Compounding? A Pharmacy’s Best Secret for Autistics Who Can’t Take Standard Medications.

By Toni Boucher

Years ago I was hired by a non-profit to supervise a residential program. One of the residents could not swallow pills so the medical staff opted to have her medication turned into a cream that she rubbed over her temples.  The medication relieved her pain and treated her seizures transdermally (through the skin). It was a win-win arrangement: Pain and seizure control without the trauma of gagging on pills every day. She loved it and with her improved quality of life – so did we!

Compounding isn’t for everyone but if you are unable to take a medication because your have difficulty swallowing pills or syrup, have an adverse reaction to inert ingredients (like gluten), need an extra low dose that is not available commercially, or require access to a discontinued medication, then compounding may be the answer for you.

Compounding is the process of making custom medications for individuals who have medication needs that can not be met through commercial manufacturing.

Compounded medications have the following benefits:

  • Cost effective (ethical pharmacists will strive to keep ingredients to a minimum whenever possible)
  • Allergen free (a medication can be reformulated without non-essential ingredients like lactose, gluten and dye that may cause reactions for some individuals)
  • Alternative dosage formulas (autistic individuals can be highly sensitive to medications and may require optimal doses that are significantly lower than those available in pill form)
  • Convenient and easy to use (medications can be created in ways that work best for you, like as a cream instead of a pill)
  • Access to discontinued medications
  • Decreased likelihood of overdose and abuse (Overdose of acetaminophen for example is the leading cause of acute liver failure in the United States)
  • Decreased negative side-effects (including lower systemic absorption)
  • Multiple medications combined in one dose
  • Increased adherence (the likelihood of taking the right amount of medication at the right time)

Talking to Your Doctor About Compounding

If you are one of those people who doesn’t take your prescribed medications because you find it difficult or impossible to swallow, fear negative reactions based on dosage, or you worry about allergies or stomach irritation, then let your doctor know. Make sure they know that there’s a reason you’re not taking your medication — not simply because you’re not interested in being compliant. Together you may decide that a custom medication is a good solution. Your doctor will need to write a prescription specifically for a formulation that is right for you and you will need to have it filled at a pharmacy that compounds medications.

Let’s be honest. It can be especially difficult to talk to your doctor when you are autistic. You can rehearse what you want to say a hundred times and still forget or not think quickly enough on your feet to ask follow up questions or answer your doctor’s questions. So here are a few tips.

  • Write down what you want to say ahead of time and hand your doctor a copy (keep a copy for yourself, so you have a record of what you told him/her).
    • Your doctor will need to know the reason(s) you are requesting a custom medication so list those. Here are the most common reasons:
      • difficulty swallowing a pill or syrup (due to taste, smell or gag reflex)
      • allergic reaction to non-essential ingredients like dye, lactose or gluten
      • hypersensitivity to standard doses with better results on low doses
      • need access to a discontinued medication
      • stomach irritation, nausea or vomiting
      • in need of a strong pain reliever but have a history of addiction
      • compelling need for a specific medication in spite of liver damage
  • Bring a trusted person to help you communicate. Discuss your symptoms, questions and concerns ahead of time with your support person, so if you forget to tell the doctor anything, they can jump in on your behalf. You might experience anxiety and/or sensory overload in a doctor’s office which will decrease your ability to communicate effectively.
  • Ask your doctor to write down his/her instructions if the medical facility does not already give you patient notes at the end of each visit.
  • Make sure you know where to have the doctor send your prescription ahead of your appointment.

How to Find a Qualified Pharmacist in Your Area?

Medications of all kinds must be formulated properly and used with caution. Taking them comes with possible risk and side effects. Compounded medications are no exception. Pharmacies that compound have specific guidelines that they must follow to provide safe reliable products.  If you and your doctor decide that you would benefit from compounding medications, you will want to find a licensed pharmacist who adheres to best practices when formulating customized medications. Both larger chains like Walgreen’s and smaller local pharmacies may be options for compounding in your area.

Don’t Give Up. Tweak the Process

It may take a little bit of adjustment to find the right custom medication for you. A good pharmacy will be willing to work with you and your doctor to get the right fit. If certain scents, specific ingredients or particular flavors are aversive to you, be sure the let them know. It might take a few tries to find just the right combination for you, but with the proper help, you can have your meds… and take them, too.


Want to read more? (This article answers frequent questions about compounding).

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