Salt etc. Starlight's Baby DS. Please help.

[StarlightMcKenzie]

For those that know a bit about my story please help me not to get all shakey over this.

Baby DS has no ASD. Confident and certain in that. However, he does have articulation issues and lack of words. Yes, he is 17 months and I know this.

I also know he has posterior tongue tie (confirmed by LLL tongue-tie specialist but denied by GP and HV) and grade 4 upper lip tie (not denied but significance denied).

I have no idea what, if anything I need to be doing. I think probably I need to build a case for surgery. Possibly I need evidence from SALT.

Now I have called HV. NN phoned me back wanting to visit. I ask why she says to observe and give tips. I say no tips thanks, what next? She says wait until 2.5 development check. I said no thanks to waiting, what next? She said HV come to house to do missing 1 year developmental check. I said what for? She said because they like to do them.

So I asked how that would address issue and she said it would record my concerns but then wait and see until 2.5 developmental check. I asked why we'd have to wait and got the response that they like to do it just before preschool so they are where they need to be to learn.

I asked if she believed no learning could occur before preschool then?

We ended it with her giving up and telling me that a HV would call me tomorrow to book an appointment.

I am not happy with the challenging nature of my side of the phone call. I don't know how to stop it. I didn't attend the 1 year check because I hate their service for the way they have repeatedly let us down, even in baby Ds' early days, forgetting the whole thing with Ds.

There is no self-referral to SALT, though I'm not sure if that would be the right place anyway.

Any kicking into shape will be welcome as well as flowers. I finished the phone all in tears.

I don't blame you. My hv has been time in holding my middle ds back from our dx this week after telling her my concerns at 18 months.

My 20 month baby was delayed exactly the same way. I asked her for help again. She repeated the same old tripe again. I pointed out she was wrong last time. She said sorry you don't like what I'm telling you. I then ( not like me at all - I'm placid and shy ) asked what was the f ing point of her. She said she could NOT refer ds to multidisplinary until he was past two. But she did.

Yes I made myself look like a looney Chav with a foul mouth. Do I care? Nope. The baby has been seen by a neuro disability pead who has reffered to physio, portage, eye test, hearing test, ot and genetics.

So he needed to see the pead. He very likely also has dyspraxia. I was right. As I always have been about my kids.

If I had to upset everyone or even sleep with someone right now I think I would. I really no longer give a damn.

My baby was 17 months at referral. She broke the rule to get him seen. So what? It's a stupid rule it's not a favour

Aw, sorry 2boys, I didn't realise you had more rubbish to deal with.

I just phoned SALT people and asked if they have ever seen a 17 month old baby which they said they had. This is so when they tell me they can't refer until 2.5 I can tell them to check/get training/stop lying.

They confirmed it was early but appropriate to be seen by them but I needed a referral.

Not sure I can do HV in the home thing though.

star, is your GP any good? we have completely sidelines the HVs (massive let down with Dd1, would not touch them with a barge pole) and run everything via our GP.

Sorry Starlight - you were so helpful to me when my SA was refused - I was in tears of rage and despair then too. But you will do what we all do for our children - recover and prepare for plan for attack.

Oh star, I don't know I'll be much help... My ds is, what, 6 weeks younger than babystar? He has no discernible words, and I have just been wondering wen I am going to get around to doing something about it.

Oh bloody hell, I'm not sure I can do it all again (had an absolute nightmare getting dd1 SALT, and was lied to over and over).

I am reasonably confident no ASD - certainly not in dd1's league, possibility of strong traits etc. he too had tongue tie (separated, but late and not fully I suspect). Am already being told 'oh he's a boy, they are lazy'

Thanks. I felt positively murderous on the phone.

Have made an appointment with GP this week. Will go that way (hopefully). I know the drill. Plead for a referral, if not agreed put in writing yadda yadda yadda. I cannot have a numpty in my home. At least you GO to the GP.

Sorry you have worries too NBC.

I didn't want to do this all over again either new blue, ds 2 was practice for ds3 I'm not that mum anymore. I am the meaner more persistent version so this time it's going to be different.

Star that sounds like a plan. I have been told in the past all referrals have to go via my hv. If you get that just say "sorry I can't work with her after our history". I did not want to ever see my hv again, but I took down about 20 reports on ds2 to help her get it ( she didn't btw) in the end dh went down with me. No kidding she said "17 months is to young to refer, I will get the referral form" then filled it out!

IMO - You need a referral to a Plastics Specialist - preferably a Cleft one. Is there a Cleft team in your area. I would seek advice there as Cleft SALTs are better with articulation issues than regular SALTs.

DS1 was referred to the community paed at 18ms via a GP. I first became concerned at the lack of speech at 15months and then had to battle the utterly useless HV and several other GPs before anything was done. The 1 year check had picked nothing up at all.

The lack of speech wasn't half as worrying as the lack of comprehension, which I knew was a much bigger deal.

I don't think you'll have any problems getting a GP referral, especially if you mention a sibling with ASD.

DS2 has a moderate tongue tie and I was told to expect possible delayed speech. I was furious that no-one told me about the tie until it was too late to do anything about it that didn't involve a general anaesthetic.

Luckily that prediction turned out to be utterly false.

Starlight - you will see on the thread polter mentions that mawbroon gives me lots of good advice. I would recommend speaking to mawbroon if you think the posterior tongue tie could be causing your baby ds problems. Salt have been very, very slow to do any assessments for my ds regarding his tongue tie. It seems to be a difficult area to get help with especially when they are babies. Good luck

"I am not happy with the challenging nature of my side of the phone call. I don't know how to stop it."

It must be exhausting. I'm not patronising you at all, by the way. It really must be. The funny thing is that you don't come across like this at all in RL. You come across as very mild mannered, calm and quite...sanguine. Which leads me to think that you go into a fight/flight mode when you make these calls - perhaps (and it's only armchair psychology) you are so scarred from the trauma that you've been through in getting where you are, that you can't bear to miss even one opportunity to have a smoother experience.

Have you considered approaching it with an attitude of 'look, I know how your bureaucracy works. I know you've got steps to take in order. However, we both know that I've been there, done that and I can't do that again. I'll accept you coming to observe as long as you promise to refer if there is even the slightest thing out of the ordinary in my DS?'

That's what I kind of did with SS. I referred, was observed, knocked back. I waited a while. Re-referred, accepted observation then said 'I'll say whatever it takes to get support. You've seen DD1. She is not "a happy child who likes adult attention." Do NOT do to me what your colleague did last time.' She was assigned to the Disability team.

Some, but not all local children centres in London have weekly/fortnightly SALT onsite sessions where parents can raise concerns and get referrals. Worth looking to see if yours does, if not I can pm you a couple from my old area.

The children's centre route is the one a friend took when the GP said the whopping great big hole in her baby's upper pallete wasn't a problem (he couldn't feed ffs!). He was booked in for an op within a fortnight, and the hospital had strong words on her behalf with the GP & HV.

The other thing would be to book your kid for a once a week session at an "official" Mum and baby group and get the group organiser to contact your GP on your behalf. Mum's word means sod all, whereas a "professionals" (even that of a 17 year old on work experience) is normally taken as gospel. Or you could get your husband to do the next GP appointment, as again men are allowed to be rational whereas mothers are just neurotic.

Do follow up with a written record, as of course that commits her to agreeing that she thinks no learning below nursery age is relevant for speech. Seeing that in writing may be the kick up the arse she needs to make a flipping referral.

Avoid, avoid phone calls with muppets. You know the routine - "never make a phonecall when an email will do". It's not just for evidence, it's to retain your sanity.

What about the specialist you seen that diagnosed the tongue tie , you mentioned , have you still got his name and number that you could ask him to refer your son on to the appropriate department . It's always worth a chance , say to him that you had few issue with things in past , no details , just that your health visitor and you don't agree on things . He may know someone to refer your son too . BUT can be a long way round getting a straight referral .
Or try get gp that locum at your practice , they sometimes don't know history so will refer straight away. Only things I can think that might help . Sorry your having more anguish .
My mum when she was alive use to say ( nobody ever told you life would be easy , you just got to fix each problem as they happen) sometime never true words said.

Thanks everyone.

The LLL person runs a clinic but can't refer. She suggested GP but warned me that TT is never taken seriously by anyone really and if they can even see it I'll still be told that no referral until it actually posing a problem and not speaking at 17 months could be just due to being slow.

There is also a problem with breastfeeding but no-one cares about that at 17 months either because he eats Shepherds Pie just fine.

I went to the HV service at 6months, to their breastfeeding expert and she told me that she had no idea what to do about tongue tie and tried to encourage me to seek advice from her on sleep issues and PND. The student observing followed me out into the street and apologised on behalf of the expert and told me of a private tongue tie snipper, so at least I was heartened to see some talent coming through.

We couldn't afford to do anything then.

The HVs here haven't been anything worse than incompetent and to be fair, in the old place where evil prevailed one HV in particular was my saviour.

Anyhow. I have a GP appointment. DS is behind in his jabs though DH have agreed to next lot so perhaps I can make a deal, referral for jab!?

Can you drop into drop in services in a different PCT then?

Bloody hell with feeding difficulties he could have a submucous cleft palate which isn't obvious.

'you are so scarred from the trauma that you've been through in getting where you are, that you can't bear to miss even one opportunity to have a smoother experience.'

I think that is it Lougle. I have lost patience with some services in the same way that people lose patience with IT support services that ask them if the computer is plugged in and then to reboot, - when they are themselves Network Engineers.

I'm frustrated before I pick up the phone knowing that I'll have to go through a slow trouble-shooting process and follow advice such as singing nursery rhymes, read books, talk to him etc. Which isn't BAD advice, it's just bad advice to me. And I'm cross at how ineffectual that kind of service was before, and know it will be just as ineffectual now, but I suppose I know in my heart that you can't just insist on a referral because you want one. These things need to be ruled out and the fastest way is probably to go along with it all politely, openly and without letting it get silly, with some patience.

Sally. Interesting that you say that because the breastfeeding expert suggested he might have something like that but that because of my persistent feeding through months of pain and poor latch, his pallet could well have widened during his development.

But I have no idea really what it is, so off to google......

Lougle I had to look up 'sanguine'

Palate issues account for feeding and speech difficulties, and a tongue/lip tie is often linked. DD had a wide cleft hard and soft palate and a tongue tie. This is why I think its a good idea to go see a Cleft team, as if there aren't cleft issues they will still be able to surgical sort out the tie and also to help with specialist SALT.

Ta, but how on earth would I convince my GP to give me THAT referral?