Lysosomal storage disorders

Lysosomes are the recycling centers of our cells. They contain enzymes that break down waste. When a person doesn’t have a certain enzyme, waste can build up. Some common types of disorders we treat include:

• Mucopolysaccharidoses, a group of disorders
• Gaucher disease
• Fabry disease
• Pompe disease

Disorders of carbohydrate metabolism

The most common type is galactosemia, which results when the body can’t break down a type of sugar called galactose. Symptoms include:

• Jaundice
• Vomiting
• Enlarged liver

Disorders of amino acid metabolism

These disorders result when the body can’t use certain amino acids found in protein. The most common disorder is phenylketonuria (PKU). Others include:

• Maple syrup urine disease
• Tyrosinemia
• Homocystinuria

Fatty acid oxidation disorders

These disorders affect the body’s ability to use fats for energy. Symptoms can develop after intense exercise or after a person goes a long time without eating.

Disorders of energy metabolism

These disorders affect the body’s ability to turn calories from sugars, fats and proteins into energy. Problems can range from muscle fatigue to learning disabilities.

Insurance

Most insurance plans that cover medical food and formula require advance approval. If we don’t have this approval, you may be billed or have your order delayed.

If your insurance has changed since your last order, please call OHSU registration at 503-494-8505 as soon as possible so we can update our records.

Medicare and some employer plans don’t cover medical food or formula. It’s best to check with your plan about your coverage.

If you’re shopping for insurance, ask the insurer:

• If CPT code S9435 (medical foods for inborn errors of metabolism) is a covered benefit under your plan for your diagnosis. You can ask us for your diagnosis code.
• What your deductible and out-of-pocket costs will be for medical food or formula
• If you’ll have a copay for medical food or formula

If your insurance doesn’t cover medical food or formula, you can:

• Contact OHSU Financial Assistance
• Ask OHSU Patient Billing Services about a payment plan
• Apply to a patient assistance program for people with rare diseases
• Ask us to speak with your insurer about your needs
• Pay out of pocket

Ordering

It’s best to order through MyChart. You can also order by phone at 503-494-2416. We don’t take email orders.

For MyChart orders:

• Open the Messages tab.
• Choose “send a non-urgent medical question.”
• Choose “other question.”
• Choose our dietitian or another member of the metabolic disorders team.
• In the subject line, please write whether you are placing a food order, formula order or both. Include “urgent” if needed.
• In your message, please tell us:
  • Formula or food items needed, number of items, flavors and other details
  • If you’re ordering formula: How many days of formula you have at home
  • Your shipping address
  • Your insurance company and policy number
  • Note: We need all this information in each order.

Pickup

If you live in the Portland metro area (Multnomah, Clackamas, Washington, and Clark counties), we request that you come pick-up your orders in person at the Food Room. The alternative is dropshipping your order (allow up to 3 weeks). If you need assistance with picking up your orders in person, please let us know. 

You can pick up items Monday through Friday between 8:30 am and 4:30 pm. 

Please give at least 2 hours notice and confirm with a metabolic team member.  

Our Food Room is located at: 

Child Development and Rehabilitation Center (CDRC) 
707 SW Gaines St.
Room 1131
Portland, OR 97239

There is free patient parking in Lot 50 in front of the building. If you are parked at Doernbecher’s and are visiting the Food Room, you may want to borrow a wagon from reception to return your products to your car.

Shipping

If you live outside of the Portland metro area, your order may be drop shipped or shipped directly from the Food Room depending on supply and shipping costs.  

You may specifically request a Food Room shipment in your message if you need your items quicker. You will need to place your order before 1 PM on a business day to have the best chance of your items being shipped the same day. 

We expect Food Room shipments to arrive within 3 days. If your order is delayed, please call us at 503-494-2416 to check on the status.  

Upon request, we can provide you with a tracking number for any of your shipments. 

We cannot ship:

• By urgent or express shipping.
• Outside of the continental United States. If you plan to travel outside the continental U.S., please talk to us in advance so we can make sure you have what you need before you go.