Does anyone have a young child diagnosed with Meniere's?

Discussion in 'For Friends & Families of Menierians' started by MeniereMom, Sep 23, 2010.

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  1. MeniereMom

    MeniereMom New Member

    I am the Mother of a 9 year old girl who has recently been diagnosed with Meniere's and is in the process of being fitted for hearing aids. I am wondering how common it is in children this young? And if anyone has any helpful hints??
  2. Tia

    Tia New Member

    Hi there Meniere's Mom...

    My daughter (tia) was 12 when she was diagnosed... what an adventure.. She first started showing symtoms in 3 grade.. I was told she was faking it, she had an eating disorder, she had a brain tumor... it went on and on until she was so sick with vertigo and other symptoms she was home schooled... finally an ER Doc mentioned Meniere's.. the only thing I can say is listen to you child when they say " I don't feel good" they really don't.. my daughter is 25 now and her Meniere's has fired up in her good ear so it never ends but armed with a folder of info we never made a secret of her illness , informed all teachers of her symptoms and hearing loss. To that end she graduated at the top of her class, was very active in high school, and is finishing a degree. I never let her quit doing things because of Menieres' tho I did make a secret out of the no driving thing until just recently.. lol.. she does drive now but we had to hold off until we here symptom free for a good year.. Low Low Sodium!!! can't say it enough.. it is so important... and rest.. naps.. it is hard for us to understand and I thought she was just hiding out but Tia still takes naps.. because her brain is getting so many mixed signals... it is very tiring and rest is a big deal...quiet places for her to hang out.. sometimes an over load of ambient noise is overwhelming... and far as the hearing aids.. my daughter has had behind the ear aids and you would be hard pressed to even know she is wearing them.. because the actually outside part matches her hair ... If your daughter needs a mentor.. Tia is a good roll model for Meniere's.. she is living with it every day.. Find a Good NeurOtolarynist.... ENT's are not always good choices for Meniere's... depending on where you are the U of MN is wonderful...

  3. Brook76

    Brook76 New Member

    I was the young child diagnosed with Meniere's disease. I have had acute vertigo, vomiting, etc. since I could remember. My mom said I was a sickly baby..eyes rolling up in head, screaming, and profusely vomiting. My first experience that I actually remember was about age three. They thought I just had some sort of migraine or I was faking it for years. Countless doctors, tests, pills, etc. and at age twenty I got the official diagnosis. I would have loved to had a diagnosis as a child. I may have not been singled out so much as a freak by people around me then. Parents, kids, heck even school employees were apprehensive around me. Most were not kind. Many teachers would yell at me..then kids would stay away from me because I was a freak. Everything got so bad for me..with attendance and such because of the severity..I dropped out at the end of ninth grade. But the month after I turned 18, I got my G.E.D. and started college. It took me a little longer to get my degree because of my disease..but I did finish and graduated with honors. Also, I did work for several years until my disease forced four ear surgeries with no success. I am now 34 years old and fully disabled. I am working on a VNS with the hope that this will finally give me the life I have always wanted. I am bilateral but only the right ear completely hinders me. It is hard being a child with this disease. Most people would love to revisit their childhood. You could not pay me enough to go back through my childhood. But, on the other hand, I am stronger and more resilient in myself and my faith than others. What doesn't kill you will make you stronger. And I believe strife makes you a better human being. I know it is hard, believe me, to see things on the bright side. You can PM me if you need to anytime. I have never met anyone else who had juvenile menieres disease. I was beginning to think I was the only one in the world. It is comforting to know I am not alone.
  4. bulldogs

    bulldogs New Member

    I would rake a long hard look at migraines, she does not need a headache to have migraines. Just got back from John Hopkins and I thought I had mm for 4 years, now they think it could be mav. He symptoms are the same. Dr told me when patients present with bilateral symptoms they start with migraines and work from there.
  5. dizzysheba01

    dizzysheba01 New Member

    I'M 71 years old and developed bi-lateral Menieres at the age of 10. It was a tough ride but I went through grade school, high school, college. had a great career and active social life.

    I grew up in a small Upper Michigan town and did not have access to state-of-the art medical care and did not get proper advice or treatment until I came to Chicago after leaving school. Here I met a great Internist who referred me to Northwestern University Medical School and a doctor who treated me for many years.

    Because of the severity of my attacks over so many years without proper diet or medication, I am left with severe hearing loss in both ears and total loss of balance. However, I still manage to be quite active.

    Encourage your child to be as active as possible. Make sure she eats a healthy diet and gets plenty of exercise and rest. There are also medications and supplements that help. Go to the Data Base and check out John of Ohio supplement program. Some of those supplements may help her. My doctors, when I was a child and young adult, emphasized the B vitamins.

    Because I lacked
  6. shelly3257

    shelly3257 New Member

    Check the board, another mom of a 10 year old just posted her son has Meniere's also. Her name is "parkersmom".

    Also, check out my post in answer to hers. I have a 10 year old girl with the same symptoms as me (which mimics Meniere's) and was in fact migraine. She has been on a migraine preventative medication daily for 4 months, and her symptoms are just about gone.

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