Kayla's Guillain Barre Syndrome battle

In July 2022, two weeks after receiving a Covid Infusion (July 1, 2022), Kayla began having numbness and weakness in both legs and feet.  Her family assumed she had a pinched nerve and she continued working and living just as everyone else around her.  On July 30th, 2022 she had to be taken to UTMB ER because she was having issues standing.  She walked into the Emergency room and those have been the last steps she has taken to date.

The day after Kayla went to the ER, her legs were completely paralyzed.

Here, we first-hand experienced misdiagnosis after misdiagnosis.  It took 6 days and a litany of tests, from MRI’s (6), CT scans (2), bloodwork, and finally a lumbar puncture to determine, Kayla has Guillain Barre Syndrome.   Guillain-Barre Syndrome or GBS for short, Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks your nerves. Weakness and tingling in your hands and feet are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body.  Simply put GBS causes nerve damage and destroys the protective covering of the peripheral nerves (myelin sheath), preventing the nerves from transmitting signals to the brain.  There are three types of Guillain-Barre Syndrome, Kayla has Acute inflammatory demyelinating polyradiculoneuropathy (AIDP), the most common form in North America and Europe. The most common sign of AIDP is muscle weakness that starts in the lower part of your body and spreads upward.

On the 7th day in the hospital, the doctors began administering IMG (Immunoglobulin Therapy). Immunoglobulin containing healthy antibodies from blood donors is given through a vein (intravenously). High doses of immunoglobulin can block the damaging antibodies that may contribute to Guillain-Barre syndrome. She had to have 5 doses.  One a day for 5 days.  The doctors said it would take at least two weeks, possibly longer to know if it worked once the doses were completed.

After completing IMG, and 12 days in the hospital, the insurance company said the doctors needed to send Kayla to an inpatient rehabilitation center.   She is sent to rehab in Pearland Texas.  It was there that the doctors found, after 5 days in the rehab facility, the GBS was continuing to move up her body.  She lost the use of her hands and began to have difficulty breathing and swallowing.  The doctors at the rehabilitation center, fearing Kayla was close to going on a ventilator, called for an ambulance to have her taken back to UTMB ER. 

Once Kayla was admitted back into UTMB, a second 5-rounds of IMG were administered.  The original five doses began to slow the progression and by the grace of God, she did not have to go on a ventilator, but she was now paralyzed from the neck down. 

After Kayla stabilized, and the progression of GBS was stopped, meaning she did not have to go on a ventilator, she was sent back to the same rehabilitation center.  During her stay at the rehab, the head neurologist of UTMB requested she be brought by ambulance to UTMB in Webster for a Nerve Conduction study where Electrodes are taped to the skin above your nerves. A small shock is passed through the nerve to measure the speed of nerve signals, and an Electromyography, where thin-needle electrodes are inserted into the muscles the doctor wants to study. The electrodes measure nerve activity in the muscles.

The test results were bad.

There was no nerve or nerve muscular activity in Kayla’s arms or legs.  The Neurologist, fully aware Kayla had received 10 doses of IMG, wanted to try another therapy to see if it would boost her regeneration, Plasma Exchange or Plasmapheresis.  So again, Kayla was sent back to the Rehabilitation facility so all of her belongings could be retrieved and she was taken to UTMB Galveston. 

The Plasma Exchange consists of a central line being placed in Kayla’s neck.  Then the liquid portion of part of your blood (plasma) is removed and separated from your blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. Plasmapheresis may work by ridding plasma of certain antibodies that contribute to the immune system's attack on the peripheral nerves.  This process takes longer than the IMG as you cannot have it done every day; there has to be a day or two break in between. 

Kayla was totally reliant upon the nursing staff, nursing assistants, and family to feed her, get her water, bathe her, and change her.  Not only does the GBS affect the arms and legs, but also the bladder, colon, and female reproductive organs.  Her bladder would no longer work and artificial means were instituted to drain her bladder.

When Kayla completed the Plasma Exchange, she spent the next 6 weeks at TIRR Memorial in the medical center.

Now we are being told by the doctors she does not have GBS and they try to diagnose her with CIPD, which is a chronic version of GBS.  We had to fight to keep her diagnosis provided by her neurologist.  She got involved with the TIRR team, and they finally changed her diagnosis back to GBS.  By this time, she is experiencing excruciating pain in her feet, arms, and legs.  There was little that could be done by family and medical staff to alleviate that pain but administer medications.  Again, when she seemed to be turning a corner, even with slight improvement, the insurance stepped in and said she needed to go to another rehabilitation center.  It is still unclear why the continuous movement to and from different rehabilitation facilities by her insurance company, but she lost valuable time and days her insurance covered for inpatient rehabilitation. 

Kayla was moved once again to Nexus Neurorecovery Center in Conroe, Tx.  Her mental health was declining due to the fact of all that is mentioned above, she was unable to see her child who was three at the time.  Also, because of the distance this facility was from her home in Galveston County, her parents were only able to visit on the weekend, but here, they were able to bring Kayla’s baby to visit her. 

Kayla was at Nexus where she began making great strides in her recovery.  She was outfitted with an electric wheelchair and the doctors at Nexus were able to gain control over the pain she had been in for the last three months.

Baby steps in recovery were happening, she was able to learn to feed herself, brush her teeth and hold a pencil or pen to write her name.  But her legs were still not recovering.  GBS is an ascending disease, from the feet up.  Her recovery, however long that will take, goes from top down to her feet.

I, along with my husband, took on the task of raising Kayla’s baby boy and continuing to be Kayla’s advocate where the insurance companies and occasionally, the medical personnel, would fail her.  It was during the first month of Kayla being in the hospital, her son was diagnosed with Autism.  We, Grandma and Grandpa, took on total responsibility for making sure that not only Kayla but her son, were taken care of and both received everything possible they needed. 

Kayla spent less than a month at Nexus, where she received intensive and extensive therapy every day, with Sundays off to rest and have family time, before the insurance company again said she had to leave and go to another rehabilitation center. 

Kayla was sent back to her original rehabilitation center in Pearland, where she had received wonderful care in the beginning, but this time, everything changed.  She was there for 8 days without receiving a single day's physical or occupational therapy.  All of the gains she had made at Nexus were gone.  I even found her laying on a soiled wet bed and someone had simply placed a few clean bed pads to cover the mess, instead of cleaning her or the bed.  Abruptly, on day 8 she was discharged home to her family, per her insurance. 

Our home had to be converted into a hospital room.  Everything has to be moved to storage and cleared out for a hospital bed, Hoyer lift, wheelchair, and all of the medical supplies needed to care for a patient. 

It took 3 weeks after Kayla’s arrival home for home health care to arrive to start their services.

She received 30 minutes of therapy twice a week.  The digression in her abilities was obvious even to the home health Physical and Occupational Therapists.   With 29 remaining benefit days for inpatient rehabilitation, the insurance company sent her home.

The expenses incurred by our family, mom & stepdad, have been extensive.  Kayla still requires round-the-clock care, she cannot stand or walk, although she can somewhat now move her legs.  She can also feed herself and move her arms and hands, but her fingers still do not work correctly. 

We have fought long and hard, for three months, to get her back into the rehabilitation center that helped her the most and where she made the most gains.  She has 29 days of inpatient therapy left.  Kayla now has nerve activity and muscle nerve connectivity down to the mid-lower leg.  Her ankles and feet are still completely paralyzed.  She is at a vital point in recovery.  If she does not get the therapy she needs to get strong enough to get up and walk on her own, she may never. 

If the insurance approves readmittance to inpatient rehab, once the 29-day benefits run out for inpatient rehabilitation, Kayla will have to leave, ready or not.  In order to give Kayla, the best shot at the very best recovery, her family will be paying out of pocket for her to continue at the facility.

Her walking again is more important to them, than the expiration of benefits for the year.  Inpatient rehab out of pocket will cost $ 1600.00 per day for her family to pay for her to get the help she needs.  They were told the first 30 days of out-of-pocket expenses must be paid upfront, that is $48000.00. But I want my daughter to walk again and at a minimum, be self-sufficient, and have some independence.  I want my daughter to be able to raise her son and have a normal, as normal as possible, life again.  Without help, we are not sure that will happen. 

We have taken on the financial burden of things the insurance company will not pay for and her everyday needs.  Her medical bills from five months in a hospital and rehabilitation centers are now in the millions.  Thankfully the insurance is paying a big portion, but the remainder falls on us to take care of, not to mention the things her insurance does not cover.  Things that we would never think about, diaper briefs, catheters, gloves, wipes, transportation to and from medical appointments, etc.  Also added to this, is the cost of a manual wheelchair (the insurance company said no since Kayla has an electric one) so she can be maneuvered in places the electric wheelchair will not go, ramps that had to be purchased to get the 500-pound electric wheelchair into a truck and ramps to get the chair into a house.  There are so many things, too many to list, that this family is paying for on top of their own day-to-day life expenses of their own.   

Our family is not a family that would ever ask for help.  We are hardworking, and now caring for two (our daughter and grandson) who can no longer or able to care for themselves.  Please help if you can.  We would be forever grateful.