A Tiger Mom’s Guide for Sudden Hospitalization for a Child with a Rare Disease

If you’re like Lynn Nezin, you’re ready to battle for your child, especially if they have to suddenly go to the hospital for something related or unrelated to their rare disease. Lynn’s son, Casey, was born with Glycogen Storage Disease Type 1A, also known as Von Gierke’s Disease.

Here is what Lynn has learned:

1. Be prepared, if necessary, to challenge the house staff

If the hospital’s treatment plan raises your concerns, be prepared to challenge the hospital physicians. Many physicians appreciate that parents of a rare disease child are often more knowledgeable and experienced with the disease, but egos can interfere.

2. express your concerns or disagreements through gratitude

Try to remain civil and consider prefacing any of your concerns or disagreements by expressing gratitude for the care they have been providing for your child. Raise your questions and concerns as politely as possible.

3. Offer snacks to the nursing staff

Bring along snacks and treats for the nursing staff, as nurses are important allies and always appreciate any gesture of recognition.

4. Always be prepared

Have the following ready to bring along to help you and your child during their stay:

a. For the hospital staff

Documentation of medical history, especially any regimens both for sick days and general care

Admission instructions from primary physician, signed and preferably laminated

b. For your child

Comfort toys for your child, if possible your child's favorite bedtime toy (taking into consideration potential hygiene restrictions)

Story books
Depending on the child’s age, computer games
Favorite snacks (if permitted) for the child
Computer games on cellphone (e.g. Wordle, Scrabble, Solitaire,...)

c. For you

Notebook and pen to keep track of interactions with house staff, medications ordered and administered, test results

Blanket and pillow for parent planning on staying in room with child during hospitalization
Toiletries for parent (toothpaste and brush, hairbrush/comb, facial wipes, deodorant)
Clothing (underwear, clothing comfortable to sleep in, e.g. sweatpants, t-shirts, sweatshirt)
Phone charger
Water bottle for parent
Parent medication (any prescription medications, OTC pain, sleep, digestion products such as Tylenol, Advil, Pepto Bismol, Pepcid, Melatonin, etc.)
Easy reading book for parent ( e.g. good vacation novel, mystery, etc)
Energy snacks for parent (e.g. nuts, dried fruit, protein bars)
Sleep mask for parent
Headphones for phone
Music on cellphone (e.g. Spotify)
Knitting materials if this is something parent enjoys