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This is an article I wrote. It will be updated to include some comments from Dr. Martha Nance, the JHD expert, shortly. But your patient's mother might be interested in this plus you might be interested in some of the reference article.
Jean
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Your Child Is At Risk For HD-What Next?
Written by Jean E. Miller
Every child of a parent with Huntington's Disease has a 50% chance of inheriting the disease AND a 50% chance of NOT inheriting the disease. It is hoped this article provides some information and thoughts for parents to consider before seeking to have your child test for HD.
WORRY OVER SYMPTOMS
Almost every parent who writes me, whose children are at risk for HD or Juvenile HD, feel a child may be showing symptoms of the disease and they want to know how to get that child (or all their children) tested. This is especially true in families who were not aware of Huntington's Disease being in their family until recently. All of a sudden each child's every move, mood, lack of attention or problems in school, etc. is thought to be the "dragon" Huntington's.
JHD SYMPTOMS
The following was written by Dr. Martha Nance, an expert in JHD in the US:
Many physicians are slow to suspect or diagnose juvenile-onset HD.
The US HD Genetic Testing Group found that several factors were
characteristic of juvenile HD:
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An affected father
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Drooling or changes in speech or swallowing
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Seizures
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Severe behavior problems
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Rigidity (stiffness)
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Chorea (very uncommon in young children,but may be present in teenagers)
While a child with Juvenile HD may not exhibit every symptom, the more symptoms shown, the more likely that the child has the condition. A gene test will confirm that the HD gene is present, but it cannot predict the time of symptom onset nor can it prove the symptoms are caused by HD.
GENETIC GUIDELINES IN TESTING MINORS
The US HD Genetic Testing Guidelines will not test anyone under the age of 18 unless that child is clearly showing symptoms of HD and treatment for those symptoms would help improve their quality of life.
American Academy of Pediatrics (AAP) policy also recommends that genetic testing for adult-onset conditions (such as Huntington's Disease) should be deferred until adulthood, or until an adolescent can decide for him or herself.
The Huntington's Disease of America's Genetic Testing for HD (ref3) states:
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Testing of children (those under 18 years of age) is strongly discouraged. If a child is exhibiting symptoms of HD, a neurologist who is familiar with HD should be consulted.
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Genetic testing may then be recommended as a confirmatory measure in some cases.
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Given that each person should decide for him or herself whether or not to be tested, minors should wait until they can arrive at this decision for themselves.
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Testing of children may also expose them to discrimination by health insurance companies, employers, and perhaps (consciously or unconsciously) by their parents.
QUESTIONS A PARENT NEED TO ASK
It is understood how any parent would be concerned. Every parent with a child at risk for HD naturally looks for any signs that their child might have this disease and, seeing possible signs, want to take every precaution to make sure that their child gets the BEST care available, if they do have HD.
But a question a parent must ask themselves is "If you found out your child had HD would you be able to treat them normally?"....as if they didn't have HD?
There is an information pamphlet from the Huntington's Lay Organizations concerning predictive molecular genetic testing (Ref.2) where it suggests a parent ask themselves the following when thinking about testing a child:
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Do I need the test results to be a better father or mother to my children?
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What legacy did I give my children?
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Do I feel guilty with regard to my children and hope to reduce this guilt by obtaining a negative test result?
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How will my relationship with my children change after being confronted with a positive test result that implies a 50% at-risk status for them?
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When and how will I inform my children?
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How will I express to them my psychological trepidation's during the test phase?
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Do I feel obliged to my children or feel pressured by them to clarify my gene status?
In an article on the Psychological impact of genetic testing for Huntington's disease (Ref3) it shows where partners of someone testing for HD have had psychological distress from anywhere from 1 week to 3 years after the testing. For most, it is not easy to hide this distress from others.
Learning your child has HD is very devastating news, something that would be very difficult for you to keep hidden from that child. It would only be natural for you to become overly protective and precautious in how that child is treated both at home and in school.
Your reaction to this knowledge would be very difficult to hide from any child and eventually they would question your behavior. Would you be prepared to answer their questions, to be the one to tell them they have Huntington's Disease when they still have their childhood ahead of them to explore, grow and enjoy?
WHAT TO TELL YOU CHILDREN
Children, depending on their age, will have questions about their parent or relative who does have HD. Most literature tells us not to give the children more information then they need to know, or ask for, while at the same time making sure the children feel there is no secrecy or shame in talking about their feelings or about HD.
In a paper by Toni Mansfield, adapted from a presentation by Donna Palumbo at the 1997 HDSA National Convention, she discusses how to talk to Children of Parents With Huntington's Disease.(Ref1)
As a child "gets older, the parent will have to discuss the hereditary
nature of the disease and that the child does have a 50% chance of
carrying the gene. Honesty here avoids the possibility of your child
suffering secretly.
Understanding HD, every child will naturally want to know if they will get the disease and what their parents having the disease will mean to their life. These things can place an enormous burden on a child.
The above article indicates a child may have:
"emotional reactions may include denial, guilt, grief, anger, shame,and
hope. All of these are normal responses to the stress HD piles on their lives. Problems occur when a child experiences any of them over a prolonged period and has no outlet to address their concerns. If any negative behaviors persist, the family should seek professional help."
OTHER THINGS TO CONSIDER
Other things to consider before having your child tested for HD is whether or not you have adequate health insurance, long-term care and life insurance in place in case the child did test positive for HD. With a parent already diagnosed with HD it is probably already difficult for obtain insurance for the children of the affected person. But these things should be considered and looked into before testing an at-risk child.
SUMMARY
Having lost my only child, Kelly, to Juvenile Huntington's Disease, I fully understand the fears, frustrations and some times out and out panic in every parent who has a child at-risk. I am an advocate of testing minors, when one parent is HD positive and the child is exhibiting symptoms which is affecting their quality of life.
It's never too early to become educated and aware of the special considerations that need to be known in caring for a child with Huntington's Disease. However I sincerely hope that parents would ask themselves some of the questioned posed above and to give testing of a minor serious consideration prior to seeking a genetic test for their child.
There are several good resources for families with a child with Juvenile Huntington's Disease. If your child is at risk you may want to consider reading those to educate yourself on the symptoms of JHD and other pertinent information.
There are also several articles on how to talk with children about their risks for HD (see below) and a booklet "Huntington's and Me-A Guide For Young People" published by the Huntington's Disease Association (Wellington) Inc. that provides very powerful insight on what it is
like for a young person to live in a family with HD. This book is good for both parents and young people to read.
If your child is not showing symptoms, or having difficulty at home or at school, I would urge you to enjoy each and every second with your child and put off genetic testing until symptoms are clearly showing, which I pray they never will. In the interim, discuss you concerns with your
family physician and/or neurologist and keep a log of all suspicions you may have in order to discuss them later.
Love,
Jean E. Miller
Clearwater, Fl.
jemiller@tampabay.rr.com
RESOURCES - See HD links this website
REFERENCES
Genetic Testing for Huntington's Disease
See article elsewhere on this website
1. Children of Parents With Huntington's Disease
See article elsewhere on this website
2. Information pamphlet from the Huntington's Lay Organizations concerning predictive molecular genetic testing
http://www.huntington-assoc.com/thought.htm
3. Psychological impact of genetic testing for Huntington's disease
See article elsewhere on this website
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