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The prognosis for a child with hydranencephaly is very poor, with death usually occurring in utero, within weeks after birth, or no longer than 1 year. The longest known survivor lived to 33 years old. Treatment is supportive and focuses on maintaining quality of life by managing common conditions like spasticity, seizures, visual and hearing impairments, hydrocephalus, feeding issues, and ensuring caregiver support. While there is no cure for hydranencephaly, treatment aims to address symptoms and complications.
The prognosis for a child with hydranencephaly is very poor, with death usually occurring in utero, within weeks after birth, or no longer than 1 year. The longest known survivor lived to 33 years old. Treatment is supportive and focuses on maintaining quality of life by managing common conditions like spasticity, seizures, visual and hearing impairments, hydrocephalus, feeding issues, and ensuring caregiver support. While there is no cure for hydranencephaly, treatment aims to address symptoms and complications.
The prognosis for a child with hydranencephaly is very poor, with death usually occurring in utero, within weeks after birth, or no longer than 1 year. The longest known survivor lived to 33 years old. Treatment is supportive and focuses on maintaining quality of life by managing common conditions like spasticity, seizures, visual and hearing impairments, hydrocephalus, feeding issues, and ensuring caregiver support. While there is no cure for hydranencephaly, treatment aims to address symptoms and complications.
The prognosis for a child born with hydranencephaly is
presented as very poor.
Death in utero, within weeks, or no longer than a year.
The oldest individual with a confirmed case of
hydraencephaly celebrated his 33rd birthday before his passing. The survival of the patient is related to the integrity of the brainstem, which regulates vital aspects, such as temperature, blood pressure and cardiorespiratory function.
For the child with hydranencephaly who survives,
there is debate as to whether or not to perform any treatement, considering the severe brain impairment. There is no definitive treatment for hydranencephaly.
Treatment is symptomatic and supportive. Conditions
are treated to ensure the best quality of life possible. Common Conditions That also often Correlate with a Diagnosis of Hydraencephaly ASTHMA/ REACTIVE AIRWAY DSE CEREBRAL PALSY
Common in children with Assess ROM
hydranencephaly. Hip or spine radiographs as Treatment is similar to any indicated child with asthma. Neurologist and Rehab Medicine Spasticity
Virtually all children with hydranencephaly have
some varying issues with tone.
Most common is stiff tone
Physical therapy Physical Therapy
MAIN PURPOSES
1. Maintain or improve function of all limbs
2. Prevent deformities and contractures
3. Help the child be comfortable as possible
4. Help them learn to play and have fun
Physical Therapy
COMPONENTS
1. Preventing deformities by doing ROM exercise (stretches)
2. Splints, braces to maintain a good position in each of the limbs
3. Teaching how to position your child to prevent deformities and to maximize
comfort. This is done using a wide variet of pieces of equipment.
4. Using different methods such as hydrotherpay and massage to relax tight
muscles and improve function.
5. Using medications to reduce spacticity.
6. Surgery to prevent or repair damage from spacticity.
voices and loved music. Enjoy looking things that are bright and contain high Audiologic assessment contrast. Refer to ENT/ Audiology Refer to Ophthalmology Hydrocephalus
VENTRICULOPERITONEAL (VP) SHUNT
To drain the CSF, reducing the cerebral tension and the
increase in the cerebral volume. Hydrocephalus
CHOROID PLEXUS COAGULATION
To treat hydrocephalus in hydranencephaly
CPC + Endoscopic Third Ventriculostomy may
increase the shunt independent rate, preventing the late complications related to the shunt device. Hydrocephalus
CHOROID PLEXECTOMY
Removal of the choroid plexus from the lateral
ventricles. Seizures
Reflect subcortical networks or represent non-epileptic
brainstem release phenomena. Thermoregulation
Compensate with removal or addition layers of
clothing, or use of hot or cold packs. Feeding and Nutrition
Assess per well-child practice guidelines
Plot weight, length, and OFC
Maintain weight-length ration at 5-50th percentile
Review drug-nutrient interaction
Assess feeding and swallowing skills
Consider nutrition consult
Feeding and Nutrition
REFLUX DYSPHAGIA
Common in children with Special bottles
neurological issues. Special hold Antacids Food or liquids thinned or Feeding at least semi- thickened to specific upright. consistencies. Feeding and Nutrition
CONSTIPATION
Increasing fiber in the diet
Medications Caregiver
Anticipate familys needs
Sleep issues for the child and caregiver Acceptance/ Understanding of the diagnosis Refer to support groups, respite care, information, and financial resources. Emotional issues Lifestyle changes for the family and safety issues. THANK YOU