If you think your child is suffering from one of these conditions or have more questions, please consult your doctor.
Hydrocephalus is the build up of cerebral spinal fluid in the brain. Most of our children are diagnosed with hydrocephalus. Many, but not all, of our kids have shunts. A shunt is placed in the brain with tubing that runs into the peritoneal cavity, heart, or lungs to allow the fluid to drain so it does not build up and cause pressure in the brain.
Seizures Many of our kids have seizures. They experience many different types of seizures, some of the most common being staring seizures, absence seizures, and tonic clonic seizures (convulsions). It is common for many of our kids to have seizures that never show up on an EEG. It is believed that some of our kids' seizures start in the brain stem as many have little or no cortex. Many doctors refute that theory, yet we have kids with no cortex that have documented seizures. Some seizures can be difficult to detect. These are videos of some of the seizures experienced by our bees.
Reflux is when stomach acid comes back up into the esophagus. It is very common in children with neurological issues. Many of our children experience at least some degree of reflux. Some children respond well to antacids or acid reducers. Something else that is helpful is to remember to never feed your child laying flat and to keep them at least semi-upright for awhile after eating as well. Reflux is especially troublesome if the reflux occurs all the way up to lung level. It can cause lung irritation and in children who aspirate and/or have other swallowing issues can find the acid actually getting into their lungs causing pneumonia. Reflux can also cause ulcers in the esophagus and stomach. Sometimes medication and other strategies are not successful and surgery can be successful in stopping/reducing reflux.
Dysphagia means swallowing problems. Swallowing is a complicated process and our kids often have trouble coordinating proper swallowing. Special bottles can help. Sometimes therapists can help with strategies such as holding the bottle or child in a specific fashion or sometimes food or liquids can be thinned or thickened to specific consistencies to aid in easier swallowing. Sometimes improper swallowing can result in food going into the lungs and pneumonia can result.
Tracheomalacia and Laryngomalacia mean floppiness in specific areas of the airway. Sometimes children outgrow the floppiness. Sometimes they can mean breathing difficulties.
Asthma/Reactive Airway DiseaseThis is quite common in our kids. Treatment is similar to any child with asthma. Inhalers or nebulizer treatments are often used. Sometimes on a daily basis and sometimes only when the child is sick. Asthma causes breathing difficulty. Triggers such as allergies, irritants or illness cause the lungs to become sensitive, inflame, or over-react. Medications can be very effective. Manhy of our children use other machines to help with their lungs. Because our children are not generally as active as they should be, getting secretions out of their lungs is difficult. A "vest" can be very helpful. It shakes the body around the area of the lungs and assists the child in working mucous out of their lungs. A cough assist machine can help the child create a productive cough to get the secretions completely out. Any concerns you have with your child's breathing or airway should be discussed with your doctor immediately.
Sleep Apnea is when someone stops breathing during sleep. There are two main types of sleep apnea. One is called "central apnea". This is when the brain literally forgets to tell the body to breathe. The other type of sleep apnea is called "obstructive apnea". This is when something in the mechanics of breathing isn't working properly causing a blockage. It is usually caused by airway collapse. The airway collapse can be from overgrown tissue such as adenoids or from just a floppy airway. Sleep apnea is usually diagnosed from a sleep study. The apneas are carefully documented. It is determined if they are central, obstructive, or quite often a mix of the two. A few apneas are generally considered normal but once they get over a certain number or severity, they are considered to be sleep apnea. Treatment can be with just oxygen and the use of a monitor such as a pulse oximeter. Or treatment can be with a cpap machine or bipap machine. If the apnea is very serious, or treatments don't work, there are surgeries that can help. In fact often the first course of action in children, including our hydran kiddos is the removal of adenoids and tonsils. Enlarged adenoids and tonsils is the leading cause of sleep apnea in children.
Cerebral Palsy is a complex diagnosis that encompasses various problems with the messages between the brain and muscles. Our kids generally qualify for CP diagnosis.
Cortical Vision Impairment Our kids are often legally blind. However even with what our kids can see, we are not sure exactly how they process it. The problems associated with the brain and how it interprets sight are magnified by the fact that are kids are missing so much of their brain tissue. This problem with processing what they see is the definition of "cortical vision impairment". What we do know is that most of our kids really enjoy looking at things that are bright and contain high contrast.
Cortical Hearing Impairment Even though most of our kids seem to have average hearing, it is unknown exactly how they process what they hear and if it is processed correctly. These problems are called "cortical hearing impairment". Most of our kids seem to respond well to familiar voices and love music.
Temperature regulation takes place in the brain and if that area is damaged or missing, the body can have trouble regulating the proper temperature. Some of our kids have no trouble with temperature control at all. Some of our kids run too cold, some too hot and some fluctuate back and forth. Often if our kids start to get too cold or too hot, the body doesn't help compensate and the body temperature can rise or drop dangerously fast. Also many of our kids run low with their normal body temperature. Some have a normal body temperature in the lower 90's such as 95 or even lower. Thus if their temperature reads at 98, that is considered a high temperature and illness indicator for that child. Our parents quickly learn to compensate with lots of light layers, ponchos that can be pulled off quickly while inside or in the car, heating blankets, hot or cold packs, etc.
Constipation is very common in children with hydranencephaly. It is when the child has difficulty having regular bowel movements. It is common in children with neurological issues and often made worse by some of the medications our children take such as seizure medications. There are many diet and medication treatments available that can help. Increasing fiber in the diet can help.
Scoliosis and other spine deformities are common in children with hydranencephaly. They occur when the spine curves over time instead of staying straight. Interventions such as therapies, massage, and surgery have helped many families.
Tone, including floppy, tight and "mixed": virtually all children with hydranencephaly have some varying issues with tone.
Most common is stiff tone. Their legs, arms, and sometimes entire body can be very stiff and difficult to move around. This can make daily care difficult. Therapies, massage, and medications can help a great deal.
Floppy tone is when the child has almost no tone at all. Many parents describe it as almost like a rag doll. This can make movements for the child very hard to accomplish. It can also make daily care difficult. Therapies, and massage can be helpful to improve tone.
Mixed tone is a mixture of some sort of the two tones. It can be varied from child to child. Some have floppy arms and stiff legs, or are floppy all over at times and stiff all over at times.