Friday, April 24, 2009

Cushing's Syndrome and ROHHAD

It is very true that no one knows exactly what ROHHAD "is" or is capable of being. There are cases of ROHHAD children also having Cushing's Syndrome.

What are signs of Cushings: Signs and symptoms of Cushing’s Syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates. Most cases of Cushing’s syndrome are not inherited.

Other common signs and symptoms include

  • severe fatigue
  • weak muscles
  • high blood pressure
  • high blood glucose
  • increased thirst and urination
  • irritability, anxiety, or depression
  • a fatty hump between the shoulders

This is very important to us and has been something I have watched for since October 2007. Recently I connected with another mom of a child who has very similar symptoms (and different at the same time) as Haven and other children we know. Susannah was officially diagnosed with Cushing's Syndrome: Micronodular Adrenal Hyperplasia

Haven was tested for Cushing's using the late-night salivary cortisol measurements in 2007. However, since being diagnosed with Ganglioneuroblastoma Cancer and ROHHAD Syndrome we have only done Cortisol testing one other time - this December after going off Prednisone.

I have emailed a few time with Susannah's mom to find out a bit more information before I went to our Endo doctor. Last night I emailed him. He found it very interesting and was happy that I brought Susannah to his attention as a note for Haven. We know ROHHAD has Cushing's cases too so it's always best to seek out everything.

I would like to add that Susannah is doing well and after almost 3 week since surgery she is recovering like a champ. She has lost 4 lbs since surgery, her mood swings have gotten better, her urination and drinking has improved. We are very excited for Susannah's family and constantly send our thoughts her way. I thank her very much for sharing her information with us - everything helps - even when you feel you can't offer much for us.

Cushing's Help and Support

Cushing’s Support and Research Foundation, Inc.
65 East India Row, Suite 22B
Boston, MA 02110
Phone and Fax: 617–723–3674

The National Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 1–703–738–4929

No comments:

Post a Comment