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Homocystinuria Discharge Instructions, Child


About this topic


Protein is part of the food you eat. It is made of smaller building blocks called amino acids. Enzymes are needed to change the amino acids so your body can use them. Homocystinuria is a disease where you cannot change one of the amino acids in the food you eat. With this condition, the enzyme is missing or not working the right way. Then, the amino acids build up in your blood and cause problems. Homocysteine is the amino acid that builds up in your blood. ‚  

What care is needed at home?


  • Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do to care for your child.
  • Your childs doctor will send you to a dietitian to get a special diet.
  • Make sure to give your child any drugs ordered by the doctor.

What follow-up care is needed?


  • Your childs condition needs to be watched closely. The doctor may ask your to make visits to the office to check on your child's progress. Be sure to keep these visits.
  • Your doctor will tell you if other tests are needed.

What drugs may be needed?


The doctor may order drugs to: ‚  
  • Lower homocystine levels in the blood
  • Give missing enzymes
  • Give vitamins and minerals, such as B6 or folic acid

Will physical activity be limited?


Your child may be delayed in crawling and walking. ‚  

What changes to diet are needed?


Follow the diet closely. This may help improve your childs illness. The diet is mainly fruit and vegetables and very little meats, eggs, dairy products, bread, and pasta. ‚  

What problems could happen?


  • Blood clots
  • Weakening of bones or broken bones
  • Learning disability
  • Problems seeing

What can be done to prevent this health problem?


Since this is a disease you pass down to your children, you may want to do genetic testing before having a baby. Then, treatment may be started right after a baby is born. This will help to lower any problems from the illness. ‚  

When do I need to call the doctor?


  • Signs of a blood clot in different parts of the body
    • Pain or redness in your childs calf could be from a clot in the legs
    • Chest pain or trouble breathing could be from a clot in the heart or lungs
    • Difficulty walking or talking, or weakness could be from a clot in the brain
  • Seizure

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 what changes I need to make with my child's diet or drugs.
  • I can tell you what I will do if my child has signs of a blood clot or seizure.

Where can I learn more?


Genetic and Rare Disease Information Center ‚  
http://rarediseases.info.nih.gov/GARD/Condition/10770/Homocystinuria.aspx ‚  
Screening Technology and Research in Genetics ‚  
http://www.newbornscreening.info/Parents/aminoaciddisorders122110/Homocyst_update_2010.pdf ‚  
Washington State Department of Health ‚  
http://www.doh.wa.gov/Portals/1/Documents/5220/5220-HCYS-GO.pdf ‚  

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 providers 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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