DD is nearly 6 and still unintelligable. I can't stop sobbing(long)

[pramspotter]

She has had bilateral glue ear and since she was 4 months old both of her ears have wept goo and stank.

She has had antibiotics, grommets and now a mastoidectomy. All have failed and the ears are weeping. Her speech is appalling

SALT keeps saying that there isn't much improvement speech wise and there won't be until her ears are sorted. All she gets is a 1/2 hour a week at school. She can speak single words okayish but a long sentence gets really jumbled.

Paed and ENT docs say that she isn't deaf enough to have pronounciation problems. They think that something else is he cause.

Her receptive language, reading, writing, and math skills are super advanced for her age. But my heart breaks when she can't make herself understood and she is becoming very shy and insecure.

SALT and docs keep passing the buck. I have have been crawling up their asses since she was 3 years old saying I think she has verbal apraxia. They have continued to blow me off. "Leave it for a year and see how she improves" "It's her ears" "Its not because of her ears". It will get better blah blah blah.

Now I have just had a letter from school doctor basically saying oh shit she isn't improving maybe someone should investigate further. Yeah no shit sherlock. She has been under the care of the half assed SALT, Paed, and ENT for YEARS.

She is 6 an very bright but sounds like a 2 year old. She also talks loudly and when others hear her I get shitty looks.

My 8 year old DS is autistic. I don't think she is on the spectrum. I just wish to know what the hell is going on and if it is going to get better.

It occurred to me today that if she is going to be 6 years old soon and things are still bad...then they might still be this bad when she is 20.

[pramspotter]

Thank you. I will check that book out and do a vid for Nancy Kauffmen as well. I never really heard of her before. I checked out her website in depth last night. We have close family out in Detroit where her facility is... I may just take a trip out there.

[pramspotter]

I never did consider that. But it makes sense. She gets exzema sometimes. Let me know about that recipe.

[slightlycrumpled]

Hi pramspotter, She sounds vey similar to my son. He is just 5.

More recently we found out he has a type of cleft palate which doesn't enable him to make any of the sounds which are formed at the back of the mouth. This has also added to his ears running almost constantly. He is moderately deaf and we know this isn't purely down to the glue ear.

He did for a good while wear a bone conductor hearing aid and it did work well. He has also been prescribed a long term antibiotic which he takes only at bedtime and the difference has been amazing. So good in fact that he has now gone on to wear the more traditional type of hearing aid.

Good luck and I hope you get it sorted it is very difficult when you know something else is going on but you don't know what iyswim.

[jimjamshaslefttheyurt]

If she can produce single words well but not longer utterances then I think you definitely need to get apraxia ruled out. It does respond well to treatment, but it has to be specific apraxia treatment. Nancy Kaufman is definitely one of the world experts. I think she's pretty used to working with kids in the UK as well now.

[pramspotter]

Thank you Jimjams. This is why I think it is something other than the ears that is causing it.

[ChopsTheDuck]

I'm sorry to hear you and your dd are having such a shitty time.

I'm hearing impaired and I agree that it sounds like something more. My speech was affected until I was about 10-12 years when it finally caught up, but it was all speech. If it was the hearing, I really dont see why there would be a difference between single words and sentances. Everything I said was muffled and unclear.

Also, deafness doesn't cause shouting. Most hearing impaired people I know, and myself don't shout. Often it goes the other way - we talk how we hear so I actually talked very very quietly as a child! I wonder if the shouting is due to her stuggling with speech.

I do hope you get some more help soon. It is so hard though, to get help with speech where there is a hearing problem. ds1 has sn and wouldn't pass a hearing test because of it. They assumed his problems with speech were down to hearing even though I knew his hearing is fine. It seems to be set in stone somewhere that speech and hearing problems HAVE to be linked and there can't be any other possible cause.

[bullet123]

I hope you are able to get the help your dd needs.

[pramspotter]

My trust has flat out denied that there is anything such as a BAHA hearing aid. Luckily she has been referred to another trust anyway. I am going to mention it to the doc there.

[feelingbitbetter]

Bump for mm22

[mm22bys]

Thx for bumping.

[monstermansmum]

Hi cant really help re the speech as my son has Angelman Syndrome and doesnt speak, however he did have continuous smelly ear infections. He has had grommets 3x, adenoids + tonsils out etc (didnt work!) Our paed swabbed his ears and said he had Pneumococcus and also Strep in his ears and the antibiotics he was one wouldnt touch the infections! His immunity was really low. He had a couple of booster shots from the Drs and hes been so much better. (cant remember off hand which but your Dr will tell you) He has just had an infection which we 'blasted' with oral antibiotics and also eye drops in his ear-ciproflox.(New dr hadnt heard of it but it works!) and he seems ok. The last one that we treated was in July so we have had a couple of months respite instead of one continuous infection. Hope it helps. x