Support thread for speech and laguage delay toddlers...

[Orangeflower7]

Hi, I have a little boy of 2.5 and we have just today had our first speech and language referral appointment as he is not saying many words yet. I thought maybe other parents might be in the same position and would like to share experiences for support?

It took a few weeks for the appointment, which we were referred to by the health visitor. The therapist told us he has a moderate language delay and has given us ideas of some signs to use with him, she has advised us to keep language clear and simple and we will get a place at a toddler group run by speech and language therapists who will observe and support us. Not sure how long that will take as they only have 6 children in a group but there is an option we can go to the next town if necessary. He also had his hearing tested by the hospital audiologist last week and they said his hearing was fine.

Today I made a pest of my self. I rang the HV clinic and HV wasn't there so rang the GP and the HV just happened to be there. Told me I just had to 'sit tight' about my SLT and hearing referrals. I can tell he thinks I am being pushy and I hate to be a pain but am really impatient to get DD assesseed.

Spent the weekend with a 1.8 year old who could speak better than she can. I was trying not to get upset all weekend and just hoping she would suddenly just say something.

I am trying to chill out about it all but it is so hard.

We didn't have a 2 year check with DD but we did 3 years earlier with DS.

wobbly better to be a "pushy" parent than not.

tabitha8 if it helps which it probably doesn't pretty much all of my friend with boys say that they weren't potty trained before 3.

I agree, push all you can. Who else will do that for our LOs?

Keep pushing, if HV doesn't respond ask again AND ask the GP. If that doesn't work wait a couple of week and try to see another GP in the practice and so on.

It took three GP appointments to get a referral to a paed, and my reading the NICE guideline on glue ear and throwing 'policy' at the GP to get to an ENT (ear nose throat) consultant. Personally I find it all rather wearing, but can also say once you are in the loop you are in it (though again I seem to chase appointments and reports more than you should really have to).

CJN We are looking into glue ear. Did you start with GP who said it was a negative for glue ear, but you just weren't sure, so wanted to see an ENT? I'm not completely sure how glue ear is diagnosed and by whom. We are off to see GP next week. Thanks!

Glue ear can be diagnosed by ENT or audiology.

We started with HV being concerned about speech / language development and refering to audiology for hearing test. We didn't want to wait and went private for 1st test which showed no glue ear. However, then an NHS test came and it showed moderate hearing loss and flat tympanogram (that shows there's fluid in the ear). Then because of family history we asked the GP to refer us to an ENT. He said no, then said no again. So I went to another GP quoting NICE guideline and they referred us. Between referral and getting the appt we had two more hearing tests that showed moderate hearing loss and glue ear, so now we are waiting for grommets and adnoidectomy. This whole process will have taken 9 months, during which we have also been on a wait list for NHS SALT which is going to take a year from when problem was identified (we're in SE London, our PCT is c* on SALT most aren't this bad).

I could throttle the HV. He promised audiology referral and SLT referral. I rang up to find out if the dept had received the referral and when we could expect an appointment.
They hadn't received anything. Think we will have to go private for this.

Our HV "apparently" referred to portage and salt, but neither had heard a thing. Good job I chased it or we'd still be waiting. But that was the same HV that **ed up dd's newborn hearing tests, and why we're in the boat we are now. Throttle does get close to what I'd like to do to HV.
I refuse to deal with HVs now.

I'm not trying to make anyone feel more demoralised here, but another thing worth doing is keeping copies of all documents. Chase for a report from every test, consultant appointment, assessment etc. Open files for each specialism. You'd be amazed at how much doesn't get communicated. I think I only get about half the reports I'm meant to without chasing, and often other healthcare professionals who should be in the loop aren't.

Navigating the NHS can be mighty tricky, and their communication systems are so complex lots gets lost. However, I feel I mustn't grumble too much as at least we have free public health which so many in the world don't...

Hum de dum, is it wine O'clock yet??

for you CJN. I keep all copies of everything and every 3 months I take it to family doctor just to check he is in the loop.

I have found out though that if I want something done or chased I moan to let audiologist know. They are above and beyond. Iykwim.

Need to upside my folder soon.

Thanks for all the tips! Keep them coming, pleeeese.
CJN Staggering that your GP refused the referral. .
I think it ought always to be wine o'clock on this thread.

A hearing test only tests for hearing sounds, Otitis Media with Effusion (Glue Ear) can cause a temporary Hearing Impairment,and as an AFTER effect, it can cause acquired Auditory Processing Disorder (APD) APD is a listening disability, or not being able to process all the sounds that you hear. This has implications for learning to speak, as we learn to speak by processing the speech of our parents and peers, and by re-processing our own imitation of the sounds of speech.
According to the UK Medical Research Council 10% of children have some degree of APD including those who may have had Glue Ear.
Speech and Language Pathologists, Audiologists, and Peadiatricians should be aware of APD, and audiologists diagnose for APD.

Our audiologist wants to test for Audio neuropathy spectrum disorder too. (audio nerve doesn't relay what it hears properly, so affected DCs can't process what they hear properly, so don't know what they're supposed to be listening to in a noisy environment)

Verahaspurpletwuntypants

There are variations on names regarding Audio neuropathy spectrum disorder
ranging from Auditory Neuropathy, Auditory Neuropathy Syndrome Disorder, and
auditory neuropathy spectrum disorder (ANSD). I have a Auditory Neuropathy Spectrum Disorder (ANSD) research paper collection which may help explain some of the issues.

APD is a listening disability, and having problems with Dichotic is also a problem for those who have APD. We have problems with low levels of background noise (Pink Sound or cafeteria levels of background noise) and processing what others may say.

Oh thank you dolfrog. I will take a look at that.

Crumbs. Never heard of APD, but that's definitely me! I was a late talker, but talked without any therapy (it probably wasn't available back then).
I'll mention this to doc when we go next week. Thanks for posting all that information.

Tabitha8

There is more APD related information on the Auditory Processing Disorder in the UK (APDUK) web site.
APD has only been officially recognised in the UK since 2004, although they have known about APD in the USA for almost 40 years now.
There is an adult APD forum the OldAPDs which over 10 years old and has about 600 members, many of whom, like me, only discovered their own APD when trying to get help for their children
And if you really feel like doing some research there is the CiteUlike Group: Audiology and Auditory Processing Disorder - library 380 articles

hello just marking spot so I can come and catch up later today - hope everyone is well.

Thanks, Dolfrog. This is a very complicated one, isn't it? DS does, in my opinion, hear and understand very well. He just can't reproduce any words and doesn't even appear to be trying to. Onwards and upwards we all go.

Tabitha8

One of the problems that those who have APD have, is not being able to process the gaps between sounds, this includes the gaps between sounds that can make up a word, or the gaps between words in rapid speech.

We learn to speak by being able to say they whole sound of a word, not by adding the sounds which can make up a word together. The same applies to adults who have to hear the sound of a new word, we can not sound out words phonetically. So we can not use phonics, and have problems following conversations and following multiple verbal instructions.
we prefer pictures, diagram, charts, mind maps all forms of visual information instead of verbal instruction and verbal communication.

You could have a look at my own web site which has been designed to be me friendly All of our 3 DS have some degree of APD

Having done a lot of reading on APD, my hearing issue is all to do with not being able to follow a conversation when in a busy environment (even a tea shop). So, if DS has a similar issue, as he spends most of his day with me, he really ought to be talking by now. Saying a few words at least.
Thank goodness for Makaton and Mr Tumble.

Tabitha8

Having problems with background noise, pink sound, or cafeteria levels of background noise is one part of APD, about having problems of Dichotic Listening, which is how APD was first identified back in the 1950s / 1960s. ( people have problems processing what was being said in discos, and then the reduced the levels of background noise and some still could not process all that they heard. when we first began researching APD back in 1998 / 2000 the researchers were talking about 4 may be 5 subtypes of APD, the leading researchers are no talking about 12 / 13 subtypes of APD as their understanding of the issues increases.

Otitis Media with Effusion (Glue Ear) could be complicating issues and causing a delay in speech development have a look at my Pubmed Otitis Media research paper collection

We have now ruled out glue ear, so that's a start.
Hmm. APD sounds as though it isn't easy to diagnose in a child.

Hi there,
I'm new and have tried to read as much of this thread as possible (or at least what dd would allow me to). My 21 month dd is saying very little and dp and I are getting concerned. My hv referred her for audiology tests which for the most part came back fine (she refused to cooperate with certain parts because she was frightened and the doctor said that was fine as she wasn't yet two).
She can say 'da da', 'oh look', hi ya', and that has pretty much been it for months . We read to her, talk to her all of the time, go through flash cards and her 10 yr old sister doesn't stop talking.
She points to things alot and in every other way is coming along great and doing new things every week, she just will not say any more words. She has never called me 'ma ma' or tried to attempt her sisters name.
Should we wait until shes two or pester the hv for speech therapy referral?
We would be grateful for any advice.