Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Hi to another neuroblastoma parent... Are you also on the ACOR neuroblastoma list? Did you get here by following the link to this list that I posted there? Just curious.... My son Elias was dx'ed with Stage IV neuroblastoma when he was just shy of 2 years old. He is now 4 and has been NED for 28 months. He was treated at Memorial Sloan-Kettering. What stage was Ruby? A 4s? Which protocol did she do? Which hospital? Have you had a complete neuropsych eval done? At MSKCC, they have all the kids do them when they switch over to the late effects team. We had it done much earlier though. I think every kid who has been through neuroblastoma treatment is at high risk for learning problems - because all of the hospitalizations, treatments, side effects, and everything just add up. I would fight the 504 classification tooth and nail. In Elias's evals, which were done when he was just about to turn 3, he was found to have low muscle tone and fatigue. He was about a year delayed in gross and fine motor skills. His cognitive abilities were normal-to-advanced, but his ability to learn, and to show what he had learned, were clearly impacted by his motor skill problems. But more seriously, he also was found to have bilateral moderate-to-severe SN hearing loss in the middle and high frequencies. As you probably know, most kids who do the high risk neuroblastoma protocol end up with this type of hearing loss, so it was not a surprise to us. So Elias now has an IEP, and gets PT, OT, speech therapy, and a SEIT (special education itinerant teacher) in his preschool. He will be heading to kindergarten next year. He uses an FM system in addition to his hearing aids, and loves the FM system. It seems to make a big difference for him when he is in his noisy preschool classroom. Also, do you have a copy of Candlelighters book " Educating the Child With Cancer : A Guide for Parents and Teachers " ? You can get it for free from them if you join. It is full of useful info. Unfortunately, our kids are at high risk for educational problems all the way down the line. Also, if you are on the ACOR list, did you get a copy of Shirley's " letter to the teachers " ? It is a great letter for educating teachers about hearing loss problems. Bonnie mom to Elias, 2/15/02, dx Stage IV NB 12/03, 5 rounds chemo on N8 at MSKCC, NED 5/04, 13 rounds 3F8 antibodies and no HAMA ever, off treatment 6/06 and to Malachi, 3/1/00, my little pundit. > > Hello All- > > I have been lurking for a while, but now it's time to introduce > myself and ask for some advice. My daughter, Ruby, is five years > old. I am here because she has high-frequency hearing loss in both > ears as a side effect of chemotherapy and radiation. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Hi - Wow, your Ruby sounds like a true gem and she sounds lucky to have the parents that she does. I'm kind of confused by your description of her loss. Is the loss profound (100 db+) above 4-5K or is the only place there is loss from 4-5K and up? What is the cause of all the noise in her classroom? Is it kid noise? Noisy bad acoustics type of a room? Is the class out of control or noisy behavior wise? The fact that Ruby is asking other kids questions about directions lets you know she is having some serious trouble hearing in this classroom. An FM or perhaps even a soundfield might be something to consider. Sometimes, usually depending on the teacher, a soundfield can quiet down a class, but with the wrong teacher, the kids just get louder so the soundfield just adds to the cacophony. Perhaps an personal FM with low or no gain would benefit her. They are used for kids without hearing loss too, kids with auditory processing issues etc. Even kids with unilateral and " minimal " (16-25 dB) losses have nearly a 50% chance of having to repeat a grade, so the cumulative effects of not hearing what is going on can be huge. Kids ability to understand speech in noise is also very variable. My daughter comprehends nearly 100% in a quiet environment but only comprehends 40% in noise. Most of the grammatical information in English like tense, plurality and possession happen using the very quietest and highest frequency sounds like s and t. So if the hearing loss is affecting her ability to hear ONLY these letters, it will still affect her quite a bit. And the noise in the classroom will drown out these sounds first as well. Do you have a good pediatric or school audiologist who could do some functional testing of Ruby in and out of noise? in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Bonnie - can you share Shirley's letter to the teachers?? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 This is someone who isn't on this list, so I would want to ask her permission, and also make sure that everything that is identifying is out of the letter. She has been doing this for many years, and her main point was that you have to educate the teachers every year, year after year. > > Bonnie - can you share Shirley's letter to the teachers?? Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 This is someone who isn't on this list, so I would want to ask her permission, and also make sure that everything that is identifying is out of the letter. She has been doing this for many years, and her main point was that you have to educate the teachers every year, year after year. > > Bonnie - can you share Shirley's letter to the teachers?? Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 In a message dated 9/20/2006 9:20:51 A.M. Eastern Standard Time, elbert@... writes: We have a meeting this Friday to discuss Ruby's IEP with the school. Despite her paralysis and other issues, I suspect they are going to want to give her a 504 Plan rather than an IEP and I am, honestly, not sure what I want from them. The physical therapists they have provided to date have not inspired much confidence, so that might not be worth pursuing. But Ruby still tires very easily and needs extra time and accommodation to get places and be involved in things. She is clearly not to the point of needing an FM system, but should we be demanding seating near the teacher and anything else like that? A 504 plan may be just what Ruby should have. An IEP is for a child who has learning disabilities, and while hearing loss is a disability, it isn't always a " learning " one. It is because of her paralysis and other issues (not despite them) that they are considering the 504 classification. That is the type of thing a 504 was initially designed to address. You should probably be requesting a variety of things, but I would start with asking for a full assessment by a TOD or D/HOH facility that knows about hearing loss in children. Our kids are masters at developing coping skills that can take them pretty far. But when they start to fail, they fail quickly. And as long as our kids not failing, the schools are not going to step in and try to figure out what they need. There are just too many kids with needs and the ones who obviously need help are going to be the ones who get it first. Our son Ian is bright, but no genius -- don't get me wrong, the mom in me thinks the sun rises and sets on the boy, but the truth is he is a strong but somewhat average student. And for a kid with a hearing loss, that can be an amazing feat. (When I consider the issues that Ian deals with daily, being a high 80s to low 90s student is quite an accomplishment!) But my point in bringing up his academic abilities is because Ian is one of the kids who was falling through the cracks. Not quite a bad enough student to warrant attention or intervention, but enough struggling that by the end of 2nd grade it was suggested we retain him. I had to fight to get him tested so we could figure out if there was a processing speed problem (there was) and once his issues were identified, fight to get him classified. Not because they don't classify kids, but because he was very borderline and they wanted to retain and/or offer readi-made solutions before hiring D/HOH services, which are more expensive. My point here is that it's not easy to determine what these kids are missing. We know them better than the schools and we parents aren't qualified. We see something is missing, but often can't pout our finger on it. So I would request an assessment be done by D/HOH professionals. That way you'll know exactly what Ruby is dealing with, and how she's faking it. She sounds like a very special little lady and I'm guessing she's developed some great coping skills! But that doesn't mean she doesn't need some supports. And in order to get those supports, you have to document the need. An assessment will do that. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 In a message dated 9/20/2006 9:20:51 A.M. Eastern Standard Time, elbert@... writes: We have a meeting this Friday to discuss Ruby's IEP with the school. Despite her paralysis and other issues, I suspect they are going to want to give her a 504 Plan rather than an IEP and I am, honestly, not sure what I want from them. The physical therapists they have provided to date have not inspired much confidence, so that might not be worth pursuing. But Ruby still tires very easily and needs extra time and accommodation to get places and be involved in things. She is clearly not to the point of needing an FM system, but should we be demanding seating near the teacher and anything else like that? A 504 plan may be just what Ruby should have. An IEP is for a child who has learning disabilities, and while hearing loss is a disability, it isn't always a " learning " one. It is because of her paralysis and other issues (not despite them) that they are considering the 504 classification. That is the type of thing a 504 was initially designed to address. You should probably be requesting a variety of things, but I would start with asking for a full assessment by a TOD or D/HOH facility that knows about hearing loss in children. Our kids are masters at developing coping skills that can take them pretty far. But when they start to fail, they fail quickly. And as long as our kids not failing, the schools are not going to step in and try to figure out what they need. There are just too many kids with needs and the ones who obviously need help are going to be the ones who get it first. Our son Ian is bright, but no genius -- don't get me wrong, the mom in me thinks the sun rises and sets on the boy, but the truth is he is a strong but somewhat average student. And for a kid with a hearing loss, that can be an amazing feat. (When I consider the issues that Ian deals with daily, being a high 80s to low 90s student is quite an accomplishment!) But my point in bringing up his academic abilities is because Ian is one of the kids who was falling through the cracks. Not quite a bad enough student to warrant attention or intervention, but enough struggling that by the end of 2nd grade it was suggested we retain him. I had to fight to get him tested so we could figure out if there was a processing speed problem (there was) and once his issues were identified, fight to get him classified. Not because they don't classify kids, but because he was very borderline and they wanted to retain and/or offer readi-made solutions before hiring D/HOH services, which are more expensive. My point here is that it's not easy to determine what these kids are missing. We know them better than the schools and we parents aren't qualified. We see something is missing, but often can't pout our finger on it. So I would request an assessment be done by D/HOH professionals. That way you'll know exactly what Ruby is dealing with, and how she's faking it. She sounds like a very special little lady and I'm guessing she's developed some great coping skills! But that doesn't mean she doesn't need some supports. And in order to get those supports, you have to document the need. An assessment will do that. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 In a message dated 9/20/2006 9:20:51 A.M. Eastern Standard Time, elbert@... writes: We have a meeting this Friday to discuss Ruby's IEP with the school. Despite her paralysis and other issues, I suspect they are going to want to give her a 504 Plan rather than an IEP and I am, honestly, not sure what I want from them. The physical therapists they have provided to date have not inspired much confidence, so that might not be worth pursuing. But Ruby still tires very easily and needs extra time and accommodation to get places and be involved in things. She is clearly not to the point of needing an FM system, but should we be demanding seating near the teacher and anything else like that? A 504 plan may be just what Ruby should have. An IEP is for a child who has learning disabilities, and while hearing loss is a disability, it isn't always a " learning " one. It is because of her paralysis and other issues (not despite them) that they are considering the 504 classification. That is the type of thing a 504 was initially designed to address. You should probably be requesting a variety of things, but I would start with asking for a full assessment by a TOD or D/HOH facility that knows about hearing loss in children. Our kids are masters at developing coping skills that can take them pretty far. But when they start to fail, they fail quickly. And as long as our kids not failing, the schools are not going to step in and try to figure out what they need. There are just too many kids with needs and the ones who obviously need help are going to be the ones who get it first. Our son Ian is bright, but no genius -- don't get me wrong, the mom in me thinks the sun rises and sets on the boy, but the truth is he is a strong but somewhat average student. And for a kid with a hearing loss, that can be an amazing feat. (When I consider the issues that Ian deals with daily, being a high 80s to low 90s student is quite an accomplishment!) But my point in bringing up his academic abilities is because Ian is one of the kids who was falling through the cracks. Not quite a bad enough student to warrant attention or intervention, but enough struggling that by the end of 2nd grade it was suggested we retain him. I had to fight to get him tested so we could figure out if there was a processing speed problem (there was) and once his issues were identified, fight to get him classified. Not because they don't classify kids, but because he was very borderline and they wanted to retain and/or offer readi-made solutions before hiring D/HOH services, which are more expensive. My point here is that it's not easy to determine what these kids are missing. We know them better than the schools and we parents aren't qualified. We see something is missing, but often can't pout our finger on it. So I would request an assessment be done by D/HOH professionals. That way you'll know exactly what Ruby is dealing with, and how she's faking it. She sounds like a very special little lady and I'm guessing she's developed some great coping skills! But that doesn't mean she doesn't need some supports. And in order to get those supports, you have to document the need. An assessment will do that. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi Bonnie- Thanks for the reply and hello. In answer to your questions: Yes, I did find this list through you note on the ACOR Neuroblastoma list. Thanks. I have been reading this one a bit, but have been so busy and it is all such a new " language " to me, that I haven't been able to absorb it. But now I think it is time I get going up the learning curve about this hearing loss stuff! And, yes, Ruby has had a full neuropysch work-up. She did the tandem (two) transplant protocol at CHOP and they do a full eval before the first transplant. Actually, Ruby's was done while she was getting pre-medicated and starting the conditioning chemo on day -5 of that first transplant... I was amazed she could deal with it since it was about three hours of testing and she is very shy, but the neuropsych fellow who did it was terrific. So we know she tests as very smart and in may ways could place into about third grade, but she obviously is way behind in gross motor (since she has lower limb paralysis) and even showed some odd results for hand/fine motor which can't be explained by her spinal cord injury, so we are watching that carefully. You also asked about staging of the neuroblastoma. Complicated question in Ruby's case. First diagnosis came with rapid onset paralysis and emergency spinal cord decompression surgery when she was two days shy of four months old. Depending on hwo you read the radiology, she could have been Stage 2A or 2B. Most prognostic markers suggested she was low risk (young age, NMYC not ampkified, favorable Shimada histology). Only really " bad " marker was ploidy. She was treated here in Baltimore at the University of MD Hospital at the time. It is a long story, but it turns out that the general surgeon and the radiology team both missed extensive tumor (that I found looking at her films by my kitchen light!). Not good. The residual tumor then began to progress, so we went to Sloan and CHOP for opinions. Opinions were similar. Basically do four rounds of chemo or watch it a little longer to see if it matures or regresses. We ended up sticking with the CHOP team and got ready for chemo. Then the tumor stopped growing, so we waited. Then it started again and we scheduled port placement and chemo. Then it stopped again. Then we got two years without growth and Maris declared that Ruby had met the challenges of the cancer and it was now benign. But within about four months, she presented with pain and we found that she had new masses and extensive metastatic disease (skull, bones everywhere, marrow greater than 99% filled, lymph system...). The new masses were creating pressure between here heart and spine. So she was rediagnosed at that time as Stage 4 and the question became was this a whole new case of neuroblastoma or was she a very late progression of a low stage case. No way to tell. Both extremely rare (about 7 cases like her in the thousands of COG kids experiences). The fact that my mother had a spinal tumor as a teenager made Maris initially tilt towards Ruby maybe being genetically predisposed and this being a wholw new, second case. But he seems to have backed off that and really no one knows and there is no way to know. Her blood and tumor material is in the lab, but no one knows what to look for. Phew... now I am far afield. Anyway, you are right, obviously, she is at risk for the many things kids who have chemo and radiation always face. Since the tandem protocol includes total body irradiation (including head), growth and cognitive effects are up near the top of the list. But we felt we had no choice, so we just keep marching. The fact that she had lots of nerve problems from the initial paralysis coupled with the skull involvement to argue against trying an antibody approach at Sloan (which is way to complicated to explain here), so we ended up with transplants. At the time we opted in, the data from the randomized trials were also quite clear to make it the best option, although the more recent data are less clear and, obviously, as more data come in it may prove to not be the best choice... but that is why you have to do the studies afterall. And I do have Shirley's letter. She very kindly sent it to many of us, I think. It was really helpful for me to read. So thanks for the info on Elias. In some ways, what I get from that is that it is good to do things like FM systems at as young an age as possible. Just makes them more " natural " to the kids. As if they are more willing to accept interventions when they are still too young to be too self conscious about them or something. Oops... gotta run. Work awaits. But thanks again for getting me to this list and for the info! Give Elias a hug for me. I am very fond of neuroblastoma kids! Best- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi - Thanks for the reply. I can tell right away that I have to go learn a few things and clarify. I have the audiology report in front of me, but I have to figure out how to better describe the hearing loss to you. Here's what I see: 1. Otoacoustic Emissions (OAE) testing shows that the emissions are completely absent above 5KHz and present below 4 KHz, with inbetween frequencies apparently less clear. Loss is bilateral (not surprising since it is from chemo and radiation and not something anatomical or give to just one ear). 2. Audiometric test results show normal sensitivity to pure tones up to 4KHz and then a steep drop for the rest of the high frequency range (tested up to 8KHz). It is on a plot which seems to show the normal sensitivity range shaded in gray as being as low as 15 dB below a zero line. Where Ruby drops below that shaded area, she goes as low as 55-60 dB. I obviously need to get a little educated on how to read an audiogram! But if I read it right, I guess I can tell you that her loss is only above 4KHz as of the test date and it gets " bad " , but maybe not what would be called " profound " ? I, obviously, also need to learn the lingo a bit and figure out what " profound " means in this setting! Your thoughts on FM and soundfield are very interesting. Her kindergarten setting makes it hard for me to see how to get an FM system to fit in. They aren't sitting in regular places very much of the time. And she doesn't wear hearing aids, so I also don't know how she would easily wear a receiver. And I have no idea what a soundfield is! So I am off to google it! There is no school audiologist, so I am also going to have to look into that. Thanks again. You have given me much to think about already. Best, > > Hi - Wow, your Ruby sounds like a true gem and she sounds lucky to have the parents that she does. I'm kind of confused by your description of her loss. Is the loss profound (100 db+) above 4-5K or is the only place there is loss from 4-5K and up? What is the cause of all the noise in her classroom? Is it kid noise? Noisy bad acoustics type of a room? Is the class out of control or noisy behavior wise? The fact that Ruby is asking other kids questions about directions lets you know she is having some serious trouble hearing in this classroom. An FM or perhaps even a soundfield might be something to consider. Sometimes, usually depending on the teacher, a soundfield can quiet down a class, but with the wrong teacher, the kids just get louder so the soundfield just adds to the cacophony. Perhaps an personal FM with low or no gain would benefit her. They are used for kids without hearing loss too, kids with auditory processing issues etc. Even kids with unilateral and " minimal " (16-25 dB) losses have nearly a 50% chance of having to repeat a grade, so the cumulative effects of not hearing what is going on can be huge. Kids ability to understand speech in noise is also very variable. My daughter comprehends nearly 100% in a quiet environment but only comprehends 40% in noise. Most of the grammatical information in English like tense, plurality and possession happen using the very quietest and highest frequency sounds like s and t. So if the hearing loss is affecting her ability to hear ONLY these letters, it will still affect her quite a bit. And the noise in the classroom will drown out these sounds first as well. Do you have a good pediatric or school audiologist who could do some functional testing of Ruby in and out of noise? in GA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 In a message dated 9/21/2006 10:15:06 A.M. Eastern Standard Time, tracey@... writes: The best advice I can give you is to make sure that you have a TOD or an educational audiologist consulting with the school to make sure the 504 plan is appropriate. Request a functional hearing test in the classroom. I agree about getting the assessment and having a TOD involved. I just want to add that our kids can be classified under both IDEA and 504 at the same time. It is not terribly common, but it is done. So, this doesn't have to be an " either/or " situation. Each classification can address specific needs and work together to support the child. Perhaps Ruby is one of those kids who does need dual support plans. But again, there needs to be some diagnostic testing to determine that. I personally like outside assessments because I had to fight my district for everything and don't really trust their choice of professionals. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 In a message dated 9/21/2006 10:15:06 A.M. Eastern Standard Time, tracey@... writes: The best advice I can give you is to make sure that you have a TOD or an educational audiologist consulting with the school to make sure the 504 plan is appropriate. Request a functional hearing test in the classroom. I agree about getting the assessment and having a TOD involved. I just want to add that our kids can be classified under both IDEA and 504 at the same time. It is not terribly common, but it is done. So, this doesn't have to be an " either/or " situation. Each classification can address specific needs and work together to support the child. Perhaps Ruby is one of those kids who does need dual support plans. But again, there needs to be some diagnostic testing to determine that. I personally like outside assessments because I had to fight my district for everything and don't really trust their choice of professionals. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 In a message dated 9/21/2006 10:15:06 A.M. Eastern Standard Time, tracey@... writes: The best advice I can give you is to make sure that you have a TOD or an educational audiologist consulting with the school to make sure the 504 plan is appropriate. Request a functional hearing test in the classroom. I agree about getting the assessment and having a TOD involved. I just want to add that our kids can be classified under both IDEA and 504 at the same time. It is not terribly common, but it is done. So, this doesn't have to be an " either/or " situation. Each classification can address specific needs and work together to support the child. Perhaps Ruby is one of those kids who does need dual support plans. But again, there needs to be some diagnostic testing to determine that. I personally like outside assessments because I had to fight my district for everything and don't really trust their choice of professionals. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 You don't need a regular place to use an FM system! The way that Elias's works is this : he has tiny " boots " that hook into his hearing aids. His teacher wears a small unit with a mike which picks up her voice and transmits it to the hearing aids. During story time, or music time, or whenever her voice needs to be heard loud and clear above the din, that is when it is useful. I use it in the car too, so we can talk easily above the noise of the engine and the iPod (my older kid has to listen to the Monkees every day). Sometimes, I wish I had an FM system too! I'll post more on the neuroblastoma stuff and hearing in a minute, but I just wanted you to know how easily an FM system can integrate into a less-than-structured classroom. Bonnie > > > Your thoughts on FM and soundfield are very interesting. Her > kindergarten setting makes it hard for me to see how to get an FM > system to fit in. They aren't sitting in regular places very much of > the time. And she doesn't wear hearing aids, so I also don't know how > she would easily wear a receiver. And I have no idea what a > soundfield is! So I am off to google it! There is no school > audiologist, so I am also going to have to look into that. > > Thanks again. You have given me much to think about already. > > Best, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi , Well you have clearly demonstrated to all of us that not all husbands/Dads are emotionally removed and uninvolved in their children's health/education decisions. Your love and devotion to your daughter and your ability to express it are admirable. She is a lucky little girl. Regarding the hearing loss and the affect in the classroom. I have one of those kids that fell through the cracks. He was not fitted for hearing aids because of the configuration of his loss. The school fought our audiologist recommendation for an FM system, as they felt his loss did not have educational significance. Of course the people making these decisions at school know NOTHING about hearing loss and how it affects kids in the classroom. The best advice I can give you is to make sure that you have a TOD or an educational audiologist consulting with the school to make sure the 504 plan is appropriate. Request a functional hearing test in the classroom. My son is now 10. He was diagnose at age 4. We finally have someone consulting with the school and only now are the correct assessments being done and the proper accommodations being provided. As a result, my son has some big swiss cheese holes in his language/processing skills. I suspect he may be going to an IEP from the 504 when we meet next week. Probably never would have happened if we would have done things right from Kindergarten. Good Luck! Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi , I know how you feel about learning the lingo. I still don't know if I am always using the correct terminology. I just wanted to give you some info that I have on the back of my daughter 's audiograms. The chart is a classification of hearing loss and states: 0-25dB Normal Limits 26-40dB Mild Hearing Loss 41-55dB Moderate Hearing Loss 56-70dB Moderately Severe Hearing Loss 71-90dB Severe Hearing Loss 91dB + Profound Hearing Loss I am new to this group as well and have been reading all of the very informative emails that have been coming through. I am really glad I joined this group! Centreville, MD > >Reply-To: Listen-Up >To: Listen-Up >Subject: Re: Introduction: Ruby's father >Date: Thu, 21 Sep 2006 13:36:06 -0000 > >Hi - > >Thanks for the reply. I can tell right away that I have to go learn a >few things and clarify. I have the audiology report in front of me, >but I have to figure out how to better describe the hearing loss to you. > >Here's what I see: > >1. Otoacoustic Emissions (OAE) testing shows that the emissions are >completely absent above 5KHz and present below 4 KHz, with inbetween >frequencies apparently less clear. Loss is bilateral (not surprising >since it is from chemo and radiation and not something anatomical or >give to just one ear). > >2. Audiometric test results show normal sensitivity to pure tones up >to 4KHz and then a steep drop for the rest of the high frequency range >(tested up to 8KHz). It is on a plot which seems to show the normal >sensitivity range shaded in gray as being as low as 15 dB below a zero >line. Where Ruby drops below that shaded area, she goes as low as >55-60 dB. I obviously need to get a little educated on how to read an >audiogram! But if I read it right, I guess I can tell you that her >loss is only above 4KHz as of the test date and it gets " bad " , but >maybe not what would be called " profound " ? I, obviously, also need to >learn the lingo a bit and figure out what " profound " means in this >setting! > >Your thoughts on FM and soundfield are very interesting. Her >kindergarten setting makes it hard for me to see how to get an FM >system to fit in. They aren't sitting in regular places very much of >the time. And she doesn't wear hearing aids, so I also don't know how >she would easily wear a receiver. And I have no idea what a >soundfield is! So I am off to google it! There is no school >audiologist, so I am also going to have to look into that. > >Thanks again. You have given me much to think about already. > >Best, > > > > > > > > Hi - Wow, your Ruby sounds like a true gem and she sounds >lucky to have the parents that she does. I'm kind of confused by your >description of her loss. Is the loss profound (100 db+) above 4-5K or >is the only place there is loss from 4-5K and up? What is the cause >of all the noise in her classroom? Is it kid noise? Noisy bad >acoustics type of a room? Is the class out of control or noisy >behavior wise? The fact that Ruby is asking other kids questions >about directions lets you know she is having some serious trouble >hearing in this classroom. An FM or perhaps even a soundfield might >be something to consider. Sometimes, usually depending on the >teacher, a soundfield can quiet down a class, but with the wrong >teacher, the kids just get louder so the soundfield just adds to the >cacophony. Perhaps an personal FM with low or no gain would benefit >her. They are used for kids without hearing loss too, kids with >auditory processing issues etc. Even kids with unilateral and > " minimal " (16-25 dB) losses have nearly a 50% chance of having to >repeat a grade, so the cumulative effects of not hearing what is >going on can be huge. Kids ability to understand speech in noise is >also very variable. My daughter comprehends nearly 100% in a quiet >environment but only comprehends 40% in noise. Most of the >grammatical information in English like tense, plurality and >possession happen using the very quietest and highest frequency sounds >like s and t. So if the hearing loss is affecting her ability to hear >ONLY these letters, it will still affect her quite a bit. And the >noise in the classroom will drown out these sounds first as well. Do >you have a good pediatric or school audiologist who could do some >functional testing of Ruby in and out of noise? in GA > > > > > > _________________________________________________________________ Find a local pizza place, music store, museum and more…then map the best route! http://local.live.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi , I know how you feel about learning the lingo. I still don't know if I am always using the correct terminology. I just wanted to give you some info that I have on the back of my daughter 's audiograms. The chart is a classification of hearing loss and states: 0-25dB Normal Limits 26-40dB Mild Hearing Loss 41-55dB Moderate Hearing Loss 56-70dB Moderately Severe Hearing Loss 71-90dB Severe Hearing Loss 91dB + Profound Hearing Loss I am new to this group as well and have been reading all of the very informative emails that have been coming through. I am really glad I joined this group! Centreville, MD > >Reply-To: Listen-Up >To: Listen-Up >Subject: Re: Introduction: Ruby's father >Date: Thu, 21 Sep 2006 13:36:06 -0000 > >Hi - > >Thanks for the reply. I can tell right away that I have to go learn a >few things and clarify. I have the audiology report in front of me, >but I have to figure out how to better describe the hearing loss to you. > >Here's what I see: > >1. Otoacoustic Emissions (OAE) testing shows that the emissions are >completely absent above 5KHz and present below 4 KHz, with inbetween >frequencies apparently less clear. Loss is bilateral (not surprising >since it is from chemo and radiation and not something anatomical or >give to just one ear). > >2. Audiometric test results show normal sensitivity to pure tones up >to 4KHz and then a steep drop for the rest of the high frequency range >(tested up to 8KHz). It is on a plot which seems to show the normal >sensitivity range shaded in gray as being as low as 15 dB below a zero >line. Where Ruby drops below that shaded area, she goes as low as >55-60 dB. I obviously need to get a little educated on how to read an >audiogram! But if I read it right, I guess I can tell you that her >loss is only above 4KHz as of the test date and it gets " bad " , but >maybe not what would be called " profound " ? I, obviously, also need to >learn the lingo a bit and figure out what " profound " means in this >setting! > >Your thoughts on FM and soundfield are very interesting. Her >kindergarten setting makes it hard for me to see how to get an FM >system to fit in. They aren't sitting in regular places very much of >the time. And she doesn't wear hearing aids, so I also don't know how >she would easily wear a receiver. And I have no idea what a >soundfield is! So I am off to google it! There is no school >audiologist, so I am also going to have to look into that. > >Thanks again. You have given me much to think about already. > >Best, > > > > > > > > Hi - Wow, your Ruby sounds like a true gem and she sounds >lucky to have the parents that she does. I'm kind of confused by your >description of her loss. Is the loss profound (100 db+) above 4-5K or >is the only place there is loss from 4-5K and up? What is the cause >of all the noise in her classroom? Is it kid noise? Noisy bad >acoustics type of a room? Is the class out of control or noisy >behavior wise? The fact that Ruby is asking other kids questions >about directions lets you know she is having some serious trouble >hearing in this classroom. An FM or perhaps even a soundfield might >be something to consider. Sometimes, usually depending on the >teacher, a soundfield can quiet down a class, but with the wrong >teacher, the kids just get louder so the soundfield just adds to the >cacophony. Perhaps an personal FM with low or no gain would benefit >her. They are used for kids without hearing loss too, kids with >auditory processing issues etc. Even kids with unilateral and > " minimal " (16-25 dB) losses have nearly a 50% chance of having to >repeat a grade, so the cumulative effects of not hearing what is >going on can be huge. Kids ability to understand speech in noise is >also very variable. My daughter comprehends nearly 100% in a quiet >environment but only comprehends 40% in noise. Most of the >grammatical information in English like tense, plurality and >possession happen using the very quietest and highest frequency sounds >like s and t. So if the hearing loss is affecting her ability to hear >ONLY these letters, it will still affect her quite a bit. And the >noise in the classroom will drown out these sounds first as well. Do >you have a good pediatric or school audiologist who could do some >functional testing of Ruby in and out of noise? in GA > > > > > > _________________________________________________________________ Find a local pizza place, music store, museum and more…then map the best route! http://local.live.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi , I know how you feel about learning the lingo. I still don't know if I am always using the correct terminology. I just wanted to give you some info that I have on the back of my daughter 's audiograms. The chart is a classification of hearing loss and states: 0-25dB Normal Limits 26-40dB Mild Hearing Loss 41-55dB Moderate Hearing Loss 56-70dB Moderately Severe Hearing Loss 71-90dB Severe Hearing Loss 91dB + Profound Hearing Loss I am new to this group as well and have been reading all of the very informative emails that have been coming through. I am really glad I joined this group! Centreville, MD > >Reply-To: Listen-Up >To: Listen-Up >Subject: Re: Introduction: Ruby's father >Date: Thu, 21 Sep 2006 13:36:06 -0000 > >Hi - > >Thanks for the reply. I can tell right away that I have to go learn a >few things and clarify. I have the audiology report in front of me, >but I have to figure out how to better describe the hearing loss to you. > >Here's what I see: > >1. Otoacoustic Emissions (OAE) testing shows that the emissions are >completely absent above 5KHz and present below 4 KHz, with inbetween >frequencies apparently less clear. Loss is bilateral (not surprising >since it is from chemo and radiation and not something anatomical or >give to just one ear). > >2. Audiometric test results show normal sensitivity to pure tones up >to 4KHz and then a steep drop for the rest of the high frequency range >(tested up to 8KHz). It is on a plot which seems to show the normal >sensitivity range shaded in gray as being as low as 15 dB below a zero >line. Where Ruby drops below that shaded area, she goes as low as >55-60 dB. I obviously need to get a little educated on how to read an >audiogram! But if I read it right, I guess I can tell you that her >loss is only above 4KHz as of the test date and it gets " bad " , but >maybe not what would be called " profound " ? I, obviously, also need to >learn the lingo a bit and figure out what " profound " means in this >setting! > >Your thoughts on FM and soundfield are very interesting. Her >kindergarten setting makes it hard for me to see how to get an FM >system to fit in. They aren't sitting in regular places very much of >the time. And she doesn't wear hearing aids, so I also don't know how >she would easily wear a receiver. And I have no idea what a >soundfield is! So I am off to google it! There is no school >audiologist, so I am also going to have to look into that. > >Thanks again. You have given me much to think about already. > >Best, > > > > > > > > Hi - Wow, your Ruby sounds like a true gem and she sounds >lucky to have the parents that she does. I'm kind of confused by your >description of her loss. Is the loss profound (100 db+) above 4-5K or >is the only place there is loss from 4-5K and up? What is the cause >of all the noise in her classroom? Is it kid noise? Noisy bad >acoustics type of a room? Is the class out of control or noisy >behavior wise? The fact that Ruby is asking other kids questions >about directions lets you know she is having some serious trouble >hearing in this classroom. An FM or perhaps even a soundfield might >be something to consider. Sometimes, usually depending on the >teacher, a soundfield can quiet down a class, but with the wrong >teacher, the kids just get louder so the soundfield just adds to the >cacophony. Perhaps an personal FM with low or no gain would benefit >her. They are used for kids without hearing loss too, kids with >auditory processing issues etc. Even kids with unilateral and > " minimal " (16-25 dB) losses have nearly a 50% chance of having to >repeat a grade, so the cumulative effects of not hearing what is >going on can be huge. Kids ability to understand speech in noise is >also very variable. My daughter comprehends nearly 100% in a quiet >environment but only comprehends 40% in noise. Most of the >grammatical information in English like tense, plurality and >possession happen using the very quietest and highest frequency sounds >like s and t. So if the hearing loss is affecting her ability to hear >ONLY these letters, it will still affect her quite a bit. And the >noise in the classroom will drown out these sounds first as well. Do >you have a good pediatric or school audiologist who could do some >functional testing of Ruby in and out of noise? in GA > > > > > > _________________________________________________________________ Find a local pizza place, music store, museum and more…then map the best route! http://local.live.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 , just read your post to Bonnie, you and Ruby have sure been through a lot - most of us can't even imagine I'm sure. Here's some links to things to help you understand the audiogram. www.michdhh.org Put " ross " in the search space and go to the RRRRRR entry. It's a great explanation by Mark Ross who is a HOH professor. http://www.capitolent.net/berlin.htm Another explanation with a little different twist by Berlin, an eminent audiologist. Here's something from Carol Flexer (professor of audiology)on minimal loss - but it has great applicability to a child with any level of loss in a classroom. Anything by Carol Flexer is great, she is an audiologist that writes a lot about little kids and hearing and also kids in school with hearing loss. She has written several great books, one is " Facilitating Hearing and Listening in young Children " . The following articles will give you a little taste of her expertise. http://www.totalhearing.net/child_faq_management.htm www.lightspeed-tek.com/files%5CFlexer_Interview_1_16_06.pdf After reading through these you may wonder about the possibility of getting aids for Ruby. There is a new type of aid on the market that is made for this type of loss. They are called " open fitting " and are just for high frequency losses. I know there is one little guy on the list who has them. Also remember that you should be able to get the aids on a trial basis - usually 30 or 60 days. Is your current audiologist a pediatric audiologist? They also make FM's that are for kids without hearing aids, they use headphones or an ear piece like an ear mold. I think Phonak's is called " edulink " http://www.phonak.com/professional/productsp/fm/edulink_p.htm Happy hunting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 , just read your post to Bonnie, you and Ruby have sure been through a lot - most of us can't even imagine I'm sure. Here's some links to things to help you understand the audiogram. www.michdhh.org Put " ross " in the search space and go to the RRRRRR entry. It's a great explanation by Mark Ross who is a HOH professor. http://www.capitolent.net/berlin.htm Another explanation with a little different twist by Berlin, an eminent audiologist. Here's something from Carol Flexer (professor of audiology)on minimal loss - but it has great applicability to a child with any level of loss in a classroom. Anything by Carol Flexer is great, she is an audiologist that writes a lot about little kids and hearing and also kids in school with hearing loss. She has written several great books, one is " Facilitating Hearing and Listening in young Children " . The following articles will give you a little taste of her expertise. http://www.totalhearing.net/child_faq_management.htm www.lightspeed-tek.com/files%5CFlexer_Interview_1_16_06.pdf After reading through these you may wonder about the possibility of getting aids for Ruby. There is a new type of aid on the market that is made for this type of loss. They are called " open fitting " and are just for high frequency losses. I know there is one little guy on the list who has them. Also remember that you should be able to get the aids on a trial basis - usually 30 or 60 days. Is your current audiologist a pediatric audiologist? They also make FM's that are for kids without hearing aids, they use headphones or an ear piece like an ear mold. I think Phonak's is called " edulink " http://www.phonak.com/professional/productsp/fm/edulink_p.htm Happy hunting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 , just read your post to Bonnie, you and Ruby have sure been through a lot - most of us can't even imagine I'm sure. Here's some links to things to help you understand the audiogram. www.michdhh.org Put " ross " in the search space and go to the RRRRRR entry. It's a great explanation by Mark Ross who is a HOH professor. http://www.capitolent.net/berlin.htm Another explanation with a little different twist by Berlin, an eminent audiologist. Here's something from Carol Flexer (professor of audiology)on minimal loss - but it has great applicability to a child with any level of loss in a classroom. Anything by Carol Flexer is great, she is an audiologist that writes a lot about little kids and hearing and also kids in school with hearing loss. She has written several great books, one is " Facilitating Hearing and Listening in young Children " . The following articles will give you a little taste of her expertise. http://www.totalhearing.net/child_faq_management.htm www.lightspeed-tek.com/files%5CFlexer_Interview_1_16_06.pdf After reading through these you may wonder about the possibility of getting aids for Ruby. There is a new type of aid on the market that is made for this type of loss. They are called " open fitting " and are just for high frequency losses. I know there is one little guy on the list who has them. Also remember that you should be able to get the aids on a trial basis - usually 30 or 60 days. Is your current audiologist a pediatric audiologist? They also make FM's that are for kids without hearing aids, they use headphones or an ear piece like an ear mold. I think Phonak's is called " edulink " http://www.phonak.com/professional/productsp/fm/edulink_p.htm Happy hunting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 , one little twist on the audiogram - 25dB as normal is for adults, for kids the cut off is 15 dB and 16-25 dB is considered " minimal " hearing loss. Re: Introduction: Ruby's father >>Date: Thu, 21 Sep 2006 13:36:06 -0000 >> >>Hi - >> >>Thanks for the reply. I can tell right away that I have to go learn a >>few things and clarify. I have the audiology report in front of me, >>but I have to figure out how to better describe the hearing loss to you. >> >>Here's what I see: >> >>1. Otoacoustic Emissions (OAE) testing shows that the emissions are >>completely absent above 5KHz and present below 4 KHz, with inbetween >>frequencies apparently less clear. Loss is bilateral (not surprising >>since it is from chemo and radiation and not something anatomical or >>give to just one ear). >> >>2. Audiometric test results show normal sensitivity to pure tones up >>to 4KHz and then a steep drop for the rest of the high frequency range >>(tested up to 8KHz). It is on a plot which seems to show the normal >>sensitivity range shaded in gray as being as low as 15 dB below a zero >>line. Where Ruby drops below that shaded area, she goes as low as >>55-60 dB. I obviously need to get a little educated on how to read an >>audiogram! But if I read it right, I guess I can tell you that her >>loss is only above 4KHz as of the test date and it gets " bad " , but >>maybe not what would be called " profound " ? I, obviously, also need to >>learn the lingo a bit and figure out what " profound " means in this >>setting! >> >>Your thoughts on FM and soundfield are very interesting. Her >>kindergarten setting makes it hard for me to see how to get an FM >>system to fit in. They aren't sitting in regular places very much of >>the time. And she doesn't wear hearing aids, so I also don't know how >>she would easily wear a receiver. And I have no idea what a >>soundfield is! So I am off to google it! There is no school >>audiologist, so I am also going to have to look into that. >> >>Thanks again. You have given me much to think about already. >> >>Best, >> >> >> >> >> > >> > Hi - Wow, your Ruby sounds like a true gem and she sounds >>lucky to have the parents that she does. I'm kind of confused by your >>description of her loss. Is the loss profound (100 db+) above 4-5K or >>is the only place there is loss from 4-5K and up? What is the cause >>of all the noise in her classroom? Is it kid noise? Noisy bad >>acoustics type of a room? Is the class out of control or noisy >>behavior wise? The fact that Ruby is asking other kids questions >>about directions lets you know she is having some serious trouble >>hearing in this classroom. An FM or perhaps even a soundfield might >>be something to consider. Sometimes, usually depending on the >>teacher, a soundfield can quiet down a class, but with the wrong >>teacher, the kids just get louder so the soundfield just adds to the >>cacophony. Perhaps an personal FM with low or no gain would benefit >>her. They are used for kids without hearing loss too, kids with >>auditory processing issues etc. Even kids with unilateral and >> " minimal " (16-25 dB) losses have nearly a 50% chance of having to >>repeat a grade, so the cumulative effects of not hearing what is >>going on can be huge. Kids ability to understand speech in noise is >>also very variable. My daughter comprehends nearly 100% in a quiet >>environment but only comprehends 40% in noise. Most of the >>grammatical information in English like tense, plurality and >>possession happen using the very quietest and highest frequency sounds >>like s and t. So if the hearing loss is affecting her ability to hear >>ONLY these letters, it will still affect her quite a bit. And the >>noise in the classroom will drown out these sounds first as well. Do >>you have a good pediatric or school audiologist who could do some >>functional testing of Ruby in and out of noise? in GA >> > >> >> >> >> > >_________________________________________________________________ >Find a local pizza place, music store, museum and more…then map the best >route! http://local.live.com > > > >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 September 21, 2006 Report Share Posted September 21, 2006 , one little twist on the audiogram - 25dB as normal is for adults, for kids the cut off is 15 dB and 16-25 dB is considered " minimal " hearing loss. Re: Introduction: Ruby's father >>Date: Thu, 21 Sep 2006 13:36:06 -0000 >> >>Hi - >> >>Thanks for the reply. I can tell right away that I have to go learn a >>few things and clarify. I have the audiology report in front of me, >>but I have to figure out how to better describe the hearing loss to you. >> >>Here's what I see: >> >>1. Otoacoustic Emissions (OAE) testing shows that the emissions are >>completely absent above 5KHz and present below 4 KHz, with inbetween >>frequencies apparently less clear. Loss is bilateral (not surprising >>since it is from chemo and radiation and not something anatomical or >>give to just one ear). >> >>2. Audiometric test results show normal sensitivity to pure tones up >>to 4KHz and then a steep drop for the rest of the high frequency range >>(tested up to 8KHz). It is on a plot which seems to show the normal >>sensitivity range shaded in gray as being as low as 15 dB below a zero >>line. Where Ruby drops below that shaded area, she goes as low as >>55-60 dB. I obviously need to get a little educated on how to read an >>audiogram! But if I read it right, I guess I can tell you that her >>loss is only above 4KHz as of the test date and it gets " bad " , but >>maybe not what would be called " profound " ? I, obviously, also need to >>learn the lingo a bit and figure out what " profound " means in this >>setting! >> >>Your thoughts on FM and soundfield are very interesting. Her >>kindergarten setting makes it hard for me to see how to get an FM >>system to fit in. They aren't sitting in regular places very much of >>the time. And she doesn't wear hearing aids, so I also don't know how >>she would easily wear a receiver. And I have no idea what a >>soundfield is! So I am off to google it! There is no school >>audiologist, so I am also going to have to look into that. >> >>Thanks again. You have given me much to think about already. >> >>Best, >> >> >> >> >> > >> > Hi - Wow, your Ruby sounds like a true gem and she sounds >>lucky to have the parents that she does. I'm kind of confused by your >>description of her loss. Is the loss profound (100 db+) above 4-5K or >>is the only place there is loss from 4-5K and up? What is the cause >>of all the noise in her classroom? Is it kid noise? Noisy bad >>acoustics type of a room? Is the class out of control or noisy >>behavior wise? The fact that Ruby is asking other kids questions >>about directions lets you know she is having some serious trouble >>hearing in this classroom. An FM or perhaps even a soundfield might >>be something to consider. Sometimes, usually depending on the >>teacher, a soundfield can quiet down a class, but with the wrong >>teacher, the kids just get louder so the soundfield just adds to the >>cacophony. Perhaps an personal FM with low or no gain would benefit >>her. They are used for kids without hearing loss too, kids with >>auditory processing issues etc. Even kids with unilateral and >> " minimal " (16-25 dB) losses have nearly a 50% chance of having to >>repeat a grade, so the cumulative effects of not hearing what is >>going on can be huge. Kids ability to understand speech in noise is >>also very variable. My daughter comprehends nearly 100% in a quiet >>environment but only comprehends 40% in noise. Most of the >>grammatical information in English like tense, plurality and >>possession happen using the very quietest and highest frequency sounds >>like s and t. So if the hearing loss is affecting her ability to hear >>ONLY these letters, it will still affect her quite a bit. And the >>noise in the classroom will drown out these sounds first as well. Do >>you have a good pediatric or school audiologist who could do some >>functional testing of Ruby in and out of noise? in GA >> > >> >> >> >> > >_________________________________________________________________ >Find a local pizza place, music store, museum and more…then map the best >route! http://local.live.com > > > >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 September 21, 2006 Report Share Posted September 21, 2006 , one little twist on the audiogram - 25dB as normal is for adults, for kids the cut off is 15 dB and 16-25 dB is considered " minimal " hearing loss. Re: Introduction: Ruby's father >>Date: Thu, 21 Sep 2006 13:36:06 -0000 >> >>Hi - >> >>Thanks for the reply. I can tell right away that I have to go learn a >>few things and clarify. I have the audiology report in front of me, >>but I have to figure out how to better describe the hearing loss to you. >> >>Here's what I see: >> >>1. Otoacoustic Emissions (OAE) testing shows that the emissions are >>completely absent above 5KHz and present below 4 KHz, with inbetween >>frequencies apparently less clear. Loss is bilateral (not surprising >>since it is from chemo and radiation and not something anatomical or >>give to just one ear). >> >>2. Audiometric test results show normal sensitivity to pure tones up >>to 4KHz and then a steep drop for the rest of the high frequency range >>(tested up to 8KHz). It is on a plot which seems to show the normal >>sensitivity range shaded in gray as being as low as 15 dB below a zero >>line. Where Ruby drops below that shaded area, she goes as low as >>55-60 dB. I obviously need to get a little educated on how to read an >>audiogram! But if I read it right, I guess I can tell you that her >>loss is only above 4KHz as of the test date and it gets " bad " , but >>maybe not what would be called " profound " ? I, obviously, also need to >>learn the lingo a bit and figure out what " profound " means in this >>setting! >> >>Your thoughts on FM and soundfield are very interesting. Her >>kindergarten setting makes it hard for me to see how to get an FM >>system to fit in. They aren't sitting in regular places very much of >>the time. And she doesn't wear hearing aids, so I also don't know how >>she would easily wear a receiver. And I have no idea what a >>soundfield is! So I am off to google it! There is no school >>audiologist, so I am also going to have to look into that. >> >>Thanks again. You have given me much to think about already. >> >>Best, >> >> >> >> >> > >> > Hi - Wow, your Ruby sounds like a true gem and she sounds >>lucky to have the parents that she does. I'm kind of confused by your >>description of her loss. Is the loss profound (100 db+) above 4-5K or >>is the only place there is loss from 4-5K and up? What is the cause >>of all the noise in her classroom? Is it kid noise? Noisy bad >>acoustics type of a room? Is the class out of control or noisy >>behavior wise? The fact that Ruby is asking other kids questions >>about directions lets you know she is having some serious trouble >>hearing in this classroom. An FM or perhaps even a soundfield might >>be something to consider. Sometimes, usually depending on the >>teacher, a soundfield can quiet down a class, but with the wrong >>teacher, the kids just get louder so the soundfield just adds to the >>cacophony. Perhaps an personal FM with low or no gain would benefit >>her. They are used for kids without hearing loss too, kids with >>auditory processing issues etc. Even kids with unilateral and >> " minimal " (16-25 dB) losses have nearly a 50% chance of having to >>repeat a grade, so the cumulative effects of not hearing what is >>going on can be huge. Kids ability to understand speech in noise is >>also very variable. My daughter comprehends nearly 100% in a quiet >>environment but only comprehends 40% in noise. Most of the >>grammatical information in English like tense, plurality and >>possession happen using the very quietest and highest frequency sounds >>like s and t. So if the hearing loss is affecting her ability to hear >>ONLY these letters, it will still affect her quite a bit. And the >>noise in the classroom will drown out these sounds first as well. Do >>you have a good pediatric or school audiologist who could do some >>functional testing of Ruby in and out of noise? in GA >> > >> >> >> >> > >_________________________________________________________________ >Find a local pizza place, music store, museum and more…then map the best >route! http://local.live.com > > > >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 September 21, 2006 Report Share Posted September 21, 2006 Wow, Ruby's treatment history makes Elias's seem simple by comparison. How long ago did she do the tandem transplant? Is she NED at this point? I don't remember any of this from the ACOR list, but I have been having trouble getting all of the posts from that list. Their software doesn't seem to work well with optimum online mail - I think it gets blocked sometimes - so I just switched it to my gmail account a couple of days ago. One thing really leaps out at me : Ruby's neuropsych eval was done before transplant??? Has she been evaluated since? Because transplant can really change things. Especially with the TBI. And if they used carboplatin in the transplant protocol, then her hearing may well have changed as well. Sloan actually doesn't send kids for the neuropsych until TWO years post chemo, which I think is too late (and I have said this several times on the ACOR list). However, I think some amount of time needs to pass between chemo and the evaluations, simply for things to settle down. As you probably have been told, high dose chemo and any kind of head radiation, including TBI, puts a child at high risk for learning disabilities down the road. So you should consider getting some kind of educational evaluation done now, assuming some time has passed since transplant. Now, someone on this list (Jill??) suggested an evaluation at a place that specializes in hearing impaired kids, and in fact, we are probably going to do just that for Elias. But the problem with our neuroblastoma kids is that they are at risk for so much more than just the hearing problems. So you need to make sure that the evaluation will also include areas besides those impacted by hearing loss. And you guys also have the additional puzzle of the mobility impairment. Elias has low muscle tone, and had a lot of trouble walking at first. He fatigues easily, even now 2.5 years post chemo, and his fine motor skills are very impacted by the low tone. So he qualifies for preschool special education services in those areas, because he is so far behind. Elias was lucky in some ways because he came into the special ed system through Early Intervention. He was diagnosed just before he turned 2, and one of his major symptoms was that he stopped walking. Sound familiar,huh? I bet that symptom is true of 75% of the neuroblastoma kids. But it is usually due to mets or paralysis. At Sloan, they did an MRI to look for spinal compression, and of course the MIBG and bone scans. Well, there were no mets to the bones, and no spinal compression. So then Dr Kushner was totally puzzled as to why he wasn't walking, and orderd physical therapy (they were worried that he wouldn't be able to recover from the massive resection surgery since he was losing muscle so fast). The Sloan physical therapist in turn referred him to Early Intervention. We had to schedule all those EI evaluations during chemo!! What a mess! But I am so glad he went into the system, because everything has just flowed along since. He did a full set of evaluations in order to go into preschool special ed at age 3, and Early Intervention paid for his hearing aids and his FM system. Well, good luck on everything. BTW, I know there is at least one other neuroblastoma family who is lurking on this list as well. Bonnie > > Hi Bonnie- > > Thanks for the reply and hello. In answer to your questions: Yes, I > did find this list through you note on the ACOR Neuroblastoma list. > Thanks. I have been reading this one a bit, but have been so busy and > it is all such a new " language " to me, that I haven't been able to > absorb it. But now I think it is time I get going up the learning > curve about this hearing loss stuff! > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.