About this topic
DiGeorge Syndrome is caused by a problem with your babys chromosomes. This happened before your baby was born. This causes some body systems to not develop as they should. Your baby may have problems with: ‚
- How their heart develops
- Their ability to fight infections
- The calcium level in their blood
- How the roof of their mouth develops
- Delayed development
- The position and look of their ears
- Heavy eyelids
- Underdeveloped chin
- How their brain works
Your baby's care depends on the signs your baby is having. Your baby will need to see many experts. ‚
What care is needed at home?
- Ask your doctor what you need to do when you go home. Make sure you understand everything the doctor says. This way you will know what you need to do to care for your child.
- Wash your hands often with soap and water for at least 15 seconds, especially after coughing or sneezing. Alcohol based hand sanitizers also work to kill germs.
- If you are sick, cover your mouth and nose with tissue when you cough or sneeze. You can also cough into your elbow. Throw away tissues in the trash and wash your hands after touching used tissues.
- Keep your child away from others who are sick. Avoid getting too close (kissing, hugging) to people who are sick.
- Avoid sharing your towels or hankies with anyone who is sick. Clean commonly handled things like door handles, remotes, toys, and phones. Wipe them with a disinfectant.
- Avoid going to crowded places.
- Get your family a flu shot each year.
What follow-up care is needed?
- Your childs doctor may ask you to bring your child to the office to check on your child's progress. Be sure to keep these visits.
- Your doctor may have you take your child to see several specialists. Your child may need to see a heart doctor called a cardiologist. You may need to take your child to other experts based on their condition. Your child may need to see an ear, nose, and throat specialist and a speech therapist.
What drugs may be needed?
The doctor may order drugs to: ‚
- Give extra calcium and vitamin D
- Replace hormones
- Prevent infection
- Boost the immune system
What changes to diet are needed?
Your baby may need a special diet to make sure they are getting enough calcium and not too much phosphorous. ‚
When do I need to call the doctor?
- Signs of infection. These include a fever of 100.4 ‚ °F (38 ‚ °C) or higher; change in the sound of your babys cry; crying too much; muscles become stiff; bulging or fullness of the soft spot on your baby's head; if you feel your child is lethargic, irritable, or confused; if your child has a faster or slower heart rate; or decreased amount of urine.
- Twitching around the mouth, throat, arms, or hands
- Problems breathing
- Poor muscle tone or is floppy
- Does not seem to be developing at the same rate as other babies
Teach Back: Helping You Understand
The Teach Back Method helps you understand the information we are giving you about your child. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚
- I can tell you about my childs condition.
- I can tell you how to help prevent infection.
- I can tell you what I would do if my child had problems breathing or was twitching around the mouth or throat.
Where can I learn more?
American Academy of Allergy, Asthma & Immunology ‚
http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease/digeorge-syndrome.aspx ‚
Genetics Home Reference ‚
http://ghr.nlm.nih.gov/condition/22q112-deletion-syndrome/show/Patient+support ‚
National Organization for Rare Diseases ‚
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/853/viewFullReport ‚
Velo-Cardio-Facial Syndrome ‚
http://www.vcfsef.org/about_vcfs.php?parent_id=2 ‚
Last Reviewed Date
2015-01-14 ‚
List_set bdysylist
- Immunologic
- Neonatal
- Pediatric
Consumer Information Use and Disclaimer
This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care provider 's advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚
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Copyright ‚ © 2016 Wolters Kluwer Clinical Drug Information, Inc. and its affiliates and/or licensors. All rights reserved. ‚