TVCH FORUMS HOME . JOIN . FAN CLUBS . ABOUT US . CONTACT . CHAT  
Bomis   Quick Links   TOPICS . TREE-VIEW . SEARCH . HELP! . NEWS . PROFILE
GBS Miller-Fisher Variant

The TVClubHouse: General Discussions ARCHIVES: 2005 Dec. ~ 2006 Feb.: Health Center: GBS Miller-Fisher Variant users admin

Author Message
Kep421
Member

08-11-2001

Wednesday, August 17, 2005 - 11:21 am   Edit Post Move Post Delete Post View Post Send Kep421 a private message Print Post    
My 10 year old grandson (whom I'll call Spidey, his favorite superhero) was recently diagnosed with Guillain-Barre Syndrome/Miller Fisher variant http://www.ninds.nih.gov/disorders/miller_fisher/miller_fisher.htm

This malady is rare and affects about 2 out of every 100,000 people. I'm researching this as much as I can online, and while I'm getting all the medical whys and wherefores, I'm not able to find information from people who have actually survived and recovered from this scary illness.

The prognosis for my grandson is good...because he is so young, the specialists are expecting a full recovery. We've been told that Spidey will get worse before he gets better, and that he may even be on a ventilator for a bit. The Drs won't give me much information about what to expect, because this illness is so unpredictable.

Has anyone encountered GBS, or knows of anyone who has experienced this illness? I'm hoping that hearing some recovery stories may ease my worry...

Calamity
Member

10-18-2001

Wednesday, August 17, 2005 - 9:18 pm   Edit Post Move Post Delete Post View Post Send Calamity a private message Print Post    
Kep421: Aww, I'm so sorry your family has to go through this. I'll be praying Spidey is soon on the road to complete recovery.

I can't remember for sure but I think G-B was something they considered when my brother fell ill last year. He got better but the doctors have never been able to determine an exact diagnosis. I think he just went back for some follow-up testing.

I'll report back anything I can find/learn. In the meantime, take care and keep the faith. I know from personal experience that kids are amazingly resilient!

{{Kep}}

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 9:24 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
{{{Kep}}}, I am sorry to hear this--never heard of it myself, but anything with that long of a name makes me shudder. I will be sure to check for anything on my favorite site, Ivanhoe.com-- and I will post anything here that I find there or elsewhere. Keep us in the loop about your grandson's progress, please!

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 9:33 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported November 24, 2004


Risk of Guillain-Barre Syndrome
After flu Shot


(Ivanhoe Newswire) -- The number of reported cases of Guillain-Barre syndrome that occur following the flu vaccine has decreased over the past 12 years, according to a study in this week's issue of The Journal of the American Medical Association.

GBS is a rare paralytic disorder where the body's immune system affects part of the peripheral nervous system. Concerns about the risk of developing GBS following influenza vaccination have been present since an association was first noticed during the 1976-1977 season.

In the current study, Penina Haber, M.P.H., of the Centers for Disease Control and Prevention, and colleagues evaluated reports to the Vaccine Adverse Events Reporting System to search for trends of GBS following the flu vaccine in people over age 18 for each flu season from 1990 through 2003.

During this period, VAERS received 501 reports of GBS following vaccination. Researchers found rates of GBS had declined four-fold, from a high of 0.17 per 100,000 vaccinations in 1993-1994 to a low of .04 in 2002-2003.

Researchers also found that GBS reports to the VAERS had a different pattern of onset than non-GBS reports. The average GBS onset interval after vaccination was 13 days, whereas it was one day for non-GBS reports.

"The long onset interval and low prevalence of other pre-existing illnesses are consistent with a possible causal association between GBS and influenza vaccine. These findings require additional research, which can lead to a fuller understanding of the causes of GBS and its possible relationship with influenza vaccine," the authors write.


SOURCE: The Journal of the American Medical Association, 2004;292:2478-2481

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 9:39 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported September 23, 2003


Best Treatment for Paralyzing Disease


(Ivanhoe Newswire) -- Guillain-Barré syndrome (GBS) is a disease in which the body’s immune system attacks the nervous system. GBS is the most common cause of rapidly acquired paralysis in the United States. The disorder begins with a rapid onset of weakness and often paralysis of the legs, arms, face and breathing muscles. A new study provides doctors guidelines about which treatments are best for patients with GBS.

Study authors in London reviewed previous studies on the treatment of GBS. They examined all of the studies to determine which treatments were most effective for patients. With GBS, the body produces extra antibodies which become misdirected and attack and damage nerves. Treatments focus on killing or removing these antibodies.

Researchers say two treatments are equally beneficial for adults with severe GBS. These treatments include plasma exchange and intravenous immunoglobulin. Plasma exchange involves exchanging the patient’s plasma with a salt and protein solution before the blood is put back in the body. Intravenous immunoglobulin is a medication that helps the body find and destroy unfamiliar substances. The study shows steroid treatment is not an effective treatment for patients with GBS.

Researchers also report the importance of beginning treatment right after the first symptoms appear. Researchers say patients should have treatment within the first two to four weeks after diagnosis. Also, the study shows there is no benefit of combining the two effective treatments or performing one treatment after another. Furthermore, researchers say there are no adequate studies that have been done on children with this disease. However, they recommend the same treatment guidelines for children with GBS as adults with GBS.

As for future research, study authors feel more research on different combination treatments is needed. They also say there is a need to determine patients at greatest risk of an adverse outcome from treatment. Finally, they’d like to see research done on the best ways to manage the disease symptoms such as pain, fatigue and rehabilitation.


SOURCE: Neurology, 2003;61:736-740

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 9:54 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Arizona Daily Star
Date: Tucson, Arizona | Published, Wednesday, 08.17.2005
Site Address: AZ STAR

He's a real survivor


Benson High junior is active as ever after two life-threatening experiences
By Tyler Hansen
ARIZONA DAILY STAR

1

Photographer: Chris Richards / Arizona Daily Star
Tyler Westfall guards St. David's Oswaldo Sarabia. Westfall also plays baseball and is in Benson High's Rocket Club, an activity that almost cost him his life.

Tyler Westfall is a busy kid these days. Between all the school-related activities he juggles each day, scheduling time for a phone interview with the Benson High School junior is easier said than done.

Tuesday?

No chance.

"I play in the varsity (basketball) game at 7, but before that I'm a starter on the JV team, too," he said.

Wednesday? Not likely. "We've got practice at noon, then we take team pictures. And after that, I go to workout with the baseball team."

But Westfall always finds time for everything that is on his agenda. He even manages to squeeze in his duties as a member of the school's Rocket Club.

It is quite an achievement, especially considering that Westfall was terrifyingly close to death only three months ago.

"This story might not sound like a lot to parents of chronically ill children, but for parents of a healthy child, it was horrible," Westfall's mother, Susan, recalled last week.

Westfall became ill at the end of July while visiting his grandparents in Colorado and had to return home.

After days of incessant vomiting, he was admitted to Tucson Medical Center, where doctors told him he showed symptoms of having mononucleosis.

Within a week, the 16-year-old was a shadow of his former self. He became paralyzed and could not speak. He lost 30 pounds off his slender 6-foot frame, and all the vomiting caused bleeding in his esophagus.

Westfall, perhaps by an ounce of good fortune, remembers almost none of it.

"The virus attacked the cerebellum region of my brain, so I can't really remember anything about it," he says now. "People said I got depressed and went on antidepressants. It all hit me once I got back to normal.

"The doctor asked me, 'Do you realize how close you were to dying?' I had no idea."

The virus that attacked Westfall's peripheral nerves is called Guillain-Barré Syndrome, which occurs in about one out of every 10,000 cases of mono, according to Susan Westfall, a nurse at Benson Hospital.

The rarity of Westfall's sickness left many questions unanswered for his parents, who had seen their son, an accomplished student-athlete, become critically ill overnight without any previous medical problems.

"At the peak of the illness, he couldn't do anything - eat, walk, talk," Susan said. "He looked awful. We were sure that he could die."

Westfall spent two weeks in the hospital and nearly missed the entire first month of classes because of the condition. Once he returned to school in mid-September, doctors told him his prospering athletic career would be put on hold for the rest of the school year.

Basketball was out of the question: Benson coach Rusty Taylor was already preparing for the season with Westfall on his mind but not in his game plan. The first practice was barely more than a month away, and Westfall still needed help walking from his bedroom to the kitchen.

"We're talking about a kid who earlier in the summer looked like he was going to be our starting (power forward) this year. Then I went to see him in the hospital, and he was so sick he didn't even know I was there," Taylor said. "At that point, I sort of started planning to go on without him."

The rest of the story is nothing short of astounding. Westfall recovered so quickly from the illness that he was cleared to join the varsity practices Oct. 30. He regained all the weight he lost, plus five pounds, and he began working out with Brent Strom, minor-league pitching coordinator for the Montreal Expos.

In just one week of practice time with the varsity hoops team, Westfall again found himself battling for a starting job.

"Every time he stepped on the floor he got better," Taylor said. "He was already at about 90 percent of what he was early in the summer."

Then disaster struck again, this time 11 days before the season opener. While making rocket fuel for the Rocket Club, Westfall combined the wrong chemicals and the toxic mixture exploded in his face.

He suffered second-degree burns to his right wrist and hand - the hand he shoots and pitches with - and first-degree burns to his forehead.

"I was thinking, 'Ugh, not again. I must be cursed with bad luck,'" he said. "It could have been a lot worse, though."

As has come to be expected of the "wonder child," as his parents jokingly call him, Westfall did not miss a beat. A few days after the chemistry mishap he rejoined practice with a cast on his hand, and he played significant minutes and grabbed four rebounds in Benson's 114-50 victory over St. David in Tuesday's opener.

The teammates who maybe once thought of a season without Westfall are now in even better position to challenge for the 2A Desert Region South championship thanks to his perseverance.

"No one was very surprised he's come back so quickly," said Benson senior captain Mathew Ellsworth.

"He's the kind of guy who gets everyone else pumped up for a game because he's always going 110 percent, no matter what he's been through. It's pretty inspiring."

Even that might be too light a word to adequately describe Westfall's journey back to health and playing shape. He stared death in the face and did not flinch, leaving him with a promising future that almost never was.

"I feel like I'm pretty lucky to overcome all of this and still be able to do what I'm doing," Westfall said. "If you have bad luck for a while, it's eventually going to become good luck. I guess I was just able to tough it out."

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 10:00 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
All About GS
Site Address: Case History

Suzanne Goodwin, USA
Motor symptoms



I thought I was an unlikely target for any incapacitating illness. At 62 I was in excellent health, hiked and attended aerobic classes at an altitude of 7,000 feet, neither smoked nor drank, ate nutritiously, kept my weight under control and could still count the number of grey hairs I had. All my life I was the student and worker who rarely missed a day. My husband and I had enjoyed almost two years of retirement when the nightmare began.

For about two weeks I was fighting what I thought was a common cold (no intestinal symptoms) and had been able to serve on a jury for one week when GBS hit. In the early morning hours of February 12, 2001, I found I was unable to bring a tissue to my runny nose.

Losing control
I woke my husband and told him: "I am losing motor control." By the time he dressed and my son who lives nearby arrived, I needed help walking. On the way to the hospital I kept saying: "I'm losing my voice." In addition to all my other muscles, I guess the diaphragm was shutting down. Upon arrival at the hospital (10 minutes away), I couldn't walk at all.

Fortunately for me, the Emergency Room technician said: "I think I saw this condition a few years ago in a hospital in the south. It looks like Guillain-Barre syndrome. You'll get worse and then very soon be okay." Well, he was wrong about the "very soon" part.

Treatment began immediately
My super family doctor and his wonderful neurologist colleague arrived within the hour and I was on the ventilator the same day (and for more than 5 months). I had almost two courses of the IVIg treatment.

I was in Intensive Care for 103 days and then transferred to the Sub-Acute Unit of another hospital. I began speaking with a Passy Meer valve after five months of silence. The feeding tube remained until September 11 when I went to the Acute Rehabilitation Unit.

I was discharged on November 30, using a walker and leg braces and gave up both devices in a couple of months. I immediately began out-patient therapy and still go three times a week.

Post-GBS residual symptoms
I have very little use of my hands, even after surgery on both to free up joints at the palm. I can walk and do a funny little run but have a long way to go to be satisfied with my recovery.

I have had wonderful treatment and support from caring doctors, nurses, respiratory technicians and therapists. Most important to my recovery, however, have been my devoted husband, sons, daughter-in-law and sister who were variously at the bedside. They spelled with me, suctioned my trach, painted my fingernails, assisted with keeping me clean and in good spirits, and much, much more.

If you think others might benefit from hearing from me, please don't hesitate to relay my e-mail address. Many people have helped me understand this syndrome, especially others who have been there. I still find life beautiful.

Suzanne Goodwin
Encino CA, USA
05.2003

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 10:06 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
All About GS
Site Address: GBS Case History


Simon Ludgate, Canada
Chronic GBS, ITP and adult ADD


I found your site about Guillain-Barre very interesting and, after reading several case histories, decided to submit my own.

Patient: Simon Ludgate
Born: October 8, 1981
Location: Montreal, Quebec (Canada)
Treated at: Montreal Children's Hospital
Trigger: Meningitis vaccination in October of 1993
(just turned 12)
Diagnosed: December '93
Treated: February '94 to Summer '97

In October of 1993, my entire grade six class had their meningitis vaccinations. It wasn't until months later that it was traced as the trigger that started me on the rollercoaster of Chronic Guillain-Barre Syndrome.

The first signs showed up around Christmas time: I noticed my hands became harder to use. My already bad handwriting was deteriorating, but as a 12-year-old boy I had no idea why and was too afraid to tell anyone about it. I had a hard time using my hands for thing that required strength in fingertips, such as pulling on socks and doing up zippers. Things continued to get worse until my aunt, visiting in late December, had me squeeze her hand and noticed I was far weaker than I had any right to be.

I was rushed by my parents to the Montreal Children's Hospital ER, where I was first examined by a med. student, then by the head of Neurology. A few hours later the diagnosis of Guillain-Barre came through and I was admitted to the ICU. Tests were mostly external, however: I don't even remember if they took blood. I was released after five days on the belief that I was improving. Actually, I was just getting better at improving my results on the tests they administered.

After another month of slowly getting worse I returned to the hospital, this time to a normal ward, where I was observed, poked, prodded, and tested for a week. Tests included blood tests, Lumbar puncture, ECG, EMG (awful thing to do to a kid), and various physical tests. Reflexes were gone by this point. This was also the worst period of GBS I succumbed to, so here's what it was like after four months of slow-onset paralysis:

It was mostly a mobility issue; sensation, even in fingertips, was merely blurred and numb. However, I no longer had enough strength in my hands to pick up even a simple item like a spoon or turn a page in a book. Nor had I enough strength in my wrist to lift my hands: they hung limply from my arms. GBS affected only peripherals; I had no loss of strength or sensation in my abdomen, torso, neck, or head. I could walk, barely. I couldn't pick myself up if I fell down though.

After ten days of tests and observation, treatment was issued. I received a good dosage of IVIg (800ml, if memory serves). The next morning I woke up and the results of treatment were immediately apparent: my first act of rejoicing was having enough strength and mobility in my fingers to pick my nose! It was a minor bit of rejoicing, but felt like a miraculous recovery at the time.

Within a week all signs of GBS were gone, only weakness from atrophied muscles remained. Sensation was near fully restored, though reflexes never returned. Fine motor control was back, through I required months of physio- and ortho- therapy to fully regain control of my body.

The relapse was significantly faster. Within a week in May symptoms were rapidly returning and I was quickly getting weak. I returned to the hospital, was subjected to a second round of testing, and treated again with IVIg. Once again, I responded very quickly to the treatment, regaining strength and motor control within 12 hours.

The diagnosis changed from GBS to Chronic GBS, and I was put on a monthly schedule of outpatient treatments of IVIg. For the next two years I went to the MCH for a liter of IVIg, spending about five hours at the hospital during the infusion then returning home. My life was otherwise normal, though I avoided any intense physical activity as my reflexes had yet to return.

After two years the treatments were elongated: six weeks, then eight weeks, then the dosage cut in half. Finally, after over three years of infusions, the treatments were stopped. To this day, I've yet to relapse! I even got basic reflexes back by fall '99, which was my final visit with the head Neurologist who had followed my case and finally discharged me from the Children's Hospital (as I turned 18 that October).

I suppose by Chronic GBS I do mean CIDP, though I hadn't heard that term until I found your website. The doctors here in Canada always refered to it as GBS and Chronic GBS.

GBS isn't the only auto-immune disorder I've experienced. As a baby, just like every other in Canada, I was treated with a lengthy series of booster shots. These caused my body to develop ITP (Ideopathic Thrombocytopenia Purpura, the white blood cells destroying the platelets that cause blood to clot). Of course, at the time, it was believed I inherited the ITP from my father. The thought that it was caused from vaccinations just didn't seem to click back in the early eighties. It's only in hindsight that this appears to be the cause.

Either way, I'll never be vaccinated again to prevent another possible autoimmune reaction that could be far more serious. This is on the recommendation of numerous department heads at most of Montreal's top hospitals, so I won't be going against their advice unless it's a pretty critical immunization. It was one of the many subjects I discussed at length with as many doctors as I could in an attempt to form a well-rounded knowledge of the situation.

Now GBS is just a part of my history, there's nothing left in me to show that I once suffered an extremely slow onset paralysis.
I also have adult ADD, go figure, though it's unrelated to the auto-immune disorders
;-)

Simon Ludgate
12.2002

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 10:20 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
All About GS
Site Address:

Alex, USA - 13-year old
with suspected MF



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 12.2003
"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".

Jeffrey

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

Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 10:37 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
All About GBS
Site Address: Baby Case History

Lyndsi Graf, USA
GBS as a 20-month-old baby



My name is Pam Graf and our family lives in St. George, Utah. On November 22, 2002 my 20-month-old daughter was life-flighted to Primary Children’s Hospital in Salt Lake City, Utah. She had experienced a severe cold the previous week, followed by an ear infection.

Her symptoms began on the preceding Saturday. She had cried when trying to crawl up our steps and would scream in pain when we tried to change her diaper. By Sunday night she was very clingy and not sleeping well. As the week progressed she seemed that she was having pain in her lower back. The pediatrician’s office ran a urine sample to check for a kidney infection. We saw one of the P.A.’s at our doctor’s office and he said he thought she had “toxic hip” from her cold. He sent us to the hospital for blood tests and said he would call and check on her the next day. At that time she was still able to walk a few steps, but it obviously caused her severe pain. Each night her sleep had become more sporadic – by Wednesday night she wouldn’t sleep more than 1 ½ hours at a time. I put her in bed with me and she seemed like she was in too much pain to sleep.

The next day (Thursday) she laid perfectly still on the couch where I had put her; she had her hands in a fist up by her face and was unwilling to move her head other than keeping her face to her right. If I touched her at all she screamed in pain. My husband called and talked to a different P.A. He told us to bring her back immediately. He checked her reflexes; they were there, but faint. He had us admit her to the hospital.

The pediatrician had been out of town for the day and came over to the hospital to evaluate her that evening. When he saw her he knew right away what she had. They did a spinal tap and started an IV. When the results of the tap showed her elevated proteins they sent us to Children’s Hospital by life-flight.

They did an extensive MRI on her when we got there. It showed swelling of her nerves where they exited in her lower spine. The doctors did a lot of tests to rule out anything else. They placed her in ICU for 2 days.

During this time she was in so much nerve pain that she would not allow us to put clothes on her or even cover her with a blanket. If we covered her, even if she was asleep, she’d wake up and cry.

Lyndsi never did develop paralysis, which I think is what made them unsure of the GBI diagnosis. They wanted to do a nerve conduction test on her. I asked them if it would change their treatment plan – they said it wouldn’t, it would only verify their diagnosis. Because we had heard how painful the test is we refused to allow them to do it. On Monday they started the IGIV therapy for 2 days. That is when she began to make major improvements.

The medications they had her on were Tylenol, Naprosyn, and Neurontin. As long as we were never late for these she did pretty well, but for nearly a week she still had pain even with all the medication.

Unfortunately, a few days later she developed a severe blood infection. Her temperature spiked suddenly to 104 degrees and her heart rate was at 225. They started her on IV antibiotics, which we continued and extra week after we got home.

Other things we noticed with this were that her blood pressure was erratic, we went through several days of her heart monitor going off because her heart rate would drop when she slept, then we went for a few days where her respirations would drop when she slept. They never had to use a respirator, but there were several days she had times of “blow-by” air where they put the oxygen next to her and let it blow toward her face. That seemed to be enough to help.

We were in the hospital for 15 days. When we got home she was unable to do any physical skills other than to lie on her stomach on her elbows for short bouts and roll over in bed. She couldn’t sit, stand, crawl, etc. The doctor told us it would be weeks if not months before she would walk again, but 4 days later she was up and going!

It’s been 2 months today since we went to the hospital. I think she’s pretty much at 100%. She does tire a little more easily physically if she’s been playing hard, and occasionally we’ll have a day where she complains about “owies,” but those are becoming rarer.

The doctors are just amazed at how quickly she has recovered. I must tell you, there was an immense amount of prayer for this baby by many friends, relatives, and neighbors, and even complete strangers.
I feel somewhat guilty writing about how well she has done after reading so many other SAD stories of people suffering with this, and I realize how truly blessed and fortunate our family has been for some reason. I just hope that in sharing my story, maybe someone will find an answer or connection they’ve been looking for.

Pam Graf
01.2003

September 2003 Update:
I wanted to write and give you a brief update of my daughter, Lyndsi, whose case study you published on your website several months ago. In one month it will be a year since Lyndsi contracted GBS. As I read through your stories on your website I weep. We have been so very blessed and fortunate.

Lyndsi no longer has any physical symptoms…she finally stopped complaining of occasional “owies” about two or three months ago…I didn’t even realized they had stopped until someone asked me about it. The only thing I still see is that she tires easily and at 2 ½ years old she daily takes 2 or 3 hour naps…I can live with that!!!!!

Thank you so much for your website and all of the information available.

Sincerely,
Pam Graf
09.2004


February 2005:
Lyndsi seemed to have no symptoms for the first year after her return from the hospital and subsequent recovery, other than tiring easily and having very long naps.

However, almost a year to the day that we got home from the hospital, she lay down on the floor one day and cried and cried. She seemed to be exhibiting the same symptoms we had noticed with her original onset – pain in her legs and lower back. Nothing I did could soothe her or relieve her pain. This went on for about 2 hours (all the time my mind racing through the 101 questions of "what now?" "can we go through this again?" "should we go back to the doctor right now?" "I thought she was all better.")

I must admit, panic is a pretty fair description of my feelings at that moment! But then, 2 hours later, just as suddenly as it had started, it ended. She literally jumped up and started running around again.

I truly do not think she was faking it – after that incident she began having occasional pain in her toes. At first we thought she was having muscle cramps. We increased the amount of calcium she was taking, made sure her shoes fit well, did stretches, and anything else we could think of that would help. When I took her to the pediatrician for her 3-year-old checkup, I was telling him about this and she actually had an attack of this toe pain while he was still in the room. He worked with her leg during the pain and confirmed that it was NOT a cramp, but said that in some individuals who have had Guillian-Barre there is lingering pain in the feet and hands from the nerve damage. He feels confident that over time it will completely heal.

We can go for stretches of time (maybe a week or more) with no pain, and then we can have a number of days of nearly constant pain. She seems to be worse when she is getting a virus, like a cold. I have found that occasionally when things are especially bad, Motrin seems to help the symptoms.

There are a few other random things I notice, but I don’t know if they are related to GBS or not. However, I thought that I would include them in case others have noticed the same thing.

I have noticed that when she gets cold she does not easily warm back up. The main times I notice this are when she has a bath, and if she has something cold to eat, like a milkshake. I have wondered if this IS related to the GBS because in the hospital we had noticed that she had a lot of difficulty with regulation of her autonomic systems due to the GBS, such as blood pressure, heart rate, and body temperature. But what I find funny is that when she DOES get cold like this, her reaction is to become tremendously tired and she begs to go to sleep.

She still tires easily and will frequently nap 2-3 hours/day even though she will be turning 4 in March. I have been told that this should get better with time, also. When she IS awake, though, she is constant energy and motion. We took her on a family hiking trip last summer and were surprised how often she said that she needed to be carried, and we gave in to her requests because we weren’t sure if she was truly in pain, or just enjoyed the fact that her teenage brother and sister would give her free piggy-back rides! We still aren’t sure on that one.

We have seen some amazing improvements. At the time we finished her physical therapy she still had major flexibility issues, and I was concerned that she would never regain that. She also had lost all of her reflexes in her elbows and knees. I am happy to report that she has almost completely regained all reflexes, and she is incredibly flexible. We signed her up for a toddler gymnastics class, and you would never know that she had ever had a problem. She is the most limber child in the class and is full of energy and enthusiasm. She also is one of the strongest children in the class, which brings tears to my eyes when I see her now and yet remember that when we left the hospital she could barely even hold up her head by herself.

I think, though, that in sharing this story, it’s also important for parents of children who have experienced GBS to know of my personal emotional road through this. I find that even now, 2 years later, I feel that it is important for me to be able to share this story with others, especially when I see what great things she can do now – it’s kind of like "Hey, you need to understand how far she has come!" But if I spend too much time thinking or talking about our experiences, I still get pretty emotional. I can’t look at her and see the things she’s doing without thanking the Lord for her miracle and for having her in our life. I look back at all the growth I have experienced through these lessons and the compassion that I have gained. I think that just maybe I don’t take things for granted as much anymore. And on a funnier note, I find that around Christmas (since it happened over the holidays) I get really paranoid about being completely ready for Christmas early "just in case" something should happen in our life. I realize that this is totally irrational, but it’s just something that "came with the package" for me.

When we were at PCMC they gave me a journal and said that I should write down EVERYTHING. I did, and 60 pages and 15 days later I had a great record of what had happened; I am really grateful for this because so much of that time seems like a blur. Last Fall I decided to type that journal onto the computer and burn in onto a disk so that we would always have it. I was surprised how emotionally hard it was for me to type that, yet getting it finished helped me to have some closure with the experience and maybe feel like I could move on now.

I didn’t realize just how much of an impact this whole thing had had on my oldest daughter until last semester. She is a PDBio major at BYU and decided that for one of her research papers she would write about GBS. She figured it would be a "breeze" because we had done so much research and had first-hand accounts. But she didn’t get very far into her work before she realized that this was still too emotionally charged for her and she had to change her topic.

I’m just so grateful for the wonderful outcome we have had and truly feel that it is because of the faith and prayers of so many friends and even complete strangers. I realize that we are very fortunate with her quick recovery and subsequent good health. But experiencing GBS is something that will truly change your life forever, and it’s ok to struggle with your emotions and feelings. It’s been 2 years now and I’m not sure if I will ever get past the lump in my throat when I think about that experience. But I can think of so many worse things.

I hope that somehow my sharing our experiences can help others who feel lost, or alone, or who just want to understand. It’s really going to be ok.

Sincerely
Pam Graf
02.2005

Calamity
Member

10-18-2001

Wednesday, August 17, 2005 - 10:54 pm   Edit Post Move Post Delete Post View Post Send Calamity a private message Print Post    
Oh gosh, Herckleperckle, you've been busy! I'm sure Kep will appreciate all your hard work and thoughtfulness.



Herckleperckle
Member

11-20-2003

Wednesday, August 17, 2005 - 10:55 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Thanks, Calamity! I hope it helps. What an awful, scary thing to happen to anyone!

Kep421
Member

08-11-2001

Thursday, August 18, 2005 - 4:02 am   Edit Post Move Post Delete Post View Post Send Kep421 a private message Print Post    
OMG Herck - You are an absolute ANGEL!!angel

Thank you SO MUCH!!! This does help me, and I'm printing the stories out for my daughter (will take them to her this evening)...and confirms everything we are being told about GBS/MF.

I was with Spidey last night. The spinal tap was inconclusive (???), that is to say it didn't confirm GBS/MF, but it didn't rule it out either. The specialist are going off how Spidey is responding to the high doses of Immune Globulins they started giving him the day he was lifeflighted (Sunday? Monday? Feels like ages ago!!). Spidey is holding his own, and if he continues to improve, they will remove him from PICU (although he still cannot go home).

Spidey became sick Sunday (I think, the past days are all blurred into one nightmare)...complaining of blurred vision and dizzyness. My daughter thought he was coming down with a cold and put him down for a nap...when she encountered resistance trying to wake him for dinner...and he was non-responsive (Spidey NEVER misses a meal) she became scared an took him immediately to the local ER. The doctor's there where quick to examine him and flat out told her they had no idea what was wrong (they were thinking brain tumor)...and he was life flighted to a hospital about 40 miles away. By the time he got there, the side of his face was paralyzed and he had lost all reflexes.

The good news (I'm finding out now) is that Spidey was life flighted to a hospital that has the best Neuro departments in our state. These doctors were amazing. Spidey immediately had six specialist working to find out what was wrong...the catscan eliminated the tumor theory, but did discover a "mass" behind his eyes... the MRI showed the "mass" to be a bad sinus infection (Spidey has always suffered from allergies since he was a week old, poor thing). The MRI also showed a swelling in his brain, and the doctors went with a gut instinct that it was GBS and immediately moved him to PICU and started the IGIV....

It appears to be working...Although the symptoms haven't gone away, (he still has some double vision and some paralysis on his face and his reflexes have yet to return), the doctors are very optimistic because the paralysis doesn't appear to be spreading!!! Imagine my astonishment to find him playing Zelda on the hospital Nintendo system!!! If he continues to improve with the IG infusions, they said he can leave PICU, maybe even today.

Spidey will remain in the hospital until they are sure there is no danger of further paralysis, especially in the chest area. They said because they were able to start the IGIV so quickly after the symptoms started, and because Spidey is young, his recovery could very well be swift. We are very optimistic and being positive for a speedy recovery!!

Again, thank you SO MUCH HP...you have no idea how much comfort reading those cases gave me this morning...seriously. I'm supposed to be leaving for work in two minutes and I'm sitting here in my towel...crying from relief and happiness. You are my angel...

(Tess move over, make room for your new roomie in the Angel Dorm )angel2

Julieboo
Member

02-05-2002

Thursday, August 18, 2005 - 4:09 am   Edit Post Move Post Delete Post View Post Send Julieboo a private message Print Post    
(((Spidey)))

Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:11 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Oh, Kep, I am so happy that I was able to find these for you. In the same shoes, I'd have been just as panicked and worried. No angel here; I think the angels are the people who shared their personal stories. What testimonials for hope, especialy in children! I sure hope Spidey continues to improve, gets back to his original health and never has to look back. Hugs and love to you, his parents and to Spidey!

Lumbele
Member

07-12-2002

Thursday, August 18, 2005 - 1:10 pm   Edit Post Move Post Delete Post View Post Send Lumbele a private message Print Post    
(((Spidey, Kep and family))), you are all going through a very scary time. I'm sending positive vibes Spidey's way for a speedy recovery. Hang in there!