7-Year-Old with Tinnitus

[Calypso]

This is my first time posting but i came across this informative and supportive forum a few months ago. Some background on me - I suffer from (what I understand to be relatively mild) tinnitus myself. I first became aware of it about 2 1/2 years ago. In my case i think it's due to too much loud music, and the final straw was when I was at a tourist attraction and there was an incredibly loud 21 gun salute right nearby. When I realised the T was here to stay, I suffered from feelings of panic and anxiety. I googled obsessively and totally fixated on it. Thankfully, for the time being, I believe I have pretty much habituated to it. I probably have this luxury because it is not too loud (although TBH it seems pretty loud in silence and i have had a couple of spikes that eventually settled down but at the time threw me into a total tailspin.)

Anyway, this is not about me, it'a about my 7 year old. He has had many problems with his ears for his whole life. He had ear tubes at 4, due to constant infections. Then he developed sleep apnea, and had to have his tonsils and adenoids removed two years ago. This has greatly helped with reducing the ear infections, but he still has huge turbinates in his nose and is a really noisy sleeper so he still has stuff going on! He has had many course of antibiotics due to the ear infections and now I wonder some of them were ototoxic.

He had intermittently complained of ringing in his ears over the past few years but then it seemed to settle down and he would stop mentioning it. However, about four months ago, it become a constant problem, and is really bugging him. He needs to listen to music to get to sleep and if he wakes during the night he gets (understandably) distressed because the T seems so loud in the silence. However it's not just at night that it bothers him, he can hear it in a noisy car (in fact all the time if he focuses on it) but he doesn't seem too troubled during the day, just at night.

I took him the ENT Dr in a total panic as this really pushed my own buttons (and, i might add, caused me to relapse somewhat). The doc said tinnitus in children is "incredibly rare" and it should resolve. He looked in his ears and said that it looked like ETD, and prescribed steroid nasal spray for a few months. (We are also looking at an MRI soon if it doesn't get better.)

Trouble is, it isn't resolving. And from all i have learned, after this amount of time, it likely won't resolve itself. The way he describes it, it has centralised in his head and it quite loud. Much louder than mine. I feel so desperately sorry for him that he has this to put up with already at his young age and I am really concerned about him in the future if it gets louder. I just feel so helpless. I know how I struggled with it and it feels far worse a prospect to me that my child has to endure such an affliction. But while i don't downplay his feelings, I make sure I am positive about it when he brings it up, saying he will get used to it and his brain will learn to tune it out. I have also told him that there will probably be some medicine that will help in the future. But i don't know what is the right thing to say or do, really. There isn't much help for adult tinnitus sufferers out there and even less for children.

I am not sure whether i am posting this in the correct forum, please feel free to move it if it is not.

 

[Hudson]

Thank you for seeking out information and support, you sound like a very good parent.

I like to think people who have had tinnitus from such a young age generally adapt to it fairly well. Everyone that I have ever talked to who have had it either their whole lives or from a young age are unaffected by it mostly. The brain at a young age is still very plastic and hasn't had time to become "hardened" in the way our adult minds have. When an adult has tinnitus onset, they have years of reference that tells them it is not "normal" and that there is something wrong with them. A child will habituate much more quickly in my opinion.

Give him lots of love, he will turn out quite alright. He's very young, and treatments for tinnitus will be just around the corner in his lifetime.

 

[Calypso]

Thank you Hudson, for your kind and supportive reply. I really hope you are right.

 

[Danza]

@Calypso
As a mother and member of this community I understand you! As a mother of a son with severe ear problem I understand you even more.

To make long story short: My son has suffered/suffers middle ear cholesteatoma has had 2 surgeries and waiting for more. Everythind started whe he was 4 he is now 12. T he doesn't have. In a first surgery his hearing changed - his inner ear is ok, but the the ossicles had deterrioted and the sound doesn't conduct. He has problems hearing with the ear affected (so many small things with this disease, but I don't want to go to the details). First half year after the surgery he wasn't himself. I asked him "why don't you play with the others", he answered " Because I can't hear them" etc. I was sick because of this chance .... Now when I ask him: "Does it bother you that you have to concentrate more to hear?" he says "Not really". He only get's best grades from the school, he is reallly empathic and funny, calm boy. And I couldn't be more proud of him. We still have a long way to go....

I think that with children we always have to keep up with the hope and stay positive!!! I think more facts can come in to the picture when they can process it better - when they are older. If we say that you will have this forever - it can be a scary thing and we don't know that. First I thought that hearing is the problem for my son - but it is really not an issue at all. I think it is because this happened when he was soooo young, he is compensating his hearing with other things and with the good ear. My point is that the kids have an amazing way of learning to adapt because they are "not ready yet". Maybe it is because of brain plasticity.

We have to stay positive and find our ways to make our children stronger to put up with this issues. Good luck - I am sure that thnigs will get better. There is many things you can do for him! You will get hints from this forum for sure. Hang in there, maybe it could be a could idea to see a therapist to help him with the issue.

Danza

 

[valeri]

@Calypso
your post brought tears to my eyes, poor little darling, life is so unfair.
Hudson is right in saying that your son has a very good chance to habituate to it and live normal life.
Also we are all hoping that the possible cure or treatment is not too far away.
I'm sorry I don't have much to say but keep strong and keep us posted on his progress!
All the best

 

[nogood]

@Calypso i feel so sad... :'( as a adult i could not adopt to this T. for a kid ..................... i can not imagine...

aside my emotions, your son will probably will get use to T, all u need to do is encourage him to be normal, human mind is extra ordinary thing, since he is young he will adopt to it soon. Best thing you can do for him now is try and find out what is wrong with his health in relation to his constant infections and ETD problem. Try to find out what is the trigger - food, environment what ever the cause try to find out.

As for the ETD issues my homeopathy doctor [he is actually a friend of mine, he did not give me any medication ] suggested simple tips like keeping the room clean [esp the bed and pillows- clean or change them every day if possible], avoiding dusty environment, diary products, plenty of water [esp when u wake up lots of warm water to help flush the system], invest in humidifier as air conditioned environment removes the moisture, air purifier for bed room, plenty of out door activities, a detox diet and 75% of time healthy clean diet.

personally i would suggest few main things to help resolve his ETD,
-keep is bed and room as clean as possible-- vacuum the room/ change or dust his bed-sheet and pillow covers every day : a must.
-humidifier : a must
-avoid diary products : a must
-no fast food/oily food : a must
-lots and lots of green
-plenty of warm water : a must
-holy basil leaves/supplements -- if u can find live plants, soak leaves in water over night and give it to him every day along with water, or make tea from the leaves. It has a strong taste but it is very good for health.
-plenty of fish or fish oil
-plenty of out door actives [keep him distracted] , plan his evening actives such way he gets tired and sleep very soon, be it going for long distance walking, cycling, exercising. : a must
-avoid contact with pet, sad but yes need to avoid them as they could be causing some sort of allergic reactions or could be source of the problem.

At this situation would suggest give more concentrate/be concerned on him habituating to the T and getting his health better than worry about his studies.

and when it comes to the T ... we all are helpless...

hope fully resolving his ETD will help resolve his T.

if you can please keep us updated on his status..

 

[Sound Wave]

One crucial thing is for you NOT to show your fear about T to your child. If you do, most likely your child will learn to fear T as well -> troubles and we all know too well. Stay strong and positive! Children many times habituate MUCH MUCH better than we adults.

 

[Danza]

@Calypso

One thing came to my mind. One of my husbands relatives who is around 20 now has had T since a very little child. he seems to be doing fine, just got in a finest university, did some higher "degree" at the military etc. Doesn't seem to be affected about the T at all. And I have understood that it is pretty loud.

About your situation: You are in a middle of crisis now with your son, and now you have to little by little find a way to solve the situation so that you and your son will get better. Try to do a nice thing around his T: choose together some good music from the internet that he can listen during the night, something that he really likes. Or find a "funny thing to listen" like "shower, river, ocean" - How funny is that!

My son has a favourite thing he likes to eat. Guess what, we always eat that in restaurant after the visit to hospital - how cool is that!

Danza

 

[Jay M]

There will be a treatment in his lifetime if not in the near future.

 

[Calypso]

Thank you all so much. It has helped more than words can express to talk this through with people who truly do understand. I feel like I am the only one in my son's life who gets how distressing T can be, and I have to overcome my own demons when I support him. I am very aware that i must not taint the way he understands and processes of this, with my own fears and negative feelings about it.

@valeri - you are very kind, thank you!

@Danza - your son sounds like a trooper, and it's very inspiring to hear how he has coped and really thrived, all the while dealing with these ear issues. You must be so proud of him. Thank you so much for sharing about him and your husband's relative. And I agree that we must stay positive! This has clearly pushed my own buttons regarding T, and he is very sensitive so may have picked up on that despite my best efforts to hide it. But now I am feeling more hopeful and positive and open to talking about it with him when he needs to.

@nogood - Thank you for your support and practical suggestions. I am going to print them out and give them a try. Recently I have wondered whether allergies or intolerances may be part of the reason for the ETD. He also gets eczema. We do have a pet and he spends a lot of time with her. So, lots to think about there.

@Sound Wave - you are so right. That has been one of my fears - that I somehow caused him to "tune in" to it because he may have heard me express negative feelings about my own T...

@Jay M - Thank you, reading some of the threads on this forum have given me some hope that you may be right.

 

[Grace]

Your such an awsome parent. All i gotta say is your son will absolutely be fine and go on with his life, and like others said there will be a cure or effective treatment in his lifetime, even ours(fingers crossed), and just like were all in this together, you and your son are in this together and with your great and loving parenting, you can guide him and help him when he needs it and when your having a hardtime you can always think of your son and be with him and you both "understand", and its easier having family let alone people you know that understand. Im sorry you both are dealing with this T, but in ways your eachothers inspiration to carry on. Were all inspirtations to the the world, and everyone with a disability or illness cause at times its not easy. Wish you both the best of luck, and try and stay happy and positive

 

[nogood]

Thank you for your support and practical suggestions. I am going to print them out and give them a try. Recently I have wondered whether allergies or intolerances may be part of the reason for the ETD. He also gets eczema. We do have a pet and he spends a lot of time with her. So, lots to think about there.

Inflammation of some sort causes ETD which results in infection and fluid accumulation in inner ears, young kids are more susceptible to ETD and ear infections because their tubes are still at development stage and they are more closer to mouth.


as suggested by @Sound Wave keep ur fears out of his sight and encourage him to be normal and active..
here is one example

 

[Calypso]

@Grace - Thank you so much!!

@nogood - wow - what an inspirational young man, and family! We could all learn a lot from them. Thanks!

 

[Grace]

Jesus, thats like the second vid i watched this week that made me tear up besides that als one that i couldnt take watchin! But in all honestly i watched that and am actually greatful with T cause eyes are soo important. Just like sayin id rather have ringin then deaf, and floaters rather then blind. Just my opinion though. Bless that kid though, thats inspiring.

Inflammation of some sort causes ETD which results in infection and fluid accumulation in inner ears, young kids are more susceptible to ETD and ear infections because their tubes are still at development stage and they are more closer to mouth.
View attachment 2708

as suggested by @Sound Wave keep ur fears out of his sight and encourage him to be normal and active..
here is one example

 

[nogood]

yes its very inspiring..
sometimes we all need something to hold on to or little nudge in the right direction to keep us moving forward.. to me no disease or defect is lesser or higher than others.. they all have their difficulties.. we just have to learn to deal with it..

Jesus, thats like the second vid i watched this week that made me tear up besides that als one that i couldnt take watchin! But in all honestly i watched that and am actually greatful with T cause eyes are soo important. Just like sayin id rather have ringin then deaf, and floaters rather then blind. Just my opinion though. Bless that kid though, thats inspiring.

 

[russiancarl]

I am so sorry to hear about the troubles with your son. I'm not a parent but I can completely understand the horror of having your child develop something that has given you so much trouble. It's not the life you want for them.

With that said, the best thing you can do is remain positive and as another poster above said - don't show your fear or concern. Your child will feed off of that. Be positive and try not to let it affect his life. Make him go out and do all the normal kid things.

It's like how we deal with things - the busier you keep yourself the less you notice your T. I think this should work doubly better on children. Make sure to enrich your environment with sound. If he's waking up at night and unable to get back to sleep then leave the radio on all night if it helps him or better yet get him a white noise machine. Get anything that plays a pleasant sound for him. It doesn't have to cover up all the loudness but just any other sound in the room, as we all know, is such a help.

Also, there is no reason to believe that just because this bout with ringing is longer that it won't eventually resolve. He is young and his ears should be healthy. If it truly is ETD then it is anyone's guess when that will resolve. Doctors can't really tell you... if you look around the internet some people are stuck with it for years. Stay positive. It's the only thing you can do.

Best of luck.

 

[jeffie7]

Reading this while trying to put down my 14 month old.

It's amazing how kids adapt. I have a friend who is missing a full arm from the shoulder and leg he now goes around helping adults and kids with disabilities like missing limbs and he always says it's the kids that amazes him. They bounce back and move on where the adults tends to focus on their problems and hang on to what they don't have causing major set backs in the healing process.

I believe your son will learn to tune it out, at least to the point where it doesn't bother him or better yet as the ent said. It goes away on its own with time.

What really sucks is, as you know, your son is on his own, very few people know what it is. Not trying to say it's good that you have T but it is allowing you to relate with him. Normally people wouldn't know what it is or what it's like and would just tell the kid to ignore it or stop making stuff up. You understand him. Most parents wouldn't.

Best wishes to you and your son. Please keep us updated. I can't wait to one day read about how it doesn't bother him anymore.