Share Your Story: A Place of Healing

Share Your Story: A Place of Healing

by | Dec 10, 2020 | Rheumatology

Meet Norah, a patient seen by our Rheumatology experts. Learn more about her journey below.

Blog written by Norah’s mom, Julie of Dallas, TX.

During the summer of 2018 we brought our 3-year-old daughter, Norah, to Scottish Rite for Children with unexplained weakness. Previously a rough and tumble toddler, Norah had stopped running and playing. She requested to be carried everywhere. Her whole demeanor was subdued, and we were desperate to know what was weakening our spunky girl.

The Rheumatology team at Scottish Rite immediately recognized that Norah was suffering from a rare form of childhood arthritis, called Juvenile Dermatomyositis (JDM). JDM is rare enough that many children go months and even years before getting a diagnosis, but Dr. Nassi needed only minutes. The skilled and compassionate nurses began an aggressive treatment course of IV medications that day to slow and reverse the weakness that had overtaken her. 

The initial months of treatment required a very difficult adjustment for our family of five, but it became clear that Scottish Rite was going to have our backs, both medically and emotionally. At her weakest, Norah could not lift her head off the bed or sit without support on her sides. Her swallowing muscles weakened, requiring a nasogastric feeding tube. A port was placed in her chest for her many doses of IV medications. Absolutely everything Norah needed medically, Scottish Rite was able to provide. It was a much needed one-stop-shop for us during a stressful time. For many appointments, Norah and I would stay in her exam room while specialist after specialist rotated in and out to give her the care she needed. Dieticians, occupational therapists, speech therapists, developmental disabilities practitioners, mental health counseling, our heroes in Child Life – the list goes on and on. The level of teamwork across specialties is an inspiration.

It is also an inspiration to know that this level of care is offered at Scottish Rite to all patients, regardless of their ability to pay. 

Now, Norah can run, jump and play again with her two older brothers, plus her new kindergarten friends. She had some hard days and surely those memories are difficult and persistent, but her overall take away is that Scottish Rite is a place of healing and loving attention. Our appointments are less frequent now, but it always feels like we are visiting friends. From the moment we walk in, to the smell of popcorn, to the final minutes when we allow her to finally spend the dime she has been saving all month for the gumball machine, Scottish Rite makes what could be a traumatic day into a treat for her. We credit that atmosphere of positivity mixed with expert care, for her miraculous recovery and continued progress.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Juvenile Dermatomyositis

Juvenile Dermatomyositis

by | Nov 17, 2020 | Rheumatology

What is juvenile dermatomyositis (JDM)?

  • juvenile = this condition happens in children
  • dermato = skin
  • myositis = muscle

Symptoms of JDM include muscle inflammation (myositis) that results in weakness, and skin (dermato) rash. Other symptoms may include:

  • Getting tired easily.
  • Trouble walking, playing, brushing your hair or going up and down stairs.
  • Problems eating and drinking.

There are several different steps to confirm diagnosis. Below is what you can expect if your child potentially has JDM: 

Lab

  • Your child will need blood work. This will help the doctor know what is going on inside the body.
  • Once in the lab, your child will sit in a chair and a large rubber band or strap will be wrapped around their arm (also known as a tourniquet).
  • Then the lab technician will place a needle in their arm.
  • It will be very quick, and once finished, a colorful bandage wrap will put around the arm.

MRI (Magnetic Resonance Imaging)

  • An MRI is also needed to take pictures so that the doctor can see inside your child’s body.
  • The patient will need to go inside a big tube that is shaped like a donut.
  • The machine makes loud banging noises when taking pictures, but we offer the child the option of watching a movie or listening to music while in the MRI.
  • The most important thing is that the patient stays still during the test.

Muscle Biopsy

  • To help the doctor see what is going on inside your child’s body in a different way, a muscle biopsy is done.
  • A biopsy helps our team see a small part of the body. They will remove a small piece of tissue while your child is asleep.
  • After the biopsy, your child will wake up and have a small spot that may be sore. Our team will teach you how to take care of it and keep it clean.

Swallow Study

  • Your doctor has decided that they need see how your child eats and drinks.
  • A feeding expert will take pictures while your child eats and drinks to see how the throat muscles work.
  • During the study, the patient will eat and drink lots of different things. The food and drinks may look different, but they will taste like they always do.

Treatment Options

Steroids

  • While on steroids, you may notice changes to your child’s body. Examples include:
    • Hungrier than usual.
    • Your child may notice a funny taste in their mouth.
    • Change in their mood.
    • Their body may also change. Such as their face becoming puffy or changes to the skin.

IV (Intravenous) Start

  • This means that your child will go to a special room where a nurse will put a small straw in their arm or hand.
  • The medicine will then go through the straw directly into their body.
  • This way of giving medicines helps our team get your child healthy much faster than with other medicines.
  • If the child is coming back for another day of medicine, they may go home with the straw or IV in place. It will be wrapped in a colorful bandage wrap.

What else is can I do to stay healthy?

  • Wear sunscreen every day.
  • Take the prescribed medicines given by the doctor.
  • Eat healthy foods.

Learn more about the Rheumatology department. 

Healio Rheumatology: Splinting After Intra-articular Injection

Healio Rheumatology: Splinting After Intra-articular Injection

by | Aug 7, 2019 | Press Coverage, Rheumatology

Patients with juvenile idiopathic arthritis who were placed in a splint to encourage rest following intra-articular corticosteroid injection, or IACI, demonstrated no significant benefit against recurrent arthritis compared with those who were not given a splint, according to findings published in Pediatric Rheumatology.
 
Heather Benham, DNP, APRN, CPNP-PC, of Texas Scottish Rite Hospital for Children, recently spoke with Healio Rheumatology about her research and if different post-care regimens impact the outcome of the injection.
 
“Steroid injections are an important part of the treatment regimen for JIA, especially those with oligoarticular JIA,” Benham says. “We don’t know if the post-care regimen impacts the outcome of the injection — response of the joint to the steroid — or the risk for adverse events — local dermal atrophy.”
 
Read the full story here.