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Remedy for Menkes Kinky's Hair Syndrome - Online Doctor Chats

Date : 21-Feb-2012
User rating for this question
Excellent Posted in: Skin Hair and Nails
Answered by

General & Family Physician
Practicing since : 2004
Answered : 40 Questions
User :   Hi Doctor , I have one son ( 4 yrs old ) one daughter ( 7 months old ) , They both have very slow hair growth since they have born, We have shown to many doctors pediatrician , And also tried to consult Aurvedic Doctors , when we have shown to a Dermitologist Surgeon, He has stated this is caused by a Known Diseases " Meakes Kinky's Hair Syndrome " . Please do advise any solution for it                     
Doctor :   hi
Doctor :   Dr. XXXXXXXX here. let me read what you have typed.
User :   ok
User :   They also have very small curley hairs
Doctor :   the diagnosis what the doctor gave as Meakes Kinky's Hair Syndrome, occurs due to inborn metabolic error
User :   what is the solution or medicine for this
Doctor :   that is caused by a defect occurring in the ATP7A gene
Doctor :   which results in difficulty for the body to to distribute and absorb copper
Doctor :   and leads to structural abnormalities in bone, skin, hair, and blood vessels and can also interfere with nerve functioning
Doctor :   and the disease is known to runs in families
Doctor :   what tests have been done for your children?
Doctor :   there are specific blood tests to confirm this diagnosis that your doctor gave
Doctor :   which include these special tests: User :   We have done serum copper , serum plasmin , CBP, CUE test
User :   We are yet to get the results...
Doctor :   Serum ceruloplasmin levels, Skin cell (fibroblast) culture, X-ray of the skeleton or x-ray of the skull
Doctor :   ok. when are the results due?
User :   We will be getting it in two working days
Doctor :   if confirmed to be the Menkes Kinky's Hair Syndrome
Doctor :   then the treatment would involve copper suppliments
Doctor :   and injections given in the vein or under skin
Doctor :   also a genetic test should also be done
Doctor :   to see if the gene is affected, if the gene is having defect, then this wil run further in your family.
User :   Doctor we heard if the patient is been found with " Menkes Kinky's Hair Syndrome " , There life span will be short ... Is it true ?
Doctor :   affecting mostly the male babies
Doctor :   if the diagnosis and treatment is not start early, then the life span becomes very short
Doctor :   if treatment is initiated early, life can be prolonged
Doctor :   get a genetic test and counselling done for both you ad your wife, to see who has got this gene defect
User :   ok, Doctor can we consult you or can we have appointment with you
Doctor :   which is passed on to the children
Doctor :   I am available only online, you can get back to me again once you have the reports with you
User :   so can we only get you on this chat room only
Doctor :   yes, as of you can discuss with me over the chat
User :   Any idea , if we can suggest any Aurvedic or Homeopathic treatments
Doctor :   there are no other treatments, they claim it can be treated in ayurveda and homeopathy, but there are no proven results
Doctor :   i would recommend you to await the results
Doctor :   and then proceed with the treatment options
Doctor :   you can read more about the disease on link
Doctor :   XXX
User :   ok, My wife is so much worried , She read a Article in Net as it could effect the life span of the kids
Doctor :   without early treatment the life span is only a few years of life
Doctor :   but with treatment and regular suppliments and folow up
Doctor :   the life can be prolonged
User :   If found this disease is found to be correct .....
Doctor :   also the outcome depends on the severity of the disease
Doctor :   and the extent of the defect present in teh genes
Doctor :   if the gene is affected in both you and your wofes side, the affect would be greater
Doctor :   than when it is present singly
User :   ok..
User :   But iam worried , we did not had this kind of issues in any of our family members
Doctor :   it usually satrts manifesting within 2-3 months after birth in severe cases
Doctor :   the genetic test done on you and your wife would confirm if it was present in any of your family tree members
User :   My wife had a two times Abortion before my first kid born ( son - 4 yrs ) ...
Doctor :   ok, was the cause known for the abortions? were they spontaneous abortions?
Doctor :   in any case, treatment should be started as early as possible
User :   There was no causes have been found... There was a Thyroid & fibroid problems for my wife
Doctor :   ok
User :   During first pregency
Doctor :   ok
Doctor :   for a detailed discussion on the disease you can talk to our panel dermatologists
Doctor wwww://www.wwwwwwwwwwww
Doctor :   visit this link if you need to consult them
Doctor :   for now, await the test results
User :   ok, i will take a prior Appointment with Dr :XXX
Doctor :   and go ahead with the x-rays that I suggested
User :   For both of us
Doctor :   once the results are ready
Doctor :   you can take a second opinion and further guidance on what you should be doing next
Doctor :   have you followed what I have said?
User :   I think once the result comes, Then only we can confirm if there is a " Menkes syndrome " for my kids
Doctor :   yes, we have to wait for the test results and further investigations to confirm it
Doctor :   is there anything else you would like to ask me?
User :   Two years back also we have done similar test for my son , But the result was normal
Doctor :   if all the test results were normal for your son including the special tests
Doctor :   then the possibility of undernutrition could be a cause of slow hair growth
Doctor :   is his other growth fine? is he active? does he eat well?
User :   That was been suggested by peadistrian , we have done both tests
User :   Yes, He doesn't eat properly...
Doctor :   ok
Doctor :   are you giving him any nutritional suppliment?
User :   He is very very active
Doctor :   what was his birth weight?
Doctor :   what is his current height and weight now?
User :   2.45 KGS
User :   Currently he his around 13 KGS , 4 yrs , 103 centi meters
Doctor :   are you giving him any nutritional suppliment?
User :   no
User :   Doctor not suggested, Can you suggest any ?
Doctor :   ok. i would recommend you to discuss with his pediatrician 'and start him on multivitamin suppliments id he does not eat well
Doctor :   as lack of essential vitamins can cause growth retardation.
User :   we have given multivitamin ( kidi care ) , But still there was no hair growth
User :   Please can you suggest any medicine
Doctor :   you have to give it continuosly upto age of 5-6years
Doctor :   you can give him BOOTS or ABDEC syrup
Doctor :   daily along with a good well balanced diet
User :   ok doctor, I will go with it
Doctor :   Please fill the feedback form say done when done
Doctor :   Thanks for consulting me. Bye for now. Please chat with our doctors 24/7 for medical queries. Please refer your friends to our service
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