All about Guillain-Barré Syndrome - Alex, a 13-year old, recovered from suspected Miller Fisher syndrome (MFS)

Our 13 year old was afflicted with severe onset MF variant rendering him completely paralyzed in 16 hours.

Alex woke up on the morning of August 6, 2002, with severe vomiting. He couldn't hold down water. By noon, his voice had changed, with slurred speech. He was spitting out his own saliva, because he couldn't swallow. In retrospect, he was experiencing decending paralysis, but, of course, we didn't know it at the time.

That evening, we took him to the ER at Children's Hospital, Seattle. They ran a plethora of tests and couldn't figure it out. His breathing became more difficult and he was eventually intubated and admitted to PICU. He was paralyzed from the nose down.

Children's Hospital, Seattle, sees about 20 GB cases a year and personnel are familiar with the process. By day 4 they had narrowed the differential diagnosis to GB, MF, rabies or botulism. An EMG ruled out all but the GB or MF. He was started the next day on a five day course of IVIg.

We are not entirely sure if Alex had MF since we did not let the hospital do a second lumbar puncture to confirm the diagnosis. However, Alex initially experienced decending (as opposed to acending) paralysis. He did have double vision for a short period of time, but this cleared pretty quickly.

Some weeks prior to Alex's onset, I had a lengthy discussion with a chiropractor who believed that brain swelling or inflamation takes place in most disease processes. After Alex was affected, my wife Lauren and I discussed having this doctor come to the hospital and adjust Alex. We both came to the conclusion that the worst that would happen was nothing.

I spoke with the chiroparactor, who specialises in cranio-sacral adjustments, and he adjusted Alex's cranial plates several times over the next three weeks. My wife Lauren, also a chiropractor, adjusted Alex's spine and neck, so in addition to standard medical treatment, Alex received weekly cranio-sacral adjustments as well as weekly spinal and neck adjustments.

I noticed the effect almost immediately. His face seemed more relaxed and not lopsided as it had been appearing. Small levels of function started to return.

Chiropractic manipulation specifically affects the nervous system. It doesn't really add anything and nothing is taken away. Therefore, the worst it's likely to do is nothing. That's a very small risk compared to the overall potential benefit. If GB/MF is an inflamatory process, anything that would relieve or lessen the inflamation, should help in bringing about healing.
I am not discounting the IVIg or other therapies that helped keep our son alive while he healed. But, I do believe that there are adjuncts that can help the body heal.

Alex could not speak, for 2 reasons: first, his throat was paralyzed, and second, the breathing tube is placed between the vocal cords preventing vibration.
In terms of communication, I discovered that he could partially blink one eye and we used that as his signal for responding to questions. He could not close his eyes completely, though, even while sleeping.

We communicated through story boards and simple yes no questions. We started asking simple yes-no questions in broad topic ranges and then would narrow down the questions to close in on what he wanted. For instance, "Is it something to do with your body?" If he responded that it was, then the questioning would become more refined, "Are you in pain?" If yes, then "Is it something to do with your head? Chest? Legs?" etc. We also used storyboards with pictures and an alphabet. These were of some use and were provided by the hospital.

Alex has some food allergies, especially high fructose corn syrup, milk and eggs. The liquid they fed him through the NG tube contained the very stuff he was sensitive to and we eventually found a soy based product that the hospital approved. Once we started on that formula, his gastric upset quieted over a short period of time.

In addition to IVIg, Alex was on a number of drugs including regalen, beta blockers for severe spiking blood pressure, tylenol, morphine (later methadone) and ativan. We had Alex adjusted regularly, kept him as comfortable as possible and went through total hell.
We lived at the hospital and became the corporate memory for the various doctors, nurses and specialists. We were Alex's advocate. We kept many doctors away from him (which is important in a teaching hospital), tried to get him some rest, and prayed. His breathing function slowly got better and by the end of the third week, he was extubated and breathing on his own.

He was now moved from PICU to rehab. He started daily courses of PT, OT and speech. His swallow reflex slowly returned as did gag and cough. Most of the meds were weaned. However, when they weaned the ativan, it was done too quickly and Alex had a seizure. It scared the hell out of us. They restarted a prophylactic dose of ativan and weaned him slowly with no further seizures by day 40.

He was discharged on day 50.

He was now off all meds. He had some outpatient PT for 4 weeks and has been at home since, going to school several hours a day, about 3-4 days a week.
He recovered to about 95% of pre-onset condition within 90 days.

November 2002
Alex now has good and bad days with bouts of fatigue and nerve pain being the common side effects of this disease. He is experiencing the typical post GB/MF nerve regeneration pain as the myelin recoats the nerve sheaths.
He continues to get the cranial and spinal adjustments with good effect. He goes to school, plays with friends, plays video games constantly (like before) and is fairly normal. We have been and are very honest with Alex about his condition and he understands his limitations.

I would highly reccomend cranial and spinal adjustments as an adjunct therapy for GB and MF patients. I have no proof that it does anything, but I also know what I've seen. There is no data or any other test that can confirm what I know subjectively, these adjustments did a great deal of good in helping him heal and have been a beneficial compliment to traditional treatment.

We have been blessed with our son's life and health, and we pray for and work toward his full recovery.
I hope that this short history helps others realize that there is hope for a full recovery.

Jeffrey J. Donchez

Received 12.2002
"Alex was examined by the Chief of Rehabilitation at Children's on November 20, 2002. He was given a clean bill of health and discharged from clinic.

Alex returned to school full time on December 2. We have received our early Christmas present and are grateful".

Received 03.2002
Alex has made a good recovery, thank God. It is now March 2, 2003.

Alex was discharged from the hospital September 26, 2002, after 59 days in the hospital. At discharge, he was able to walk some and perform most activities of daily living, albeit slow and with fatigue.
For the first 60 days he slept a lot. He had lost 1/4th of his body weight, about 30 lbs. We encouraged him to eat when he was hungry and sleep when he was tired. We conferenced with his school to admit him for 2 hours per day. In the beginning, he only went 2-3 days out of 5. Around the beginning of December '02, his strength started to pick up and we switched to full days at school. He made it to school about 3-4 days a week.
Currently he averages 4-5 full days a week, plays basketball with his friends, rides his bike and does most normal activities. The fatigue is still there and manifests itself when he over-exerts himself, although the "wall" of fatigue is further out now.

Several messages are important.
First, trust your child's instincts and give the child the benefit of the doubt. Find the balance between pushing the child to do more and allowing them the rest they will need to recover. When in doubt, keep the big picture/goal in mind - their full and complete recovery. We decided to err on the side of caution and trust that when he said he was tired and didn't want to go to school, that it was OK to stay home. I'm sure there are days when he could go to school but doesn't want to. So what. In the long run, it won't matter.

Second, find/develop support mechanisms to take some of the burden from you. Friends, family, others are willing to help, but need you to ask them. Different people's energies will help the child and give the child perspectives that are different from your own. While my wife and I are still recovering from our experiences with him in the hospital, we got on with our lives as much as the situation would allow. Cement relationships between husband and wife and family. Deal with fears of relapse and get counseling, if necessary, to deal with the post traumatic stress issues that invariably arise. Take care of your child, but as important, take care of yourself. If you are not well, you can't take care of yourself or anyone else.

Third, continue support in the form of supplements that support and build the nervous system, chiropractic care, massage, the child's favorite meals or movies. Finally, try to have some fun and laugh. Keep the big picture in mind and have faith that all will work out in time.

I hope this helps.
Jeffrey J. Donchez
3/2/02