Advice for my past self on managing my daughter’s medical journey

It started as a simple question on our car ride home. “If you had a time machine, where in time would you visit and why?” The answers included typical kid responses — dinosaurs were mentioned — but my 11-year-old daughter Amelia’s quick statement made me catch my breath. She said she would travel back in time and tell me she had Friedreich’s ataxia (FA) so I wouldn’t have to work so hard to figure it out.

When Amelia’s health took a turn for the worse when she was 5, no one showed up with a book providing insight and guidance like they did when I was pregnant. I felt so lost.

So let’s say I have that time machine and can momentarily go back to talk to myself about the medical journey ahead. What would I say? I made a list.

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Your well-being matters

1. Make a list of the mundane. You will find yourself in many hospital rooms, so safeguard your well-being. Going over all of Amelia’s symptoms, medical conditions, and supplements on repeat is too much. And yes, more medical conditions are coming. Write them down in a document and update it as needed. Print it out before appointments and hand it over to intake nurses. You will forget to do this once, so put the list on your phone as well.

2. Carry things that make you smile. Keep all the medical notes from appointments in a notebook — you need to be able to physically hold it — and buy pretty notebooks and nice pens because it will help to ground you. Also, you have two notes coming from friends. Keep them in the notebook as a reminder that you are not alone.

3. Ask for help. You are not the best at letting others care for you, but appointments are hard. If you can have someone make dinner, watch the kids, or do something else helpful, please ask.

Their well-being matters

Amelia will be in a lot of clinics for the rest of her life and her sister will be watching. Your job is to think intentionally about keeping traumatic events down as well as modeling healthy behaviors.

1. Invest in numbing cream. All hail prescription-strength lidocaine! Call your doctor and get it now. It will be the difference between tears and comfort during blood draws. You can get lidocaine in the form of Icy Hot at any pharmacy, but the prescription stuff is worth the effort. Follow the instructions given to you, but instead of using Band-Aids that hurt sensitive skin, wrap Amelia’s arm in kitchen plastic wrap. Then tell her that she’s leftovers and tickle her.

2. Ask for Buzzy Bee. When Amelia’s neuropathy or injections hurt, a cheap massager does the trick. It is a staple with travel. Ask for a Buzzy Bee next time there is a needle involved. Most children’s hospitals have them; know what they are and why they are important.

3. Hydrate. You will struggle to get enough blood from Amelia for lab work. Starting 24 hours before blood draws, set a 30-minute timer for her to drink and allow for things that are generally not permitted, like lemonade or Gatorade. Push fruit with a higher water content as well.

4. Have fun! FA steals so much; don’t let it take the laughter. Do special things during and after medical appointments. There is an insane ice cream place near the hospital in Philadelphia (yes, you will be going out of state for medical care) for after Amelia’s clinical visits. Her treat is half the size of her body. She eats probably one-tenth of it, but it is the thing she remembers. Toss the ice cream when you’re done, but keep the jars — she loves them.

The hospital bag

Get yourself a dedicated hospital book bag! Have it prepared with things you need and can grab in an emergency. Here are the essentials:

• The printed list of all medications, supplements, diagnoses, and symptoms
• Snacks
• Numbing cream
• Activities
• Spare headphones
• Medical notebook.

You will be terrified at times, but remember to breathe. There is a community of others impacted by FA. Find them. Amelia is going to fall in love with Darth Vader, which will also be hard (we know how you feel about him). Let her get that expensive Vader costume; it will be worn a ton, including during her hospital visits. Don’t overthink buying the matching shirt. It will be a hit.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.