Nothing on this website should be construed as an attempt to render a medical opinion.  All topics in this website are merely starting points for discussion with qualified medical professionals.  No therapy or medication should be started without first consulting with your child’s doctor.

Please note what seems to work well for the treatment of symptoms in one child may not work at all for another child. Our goal is to provide a list of options for discussion with your child’s doctor.

As a parent navigating this world one question I constantly have is what can we do to help him, are there supplements or medications out there that others are using for their children that might help Reed? I thought a list of some of the medications/vitamins and supplements we give Reed may be helpful to others in our situation. Not all meds listed are given every day or needed every day, some are on an as-needed basis.

Please note: I am not a medical professional this is just what has worked for Reed, this might seem like a lot but since starting Reed on these we have seen his energy level increase his strength increase and cognitively his alertness is greater

Please consult with your doctor regarding any meds you are considering

More detailed information about some of the meds with links will be below the list

Prescription Meds

Zoloft - for anxiety

gabapentin - for neuropathic pain

levOCARNitine - for mito cocktail

ursodiol - VWM support

cyproheptadine - appetite increase annisitomy

NOURISH ORIGINAL FORMULA - nutrition

Meds Given As Needed

CBD:THC Oil - anxiety and discomfort

hydrOXYzine - for serve anxiety situations

diazePAM - neuropathic pain, spasticity

lactulose - constipation

midazolam - for Botox treatment days, puts in a relaxed state

silver nitrate stick - for granulation tissue at the site of his feeding tube

triamcinolone cream - for granulation tissue at the site of his feeding tube

Additional Med/Vitamins/Supplements:

ursodiol – Suggested by VWM research being done in Australia, may promote mitochondrial function and reduce oxidative stress in VWMD astrocytes

Resveratrol – this was recommended to give to Reed by Prof. Orna, this is what she told me regarding it “I tend to believe Resveratrol can help to delay disease progression. Resveratrol is a highly potent antioxidant used as a food supplement. We tried it in the lab and it has a significant effect on eIF2B mutant cells under conditions of oxidative stress (which is common to neurodegenerative diseases).  https://amzn.to/3OgqcWF

B- Complex  Methylfolate - this was suggested as a good vitamin for kids with Neuro conditions by Dr. Goodenowe in his lectures but I buy it just on Amazon https://amzn.to/3OefcJa

Whey Protein -  Kids with neuro conditions burn through their energy faster additional protein is needed to help them process and break down vitamins. (this was suggested in one of Dr. Goodenowe's lectures but I buy just on Amazon) https://amzn.to/3PQczP4

Creatine- Supports muscles, cellular energy, and cognitive function, https://amzn.to/3JX6Pzl

Mito Cocktail:

Alpha lipoic acid (ALA) is naturally produced in the human body in very small amounts but is also available through food sources. ALA is unique because it supports the body's free radical scavenging systems and can function in both water and fat environments. ALA can also recycle the antioxidant vitamins C and E, thereby extending their activities. https://amzn.to/44uN8ab

Acetyl-L-Carnitine (ALC) is a modified amino acid that supports cellular energy production by assisting in the transport of fat into the mitochondria where it is converted into ATP (cellular fuel). ALC is a highly bioavailable form of carnitine that can cross the blood-brain barrier, which it helps to neutralize free radicals, supports mitochondrial function, and helps to maintain normal neurotransmitter activity. Clinical studies suggest that ALC helps to maintain optimal neurological health.

Coenzyme Q10 (CoQ10) is a vitamin-like compound that plays a central role in cellular energy production. CoQ10 is found throughout the body, but is especially concentrated in the heart, liver, and kidney and production has been found to decline with age. CoQ10 functions as a potent free radical scavenger in cell membranes, as well as within blood vessels. Years of scientific research have shown that CoQ10 helps to maintain a healthy heart and vascular system. https://amzn.to/3OdcN1h

Plasmalogen:

The Following are all meds I started Reed on after finding Dr. Goodenowe's research https://drgoodenowe.com/, at the bottom are some FAQs regarding Plasmalogens

ProdromeGlia™ contains the plasmalogen building blocks for glial cells that make up brain white matter. Glia are cells that surround, support, and protect neurons. These plasmalogens commonly decrease with inflammation. Omega-9 Plasmalogen Oil (ProdromeGlia™)

ProdromeNeuro™ contains the plasmalogen building blocks for neurons that make up brain gray matter. Neurons are cells that process and transmit information in the body. These plasmalogens commonly become deficient with age. Omega-3 Plasmalogen Oil (ProdromeNeuro)

NAC – (N-Acetyl-Cysteine) – helps fight inflammation

ProdromeGTA – helps fight gut health (a lot of functional medicine stems from gut health and how that affects brain inflammation)

Here are some FAQs about Plasmalogens:

Q: What is Prodrome Glia?

A: The Glia protector oil is a natural product that supplies the building blocks necessary to build protective myelin sheath around our nerve cells (neurons).

Q: What is a Glial cell?

A: Cells within the brain and spinal cord that build the protective coating around nerve cells, this coating is called Myelin Sheath. White matter is made up of glial cells. These cells support neurons chemically and physically. They are the glue of the nervous system.

Q: What is Prodrome Neuro?

A: The Neuro Performance oil replenishes the building blocks of plasmalogens around the neurons. Grey matter is made up of plasmalogens. Prodrome Neuro helps boost the nerves which gives your brain and other vital organs stronger nerve impulses.

Q: How do they work together, what are their differences?

A: The Glia is protecting the wiring much like coating around electrical cables, and the Neuro is helping to send stronger impulses through those pathways and thus having a better-performing body and brain.

Q: What conditions can plasmalogen supplementation help with?

A: Any condition that is a result of demyelination. Some examples of this are Dementia, autism, PANDAS, MS, ALS, Parkinson’s, etc.

Q: Are they FDA-approved?

A: The FDA does not approve or disapprove dietary supplements. So no they are not and do not need to be FDA-approved. They are certified GMP (Good Manufacturing Practices)