My Diet & Medications

 

Important Notice

In no way do I assume responsibility for medical or legal aspects of what I am presenting on this website. This is what works for MY daughter. You and/or your health care professional must take the responsibility for decisions made from the information presented on this website.

 

At one month old, Karah was diagnosed with acid reflux. This was well before we knew about SMA.
Like many SMA children who suffer from severe AR, we are continuously revising Karah's diet seeking what works best for her at that time. Karah is very volume sensitive and also has slow motility, something common for many SMA children. Our pursuit to study SMA diets has become a priority and I love when families publish their child's diet so we can compare and also forward information onto our Nutritionist.  

 

Diet Information


In late Nov. 08 Karah switched to a GJ tube due to her uncontrolable vomit/reflux episodes. Her nissen was determined thru an EGD this past Oct 08, not to be in tact. So in order to ensure Karah's lungs stay healthy due to any GI related lung pneumonia's, we opted to do a GJ placement until further consideration of surgery happens and when it is a safer time to consider surgery! Here are her changes diet wise.

Currently Karah is being based on 120ml per kilo. Her current weight is 8.6kg for a total of 1032 ml per day.

Current Diet is as follows: Mixed as a full 24hrs

  • 1pack Tolerex + 3 TBSP

  • 13oz Water

  • 8oz Colored PediaLyte

  • 6oz Rice Milk

  • 4oz 100% White Grape or Pear Juice

  • 3oz 100% Prune Juice

  • 2 tsp Safflower Oil

  • 1-1/2 tsp Primadophilus

  • 1-Multi Vitamin (Centrum Kids Complete)

  • 1-1000IU tablet Vit D3

  • 1-TUMs Tablet

  • 150mg CoQ10

Additional water flushes are given thru the day: approx 60-80ml over 15hrs
Day Rate is currently at 51ml per hr
Night Rate is 47ml per hr

 

Medication Information


List of Karah's Medications:

Zantac15mg/ml (75mg/5ml)  2ml TID, Given  @ 9am, 5pm, and 12:30am thru the J
LevoCarnitine 10% oral solution 2ml TID, Given  @ 9am, 5pm, and 12:30am thru the J
Miralax 7.5grams (approx 1tsp) QDay, given at 10am mixed w/ 3oz of her food thru the J dispensed over the set rate by pump over approx 2hrs
Mylicon/Simethicone: we eat, sleep and breath mylicon and are considering taking stock in the company!

We have also tried Prevacid Compounded and Solu-Tabs: Neither worked for Karah and actually increased her reflux within days. We are currently in the process of seeing GI for a follow up for further studies and potential options.