Among the shared observations many parents notice but is still a mystery is that our kids are "hot-blooded." Whether it's the metabolism or the heart issue (both can cause a person to be hot all the time) or something else, or all of the above, our kids appear to sweat a lot ? even to be a bit "ripe-smelling." Some children experience unexplainable fevers
Many parents notice their child is very sensitive to sunlight and touch, particularly the hands and feet.
Most parents talk about difficulty sleeping through the night. Many grow out of it, but many don't.
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THE GASTROINTESTINAL SYSTEM
This system is just about always involved, and some kind of intervention is required. This is, by far, the most chronically difficult issue for our families. Families outside the USA and Canada tell of spending time in the hospital every couple of months or so, with NG (nasogastric) tube feedings and iv.'s for dehydration. Others feed their children via NG tube at home.
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In the US particularly, we have a high number of g-tubes (gastrostomy tubes - they go directly through the stomach wall for feeding either by "bolus" (pouring in the formula or meal in one sitting) or timed drip-feeding (requiring a pump, often scheduled for overnight feeding)). Some children have a surgical procedure, a Nissen's fundoplication performed (where a surgeon puts an extra fold in the esophagus just above the stomach to help reduce reflux). But for some children, the "fundo" is not appropriate. Our children tend to need more calories too. |
| The good news is that the feeding issues usually resolve themselves somewhere between the ages of 2 - 8 years old. There are a few cases where the child will clearly be a g-tube-fed person for life. There are also a few cases where the child never had an eating problem!
Many children have difficulty with constipation. All do better with more fluids, but it's hard to get a child - any child? to drink enough! If your child is having trouble with constipation even with what the doctor can prescribe, you may find some useful suggestions on our website's Frequently Asked Questions (FAQ) section. |
ORTHOPEDICS
Hips and ankles are involved so that sitting and walking will be delayed. Several children have wheelchairs to help them get around school, which over time have been replaced with walkers. (They have little protection reflex if they fall.) While his protection reflex isn't the greatest, one boy loves to play basketball and ski -- unassisted!
Many children wear ankle-foot orthotics (AFO's or DAFO's), and have their Achilles tendons "released." Hip tenotomies (tendon-releasing surgery) have also been performed on several children, with generally good success. A few have had hip reconstruction surgery.
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Most kids have trouble straightening out their elbows. In Australia, the description of the arm position is called "kangaroo arms."
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 Most kids' hands (and feet) have lots of loose skin (cutis laxa), are very flexible, and tend to turn away from the midline (ulnar deviation - towards the ulna bone in the forearm). The flexibility makes it hard for them to build fine-motor strength in their hands.
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