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AudioMom

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Posts: 8
Reply with quote  #1 
First, I want to say thanks, to the moderators.  This site has been a big help and comfort in my search for answers.

My dd has been complaining of sound hurting her ears since she was 5y/o (although it has gotten better) & tinnitus since last year.  She is currently 8y/o.  She is very distractible in class, to the point that it is affecting her ability to do her classwork.  She says she is unable to focus b/c of the loud noise and ringing in her ears, the loud noise affecting her the most.  She also has mild sensory and visual processing issues.

So, Monday I took for an audiogram(normal) & LDL test.  The doctor also did a Tympanogram & Acoustic Reflex(which I assume are normal).  Here are the results:

Right Ear                       Left Ear
1000Hz=84dB                 1000Hz=82dB
2000Hz=86dB                 2000Hz=86dB
4000Hz=84dB                 4000Hz=80dB
8000Hz=84dB                 8000Hz=86dB

He says she has hearing sensitivity and not Hyperacusis.  His recommendation was 2hrs/day of music(classical, jazz, etc.) slightly above her comfort level.  Didn't say for how long we should do this.   He suggested a CAPD evaluation (which I was going to do anyway) but didn't offer any explanation as to why and never addressed the tinnitus.  

Isn't hyperacusis LDL levels of <90dBs?  Should I get her hearing protection (for the classroom only) and if so what do you recommend?  Buy a pink noise CD?   Need temporary solutions for the classroom until I can get a second opinion and possibly therapy.  Any advise would be appreciated.

Thanks











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phacker

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Posts: 143
Reply with quote  #2 
Hi Audio Mom,

A person with hyperacusis perceives all sounds to be louder than their normal base and they are often more sensitive to HF as noted in your daughters LDS's.  Most likely your daughter is not going to have a reference point of what her normal sound level is. Your daughter could very well have hyperacusis.  Someone with LDL's of 85 db and louder is considered to have normal hearing.

You need to be careful about using hearing protection for long term in a normal hearing environment as the brain can adjust and turn up the volume to hear the information that is being blocked out.

Have you considered having your daughter sit in the back of the class room and her left ear away from the sound sourse as the sound from the teacher will be at a less volume and with LDL's at 80 plus she may find this acceptable? 

Your daughter should not start a sound treatment with music two hours a day at levels above her LDL as it could back fire and make her more sensitive to sound.  

If you are going to start sound treatment, you need to find a qualified TRT audiologist who has experience with children.  The most expensive part of TRT is the cost of ear level noise generators.  There are noise generators that have dual function as a hearing aid and noise generator. Your insurance company will most likely not pay for the TRT or the noise generators, but they will most likely pay for the hearing aids for children.  Your daughter would not use the hearing aid function of the noise generator.  Often before a TRT audiologist will start TRT they will require a ENT to check the ear to make sure there is not a medical problem causing the issue.

PH
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AudioMom

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Posts: 8
Reply with quote  #3 
Hi phacker,

Thanks for your reply.  

She's been moved around the room various times but it doesn't do any good.

Just started looking for an audiologist and otologist/ent.


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phacker

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Posts: 143
Reply with quote  #4 
Hi Audio Mom,

There was another mother with the user name Jreen with a 13 year old daughter with H and no T from birth that posted on 5/13/14 that was going down the same path that you are now under taking. She had done a lot of research about children with H and was going to have her daughter start up a TRT program. You may want to send her a private email and she may be able to provide you information that will help. 

Just in case you missed it there is a section on the home page H network about children with H.

PH 
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Cheryl_K

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Posts: 101
Reply with quote  #5 
Hi AudioMom,

Just a side note to the hyperacusis and tinnitus issues--You mentioned that your daughter has mild sensory and visual processing issues. There can be more than several causes, and the conditions might all be related, visual, auditory, and "sensory," by which I am assuming other senses and/or vestibular issues. Sometimes they need to all be addressed and healed together. I'm not talking about where children sit in a classroom, or if they are excused from certain activities. There are excellent therapies, some provided by schools, some privately. Depending on location and your health insurance, sometimes private evaluations and therapies are covered.

I'm not sure how your daughter was diagnosed, or how detailed the reports are. If you have not done so as yet, it might be helpful to obtain an evaluation by a pediatric occupational therapist who specializes in vestibular and sensori-motor issues. 

I hope you find the paths to healing that are just right for your daughter.

Best,
Cheryl



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AudioMom

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Posts: 8
Reply with quote  #6 
Hi Cheryl K,

I was thinking the same thing.  Took her to OT for evaluation.  Waiting on the results, but the OT said she definitely has sensory issue.  DD also says she has ringing in her ears, just started last school year. 

In the meanwhile, I have to find something to put in her ears so she can concentrate in class.  Any ideas?
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Cheryl_K

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Posts: 101
Reply with quote  #7 
Hi Audiomom,

I wish I were the one wise person in the world who might be able to answer your question.

I can only tell you my experience--some days are better than others, and if there is a sudden noise, or an accumulation of whatever sounds are causing the ear pain, then a general avoidance might be helpful until you have all this figured out. Most of the time when I have a set back, I have used ear protection. My two really major setbacks were without protection.

Hyperacusis is sometimes used as a general catch-all category which has been divided into different types of selective sound sensitivities. In your daughter's case, there may be factors other than decibel levels which are contributing factors to selective sound sensitivities.

If you block out sound in school, how is your daughter going to hear instruction and directions? How is she going to interact with other children?

I don't know where you live, so I do not know what services are available to you. In the U.S., we can have our children classified for special education or "Section 504" which is provision of special accommodations for children with special needs, without actually classifying them. A full child study team work-up, which would include learning assessment, psychological eval., speech and language eval, and any further medical workup needed, such as a neurological eval, at no cost to the family, would be helpful, if not already done. Perhaps there was an inner ear injury or infection--there are X-rays to assess bone structure in inner ear.

In the meantime, if your daughter seems to be getting worse (more pain, observed behavioral and/or emotional reactions to her pain, etc.), I would request either allowing her to work, on a temporary 504 basis, in the quietest resource room in the school, or if this is not workable or comfortable for her condition, then request homeschooling with teacher home visits until you can find out what you need to know. If your daughter is taking a bus to school, and if you can, take her off the bus and drive her.

I have a few certifications and licenses. I'm certified and highly experienced in school psychology, and sat on the board for a private school for children with special needs. I also left the school system, which can sometimes have limited funds and sometimes limited intentions, and worked from outside the system as a child advocate.

If your dd's school has a long waiting list for evaluations, which, in my opinion, with my personal experiences with H is more than a week, I would write a letter to the principal requesting an evaluation needs to be done ASAP, as there is danger of further damage with H, and there might be complex medical issues involved. There are major teaching hospitals that have child development centers. The can take you sooner, and they generally do a better job. Find out which hospital centers are authorized by the state to perform advocacy services when indicated. They will have an expanded team, drawing on doctors within the hospital, or recommendations if they have no-one on staff.

A "perk" for your school district approving a hospital-based child study center would be that your insurance could or might cover much of it, and they would only have to pay for the evals. that are not covered by medical insurance.

I am certified to practice only in NJ. If you need an advocate to get the ball rolling (wait and see what the response is from the school), it's OK if you ask me to help find one. My email is on this website.

Each state is a little different, especially in regard to chain of command and advocacy issues. I'm not saying I can get you an answer for help in your state, but I know how to ask around.

I was once tough advocate, before my H became to disabling. I once got a principal fired, and in another district, caused the special services department to be monitored by the state. You can use this letter to guide you in writing your request. If you would like me to, I can look over your letter to make suggestions.

Best,
Cheryl






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AudioMom

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Posts: 8
Reply with quote  #8 
Hi Cheryl, 

Thanks for your encouragement and offer of help.  


My daughter goes to private school so those options aren't available to us.  But the school has been extremely patient and helpful.  So, I'm grateful for that.  Looking to see if our insurance will cover some of the expenses.

The hard part is finding knowledgeable professionals and then knowing if your getting a thorough evaluation.

Is your H getting any better?  How severe is it?


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Cheryl_K

Registered:
Posts: 101
Reply with quote  #9 
Hi AudioMom,

I posted something in reply, which I edited and then deleted. My hyperacusis is slowly getting better. Everything else in my response was just a long elaboration which I would like to change in its entirety.

If you want to read some of my history, you can click on my screen name and then click on see all posts.

One of the reasons I am going to stop writing about my symptoms and healing is that for now I have to focus on re-arranging my life. I need to remove my focus from my condition as much as possible, going forward.

I had some thoughts about your daughter, though. Most people believe that hyperacusis is chronic and debilitating. TRT training has reported that a significant amount of people improve. That does not mean all. But it does happen that a good number of people can escape that evil decree of chronic and debilitating. That is something I am focusing on for myself now.

However, I do believe, based on my experiences both with my own children, and working with children with disabilities all my life, that your daughter might have a type of H that is related to a general sensori-motor, vestibular imbalance or injury (including disease or reaction to medication, especially those that cross the blood-brain barrier). In these cases, H is not necessarily debilitating if it is taken care of as part of an overall psycho-educational program.

I am not going to give you any examples, as I would be potentially violating the confidentiality of the children I have worked with, and I would have to get permission. I also have to avoid the appearance of providing you with any kind of diagnosis and therapy, so this is meant as educational, knowing that you are following up with professional evaluations.

All children I knew, whether personally or professionally, who had sensori-motor issues, went through one or all of the following modalities: academic training, occupational therapy, cognitive-behavioral therapy, biofeedback, neurofeedback, and visual training for convergence issues.  Other symptoms, such as sensitivities to sound and light, hyperactivity, sleep disorders, social skills, inability to tolerate anything but lukewarm bathwater and swimming water, chronic bedwetting, behavior problems, tics, and more, were either reduced or entirely eliminated as the other therapies progressed, sometimes without directly focusing on them. As the system healed, (or some would argue for maturational effects), many of the secondary symptoms healed.  I had been involved in this work from 1985 to 2006, when I had to stop working due to my own hyperacusis.

In other words, your daughter's hyperacusis may be secondary to a more generalized sensori-motor syndrome, which might respond to therapy as the system heals. Or it may be due to other factors, such as the general hyperacusis we refer to in this forum, or even a history of chronic ear infections during the first five years of life, sometimes with very high fevers.  I have witnessed, over a period of 20 years, very severely disabled children recover with the above therapies, as well as a small number of sound therapies whether or not hyperacusis was a secondary symptom. What I also learned, when following my patients longitudinally, was that when it comes to therapies, one size does not fit all. There are audiologists who are trained in and offer a wide variety of techniques, and can switch modalities when needed.

I still don't know where you live, so I don't know how to advise you concerning involvement of public funds. If you live in the U.S., your child is entitled to a full child study team work up at school district expense, eventually state expense, through the magic of "flow through funds" even if enrolled in private school or home schooled. It's also easier to get the more "delux" hospital-based evaluation going this route.

Again, good luck.
Cheryl
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AudioMom

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Posts: 8
Reply with quote  #10 
Hi Cheryl, 

The OT report came back with sensory integration issues.  OT said some kids with sensory issues also have hearing sensitivity.  

So it looks like I may go the OT route first.  Don't know yet. Still want to get a thorough audio/CAPD exam.  

Wow, this is so overwhelming and complicated.
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