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RRP ISA Survey Results
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    Resources

     

    1. Support for Patients and Families Affected by RRP
    2. How to order DIM (Phytosorb-DIM).
    3. How to access medical abstracts and related informational links
    4. Make a Wish Foundation
    5. Free and Reduced Rate Travel Information
    6. How to Get Beta-Mannan™ & How to Use it
    7. Audio Amplification Devices (Chattervox, etc.)
    8. Support for People with Oral or Head and Neck Cancer




    Support for Patients and Families Affected by RRP


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    How to order I3C and DIM

    We no longer recommend I3C. We strongly recommend getting a bone mineral density (BMD) scan before starting DIM, and following up on annually after that. You may order Phytosorb-DIM from:

    BioResponse
    P.O. Box 288
    Boulder, Co. 80306

    Order products by e-mail at orders@bio-response.com, (303) 447-3841;
    questions to Michael Zeligs, MD at zeligsmd@bio-response.com. Call BioResponse for current pricing.

    BioResponse has three products, as follows.

    1. Phytosorb-DIM-DIM Capsules; 150 mg; 60 capsules per bottle ($29.95) or 75 mg; 90 capsules per bottle. As always, consult with your physician.

    2. Phytosorb-DIM-DIM Flavored* Sprinkles; 9.0 grams per bottle with directions indicating dosage per teaspoon.

    Dosages: Proper dose levels are essential if one seeks therapeutic results from DIM. Bio-Response recommends from 7-8 mg/kg for most RRP patients (take your weight in pounds, divide by 2.2 and multiply by 7-8. That's the suggested dosage in milligrams). Once a day dosing should suffice. For guidelines on >8mg/kg, consult Dr. Zeligs directly at the e-mail address shown above.

    BioResponse has reformulated its "Sprinkles". These new formulations require lesser amounts of the powder to deliver the increased suggested dose. As always, consult with your physician. Detailed dosing instructions are included on the bottle label, but if you have questions, call BioResponse and ask about RRP-dosing guidelines, which are as follows: Amount of Sprinkles in Teaspoons (tsp.) up to 25 lbs. 1/8 tsp 25 to 50 lbs 1/4 tsp, 50 to 75 lbs 3/8 tsp, 75 to 100 lbs 1/2 tsp 100 to 150 lbs 3/4 tsp.

    For an informative article comparing DIM with I3C with a well-developed bibliography, see http://www.dimfaq.com/site/cruchoice.htm.

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    How to access medical abstracts and related informational links

    Medicus Medical Search. This will also allow you to access multiple medical databases. The search is free.

    Medscape and select Medline as a search engine. This will also allow you to access multiple medical databases. The search is free.

    PubMed and select Medline as a search engine. This will also allow you to access multiple medical databases. The search is free.

    RLML Medical Bookmarks (extensive reference for important multiple medical links and bookmarks on the Internet): http://www.medlib.iupui.edu/ref/bookmarks.html

    University of Pittsburgh Voice Clinic: http://www.upmc.edu/upmcvoice

    ENT academy link site: http://www.entnet.org/weblink.html

    An extraordinarily valuable resource can be found at the Sloan-Kettering Cancer Center site on herbs and botanicals. This material has little relevance for RRP, we think, but it is still very interesting.


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    Make a Wish Foundation

    Make-A-Wish Foundation is for kids with "Life Threatening" illnesses; it is not a requirement that the child be terminal. It is for kids who suffer from diseases which increase the risk that they may not make it through their 18th birthday. They have already provided service (a trip to Disney World) for one child who had RRP. Parents can contact them directly.

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    Free and Reduced Rate Travel Information

    Try Mercy Medical Airlift at 888-675-1405, mercymedical@erols.com. They're an excellent clearing house for all air travel needs of this sort.

    You can also visit the Patient Travel website at www.PatientTravel.org or call the Patient Travel Helpline at 800-296-1217. They can put you in touch with your local Angel Flight Network which provides free air travel for patients who need to travel to receive medical care. Most of these flights are with Volunteer Pilots and many can be on either private planes or Small Corporate Jets.

    For patients who travel longer distances or who can't fly on the smaller planes there is a National Patient Ticket HELPLINE. The number is 1-800-325-8908. They have access to tickets donated by the airlines or by airline customers who give frequent flyer miles to charity. If one of these tickets is not available they are usually able to get significantly reduced rate tickets for you which are not available directly through the airlines.

    As far as a place to stay, there is a National Association of Hospital Hospitality Houses. They offer rooms at very reasonable rates (usually <$25). Their website is www.nahhh.org. For those who have children receiving care, you can also see about staying at the Ronald McDonald House. They usually have rooms for families (up to 4 people) for about $11 a night. These are not luxury hotel rooms, but they are clean and okay for a night or two.


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    Beta Mannan

    How to get it:

    Normally, a bottle of 60 capsules costs $24.50. Alotek has indicated that it will provide Beta-Mannan™ to RRP patients at half price if they identify themselves as RRP patients to our organization prior to ordering by phone. After talking with patients, we will inform Alotek to process the reduced-fee order.

    If you're interested in taking it, go to http://www.alotek.com/index.shtm (800) 236-7513/ 406/863-9824 and let them know you're an RRP patient. Alotek will send you the bottles directly at the reduced rate.

    Dosage:

    There are 60 capsules in a bottle (15 days worth for an adult). Alotek indicates that children (LESS THAN 8 years old), Beta-Mannan™ should be used 2 caps/day orally (mixed with food), for 90 days; 1 bottle per month for 3 months. Adults and children over 8 years old get the full 4 caps/day in divided doses over the course of the day for 3 months. Let the capsule dissolve in the mouth and then chew the remaining powder and swallow. It doesn't matter whether the capsules are taken with food or not. You may continue to take the product beyond the 3 months suggested by Alotek.

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    Audio Amplification Devices and Electrolarynx Products

    http://www.voicestore.com/
    http://www.larynxlink.com/Suppliers/commaids.htm

    Ed note: RRP ISA has been privy to some serious issues with Communicative Medical in Vancouver, WA. We have endeavored to contact company management but there has been no indication that the company is truly committed to addressing our concerns (e.g., it has not responded). We would like to encourage vigorous business competition/more availability of these devices in this region.

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    Support for People with Oral or Head and Neck Cancer

    At least 25% of all head and neck (H&N) cancer is thought to be caused by HPV. Many oral cancers are also thought to be HPV-caused. The following links might be of interest if you know of anyone with oral or H&N cancer, or if you are interested just for yourself.

    http://www.spohnc.org/ 


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