctor suspected PANDAS and did a blood test for Strep.  As expected the results came back positive with high levels of Strep Antibody and Dora began her first round of antibiotics for PANDAS.  This is when I first heard of and started to research and understand this complex disorder.  The more I learned the more I could see PANDAS had been our struggle all along.