Feeding tube placement: Some kids with hydranencephaly have trouble with feeding. These issues may caused by many reasons, including problems swallowing, sucking or reflux. When this happens doctors may recommend tube feeding. This may be done by placing a thin tube (NG tube) down the nose into the stomach, or placing a peg tube or mickey button directly into the stomach (G-tube) or intestines (J-tube)
Shunt Placement: Most, but not all, of our kids are diagnosed with hydrocephalus and have it occur to the point where pressure builds up in their brains. This can be very painful. Left untreated, hydrocephalus can cause further tissue destruction, large head growth, and can even be fatal. A shunt is placed in the brain and tubing is wired just under the skin down into the peritoneal cavity, heart, or lungs where the fluid can safely drain and be reabsorbed by the body.
Ketogenic Diet: Seizures can be quite difficult to control in our kids. Sometimes traditional medications are ineffective. The ketogenic diet is high fat, low protein and low sugar. It forces the body to burn fat for energy instead of sugar. This produces ketones and these ketones have strong effects on the brain. For reasons that are not completely understood, this ketogenic state provides excellent seizure control for a large percentage of those who try it. Close monitoring by a doctor is critical while on the diet.
Tracheostomy: Sometimes our kids have trouble with floppy airways or other obstructions. Doctors may suggest a tracheostomy temporarily or long term. In a tracheostomy, a hole is created in the trachea and a breathing tube called a trach is placed to allow easier breathing and a more durable airway.
Botox: Botox is the injection of medications directly into tight muscles to help relax them. Our kids often have stiff tight muscles that can cause problems with dressing them and their ability to move. The injections can help for several months and allow for less pain, ease of movement and less difficulty with care.
Hyper Baric Oxygen Therapy: Most people know hyper baric oxygen therapy when they think of divers. It is the tank divers go in to help them recover from the removal of oxygen from cells during deep dives. It bombards the body with oxygen and many families have seen both short and long term improvements when using the treatments. Insurance rarely covers this treatment and it can be costly.
Stem Cell Replacement Therapy: This is the introduction of basic stem cells that can reproduce into any kind of cell, to an effected area with the hopes that new healthy cells will develop. The eventual hope for our kids is that they may grow some new cerebral tissue. Some families have seen improvements with stem cell therapy. This therapy can be very expensive and insurance rarely covers the treatments.