Common Medications

Obviously from the issues mentioned above, those with SLOS often take many medications for various problems and surgery. What follows is a list of medications that parents have tried. Each person is different and not all medications work for all people. As always, check with your doctor before attempting to use them.

Anesthesia:

Profopol
Thorazine
Versed (sedative for prior to masking)
Emla (topical anesthetic good for blood draws)

Stress Steroids and Fresh Frozen Plasma(FFP): There is a difference of opinion amongst doctors as to which of these should be used, and under what circumstances.

Fresh Frozen Plasma:

Also known as FFP, fresh frozen plasma is plasma from the blood and is given by IV usually when hospitalization occurs. As with all blood sources, there is a risk of infection. FFP forces the body to produce Cortisol when it is given.

Stress Steroids:

This medication is used to aid in times of stress to the body; fevers over 101 degrees Fahrenheit, surgery, broken bones, constant diarrhea or vomiting, etc.
When the body is stressed it produces Cortisol to combat the stress. Cortisol is in part made with cholesterol. In SLOS cases, there is little cholesterol in the body to use for production of Cortisol while also maintaining daily growth and development, so the thought is to give stress steroids to give the body immediate relief of the stress, and avoid the body using up what little cholesterol it has for making Cortisol.
Cortif is the name of the prescription drug used

Calculation for dosing:

50 mg per (meters) squared / 4 (by 4 for 4 times per day; QID)
The (meters)squared, aka surface area, is calculated using Mosteller's formula as square root of ((height in cm * weight in kg)/ 3600)

To boost Attention: