April 16, 2009,
K.S. asks from West Bloomfield, MI on April 12, 2009
Guillian Barre Syndrome
Do you know anyone who has been diagnosed with this? What was the treatment? How long before he/she was "normal" again. My 8 year old niece was recently diagnosed with this. She has no reflex responses in her legs, pain in her leg muscles and is unable to walk correctly. She recenly had strep throat and pneumonia. She's been admitted to a hospital and is receiving IV ImmunoGlobulin.
So What Happened?™
Thank you, everyone who replied, for your well wishes and comments. It was reassuring to hear from those who have had the syndrome and are now fine. My niece is in a rehab facility receiving OT and PT and doing well. She'll be coming home this weekend and will continue with outpatient therapy.
T.Z. answers from Detroit on April 13, 2009
I just wanted to note that it is an immune response to foreign antigens, it can be a side effect to vaccines, but the diseases you are vaccinating agains could have produced the same immune response. It is the infection itself that has caused GBS.
I know with all of the anti-immunization rallys and such, some people may read this and chalk it up as another reason not to vaccinate. Please remember, the vaccinations are preventing terrible sicknesses, and if your child doesn't receive the vaccine to say, Polio, then his or her life will never be the same if they do get the disease.
1 mom found this helpful
D.M. answers from Detroit on April 14, 2009
Hi K.---My prayers are with your niece in hpes of a speedy recovery.
I must confess I have not had experience with this disease, but the first thought that came to my mind was, has your niece recently been given the HPV vaccine? I am taking classes to become a wellness educator, and the Naturopath who offers these classes gives us frequent messages on how some medical advice is not always the best course to follow. It is not always based on the best science available, and comes from companies that have a vested interest in what treatments a doctor prescribes. Dr. Popper has talked at length about how the HPV vaccine is dangerous, not having had enough long-term research to show that it is effective and causes no harm.
I just wanted to suggest this possibility so that her mom can seriously reconsider whether or not to continue with the series. IF your niece has recently had the HPV vaccine, and you would like more information on Dr. Popper's reports about this vaccine, feel free to contact me and any time.
Good luck! In health, D. ###-###-####
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D.S. answers from Grand Rapids on April 13, 2009
I had Gullian-Barre syndrome as a child...I was 11 years old. I too had been sick before with swollen glands and on an antibiotic before I was admitted in the hospital. It is a disease that attacks the nervous system. It basically paralyzes the body from the feet up...I was paralyzed to my nose...I ended up on a ventilator, had a feeding tube. From what I understand it just has to run it's course eventually leaving the body the opposite way it paralyzed it. The biggies are proper treatment...physical and occupational therapy, I think trying to keep me healthy was one issue(no pnuemonia) I had to learn to walk, feed myself all over again...I can happily say that I am 38 yrs. old now with four wonderful children and no side effects from the disease.
M.F. answers from Detroit on April 13, 2009
Sorry to hear about your niece. I know it can be scary when someone is diagnosed with Guillian Barre. My father had it about 15 years ago.
From what I know, the important thing about GB is that it be diagnosed and that you receive the IV treatments as soon as possible. The earlier it is diagnosed, the shorter the recovery. My dad was in the hospital about 10 days and it took about six months for him to be fully recovered-which the doctors told us was really good. Depending on how early the diagnoses is the hospitalization can last longer than ten days and the recovery can be longer as well.
The recovery actually happens in stages. The tricky thing for my Dad was that he is a very active person and he had to do a lot of resting in the early months after the hospitalization. I think that might also be hard for a child, though maybe they recover faster in general.
Good luck. I hope things go well.
A.S. answers from Detroit on April 16, 2009
Hi, K. S
I am so sorry to hear about your niece. The good thing is that she is young and has a much better chance of recovery. It is a very serious disease and in most cases the doctors cannot pinpoint how it was contracted. Also, doctors sometimes label a condition as Guillain Barre Syndrome because they can't diagnose it as anything else. There is a lot of information and support groups on the internet about it. Do a web search "Guillain Barre Syndrome" and set the page a favorite.
My father (born in 1930) was diagnosed with Guillain Barre Syndrome. At the hospital he was admitted to there was a young nurse who had contracted it some time before. She was doing fine.
My father was admitted to the hospital in February 2005. He went from walking and doing everything he wanted to do one week, the next week he had lost the ability to walk, use his arms and hands, couldn't breath without a respirator, could not talk or perform any bodily functions without assistance. He was one of those "men" afraid of doctors so it was no telling when the symptoms began. Unfortunately, my Dad never made it back home. He passed in February 2006.
Your niece is young, I am sure she is in good care. She will get her health back. Believe it! Receive it!
My mom and I are praying for your niece and her COMPLETE RECOVERY.
God Bless You,
L.N. answers from Detroit on April 14, 2009
recently asked my 9-yr-old's oncologist about immunoglobulin. she said it's only given to the kids who have repeated infections w/immune systems at nearly zero (i.e., white blood cell functions & their various "counts."). I do believe immunoglobulin is a blood product, so always be careful w/ infusing other's blood, et. al. into one's system.
On the less scary side, in reading other posts of mom's who had similar phenomenon which passed over time, perhaps so did i way way back in the day - at age 12, some 35 years ago, my dad realized I was walking funny and it turned out indeed my leg was inexplicably paralyzed from the knee down, couldn't bend my foot, had to lift my entire leg to clear the foot from tripping me. I didn't have pain though, just numbness and paralysis. I was prescribed keeping the calf warm by wearing highttop boots for 6 months, plus warm whirlpools (the kind which attached to a bathtub) to get the circulation going. By the time I finally got to see a neurologist One of 2 in Michigan at the time, i.e., 8 months after my dad recognized my problem, the neuro pronounced healed enough, just keep doing the warmth and circulation treatments. The only diagnosis that great brain of science had was, "she must have sat on her leg wrong while watching TV." !!!! Well, there was no cable then, and I don't subscribe now. What an idiot.
Morale of the story: parents must advocate like dogs for their kids in the context of using their common sense and doing their own research. And of course, pray like heaven. Never dismiss the wisdom of old-school peds, especially in the face of specialists and upstart newbies who tend to scare the heck out of you due to their microcosmic &/or inexperienced views.
Let the parents trust their guts!!!!
Re: the strep & pneumonia, they also ring a personal bell - at age 3 I had double pneumonia and the docs told y mom: "You can let her die in the hospital, or take her home to die."
"I'm taking her home!!!" my mom replied. And here I am 45 years later, writing you. I've also had numerous bouts w'strep throat throughout my life.
Still here I am writing you . . .
But it does point out that your niece has immune system challenges which she's probably undergoing currently, and has been for some too-long time. There are numerous approaches to take, outside of and perhaps in conjunction w/ docs' recommendations.
The lifesaver for me, and continuous helper for my little boy as he undergoes chemo hell, has been proven professional practitoners of Traditional Chinese Medicine (TCM), i.e.: acupuncture/pressure, herbs, etc. Little kids don't take much to get their bodies back on track. (I.e., half-dosing herbal medicines, acupresure massage if they can't take the slim needle points, well-body suggestions for practice if they're open to it, rather than it just creating another stress for them . . .)
And bottom line - you're Auntie, not parent. Don't beat yourself up over parental decisions over which you have no rightful or moral say. If they haven't asked your input, don't be surprised if they resent it.
Peace and prays for your Little One and her Family,
P.R. answers from Detroit on April 13, 2009
It's a side effect to our vaccines that pediatricians don't tell patients about.
The father of my SIL developed GB after a flu shot, and he was in the hospital for several months -- he is walking now, considered a full recovery, but he was paralyzed for a while.
They might google "Guillian Barre" + "hyperbaric oxygen" to see if anyone is treating GB w/ HBOT. I'm not sure on that one, but it might be something to consider and ask the docs about.
M.G. answers from Detroit on April 13, 2009
I had it when I was 25 years old...basically have to let it run its course. It started with my legs and worked its way up to my arms. It was very painful and within a matter of hours, I lost my ability to walk. I was in the hospital for a few weeks...got sicker before I got better. Then went through ~6 months of physical therapy, steroids, etc. I used a wheelchair, then a walker, then a cane. It was probably a year before I was back to my normal self, but really I could do most anything after 6 months...just got tired quickly. To this day, I still will feel pain in my legs if I over-do it. Be prepared for lots of support for this little girl! She may have youth on her side for a quicker recovery. It's very serious...Good luck. I will keep her in my prayers.