My 3 yr old daughter has Leukodystrophy. she is problem in hearing. is there any therapy,medicine or treatment?
we have get her MRI for her hearing treatment.she is inteligent. learns quickly her vision is also ok.
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depending on the cause and severity of the hearing loss, surgery such as myringotomy with tube insertion or hearing aid fitting could be of benefit. make sure your ear nose and throat physician explains all the findings to you in terms you can understand. (
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Possibility of treatment for Metachromatic Leucodystropy by Homeopathic medicines.?
My 3 daughers were born normal. At the age of 5 degenerative disease discovered and diagnosed as Metachromatic Leucodystrophy and now they are handicapped. Still I am trying to explore the possibility of treatment. If further details are needed I have complete summary and can be sent who wants to help us.
I will be greatful for any kind of help or guidance extended.
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Dear Mom of Angels,
This site has a great deal of information and links to other sites. I am looking for clinical trials and will update you accordingly. Just email me so I can contact you. I have a terminal disease with no cure either. Its pulmonary hypertension or high blood pressure in my lungs. Prognosis: Sure death by slow suffocation. So, I know the pain you're in. Here is the info I found:
What is Metachromatic Leukodystrophy?
Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies. These diseases impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least 10 different enzymes. The leukodystrophies are caused by genetic defects in how myelin produces or metabolizes these enzymes. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the enzymes. MLD is caused by a deficiency of the enzyme arylsulfatase A. MLD is one of several lipid storage diseases, which result in the toxic buildup of fatty materials (lipids) in cells in the nervous system, liver, and kidneys. There are three forms of MLD: late infantile, juvenile, and adult. In the late infantile form, which is the most common MLD, affected children have difficulty walking after the first year of life. Symptoms include muscle wasting and weakness, muscle rigidity, developmental delays, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia. Children may become comatose. Most children with this form of MLD die by age 5. Children with the juvenile form of MLD (between 3-10 years of age) usually begin with impaired school performance, mental deterioration, and dementia and then develop symptoms similar to the infantile form but with slower progression. The adult form commonly begins after age 16 as a psychiatric disorder or progressive dementia. Adult-onset MLD progresses more slowly than the infantile form.
Is there any treatment?
There is no cure for MLD. Bone marrow transplantation may delay progression of the disease in some cases. Other treatment is symptomatic and supportive.
What is the prognosis?
The prognosis for MLD is poor. Most children with the infantile form die by age 5. The progression of symptoms in the juvenile and adult forms is slower and those affected may live a decade or more following diagnosis.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), conducts research on the lipid storage diseases in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country.
Select this link to view a list of studies currently seeking patients.
Organizations
The Arc of the United States
1010 Wayne Avenue
Suite 650
Silver Spring, MD 20910
[email protected]
http://www.thearc.org
Tel: 301-565-3842
Fax: 301-565-3843 or -5342
Myelin Project
2136 Gallows Road
Suite E
Dunn Loring, VA 22027
[email protected]
http://www.myelin.org
Tel: 703-560-5400 800-869-3546
Fax: 703-560-0706
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
[email protected]
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
National Tay-Sachs and Allied Diseases Association
2001 Beacon Street
Suite 204
Brighton, MA 02135
[email protected]
http://www.ntsad.org
Tel: 617-277-4463 800-90-NTSAD (906-8723)
Fax: 617-277-0134
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
[email protected]
http://www.ulf.org
Tel: 815-895-3211 800-728-5483
Fax: 815-895-2432
You'll be in my thoughts and prayers,
Regards,
Raylene♥ (
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in leukodystrophy the biggest group is of Op__po__sclerosis?
please help me find it. i am not sure about the term, but it sounds like the above word.
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What is aldrino leukodystrophy?
ALDRINO LEUKODYSTROPHY
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you could totally google it yourself but whatever
https://health.google.com/health/ref/Adrenoleukodystrophy (
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does anyone know anything about the disability Leukodystrophy?
The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient. Below we describe the source of the disorders in more detail. Fact sheets on the individual leukodystrophies are also available from the United Leukodystrophy Foundation.
The word leukodystrophy comes from the Greek words leuko (meaning white), trophy (meaning growth), and dys (meaning ill). If you put these words together, the word leukodystrophy describes a set of diseases that affect the growth or maintenance of the white matter (myelin).
Leukodystrophies are mostly inherited disorders, meaning that it is passed on from parent to child. They may be inherited in a recessive, dominant, or X-linked manner, depending on the type of leukodystrophy. The individual pages on each leukodystrophy will describe the particular pattern of inheritance for that disease. There is also a separate fact sheet describing the different genetic inheritance patterns available from the United Leukodystrophy Foundation.
There are some leukodystrophies that do not appear to be inherited, but rather arise spontaneously. They are still caused by a mutation in a particular gene, but it just means that the mutation was not inherited. In this case, the birth of one child with the disease does not necessarily increase the likelihood of a second child having the disease.
How many different leukodystrophies are there?
New leukodystrophies are always being identified. We try to keep our information as up-to-date as possible, and so the 34 leukodystrophies we have listed here comprise the defined leukodystrophies to the best of our knowledge. Not all of these meet the strict criteria for the definition of a leukodystrophy. These have been marked with an asterisk. They are included here because they have features that resemble the leukodystrophies. Please let us know if you are aware of any other types so that we can add them to our list. A fact sheet on each of these diseases is available from the United Leukodystrophy Foundation.
type it in google if you need more info xxx (
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how long will a child live being diagnosed with leukodystrophy @ birth. Age 3 now?
The prognosis varies with the type of leukodystrophy.
Check out this site for more info/help:
http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm (
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My son is 11 years old he has been diagnosed with an arrested slowly progressive leukodystrophy need more info
My family will be praying for your family.Sorry but that is the best we can do.I hate to think of babies being sick at all.My wife and I have 8 children and 14 grandchildren, so we've had our share of illnesses , and prayer really does work. (
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My son Is 6 year old.He is suffering from leukodystrophy.?
My son Is 6 year old.He is suffering from leukodystrophy.He is improving as he starts sign language and few words.He almost understands every thing and plays tricks aswell.I just want to know about this problem does it stays forever like that or it get worst by the passage of time.Thanks
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Treatment options for metachromatic leukodystrophy are very limited. Bone marrow transplantation, when performed early in the course of the disease, has been used effectively on appropriate patients, but also poses some risk. Gene therapy research may eventually lead to a cure or treatment to slow the progression of MLD disease. Genetic testing and genetic counseling are strongly recommended for adults with a family history of MLD.
this is the best i could find, but i will pray for your son. (
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Is Leukodystrophy a sex-linked?
Im doing a project and i need an answer to this please help
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Have you tried wikipedia yet?
"Leukodystrophies are mostly inherited disorders, meaning that it is passed on from parent to child. They may be inherited in a recessive, dominant, or X-linked manner, depending on the type of leukodystrophy."
'X-lined manner' refers to being linked to the x-chromosome. So it would seem that some are gender-linked. I suggest reading the articles on each of the types of Leukodystropies to see which are sex-linked. (
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homoeopathic doctors, is there any cure for leukodystrophy?
my son has the problem of leukodystrophy. it has no cure in allopathic medicine. my first son died of this disease. and now my second son is its victim, though my daughters are all right.
his symptoms include
1. he can not see.
2. he has seizures.
3, he has twisted hands while his fingers are closed most of the times i.e make fist.
4. he is weak
5. he can listen to sounds.
6. his age is 4 years.
the main problem lies with my wife as she has a genetic defect which is not shown by her but she has transmitted the disease only to male children and not to female children.
plz any one can help, as i have lost my first son and cant afford to lose the second one.
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Pphosphorus and calcaria carb., should help him a lot to start with. For myeline sheaths, hypericum, aesthusa, aurum metalicum, plumbum, kali phos, secretin, are few of the medicines worth looking into. All medicines that helps in Lateral Sclerosis, arterio sclerosis, multiple sclerosis, locomotor ataxia, in homeo and specifically said so in boericke materia medica should be of value here. Single medicines cannot be specific to the conditions in pseudo muscular dystrophes and other kinds of dystrophe, phosphorus have been found showing improvement and in hypotonic conditions. In clonic conditions, homeo medicines with benzene have been giving some results.
For Epilepsy the following medicines will be useful and one of these medicines may help other conditions. According to the symptoms a good homeo doctor may be able to help with the child, though a difficult task.
abisinthium., aethusa, agaricus, amonium bromide, amylium nit.Arg.nit. Arsenicum album.,Asteria Rub., Atropia, Avena Sat., Aurum met., Belladonna, Borax, Bufo, Calcaria Carb., Calcaria Ars., Calcaria Phos, Camphor, Cannabis Indica, Causticum, Cicuta mac., Cicuta Virosa., Cocculus, Conium, cuprum acetate, cuprum met., Ferrum Cy. Ferrum Phos., Gelsemium, Glonoinum, Hepar,Hydroc.acid.,Hyociamus, Ignitia, Illic., Indigo., Irid., Kali Bromide., Kali Cy. Kali Mur., Kali Phos., Lachesis., Mag.Carb., Mag Phos., Meli., Methyl Bl. Nitric Acid., Natrum Mur., Opium, Passiflora, Phosphorus., Picrot, Plumbum met., Psorinum., Solanim nig, Santonium., Sec.,Silicea, solan.,stramonium, strychnum.,sulfur, sumbul., Tarentula H., Tuberculinum, valerinum., verbascum, viscum., Zincum met, Zincum Phos, Zincum valerianum., Zinia.
If the eyes are affected due to sclerotic degeneration the following remedies will be of value:
Aurum., Baryta Muriaticum., Plumbum met.,
Aconitum.,
hope this helps (
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