childhood hearing loss--help, please

[Rowan Tree]

Long story short, 30 month old DS1 has a speech delay which our speech therapist diagnosed as Apraxia last month (oral motor issue). We had the big autism evaluation on Monday and, though they didn't place him on the spectrum, the hearing tests showed some hearing loss in his left ear. Everyone kept asking me if he was ever in an accident or had some other kind of brain injury, or if he had a history of alot of ear infections. Never, never and never.

The audiologist couldn't determine how severe the hearing loss was, but wanted to see him again in about a month because he's been sick and she thought there was a tiny chance the test was wrong due to plugged ears caused by a cold (but seemed very doubtful as she saw no fluid present in his ear). She wanted to either test his ears again using the same method, or do an Auditory brainstem response test, which he would have to be sedated for. Have any of your little ones had this done?

My husband wants to do the Auditory brainstem response test because he doesn't want to have to take time off work and drive 2 hours to the Children's hospital to have the less evasive test done if it might show the same result and have to go back to do the Auditory brainstem response test anyway. As the parent who would be in the room as they inject my baby with medication that puts him to sleep, I'm inclined to do the less evasive test again when he's not sick rather than traumatize him (and myself). He's so sensitive around strangers and gets so scared to be in new places, especially hospitals/doc offices. Just the thought of him laying on a bed, screaming as they put the IV in, with specialists all around him in case he has a reaction to the injection, as he slowly fades into a deep "sleep." Breaks my heart!

Besides all that, if he does have severe hearing loss in 1 ear, what's it from? There is no family history of this kind of thing at all. Can hearing loss just come out of nowhere? And if so, will it only get worse?

He was born 4 weeks early and had pretty bad jaundice (not sure if that makes a difference). The hearing screening at birth was normal.

Couldn't keep my story short, afterall.

[emlynsmom]

I can't answer all your questions but wanted to make a suggestion. My DD (15 mos) just had her second ABR done. For the first she was so little (2 weeks old) that they just did it while she was sleeping. They have a new one now where they do not have to be sedated. It must be less sensitive to movement. She had to sit quietly for almost 2 hours but she actually did ok - I held her, even nursed her some, blow bubbles, and we let her watch a DVD. Not all ENTs/audiologists have this yet, but it might be worth asking around. I didn't want to have her sedated for a variety of reasons so this worked well for us.

Good luck!

[starlein26]

It'll be just fine, really.

I was also SO worried about these, what I now know to be, very minor aspects of getting a diagnosis. Will he get an MRI as well?

Best wishes,

Esther

[cdahlgrd]

Hi, we are a family dealing with unknown cause of hearing loss.

It is hard to get young kids to sit still long enough to get a real good test on each ear and program the hearing aides properly. So, you may want to go ahead with the sedated test, but I would do one more standard test first.

However, if they find hearing loss, they will want to do an MRI, and because of his age they will want that sedated as well, SO ASK IF THEY CAN DO THEM BOTH TOGETHER.

Most hearing loss in children is of unknown cause. They assume it is genetic, but they don't know. My oldest was in a study that may show that a virus at birth could cause it too. They just don't know much about it because not that many kids have hearing loss.

Did you have newborn hearing tests?

You will want to get a good test and put him in hearing aids if needed, asap. It will make a huge difference in his language aquasition. Even if he loses his hearing eventually, having a good foundation of oral language is a huge help.

You may want to start watching Signing time videos, to start learning some sign language. It is very helpful for all kids, but especially with a child withhearing loss. It is easy and fun to do together.

There is tons more. Check out www.handsandvoices.org for a GREAT organization for families dealing with these issues.

PM me for more info. I have tons.

[2boyzmama]

Hi!

Fellow mama of a hearing impaired kiddo here

My youngest has a genetic syndrome that includes a malformation of his soft palate (which leads to severe fluid buildup in his ears), his external ear canal (his canals are very constricted which makes the fluid that much harder to drain out), and his middle ear (his left ear drum is only about half the size it should be so it conducts less sound). He is capable of normal hearing, actually has one hearing test he passed (a behavioral test with probes inserted in his canals to artificially open them). He had surgery a month ago to put tubes in, and will likely have reconstructive surgery of his ear canals in a few years. In the mean time, the dr we're seeing says that he wants to put him in hearing aids. We go on Monday to be fitted for them!!

His syndrome involves a severe speech delay even with perfect hearing, so we're being very aggressive with his speech therapy and protecting his hearing, we also use sign language along with verbal communication. If an otherwise normal child had his ear and palate malformations, the dr probably wouldn't recommend aiding because his testable hearing loss is very slight. It's really just an issue of getting the sound into his ear drum, and that's hard to do when his canals are so constricted, something as simple as wax buildup muffles his hearing, then add fluid behind the ear canal and the poor kid really has trouble.

He did not pass his newborn hearing screen, but the drs didn't do anything about it because he had severe swallowing and breathing problems the first few months and we were more focussed on those. He had a cat scan of his middle ear two months ago and they actually didn't even have to sedate him, I was able to keep him calm and distracted (it did require having him swaddled and tied down, but he hardly struggled, and he didn't cry. I was ready to intervene if he got too scared, but we really wanted to avoid having to sedate him if possible)

I would recommend that you re-do the hearing test (your hubby doesn't have to come for that, it's just a simple hearing test, have him save time off work for the really important appts) and see what it says. But don't hesitate to do an ABR and/or cat scan/MRI. The sooner you know exactly what the problem is, the sooner you can begin getting him the appropriate treatment.

All of us here on this board have held our children down for tests and procedures, I'm sad to say that Connor and I both have become pretty resilient to things that would have my heart break with my first son. It's an unfortunate side effect of having a special needs child None of us like it, but seeing our children as happy and healthy as they can be is worth every needle poke, every surgery, etc.

But by all means post about it so we all know...we'll support you! We'll tell you tricks of the trade that we've learned through the years. For example, many many hospitals, even children's hospitals, give out the wrong information about breastfeeding before/after surgery or sedation, so be sure to come here and ask us. We've all learned how to work around the system.



Good luck!!!!

[kokotg]

Just seeing this...my son has a moderately severe hearing loss in his right ear. We have no family history of hearing loss, no ear infections, etc. etc. We assume his loss is genetic, but we may never know exactly what caused it (we saw a geneticist and were referred for blood tests, but we haven't gotten around to actually doing them yet. Sometimes they can pin down a specific genetic cause, sometimes not). I can't speak to your testing issues because DS was older when his loss was diagnosed (5), so there was no need for a sedated test. It's great that you're catching this as early as you are. Ari never had speech delays, which meant we never suspected hearing loss, but he did have a lot of other problems that are often associated with unilateral loss--mostly a lot of social anxiety and fear of being/talking in group situations. He has a hearing aid now, and it's made a huge difference. There's no way to know, without knowing what's causing it, whether the loss will progress or not. Ari goes to the audiologist every 6 months for testing, and his hearing is staying the same so far (a year and a half after he was diagnosed).

[deleria]

Hi mama,

Another mom dealing with unknown hearing loss here. Our two oldest boys have bilateral hearing loss (both ears) which is believed to be genetic. They both wear hearing aids and have run the gamut of tests. The most important thing for our boys is to feel comfortable with the audiologist performing the tests. Most of them have made the boys feel comfortable enough that they willingly sat for the procedures. However, I would rather get a good response than a poor one (which we've had, and had to re-do those tests) so I would probably opt for sedation if it were needed. Also, I've seen firsthand how much well-programmed hearing aids have helped my boys and how poorly programmed ones have hindered them.

Dealing with sedation is no fun, but it wasn't as bad as I thought. Our oldest broke his femur last summer and needed two operations. He sailed through the anesthetic, thank goodness. It's not as big and scary to me as it used to be.

I'm going to echo what's already been said: There are really no good answers for most types of hearing loss. We can't find a reason why Aerik and Declan are hard of hearing. I wracked my brain for months trying to come up with a reason. When we only knew of Aerik's loss, my mother actually said it might be our fault because we "used to play the music quite loud in the car". Or not. But thanks for the support mom :

Anyway, I wish you, your son and husband all the best. Please let us know how things go! I'll be thinking of you.

[fairejour]

My dd also has a hearing loss, her's is progressive so she passed her newborn screen and a follow up at 6 months! We started to notice a speech delay at around 18 months, so that is how we found the loss. We have a clear indication as to why she is losing hearing (audotoxic drugs) but that doesn't change the treatment or outlook for her future. I know the beginning is tough so feel free to post more questions, or pm me.

Also, the sedated ABR is a very useful test especially for young kids. It will confirm the type and degree of hearing loss. I would try to get it done as soon as you can. Also, make sure you see a pediatric audiologist, probably one from a children's hospital, they are much more skilled at testing and aiding a child.

[daytripper75]

My ds was born severely deaf in his left ear from congenital cytomegalovirus. I got CMV when I was 7 weeks pregnant. (We pieced it together after he was diagnosed with the hearing loss.)
cCMV has a lot of really scary prognoses out there so beware if you are going to read about it further, you don't want to scare yourself or get worked up. (Like I did! I would actually recommend asking the doctor about it before looking anything up.)
Our ENT said that something like 60-70% of unilateral hearing loss is caused by CMV.

We did an ABR with ds when he was still young enough to not need sedation but I know that our docs are really cautious about ordering another ABR now that he will need sedation.

Sending good thoughts your way!

[loriforeman]

ah...i'm another mama with a hearing-impaired kiddo.

jordan is almost ten...she failed her newborn screen and her six-month check-up...but at the time, they felt it was an auditory processing disorder...and then it was asperger's...

took FOREVER to finally get her in aids. her loss is bilateral and severe, at an 85 decibel level...however, just two years ago it was only 78 decibels. next stop: MRI...

it took SIX hearing tests when she was in school before i could convince anyone to send her to children's hospital...because her loss is on the sensorineural level, she only tested as having a "slight" conductive hearing loss. we had made the mistake of moving to a different city that only had one pediatrician, and he was busy with a family tragedy of his own (son dying of leukemia).

when we moved back home, her ped listened and got us in...and boy was that doc shocked! she TALKS, you see...quite well, when she's not in her own little world. she has a lisp, but does NOT sound anywhere near like she should. somehow, my little introvert managed to learn to read lips like a friggin' pro.

i noticed a BIG difference between the clinic at children's hospital and the ENT here in town...the testings at children's are much more complicated and complete...and they really deal well with the kiddos. jordan is completely at ease, and feels special and pampered there.

i get very nervous with the idea of sedation (because of how my littlest reacts) but i'd do it in a heartbeat if needed. i would, however, drive that two hours to children's...just to be certain she was getting the best care possible.

[Literate]

My dd2 is apraxic and we had both the sedated MRI and brainstem audio evoked response (BAER) test done. I have mixed feelings about having sedated her twice, just to find that there was no brain malformation nor was there a hearing issue. However, I can now sit here and say, "I know there is no physical reason for her speech delay. It is definitely apraxia." So, that's good.

One small piece of advice. If at all possible, have another adult with you for any sedated test. They are heavy and limp and hard to get to the car and buckled in and then they need some hand-holding as you drive. Having another adult is incredibly helpful.

Since we clearly have very similar kids, let me know if you have any specific questions. I also have some good online resources on apraxia to pass along, if you are interested.

[Rowan Tree]

Thank you all for your wonderful and supportive replies. I was able to schedule him another OAE test next wednesday, before the ABR which is scheduled for the 28th. If we do end up having to do the sedated ABR, can I ask what time of the day any of your little ones had it done? Super worried about the whole fasting-for-6-hours-prior thing. We'll be leaving the house around 7:15 am then driving 2 hours to get to the children's hospital by 9:15 check in, then have to wait ANOTHER hour before he is sedated. The thought of that car ride with a hungry toddler who won't sleep in the car...

[Rowan Tree]

[Momily]

Originally Posted by Literate

One small piece of advice. If at all possible, have another adult with you for any sedated test. They are heavy and limp and hard to get to the car and buckled in and then they need some hand-holding as you drive. Having another adult is incredibly helpful.
.

It's interesting to me how differently kids react to these things. DS (then 2) was sedated for a g-tube change (I assume the sedation part is the same) slept in recovery for hours (they wouldn't let us go until they'd seen him sit up and respond to us) and then woke up full of energy. The nurse came over and asked him if he thought he could walk and he looked at her like she was crazy and said "I not walk, I WUN" and took off down the hall with me chasing him.

Of course, judging from the look on the nurse's face this probably wasn't the typical pattern for kids waking up.

[2boyzmama]

Sedation, for me, has been much scarier in thought than reality. Connor had sedation/anesthesia 5 times before his first birthday (3 surgeries, 2 tests).

First of all, do you breastfeed? If so, breastmilk is considered a clear fluid and can be given 2-4 hours before sedation. One of the children's hospitals near us for some strange reason only considers it a clear fluid if the child is under 6 months old. After that they say 6 hours. I just ignore them. I read on the American Association (or academy??) of Anesthesiologists webpage the studies done on gastric emptying and the risks of sedation and then made a decision to allow Connor to nurse 3 hours before his procedures. I don't tell the hospital that...I tell them 6 hours just to not get in an argument.

And you can nurse him in the recovery room immediately after the test, there's no reason for him to "wake up" fully. I nursed Connor immediately after he was extubated after his lip repair surgery, even though his mouth was full of stitches and was so swollen he couldn't close his lips. The drs were very nervous, saying that they wish I would just let them give him IV hydration, but I said that I wanted to try to nurse him, and if he did it, then great, if he didn't, then I'd allow the IV (it was already in, but heplocked) He did nurse, and he did it well, and he didn't need the IV at all. They took it out a few hours later.

If you don't nurse, then I'd recommend an appt as early in the morning as you can get so that he can sleep. It's hard for a kiddo to be awake all day and not able to eat. It's hard on the parents to have to drive somehwere at 4am for a test at 7am, but it's worth it to keep your son happier.

Definitely try to get the ABR and MRI/CT scan done at the same time. No need to sedate him twice.

And, although it's nice to have two parents, I have done all of Connor's surgeries/tests by myself. My husband always stays home with our older son. The kids usually just want mommy anyway, and two adults in the recovery room may be very cramped. I've also done three hospital stays with Connor by myself, although that is a little harder. No time to sneak away to eat, or shower. I would suck up to the nurses to have them watch him so I could have 15 minutes free time. I also would ask them to help me get him settled into a wagon and show me how to take all the equipment with me (IV stand, O2 monitor, etc) so I could go on a walk. 3 days alone like that is my max, though, after than I really start to get crabby and need a break.

Okay, I'm rambling now about things that don't pertain to you! Sorry

[Literate]

Originally Posted by Momily

It's interesting to me how differently kids react to these things. DS (then 2) was sedated for a g-tube change (I assume the sedation part is the same) slept in recovery for hours (they wouldn't let us go until they'd seen him sit up and respond to us) and then woke up full of energy. The nurse came over and asked him if he thought he could walk and he looked at her like she was crazy and said "I not walk, I WUN" and took off down the hall with me chasing him.

Of course, judging from the look on the nurse's face this probably wasn't the typical pattern for kids waking up.

Oh, right, sure! They are all different. She woke up very soon after the sedation, so no doubt she still had more in her system. Her other problem is that she's very sedation-resistant and needs almost double the dose of average kids. And it still doesn't keep her under very long. Built like a horse, she is.