Very Frustrated Mom!

I have a daughter that will be 5 in April. She has had a bagillion ear infections, among other things, since she was born and I’m about ready to beat the next ENT/Audiologist/School IEP person with a baseball bat if they tell me nothing is wrong…She’ll grow out of it…She has ADD/HD…! I know that there is somewhat of a novel to follow, but I promise you this is an abridged version!

3/09 - tubes placed, OME present in both ears, and adenoid (4+) removed. Never had a pre-op hearing test done, nor an ABR while she was under, first mistake!

5/09 - Tymp is flat lined (normal) with a high ECV (normal). Audiogram is partial at best and the OAE didn’t work right (total user error). This was a disastrous session as the idiot clipped the alligator clips to my daughters skin and then proceeded to get mad at her because she kept crying. I still get very upset thinking about it!

  •      Sound field warble tone done only on the right ear.
    

500 = 25
1k = 20
2k = 15
4k = 20

10/09 - we had an OAE done, I don’t really know how to read it. There are two frequencies, but I’m using the second as it’s whole numbers and the dB’s for each ear is the DP-NF. This is what I could interpret;
Right Left
3k 24 24
4k 19 21
5k 16 14

 Early 1/11 – New ENT because of move.   Audiology evaluation done.  Things don't match the way that they should.  Diagnosis of mild (on the verge of moderate at some frequencies) bi-lateral conductive hearing loss.  
  • Rt ear has type B, flat tymp with normal ECV and absent ipsi reflexes. Why is the ECV normal? Shouldn’t it be high, like 3.0 or more.
  • Lt. ear has type C, with the bump on the left, indicating negative pressure and good compliance (I don’t know what that means), but it has a reflex present at 1000hz but not at 2000hz. Why is there a reflex present?
  • She responds to voice at 15dB AS and 10dB AD. Really, we don’t talk at that level, it’s 35dB and why didn’t they test at that level?
  • Pure Tone results
    Right Left
    250 25 40
    500 25 30
    1k 10 20
    2k 10 20
    4k 30 20

Late 1/11 - 2nd set of tubes, OME present in both ears, and tonsils (kissing tonsils, 5+) removed.

12/11 - Hearing test done to appease me (ENT is starting to not like me).

  • No air conduction done, No tymp done
  • Pure Tone results
    Right Left
    250 25 30
    500 25 25
    1k 15 15
    2k 7 12
    4k 20 20
    I was told that everything was fine. And her mild hearing loss is due to the weight of the PE tubes.

If I knew what I know now four years ago, I think things would be different. Heck, I even have a deaf cousin that I’m really close to (she’s been helping me as much as she can) and I still can’t seem to ask the right questions, get the right tests, or help the issue. My daughter is developmently delayed in speech and motor skills, making her academic learning iffy. We had an IEP done as our insurance will not pay for therapy. Insurance says she never “lost” her hearing, as she never had it, so they can’t prove she’ll ever get it, therefore they won’t cover any of it. The IEP was awful and incomplete. Even though they all admit she has a hearing problem, all of her issues stem from ADD and she needs to be pulled from her current education program and be placed in a Special Ed segregated classroom. WTF! Where did ADD come from? Spec. Ed. classroom? She’s inattentive because she can’t HEAR YOU! (Bang head now! And again, and again, and again!) She hears randomly; If you give her a three step order, she’ll do the first and last, because she didn’t hear the middle step. If she does all three, she can’t remember what you told her to do, she just does it. There are moments when she is there and then gone. Usually under a minute, but she is clearly gone, can’t hear you, couldn’t hear a train if she wanted to! She over compensates visually. She can “read” a room of people in 5 secs. flat, but engage in a conversation, nope not happening!

Anyways, I’m not waiting for an IEE, because I could be a grandma by then and I have set up my own IEE. We have seen the pediatric ENT at Rady’s Children Hospital, and we will be doing our full audio evaluation on Tuesday. With those results we will see if we need a BAER, MRI, or other tests. I need to know the following;
- What tests should I make sure are completed on Tuesday?
- What are some important questions to ask? I have a list, but I want to make sure I don’t miss a good one.
- If the hearing loss is the same or worse, I need to force the issue of HA’s correct? I mean it’s obvious that she has perment conductive hearing loss, if not something else (talks of audio neropothy have happened more than once)

Am I missing anything?

Thank you so much!

First let me say that I’m sorry you feel like you have been given the run around.

Let me try to answer some of your questions before getting to the end part.

  1. Rt ear has type B, flat tymp with normal ECV and absent ipsi reflexes. Why is the ECV normal? Shouldn’t it be high, like 3.0 or more.
  2. Lt. ear has type C, with the bump on the left, indicating negative pressure and good compliance (I don’t know what that means), but it has a reflex present at 1000hz but not at 2000hz. Why is there a reflex present?
  3. She responds to voice at 15dB AS and 10dB AD. Really, we don’t talk at that level, it’s 35dB and why didn’t they test at that level?
  • Pure Tone results
    Right Left
    250 25 40
    500 25 30
    1k 10 20
    2k 10 20
    4k 30 20
  1. The ECV is normal because the tube has fallen out and the hole in the tympanic membrane ™ has healed. The fact that it’s flat indicates that the middle ear space is filled with fluid. There is no reflex because of the middle ear fluid - there is no TM movement. The reflex is measured by measuring the movement of the TM so if it can’t move, we can’t measure a reflex.
  2. Normal compliance means that the TM is moving normally. The negative pressure indicates that the eustachian tube (ET) isn’t opening/closing like it should and the air pressure in the middle ear space is less than that in the ear canal and it’s pressing inward on the TM/the TM is pulling back into the middle ear space. The fact that there was a reflex at 2000Hz probably just indicates that the reflex was strong enough to elicit movement of the TM that the equipment could measure, but due to the abnormal function of the TM (it’s retraction) they couldn’t get a measurement at 1000Hz.
  3. When we asses hearing levels we are looking for the softest level the person can hear. If your daughter can hear speech at 10 and 15dB then she will obviously be able to hear you at normal speaking volumes, which is actually around 45-55dB.

The pure tone testing is consistent with the presence of fluid /abnormal middle ear function which normally affects the lower frequencies more than the higher frequencies.

12/11 - Hearing test done to appease me (ENT is starting to not like me).

  • No air conduction done, No tymp done
  • Pure Tone results
    Right Left
    250 25 30
    500 25 25
    1k 15 15
    2k 7 12
    4k 20 20
    I was told that everything was fine. And her mild hearing loss is due to the weight of the PE tubes.

If they got pure tone results like you list above, those are typically air conduction scores…did you mean they didn’t obtain bone conduction scores??? I think you may have mis-typed the 2K amounts, testing is done in 5 db increments…regardless the answer that the results are consistent w/tubes is absolutely correct. Kids with tubes usually have lower responses in lower frequencies due to the tube presence. Technically her hearing is totally normal since normal is anything -10 to 25dB…but for a small child we expect results to be around 0-15 (depending on age and attention level during testing) if everything is working correctly in there.

it is possible, that her difficulties with speech has nothing to do with her hearing OR ADD/ADHD. My first suggestion is to get a thoroughan audiological eval as possible. Air conduction, bone conduction, speech testing, tymps, OAE’s. If all of that looks normal, then start looking elsewhere for the problem. Some kiddos (and adults for that matter) have something called Central Auditory Processing Disorder (CAPD). Now it’s also possible she’s just not paying attention but if the hearing and middle ear function are normal, then I’d suggest getting worked up for CAPD. Whoever does the evaluation might also do other behavioral and psychological testing to get a complete picture of what is going on as well…

Given the results that you’ve posted, she doesn’t appear to have permanent conductive hearing loss…she has fluctuations consistent with a kid with chronic middle ear pathology. There’s no way to know, for sure, what kind of hearing loss she has until someone does some bone conduction testing. If her hearing is the same, I don’t think hearing aids are the way to go…until you get more information. She should be plenty old enough to get a near-complete if not complete audiological test done, especially if you are doing it at a children’s hospital or office that specializes in pediatrics. The audiologists there will have see A LOT of kiddos and what they tell you is going on, should be very accurate…

It is possible that she could have auditory neuropathy and if that is suspected or you want it ruled out, tell them you want her to be tested for it. Honestly, your mind won’t be at rest until you have a yes/no answer about it so I’d push for that before pushing for hearing aids. That usually involves an ABR (BAER) which she may or may not need to be sedated for.

Hope that helps!

DocAudio, Thank you so much for your reply and reading everything. You have answered my questions and have helped me understand the sea of papers I have setting in front of me. I was all freaked out on her Tymp. because of the odd readout. I know it’s 100% possible that she had fluid at the time of the test, she always has some form of fluid in her ear, we’ve gotten used to it. We only treat it when it gets “stinky”. I was not aware that her tube had fallen out. No one mentioned it to me during the testing or after her second set of tubes were placed. I actually have the “tubes” taped in her baby book.

Yes, I meant bone conduction, she had it on the previous test, but not this one. The 2K isn’t a mis-type. It’s the only one that is in the “normal” range and that is only after her second set of tubes, although I think it fluctuates day to day, hour by hour, due to the fluid.

My son and I have ADD/HD and I can bet my life that my daughter does not have it. I know that it is somewhat of a spectrum disorder, but she is not. Our ST and I have talked about CAPD and we both believe that it is either that or auditory neuropathy or a combination of both. She was Jaundice at birth, she had head trauma at 7 months, countless ear infections, and Ototoxic meds more than once. I know that CAPD testing needs to be administered under well-controlled acoustic conditions and that has not been done in any of her tests. The IEP testing that was done was far from a well-controlled environment. Phones, text messages, fax machine, people walking all around the office, kids coming in and out of the room, screaming kids outside, ect. No wonder they think she has ADD. It was hard enough for me to stay focused and I’m medicated! I was also told by the DHH specialist at the IEP meeting that I should not do an ABR since my daughter is old enough to do conditioned play. An abnormal ABR and normal OAE is the only way to check for a auditory neuropathy, right?

My daughter is smart and relies a lot on reading everything around her. When someone says “stop, listen, wait for it…, listen” then says a sound that they want her to hear. She’s gonna hear it, especially when they are looking at her. It’s the same when she tells me she can “hear” the leaves or water running, cuz she can see the trees moving, or she can see the water running. BUT, she does zone out, or seem like she isn’t there. She isn’t ignoring you, she clearly doesn’t hear you. It can be in a loud or quite environment, but it happens more when she isn’t feeling well, tired, or over stimulated.

Thanks again, I will defiantly make sure that all of those tests are done on Tuesday or in a follow up. Tuesday will be the deciding factor of an ABR, I know if I push for it, they’ll do the test, but I do want to see the results of everything else first.

Do a search on Auditory Processing Disorder.

Had it when I was a kid even before the name was coined. Countless earaches is what I remember of my childhood. In those days, they treated earaches with a little blue bottle of eucalyptus oil and a cotton swab to hold it in … totally ineffectively I may add. :rolleyes:

Zoning out is the best way to describe it. It still affects me today under the conditions you describe. It also happens quite frequently in places that have lots of voices like busy restaurants.

It is like sensory overload and one has the ability to just switch your hearing off without realizing it. On the other hand I can really concentrate and focus on something without being distracted by sound.

Learning to turn a percieved disadvantage to a quality wasn’t easy but extremely rewarding.

I do believe she has APD. The more I read about it the more I’m convinced. I just noticed her do it today at a play date with friends. She was staring right at me, friends talking loudly, me trying to get her attention, and she was just not there. As quickly as she left, she was back. It really is a sensory overload, it’s like the brain shorts for a minute, to re-set, and then comes back on.

I do have to give her credit, she can fall asleep anywhere, including a rock concert. It’s almost like she falls asleep and stays asleep better with noise.

What sucks, is since she is so young it’s hard to talk to her about what she is feeling/hearing/not hearing. It also doesn’t happen on a consistent basis, yet. Meaning, it could happen the second the room gets noisy or 30 minutes later. It could happen only once or 10 times. But then again, that is just from my observation. It could be happening on a more consistent basis and she is getting better at hiding it, is that possible?

What’s the best advice you have for the parents with a child that has APD?

Bright eyes - The other possibility to consider is absence seizures (petit mal). Those are also brief “zoning out” episodes. The definitive test is an EEG, but a quick and dirty one would be to put her in a quite room, with just you, and have her hyperventilate for a full 2 minutes. Time it, because 2 minutes seems like forever. That will induce an episode in a large proportion of patients. Sorry I can’t access the specific data right now.

Outstanding suggestion! I never even thought of that…which is interesting given that I actually had a siezure disorder during puberty. Grew out of it I guess…but i had a couple of the petit mal seizures myself.

All I can say is I feel for your daughters struggles. I hope your able to eventually figure out what is going on. Just stay on top of it and if the docs are starting to ignore you you go with backup (friend or other family member) that observes your daughter actions in that they can voice what you been saying so docs finally get the message not in your head… She needs you, been doing great so far. Right now your her advocate. Not all of us had parents that caring. With what you shared so far. I can say from your daughter perspective she is thanking you even if she doesn’t say it.
I know what its like not having the needed advocate in hard times like this.

:)So I applaud your efforts so far and keep going.:slight_smile:

Corey

It’s been a couple of months and we have had an ABR. They confirmed the mild low frequency hearing loss. When I asked about auditory neuropathy the Dr. said that she didn’t see any of that happen during the test. She also said that they can only prove AN IF it occurs during the test. So really it doesn’t rule it out. Especially in our case where it (what ever “it” is, right now all we know is she just zones) is rare and we can’t seem to recreate the trigger. I even tried the hyperventilating and I couldn’t get her to hyperventilate longer than 30 seconds. I came in with a list of questions and all I got was a wait and see approach. I just wanted to bang my head against the wall! The only thing we know right now is that at this point in time she does not have Sensorineural hearing loss.

We had a consultation for an FM system and I pre-ordered a system, but I didn’t do a ton of research and just ordered the one hospital recommended. I am here for some recommendations, but I’ll post in the proper forum.

Thanks so much for all of your help and I’ll try and keep you up to date, but it seems to take months to do anything. We don’t go back until late June to get fitted for the FM system, yeah, thats the soonest they could get us in.

where are you located?

San Diego.

if the doc’s have not actually seen her ‘zone out’ they really can’t guess. have you though about consulting a neurologist?