Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Hi anyone! I just was informed the other day my daughter who is three tested positive for meniere's disease. We redid the bloodwork today. I have only heard of adults getting this disease. Does anyone here know anything about this topic? I did get on different sites on the internet but everything seemed to be geared for adults. Any suggestions where I might go for info and anyone have experience with this? It just seems things keep on adding on I guess your plate never gets full. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Re: Meniere's in Children We are testing our daughter for this as well on Monday. The key is a Low Frequency Loss. I am getting information from Ann Marie Tharp at Vanderbilt who is the countries expert on Low Frequency Loss. When I get the info I will send it to you. I do know that it can start early in children but it is not common. I was also told that there are balance issues with this disease and testing the balance in the ear is the way it is confirmed. I was not aware that you can dietermine this with a blood test. Please tell me more. Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 In a message dated 6/18/99 7:23:21 PM Pacific Daylight Time, SDunnstern@... writes: << The key is a Low Frequency Loss. I am getting information from Ann Marie Tharp at Vanderbilt who is the countries expert on Low Frequency Loss. When I get the info I will send it to you. I do know that it can start early in children >> Low frequency loss is the key? Any particular extent? Meaning primarily mild or moderate or what? My daughter was just diagnosed with low frequency loss so I am also intereted in info Tks Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 I am just beginning to get information on this. In the publication; Hearing Loss in Children Volume 46 . Number 1 . February 1999 Titled Minimal, Progressive, and Fluctuating Hearing Losses in Children Characteristics, Identification and Management By Anne Marie Tharpe, PhD, and Fred H. Bess, PhD. Under Meniere's Disease; Early reports of childhood Menieres first appeared in the late 1930's and early 40's with children as young as 4 years of age demonstrating symptoms, hearing loss associated with Menieres disease is typically unilateral (80%), fluctuating, and primarily in the lower frequencies in the early stages of disease. This paper is the only current information I can find that addresses mild to moderate hearing loss in children. If you give me your address I will copy it and send it to you or I can try to fax it but I just got a scanner and I don't know how to use it yet. Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 In a message dated 6/20/99 5:05:50 AM Pacific Daylight Time, SDunnstern@... writes: << unilateral (80%), fluctuating, and primarily in the lower frequencies in the early stages of disease. >> My daughter's is bilateral so I assume this doesnt include her. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Hi Sheri! They did a sensory-neuroimmunology profile on my daughter. One of the tests was a Collagen Type II which was the only test she tested positive for. Normal levels are below 5 her level was 15. We have redone the test this past Friday. They told me this test is very new and only a few labs run it in the U.S. The problem the doctor says is that this test was done within an hour of the attack and the retake was done without an attack. He is not sure if the levels would be different or would they remain the same with or without an attack. I'll know more when I get the results in 1 to 2 weeks. Please let me know what happens and I'll be glad to share anything I get too. lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 In a message dated 6/20/99 1:41:52 AM Eastern Daylight Time, Theathdi@... writes: << Low frequency loss is the key? Any particular extent? Meaning primarily mild or moderate or what? My daughter was just diagnosed with low frequency loss so I am also intereted in info >> Hi Terry I was told the same thing. Audrey on her last tinnitus attack showed low frequency loss in the mild to moderate range. i don't know if that is helpful. She tested by bloodwork positive for Meniere's disease. I know there are issues that go along with this disease. lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 >Does anyone here know anything about >this topic? I did get on different sites on the internet but everything >seemed to be geared for adults. Any suggestions where I might go for info and >anyone have experience with this? It just seems things keep on adding on I >guess your plate never gets full. Lori I asked one of my contacts about this (she runs a list for folks with meniere's) and this is what she's responded with: >well i checked the experts page , dr.john shea III. he reports a >patient age 9 mos but doesnt say if it is menieres. you can pass his >site along.... > www.ears.com I took a quick look at the site and if you go to the " Ask the Experts " section, you'll find tons of info on meniere's. You might find what you're looking for there. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 In a message dated 6/20/99 2:19:08 PM Pacific Daylight Time, LCorc16@... writes: << The problem the doctor says is that this test was done within an hour of the attack and the retake was done without an attack. >> wHAT type of attack? Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 In a message dated 6/20/99 6:47:33 PM Eastern Daylight Time, Theathdi@... writes: << wHAT type of attack? Terry >> I am sorry I forgot to say tinnitus. Audrey has episodes where she hears a bee. Her hearing fluctuates and discrimination goes down. She is very tired the next day and is a little clumsy. It usually takes about 4 - 5 days to regroup back to herself. Some symptoms of Meneire's is tinnitus, veritgo, nausea fluctuating hearing loss/or permenant usually in low frequency. I have also found out no two cases are alike. You do not necessarily have to have all symptoms. I am no means an expert at all this is info I obtain from other adults who have it or know someone. I am looking for actual data or articles or someone who knows a child who has it to give some insight. I hope I helped a bit. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Please Explain Issues? of Meniere's Thanks Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Did they do any kind of testing where they had her look at flashing lights and alternately poured hot and cold water in her ear.....I can tell you, if you have Meniere's it will make you sick as a dog...been there, done that. I was diagnosed with Meniere's after the birth of my daughter 14 years ago. I lost hearing in the mid frequencies and it fluctuates greatly. This year, my feeling of fullness in the ear and inability to hear well migrated to my left ear for the first time and it was really scary because until then, at least I could always hold the phone up to my " good " ear. Even though it's a 30 db loss at 2000 and 40 at 3000, it really impacts me. LCorc16@... wrote: > From: LCorc16@... > > In a message dated 6/20/99 6:47:33 PM Eastern Daylight Time, Theathdi@... > writes: > > << wHAT type of attack? > Terry >> > I am sorry I forgot to say tinnitus. Audrey has episodes where she hears a > bee. Her hearing fluctuates and discrimination goes down. She is very tired > the next day and is a little clumsy. It usually takes about 4 - 5 days to > regroup back to herself. Some symptoms of Meneire's is tinnitus, veritgo, > nausea fluctuating hearing loss/or permenant usually in low frequency. I have > also found out no two cases are alike. You do not necessarily have to have > all symptoms. I am no means an expert at all this is info I obtain from > other adults who have it or know someone. I am looking for actual data or > articles or someone who knows a child who has it to give some insight. I > hope I helped a bit. Lori > > ------------------------------------------------------------------------ > Make your voice heard! > http://www.onelist.com > Sign up for the ONElist Weekly Survey. Go to homepage for details. > ------------------------------------------------------------------------ > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 In a message dated 6/20/99 5:48:25 PM Pacific Daylight Time, LCorc16@... writes: << Some symptoms of Meneire's is tinnitus, veritgo, nausea fluctuating hearing loss/or permenant usually in low frequency. I >> thanks for the info Lori. I dont think she has any of those symptoms Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 In a message dated 6/20/99 9:11:56 PM Eastern Daylight Time, semesky@... writes: << Meniere's it will make you sick as a dog...been there, done that. I was diagnosed with Meniere's after the birth of my daughter 14 years ago. I lost hearing in the mid frequencies and it fluctuates greatly. >> Do you know if you can have various forms of Meniere's? My daughter complains of a belly aches but what three year old doesn't. Hoow do I know if the symptoms are real or not? Do I just rely on this bloodwork? any Ideas? Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 In a message dated 6/21/99 10:54:13 AM Eastern Daylight Time, listenup@... writes: << I took a quick look at the site and if you go to the " Ask the Experts " section, you'll find tons of info on meniere's. You might find what you're looking for there. >> Thanks for the help. I appreciate it. I don't know what I would do without onelist. I have only been on for a couple of weeks and have learned so much and received so much. Thanks a million. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 >In a message dated 6/18/99 7:23:21 PM Pacific Daylight Time, >SDunnstern@... writes: > ><< The key is a > Low Frequency Loss. I am getting information from Ann Marie Tharp at > Vanderbilt who is the countries expert on Low Frequency Loss. When I get >the > info I will send it to you. I do know that it can start early in children >>> >Low frequency loss is the key? Any particular extent? Meaning primarily >mild or moderate or what? My daughter was just diagnosed with low frequency >loss so I am also intereted in info >Tks >Terry I would also be interested in this info, since my daughter also has a mild low frequency loss. But I want to know more about your last sentence: what can start early in children? And how does it progress. Many thanks, Stefanie > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of 170,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >All messages posted to this list are private and confidential. Each post >is the intellectual property of the author and therefore subject to >copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 >From: Theathdi@... > >In a message dated 6/20/99 5:05:50 AM Pacific Daylight Time, >SDunnstern@... writes: > ><< unilateral (80%), fluctuating, and primarily in the lower frequencies in >the > early stages of disease. > >> >My daughter's is bilateral so I assume this doesnt include her. >Terry > Terry, Isn't it frightening to constantly learn about new and horrifying diseases that include hearing loss, and wondering if this is what is affecting your child? I wondered the same thing about my daughter when it first appeared on this post -- like I need one more thing to obsess about! Stefanie >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! >http://www.onelist.com >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >All messages posted to this list are private and confidential. Each post >is the intellectual property of the author and therefore subject to >copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 In a message dated 6/21/99 7:30:10 PM Pacific Daylight Time, scaruso3@... writes: << Terry, Isn't it frightening to constantly learn about new and horrifying diseases that include hearing loss, and wondering if this is what is affecting your child? I wondered the same thing about my daughter when it first appeared on this post -- like I need one more thing to obsess about! Stefani >> Hey I'm with you on that one Stefanie Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Help, I can only pass on the information that I read in the article. I do not know anything except what I read. If you want a copy of the report, send me your snail mail address and I will send you one. That goes for anyone on the list. I do think it is very odd that a lot of us have girls with low frequency mild losses. I think we should put our heads together and see if we can help each other. The odd thing is that the audiogram showed a loss but not the brain stem. Can anyone comment on this? Any of the girls have allergies? I think fluctuates depending on a lot of things. Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 You guys dont want to read the report because it will have you climbing the walls with worry about all the things that cause mild low losses. I know I am. I think it must be allergy. Any comment? Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 In a message dated 6/22/99 5:11:49 PM Eastern Daylight Time, SDunnstern@... writes: << The odd thing is that the audiogram showed a loss but not the brain stem. Can anyone comment on this? >> Hi! did you get my address to send me the article? My daughter's Brainstem showed normal/ borderline too. But hearing is constantly fluctauting when we go in for tests. the audiologist says this is good because it shows a fluctuating hearing loss by comparing it to the brainstem. It just means the day you had her tested her hearing was borderline. It only tells you for that day not for every day. my daughter expereinces a buzzing and it causes the fluctuation. Could your daughter experience a ringing and doesn't know how to explain it? Also, I know with my loss my hearing will fluctuate a bit and then I lose a chunk of my hearing. I am not saying this is what is happening but maybe you might want to inquire about it. Let me know if you find something and I'll pass along any info. too. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 what report? what happened with your daughter's ABR? Re: Meniere's Disease From: SDunnstern@... You guys dont want to read the report because it will have you climbing the walls with worry about all the things that cause mild low losses. I know I am. I think it must be allergy. Any comment? Sheri --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Hayley also has a reverse loss, does that mean low frequency? mary Re: Meniere's Disease From: SDunnstern@... Help, I can only pass on the information that I read in the article. I do not know anything except what I read. If you want a copy of the report, send me your snail mail address and I will send you one. That goes for anyone on the list. I do think it is very odd that a lot of us have girls with low frequency mild losses. I think we should put our heads together and see if we can help each other. The odd thing is that the audiogram showed a loss but not the brain stem. Can anyone comment on this? Any of the girls have allergies? I think fluctuates depending on a lot of things. Sheri --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 In a message dated 6/22/99 2:09:43 PM Pacific Daylight Time, SDunnstern@... writes: << You guys dont want to read the report >> Tell us about the report-cant comment without it Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 In a message dated 6/22/99 2:11:51 PM Pacific Daylight Time, SDunnstern@... writes: << The odd thing is that the audiogram showed a loss but not the brain stem. Can anyone comment on this? Any of the girls have allergies? I think fluctuates depending on a lot of things. Sheri >> This is very odd-I cant imagine the reason....My daughter has sinus problems but never tested her for allergies Terry Quote Link to comment Share on other sites More sharing options...
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