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"Aerodynamically, the bumblebee should not be able to fly.
But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash

Medical Care: Treatment Facilities and Providers

Families faced with a diagnosis of hydranencephaly for their child, oftentimes become quickly familiarized with the inside walls of the nearest hospital with those individuals in white jackets and multi-colored scrubs as regular companions. A team of several specialists is an early addition to the child's primary care physician and/or pediatrician.

The most valuable players on the team most often include, but are not limited to:

Developmental Pediatrician: specialized treatment and assessment for children with developmental delays

Ear, Nose, and Throat or Otolaryngologist/Otorhinolaryngologists (ENT): any conditions associated with ears, nose, and throat: apnea, swallowing, etc.

Endocrinologist (ENDO): in cases that hormonal concerns arise: diabetes, thyroid, growth, temperature disregulation, precocious puberty etc.

Gastroenterologist (GI): to manage constipation, feeding issues, reflux, delayed gastric emptying, and any other complications with the stomach and/or intestinal tract.

Home Health/Hospice: care in the home for those needing long-term nursing care; hospice for terminal patients. Provide additional resources such as general care supplies, counseling, bereavement, and spiritual support.

Neurologist (NEURO): this is a must as hydranencephaly is a neurological condition; addresses associated symptoms such as seizures, autonomic response, sleep disturbances, and more

Neurosurgeon (NSG): may not be necessary in many cases, unless shunt placement for hydrocephalus becomes concern

Ophthalmologist (OPTH): for obtaining eye glass subscriptions, development of vision therapy services, and general health of your child’s eyes

Orthopedics (ORTHO): combat bone concerns; most often with hips and legs; positional obstacles

Physical Medicine/Rehabilitation or Physiatrist: obtaining braces, orthotics, and therapeutic services; also durable medical equipment such as bath chairs, mobility devices, etc.

Pulmonology (PULMO): for management of respiratory issues, often recurrent pneuomonia, brochitis, asthma/reactive airway disease

Physical/Occupational/Vision Therapy and Speech & Language Pathologist (PT/OT/VT & SLP): provide you as the parent with the additional care directives to assist your child with achieving a higher level of development in these areas, SLP is especially helpful with feeding concerns

Chiropractor, Massage Therapist, other Therapies classified as alternative: extensive research and personal evaluation has suggested the most beneficial approach to achieving a higher level of health and development is achieved through the addition of alternative care options. Learn more in our Natural/Alternative Care section.

Open-minded, optimistic, compassionate doctors are difficult to discover. It is crucial to your child's level of health, as well as your own sanity, to find a doctor who shares your desire to provide your child with essential preventative care and treatment of associated symptoms. While most would believe that doctors have no other choice than to value your concerns as a parent and value your child's life, that is unfortunately the most common mentality held by doctors upon initial examination.

Due to the terminal prognosis of this condition, minimal care is provided and lesser is encouraged in many cases. While families are fully aware of the possiblitiies that exist for these children, most doctors have only briefly chatted or read about the condition without ever having another patient with the diagnosis, even if they have many years of experience under their belt. With a prognosis listed in medical text stating "death generally occurs within the first year..." it is difficult to envision anything beyond that statement when you have your whole faith in his college degree prgogram, despite the research suggesting that majority of childen far exceeding that expiration date.

Keep in mind, you are hiring this doctor to be your partner in creating the most appropriate care plan for your child. If you disapprove of the care he or she is receiving, or the two of you are not in agreement on the level of care he or she deserves for whatever reason, you can fire them as you could any other employee. Most families find they have to travel through several doctors prior to finding the perfect match for them.You must remember that you are ultimately in charge of your child's care, you are their voice and biggest advocate, and should always be prepared with organized information to include in review, especially with new doctors. Even established carers should regularly review your records to ensure all those on the care team have accurate information and are on track to effectively assist with best caring for your child. The information you maintain and include when attending appointments (keeping your files on the computer for ease-of-use and quick updating capabilities, then printing as necessary to present to the doctor, is an ideal solution for this):

a list of all current medications, with dosage schedule, and discontinued medications with pertinent information regarding it's history of use (reason for prescription, discontinuation, any side effects or questionable reactions) Do not forget to include vitamins and supplements in this list as they can have an affect on medications taken or sypmtoms presented.

  • list of allergies
  • list of treatments received in the past and currently receiving
  • list of other doctors your child sees, primary reasons for care, and contact info for them
  • list of hospitalizations and surgeries, to include dates and details of procedures and recovery
  • list of symptoms/progress related to your visit, do not leave anything out since those
    minute details often hold the solution you are searching for
  • list of any questions you may have or anything you want to discuss, maintain this on record for future reference

Your doctor should take the time to address concerns and explain their findings with you. They should also take the time to interact with your child and thoroughly examine them. If the doctor makes you uncomfortable or seems uncomfortable with you or your child, especially if they do not interact with your child but instead simply as you questions and determine a care plan without a physical evaluation, they are probably not the best doctor for your child.

Medical Treatment Facilities:

Generally, the best recommendation is to have an affiliation with your nearby children's hospital since they are specialists in their particular area of care, as well as in children specifically. They also can easily work together as a team with various specialists, without the complications of communication barriers between care facilities and record transfers. While some families find effective care in smaller local establishments for some concerns, most families eventually find a much greater level of consolidated care once they have chosen to switch to a children's hospital.

The most important fact to remember is to never back down from anyone when it comes to the care you want your child to receive. Some circumstances will prompt urgent decision-making and you will want your care team to be on the same page as you are when making those quick decisions. You should never feel intimidated or bullied by a care provider who is refusing to keep your child's best interest as priority.

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