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

For the hospital staff

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

• Admission instructions from the primary physician, signed and preferably laminated

For your child

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

• Storybooks

• Depending on the child’s age, computer games

• Favorite snacks (if permitted) for the child

• Computer games on your cellphone (e.g. Wordle, Scrabble, Solitaire,...)

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 the room with their child during hospitalization

• Toiletries for parents (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 parents ( e.g. good vacation novel, mystery, etc)

• Energy snacks for parents (e.g. nuts, dried fruit, protein bars)

• Sleep mask for parent

• Headphones for phone

• Music on cellphones (e.g. Spotify)

• Knitting materials if this is something parent enjoys

You should not hesitate to ask questions or speak up about anything you feel the hospital staff should know about your child.

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