Hearing Loss

H

Harry

Member
Hi, my first time on this forum - well first time putting a post. Just firstly wanna say a great thanks to Barbara, who has been verey helpful - your a gem.

My daughter - 2 years old, has had a sudden hearing loss. She was not born like it - it just happened in last 4 months. The ABR was bad - around 85DBHL billaterally. But she had clear working Cochlear Microphonics - her cochlear is perfect. So the Medical Doctors wanted to do a MRI Scan to see if there could be a cist,tumor etc. But The MRI Scan came back all clear. Her brain, nerves, cochlear, semi-circular canals all perfect. This has left my Medical Doctor (ENT Professor) confused and unable to diagnose her as he does not know what is wrong and where the problem is. He is the best Doctor in our district/city. He said it could be gene mutation, could be auditory neuropathy, sensineural hearing loss - other other factors. But there is nothing to show what it is. We are paying to see another person who is supposidly the best man within a 100 mile area. We are also doing a genetic test.

My quesion is, does anyone have the same problem?? Or does anyone know what could be wrong with my daughter??? Anyone have any input/help.

Or is there anyone who could help me that you could recommend. Can stem cells help my daughter?? Has anyone had positive results from stem cells??

Your input would be appreciated.

Harry
 
P

pink7

New member
Hi,
I am sorry to hear about your little daughter's hearing probelms.I have a friend who is in his 40s'and he experienced a similar episode when he was a little boy. The Doctors' said that he had suffered a viral infection which damaged his hearing. Did your daughter experience a viral infection in the last 4 months?

Best Wishes
 
H

Harry

Member
Hi Pink7, no my daughter has been a healthy bunny - touch wood. No infections, no illnesses, nothing to give a reason for her condition. Even the Medical Doctors dont know. We are left in limbo. We are doing a gene test to check if its not a genetic mutation. But there is not history in the both our families, and she only aquired this in last 4 months or so, as she used to dance to music etc. The funny thing is - the audiologist and other docs says she does not act like a deaf child. She has a sweet voice, and babbles normally and not loud. The MRI scan is all clear aswell. So we dont know what to do. I want the best person in this field so they can me but i dont know where to start to find the best person. We are from UK but are willing to travel to USA to see the best person.
 
B

barbara

Pioneer Founding member
Harry - I must be missing something at this link. Is there a particular article that you thought was interesting?
 
C

Cynthia

New member
Hi Harry, welcome to SCP!
I'm so sorry to hear about your little girl. Being 2yo she has had a chance to grasp language skills so that is a good thing. I am deeply troubled about how this came about. My first thought is that it is autoimmune hearingloss. I have read about this on the internet where seemingly overnight someone losses their hearing. One instance I read about was a girl named Chloe where it wasn't quite overnight but fairly quick. She was able to gain most of her hearing back thru an expensive intense stem cell protocol in Korea. But i can't comment on exactly how much she was missing to begin with. Other than that i haven't heard of any other successes. Believe me i am searching!! I have hearing loss nerve deafness 85+ or sensory neural as the medical profession calls it. There is a clinic in Mexico called Nepsis that was willing to experiment on me to see if we could get some result. It is a reputable clinic with fantastic scientists. Dr. Payne & Dr. Ramirez are have commented on the SCP board here. It really came down to the costs for me. Stefan Heller at Stanford university in California has been working on several stem cell cures for hearing loss. He might respond if you email him. There is an international hearing loss support and resource center that i belong to called HLAA.org based here in Maryland might be able to shed some light as to the causes. Pls keep us all posted on your findings.
 
B

barbara

Pioneer Founding member
Nepsis is Defunct

Good to hear from you Cynthia. It's been awhile since you've posted. Nepsis is no longer in business. They were willing to experiment on me too and a few others. I became seriously ill from the treatment and I feel I am lucky it didn't kill me. Dr. Ramirez no longer works with Larry Howard, who was the owner of Nepsis or Dr. Payne to my knowledge. He also was not involved when I got the treatment from hell from them, but I do not know if Dr. Ramirez is treating hearing loss. Unfortunately, there is too much experimenting going at some clinics. Hopefully, something more promising than having patients pay to be lab rats will come down the pike soon.

Do you know if Stefan Heller is anywhere close to bringing his research to the clinical stage?
 
H

Harry

Member
Hi Cynthia, thanks for the info - your so sweet. I also thought it could be autoimmune disease, and i do know about Chloe Sohl. She is on Facebook but will not respond to my emails. I just wanted to ask her if it was genuine or a scam. But the more i read and think about it, i think its a scam. The USA Media should have shown this everywhere. But who knows.

We still do not know what is wrong with my daughter. She could have auditory neuropathy, sensorneural HL, AIHL and other things. They say it COULD be gene mutations. Its so confusing. We are having more tests done, all i want is someone to take my daughters case seriously, to investigate her, to challenge her disease. Yes we will ay for it (somehow).

I have been speaking o Dr Bansal in India. He does stem cell treatment and is non-profit as his work is based on research. He is well known and has been invited to USA many times to discuss stem cells. He cured an american person after he lost his sight. He went China and the treatment failed so he went India where it worked. Research him.

I also have been speaking to Rachel Vandergriff who is an assistant to Dr Ramirez. He is still treating and has his own website
He said he could help but it comes down to there is no guarantee.

Was you born with your hearing loss??? how did you encounter it?? Did you have an MRI scan??
 
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