Even if You are Exhausted, Pretend to be Strong and Hopeful

This week, today, tonight…I am exhausted. Plain and simply exhausted. Today our daughter’s anxiety was high, debilitation apparent, we had multiple care team consults and completed intake paperwork (including updates to our daughter’s health timeline) to initiate a Neuropsyche evaluation. This must be the 10th (or maybe 20th…I have lost count) intake/referral package my husband and I have tackled.

I am reminded tonight that our daughter’s health timeline is powerful - it illustrates her journey and strength. It is in these moments of exhaustion and frustration that I need to pretend to be strong and hopeful…for my daughter, my children, my husband and myself (hoping…daring myself…telling myself to believe it…embrace it). There is plain and simply no alternative.

The below timeline is shared to be informative and educational. We hope it might help another family feel not alone in their journey and feasibly something to be learned or considered that might help a loved one. The one thing I have learned about mental illness…is all the things we do not know.

Our Daughter’s (Our Family’s) Journey

9/16/20:  Our daughter experienced acute anxiety and panic attack or panic-like event at well-child check in anticipation of vaccines.

I struggled to get our daughter out of the car and into the medical facility.  She was hesitant and in tears.  In the exam room she suddenly demonstrated symptoms of a panic attack – something I had never witnessed.  Butterflies in her stomach, dizziness, tingling in her hands and loss of feeling or weakness in arms and legs.  She did settle down and received vaccines like a champ - flu shot, 1st HPV vaccine, Meningococcal MCV4, Tdap.

9/17:  Our daughter called us from dance studio – panic attack in restroom – asked us to come get her

9/18:  Pediatrician prescribed hydroxyzine and recommended counseling if symptoms did not improve in a few days.  Stopped hydroxyzine after 24 hours – dropped our daughter’s heart rate enough that she was scared and uncomfortable.

9/22:  Daughter’s symptoms were significantly worse – seeing some anxious trembling, combative behavior and screaming.  We called a nurse who recommended we take her to Children’s.  Children’s ran a variety of tests/bloodwork.  Only red flag was irregular thyroid results, but not conclusive or significantly alarming.  They sent us home with a few doses of Ativan (Lorazepam) to control elevated panic attacks and recommended we see her pediatrician.  Social Worker recommended our daughter see a counselor immediately.

9/25:  Pediatrician drew more blood for additional follow-up and started our daughter on Fluoxetine.  We completed our intake appointment with a counselor.  Our daughter’s symptoms continued to worsen.  Symptoms had migrated from butterflies in her stomach to feelings more relatable to a heart attack – chest pain, shortness of breath, increased dizziness, weakness in arms and legs.  She was beginning to become truly terrified and as a result increasingly frustrated, angry and combative.  She started to say things like “I cannot live like this.  Make it stop.  I will make it stop.  I want to be with our dog in heaven.” 

9/29:  Daughter’s symptoms were so bad we no longer felt she or our family was safe.  At the recommendation of the Washington County Crisis Hotline, we brought our daughter back to Children’s in St. Paul.  At Children’s she was deemed unsafe to be home and admitted.  Recommended by social worker that she be medically cleared and transferred to inpatient mental health hospital.

Our daughter spent 7 days in the hospital waiting for an inpatient mental health bed.  Every day her symptoms got worse while we waited.  The hospital stopped giving our daughter Fluoxetine thinking it may have contributed to her suicidal thoughts.  The hospital attempted to show her some coping mechanisms for her anxiety, but her ability to control or regulate her sensory system continued to degrade.  Only toward the end of our stay did hospital personnel agree tamping down or proactively treating our daughter’s symptoms was necessary.  My husband and I fought for answers challenging medical personnel to over-turn every rock.  At our encouragement (after already medically clearing her), doctor-on-call ordered a MRI, EEG, neurological exam and exam by a psychiatrist.  MRI and EEG were never completed after neurological exam.

Our daughter’s symptoms worsened throughout the weekend.  Panic attacks were lasting hours and symptoms never went away – she had ongoing feelings of dizziness, shortness of breath, feeling life is not real and chest pain – went to sleep with them and woke up with them.  Constant urination.  Hospital started collecting and testing urine.  Noticed OCD behaviors – our daughter started picking at eyelashes and eyebrows.  Becoming obsessed with candy and angry if not received.

In our daughter’s worse moments, she would be screaming, pounding walls and windows, on the floor crying, combative to those helping her and hitting herself.  At one point on Sunday (10/4) we were asked to leave the room because she was so bad sedation or restraint were being considered.

10/5:  Our daughter was transferred to PraireCare’s Mental Health Hospital in Brooklyn Park by ambulance.

10/5 – 10/14:  Our daughter’s stay at Brooklyn Park Mental Health Hospital.  Guanfacine and Sertraline (Zoloft) started.  Her panic symptoms stabilized.  Family requested her strep titers be tested and PANS or PANDAS be considered. 

10/14:  Our daughter came home.  Happy and excited to be going home.  Did not look well, but extreme behavior seemed stabilized.

10/14:  Family learned of high risk Covid exposure.  Quarantined.

10/15 – 10/18:  Our daughter hit a low state of depression.  Wanted to see nurse McKenzie at PrairieCare Brooklyn Park as she was comforting.  Attempted to run away on multiple occasions to find McKenzie.  Required constant supervision to keep safe.

10/18:  Family tested for Covid.  Learned we were negative.

10/19 – 10/23:  Our daughter started at PrairieCare Maplewood Intensive Out-Patient Program or Partial Hospitalization.  Psychiatrist suggested we test for PANDAS.  Bloodwork scheduled for Friday (10/23).  Our daughter was very depressed and angry this week.  High Anxiety, panic and obsessive behaviors continue.

10/23:  Our daughter mentioning she wants to die.  More about not wanting to live like she is feeling and less about hating her life.  Psychiatrist recommends she spends the weekend at Brooklyn Park’s Mental Health hospital and a medication change from Guanfacine to Clonazepam.  Medication change was a game changer for her – an upper versus a depressor.

10/26:  Our daughter is released from Brooklyn Park Hospital.

10/28:  Readmitted to PrairieCare Maplewood IOP or Partial Hospitalization.  ½ day program.  Attempted school portion at home with Stillwater School District.

10/28 – 11/23:  Our daughter attended Maplewood IOP or Partial Hospitalization.  Headaches, dizziness, feelings of life not being real and icky feeling in her stomach are consistent and continue.  Advised either medication or psychosomatic symptoms.  Continues to be obsessed about candy and urination.  Picking eyebrows and eyelashes.  Does not look well.  Panic decreases a little, but generally she does not feel well.  She is trying hard to be better.  Struggles to do school or dance.  Both cause anxiety and panic.

11/3:  MRI at Children’s in St. Paul

11/4:  Approximate date 10 days of Penicillin started – Strep Titers 231

11/25:  Road trip to Florida - a favorite place for our daughter - hopeful it might bring her some peace and joy. Our daughter started 5 days of Azithromycin.  Her panic symptoms start to worsen significantly.  Presenting almost seizure-like.  Fisting of hands, faces contorts, stuttering of words, loss of words, irrational thought, behavior that does not make sense.  Overall noticed increasing immature behavior and reactions over last 3 months.  Daughter as we knew her rarely seen.  Overnight change in September.

11/25 – 12/4:   Daughter’s symptoms continue to worsen.  Always worst at night. Typically mornings ok.  After noon or 12 pm we notice she starts to degrade.  By 3 pm anxiety/panic becomes more possible.  After 5 pm typical.  8 pm very typical.  Fear, thinking she is going to die, life is not real, she is not real, we are not real, seizure-like attacks.  Psychiatrist quadruples her Clonazepam.  We notice her behavior and overall feeling of icky worsens.  We stop it on Wednesday (12/2).  We substitute Ibuprofen and notice it makes her feel better – helps headaches, dizziness and overall feelings of ickiness.  Does not completely control panic with one dose, but does help curtail it.

12/4:  Daughter and I fly home from Florida.  Our daughter flies without medicinal assistance.

12/8:  See new PrairieCare Medication Manager in Woodbury who suggests again she has PANS/PANDAS and we schedule an appointment with PANS/PANDAS specialist.  Suggests we start supplements such as Fish Oil, Magnesium, L-Theanine, Inositol.  We continue Vitamin D3 – identified earlier she is Vitamin D deficient.

12/13:  Connected with a parent of a PANDAS child.  Suggested we start regular doses of Ibuprofen or anti-inflammatory to reduce swelling in brain.  Coupled Ibuprofen every 6 hours with supplements mentioned above.

12/14:  Connected with Stephanie Belseth at Newbridge.  Suggested we start CBD and consider diet change.  Scheduled appointment for 12/28.

12/17:  St. Louis Park pediatrician (Stephanie Lindberg) called to advise per research/peer advisement we continue an anti-inflammatory and start our daughter on 30 days of 250 mg/ml Cephalexin, 10 mls, 3Xs a day.

12/18 – 12/22:  Noticing CBD does not work as well as Ibuprofen.  Taking in most cases 2 -3 capsules a day.  In addition to all supplements, a dose of Ibuprofen around 3 or 4 pm.  But overall new regime has given us our daughter back – we see personality return, she looks better and behavior improved a bit.  Immature behavior continues, but overall much more agreeable and helpful.

12/23 – 12/27:  Our daughter’s panic symptoms worsening again.  Lots of fear and life is not real.  Episodes can last 15-30 minutes.  More frequently.  Has complained of a sore throat over the last few days.  No other symptoms.

12/28:  Neuro Quant MRI, 19 channel qEEG brain mapping, extensive blood tests and Cunningham Panel ordered by Newbridge Clinic in Edina, MN.

12/31:  Neuro Quant MRI and blood tests completed

1/11/21:  Follow-up appointment with Newbridge Clinic.  Immune vulnerability could be a factor, the up-trending of strep antibodies is significant based on her symptoms.  Specialist thinks there is an inflammatory, immune-based issue.  Concerned about POTS.  Per NeuroQuant MRI seeing inflammation and atrophy in the brain.  Shows that our daughter’s Medial Orbitofrontal is atrophied.  This would indicate trouble with executive functioning, which parents have confirmed.  The temporal pole is also atrophied on the right moreso than the left.  This could indicate injury or infection in these areas of the brain.  Cerebral gray matter, thalamus, putamin, pallidium, primary motor, inferior temporal and supramarginal, all are showing up as inflamed portions on her report.  Histamines are high – nearly double average or normal.  Strep, Parvovirus B19 IGG & IGM and Coxsackie B Antibodies high.  IGG Borderline deficient.  Eosinophil Absolute is high.  Specialist curious about Lymes Disease and Mass Cell Activation.  Cholesterol, Zinc and Iron low.  Additional medications/supplements added:  Zinc, Zyrtec, Super Milk Thistle, Meriva Curcumin, BioPure Cocktail (for possible Lymes).  Additional blood tests ordered.

1/19:  Suggested by Children’s Infectious Disease team that our daughter see Gail Bernstein at U of M Fairview.  Our daughter’s chart sent over for review.

1/21:  Additional blood tests completed as ordered by Newbridge Clinic.  Our daughter saw a Neurologist at Noran Clinics for a 2nd opinion.  Not familiar with a NeuroQuant MRI – not seeing inflammation and atrophy in brain.  Has ordered a Mayo Auto-Immune Panel – suspected Auto Immune Encephalitis or Encephalopathy.

Month of January:  Our daughter is back to her old self and fairly “normal” 90% of the time.  Cannot engage in anything school related without panic attack.  Has re-engaged and dancing again with her competitive team.  Doctors, disagreements between siblings or with parents, “no”, high anxiety/stress moments cause a similar reaction or panic attack.  Panic attacks are getting more violent.  Look like a severe temper tantrum.  Inability to control arms and legs.  Hits herself and objects.  Fear she may hurt herself or others trying to help her.  Screams at top of lungs.  Can last a couple minutes to 30 mins or an entire hour to calm her down.  Nothing (medication or coping mechanisms) help our daughter once escalated other than to hold/hug her or significant sensory change (i.e. bath).  Impacting other children in the home – have to remove children from home when our daughter is having a bad episode.

Late January/early February:  Meeting with our daughter’s PrairieCare mental health counselor and school counselors to discuss additional support needed for school.  A 504 Plan has been drafted.  Parents requesting counseling for entire family including younger siblings who do not understand – seeing anger, confusion and tears.

1/31:  Our daughter’s anxiety and panic symptoms worsening.  Started 5-day dose of Prednisone.  20 mg dose 2x a day prescribed.  20 mg too much for our daughter.  Gave 10 mg dose 2x a day or ½ dose for 5 days.  Interrupted sleep.  Panic and anxiety exacerbated.  2/5 last day of Prednisone.

2/1:  Appointment with Newbridge Clinic to review most recent bloodwork.  Our daughter prescribed ValACYclovir 1 gram oral tablet, 1 tablet, 2 times a day for 30 days.  New supplement added for suspected toxin exposure (N-Acetyl-L-Cysteine NAC 900 mg, 1 capsule 3X a day).  Raised concerns regarding increasing anxiety and panic.  Asked to decrease medication/supplements.  Little if any removed.  Taking 22 items 1 – 3Xs a day.

2/1:  Started raising concerns with PrairieCare – counselor and medication manager regarding increasing anxiety and panic.

2/4:  Our littlest has a sore throat and low-grade fever.  Tested for strep and Covid – both were negative.

2/12:  Family tested for Covid – negative.

Week of 2/14:  Conversations with PrairieCare, Medica and Washington County Crisis Team regarding concerns and severity of anxiety and panic.  Concerned for our daughter’s safety (injury during panic episodes and increasing “bad thoughts”).  Considering Maplewood, Aris or Rogers day programs.  Cannot manage at home.

2/17:  Our daughter taken to U of M Riverside Hospital ER due to severity and safety concerns.  Admitted for one night.  Met with psychiatrist and infectious disease team (including Dr. Sharon).  Team currently believes severe panic disorder.  Questionable Auto-Immune Encephalitis or PANS.  Increasing Sertraline (Zoloft) dosage to 75 mg and considering as much as 100-150 mg.  Adding Trazodone.  12.5 mg once a day…could be used twice a day.  If it zonks her out – consider as an “As-Needed” option for panic.  Recommending we stop all anti-biotics/supplements to give her body a break.  Not seeing benefit or change.  Engage a psychiatrist and additional behavioral support – consider Rogers.  Cancelled next appointment with Newbridge.  Onboarding additional psychiatric and behavioral support.

3/1:  Appointment with Dr. Sharon at U of M Riverside Hospital.  Infectious Disease.  Recommended focus on behavior and psychiatric treatment support and treatment. 

3/2 – 4/27:  Counseling increased to 2-3 times a week.  Onboarded 2nd counseling team (Acres for Life).  Sertraline increased from 75 mg to 125 mg via 12.5 mg increments over the course of weeks.  Noticed low blood sugar having significant impact on behavior/increased anxiety/jitters/dizziness – increased snacking to avoid what we assume is low blood sugar or impact of medication.  No longer able to go to dance practices, but can attend dance competitions.  Anxiety continues to be extremely debilitating.  Continue to see behavior/intellectual/age regression.

4/28:  Care counsel with our daughter’s entire medical/behavioral team (case manager, PrairieCare behavioral counselor/med manager, Acres for Life Equine Therapy behavioral counselors, pediatrician, school counselor).  Physical, vital check, gene testing, hormone testing, increased counseling, change in medication plan, EEG and Neuropsyche evaluation discussed.

5/8:  Pediatric appointment.  Height (5’-0”) and weight (83 lbs) growth normal.  Great BMI.  Appointment ended abruptly due to panic attack.

5/10:  Gene testing complete and reviewed.  Recommended med change.  Instead, adding anti-anxiety booster (Buspirone, 5mg – increase to 10 mg daily) to 125 mg of Sertraline to assure additional support onboard before making med change not knowing efficacy of one or both.

5/11:  Follow-up meeting with pediatrician.  Suggested we prioritize Neuropsyche evaluation, additional psychiatric consults and possible referral to Mayo.

5/12:  Meeting with daughter’s Canvas Health case manager.  Advised our daughter’s anxiety is acute and panic attacks severe.  Situation and response unusual.  Not a typical case.  Need to consider medical reason for behavior/psychiatric changes again.