Erin’s Medical Issues

GENERAL INFORMATION:

- Erin is 5 years old and was born in August, 2005.

- Erin has Fibrodysplasia Ossificans Progressiva, more commonly referenced to as FOP.

- FOP is caused by the mutation of a single gene. A person with FOP develops soft tissue swellings, and over the course of a number of weeks, bone replaces muscle, tendon, or ligament tissue within the swelling.

- FOP is progressive over the years, beginning in the head, neck, shoulders and trunk, and later moving into the arms, legs and jaw. Muscles unaffected by FOP are the heart, diaphragm and facial muscles (except for the jaw).

- Through multiple flare-ups of the condition, joints eventually become partly or fully fused in place.

- Flare-ups can be caused by even minor physical traumas. Exposure to the influenza virus can also trigger flare-ups. Many flare-ups, however, have no known cause.

ERIN’S SPECIFIC LIMITATIONS:

- Erin cannot move her neck in any direction. When she turns her head to look, she’ll either just move her eyes or move her entire trunk. We are unsure what percentage of her neck is fused but regardless she will not be able to move her neck at all.

- Erin’s both shoulders are partially fused. She can move her elbows but are limited in how far she can reach down, up, or out. She needs help picking up things off the floor or reaching for items out of her reach. She is unable to raise her hands.

- Erin’s back is very ridged. This may prevent her from sitting in a chair. At home she can sit on the child IKEA stools. They are about 11” high and currently that is perfect height chair for her. She sometimes prefers to kneel or stand if we are doing an activity at the activity table (table height is approximately 19”).

CARE AND PRECAUTIONS:

- The most important thing is to avoid falls and other impacts to Erin’s body. Try to prevent tripping by making sure she has a clear path to walk, and also make sure she is not walking over an extremely uneven surface.

- Since Erin cannot twist her trunk and neck and brace falls with her arms, she has a tendency to take impact of falls to her forehead. Erin should wear the helmet or head gear she wears to school at all times. Erin will need to have the helmet off during transportation since it interferes with her sitting comfortably in the car seat. She is currently getting used to the pink helmet. She will wear it most of the time without any complaints. Once it comes off, she won’t want it on again.

- Erin should not play aggressive running games (i.e. tag). She can play on the playground but someone must watch her. Low and slow slides are okay if they have aren’t steep and if she can stop safely on her own at the base of the slide. She cannot sit on a sling swing seat. The limitations in her shoulders and back prevent her from being able to hold herself upright. Bucket swing seats are better. She has tolerated those in the past but we haven’t tried swings since July. We want her to participate and do kid things, however she requires adult supervision.

- Erin must wash her hands before eating, however she is unable to run her hands under a running faucet because of her shoulder limitation. First washing her hands with soap and water with a paper towel is fine. Then follow up with anti-bacteria hand sanitizer is ideal.

- Erin is not potty trained yet. She’ll attend school with an overnight pull-up. I can send extras of whatever the teachers require.

- Erin needs help putting on her jacket. I recommend starting with the right arm and then the left arm.

- Erin needs help putting on her shoes if they should come off.

- Erin needs supervision walking up or down stairs. She will let you know if she needs to hold someone’s hand. I try to allow her as much independence that she wants; however an adult needs to be with her as she navigates any stairs.

- Try not to force the movement of any of her limbs.

MEDICAL TREATMENT:

- If Erin falls or otherwise take an impact to her body hard enough for her to cry, use a cold pack directly on the affected area for 20 minutes. She will probably protest.

- Erin is constantly on 6.8 mL of Naproxen. She is in an “active phase” with her FOP. There will be flare-ups and the Naproxen helps with the pain and swelling. We will administer the medication at home. The school will not need to give her any medication. The Naproxen may make her drowsy.

- Erin may take Prednisone for future flare-ups but the school will not need to administer any medication. We will do this at home. Prednisone may make her drowsy as well.

- Erin is wearing a medical identification bracelet. If any injuries come up, you can call Medic Alert.