Lucas is 13 years old.  He has been feeling like he's on a boat or raft since October 1, 2017.  It is 24/7 - it never goes away.  Below is a timeline of all the medical professionals we have seen.   We have insurance.  Each visit is $25.00.   We have paid out $10,380 so far in therapies that are not covered by insurance, as well as all the copays.  We even traveled to Cincinnati to get treatment, so we paid for hotel and gas.  

Now we are looking at another $7500 in treatment plus airfare and hotel in Orlando, Florida at the Brain Plasticity Center.

We are now asking for financial support.  If you can give, great.  If you cannot, please keep us all in your prayers.  

We just want our son to be a kid and enjoy life.  His favorite pastime was riding his bike, which he cannot do.  The local Knights of Columbus donated money to get Lucas a recumbent bicycle which was great, but he is to unstable to ride it.  He cant even go outside and play with the neighborhood kids. He cannot attend school.  He cannot attend Boy Scouts.  He had to drop Robotics Team.

Please help Lucas get the treatment he needs to be a kids again.

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TIMELINE:

October 1, 2017
Lucas woke up at 10am
By Noon he was dizzy - feeling like he was on a boat or raft
went to urgent care that night
Gave him a Sudafed tablet because they thought it may be a sinus related

September 29, 2017 was his last day in the public school for his 7th grade year
 
October 2, 2017
Went to primary care physician, Joseph Luna.
Prescribed Amox-Clav 875mg tablets 1 pill 2x day
He sent us to get an MRI

October 3, 2017
MRI done a MIND Clinic and saw neurologist there, Dr. Harold Finkle.
MRI was normal, suggested seeing an ENT
Prescribed Meclizine 25mg 1 tablet daily for 7 days

October 5, 2017
Saw ENT, Dr. Khaled Shukairy
Said MRI was normal, prescribed more meclizine 12.5 mg 3x day, and Cephalexin 250mg/5ml (discontinue Amox).
Said it would go away with time.

October 9, 2017
Saw a Chiropractor.  Dr. David Stone.  
Took  X-Rays
Nothing unusual.
Adjustment made Lucas dizzier so we didn't return.

October 10, 2017
Saw ENT Dr. Mukkumula for 2nd opinion.
Told us he didn't know why we were there since MRI was normal.
Said it was probably viral and would last 6 weeks.

October 11, 2017
Saw primary care physician.
He prescribed Physical Therapy.

October 18, 2017
Physical Therapy for BPV
Made his symptoms worse

October 19, 2017
Back to Primary Care physician.

October 23, 2017
Admitted to Children's Hospital of Michigan through the ER by request of Primary Care Physician.
ER did an EKG and a chest x-ray.
Once admitted no tests were run.
Spoke with Cardiology, ENT, Neurology, Psych, Physical Therapy, and Occupational Therapy.
Discharged on October 25th.  Said it was Anxiety.

October 26, 2017
Back to Primary Care Physician
Back to ENT, Dr. Khaled Shukairy, for follow-up.  He ordered testing (hearing and balance)

October 30, 2017
Back to ENT, Dr. Khaled Shukairy, for hearing and balance tests.  Test results were normal. 
Suggested Neurological testing.
Suggested we see an eye doctor to check the back of his eyes.

October 31, 2017
Saw Ophthalmologist, Dr. John Waters, MD.
Eyes are normal.

November 2, 2017
Neurologist Mahammad Khan, for 2nd opinion.
Prescribed Clonazepam 0.5mg 1/2 pill 2x day
Prescribed Lamotrigine 25mg 1/2 pill 2x day

also had sleep study done at Mid Michigan Sleep Study per the advice of Children's Hospital (snoring) RESULTS WERE NORMAL

November 6, 2017
Physical Therapy

November 7, 2017
Neurologist Mahammad Khan, for EEG.

November 13, 2017
Neurologist Mahammad Khan, for follow-up.  
EEG Normal
Increased meds
Clonazepam 0.5mg 1 pill 2x day
Prescribed Lamotrigine 25mg 2 pill 2x day

November 20-21, 2017
Neurologist Mohammad Khan, for 24 hour EEG with video.  

November 27, 2017
Neurologist Mohammad Khan, for follow-up.  
24 hour EEG showed nothing.
Referred to Mayo Clinic

November 28, 2017
Seen at U of M ER
Dizzy spell was at its peak all day and never subsided at all.  ER doc said to have pediatrician order more tests, she couldn’t do it.

November 29, 2017
Spoke with Pediatrician, Dr. Luna.  He said maybe a 2nd MRI should be ordered but did nothing.

December 5, 2017
Saw Pediatric Electro-Cardiologist to rule out heart condition since Mom has tachycardia.  Found a murmur. Did an echocardiogram and results were normal.

December 6, 2017
Had a follow up with Children’s Hospital Neurology.  He ordered another MRI with 1mm slices with contrast.  Waiting for them to contact us.  It could be two weeks.  Also ordered Vestibular Physical Therapy.

December 11th
Dr. Luna ordered more blood work.

December 12th
Vestibular Therapy at 1pm

December 13
Saw Dr. Kenneth Vobach, pediatrician.  He reviewed Lucas’s case.  Waiting for blood work to come back and MRI results.  Then he will make the arrangements to go to Mayo Clinic or Children’s Hospital in Cincinnati.  We will be switching primary care physicians once the test results are back.

December 18
Seeing another ENT for second option, based on recommendation from someone with similar symptoms, on Monday Dec. 18.  Dr. Rosner ENT in Rochester Hills.

He thinks the falling and his lack of sleeping is Narcolepsy.  He thinks the “sway” is inner ear.

Also performed an Orthostatic Blood pressure which spiked upon standing, indicating POTS.

Dec 19
stopped Prozac per Dr. Rosner in preparation for Narcolepsy study.
Returned to Dr. Rosner’s office for a VEMP test for the inner ear.  Performed another Orthostatic Blood Pressure test and it spiked upon standing again.
Scheduled a sleep and nap study for January 7th and 8th to test for Narcolepsy.  Takes Lucas up to 6 hours to fall asleep at night.  Tired during the day.
Blood work results came back and his Epstein-Barr levels were very elevated.  Being sent to Infections Disease Center in Flint.

December 20
MRI with and without contrast performed at MIND clinic in Bloomfield Hills.
11:00 am Appointment with Dr. Rafee at infectious disease center in Flint for his Epstein-Barr levels.
Drew more blood to see where Lucas is in the course of the disease.  Because he’s had no fever or swollen glands or cold symptoms in the last three months, Dr. Rafee doubts it’s related to his dizziness.

December 21
VEMP test results will take two weeks.
Accepted by Mayo Clinic but they are scheduling into March.  Have to schedule a few other kids before they get to Lucas.
Mayo wants:
Echocardiogram
Autonomic reflex screen - Tilt Table
Neurology Consult
Psych Consult
Physical Medicine Consult

December 22
MRI is normal. Results being sent by mail to Dr. Luna

January 5, 2018
Met with Dr. Husmillo, Optimum Chiropractic and Neurology, Troy per recommendation of Dr. Rosner, ENT, and Dr. Stone, Chiropractor.
Findings:
1.   POTS
2.   Headaches
3.   Cervicalgia
4.   Vestibular Disorder
5.   Vestibular-Ocular Issues
6.   Balance Issues
7.   Proprioception issues
8.   Thoracic Myalgia
9.   Spinal Subluxations
Lucas will undergo therapy for 1 hour twice a week.
Cost is $2880.00 through December 2018.

January 8, 2018
Sleep study, ordered by Dr. Rosner, at Troy Sleep Center.  Sleep and nap study.
Sleep study was normal.  Nap study tested positive for Narcolepsy with Lucas entering REM sleep in 2 of the 3 15-minute naps.

January 10, 2018
Children’s Hospital of Cincinnati
Met with Neurologist, Audiologist, ENT, and did Vestibular testing.
Clinicians gave me printed charts of his tests and told me he has slight vestibular issues.  The official report that was sent did not say this, but instead said Lucas has anxiety.

January 23, 2018
Dr. Rosner, ENT
Started Lucas on Concerta 18mg in the AM, Ritalin 10mg in the afternoon.

February 15, 2018
Dr. Rosner, ENT
Added Trazodone 100mg at bedtime to help Lucas fall asleep

March 14, 2018
Dr. Rosner:  Follow up.  Keep on same meds.  See back in 1 month.

April 12, 2018
Dr. Habermehl, Flint, Michigan, Vision Therapy, Sensory Therapy, and Optometrist.
Evaluated Lucas’s vision
Findings:
Vision Functional Report:
Lucas was seen at our clinic for a vision therapy exam on April 12th, 2018. This is a summary of our findings and recommendations. Lucas is a 12-year old male who came to the clinic with a complaint of feeling like he is floating on a raft since October with spells of falling. He has been diagnosed with POTS, Central Vestibular Disorder, and Narcolepsy as reported on previous evaluations.  He is using medication at the moment for the treatment of narcolepsy. He is currently receiving neuro-chiropractic treatment with Dr. Michael Husmillo D.C..

Lucas’ examination on April 12th revealed that he has mild hyperopia, and no spectacle prescription was given at this time.  He was also found to have trouble with accommodation, ocular motor skills and convergence. The patient was instructed to return for an VEP, sensory treatment, and vision therapy.

Visual Functional Exam Report:
Lucas was found to have Ocular Motor Dysfunction. Ocular Motor function is the ability of the eyes to move accurately.  There are two parts: saccadic movement, which is eye movement from one object to another.  These types of movements are used while reading. Trouble with saccades can cause letter omission, skipping lines and trouble copying from the board. The second part is pursuit movement, which is the ability to track objects that are in motion.  This is used during sports.

He also was found to have convergence insufficiency (CI) which occurs when your eyes don’t turn inward properly while you are focusing on a nearby object. When you read or look at a close object, your eyes should converge- turn inward together to focus- so that they provide binocular vision and you see a single image. But if you have convergence insufficiency, you won’t be able to move your eyes inward to focus normally. Convergence insufficiency is usually diagnosed in school-age children and adolescents. Convergence insufficiency can cause difficulty with reading, which may make parents or teacher suspect that the child has a learning disability, instead of an eye disorder. Treatments are usually effective for convergence insufficiency.

This patient has accommodative insufficiency. Accommodative insufficiency occurs when the amplitude of accommodation (AA) is lower than expected for the patient's age and is not due to sclerosis of the crystalline lens. Patients with accommodative insufficiency usually demonstrate poor accommodative sustaining ability. Patients with accommodative insufficiency often complain of blurred vision, difficulty reading, irritability, poor concentration, and/or headaches. In accommodative insufficiency, the AA is less than expected for the patient's age. These patients may be able to make appropriate accommodative responses, but they expend so much effort that asthenopia ensues. They may complain about blur after sustained reading or at the end of the day. The fast-accommodative mechanism becomes fatigued and the slow adaptive accommodative mechanism takes over, resulting in blur.

 Summary:
Lucas was found to have Ocular Motor Dysfunction, convergence insufficiency, and accommodative disorder. Affected visual components can affect performance on exams, cause a decrease in perceptual skills, etc.  Consequently, we are recommending our sensory learning program with vision therapy. Sensory learning will consist of one hour a day for twelve consecutive days with at home treatment for 18 days.  Vision therapy should be started upon completion of sensory learning weekly for 1 hour. Due to his multiple conditions, it is difficult to report the duration of the therapy.  However, we will re-evaluate him often in order to keep his parents informed of his progress.
 

Sensory Table therapy to begin on April 16th
1 hour a day for 10 days
Light therapy at home for 18 days after that.
Cost of Therapy (Sensory, light, and Vision) is $7500

May 17, 2018
Began Vision Therapy, once a week for 1 hour

May 15, 2018
Told about Brain Plasticity Center in Orlando, Florida.
Talked to Dr. Husmillo.  He agreed it would be beneficial but suggested we try coming to him 3x a week and see if there is any improvement before spending $7500, since we just paid out close to $10,000 on medical bills.
Agreed to Monday, Wednesday, Friday for the summer months.

June 26, 2018
Follow up with Dr. Martin LaPaige at Mott Children’s Hospital in Detroit.  Lucas checked out great.  Dr. LaPaige said his POTS had stabilized and that Lucas has no cardiac issues.  GOOD NEWS!

July 2
Lucas went to Cole Canoe Base with his Boy Scout Troop and his Dad.  Lucas was walking close to 5 miles per day with a walking stick.  He swam and went tubing down a river.  He was actually a kid for the first time in 9 months!  On a scale of 1-10, Lucas’s dizziness was at a 3.

July 9, 2018
Met with Dr. Constantinou, Neurologist at Henry Ford Health Systems for 2nd opinion.
He ordered another MRI just to be safe.  Spent close to 2 hours with us reviewing Lucas’s case.  He increased his Concerta to 27mg.  Thinks Lucas may have a slight case of ADD.  Cannot explain the dizziness. 

July 16, 2018
Lucas fractured his foot jumping out of our pool.  He will be in a walking boot for a month.

August 13
MRI at Henry Ford

August 16th
Follow-up with Orthopedic doctor about his broken foot.  X-rays revealed his fracture healed and can get out of the boot.

August 20, 2018
Lucas started in the public school as an 8th grader.  He is very happy to be in school.  He is exhausted by the time he gets home.  He starts his day at a 3-4 on the dizziness scale and is at a 7-8 by the time he gets home.  He says he’s fine through the day, that the dizziness hits him as he’s at his locker at the end of the day.  LUCAS IS A KID AGAIN!

September 5, 2018
Met with Endocrinologist at Beaumont Troy at the recommendation of Neurological Chiropractor.
He reviewed Lucas’s labs and his file.  Said his dizziness is not related to hormones or cortisol levels.

September 10, 2018
Began Vision Therapy 2x a week.  His heart rate and blood pressure have stabilized with Neurological Chiropractic Therapy, so we will concentrate on getting his eyes better now. 

September 21, 2018
Lucas down with the flu.  No school.

 Lucas has not been in school since…

October 7, 2018
Lucas is extremely dizzy – a 9 on the dizziness scale.  Flu is gone, but he cannot function due to the dizziness.

October 12, 2018
Contacted Mayo Clinic to get him an appointment.
Contacted UDN (Undiagnosed Disease Network) through Harvard to get his case reviewed.
Contacted Brain Plasticity Center in Orlando to get him an appointment.

 October 15, 2018
Medical records reviewed by Brain Plasticity Center.  Doctors believe Lucas has undiagnosed and mis-diagnosed Vestibular issues.  Appointments available.  Cost will be $7500 plus airfare and hotel for 7 days.

 Requested Pediatrician:
1.    Fill out forms for Homebound program through school.  A teacher will come to the house once a week.
2.   Write a recommendation letter for the Harvard study

October 25
Lucas was accepted into the Mayo Pediatric Clinic. Scheduling will happen in the next two weeks. Looking at end of December, early January.

October 26 and 27
Lucas is very dizzy...off the scale. He’s falling a lot, like 8-10 times a day. Fell in the bathroom which was terrifying.