Help - extreme frustration & delayed speech

[babylily]

hi,
don't know if my title means me or her...
DD2 (2yr 6 mnth) has delayed speech and has just started therapy. We have been signing since she was tiny (but she only uses a couple of signs) and she has around 5 words at any given time (she seems to lose words)
she suffers from extreme and violent tantrums and always has done and we think it is caused by frustration at her inability to communicate her needs. i cannot connect with her at all when she is screaming - although we have been told she is not on the autistic spectrum when she is in a screaming or grunting fit she won't make eye contact or respond to anything(today she just whined all day...and i mean all day but some days she can be completely silent)
SALT sent us to GP for hearing test (DD dribbles constantly and always heavily breathes through her mouth) and also to check out her fixations on certain things and routines...GP said would note it on file but can see no need for anything to be done on either...and hearing test is un-necessary despite her also having a pretty clear speech impediment when pronouncing the few words she does have.
Feel horrendous because i took redundancy in order to spend time with DD and now i am desperate for some time off from her!
anyone with any experience of this please help! SALT suggested she needs time out from me too - as time at nursery/pre-school on her own may encourage her to communicate... but nursery is 45 a day and we can't get her into preschool for another year due to shortage in spaces.
sure i will feel better just to have put this down. feel so guilty at being unhappy when she really can't help being the way she is.

Go back to GP and insist they refer you to a developmental pediatrician - this will rule out or highlight any other reasons for delay (these appointments can take 6 months to get). Tell them you are not happy and you also want her to have the hearing test beforehand. If you are in a large practice, see another doctor. Don't waste anymore time worrying yourself sick about this. Get some help for your little girl and start enjoying her

sorry you are going through such a stressful time. DS had delayed speech - and the nursery didn't help his speech at all really, it helped his socialisation in terms of sitting with others at snack time but that was about it! some cities have a surestart pilot scheme where kids who come under certain criteria (including speech delay) can have free nursery sessions from 2, might be worth checking with your HV if the scheme applies in your area.

In terms of the hearing - I would phone up the audiology department and ask if referral has to come from GP, they may be fine to do the hearing test just on basis that you want it or they may take referral from SALT or HV. GP is really being unreasonable, as having a hearing test is a routine check in kids with speech problems, to rule out there being an obvious physical cause for the speech problem!

thanks for this. We see SLT next week again -and i will pursue the nursery issue and the hearing test. HV suggested she was possibly high functioning aspergers - but i think she was looking for an explanation as she doesn't really display any signs of an ASD.
sometimes she is just wonderful. she loves stories, she adores her babies, but most of the time she just breaks my heart because i just can't help her be happy!

I'm wondering why the GP thought hearing test unnecessary. Glue ear can cause fluctuating hearing loss--audiology department can test for it quickly and painlessly. Have a google, see what you think.

Hi babylily. My DS has GDD and his speech is very delayed. He had very limited speech at that age. At 2.5 he had about 20 words and a few signs.
What we used for a while to help him were pictures. I took pictures of foods he likes, the park, his therapist, his bed, water and milk, swimming pool, his horse riding, etc, etc.
Put them on a board and would ask him to point to what he wanted if I didn't understand him (it also helped with getting him to make choices). It really helped.

Also, at that age I didn't really realise how much trouble he had with sensory integration. Maybe your DD is not frustrated just because of speech but maybe she is under/over sensitive to something (movement, sound, touch,etc) and is either craving more or wanted less of something. Would be worth keeping and eye on that.

hi babylilly

persist with your gp , it took me long time to convice mine ,maybe your hv could refer you to community paedtrician then from there ask refer to devlopment paed, way I had to do it.

and don`t give up on the signing I was siging for 18 months to my DS with no response then last few months its just clicked he now has a dozen signs he will use

Babylily - I could have written that OP 12 months ago.

Go to a diffent GP and ask them to refer you to ENT, not audiology (ENT will send you there anyway). Your daughter is displaying classic glue ear symptoms as did mine but nothing was picked up by audiology or GPs or even the bloody paediatrician! We asked the GP to refer us to Manchester Childrens Hospital to see an ENT consultant we had heard on Radio 4 (the GP thought we were mad!) - it was the first time we had heard someone had describing DD1's symptoms. Within 5 mins of meeting DD1 he decided she needed grommets and adenoidectomy. She had them in September and is a much happier little girl. The violent tantrums have reduced, so has the head-banging and her speech has improved.

Have a look at the Case Notes programme on the Radio 4 website. You can pull up a transcript of old editions and search for Glue Ear.

And remember you can now self-refer to consultants, you don't need the paeds/GPs to do it for you.

Also I wondered if your pre-school has no places due to their ratios. If they got a 1:1 support worker (we initially got ours through the pre-school learning alliance)for your DD then they might be able to take her. Maybe HV could talk to them for you?

Agree with the others go back to the GP ( or write to him/her) listing your ( and salt)concerns and ask ( demand nicely) for a referral. My son was very like yours as a rising 3 year old (including the loosing words thing and dribbling). It was a difficult time for me too so I empathise with needing a break! I now feel sad that we were ignored when he was younger because we missed out on all early support and I feel it is my fault for not being pushier.
Ps you may be able to self refer a hearing test.

Hi, i have a dd2 simalar to yours,my dd is 3 next month and only says 2 words (not clearly), she is being assesed for Autism after she was refered by our GP a year ago. I would advice to push your gp to refer her.
At the moment dd is seeing a SALT one a week through the SN nursery which she goes to, she saw the NHS salt once who told us there wasn't much she could do with dd and she managed to get dd a place at the nursery. Since being at the nursery dd has learnt to communicate using PECS (picture exchange communication) and now follows basic commands (which she never used to do).

Dd also does the heavy breathing and dribbles.

hi to all. I am truly grateful for all your replies. I feel a lot more determined to try and do the best for her now (i had been wondering if perhaps i was making something from nothing with her and that it is all just me not being patient or supportive enough of her). i will definitely follow up on glue ear
thank you all again

Let us know how you get on. BTW audiology did manage to diagnose DD's glue ear--maybe insist on seeing the doctor.