Chemo Induced Peripheral Neuropathy with Restless Leg Syndrome

We noticed a few weeks ago that Lulu was kicking her legs & tossing and turning in her sleep. Reminded me of when she was younger & throwing tantrums, but she was dead asleep. After a night or two of this I started asking around on other ALL blogs. One recommendation was checking her magnesium levels, but those turned out ok.

Here's an explanation I found that best describes what's happening to her body.

"The chemo does not actually damage the nerve endings, but rather kills the "lining" or "insulation" around the nerves, so that they are sort of "raw," similiar to a power cord having an exposed section.  It is literally those small nerves "shorting out" between one another.  This usually effects mostly the "digits," or finers and toes, and goes from there. "

You know that test they do in the doctors office where they tap the knee. Well tapping Lulu on the knee gives zero results. If there is no response to the knee tap, it indicates nerve damage. She has peripheral neuropathy. This is a result of the chemotherapy she receives. How to prevent permanent damage, I have no idea. I'm all about short term relief.

Here's the cocktail we've been doing with Lulu and seeing positive results. Use at your own risk. I'm no MD, just a mom trying to help my kid naturally.

1) Lavender infused almond oil. I bought some lavender at Sprouts and mixed 2-3 drops with 2 oz of almond oil. I massage Lulu's feet nightly. Sometimes it can put her right to sleep.

2) Baking soda & epsom salt bath. I pour about 1/2 cup baking soda and 1/2 cup epsom salt in her bath 3-4 nights a week. I added this after reading this blog.

3) Water with lemon. Lulu prefers water with lemon juice, so this was an easy one for us. We recently spent a week in the hospital because Lulu had a fever. She wouldn't be released until her ANC fully recovered. In order to get the nurse to turn down her iv fluids I had to have Lulu drink 8 ounces of fluids every 2 hours + food. This was on a 8am-8pm schedule. Seems like a lot, but it's what was needed to keep that iv fluid down. Whatever it takes to get out of the hospital! We were given these awesome magnetic dry erase boards and now keep a food & water log throughout the day. Highly recommend if you have to constantly encourage eating & drinking throughout the day.

4)Personal trainer. After discussing with the doctors Lulu's muscle and weight loss she put in a referral for physical therapy. Lulu was struggling climbing up the stairs. She would favor one leg and still bear hug the hand rail all the way up & down. In addition she fell down a few stairs which scared the heck out of us. She was a very active girl prior to her dx. She completed at 5k mud run last summer, so seeing her struggle with simple tasks was heartbreaking. For the last few weeks she has been doing 45 minutes of training, once a week & seeing great results. I highly recommend & well worth the extra money. Her confidence has increased and she is now able to walk up the stairs without assistance. Lulu is enjoying is too and you'll find her doing exercises on her own at the house & giving daddy a few workout tips ;)

Hope these are helpful !