My 3-Year-Old Daughter Might Have Tinnitus & Hyperacusis — We Need Your Help

Hi... I'm here researching for my 3-year-old daughter... severely development impaired.... can't get a diagnosis... however we went to see an eye specialist the other day for her squint...

And hes trialling this new approach to ear issues - teaming his glasses with active noise cancelling headphones...(Bose)...

Anyway the instant he put them on her, her eyes aligned (they are normally all over the place... can't move together)... she sat straight and stopped over extending her head backwards.... it had to be seen to be believed!.... normally her spine is twisted to one side and her head is on a severe tilt and thrown backwards... She has no balance at all - can't sit on her own and needs a lot of core support when she's on my lap....

Anyway we came back and tried the ANC Bose headphones 5 days later and the same thing happened!.... so we are looking into the possibility that she has hyperacusis issues and possibly tinnitus.... (she's non verbal).

Her symptoms of hypersensitivity to any noise even outside - up the road which could bring on her Flight-Fright reflex, freak out and balance problems etc all came on after she had a mild herpes virus blisters on her head at 7 months.... doctors never said anything about her hearing so I never thought that this could be severely impacting on her life.

Since the Headphone Phenomenon last week I've been researching herpes virus and ear problems - tinnitus...apparently they are totally linked!

Sorry this is soooo long. I'm looking for any ideas - experiences - correlations etc on this...

Also we started supplementing with Active B6, Active B2, and B12 a month ago after she was diagnosed with a double partial mutation of the MTHFR gene. And her balance and sleep have started to greatly improve.

Open to all experiences...

 

I have no knowledge of any of this and I can only say my heart goes out to you and your daughter. I hope things improve for her.

 

@Sea Shell
I am sorry to bring bad news, but tinnitus does not have any cures or treatments. Hyperacusis has a treatment therapy called TRT but it's a little controversial and not always effective. Get her B12 tested as deficiency in that can lead to these problems.

You can try magnesium and NAC supplements. These help the nerves and prevent auditory damage.

 

So sorry to hear about your 3 year old daughter. I guess without her telling you what she is feeling their is no definite way of telling she has tinnitus or hypercausis. I personally would just keep her away from excessively noisy environments. Keep windows up when driving due to wind noise and vehicles and keep the house relatively quiet .I am no expert but try not blocking out all noise as she will need to build tolerance if she does have hypercausis. Best of luck to you all.

 

Is your child considered on the autism scale? In looking up MTHFR, it seems that 98 percent of autistic children also have the gene mutation. Sound sensitivity is not uncommon among autistic children. I would not assume she has tinnitus, it’s possible to have sound sensitivity or hyperacusis without tinnitus.

Has her hearing been tested recently? Her hearing can be tested even if she’s unable to communicate. With my hearing loss, I feel like my Bose headphones help filter away annoying background noises, is it possible she is responding to that?

You mentioned her eye alignment. Does she have esotropia? Do her eyes align with the glasses or only with the glasses and Bose?

Sorry for all the questions, hoping the answer to one might help us better offer advice.

 

@Sea Shell Your child's situation is seen on occasion in children's medical units. Care within a children's hospital is also used. I can't comment on much of what may be involved because of complexity.

The MTHER gene is one direct focus for treatment. The MTHER gene is among those with homocystinuria, a disorder where the body is unable to process homocysteine and methionine property. Children with this often develop eye problems, such as within your mention and skeletal abnormalities. Sometimes blood clotting is also abnormal.

A support article. https://ghr.nlm.nih.gov/gene/MTHFR

 

Hi @Sea Shell,

I was wondering if you're familiar with a supplement that can help those with the MTHFR mutation; called 5-MTHF (by Thorne). I originally bought this in the 5 mg. size, and it was WAY too much for me. The link above is to a 1 mg. sized serving, but I would caution you to even be careful with that size if you decide to give it a try, as it can pretty significantly (and immediately) increase detoxification activity. There are a lot of comments at the above link on Amazon which should be helpful in understanding what this supplement can do.

Given your child's extreme sensitivity, you may also want to look into various colored glass lenses. I don't really know much about them myself, but have heard of extraordinary cases where wearing glassess with different colors has the ability in some cases to totally transform a person's life. For some reason, the description of your child makes me think that might be a possibility with her.

I'm also a big believer in lipsomal Vitamin C, which has been known to inhibit viral loads. I don't know if your child still has an active herpes virus, but if so, Vit. C (and a number of other natural supplements) could be very helpful.

I would also add that I've recently become a big believer if mild HBOT (Hyperbaric Oxygen Therapy). It can dramatically reduce inflammation, stimulate the immune system, improve digestion, and do so many other good things. If there's any kind of chronic infection going on (which it kind of sounds like), mHBOT could be very helpful, as it has the potential to restore a lot of brain and neurological resilience.

Not to leave you with too much, but given how well your child responded to those supplements you mentioned, it's possible she may be dealing with pyroluria as well. In which case, supplements like zinc (and others) could also be helpful.

I've read some amazing success stories of people using reflexology and acupressure to dramatically improve situations similar to this.

Best to you and your daughter...