11 month old with down syndrome snorting

[Whyme210]

My daughter snorts like a little piggy all day. I know her nasal airways are thinner and i was told it was this first but she doesnt do it at night. My health nurse has said shes doing it on purpose because she likes the noise. I have severe misphonia and the constant all day snorting is getting to me . Her occupational therapist got a fright and rang her doctor over it said he hasnt heard anything so bad from a baby before. Im afraid if shes doing it on purpose its an autism stim i would rather if it was just her nose that could get operated on. For now i dont know how im gonna handle the noise. My misphonia can get severe cause panic palpitations and fear. I am trying my best to try drown it out

Lotsof babies go thru phases of shrieking or other sounds
It will pass
Ignore

Is your dd under ENT and Respiratory? If not, I would ask the GP for a referral to both. My dc also has DS and was a very noisy breather as a baby and did have some ENT/respiratory issues that were causing this. she had her adenoids removed at around 10 months old (plus tonsils a few years later) and it made a massive difference.

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No she isnt. Her paedetrican keeps telling me her airways are smaller because shes down syndrome and shes getting colds and thats just how it is and thats the end of it and hes brushing it off. I have an appointment with him next week and im going to make him give me a referral because it is genuinely so bad. Even if im on the phone no one can hear me because all you can hear is the snorting . Despite the noise being uncomfortable for me she looks like shes struggling alot so i dont know why its being brushed off. And as i said her nurse said shes doing it on purpose because she likes it.

Loop earplugs are meant to work wonders to help parents not become so overwhelmed ... they have a specific parenting one

Thanks for that recommendation. Ive just got two pairs!

Whats the progress with the misphonia treatment?

Absolute rubbish that she's doing it on purpose because she likes it. She's 11 months old. She needs a referral to ENT.

Is it when she's exerting herself? Are they sure this isn't because of her physical health eg heart/lungs?

There has been no update. Ive just got ear plugs. My misophonia can be extreme. Ive had a few public breakdowns with it, crying etc. I dont know how parenting a special needs child is going to go dealing with such strong reactions to repetitve noises. Im so scared about the future, noone is taking it serious

No its not just when shes exerting herself. It can be at any time. She could be silent and then get into a fit of doing it and then go silent breathe normal and start again. Her heart and pulmonary hypertension with lungs have been ruled out. She does have chest retractions at times but cardiologist said heart is clear and its not causing pulmonary hypertension and thats his job done someone else will have to figure out the chest retractions he said. Havent been referred to anyone else for investigations since and that was months ago. As i said her main doctor keeps saying shes has down syndrome thats what her nose is like and shes getting colds and acting like its just something we have to deal with, i will be giving him a piece of my mind next week.

Is that a reply to me?

Are you in therapy, on medication?

Becuse she is only 11 months old, she will make lots of noises over and over, very loudly throughout her life. Whats the action plan for you being able to cope with that and not centre the problem within her?

(notwithstanding actual medical interventions she may or may not need for her own problems)

And what if it ends up being something you do just have to deal with?

I'm glad they've ruled out cardiac issues and pulmonary hypertension. I think you still need to get everything else ruled out..as if it is an ENT issue it needs to be looked at.

I think you should try ear defenders/those noise cancelling ear bud things. As much as jts difficult for you, she is going to make lots of noises/repetitive stuff. Kids can be very annoying and it's useful to have some strategies to manage.

Maybe this is something that her OT can help you with. It could be that you've got sensory issues that they can advise you about.

I am going to start therapy and hypnosis . But from looking into misphonia i dont think theres anything that can help. I dont know if its just misphonia on its own or am i undiagnosed autistic. I know kids can be noisey. I am worried about her disability causings her to stim which i wont lie ive always been very scared of.. there is no plan in place, her dad will have to take her if it gets bad. Since ive had her and got the diagnosis i am worried about the future and the repetitive stims that could occur , i am crying every day worrying about it. My family and friends just keep telling me that this is the hand ive been dealt and have to deal with it shes my daughter but i am riddled in fear and anxiety. Its really something out of my control that noone has been taking seriously

It's awful that no one is listening to your concerns and anxiety. Your fears shouldn't be dismissed like this. I'm not sure whether you'd be struggling to get yourself hears if she didn't have a disability.

You can't help that your anxiety and misophonia are causing you so much distress. I think you should speak to your health visitor or GP about how you feel.

I have an autistic teenager, just because it's the "hand I've been dealt" doesn't mean I'm not allowed to struggle. You are allowed to feel how you feel, and you are allowed to admit you're struggling.