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Juvenile-HD

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INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Fevers - Unexplained

INDEX Page


Unexplained Fevers in people with Huntington's
June 06, 2000
--------------------------------------------------------------------------------
Joan wrote 6-00:
I would like to ask is about the fevers, why did you have a problem
with that? My husband is having trouble with a elevated temp from only 99 to 100.5, but it makes him feel bad. He has had HD about 10 years since diagnosed.
 
Is this something that goes along with HD? Our doctor does not know about it , but cannot find anything wrong with him. He is losing weight very fast.
==============
Joan - I was sorry to read about the problem your husband is having. One of the first things that comes to mind, in your other email where you talked about his lack of interest and constant sleeping, is the medications he is on.  Has his doctor recently changed his medications and/or dosages prior to the changes you are seeing in him?
 
With respect to fevers there are two areas for consideration why pHD's can have unexpected bouts of high fevers.
 
(1) A change in the hypothalamus due the affects of HD on the brain and
(2) neuroleptic malignant syndrome which is caused from the drugs prescribed.
 
Following is some data which has been discussed before which I would
suggest you discuss with your husband's primary physician or neurologist (or whoever has indicated to you that the fevers are not HD related).

=============================================
21 Apr 1999
 
After battling years of unexplained fevers and questioning physicians, nurses and finally other pHD/ caregivers Jill L. got in touch with the local research at the SC University and they did a study on the Thermal Regulation Deficit which concluded all of us were NOT nuts in associating the fevers with HD. If not kept in check, when these fevers start reoccurring, it can lead to chronic dehydration which causes lethargy, constipation, etc.
 
According to Jill the study reflected:  
 
Even without neuroleptic drug interaction, this manifestation of the hypothalamus occurs........ even manifesting as a constant low grade fever in HD patients without bacterial or viral cause......
 
(Just ask the people who have gone through spinal taps, milograms, endless blood tests, all providing non conclusive information).
 
Herwig W. Lange, MD. NTC a well recognized physician treating HD from
Dusseldorf/Cologne wrote the following on 4/7/97:
 
"If fevers caused viral and bacterial causes are excluded, the fever probably is caused by a malfunction of the hypothalamus, an area in the brain which shrinks during the course of HD. It loses about 15% in volume.
 
This hypothalamic atrophy makes the brain vulnerable to the effects of dopamine, as seen in cases of malignant neuroleptic hyperthermia in patients with HD, a very serious complication of neuroleptic drugs.
--------------
This was posted by CCF NEURO MD on April 25, 1997 at 17:30:22:
In Reply to: Fevers in Huntington's Disease posted by Alison R. on April 17, 1997 at 08:48:43:
 
Since this past September I have been running a low-grade fever, which never goes above 100 degrees. In a few months I was incapacitated to the point that I had to use a wheelchair. I was recently diagnosed with Huntington's Disease. On days where my temperature is low, I feel symptom-free, normal. The rest of the time I am wheel-chair bound. I visited a doctor who says that fevers are not a symptom, and has no medical prescription to help. I have tried numerous aspirins, tylenol, motrin, every over-the fever reducer which doesn't work well. Does anyone out there have any suggestions?

Doctor's response
Hello Alison,
 
Fever is usually seen in the presence of an infection. The first step in the evaluation of fever is a careful methodical search for evidence of infection by an internist or an infectious disease consultant. If after a thorough evaluation is performed over a period of time and no source of the fever is found then the term "fever of unknown origin" is used.
 
Some of the more uncommon sources of fever include drug-induced fever (many drugs can produce fever as aside-effect), neuroleptic malignant syndrome (also produced by drugs especially the class of drugs called neuroleptics.)
 
Some of the medications used in movement disorders such as Huntington's disease can cause neuroleptic malignant syndrome. This is a disorder characterized by confusion, stiffness of muscles, dysfunction of the autonomic nervous system (which controls the pulse rate, blood pressure etc.) A blood test called CPK level is usually elevated in this disorder.
 
The hypothalamus is a part of the brain that control the internal environment of the body. Potentially dysfunction of the hypothalamus could cause fevers. I had not seen nor have I read of this being a problem in Huntington's disease. Another uncommon cause of fever are some types of cancers. In summary then I would suggest that you seek an evaluation from an internist or a infectious disease expert to being the initial evaluation.
==============================
 
When I posted the above I wrote the following on our experience with fevers:
 
Kelly's fevers would always start instantly, out of nowhere, and if not caught in time would  spike to 105, 106 degrees. Her normal temperature was 96.5.  After months and months of going through this and almost killing her with OTC cold medication  we finally quit all the associated medication and would only give her liquid Tylenol in her  feeding tube when the fever wasn't caught in time.
 
IF you can catch a fever when it first starts (with Kelly the moment her fever hit 97.5 we took  action)  you can get it under control, or at least we did.
 
My freezer was stocked with bags of frozen green peas. Placing bags of frozen peas under key pulse points like back of knees, under armpits and behind the neck would keep the fever from getting higher. This, and keeping her lightly covered and calm, along with ice baths  would eventually bring her fever down to her normal 96.5.
 
The thing that is worrisome about the high fevers is it causes further damage to the brain when they are constant and the person with Huntington's Disease (pHD) has a higher risk of having seizures due to the fevers. Therefore, it's important to watch for them when your pHD is fever-prone and start treating them before they spike too high.
------------------
Jean Miller
Clearwater, FL.
jemiller@tampbay.rr.com