The DIPG / DMG Resource Network

Steroids – Practical Advice from a Parent's Perspective

When a child is diagnosed with DIPG, they are commonly put on a steroid. Because of the location of DIPG , the high risk of the tumor swelling and causing more side effects, the use of steroids are necessary to help.  Steroids are an anti-inflammatory used to reduce swelling and inflammation around the tumor.

“What we are using the steroids for in DIPGs is to calm the inflammation and swelling that you see after radiation” says Dr. Trent Hummel, Pediatric Neuro-Oncologist, Cincinnati Children’s Hospital.

Although the use of steroids is sometimes crucial, it doesn’t come without side effects. The most common ones being rapid weight gain, sleep problems (insomnia), mood changes, acne, dry skin, and thinning skin. These side effects can be very difficult to manage.

“The swelling can cause symptoms and can cause the patient to regress with their clinical symptoms. Most physicians will increase the steroids to get the clinical result that is desired and they will try to quickly back off because of the side effects.”, added Hummel. “The mantra we have as pediatric neuro-oncologists is we will give the steroids but as soon as we raise that dose, we will also try to bring it back down”.

In an effort to learn more about managing the side effects of steroids, we polled parents for practical tips and advice from both DIPG and medulloblastoma support groups.  Rather than medical advice, their tips are personal opinions on how they dealt with steroid use and coped with the side effects. 

Disclaimer: Names have been modified to protect the parent’s privacy.  Always consult with your doctor prior to implementing any changes to yours or your child’s care.

Sleep Problems:

  • We gave our son melatonin at night to help him sleep.  MF
  • We used melatonin to help sleep. JG

Rapid Weight Gain:

  • We are doing a keto diet and I think that is making a big difference because he isn't burning through carbs/empty calories. JA
  • We really watched the kind of food he ate. It’s hard but we really tried to eat healthy foods and stayed away from junk food, sweets and things. JG

Mood swings:

  • The emotional toll on my daughter was so hard [that we worked with her doctor for prescription depression treatments]. My daughter did not want to take that either, but it seemed to take the edge off the simultaneous anger and sadness and fear. "Roid Rage" is real. SM

Other alternatives:

  • Turmeric helped reduce inflammation over time also when taken regularly. I believe it also helped remain on a “lower dose” steroid regime and aided in coming off without severe withdrawals during the taper. NP
  • We also are doing a fairly aggressive CBD/THC regimen right now during radiation (second round) which could be helping with his mood and sleep. JA

Learn more about steroid treatment for DIPG