Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 4/6/2006 7:59:29 A.M. Eastern Daylight Time, bswatson@... writes: That was November, so the pediatrician referred us to an ENT. He was an a**, spent 10 minutes with her and said " she's fine " . HOW SO! Hey there Robin, I'm Jill, mom to two kids who are older than yours, but I certainly remember potty training! (ugh!) I am certain that you belong here. Your child has a hearing loss and so do all of ours. That's the point of the list -- to learn from other parents. Everyone's kids have different circumstances, a different level or kind of loss. Some have other issues, some don't. And that's the beauty of this place, we all share what we know and help each other figure it out or just cope with our daily lives. Even if our kids have completely different circumstances, we deal with similar things. Everything from school services to the family members who insist on giving unwanted advice, to the strangers who stare at the aids in our kids ears. This is the place where we can share all that. I know only one other mother in my community with a D/HOH child, but here there are so many! An online community of support. Our older child is our D/HOH (deaf/hard of hearing) son. He is now 15 and a sophomore in our local high school. Our daughter is 12 and hears just fine, but at this age, she prefers to ignore me much of the time (grin). It's been 8 years for us since we learned about Ian's hearing loss and it was very tough at first! Very confusing to try and figure out what is going on, and to find the right doctors. So, know that you're not alone, many of us have been there! Our Ian is also a child who was falling through the cracks. We learned about his hearing loss when he was 7½ and in 2nd grade. We had an absolutely horrible ENT/audi who booth tested him without averting their faces so they said his loss was 15 dbs, and then said that hearing loss was due to wax in his e ars. So, we cleaned the ears and the " minor " loss didn't go away -- booth tested again the same way with the same results. We were seeing many doctors, and to make a very long story short, thankfully we were referred to our current audi. He realized within a minute of Ian being in the booth that Ian could lip read what was being said outside the booth! So he managed to correctly diagnosed Ian's hearing loss and we've been seeing him ever since. My initial response to your post was 1) of course you belong here and 2) you need to find a new doctor. I don't know the Memphis area at all -- we're close to NYC, but I'm sure there must be a children's hospital in your city. I would contact them and see about getting an appointment for Bree with their audiologists and ENTs and whoever else you feel might help It took a couple years to find all the right doctors because I wanted people we trusted. We have two hospital centers who see Ian because each has their specialty. Columbia because their ENTs specialize in middle ear issues. And Montefiore because they specialize in syndromes like Ian's, which is a rare one. Ian needs both. Our experience is that Ian's ENTs will deal with structural issues -- what is causing his hearing loss and if it could be fixed/repaired. Our audi is the one who manages Ian's hearing care, doing booth testing every 3-6 months to monitor the loss. We have not seen the Columbia ENT in over 3 years because there is no need. Ian's loss has not suddenly increased to the point where surgery is an option and nothing " weird " has happened either. For us it is simply a matter of monitoring the loss as it progresses. Other parents here see their ENTs on a regular basis because it's what's right for their kids. Whichever works out for you, you still need doctors you can trust. Ones who explain things to you so that you understand and take the time to actually evaluate your child. Our Columbia ENT has never spent only 10 minutes with Ian and he has been literally inside Ian's ears so he knows what's in there. None of them spend so little time. One of the things we did that helped was see a geneticist. Our Ian has a lot of little issues that didn't add up to anything, they seemed unrelated to any doctor I asked, including our wonderful pediatrician. I felt there were too many things going on, too many little issues for them not to be related. Our ped. referred us to the geneticist who identified the syndrome. Suddenly we had more of a clue -- Ian's syndrome is a craniofacial one and his issues made sense. We were referred to a craniofacial center in NYC, Montefiore Hospital. That hospital is about 2 hours away. When we go there, Ian is seen by the ENT, audiologist and craniofacial specialist all on the SAME day. Montefiore assigned us a case worker who coordinates that for us so that we don't have to travel that far repeatedly for individual appointments. They even had a dentistry center because kids with this type of syndrome often can't see regular dentists. I would make calls to find a new audiologist and ENT, make sure they are pediatric ones. Many claim to be family practitioners for audiology or ENT but do not deal well with children -- if they're not specifically pediatric then they will often lack the patience and knowledge you need to address your child's issues. Kids are different. As for the PT and OT and speech people not calling you back ... is there an Early Intervention program in Tenn? (Help .... does anyone on the list know who should be called?) You can contact your State Education Department and ask about an early intervention program. Here in NY the children are covered by our EI (early intervention) program until they turn 4 -- I believe as long as the child is still 3 they're in the EI program, and then they are transitioned over to the local school district for services. EI programs can and will provide OT, PT and speech services, as well as TOD (teachers of the deaf) and often there are nursery school programs available for children with speech issues (which are more common than hearing issues). EI provides these service in your local area so you don't have to be worrying about being a county or city resident and figuring out where you belong. I know this is long an rambling, but I hope it helps. You don't have to fall through the cracks and maybe we can help you figure out how to find what you need. Welcome to the group, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 4/6/2006 7:59:29 A.M. Eastern Daylight Time, bswatson@... writes: That was November, so the pediatrician referred us to an ENT. He was an a**, spent 10 minutes with her and said " she's fine " . HOW SO! Hey there Robin, I'm Jill, mom to two kids who are older than yours, but I certainly remember potty training! (ugh!) I am certain that you belong here. Your child has a hearing loss and so do all of ours. That's the point of the list -- to learn from other parents. Everyone's kids have different circumstances, a different level or kind of loss. Some have other issues, some don't. And that's the beauty of this place, we all share what we know and help each other figure it out or just cope with our daily lives. Even if our kids have completely different circumstances, we deal with similar things. Everything from school services to the family members who insist on giving unwanted advice, to the strangers who stare at the aids in our kids ears. This is the place where we can share all that. I know only one other mother in my community with a D/HOH child, but here there are so many! An online community of support. Our older child is our D/HOH (deaf/hard of hearing) son. He is now 15 and a sophomore in our local high school. Our daughter is 12 and hears just fine, but at this age, she prefers to ignore me much of the time (grin). It's been 8 years for us since we learned about Ian's hearing loss and it was very tough at first! Very confusing to try and figure out what is going on, and to find the right doctors. So, know that you're not alone, many of us have been there! Our Ian is also a child who was falling through the cracks. We learned about his hearing loss when he was 7½ and in 2nd grade. We had an absolutely horrible ENT/audi who booth tested him without averting their faces so they said his loss was 15 dbs, and then said that hearing loss was due to wax in his e ars. So, we cleaned the ears and the " minor " loss didn't go away -- booth tested again the same way with the same results. We were seeing many doctors, and to make a very long story short, thankfully we were referred to our current audi. He realized within a minute of Ian being in the booth that Ian could lip read what was being said outside the booth! So he managed to correctly diagnosed Ian's hearing loss and we've been seeing him ever since. My initial response to your post was 1) of course you belong here and 2) you need to find a new doctor. I don't know the Memphis area at all -- we're close to NYC, but I'm sure there must be a children's hospital in your city. I would contact them and see about getting an appointment for Bree with their audiologists and ENTs and whoever else you feel might help It took a couple years to find all the right doctors because I wanted people we trusted. We have two hospital centers who see Ian because each has their specialty. Columbia because their ENTs specialize in middle ear issues. And Montefiore because they specialize in syndromes like Ian's, which is a rare one. Ian needs both. Our experience is that Ian's ENTs will deal with structural issues -- what is causing his hearing loss and if it could be fixed/repaired. Our audi is the one who manages Ian's hearing care, doing booth testing every 3-6 months to monitor the loss. We have not seen the Columbia ENT in over 3 years because there is no need. Ian's loss has not suddenly increased to the point where surgery is an option and nothing " weird " has happened either. For us it is simply a matter of monitoring the loss as it progresses. Other parents here see their ENTs on a regular basis because it's what's right for their kids. Whichever works out for you, you still need doctors you can trust. Ones who explain things to you so that you understand and take the time to actually evaluate your child. Our Columbia ENT has never spent only 10 minutes with Ian and he has been literally inside Ian's ears so he knows what's in there. None of them spend so little time. One of the things we did that helped was see a geneticist. Our Ian has a lot of little issues that didn't add up to anything, they seemed unrelated to any doctor I asked, including our wonderful pediatrician. I felt there were too many things going on, too many little issues for them not to be related. Our ped. referred us to the geneticist who identified the syndrome. Suddenly we had more of a clue -- Ian's syndrome is a craniofacial one and his issues made sense. We were referred to a craniofacial center in NYC, Montefiore Hospital. That hospital is about 2 hours away. When we go there, Ian is seen by the ENT, audiologist and craniofacial specialist all on the SAME day. Montefiore assigned us a case worker who coordinates that for us so that we don't have to travel that far repeatedly for individual appointments. They even had a dentistry center because kids with this type of syndrome often can't see regular dentists. I would make calls to find a new audiologist and ENT, make sure they are pediatric ones. Many claim to be family practitioners for audiology or ENT but do not deal well with children -- if they're not specifically pediatric then they will often lack the patience and knowledge you need to address your child's issues. Kids are different. As for the PT and OT and speech people not calling you back ... is there an Early Intervention program in Tenn? (Help .... does anyone on the list know who should be called?) You can contact your State Education Department and ask about an early intervention program. Here in NY the children are covered by our EI (early intervention) program until they turn 4 -- I believe as long as the child is still 3 they're in the EI program, and then they are transitioned over to the local school district for services. EI programs can and will provide OT, PT and speech services, as well as TOD (teachers of the deaf) and often there are nursery school programs available for children with speech issues (which are more common than hearing issues). EI provides these service in your local area so you don't have to be worrying about being a county or city resident and figuring out where you belong. I know this is long an rambling, but I hope it helps. You don't have to fall through the cracks and maybe we can help you figure out how to find what you need. Welcome to the group, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 4/6/2006 7:59:29 A.M. Eastern Daylight Time, bswatson@... writes: That was November, so the pediatrician referred us to an ENT. He was an a**, spent 10 minutes with her and said " she's fine " . HOW SO! Hey there Robin, I'm Jill, mom to two kids who are older than yours, but I certainly remember potty training! (ugh!) I am certain that you belong here. Your child has a hearing loss and so do all of ours. That's the point of the list -- to learn from other parents. Everyone's kids have different circumstances, a different level or kind of loss. Some have other issues, some don't. And that's the beauty of this place, we all share what we know and help each other figure it out or just cope with our daily lives. Even if our kids have completely different circumstances, we deal with similar things. Everything from school services to the family members who insist on giving unwanted advice, to the strangers who stare at the aids in our kids ears. This is the place where we can share all that. I know only one other mother in my community with a D/HOH child, but here there are so many! An online community of support. Our older child is our D/HOH (deaf/hard of hearing) son. He is now 15 and a sophomore in our local high school. Our daughter is 12 and hears just fine, but at this age, she prefers to ignore me much of the time (grin). It's been 8 years for us since we learned about Ian's hearing loss and it was very tough at first! Very confusing to try and figure out what is going on, and to find the right doctors. So, know that you're not alone, many of us have been there! Our Ian is also a child who was falling through the cracks. We learned about his hearing loss when he was 7½ and in 2nd grade. We had an absolutely horrible ENT/audi who booth tested him without averting their faces so they said his loss was 15 dbs, and then said that hearing loss was due to wax in his e ars. So, we cleaned the ears and the " minor " loss didn't go away -- booth tested again the same way with the same results. We were seeing many doctors, and to make a very long story short, thankfully we were referred to our current audi. He realized within a minute of Ian being in the booth that Ian could lip read what was being said outside the booth! So he managed to correctly diagnosed Ian's hearing loss and we've been seeing him ever since. My initial response to your post was 1) of course you belong here and 2) you need to find a new doctor. I don't know the Memphis area at all -- we're close to NYC, but I'm sure there must be a children's hospital in your city. I would contact them and see about getting an appointment for Bree with their audiologists and ENTs and whoever else you feel might help It took a couple years to find all the right doctors because I wanted people we trusted. We have two hospital centers who see Ian because each has their specialty. Columbia because their ENTs specialize in middle ear issues. And Montefiore because they specialize in syndromes like Ian's, which is a rare one. Ian needs both. Our experience is that Ian's ENTs will deal with structural issues -- what is causing his hearing loss and if it could be fixed/repaired. Our audi is the one who manages Ian's hearing care, doing booth testing every 3-6 months to monitor the loss. We have not seen the Columbia ENT in over 3 years because there is no need. Ian's loss has not suddenly increased to the point where surgery is an option and nothing " weird " has happened either. For us it is simply a matter of monitoring the loss as it progresses. Other parents here see their ENTs on a regular basis because it's what's right for their kids. Whichever works out for you, you still need doctors you can trust. Ones who explain things to you so that you understand and take the time to actually evaluate your child. Our Columbia ENT has never spent only 10 minutes with Ian and he has been literally inside Ian's ears so he knows what's in there. None of them spend so little time. One of the things we did that helped was see a geneticist. Our Ian has a lot of little issues that didn't add up to anything, they seemed unrelated to any doctor I asked, including our wonderful pediatrician. I felt there were too many things going on, too many little issues for them not to be related. Our ped. referred us to the geneticist who identified the syndrome. Suddenly we had more of a clue -- Ian's syndrome is a craniofacial one and his issues made sense. We were referred to a craniofacial center in NYC, Montefiore Hospital. That hospital is about 2 hours away. When we go there, Ian is seen by the ENT, audiologist and craniofacial specialist all on the SAME day. Montefiore assigned us a case worker who coordinates that for us so that we don't have to travel that far repeatedly for individual appointments. They even had a dentistry center because kids with this type of syndrome often can't see regular dentists. I would make calls to find a new audiologist and ENT, make sure they are pediatric ones. Many claim to be family practitioners for audiology or ENT but do not deal well with children -- if they're not specifically pediatric then they will often lack the patience and knowledge you need to address your child's issues. Kids are different. As for the PT and OT and speech people not calling you back ... is there an Early Intervention program in Tenn? (Help .... does anyone on the list know who should be called?) You can contact your State Education Department and ask about an early intervention program. Here in NY the children are covered by our EI (early intervention) program until they turn 4 -- I believe as long as the child is still 3 they're in the EI program, and then they are transitioned over to the local school district for services. EI programs can and will provide OT, PT and speech services, as well as TOD (teachers of the deaf) and often there are nursery school programs available for children with speech issues (which are more common than hearing issues). EI provides these service in your local area so you don't have to be worrying about being a county or city resident and figuring out where you belong. I know this is long an rambling, but I hope it helps. You don't have to fall through the cracks and maybe we can help you figure out how to find what you need. Welcome to the group, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 4/6/2006 8:35:06 A.M. Eastern Daylight Time, bswatson@... writes: With having state insurance it's not easy to find places that will take it. We've found that the large children's hospitals have been very good about accepting all kinds of insurance. Especially the specialized ones like Montefiore. If they didn't accept a broad range of insurance, they would never see the kids with these issues because most parents can't afford to just take their kids anyplace and pay for it. It's hard to specialize in things without children to be the patients. I'd make some calls to the larger institutions, you might be pleasantly surprised. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 4/6/2006 8:35:06 A.M. Eastern Daylight Time, bswatson@... writes: With having state insurance it's not easy to find places that will take it. We've found that the large children's hospitals have been very good about accepting all kinds of insurance. Especially the specialized ones like Montefiore. If they didn't accept a broad range of insurance, they would never see the kids with these issues because most parents can't afford to just take their kids anyplace and pay for it. It's hard to specialize in things without children to be the patients. I'd make some calls to the larger institutions, you might be pleasantly surprised. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Robin Welcome to the group. It's my hope that you will find support here and possibly referals to places in TN that CAN help you. I am certainly no expert in the things you describe, but other moms/dads on the list are. Some kids with hearing loss have additional things going on, so I think you will get responses to this situation here. Since Breanna has all these situations going on, I am wondering if she has been evaluated for autism? Or does the SID cause the toe walking and the hearing problem, although the flat tympanogram would be confusing. Have you considered an audiobrainstem response (ABR) or BAER which would test her hearing while under sedation? best to you, mary > Thank you for allowing me to join your group. I'm not sure if we/I > belong here or not yet, but this is our situation. I really don't know > where we belong. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hi Robin, I know how frustrating it can be when you perceive that things are not just right with your child and no one is helping. I do have some experience with a couple of the issues that you brought up. Regarding walking on the toes. Some kids just do this. My bestfriend has two boys. Both of them walked on the toes. The oldest quit on his own at about age 5 as he became interested and active in sports. The youngest continued and it did indeed start to cause potential problems at about age 6. So they offered him physical therapy to correct it, with a brace. If he was not able to correct it, then the answer was surgery. After 3 months, he successfully broke the habit, and now walks normal. Note that age 6 is a much more cooperative age than is 3. Also, regarding flat tympanogram and hearing loss of 20-40db. I am going through that right now with my youngest son. He is in exactly the same position, except that our ENT says there is fluid that has been there for a while and wants to do surgery to put in tubes and remove his tonsils and adnoids. I am requiring that a sleep study be done before considering the surgery. Also, my HOH son's ENT told me that it can take up to 90 days for fluid to resolve, so I want to wait and see if the fluid goes away before getting tubes, as we like to swim in the summer. So sometimes a wait and see approach can be benefitial. However...nothing replaces your intuition and if you continue to believe that there is something not just right, then keep searching for a doctor that you can place your trust in. Best Wishes, Tracey > > Thank you for allowing me to join your group. I'm not sure if we/I > belong here or not yet, but this is our situation. I really don't know > where we belong. > > My name is Robin, we live in the suburbs of Memphis and have 3 girls > (Constance- 6, Breanna-3, is almost 2). > > Breanna is my " different " child, she's not horrible or bad or anything > she's just DIFFERENT. I know children are not made from cookie cutters > so siblings are going to be different but Bree is my most difficult > child (at this point). Bree showed signs of SID (sensory integration > dysfunction) but wasn't ENOUGH to get help, she did get evaluated by > TEIS and was said to be not delayed enough. We went farther and had her > evaluated by Occupational Therapy and thru their tests at 29months she > scored 25mo on visual motor integration, 28 on grasping, and 26mo on > object manipulation. Bree also walks on her toes, getting more and more > frequently. OT suggested getting her hearing and vision tested so we > have a baseline. We did both- vision is fine, and after 2 appointments > at Methodist hospital Audiology that lasted over 1 and half hours each > they said her hearing is at 40-20dB, and she has flat tympaograms. That > was November, so the pediatrician referred us to an ENT. He was an a**, > spent 10 minutes with her and said " she's fine " . HOW SO! > > She is occasionally still going to PT for her toe walking as her heel > cords are getting tight, but that's another unexplained issue and it > seems like they just don't know what to do. They were going to put in > shoe inserts, that hasn't happened yet and the peds sorta pooh- pooh'd > that, but wants her to continue with PT as much as possible and push for > something can cause back and knee problems later in life. I've left 2 > messages in the last 2 weeks and no one has called me back for PT. > > Bree just had her 3yro well child check up, she is 50% for weight and > height (up from used to always being 25%), over all she's healthy and > doing great. But we want to peruse the hearing and toe walking. The > pediatrician gave us to a referral to a hearing and speech place- can't > go there because we are county not city residents! > > I feel like we don't belong anywhere, she's not delayed enough to get > help and we are falling thru the cracks. Other info: she is still not > potty trained (we are working on it) and she does not pedal a trike, she > does not like being up in the air thrown around (in a playful way). > > Another issue I have is my almost 2 year old only says 10 words and > that's not complete words just some are sounds that we know what she > means. > > Thanks for any help you can give me. > -Robin > Memphis TN > Mommy to Constance 6, Breanna 3 and is almost 2 > > > Quote Link to comment Share on other sites More sharing options...
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