Dear Family & Friends,
It has been a real whirlwind as you know when our lives turned upside down on September 18, 2008 and our sweet LaRee was hospitalized. Since that time many have wanted an update as we know you are all worried and concerned. We decided to start this blog to communicate regular updates to everyone so we can all share information and unite in prayer, faith and our love with all of you and in behalf of Laree.
UPDATE:
LaRee was diagnosed with a rare disorder called Guillain-Barre Syndrome the morning of September 19. Surprisingly due to the rare occurrence of this Syndrome (1-2 out of every 100,000 / only 4,000 cases per year in the US), there is a lot of helpful information about this on the internet and some pretty good videos on You Tube which explain what this syndrome is. The main thing we can report is that it causes total-body paralysis rapidly. LaRee experienced her first signs of it (numbness in the hands and feet last Wednesday and was placed upon life support by Saturday) in it’s 2nd stage (because it has stages it is called a syndrome). LaRee has received a gamma globulin treatment for the last 5 days and now that course is over we are in a holding pattern—waiting to see if the treatment administered will take effect. The nurse advised us because LaRee’s condition is so acute, she may not show signs of improvement for some time (up to 7 days). We all need to be patient. The kind nurses also advised us last night that they are doing all they can to take care of LaRee and to ensure she does not develop any new or secondary problems. We were also told that in a few days they will have to perform a tracheotomy (the normal protocol) if LaRee is not breathing on her own. There was a rumor that Laree was in a drug-induced coma and this is not true at all – in fact now that the gamma treatment is over they have backed off the drug they were giving her that will likely cause her to forget the last 5 days of anything that happened which we feel is a good thing…now we need her to respond! Any reaction from her of an eye-blink or a toe curl will be cause to celebrate!
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LaRee is a vibrant and beautiful woman who is recovering from a severe case of Guillain-Barre Syndrome, a very rare and complicated auto immune disorder that leaves the body temporarily paralyzed. She resides with her darling daughter Chloe and her husband Pat.
LaRee Keenan
Blog Archive
LaRee’s Benevolent Fund Information
Deposits can be made at any Bank of America in the continental United States to the: LaRee Keenan Assistance Fund
Informative Links
Bed Number Ten
A patient's personal view of long term care. Seen through the eyes of a patient totally paralyzed with Guillain-Barré syndrome, this moving book takes you through the psychological and physical pain of an eleven month hospital stay. BED NUMBER TEN reads like a compelling novel, but is entirely factual. You will meet: The ICU staff who learned to communicate with the paralyzed woman - and those who did not bother. The physicians whose visits left her baffled about her own case. The staff and physicians who spoke to her and others who did not recognize her presence. The nurse who tucked Sue tightly under the covers, unaware that she was soaking with perspiration. The nurse who took the time to feed her drop by drop, as she slowly learned how to swallow again. The physical therapist who could read her eyes and spurred her on to move again as if the battle were his own. In these pages, which reveal the caring, the heroism, and the insensitivity sometimes found in the health care fields, you may even meet people you know.
1 comment:
LaRee,
We are thinking of you and pray for you daily.
Shawna has been struggling with a nerve/brain-related disorder (completely different than GBH) but with similar symptoms with nerve sheath health.
She has found a doctor who is treating her simply with injections of vitamin B-12 after the doctor found that Shawna's levels were 20% of normal - probably due to depletion from repeated pregnancies. Shawna is returning to the health that I have known her to be at since I first met her.
Please have your B-12 levels tested to verify that they are normal.
I do not claim to be a doctor, but often the key to recovery is right in front of us.
We are continuing to pray and fast for your recovery.
Love,
The Woods.
Vitamin B-12 And GBS
I doubt that many HSI members have been diagnosed with the relatively rare Guillain-Barre Syndrome (GBS) - a disorder of the central nervous system characterized by the destruction of the myelin sheaths that surround and protect the nerves.
But I know at least one member is coping with GBS. Her name is Kathy, and her questions about GBS prompted instructive answers from HSI Panelist Allan Spreen, M.D., who has some excellent information for all of us about supplementing with vitamin B-12.
In an e-mail, Kathy wrote: "I was diagnosed last Aug with Guillain-Barre Syndrome. I had never heard of it before and I really have no idea why I got it. I am still very tired and therefore the doctor did a blood test for B12 and found mine to be very low so he prescribed 1000 mg of B-12 per day. I found a timed released 1200 mg of B-12 and I am taking that with the hope it will help. I wondered if the low B-12 could be a cause or effect of the GBS?
"Another question is how can I get more B-12 in my diet? Can age make B-12 harder to get out of your diet? I am only 52 years old and I know from my hospice volunteering that many older people, men it seems, get B-12 shots so is this another problem with aging?"
In general, most of us absorb vitamins less effectively as we age. So B-12, like other nutrients, doesn't reach the system quite as well as it did when we were young pups. But according to Dr. Spreen, there are steps we can take to help B-12 do its best work. Here's Dr. Spreen's response to Kathy's questions:
"Guillian-Barre is a mystifying nerve problem. You're VERY lucky to have your B-12 level come back low (with the range of normal used today the level has to be ridiculously low to be picked up by the test as abnormal).
"I had many chances to recommend B-12 for shingles (for which it works well, since there are no 'cures' I was free to prescribe it without having to worry about not adhering to medical convention). However, I did not get an opportunity to try it for Guillain-Barre, which was too bad, because I think it should help (even with normal blood levels). B-12 works on the nerve sheath, which is irritated in GBS.
"The daily dose is fine, and could be continued for a long time (I'm sure it's 1000 mcg, though, and not mg). However, I'd suggest a few changes: first, forget time-release form. It's hard enough for the body to absorb without putting it in a pill designed NOT to release it. In fact, any oral form cannot be counted on. I'd suggest the sub-lingual route, meaning under-the-tongue.
"My other suggestion would be to use methyl-B-12, instead of cyano- or hydroxo-B-12. It's harder to find and more expensive, but worth every penny."
As for dietary sources, Dr. Spreen says that B-12 is only available in any reasonable amount in red meat, "no matter what the vegans say about legumes having enough."
To Your Good Health,
Jenny Thompson
Health Sciences Institute
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