Monday, November 10, 2008

It's Been a Tough Month So Far

November has not exactly been Jenny’s favorite month. On Election Day, Jenny took a nasty tumble onto the floor during a transfer between her bed and wheelchair. She landed hard and broke her right shoulder. Her arm is in a sling, and doctors say we can expect the shoulder to heal in a few weeks. Meanwhile, every change of position is more difficult and uncomfortable for Jenny.

Saturday was even tougher. A mishap with her sip-and-puff breathing apparatus left Jenny in need of mouth-to-mouth resuscitation, which her dad performed successfully. Jenny had to go to the emergency room for a chest X-ray (which confirmed that she did not suffer any injury from the CPR efforts) and for observation to be sure that her breathing was back on track. After a few hours, she was allowed to return home.

Once again, though, Jenny showed her mettle. She promptly resumed watching the Olsen twins DVD (“When in Rome”) that had been in progress before her morning went awry, then devoured generous helpings of some of her favorite foods (stuffing and chocolate milk) while cracking jokes with the family and friends gathered around her. Now, Jenny is looking forward to Thanksgiving decorations for her room (she has requested an inflatable turkey!) and the release of the movie Twilight, based on one of her favorite Stephanie Meyer books.

Here’s hoping that the rest of November lives up to Jenny’s happiest expectations.

14 comments:

rosa said...

Hi Jenny! You are a very strong young lady your parents must be very proud of you. I hope doctors find the cure very soon so you could get well and start doing all the things you like the most.
Do you believe in miracles? Anything could hapen from yestarday to tomorrow! Am I making any sence?
I wish the best for you.
Love, Rosa Tejeda.

Lisa Roszler said...

My heart goes out to you and I will certainly add Jenny to my prayer list.

I'm a mom in search of answers for my own neurological condition, as of yet undiagnosed, and I can empathize with the frustration and uncertainty.

I am not a "comparable", but a fellow searcher trying to make sense of medical terminology and a bizarre collection of symptoms. I have an appointment at Duke University at the end of the month to speak with yet another specialist. I'm sure you're familiar with that scenario! It is my hope that I can arrive at a diagnosis. That seems to be the elusive Step One!

Again, your family is in my prayers. I will visit your blog often for updates.

Onward,
Lisa Roszler

Mahendra said...

Viktor Frankl was a prisoner in a Nazi concentration camp. In his experiences, he saw how the Nazis consistently tried to take away everything from him and his fellow prisoners. But he concluded that they could not take everything, because as he stated in his book, "Man's Search For Meaning":

"We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way."

You, Jenny, a "mere" child, with your attitude towards life, teach us adults that lesson everyday.

tendler5 said...

Dear Jenny and Jenny’s parents,

I happened upon your website and my heart just goes out to you-such a beautiful girl! I might have an insight into this tragedy that I thought I’d share, which may have a glimmer of hope. I have done much research on the effects of chemicals on our essential minerals, and have found a wealth of information relevant to many problems.

Two ingredients in the vaccine, which could hopefully be eliminated, might have caused this illness. These are Polysorbate 80 and the aluminum. As I’m sure you know, aluminum can cause paralysis if it crosses the blood brain barrier (as it does in ALS). The key to the problem may be that Polysorbate 80 damages the blood brain barrier. Also, your daughter’s various medical problems, especially the learning problems, clearly indicate that she has been low in zinc, manganese, and other minerals, since birth. Zinc maintains the blood-brain barrier and both zinc and manganese protect the brain from damage by acting as antioxidants. Zinc is also essential to rid the body of heavy metals. There is also a common problem of fetal exposure to iron from the all-too common high iron prenatal vitamin pills, which cause iron metabolism problems. Exposure to one of very long list of common fetal exposures such as estrogenic pesticides or oral contraceptives also damages the blood brain barrier and causes learning disabilities.

Prednisone increases urinary loss of zinc, as well as manganese and other nutrients, so this might have aggravated the situation if Jenny is not taking a basic daily nutrition supplement.

There is a very similar “disease” formerly called Hallervorden-Spatz disease-at least they used to think it was a disease but now are looking into brain metal poisoning as the cause. This and similar disorders can be treated to some extent by replenishing the essential minerals, such as manganese, zinc and magnesium (manganese, B-6 and some other nutrients also act as brain iron chelators). High doses may be required, so a full mineral work-up should be done by a very competent practitioner.

I truly hope you look into this-I have much information on metals and solvents and their effects on health, so feel free to contact me.

Blessings to you all,
Joan Tendler, MArch

K Fuller said...

We have your picture of Jenny on our *Thought Board* and think of her a say a prayer daily.
Bless you all.

Jennifer said...

Hi Jenny, I used to take a class with your dad. I'm so impressed with your spirit and gumption. I noticed that you too like the Twilight vampire series. Well, I can tell you that us 30-something women like it too - I've probably read each book four times (yes, when I should have been studying!). My friends and I have a particularly favorite fan website, have you seen it? - http://www.edwardandbella.net/#jukebox

They keep putting up new pics and stuff in anticipation of the movie.

Take care, and you and your family remain in my prayers.

Jen Rice

Jennifer said...

Hi Jenny!

My name is Jen Rice, and I used to take a class with your dad. I'm so impressed with your fortitude. You and your familiy are in my prayers.

I see you like the Twilight vampire series. I too fell in love with the books and probably read them four times when I should have been studying instead! Turns out that us 30-something women like them just as much as you younger women. Ah well, who could help themselves? Do you ever go to the website: http://www.edwardandbella.net/#jukebox

They keep putting up new stuff in anticipation of the movie.

Take care! Jen Rice

Mario said...

Could it be that she has Gillian-Bare Syndrome? I think I got it after getting the Flu shot.

Sheila Sultani said...

I forwarded this link to the Childrens Hospital of The Kings Daughters in Norfolk, VA - I hope someone who can help will see it.

dan campbell said...

I KNOW A DR THAT CAN HELP HER? MY GOD CALL ME MY SON HAS ALS DAN CAMPBELL 702 428 3219

mymel50 said...

I can empathize with you and your parents. My heart goes out to you and I keep you in my prayers.

I came to read your blog because of my daughter who received her third shot of the hpv vaccine a few days before her 14th birthday. Three months after that she missed her monthly period for more than two months now. It has never happened to her before and she gets upset and anxious what is going on with her body. I am beginning to think that the Hpv vaccine might have caused this.Please anyone who have experienced similar reaction post your comment.

Thank you, Mymel

tendler5 said...

Hi Myme,

I have been researching the interactions of minerals with toxins like heavy metals for my family and acquaintances with many great results. If you don’t mind a lot of info, I think I can help your daughter (you also may know all of this already and are taking minerals, in that case I just wish you all the best).

From my understanding, the aluminum in the vaccine could have had the effect of disrupting your daughter’s menstrual period because aluminum affects the reproductive system and can act as an “endocrine disruptor”, which may be what is going on. This effect would be due, at least in part, to aluminum’s depletion of minerals like zinc and manganese that are required for the production of sex hormones.

A full supply of minerals normally protects us from the effects of heavy metals and other toxins, but they are generally low due to diet and many toxins in our food and in our environment. Heavy metals deplete many minerals, causing a host of problems. For example, adequate levels of minerals normally prevent initial absorption of these metals, plus zinc and selenium remove metals that do get in. Minerals even protect against heavy metal oxidative damage. Minerals are also needed for vitamin absorption and availability. Since teens are generally low in minerals from a combination of increased need at puberty (especially for zinc) and a less than optimal diet, they are particularly vulnerable to all heavy metals.

So, your teen’s menstrual problems could have been caused mainly, or just in part, by the vaccine, or she could simply be very low in minerals from other metals, other toxins, or from poor diet. No matter what the source, her condition would probably be greatly improved by taking mineral supplements, for low levels of minerals like zinc and manganese lead to lost menstrual periods, and the restoration of these minerals should eventually restore her period. Your teen should also eliminate, as best she can, refined and processed foods and any chemicals, because all of these deplete minerals. This includes oral contraceptives, for they deplete zinc and most other minerals and vitamins, plus they increase toxic copper and iron, all of which increases heavy metal absorption.

I recommend these supplements to everyone, and I take them as well:
-zinc: not picolinate because that increases lead absorption
-manganese: major brain antioxidant, plus puts iron in the blood- iron is essential to detoxify the body but often iron is present in toxic storage rather than in the blood (looking like anemia) as a result of a shortage of manganese and/or bioavailable copper-iron supplements seem to work at first but they ultimately worsen the situation
-calcium citrate: balances magnesium and protects against metals
-magnesium: as Natural Calm for best absorption
-selenium
-boron: increases availability of vitamin D
-chromium: not picolinate because picolinic acid might generate free radicals -essential to balance zinc as it deals with the common problem (especially among females) of toxic built-up copper, making copper available for its critical role as an antioxidant and iron transporter.
If your daughter had menstrual cramps, don’t take calcium at first, but add it after a few months or so in order to build up magnesium.

All mineral supplements are best taken separately, about 2 hours apart (they compete with each other for absorption, with manganese and zinc being absorbed after most of the others, in other words, NOT absorbed in multi-mineral pills). In addition, one tablespoon of cod liver oil (lemon flavored or in gel capsules) gives 100 percent vitamin D and omega 3’s, both essential for mineral absorption (if you get a lot of sun during summer only omega 3’s should be taken at that time). Zinc also activates these nutrients, so zinc is particularly important.

This may seem like a lot, but just taking one or a few minerals will quickly result in a mineral imbalance, so it’s important to take them all, at least until things get back to normal. Patience is needed; this may take many months, maybe more than a year if her minerals are very low (see study below). In the meantime, though, her energy level will receive a major boost! Later, you might rely more on foods (although we all have many toxins stored in our bodies, so I think these minerals are a necessary protection at all times).

There are many mineral “super foods” like pumpkin seeds and sesame seeds (tahini), nuts, legumes, whole grains-especially quinoa and amaranth. These foods should be soaked a long time before cooking or toasting to lower the phytic acid, which binds minerals, but don’t throw away the mineral-rich soaking water. Greens, kelp and brewer’s yeast are also high in many minerals. Super antioxidant foods like goji berries and cranberries would also be helpful to your daughter to prevent cell damage.

I think you’ll have good results with this program-and lots of other typical teen problems like acne, impulsiveness, and emotional ups and downs will also be helped.
This article about anorexia-induced amenorrhea, also common these days, may help. Anorexics are very low in minerals, so the same program of supplementation would apply, and it would also restore a more healthful appetite:
Amenorrhea Twenty females between the ages of 14 and 26 took 45-90 mg of zinc sulfate per day. Over a period of 8-56 months, 17 patients had weight gains of over 15%. In 13 subjects, menstruation resumed 1-17 months after beginning zinc therapy; an excellent sign, since loss of menstruation (amenorrhea) is a symptom of advanced anorexia. The American Zinc Association noted that zinc is essential for proper brain development and function. According to the press release, zinc controls brain receptors processing information about taste and smell. The release also cites a Journal For Medical Research article by Dr. Alex Schauss, which reported studies at Stanford University, the University of Kentucky, and the University of California at Davis which found most anorexics and bulimics were zinc-deficient. According to the release, a 5-year study showed an 85% remission rate for anorexia patients given zinc supplements. http://www.suite101.com/article.cfm/anorexia/25182
Please post any comments, especially progress from this program.
All the best,
Joan Tendler

Kerrie said...

Hey Jenny
I hope you are feeling better. This is a g'day message from Australia. I read your story with interest, you are what we would call a "battler". Keep it up girlfriend.
Kerrie

Ajayi from Windy said...

Hey Jenny!
I haven't talked to you in a while since eighth grade graduation but, I heard it's your birthday soon and I just wanted to wish you a happy birthday! I miss hanging out with you at lunch and hearing your amazing laugh. I hope you get better VERY soon because we need to have a day where you and I can go to Emeryville and I can hear that awesome laugh again, okay? Have a very happy birthday!

Love, Ajayi from Windy :)