Dental & Nutrition Workshops- 2013 Orlando FL Costello Conference

Again these are my personal notes… they will eventually be up more professionally on the CS website I am sure in the near future.  This is my way of organizing my own self and if it helps anyone else, fantastic.  If you want a copy of my notes from Microsoft Word please message me personally.

Dental by Dr. Skip Dolt, DDS “RASodontis”

  • Anodontia- missing teeth
  • Palate shaped like a V instead of U, jaw shape (can cause crowding of teeth)
  • Delayed tooth eruption
  • Malocclusion- open bite (common in general population from thumb sucking and pacifiers)
  • Not much information on Costello specific dental studies.  But there is information saying CS has thinning tooth enamel in 84%

 

Challenges to CS teeth:

  • Reflux
  • Oral aversion
  • Mouth breathing
  • Difficulty chewing
  • Hypotonia
  • Delays in tooth eruption (zane has) & skeletal growth

 

Best method for helping them brush their teeth is to put them in a head lock type stance instead of facing them and coming at them

 

Prescription strength fluoride over two years old (under 2 they will probably swallow their paste instead of spit it out)

  • Floss first
  • Tooth enamel dissolves below 5.5 ph (Avoid Sugar, especially in beverages) Water is a 7ph, Apple Juice is a 4 ph
  • Saliva takes 45 minutes to buffer out the sugar.  He suggests if you drink a sugary beverage drink it in one sitting instead of sipping over 45 minutes because then the sugar sits on your teeth for a much longer time
  • Gum- buy gum containing xylitol artificial sweetener
  • Brushing routine early
  • No fluoride in toothpaste until age 2
  • Eliminate night sugar
  • Early flossing of tight contacts
  • Tap water is a good thing
  • Electric Toothbrushes are better for kids with delay in motor skills
  • You can also cut a hole in a tennis ball, put the tooth brush through the hole to make it easier for them to hold the toothbrush
  • When you visit the orthodontist make sure to bring the Costello Growth Chart & if you have your own personal growth chart bring that too

 

Nutrition :

Dr. Sara Karjoo , gastroenterologist (possibly interested in studying Costello GI)

G12A & G12C more severe GI issues

Causes of feeding issues:

  • Malrotation?
  • GI Motility?- more studies need to be done
  • Hypothyroidism
  • Growth Hormone deficiency
  • Cardiac issues
    • Breathing
    • CS are initially large for gestational age
    • Loose a lot for weight within first days of life
    • Slow growth, severe feeding difficulties
      • Short stature
      • Obtain Speech, Physical and Occupational Therapy
      • Work with different textures of food, drink
      • Observe feedings
        • Barium Swallow study

Medical causes:

  • Allergy
  • Reflux
  • Anatomical Problems
  • Endocrine
  • Autoimmune conditions
  • Motility disorder (can be tested)
  • Malabsorption

Side effect of reflux meds are calcium deficiency and bone health if on them for 2+ years

Suggestions:

  • Impedence pH probe to find acid and non acid and when & at what level they are having symptoms (looks like an NG tube they wear during test… to test Reflux/GERD)
  • Bravo probe- requires sedation and endoscope
  • Keep a food diary
  • Trial supplements
  • Choose foods with higher calories
    • Weight check every month
    • Pediasure, Boost (over 1)
    • Scandishake (By Mouth) (can mix in cookies, muffins, breads, etc)
    • Benecalorie- liquid I believe she said is 44mL = 300cal (for volume control)
    • Concentrating formula (mixing regular formula to create 22, 24, 27 calorie mixes)
    • Duocal (40cal per scoop)
    • Oils/heavy creams
    • Microlipids/MCT oil
    • Orgain kids- Organic pediasure

Signs of Allergy- vomiting, bloody stool, irritability

Blenderized diets- work with a nutritionist (make sure they’re getting enough calories, fat, protein, vitamins, etc to grow)… getting enough free water, reach fluid needs daily

Constipation- fiber should be 20-30grams per day.

  • Consider probiotics (lactobacillus – this is what is naturally in your body.. safer for kids with heart conditions, VSL3, Culturelle)
  • Consult doc for laxatives (miralax, laculose)
  • Get a DXA Scan to monitor Vitamin D & Calcium every year (osteopenia)
    • Take a multi vitamin

There is limited info on Costello and GI

Two things found:

Have excess oxidative stress that places patients at risk for cancer and other symptoms

Antioxidant therapy was developed after clinical observation of a child with Costello.  Improved after patients supplemented his therapy with Potassium ascorbate with ribose (PAR).  Study by Anchini et. Al.

HOWEVER…. The safety of this is unknown… 4 kids were tested and one died.  The condition of the one who died is unknown… could of died from other multiple organ system issues.

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