The Preemie Growth Project

Sharing Vital Information About Nutritional Issues for Premature Babies & Special Needs Children


FAQ

Frequently Asked Questions


ELIGIBILIBILITY

Q: Can my child join?

A: We are currently accept children through December 31, 2012 who are

a) born prior to 40 weeks and/or at less than 2500g (5 lbs, 8 oz) or have neuromuscular issues, including but not limited to cerebral palsy, hypotonia, hyper-spasticity or dystonia, or who are not meeting appropriate developmental milestones;

b) who are less than twelve years of age at time of enrollment into the project;

c) who have a pediatrician;

d) who have been released from hospital care; and

e) whose parents will commit to a minimum two month participation and submitting biweekly status updates.

Q: I do not live in the United States; can my child still join?

A: Yes, but we cannot ship product out of the country.

Q: My child has brain damage/a birth defect/is sick. Can I still join?

A: Yes.

Q: I am breastfeeding; can my child still participate?

A: Yes.

Q: I am using formula; can my child still participate?

A: Yes.

Q: My child has formula allergies; can my child still participate?

A: Yes.


MEDICAL ISSUES

Q: If I use the products being employed in this study, do I still need to go to a doctor?

A: Yes. The supplements used in this study are intended to be an “addition” to normal health care. Children without a pediatrician will not be accepted into the project.


PRODUCTS

Q: What products are you using?

A: We are using “liquid plant derived colloidal minerals.” The specific brand we supply is “PDCM 72+” because it was used by the original twins, and the manufacturer provided laboratory assays.

Q: What if I want to use a different brand/product?

A: We are not currently supplying any other brand, but welcome your participation in the project to share your results. There are many other similar products marketed under different brand names, including products put out by GNC and The Vitamin Store, and we look forward to documenting the results you obtain.

Q: What quantities should I use if I pick a different brand?

A: Good question. Please use common sense and share your results.


COST

Q: How much does this cost?

A: If you commit to a minimum two month participation and biweekly status reporting, it is FREE. If you are unable or unwilling to meet those requirements, you may purchase either the brand we recommend (a 32 oz bottle of PDCM 72+ currently costs $65 plus shipping and handling which should last a 20-60 pound child for two months) or a similar one at your own expense. NOTE: We are not distributors of these or any other product, and have no financial interest in these products.

Q: Someone is paying for it. Who?

A: The Preemie Growth Project is a non-profit organization funded by private charitable donations. We believe parents of challenged children are already doing enough, and deserve as much support as we can give. You are welcome to help by donating here: Donations

Q: Will you reimburse my co-pays/pay when my child visits the doctor?

A: No.


PARTICIPANT SUPPORT

Q: I would like to talk with other parents who are already doing this. Is there a support group?

A: Yes. You will automatically be enrolled in the Google Group “Micronutrient Supplementation.” If you would like to talk to other parents before joining, please ask via the standard Google Group request process.

Q: I am in desperate need of formula / diapers / clothing / bedding / financial help. Can you help me?

A: No.

Q: I am in desperate need of formula / diapers / clothing / bedding / financial help. Can you help me, even if I don’t participate in your study?

A: No.


DONATIONS

Q: I am a caring, supportive person. How can I help?

A: You can donate help financially by donating here: Donations. If you are in southeastern Michigan, you can fill out a volunteer application Volunteer. And we also very much appreciate prayer support.

Q: I have baby clothing / diapers / formula / bedding that I am willing to donate. How can I get it to you?

A: We recommend finding a local charity that is equipped to deal with such things; unfortunately, that is not us.

Q: Are my donations tax-deductible?

A: We are recognized under law as a Michigan non-profit and qualify under Section 501(c)(3) of the Internal Revenue Code; HOWEVER, we have not finalized our IRS required paperwork. UPDATE: Being submitted this week – As of 09/17/2012! Please assume your gift is not tax deductible.


PROJECT DETAILS

Q: How many participants will be in your project?

A: As many eligible children as want to join through December 31, 2012

Q: What do you expect to see as a result of this project?

A: A decrease in infant mortality rates, faster than expected achievement of growth and developmental milestones, and for children suffering from neuromuscular issues, healthy muscular weight gain, an increase in muscle tone and strength, and a decrease in hyper-spasticity.

Q: Is there any research backing up what you are studying?

A: Yes. This study builds on already established research, and the conclusions are based on medical textbook and established veterinary research. You can view some of it here: Science

Q: How did a non-medical professional figure this out?

A: Luck. You can view the videos on the home page for the details.

Q: Do you have any FDA approvals?

A: No, the compounds being used are “over the counter supplements” and as such, not under the governance of the FDA. Appropriate documentation as to content via assay has been obtained from the company providing product.

Q: What are the outcome that parents will be reporting and how often?

A: Parents are asked to give bi-weekly reports on any observed changes in appetite, weight, tone or strength, cognitive, and energy, as well as any general parental observations they think would be relevant to other parents thinking about trying this.

Q: Are there target cofactors within specific metabolic pathways targeted?

A: No. This is a parent driven project to determine if this nutritional approach (based on pg 631 of the Textbook of Pediatric Gastroenterology & Nutrition, among other sources) will continue to duplicate the results experienced by the initial children in the project. That is an excellent question, however, and hopefully someday a well-paid researcher will answer it.

Q: When did this start?

A: Premature babies have been benefitting since late 2009; children with neuromuscular issues have been being recruited since June, 2012.


MORE QUESTIONS

Q: Isn’t a classic study “double blind”?

A: Yes. And someday there may even be a formal study. In the meantime, this project is 100% parent driven, and that means you get to decide.

Q: Are you just “shilling” for some vitamin company?

A: No. There are many brands out there. We like PDCM 72+ but we have no financial affiliation with the company.

Q: What is in it for you? No one does something for nothing!

A: This is a very good question. I am trying to be obedient, and love my neighbor as myself. Yes, this is a lot of work, and I periodically wonder if you folks (especially the obnoxious ones who doubt me) are worth it, and since the man whose teachings I am trying to follow was executed, I can only answer that I may not be the brightest bulb in the box, but I am trying to do the right thing.

Q: Why are you just giving it away? Parents would pay a fortune if this does what you say it will! What is wrong with you?

A: It is in the medical textbooks, I did not invent it, I am not a manufacturer of the product, and I am a programmer, not a doctor. If anyone wants to give my husband a bazillion dollars, however, feel free; he gets a little irritable due to the amount of time I am devoting to the project when he sees no perceived benefit to our family. The fact he supports me nonetheless is a tribute to what a great man I married. I Am Lucky.

Q: I am a professional/researcher. How can I learn more?

A: Credentialed professionals can access our data by completing an application here: Professional Data Review

Q: I am a parent. How can I learn more?

A: You may submit questions here: Contact Us We know you are under a great deal of stress, and will do our best to answer your questions promptly.

Q: I want to learn more. Do you have a mailing list?

A: Yes, we do. You can sign up for it here: Maiing List