Wednesday, August 13, 2008

Sisterhood in Multiple Guises

Jenny continues to have good and bad days. Yesterday, she went to see “The Sisterhood of the Traveling Pants 2” to celebrate a day with lower than normal nausea. On Monday, one of her doctors said Jenny seemed to have stabilized, to which her dad responded that, at this rate of reduced deterioration, Jenny may live to be 100!

So, let’s all keep hope. Jenny’s doctors are trying a number of experimental medications (e.g., hydroxyurea, which is in clinical trials) and have ordered further tests to see if they can nail down Jenny’s ailment (including a pet scan today, which led an amused Jenny to remark: “I guess I am officially a pet now!”). They are not giving up the fight, and neither is she.

Ever since Jenny’s blog started, highlighting the need for comparables, the response has been exponential. Our first clear comparable was Alex, who will turn 15 on August 22nd and whose story we talked of last time.

Over the past 6 weeks, we have found several more close comparables from all around the world, most of whom have been diagnosed as having a rare, rapidly progressing form of juvenile ALS (aka “Lou Gehrig’s disease”). Some, like Haley, are still hoping for a cure. Haley’s story is similar to that of Alex and Jenny. Her first symptoms started at the age of 16 (fall 2007), and by May of this year, Haley was wheelchair bound.

Other families are dealing with the fact that their daughters did not survive to see a cure: Emily (onset age 12: died 18 months later with her autopsy showing upper and lower motor neuron degeneration, consistent with ALS), Janine (onset spring 2000; died December 2001), Tanya (diagnosed at 18 in Feb 2002; died 5 months later on July 11, 2002) and Sarah Beth (diagnosed summer 2007; died April 10, 2008 at age 22). Our hearts go out to these families, as well as our thanks for being so generous in sharing information about their daughters’ experiences with this deadly disease.

Clearly, there are more children out there who have suffered from, or are suffering from, this mysterious and aggressive neurological disease. Identifying them is key to finding a cure for Jenny, and preventing the disease in others.

The response to our request for alternative treatments also has been overwhelming. Thank you all so very much. We are not actively following up on all of these suggestions at the moment as Jenny’s doctors feel that she should try one thing at a time. However, we have all of your offers of help and advice, and we really appreciate it.

Keep Jenny in your thoughts and send her all your good wishes telepathically!

9 comments:

Cherryzrpink2 said...

hey jenny its cerri :D
cool that you saw sisterhood
i thot it was pretty good.
howbout u?

mstrawbarry said...

JENNY!!!!!!!!!!!!!!!!!!!!!!!!!! jenza jenza jenzity jen!!! I miss you!!! it's Maranda B. from Windrush. Just wanted to say that you're one of the sweetest people I have EVER met and I hope you get better faster than Jesse Owens running on hot coals :P

lovity love love, MB

ps- how was the sisterhood? As good as the first one?

Donna said...

My 25 year old Daughter who has never had sex was pushed into the Gardasil sots. She was sick on the first one with a high temp, the second one the same, the third one left her with Fibromyaliga for life! She's now on Lyrica forever. I've never seem my always healthy daughter so sick. You couldn't touch her skin, it hurt, she couldn't wear clothes and still can't sometimes. Every muscle in her body hurt so bad that oxycodone didn't help the pain. Her temp went to 104.0. I have been fighting with her doctor since this happened last August, one year now about that shot! I have an attorney now. That is a bad shot for anyone to take. I have been warning anyone I can about the horrible side effects! Money before health is what runs this country!

I'm so sorry about your Daughter. My sympathies to her and your family..

Donna

Boston Massachusetts.

Jim said...

Donna,

Check out Dr. Lowe's research on treatment of fibromyalgia as a metabolic disease that responds to traditional hypothyroid treatment:

www.DrLowe.com

Bjorn Overbye has replicated his results, the abstract of his study can be found here: http://www.thyroidscience.com/studies/overby.2007/overbye.metabolicfailure.fibromyalgia.htm

Good luck,
Jim Witte

Cherryzrpink2 said...

hey jenjen
iss cerri again
i miss u lots
and i really hope that u can somehow get better
you dont need me to tell you
that totally sucks
anyway...
hm... i remember when u first got ur scooter...
tha was way cool
u still use it??


love you lots!
CK

nonk9 said...

http://www.cdc.gov/vaccinesafety/vaers/FDA_and_CDC_Information.htm
Concerns have been raised about reports of deaths occurring in individuals after receiving Gardasil. As of June 30, 2008, 20 deaths had been reported to VAERS. There was not a common pattern to the deaths that would suggest they were caused by the vaccine.....
Guillain-Barré Syndrome (GBS) has also been reported in individuals following vaccination with Gardasil. GBS is a rare neurological disorder that causes muscle weakness.
---
The fact that CDC researchers could not find a common pattern is extremely weak evidence for the hypothesis that there is no pattern.
If you define comparable as "life-threatening disease associated with (i.e., possibly but not definitely caused by) exposure to Gardasil," the CDC has potentially useful data for you.

millymm said...

Has anyone ever treated her for parasites? The medical profession only tests for the main ones-there r over 350 types in USA alone. I had fibromyalgia and took Nature's Secret product called Parastroy. I took it 1X day instead of 2X day and on day 8-voila! I had 3 types and then my pain in my muscles went away-never returned! My sinus issues went away also. If you have fibromyalgia-you have either too many parasites or yeast in your body- I had both. I take Garlic daily-antifungal. Contact Natures Secret company to find out if they have a liquid Parastroy and then consult your pediatrician for proper dosage.
Has she been anywhere where the water wasn't good to drink? Have her tested for giardia or dysentery.
I hope this info helps someone- I am an LPN who is into herbals and alternative medicines. I know traditional medicine frowns on this, but I believe our bodies were not designed to destroy themselves, and in this day and age, we need to take a proactive stand in our health. I would be in worse shape if I didn't follow my hunches, and I am glad I did. You can email me at cutiepiemm2006@yahoo.com GBU all!

M. said...

I was horrified to read about this mysterious illness. As a medical writer I do have one suggestion for treatment (I'm not selling anything!) If the illness is autoimmune or ALS (ALS may be autoimmune, but it's not clear), low dose naltrexone might help. This treatment has been used for just about all autoimmune diseases, as well as neurodegenerative conditions such as Alzheimer's, Parkinson's and ALS.

I have collected a page of information here: http://www.fiikus.net/?ldn but you can find many more with Google.

I really hope Jenny can get better.

roselletaz said...

Dear Jenny,
I am so sorry for your pain and suffering. I am a mom to three kids who suffer from chronic illness. I will tell you that you are very brave. You are a fighter. Know and have faith that this too shall pass. Be patient as illness has no time-line. Believe and rely on your friends and family to give you strength when you feel drained. I willl pray for you and I know in my heart that you will be ok. God bless you now and always.