Mother and Daughter

Mother's Day Self Portraits

Butterfly kisses from Mom

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)

Dora's View (Stacation cont'd)

Me, trying to block the sun from my shot.

Looking...

UP!

Where I see trash she sees graffiti...

Staycation

I was fortunate enough to be able to take some time off work while my daughter was on spring break this past week.  We don't always do well one on one these days, as many conversations turn into arguments and our interests are not exactly aligned, but I am pleased to share that overall we had a mutually fun time.  One of the things we did together was explore our own city.  Normally we avoid going downtown because of the traffic and chaos, so my daughter really had not seen much of it before - except for when we would go to look at the winter light displays, and even that was at night.  We each brought our own camera and walked around the busiest streets in the city on Easter Sunday afternoon, which, as I had hoped, ended up being one of the calmest days of the year.  It was perfect for us.  After we came home and looked back through our pictures and compared them, it was beyond interesting how different each of us sees the world.  Here are a few of mine, and I am going to see if she will allow me to post some of hers... so keep watch for a follow up.

Getting My Daughter to Read (cont'd)

Following up from a previous post, How Can I Get My Daughter to Read?, I wanted to announce that we have made some progress in regards to Dora's story.  First of all, she is on board with me creating a fictional character pulled from my ideas and observations of her...as long as she ends up being the most written about. :)

I know there are many directions I can take the novel, since she has already been exposed to an array of topics in her twelve years.  Some of the issues she has faced most of us will never have to deal with, like having an alcoholic (biological) father and a chronically ill mother, or the fact that she has PANDAS and has experienced the mental torment of OCD and incessant anxiety.  However I also think the difference in what she witnesses on a daily basis in school compared to what I did would be a wonderful story to tell as well.

When choosing where to buy a home it was important to my husband and I that we be in a school district and neighborhood where there would be a diverse group of kids.  I grew up sheltered by the walls of a parochial school in a small town, leaving the number of non-Caucasian students limited to what I could count on one hand, so I promised myself that when I had children they would have a different experience.  My daughter has grown up among a  fairly even mix of Caucasian, Hispanic, and African American - including a concentration of Somali American students, whose families began migrating to our area of Ohio approximately 13 years ago.

I am surprised by how things are changing among these students as they get older, especially once they hit middle school.  In the beginning...kindergarten, first grade, pretty much all of elementary school, everyone played with everyone.  The kids did not segregate themselves by race.  There was still a popular crowd and there were loners, but the cliques would be mixed.  Through the 6th and 7th grade I have watched this change drastically as each race seems to pull together by a strong but invisible force.

I understand how this may happen as a way to make life easier.  Hanging out with other people who follow the same diet if you are Muslim, or being friends with someone else whose parents only speak Spanish.  What my daughter doesn't understand, and I am at a loss when trying to find an explanation for her, is why and when do they begin to bully each other?  She witnesses multiple fights a week. Fist fights.  And the surprising thing (to me anyway) is that they are mostly girls.  When we would have girls 'fight' in our school it was more like one clique not talking to another for a couple days and then all would be right in the world.  These girls get suspended for days at a time only to return with even more anger.

One thing I do know is true, and this is what I try and explain to her, is that there are plenty of adults that do not take the time to learn about and therefore understand and respect other cultures.  I know this because I work with adults and see this regularly and have even at times seen adults be bullied - specifically those of the Somali American population - which is infuriating....and then I think "Our kids probably go to school together".

So back to the novel (I know this post is getting a little long winded but this is a hot topic for me) it will be set in high school, probably sophomore year.  One girl with mental health issues (OCD/PANDAS) who obsesses about doing the right thing (cannot tell lies, etc.), befriends another girl who is being bullied because she is Somali American, but has to approach her in secret and keep their friendship secret.  If the rest of the school knew they would both be outcast from the groups of friends they each had already.  And of course together (in secret) they do wonderfully heroic things to keep bullies out of their lives - and others they know to be victims.  I want to concentrate on showing the Somolian culture to the reader, along with the struggles that OCD brings to a young girl's life.

Mothers and Fathers

As my husband and I approach the teenage years with our children the more we are starting to hear things like, "I wish I had different parents!" and, "Why can't you be more like me?" or, "If you weren't my parents I don't think I would ever have anything to say to you as regular people."...ooook.  I know this will only get worse, and if it will be anything like how I was as a teen it will be MUCH worse.  Looking back I can see that (at times) I was a pure brat.  My hope is, and I do believe this is normal for a lot of people, that when they reach their twenties and begin living life on their own perspectives will change and physically (brain growth, hormones, etc.) things will begin to even out and altogether turning our children into well rounded young adults.  This is when they will start to appreciate us again, as I did my parents.

I found this song by Broods, Mother and Father, exemplifying exactly this.  I think it is beautifully written and performed.  It gives me a sense of hope and forgiveness.

How Can I Get My Daughter to Read?

I can remember back when I hated to read; it was in the third grade when things started to change for me.  The turning point?  I actually finished reading an entire book - Henry and the Paper Route by Beverly Cleary.  The story itself was not as memorable, but I remember the satisfaction I felt when I had, for the first time, read the last page and closed a book from its back.  Then there was the feeling of, 'now what?'  I was left with such a sense of accomplishment that I felt I could read any book and therefore: GO anywhere, DO anything, and BE anyone.

I went up to the smartest girl in the class and asked her what she was reading.  She too had just finished a book and was willing to let me borrow it until the bookmobile arrived at school the following week.  After a quick shuffle through her desk she pulled out a hardback at least three times the size of Cleary's Henry.  I was mortified and even more so when she asked what I had finished reading, searching for a fair swap.  Before answering I backed out of the deal, telling her I wouldn't be able to read her book before it was due back.  Her reply, "Are you sure?  I had it done in three days."  I remember this specifically because it took me almost three weeks to finish Henry.  Before I thought I only hated reading, but now I knew I was bad at it too.  It was another two years until I decided to try and finish another book again.

Unfortunately my daughter seems to have been plagued with the same fate, despite my efforts to intervene.  Every year a teacher would tell us that she was either one or two grade levels behind in reading, but not to worry about it....just keep her reading.  This turned out to be the ultimate challenge.  As part of homework she was required to read 20 to 30 minutes depending on the teacher. She would regularly spend double that amount of time fighting me, desperate to find a way not to read at all.  Someone listening in would think I was beating her with the book rather than coaxing her into reading it.  The tantrums became part of our nightly routine and her loathing for books only deepened.

We did have her tested to ensure there was not a more mechanical issue keeping her from the enjoying the ample range of stories I had presented to her.  (This was also something required for her to qualify for a 504 plan as the diagnosis of PANDAS and anxiety were not enough to satisfy the school.)  All of the testing supported her mind's ability to see and interpret words within a range that did not require intervention.

This year in the 7th grade instead of having a teacher evaluate their reading level one on one, each student took a computerized assessment and at the end immediately received their own results.  At the beginning of the school year our daughter was at a 5th grade 7 month level.  She just took it again and was at a 5th grade 3 month level.  Her interpretation?  Not only does she hate reading, but she is bad at it too.

I have shared with her my love and hate history with reading, and expressed how it truly does take practice - just like anything else - and the more she reads the more she will enjoy it.  We have made numerous trips to the library exploring different genres and topics.  Checking out multiple books at a time she will make it one chapter in and give up - deciding the book is boring.  Recently, I came across an article about a dad with a similar issue with his 2 boys, and his answer was to write a story starring his sons. This is going to be my next attempt.  At age 12, my daughter is naturally self involved and if this is going to work now will be the time.   I am hoping it will be like how she is more likely to eat a vegetable if she planted the seed, watered it, and watched it grow and flower into a zucchini.

I will keep you posted on the progress.  In the meantime if you have any suggestions please let me know!  elizabethgibbs.author@gmail.com

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.