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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
IllnessesAbout the illnesses Our Children Sometimes GetIllnesses, especially ones involving the respiratory tract are our children's biggest enemies. On this page I've included information about the infections our kids are most susceptible to and some tips on preventing or minimizing the effects of them. I asked a Dr why children with severe neurological damage are so susceptible to respiratory problems. The following is her answer: "Well, basically the respiratory problems come from several areas: 1) impaired brainstem functioning- can include aspiration during swallowing as you mention, 40% of which is silent, and it is really unknown how much can be tolerated chronically without long term lung injury- can also include lack of good deep breathing that fully expands lungs, making atelectasis or pneumonia more likely; also a poorly coordinated or weak cough can contribute. 2) GE reflux can cause laryngitis and aspiration also, and generally poor handling of secretions leads to aspiration outside of swallowing also. 3) any additional pulmonary problem may be kind of a double whammy effect- if you had great motor pulmonary function and healthy lungs to start with, you might handle the usual viral infections and reactive airways disease (asthma) etc. with usual treatment but if not, they can really cause greater problems and lead to more lung injury and poor function also. So I guess the moral is get those flu shots and investigate for aspiration and get respiratory therapy to compensate the poor expansion or weak cough, and hope this is helpful!" (Vikki Stefans, Physiatrist, Arkansas Children's hospital) Some of the more common respiratory problems our children have are: 1. Aspiration pneumonia 2. Reactive airways disease or asthma 3. Viral infections such as colds and RSV (rhinal syncytial virus) 4. Problems related to GERD (reflux)-this is explained in more detail in the links on the Feeding difficulties page. 5. 5. Respiratory complications from Influenza (flu) Prevention methods can include: 1. Yearly flu shot 2. Pneumovax: this is a once every 10 years or so vaccination that protects the child from 23 different strains of pneumococcus bacteria. 3. Investigations to rule out aspiration or reflux 4. Chest physio and suctioning are also helpful in clearing secretions from the lungs so they don’t have a chance to get infected. Cause
of lung damage and increased need for oxygen in our children Word of hope about lungs
Pneumonia and
aspiration Pneumonia Signs and Symptoms: http://www.ecureme.com/emyhealth/Pediatrics/Aspiration_Pneumonia.asp Bacterial Pneumonia
This information is
similar to the previous info on Bacterial pneumonia but is different enough that
I thought it should be included. Walking/Mycoplasma
Pneumonia Pneumonia, Pneumococcal Other Bacterial & Viral infections common in children with Hydranencephaly Pseudomonas
Respiratory Syncytial Virus (RSV) Bronchiolitis Flu (Influenza) Upper Respiratory Infection (URI, or Common Cold) MRSA Information for
the Public Immunizations - General Informationhttp://www.cincinnatichildrens.org/health/info/immunize/imm_gen_info.htmThe Importance of
Immunizations Reactions to
Immunizations Vaccine Myths RSV Protection Synagis: Pneumococcal Vaccines:
Pneumococcus (Prevnar) Pneumovax® 23
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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