Why Mama Panda Bear – Part 3

Facebook, June 30, 2012:  I feel like I need a week off work just to research my kid’s diagnosis and figure out how to do everything we need to be doing for him!

Facebook, July 2012:  ‘Need to buy a present for a bday party for one of The Dude’s classmates today. Asked him what she would like. He told me that girls like ‘dolls and pink and purple things. But they also like balls.’. Had to keep Hubs from busting a gut!’

So, as you can see from the above quotes, life continued on for us despite The Dude’s diagnosis but I spent most of my free time trying to come to terms with what was happening and what we needed to do to help him!

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Thanks for bearing with me through this multi-part story.  I’m glad you are interested enough to keep reading and hope that I’m helping someone who might need this information!  No, I’m not sure how many parts there are going to be when I’m finished.  I just write until I feel like I’m at a stopping point or am emotionally exhausted – whichever comes first.

At this point in our story, it’s early July 2012 and my appointment with the DO is impending.  The first Central Ohio PANDAS Support Group meeting that I can attend isn’t until July 19th.   In preparation for my first meeting with the doctor, I gather all of the research I’ve accumulated and make sure to have good, clear videos of The Dude’s neurological tics.  As I may have failed to mention in previous posts, every single time we went to see the pediatrician, the tics seemed to become far less pronounced and frequent.  There’s nothing like that kind of experience to make you think you are going crazy!  There was no way I was going into see this new doctor (an ‘expert’ on PANDAS) without physical proof of what we had been experiencing.

I arrive at the doctor’s office and am presented with a multi-page questionnaire about my son.  The doctor wants to know about his symptoms, his personality, his activities, his daily habits (food, elimination, sleep), any surgeries or procedures he’s had, any illnesses he has experienced and anything interesting that may have occurred during my pregnancy.  You think you know and remember everything there is to know about your child when they are 4.  But filling in that questionnaire was overwhelming!  And what were the implications? Just filling in the answers made me feel like I was doing everything wrong:

  • I got in a hot tub before I knew I was pregnant.
  • I stopped taking medication for depression before we conceived and suffered from severe depressive symptoms until I was 11 weeks pregnant. It got so bad that we gave up at that point and had a doctor put me back on Zoloft.
  • I had terrible UTIs during my 2nd trimester because The Dude’s head was compressing my bladder.  I was hospitalized and they gave me IV Cipro after several courses of oral antibiotics were unsuccessful.
  • I gave up nursing at 10 months. (Usually a point of pride for me…but what if nursing him longer would have kept him safe?)
  • My son had a cow’s milk protein allergy and was extremely colicky whenever I ate dairy while I was nursing.  Sometimes I ate pizza and tried to ‘pump and dump’ but what if I made him sick?
  • The Dude suffered from infantile asthma for the first 3 years of his life.  He was given a number of steroid bursts and breathing treatments in the hospital and had a nebulizer that he used daily at home.
  • He had a febrile seizure at 1 1/2 years old when I took him to the pool with a low-grade fever from teething.
  • He used ‘screens’ from the time he was pretty young and knew all the words to the Cars movie when he was 2.

All these things piled up as I sat in the waiting room completing paperwork and wondering what the doctor was going to say.  Had I caused this somehow?  Was there something I could have done to prevent it?  Mommy guilt is a powerful force.

After what seemed like hours (but was probably 45 minutes), I finally got in to see the doctor.  She spent a significant amount of time listening to me describe The Dude’s symptoms and asking questions about his history.  While she was very knowledgeable, I found her condescending and a little harsh.  My husband and I disagree on this point:  he wants the best doctor regardless of whether or not he ‘likes’ her.  I would truly prefer to have a good relationship with the 2nd best doctor.  Nonetheless, I knew I didn’t have a lot of choices and this doctor came well-recommended so I stuck it out.

While asking questions about his history, she indicated that taking antibiotics while pregnant was definitely a potential factor in the development of PANDAS.  I was devastated.  To this day, I don’t exactly understand what the correlation is but I have never forgotten the only thing I heard on that topic that day:  this is my fault.  She tried to alleviate some of my guilt by insisting that I had done the best I could under the circumstances but the deal was sealed by then.  She was apologetic, I was crushed.

She also had a lot of questions about his eating, sleeping and elimination patterns.  She was very critical of his diet:  my 4 year old was eating a typical American 4 year old’s diet.  He usually consumed burgers, chicken nuggets, mac and cheese and hot dogs.  He was allowed ‘treats’ of all kinds (non-dairy ice cream because of his cow’s milk protein allergy, popsicles, candy, etc.) as long as he finished the rest of his meal.  She immediately noticed (as you might have) that in the video I brought to demonstrate the severity of his tics, he was eating a red popsicle.  Food dye…in particular red food dye, was OUT!  Moreover, my dude had suffered from constipation for years (there’s actually a very funny story there that I might write about some time) and she was adamant that he needed to poop every day.  We were lucky, at that point, if he pooped every 3 days.

The new doctor also recommended that we needed to do everything we could to eliminate gluten.  My husband is very sensitive to gluten so I wasn’t terribly shocked or horrified by that recommendation but I knew we had major changes to make in what we were feeding The Dude.  I wasn’t sure I would even be able to get him to eat anything except his ‘standard fare.’  Based on her concerns about diet and elimination and his PANDAS symptoms, she recommended two or three supplements that she wanted him to begin taking immediately:  Enhansa (a particular brand of curcumin), fish oil and magnesium.  While fish oil could be acquired as a liquid, the other two products were capsules or pills.  I had a 4 year old!  How were we going to get him to take multiple pills a day?

The doctor also ordered blood work.  Here’s where I knew we were in trouble.  The Dude had been to the hospital many times for asthma, ear infections and a seizure but had never had a blood draw.  What magic did she know of that was going to get him to allow us to take blood from his arm?  I knew I wasn’t willing to hold him down to get it done and Hubs, unfortunately, faints at the sight of blood.  Luckily, she was prepared for that concern and recommended a particular branch of our local Nationwide Children’s Urgent Care as the best at phlebotomy for children.  I wrote down her recommendation but doubted the blood draw would be successful.  She stressed that we needed to check titers for The Dude.  In lay terms (and as best as I can explain it), titers in the blood can indicate an exposure or ‘response’ to a given bacteria.  An elevated (or EXTREMELY elevated, as the case may be) ASO titer would indicate that The Dude’s body was reacting to strep exposure in an unusual way.  Other elevated titers could indicate a response to Lyme or mycoplasma.  We needed to confirm that strep was the culprit here and that PANDAS was the correct diagnosis.

Finally, she handed me a book called The Autism Revolution.  That was the point when I almost walked out.  She had watched the videos, heard my child talk and interact with his brother and listened to my description of his intelligence and personality.  There was NO WAY that my child was on the autism spectrum.  I felt deflated…clearly she just didn’t get it.

Seeing my reaction, the doctor took the time to explain to me that she was perfectly clear that my child did not have autism.  Nevertheless, she wanted me to read the book and understand the mechanism that the author explained for what causes autism and what we can do to help children affected by it.  I clearly remember her saying, ‘If this had happened to The Dude when he was 18 months old, you might have a spectrum kid on your hands.  Instead, it happened when he was 4 1/2 and you have a PANDAS kid.’  I was confused, to say the least.

In my next post, I’ll explain what I learned from that book and how it impacted our understanding of PANDAS and our willingness to follow the new doctor’s recommendations.  I’ll also write more about the dietary changes we employed, the results of the blood draw and our adventures with supplements in pill form.

Part 4 to come!

Why Mama Panda Bear? Part 2

 

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Where it all started.  My husband and son sleeping mid-day because they both had strep!

So now it’s mid-June 2012 and I’m armed with a possible diagnosis.  I read everything the NIMH has available on PANDAS, print it all out and make another appointment with the pediatrician.

During the 3 days we wait to get into see her, I spend all of my free time researching PANDAS and posting on Facebook to see if anyone I know knows anything about it.  Two things happen that scare me to death:

  1. A friend, upon reading about The Dude’s symptoms on Facebook, reaches out to let me know that his wife is a social worker and that bedwetting, separation anxiety and OCD/tic behaviors often point to physical or sexual abuse. He asks if I’m sure my son isn’t being abused at school.  We love our school and I feel certain that’s not the issue but can’t help but worry.
  2. I read Saving Sammy in one sitting.  It’s a book about one child’s journey with PANDAS by Beth Maloney.  Beth Maloney’s website  While Maloney’s book was incredibly informative in a lot of ways, her son’s case was relatively extreme and went untreated for quite some time. Visions of my easygoing boy not being able to leave the house or go to school and wanting to kill himself keep me up at night.

For 3 days, I catastrophized about the possibilities:

  • It’s not PANDAS and someone is hurting my child.
  • It is PANDAS and we won’t be able to find a way to help him.  A lifetime of struggle, treatments and the permanent loss of my boy’s personality loom large.

Two things I learn from my research:

  1. PANDAS wasn’t originally diagnosed until 1998, so only 14 years of actual data exists on the condition.
  2. Some controversy about exists about whether or not PANDAS is even a medically-recognized condition and thus it can be hard to find knowledgeable doctors to provide care and treatment.

Finally, after what seems an eternity, we see the doctor.  The appointment lasts all of 5 minutes.  She admits she knows nothing of PANDAS but is willing to read the documentation I provide.  It indicates the the first course of action should be antibiotics and she offer to prescribe some if I’d like.  I agree and we walk out with a prescription for Bactrim.  Knowing that I’m effectively diagnosing, and developing my own treatment plan for my child doesn’t make me feel very confident.

It becomes my habit to research PANDAS every night after The Dude goes to bed.  He’s been on Bactrim for a couple of days and we’ve seen no improvement but I’m holding out hope that it will just take more time and a full course of the antibiotic.  Two days after our doctor’s appointment, while doing some of that research, I come across some additional information about strep and PANDAS:  apparently, Bactrim is not for strep.  If you want to treat it, Amoxycillin, Ceflex or Zithromycin are the antibiotics of choice.

While hesitant to be ‘that parent,’  I call the pediatrician’s office and leave a message indicating what I’ve learned and asking if Bactrim is really the best choice or if one of the other drugs might work better.  I don’t get a return phone call, only a notification from the pharmacy that Zithromax has been called in and filled for The Dude.

We finish the Bactrim (because I’ve always been told not to stop a course of antibiotics mid-flight and I’m not getting a lot of guidance from the doctor at this point) with no improvement and switch to the Zithromax.  Within 2 days, the tics stop.  His personality begins to return to normal and he’s no longer wetting the bed every night.  I’m stunned, thrilled and convinced:  we know what’s going on – he has PANDAS.

And yet, here’s where it gets tricky.  I have no idea what to do next.  I know we need to finish the antibiotics but it’s becoming very clear that our doctor doesn’t have a clue and, from what I’ve read, PANDAS can be a lifelong condition that requires constant intervention.  I’m stumped and worried.

When we finish the Zithromax, The Dude is 60% better.  Bedwetting is still occurring, though not every night, tics are almost non-existent and, while he is still relatively sensitive, he’s starting to seem more like himself.  But the antibiotics are gone and he’s not ‘cured’ and I don’t know where to go next.

Luckily, a 3-hour car ride to Cedar Point left me with plenty of time to dig around on the Internet.  In searching for ‘PANDAS Columbus, Ohio’ in the hopes of finding a doctor who might know something about the condition, I landed on ‘PANDAS Parents – Columbus, Ohio’ which took me to the Facebook page for the PANDAS Parent Group of Central Ohio. You could have knocked me over with a feather!  The associated website (Central Ohio PANDAS Support Group) had only been created a month before so I felt incredibly lucky.  I immediately reached out to the woman who ran the group and asked her to call me.  She called that night when we returned from a day at Cedar Point.

I told her my story much as I’ve told it here and she listened patiently and intently.  When I finished, I asked, ‘So, what do you think?’  Her response:  ‘I think you have a PANDAS kid.’  I had already read some of her child’s story online and knew that there were similarities in what we were experiencing.  I grabbed onto her like a drowning woman grabs onto a passing log.  ‘So, what do I do?  Who do you see?  Where should I start?’

She was incredibly patient and encouraged two things:  1) Make an appointment right away with a doctor who was very knowledgeable on the topic and practiced 20 minutes from my home and 2) Attend a PANDAS Parent Group of Central Ohio Support Group meeting.

I couldn’t believe there was a knowledgeable doctor near us and couldn’t wait to attend a support group meeting.  I made an appointment with the new doctor (a DO, or Doctor of Osteopathic Medicine) immediately and began making plans to attend the upcoming meeting.  The doctor was able to get me in within 2 weeks and suggested that, for our first appointment, I attend without my child to give her a sense for what was going on and try to bring video of his behaviors, if I was able.  Finally, we had a little hope and plan of action for what to do next.  More than that, we had support –  somebody knew what I was talking about and other people (in our community nonetheless) were facing PANDAS and surviving!

Part 3 to come!

Why Mama Panda Bear? (Part 1)

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Awww…isn’t he cute?  PANDAS…it sounds adorable.  Unfortunately, the PANDAS I’m referring to is neither cute nor cuddly and has, at times, been devastating for my family.

In May 2012, my 4 year old son (who had always been a super amiable, easy-going kid – we’ll refer to him as The Dude) began to exhibit some interesting behaviors.  These behaviors started out small and infrequent but became more and more pronounced and habitual until they were continuous.  At first, he started shrugging his shoulders.  My husband and I had begun to notice the shoulder shrug but, as he had always been sensitive to specific clothing and it was the beginning of Spring, we thought he was struggling to get used to the feeling of short sleeves on his arms again.  But it didn’t get better…it got worse.  We noticed increased frequency of the shrugging and wondered what was going on.  Then every parents worst nightmare happened:  someone else mentioned it.  You can deny and justify a lot of things about your own child alone with your partner but, on May 6th, 2012, my mother-in-law was over to celebrate her birthday and asked what he was doing with his arms.  At that point, we started to take it seriously. Someone else had noticed that something was wrong with our child.

Within days of that conversation, The Dude’s behavior progressed – he was constantly stretching his arms…then flinging his hands above his head.  He also seemed to be squeezing his eyes together repetitively.   As the behavior progressed, he would literally fling his arms out from his body over and over again from morning until night.  If he was eating with one hand, the other would continue to fling.  I’ve posted a video here so you can see what I mean.  You might notice both the arm flinging and the beginning of a eye tic.

 

 

(Note:  I have no idea what the conversation about a ‘guy who fixes Port-o-Lets’ was about but really…conversations with a 4 year old, right?)

 

While I recognize that he is still absolutely, stinking adorable…you have to admit:  the behavior is concerning.  Add to that – this went on for 10 weeks unrelentingly.

By June, we had begun taking him to doctors.  As most parents would, we started with our pediatrician.  This is a woman that we absolutely trusted.  I was a pretty ‘crunchy’ pregnant woman and, as was appropriate for the time, was very concerned about over-vaccinating and had strong opinions about natural childbirth and what was done to babies immediately post-birth.  (More on that some other time, if you are interested!)  I had interviewed pediatricians and family docs before The Dude was born and this particular doctor was very supportive of natural ideas and an immunization schedule that took things easier than recommended by the CDC.  We had has great experiences with her and her practice partners and they had been incredibly helpful with The Dude’s constant ear infections and infantile asthma during the first couple of years of his life.  Unfortunately, they were out of their league on this one.

During our first visit in mid-May, we were told that many kids exhibit tics at this age.  The Dude had done some light stuttering at about 2 years old and we recognized that his brain’s ability to process thoughts was outstripping his mouth’s motor skills with regard to speaking.  The pediatrician’s office made us feel that perhaps these new movements were perfectly normal and that The Dude would quickly outgrow them.  Within weeks, we recognized that he wasn’t. The movements were exacerbated…so we returned to the pediatrician.  At that point, the potential for Tourette’s was discussed and we were advised that, if he did have Tourette’s, there was nothing to be done:  we would simply have to wait until the behaviors reached a point that they were impacting his ability to function and then consider lifelong medication.  It wasn’t a very hopeful message and we weren’t seeing any improvement.

You’ve probably heard it said that, ‘There is nothing more powerful than a mother with a sick child and access to the internet.”  Well, that may go double for grandparents.  My parents had always been extremely involved in The Dude’s life…they live about 2 hours from us and drove (every single weekend without fail) to our house mid-Saturday, spent the night and drove home Sunday mid-afternoon.  They gave my husband and me a break every weekend to spend time together and built an incredible bond with our son.  So, they saw these tics develop and knew firsthand that they were unusual and concerning and that our doctors really weren’t providing a lot of insight.  It was under those circumstances that my mom began searching the internet for answers.

I’ll tell you the truth:  I thought she was crazy.  I as much as told her so.  But, in late June, I received a text from my dad that said, ‘Your mom thinks The Dude’s tics are because of strep throat.’  Now, I’ve always been considered the ‘smart one’ in my family and my parents occasionally don’t understand something that seems perfectly obvious to me…so I got on my high horse.  Everything I had researched pointed to Tourette’s.  Somehow, I never encountered language that indicated there were other reasons for kids to have tics.  I was absolutely convinced that my mother didn’t know what tics were or didn’t know how to spell ‘tic’ correctly or something!  What could tics have to do with strep throat?  I blew her off.

Unbeknownst to me, she had searched Google for ‘The Top Causes of Neurological Tics in Children’ (pretty smart, huh?) and come across an article that discussed ‘Other Causes for Tics.’  The article was primarily about Tourette’s but it explored, in one brief paragraph, other things that could be causing The Dude’s issues.  You can see that article here:  Tic Disorders Article from Childbrain.com

Mom noticed the reference to strep throat in the article and recalled that The Dude and my husband had contracted and been treated with antibiotics for strep in mid-April.  Once she got me on the phone and explained what she had found, she was able to convince me to read the article.  In order to explain what happened next, I have to give you a bit more background:

During the same interval in which we had noticed these tics (early May to early June), The Dude was also experiencing some other behavior changes.  He was 4 and had been dry at night for over a year.  Suddenly, in the middle of May, he began wetting the bed nightly.  He had been in daycare since he was 12 weeks old consistently and LOVED his school and his friends.  Around late May, he began clinging to us at drop off and would require 10-15 hugs before we could (with him still screaming and crying) finally leave him with his teachers.  Sadly, it never occurred to us to relate these behaviors to the tics.  We had seen mild regressions before (all parents do, right?) and assumed that he was ‘going through a phase’ and that it would work itself out with the right support from us.  We diligently gave our 10-15 hugs every day, talked to him about his love for school and never shamed him for wetting the bed.  Nothing changed.

As I look back at it now, his personality also started to deteriorate.  As you might be able to see from the videos, he was a happy, silly, amiable little guy.  Suddenly, life seemed to become hard for him.  Clothes didn’t feel right (he had always been sensitive and had strong preferences for certain socks and ‘no tags, Mommy’ but this was different), he seemed withdrawn and, in general, I started to feel like we were ‘losing’ the happy-go-lucky side of him.  Decisions were difficult for him to make…he seemed to be folding in on himself.  We had absolutely no idea what was going on.

So, that’s what we were facing when my mom sent me the article about tics in children.  I read the paragraph that you might have read if you clicked on the link above that said:

‘Tics may be caused by extreme stress, some medications including Ritalin, Dexedrine, and Adderall (stimulants), or Tegretol may cause them. On rare occasions, some infections that involve the brain (encephalitis) may be associated with tics. Other genetic and metabolic disorders, mostly those that affect the basal ganglia may be associated with tics or with tic-like phenomenon. Also viral infections may rarely cause tics. Streptococcal infections have been associated with the development of tics and obsessive-compulsive behaviors. PANDAS or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, is a known entity in which the antibodies to the streptococcal bacteria attack the basal ganglia causing the above-mentioned symptoms.’

Reading that, I hurriedly went to check our insurance records.  Sure enough, The Dude and my husband had received prescriptions for antibiotics to treat strep throat on April 15th.  I began to search further on the web, typing in PANDAS to see what else I could learn.  That’s when this happened:

‘Are there any other symptoms associated with PANDAS episodes?

Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

  • ADHD symptoms (hyperactivity, inattention, fidgety)
  • Separation anxiety (child is “clingy” and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
  • Mood changes, such as irritability, sadness, emotional lability (tendency to laugh or cry unexpectedly at what might seem the wrong moment)
  • Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
  • Changes in motor skills (e.g. changes in handwriting)
  • Joint pains’

(Whole article here:  NIMH article on PANDAS)

The highlights above are mine but the conclusion was obvious:  my child had PANDAS.

Part 2 tomorrow.

Why Me? Why Now?

It probably seems like I’m getting into this game a little late.  Mommy blogging has been a ‘thing’ for a long time now.  Isn’t everybody already doing it? What could I possibly have to say that you haven’t already read?  And why would I think that now is the time to start to a blog?

I guess I always thought my best, most entertaining stories were the ones about the exotic, exciting things I have done in my life.  Lately though, I’ve begun to realize that what I really value from others (and what they seem to value from me) are the everyday glimpses of authenticity that we share.  What’s hurting you today?  What made you laugh? What did you learn from life today?  What are you reading?  What’s blowing your mind (in a good or bad way?)

I also love to hear the stories that shaped people…that story about your mom that explains why you always wear lipstick to the gym.  The sadness you feel when looking back on that relationship you ‘ghosted’ in college. Your birth story.  Your best (or worst) day ever.  What’s making a difference in your life today?  What was the turning point in life for you?

So that’s what I want to write about.  I want to share my everyday stories…I want to write about the mundane moments that I vividly remember.  I want to write about marriage, motherhood, parenting a special needs kiddo, being a woman, being a reader, travel nerd, volunteer, lover, liar, friend.  I want to show you the best and worst parts of me and trust you to hold a space for me to do that.  

I want to share those stories with you…whomever you might be.  Maybe you’ll read something that reminds you of you…maybe you’ll read something you’ve never thought of before.  And maybe, in response, you’ll choose to share your stories with me.  I think we all crave connection and we all want to be heard.  Let’s carve out a small space in the digital universe to do both.  I’d be honored to allow you to read from my heart and stand guard if you choose to share yours.

Life, love and PANDAS*,

Shannon

*More on PANDAS later…