Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Boy diagnosed with Guillain-Barre syndrome, but CDC says no clear link

Posted by on Nov. 12, 2009 at 1:46 AM
  • 43 Replies
By JoNel Aleccia
Health writer
msnbc.com
updated 5:45 p.m. ET, Wed., Nov . 11, 2009





A 14-year-old Virginia boy is weak and struggling to walk after coming down with a reported case of Guillain-Barre syndrome within hours after receiving the H1N1 vaccine for swine flu.

Jordan McFarland, a high school athlete from Alexandria, Va., left Inova Fairfax Hospital for Children Tuesday night in a wheelchair nearly a week after developing severe headaches, muscle spasms and weakness in his legs following a swine flu shot. He will likely need the assistance of a walker for four to six weeks, plus extensive physical therapy.

“The doctor said I’ll recover fully, but it’s going to take some time,” the teenager said.

Jordan is among the first people in the nation to report developing the potentially life-threatening muscle disorder after receiving the H1N1 vaccine this fall. His alarming reaction was submitted via msnbc.com's reader reporting tool, First Person, by his stepmother, Arlene Connin.

Increased cases of GBS were found in patients who received a 1976 swine flu vaccine, but government health officials say they've seen no rise in the condition associated with the current outbreak.

So far, the federal Centers for Disease Control and Prevention have received five reports of GBS in people who received the H1N1 vaccine since Oct. 6, not including Jordan’s case, said Dr. Claudia J. Vellozzi, deputy director for immunization safety.

Out of about 40 million doses of H1N1 vaccine available to date, that’s a far lower rate of GBS than the 1 case that develops in every 1 million people who receive the regular flu vaccine.

"It's much less than we'd expect," she said, adding that many cases go unreported.

In 1976, about 1 additional case of GBS developed in every 100,000 people who were vaccinated against the swine flu, according to the CDC.

Jordan's parents said doctors diagnosed the teen with GBS, a rare muscle disorder that develops when a person’s own immune system attacks the nerves, causing muscle weakness, difficulty walking and sometimes paralysis and death.

Hospital officials didn't dispute that the boy had GBS, but refused to comment on the boy's condition or treatment, even after his family granted permission.

“They don’t want to create a fear or panic in the community,” said Jordan's stepmother, Connin.

Connin and Jordan’s father, Calvin McFarland, both 38, believe the shot sparked the illness that came on 18 hours after the boy’s vaccination.

No clear link
But Vellozzi said there’s no clear link between the new vaccine and the disease.

“We know that GBS and other illnesses occur routinely in the U.S.,” Vellozzi said, noting that 80 to 120 cases are diagnosed each week in the general population.

“There are events that follow vaccination. That’s what they are, they happened to follow vaccination.

GBS is among the most severe adverse events being tracked with updated systems developed by the CDC, the Food and Drug Administration and the American Association of Neurology in order to monitor the rollout of the H1N1 flu vaccine.

So far, CDC officials have received about 1,700 reports of adverse events linked to the new shot, Vellozzi said. Of those, only about 4 percent, or 68, were coded as serious. That’s on par with reports regarding seasonal vaccine.

While any harmful side effect can be devastating for an individual, when it comes to larger public health issues, the H1N1 virus is considerably riskier than the vaccine, experts say.

“The H1N1 illness is making lots of children very ill," Vellozzi said. "There’s lots of illness and lots of death."

So far, more than 4,000 people have died from H1N1 infection in the U.S., according to latest estimates by the CDC.

Since the start of the H1N1 vaccine campaign, the CDC has repeatedly warned that certain conditions, such as miscarriage, heart attack and even GBS occur regardless of immunization, and officials have urged the public not to blame the vaccine for the illnesses, but to report promptly any suspected side effects.

As of early Wednesday, CDC officials said they had received no report from Inova Fairfax about Jordan's condition. Later in the day, however, hospital spokesman Tony Raker indicated the hospital had submitted the report.

After hearing about Jordan's case from msnbc.com, CDC officials advised the family to report Jordan's case themselves.

Vaccine critic Barbara Lowe Fisher, president of the National Vaccine Information Center in Vienna, Va., said assuming all potential side effects are coincidence is a mistake. Such an attitude is likely to prevent doctors and other health workers from reporting adverse events in a timely manner, obscuring a true picture of any problems.

Fisher said only between 1 percent and 10 percent of adverse events are reported to the government's Vaccine Adverse Event Reporting System, which was set up to track problems with vaccines. A 1986 law requires reporting of certain adverse events to VAERS, but there are no sanctions for not reporting, Fisher noted. CDC officials said general reporting to VAERS is voluntary.

Fisher said she suspects that many more cases of GBS have occurred in the wake of the H1N1 vaccines.

"We basically have people blowing it off," she said. "We need to make sure people are reporting."

Eager for protection
Like many parents across the country, Arlene Connin said she was eager to protect Jordan and his brother, Lleyton, 7, against the flu. When she took the boys to their pediatrician for seasonal flu shots on Nov. 5, the provider said H1N1 vaccine was available, too.

There was “not even a thought,” that either boy would have a reaction, Connin said. Within hours, however, Jordan developed severe headaches, chills and back spasms. The family rushed him to the closest hospital, Dewitt Army Community Hospital, where doctors conducted neurological exams, a CT scan and an EKG test.

The small hospital didn’t have the facilities to diagnose or treat Jordan’s illness, so he was transferred by ambulance on Nov. 6 to Inova Fairfax Hospital in Falls Church, Va., a spokesman said. Doctors there quickly gave Jordan intravenous immunoglobulin, a standard treatment for GBS, Connin said.

“GBS, that’s the diagnosis they gave us and that’s how they were treating him,” Connin said.

A hospital spokesman, Tony Raker, declined further comment on Jordan's case. When an msnbc.com photographer asked to view Jordan's chart, even with his father's permission, hospital officials refused.

Doctors are reluctant to discuss GBS in connection with vaccines, Connin said. Anti-vaccine groups frequently cite the disorder as evidence of vaccine dangers, which public health officials fear will discourage people from getting life-saving protection, especially in the case of H1N1. 

Jordan’s experience has made his parents think hard about immunization, even though they’ve always insisted on annual flu shots. Under CDC guidelines for children 9 and younger, Lleyton should receive another booster shot of H1N1 vaccine to protect him fully against the virus.

“I have mixed emotions on that one,” Calvin McFarland, the boys’ father, said. “We’re not sure what we’re going to do about that.”

© 2009 msnbc.com Reprints

Since the CDC is saying no clear link like they seem to be saying with everything do you think they will hide the fact of people coming down with this?
by on Nov. 12, 2009 at 1:46 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
tericared
by on Nov. 12, 2009 at 1:58 AM

 Jordan’s experience has made his parents think hard about immunization, even though they’ve always insisted on annual flu shots. Under CDC guidelines for children 9 and younger, Lleyton should receive another booster shot of H1N1 vaccine to protect him fully against the virus.

“I have mixed emotions on that one,” Calvin McFarland, the boys’ father, said. “We’re not sure what we’re going to do about that.”

I'm sorry but is this Dad serious?   After his son has a reaction he isnt sure about whether or not to get the booster for the younger brother?

stormcris
by Christy on Nov. 12, 2009 at 2:05 AM

I think this is the serious issue with the CDC denial of events cause and effect. Some people believe everything the CDC puts out and forget to think logically and use their best instincts. I was watching a program or reading something the other day about how part of the issue today with human beings is they have lost the ability to use their own instincts. I guess that is because nowadays if you say you are not doing something do to instinct people berate you. If I were them I would trust my instinct, but then I have proof that it works when doctors fail.

Quoting tericared:

 Jordan’s experience has made his parents think hard about immunization, even though they’ve always insisted on annual flu shots. Under CDC guidelines for children 9 and younger, Lleyton should receive another booster shot of H1N1 vaccine to protect him fully against the virus.

“I have mixed emotions on that one,” Calvin McFarland, the boys’ father, said. “We’re not sure what we’re going to do about that.”

I'm sorry but is this Dad serious?   After his son has a reaction he isnt sure about whether or not to get the booster for the younger brother?


Merry74
by on Nov. 12, 2009 at 2:57 AM

Not just denial either: reporting is voluntary and sometimes (though it doesn't appear to be the case here) the child gets more than one shot and the doctors are unsure which shot caused the adverse effect. 

My concern is the Immunization Safety MD thought the GBS percentage would be higher?  Is she admitting the higher risk?

Quoting stormcris:

I think this is the serious issue with the CDC denial of events cause and effect. Some people believe everything the CDC puts out and forget to think logically and use their best instincts. I was watching a program or reading something the other day about how part of the issue today with human beings is they have lost the ability to use their own instincts. I guess that is because nowadays if you say you are not doing something do to instinct people berate you. If I were them I would trust my instinct, but then I have proof that it works when doctors fail.

Quoting tericared:

 Jordan’s experience has made his parents think hard about immunization, even though they’ve always insisted on annual flu shots. Under CDC guidelines for children 9 and younger, Lleyton should receive another booster shot of H1N1 vaccine to protect him fully against the virus.

“I have mixed emotions on that one,” Calvin McFarland, the boys’ father, said. “We’re not sure what we’re going to do about that.”

I'm sorry but is this Dad serious?   After his son has a reaction he isnt sure about whether or not to get the booster for the younger brother?



stormcris
by Christy on Nov. 12, 2009 at 3:01 AM

Actually everyone thought the risk was higher for this vaccine due to what happened last time they made a vaccine for swine flu. GBS is the number one symptom they are looking for as they sent out letters to doctors to be on the lookout for the onset of GBS in relation to this shot.

Quoting Merry74:

Not just denial either: reporting is voluntary and sometimes (though it doesn't appear to be the case here) the child gets more than one shot and the doctors are unsure which shot caused the adverse effect. 

My concern is the Immunization Safety MD thought the GBS percentage would be higher?  Is she admitting the higher risk?


IraqiVetWife
by Member on Nov. 12, 2009 at 6:29 AM

I think people forget that when they are giving children vaccines that they are giving them the virus.

I dont know how many times my little boys friends have gotten sick since receiving their shots(lots for sure), my little boy is all organic and has yet to become sick after 2 years.

Think about it, why do you catch something? Cause you become exposed!

What is a vaccine doing? Exposing you.




Emma Weekly

Successpreneur Marketer

Http://www.YouAreACeo.com/Success4Me


"Consult not your fears but your hopes and your dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but with what it is still possible for you to do."

Pope John XXIII      

Merry74
by on Nov. 12, 2009 at 7:30 AM

Off topic but... you quote John XXIII!  Awesome!

Quoting IraqiVetWife:

I think people forget that when they are giving children vaccines that they are giving them the virus.

I dont know how many times my little boys friends have gotten sick since receiving their shots(lots for sure), my little boy is all organic and has yet to become sick after 2 years.

Think about it, why do you catch something? Cause you become exposed!

What is a vaccine doing? Exposing you.





Merry74
by on Nov. 12, 2009 at 7:31 AM

And isn't the onset period for GBS something like 6 weeks?  Is it also possible that the adverse affects are happening after the doctors stop making the association?

Quoting stormcris:

Actually everyone thought the risk was higher for this vaccine due to what happened last time they made a vaccine for swine flu. GBS is the number one symptom they are looking for as they sent out letters to doctors to be on the lookout for the onset of GBS in relation to this shot.

Quoting Merry74:

Not just denial either: reporting is voluntary and sometimes (though it doesn't appear to be the case here) the child gets more than one shot and the doctors are unsure which shot caused the adverse effect. 

My concern is the Immunization Safety MD thought the GBS percentage would be higher?  Is she admitting the higher risk?



stormcris
by Christy on Nov. 12, 2009 at 7:37 AM

Highly possible. It is supposed to onset within 6 weeks.

Quoting Merry74:

And isn't the onset period for GBS something like 6 weeks?  Is it also possible that the adverse affects are happening after the doctors stop making the association?

Quoting stormcris:

Actually everyone thought the risk was higher for this vaccine due to what happened last time they made a vaccine for swine flu. GBS is the number one symptom they are looking for as they sent out letters to doctors to be on the lookout for the onset of GBS in relation to this shot.

Quoting Merry74:

Not just denial either: reporting is voluntary and sometimes (though it doesn't appear to be the case here) the child gets more than one shot and the doctors are unsure which shot caused the adverse effect. 

My concern is the Immunization Safety MD thought the GBS percentage would be higher?  Is she admitting the higher risk?




MissBearNMonkey
by on Nov. 12, 2009 at 7:44 AM

I got the swine flu vax on 10/29 and I've noticed several things that could be attributed to several causes:

1. I've had serious outbreaks of cold sores (caused by a latent virus--herpes-- that appears during times of immunosuppression-aka when your body is busy fighting off something else). Now I'm pregnant so I'm already already immuno-compromised. My dr. wouldn't think twice about blaming it on my preganancy rather than the vax, ignoring the fact these out breaks have been severe and have not responded to various (not just one) treatments I've tried over the years (when I get the occasional blister).

2. My MS has been really bad for the past couple of weeks (lots of spasms, spasticity and pain). For the first time in a LONG time, I am considering calling my neurologist. I don't call him often because I have a great doctor who works with me on the day to day stuff and knows my history. Anyway, calling the neuro ALWAYS results in a three-day round of IV steroids.   

I will say out of experience that a pregnant woman being pumped with steroids in her second trimester is a public safety hazard, much like...oh...a rapid ape. I'm not there yet, but if my symptoms keep getting worse, I'll have to call Dr. Smith and then may God be with us all.

Obviously, there is something going on here with my immune system. I'm willing to bet it is a combination of several things, including the vax. My oldest dd was sick with suspected H1H1 at the same time and, since the vax isn't fully effective, I actually had H1N1 and the two problems I noted above could of been attributed to that.

It sounds like the poor kid in the article could have been in a similar position. I have family down there who were sick during late sept and early oct (when the boy would have been vaxed). He could have already been pre-disposed to GBS and when he got it with H1N1 he became symptomatic.

HERE'S WHERE THE VAX COMES IN. If he (and I) got vaxed at the same time we were exposed to H1N1, our bodies would have been doubly hit by a new virus that would have put our immune systems into overdrive. GBS and MS are both autoimmune diseases where our bodies' immune systems attack and cause inflammation in various parts of our nervous systems causing some seriously scary symptoms if you don't know WTF is going on. Now that I know that my right arm numbness and weakness is a part of the MS, I can ignore it and compensate for it nearly all the time even when I get a cold or my allergies act up. One of the "silver linings" of having a hyperactive immune system is that I don't get really sick very often. At most a runny nose or a sore throat, but only for 24 hours or so. Because I got the vax, I think rather than protect me it just exacerbated a flu I already had. Instead of having typical flu systems my immune system went into hyper hyper hyper drive and just attacked EVERYTHING it deemed a threat, including my brain.

I have noticed, now that I've gotten out of the ten day flu range, that I am feeling better. Maybe it was the vax? Maybe is was H1N1? I personally think it was both. I also feel like it was fairly mild and fully recoverable and I'm relieved we made it through it just fine.

stormcris
by Christy on Nov. 12, 2009 at 8:05 AM

Wow that sucks. Many people's MS goes into remission while they are pregnant.

Quoting MissBearNMonkey:

I got the swine flu vax on 10/29 and I've noticed several things that could be attributed to several causes:

1. I've had serious outbreaks of cold sores (caused by a latent virus--herpes-- that appears during times of immunosuppression-aka when your body is busy fighting off something else). Now I'm pregnant so I'm already already immuno-compromised. My dr. wouldn't think twice about blaming it on my preganancy rather than the vax, ignoring the fact these out breaks have been severe and have not responded to various (not just one) treatments I've tried over the years (when I get the occasional blister).

2. My MS has been really bad for the past couple of weeks (lots of spasms, spasticity and pain). For the first time in a LONG time, I am considering calling my neurologist. I don't call him often because I have a great doctor who works with me on the day to day stuff and knows my history. Anyway, calling the neuro ALWAYS results in a three-day round of IV steroids.   

I will say out of experience that a pregnant woman being pumped with steroids in her second trimester is a public safety hazard, much like...oh...a rapid ape. I'm not there yet, but if my symptoms keep getting worse, I'll have to call Dr. Smith and then may God be with us all.

Obviously, there is something going on here with my immune system. I'm willing to bet it is a combination of several things, including the vax. My oldest dd was sick with suspected H1H1 at the same time and, since the vax isn't fully effective, I actually had H1N1 and the two problems I noted above could of been attributed to that.

It sounds like the poor kid in the article could have been in a similar position. I have family down there who were sick during late sept and early oct (when the boy would have been vaxed). He could have already been pre-disposed to GBS and when he got it with H1N1 he became symptomatic.

HERE'S WHERE THE VAX COMES IN. If he (and I) got vaxed at the same time we were exposed to H1N1, our bodies would have been doubly hit by a new virus that would have put our immune systems into overdrive. GBS and MS are both autoimmune diseases where our bodies' immune systems attack and cause inflammation in various parts of our nervous systems causing some seriously scary symptoms if you don't know WTF is going on. Now that I know that my right arm numbness and weakness is a part of the MS, I can ignore it and compensate for it nearly all the time even when I get a cold or my allergies act up. One of the "silver linings" of having a hyperactive immune system is that I don't get really sick very often. At most a runny nose or a sore throat, but only for 24 hours or so. Because I got the vax, I think rather than protect me it just exacerbated a flu I already had. Instead of having typical flu systems my immune system went into hyper hyper hyper drive and just attacked EVERYTHING it deemed a threat, including my brain.

I have noticed, now that I've gotten out of the ten day flu range, that I am feeling better. Maybe it was the vax? Maybe is was H1N1? I personally think it was both. I also feel like it was fairly mild and fully recoverable and I'm relieved we made it through it just fine.


Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)