Addi and Cassi - Childhood Alzheimers - Help find a cure » Niemann Pick Type C Parents & Family Forum

Niemann Pick Type C Parents & Family Forum

December 16th, 2007

A Quest For Treatments Now For Niemann Pick Type C

This area of The Addi and Cassi website is for parents and family members who have children who have been diagnosed with Niemann Pick Type C and allows us to share helpful information with each other. We provided this public forum with the firm belief that the sharing of information on Niemann Pick Type C is a critical part of finding therapies and ultimately a cure to this fatal disease. We also believe doctors and researchers will view our posts and hopefully make connections we can’t.

As parents with Niemann Pick Type C kids, we are living in a clinical trial situation each day. We are all trying various measures to stop this horrible disease from progressing and we can learn so much from each other if we share data that is collected in a logical way. We never want another parent to receive a diagnosis of Niemann Pick Type C and have no idea what to do or how to get instant information. Don’t forget you will need to do a simple math calculation in order to post on this forum - this prevents autobot spam! If you have any problems posting, please email us.

Disclaimer: We take no responsibility for the content herein and have made no effort to confirm or moderate the information being shared. We are simply one family trying to connect with may other families to find solutions and therapies in the near term for all our kids!

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Drug & Gene Therapies
Existing Drugs and Potential Therapies

	Last Post	Topics	Posts
Zavesca (Miglustat) Is it proving effective?	July 25, 2008 - 9:00 pm by Chris Hempel	8	48
ADD/ADHD Drugs Methylphenidate, Metadate, Requip	February 15, 2008 - 9:17 am by Laura Gallo-Hadley	1	12
Alzheimer's Drugs Aricept, Ebixa, Rember, Enbrel	August 12, 2008 - 12:34 pm by Chris Hempel	5	7
Antibiotics Amoxcillion, Rifampin - role of antibiotics in Neuro Diseases	July 25, 2008 - 8:15 pm by Chris Hempel	4	19
Anti-Inflammatories NSAIDS, Asprin, Naproxen, COX-2 Inhibitors	July 26, 2008 - 2:20 pm by Chris Hempel	2	6
Cholesterol Drugs Statins, Vytoirin, Zetia	December 31, 2007 - 2:37 am by nancy Trombley	1	1
Diabetes Drugs Avandia (Rosiglitazone), Januvia, Ketasyn	July 26, 2008 - 12:21 pm by Chris Hempel	1	1
FDA Approved Drugs Gleevec Cancer Drug, NCGC Approved Drug Screen	August 16, 2008 - 1:41 pm by Chris Hempel	3	6
Seizure Medications & Anti Convulsants Dilantin, Tegretol, Valproic Acid, Felbamate, Klonapin	August 16, 2008 - 1:34 pm by Chris Hempel	4	8
Stem Cell Therapy Ideas For Experimental Options? Stem Cells, Bone Marrow Transplants	July 25, 2008 - 8:29 pm by Chris Hempel	2	13
Steroids Types of helpful steroids	-	0	0
Zetia Ezetimbe (Blocking Cholesterol In The Bowel)	December 22, 2007 - 3:57 pm by Chris Hempel	1	1

Supplements & Other Natural Therapies
Herbs, Spices, etc...

	Last Post	Topics	Posts
Antioxident Therapy Supplements, Chinese Herbs	December 27, 2007 - 8:33 pm by nancy Trombley	1	3
Ayurveda	August 12, 2008 - 8:50 am by Chris Hempel	2	3
Berries, Fruits, Nuts Blueberries, Acai Berries, Monavie Juice, Mangosteen	August 12, 2008 - 11:47 am by Chris Hempel	3	3
Cocktail Area to discuss cocktail strategy of treatments	March 25, 2008 - 6:51 am by Bluto	1	2
CoQ10 CoQ10 is a natural, fat-soluble nutrient present in virtually all cells. CoQ10 also is known as ubiquinone (existing everywhere there is human life).	January 5, 2008 - 2:40 am by Nancy Trombley	3	9
Calcium	-	0	0
Colostrum Bovine colostrum is the pre-milk fluid secreted by cows in the first hours after birth	February 10, 2008 - 11:01 pm by Nancy Trombley	1	3
Curcumin/Tumeric Curcumin is the principal curcuminoid of the Indian curry spice Turmeric, the other two curcuminoids being demethoxycurcumin and Bis-demethoxycurcumin	August 16, 2008 - 1:48 pm by Chris Hempel	4	5
Copper Copper is required in the formation of hemoglobin, red blood cells as well as bones, while it helps with the formation of elastin as well as collagen	December 29, 2007 - 10:24 pm by Chris Hempel	1	1
Cyclodextrin β-cyclodextrin: seven sugar ring molecule	December 27, 2007 - 6:12 pm by Chris Hempel	2	20
DHA Docosa-hexaenoic acid - a fatty acid building block of fat	December 29, 2007 - 12:59 pm by Laura Gallo-Hadley	1	4
DHEA Dehydroepiandrosterone is an endogenous hormone (made in the human body), and secreted by the adrenal gland	January 5, 2008 - 2:50 am by Nancy Trombley	2	6
Echinacea Echinecia is an herbal remedy to keep in mind when fighting off viral infection. Echinecia is purported to work as an anti-viral because of its polysa	-	0	0
Fish Oils and Omega-3 Omega-3 essential fatty acids are one of the basic building blocks of the brain	July 25, 2008 - 9:25 pm by Chris Hempel	2	4
Flavanoids Luteolin, Myricetin	August 12, 2008 - 12:10 pm by Chris Hempel	1	1
Grapine Grapine is a powerful antioxidant proanthocyanidins derived from grape seeds and maritime pine bark	December 27, 2007 - 3:08 pm by Chris Hempel	1	1
Homeopathy/Alternative Medicines Chinese Medicine, Naturopathic Medicine, Chiropractic, Acupuncture and other “alternatives”	January 4, 2008 - 6:48 pm by Anthony Leoni	1	3
Iron Iron is an important mineral for the body. Iron transport and storage of oxygen, aids in energy production and cell diffusion, helps the immune and c	December 29, 2007 - 4:30 pm by donaxemena	4	5
Mangosteen Exotic South East Asia Fruit with Xanthones/Anti-Oxidant Properties	February 5, 2008 - 12:11 pm by Bluto	1	5
Reliv	January 16, 2008 - 11:59 am by Chris Hempel	4	7
St. John's Wort (Hyperforin) Hyperforin - like many prescription antidepressants - inhibits the reuptake of the neurotransmitters norepinephrine, serotonin, and dopamine.	January 10, 2008 - 10:22 pm by Nancy Trombley	1	4
Vitamins Vitamin D3	July 26, 2008 - 12:09 pm by Chris Hempel	2	3
Zinc Zinc is an essential mineral that is found in almost every cell and stimulates the activity of approximately 100 enzymes	January 5, 2008 - 11:27 pm by Nancy Trombley	1	3
What Have You Tried On Your Child? Let us know what things you have given your child to try and save their life	May 2, 2008 - 9:09 pm by Nancy Trombley	3	5

Behavior and Symptoms Discussion
Area to discuss behaviors and NPC symptoms

	Last Post	Topics	Posts
Ataxia, Walking/Motor Skills Stumbling, Falling, etc.	December 30, 2007 - 10:39 pm by Chris Hempel	2	3
Black Tongue What causes this?	January 4, 2008 - 6:06 am by Sherry Richardson	1	2
Cataplexy Muscle Weakness, Laughing and Collapsing	July 4, 2008 - 9:48 am by Chris Hempel	3	9
Coughing and Secretions How Can You Control These? Choking Spells..	August 6, 2008 - 9:13 pm by Chris Hempel	7	10
Chewing/Choking on Food	February 8, 2008 - 1:14 pm by mandymum	2	4
Dark Circles Under Eyes Do you kids have these?	January 6, 2008 - 11:45 am by donaxemena	1	7
Dementia	-	0	0
Enlarged Liver What is happening with your child's liver?	December 29, 2007 - 4:45 pm by donaxemena	2	3
Enlarged Spleen What is happening with your child's spleen?	December 29, 2007 - 4:46 pm by donaxemena	2	5
Fatigue/Lack of Energy Does Your Child Experience This? What Is The Cause? Does Anything Help?	December 29, 2007 - 4:47 pm by donaxemena	2	6
Feeding Tubes Inability To Eat, Issues w/Tubes	January 8, 2008 - 10:09 am by donaxemena	3	6
Ears (Red Ear), Hearing Loss, Hair	January 16, 2008 - 1:02 pm by Chris Hempel	3	4
Incontinence Stratigies and Solutions for Incontinence, Potty Training Problems	August 11, 2008 - 7:11 pm by Chris Hempel	1	1
Jaundice Did your child have jaundice at birth?	February 22, 2008 - 1:50 pm by Chris Hempel	1	1
Joint Pain Possible Treatments	February 10, 2008 - 11:06 pm by Nancy Trombley	1	6
Neurological Symptoms Area to discuss neuor issues with brain	December 29, 2007 - 4:57 pm by donaxemena	1	1
Nose Bleeds	February 18, 2008 - 7:59 am by jenelle	4	7
Pain Management How to Control Pain	January 3, 2008 - 6:09 pm by red_head_95	3	4
Pneumonia	August 6, 2008 - 8:40 pm by Chris Hempel	4	8
Progression of Disease	December 30, 2007 - 10:35 pm by Chris Hempel	1	3
Psychotic Episodes	January 7, 2008 - 8:12 pm by Nancy Trombley	1	2
Seizures What To Look For? How Do You Control Them? What drugs have you used?	August 14, 2008 - 9:10 pm by Chris Hempel	7	12
Sleep Problems	January 5, 2008 - 2:00 pm by Chris Hempel	1	1
Staring Spells Do you kids have these? How long do they last?	January 5, 2008 - 5:17 pm by Chris Hempel	2	10
Teeth/Dental How are your child's teeth?	January 1, 2008 - 10:56 am by Judy Desouza	3	5
Thyroid Family histry of problems? Main function is to produce thyroid hormones, which control the body’s metabo	January 7, 2008 - 6:55 am by Lorna	1	5
Tics Sudden, repetitive, nonrhythmic movements	-	0	0
Unusual Behaviors What To Watch For, What Behaviors Does Your Child Exhibit?	January 26, 2008 - 7:46 am by torolimon	6	18
Verticle Eye Gaze Palsy How many kids have this symptom? How does it progress?	December 29, 2007 - 4:26 pm by donaxemena	2	3
Wound Healing Is your child slow to mend wounds?	January 16, 2008 - 1:11 pm by Chris Hempel	1	7

Education & Physical Therapy Ideas
What have therapists or families been doing that seems helpful or not helpful?

	Last Post	Topics	Posts
Occupational Therapy	-	0	0
Physical/Physiotherapy	December 29, 2007 - 11:58 am by Anthony Leoni	2	3
Speech and Language	December 29, 2007 - 12:23 pm by Anthony Leoni	1	1
Vision Therapy	December 29, 2007 - 1:53 pm by Anthony Leoni	2	3
Helpful Products Area to post information on prodcuts that can help NPC kids	July 5, 2008 - 3:20 pm by Chris Hempel	5	6
Other ideas	January 1, 2008 - 3:18 pm by Danielle	3	3
Equine Therapy Therapeutic horse back riding	-	0	0

Dietary Strategies & Experiences
Dietary Experiences

Last Post	Topics	Posts
Milk & Dairy	January 5, 2008 - 1:46 pm by Chris Hempel	2	6
What Kind of Diet Is Your Child On?	January 5, 2008 - 2:10 pm by Chris Hempel	2	5
Food Allergies Has Your Child Been Tested For Food Allergies?	January 8, 2008 - 10:40 pm by Laura Gallo-Hadley	1	3

Forums

Last Post

Topics

Posts

Milk & Dairy

January 5, 2008 - 1:46 pm

by Chris Hempel

What Kind of Diet Is Your Child On?

January 5, 2008 - 2:10 pm

by Chris Hempel

Food Allergies
Has Your Child Been Tested For Food Allergies?

January 8, 2008 - 10:40 pm

by Laura Gallo-Hadley

General
What Others Ideas Do You Have

	Last Post	Topics	Posts
Accessing Government and Educational Services Tips and Stories about gaining access to Social Security, School Services, etc...	January 4, 2008 - 8:55 am by torolimon	2	6
Brain Scans Where To Go, What You Can Learn?	July 26, 2008 - 1:40 pm by Chris Hempel	2	2
Carrier Testing How to get family members tested for NPC	August 6, 2008 - 8:52 pm by Chris Hempel	3	4
Coriell Gene Repository Submit your children's samples to Coriell to help research	July 26, 2008 - 11:41 am by Chris Hempel	1	2
Family Genetic Cholesterol Issues/Heart Disease History Area to discuss family linkages to NPC	January 16, 2008 - 12:38 pm by Chris Hempel	3	4
Ideas for New Discussion Categories What else should we have on this website?	December 29, 2007 - 1:32 pm by Laura Gallo-Hadley	1	5
Insurance	-	0	0
Legal Laws we are facing, regulations, HIPPA, etc	December 31, 2007 - 12:22 pm by Chris Hempel	1	1
List of Families With NPC Children Children Who Currently Have NPC, Those who have passed away from NPC (rest their souls)	August 10, 2008 - 6:03 pm by Chris Hempel	10	13
Medical Equipment NNPDF Exchange Program	July 26, 2008 - 1:56 pm by Chris Hempel	1	1
Medical Records How to best obtain them, what is the process?	-	0	0
National Institues of Health Study (NIH) How to Enroll Your Child, Who To Contact, Why This Study Is Important	July 26, 2008 - 12:33 pm by Chris Hempel	1	1
Never Forget The Precious Children Memorials and Writings For Children Lost	August 12, 2008 - 12:15 pm by Chris Hempel	9	14
Personal Theories Cocktail Types of Treatments	December 29, 2007 - 5:40 pm by donaxemena	1	3
Religion, Spirituality, Prayers, Books Post A Comment To Help Others	August 17, 2008 - 8:59 am by Chris Hempel	4	5
Stories of Missed Diagnosis How your child was diagnosed, inaccurate diagnosis, etc.	January 16, 2008 - 12:23 pm by Chris Hempel	1	1
Travel By air, by car, general tips	August 6, 2008 - 9:28 pm by Chris Hempel	2	3
Your Child's Doctor(s) List Of Doctors Worldwide Who Are Treating NPC Kids	August 6, 2008 - 9:43 pm by Chris Hempel	6	17
Your Child's Personal History with NPC How Was Your Child Diagnosed, What Stage AreYou Today	December 30, 2007 - 7:21 pm by Chris Hempel	6	10

Most Recent Posts

	Started	Last Post	Posts
Religion, Spirituality, Prayers, Books Books To Help with Loss/Coping	August 17, 2008-8:59 am by Chris Hempel	August 17, 2008 - 8:59 am by Chris Hempel	1
Religion, Spirituality, Prayers, Books P R A Y E R S	December 29, 2007-1:32 pm by Laura Gallo-Hadley	August 17, 2008 - 8:54 am by Chris Hempel	4
Curcumin/Tumeric Articles about Curcumin	August 16, 2008-1:48 pm by Chris Hempel	August 16, 2008 - 1:48 pm by Chris Hempel	1
FDA Approved Drugs Lithium	August 16, 2008-1:41 pm by Chris Hempel	August 16, 2008 - 1:41 pm by Chris Hempel	1
Seizure Medications & Anti Convulsants Topomax, Clobazam (Frisium), Midazolam	August 16, 2008-1:34 pm by Chris Hempel	August 16, 2008 - 1:34 pm by Chris Hempel	1
Religion, Spirituality, Prayers, Books Poems	August 16, 2008-12:41 pm by Chris Hempel	August 16, 2008 - 12:41 pm by Chris Hempel	1

About the Addi and Cassi - Childhood Alzheimers - Help find a cure forum
Currently Online: 2 Guests Maximum Online: 20	Forums: Groups: 6 Forums: 95 Topics: 214 Posts: 497	Members: There are 19 members There are 30 guests Daddy has made 26 posts	Top Posters: Chris Hempel - 167 torolimon - 29 Anthony Leoni - 14 Laura Gallo-Hadley - 12 donaxemena - 7

About the Addi and Cassi - Childhood Alzheimers - Help find a cure forum

Currently Online:

2 Guests

Maximum Online: 20

Forums:

Groups: 6

Forums: 95

Topics: 214

Posts: 497

Members:

There are 19 members

There are 30 guests

Daddy has made 26 posts

Top Posters:

Chris Hempel - 167

torolimon - 29

Anthony Leoni - 14

Laura Gallo-Hadley - 12

donaxemena - 7

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