Confused about referral to paed!

[WillWeBeOk]

Hi, thanks to everyone who helped me out on my last thread. My 8 month daughter has been showing some worrying signs that could be autism and my health visitor agreed to refer me to a paediatrician (although she as good as said that she was only doing it because she thought I was totally neurotic).

So the following letter has arrived to me:
"I have received a letter from your health visitor. I should be grateful if you would telephone the surgery to see me, dr x, routinely. It is in your best interest that you see the doctor who arranged the referral for continuity of care."

I'm confused! Dr x is one of the GPs at our local surgery, I've see him several times regarding minor health problems in me or my daughter. Is he in fact the "paediatrician" that we've been referred to? I guess I was expecting an appointment with someone who would look at dd specifically in regard to asd traits. Whereas I've been to the docs a couple of times since I started having concerns 6 weeks ago and each time they have given her 30 seconds, declared she was fine as she gave them a bit of eye contact, and then tried to send me away with a diagnosis of post natal depression.

So with this referral, do you think it will be a longer and more in depth appointment? Will they do any kind of tests specific to asd, eg checking her joint attention?

Thanks to anyone who can throw some light on what to expect!

8 mos?

They will be assessing for developmental delay, not asd. The doc will refer to child development specialist (paed) if he deems necessary.

What delays does your 8 month old have?

Thanks, I know she is very young so I guess they will not be able to do anything except for monitor her and keep her in the system.

It's not delays as such, rather things that she used to be able to do at age 4/5/6 months that we have noticed her doing a lot less. Her eye contact is very poor now, especially close up, and she no longer responds to her name or very often to our voices at all, although she is very alert to background noise and things going on in other rooms! Not interesterd in other babies and used to really enjoy looking at herself in the mirror but now ignores it. Was very smiley and flirty but now has quite a deadpan expression a lot of the time. Doesnt seem to recognise or acknowledge me a lot of the time. This is the baby who a ciu

Tbh I am not sure a health visitor can refer to a pead. They are more likely to have referred you to the GP who will then decide whether to refer to a developmental pead.

A couple of months ago would come off the breast to smile and giggle up at me. Also, she shows no response to tone of voice now like she use to and never imitates sounds, expressions or actions although she did as a young baby. Doesn't like cuddles, even though she spent her first few months refusing to be put down. And doesn't seem bothered if I'm in he room or not, no kind of separation anxiety or any reaction to seing me again if I've been away for a few hours.

Any few of these things by themselves could be ex

Explained away but all together it makes quite a character change that Even some of my friends have noticed and does make her stand out from the other babies of her age.

Our HV referred ds to a developmental paed, after doing a Schedule of Growing Skills assessment at 7 months.

But the paed was looking at things in very general terms, due to delays, rather than a specific worry, maybe hv wants to go through gp because of your concerns wrt asd.

sorry, not much help!

Just to back up what cansu has said. My DS had a very obvious physical problem and needed refering to the paeds. The HV refered us first to the GP then he refered us on to the paeds (then the eye man, then the eye plastic surgeon). So HV cannot refer straight to paeds.

Maybe it depends on area, but my HV certainly referred direct to Paeds. I have never seen GP re dd2's development, has been referred to developmental Paeds twice. Saying that, though, perhaps they can't refer directly a

well with ds it was definitely a referral from hv to paed and at less than 12 months. Referrals for things like genetics have to go through gp, but not initial paed referral.

Ok so I'm not sure whether this doctor is "the paed" or whether he will refer us further. I just want to do the right thing for my little girl, things have become so different with her and people say you shouldn't ignore a regression. Also that the earlier you can "intervene" with autism, the better the outcome for the child is what I've heard. But something tells me my concerns are going to be dismissed. Dd is very alert and is meeting all her milestones physically so anyone not in the know would say that here's nothing to worry about as she doesn't fit the image of a very passive baby locked into her own autistic world. However other than autism I cannot see what would cause her to lose her social and emoti

Emotional skills in this way.
Sorry for multiple posts, phone keeps clicking on done before I am ready to post!

Well, dd2 had the same symptoms, but hers were caused by brain damage.

Try not to get locked into dx an 8mo with autism - concentrate on the regression as a symptom that needs urgent referral - there are plenty of other conditions that can cause regression of all sorts, and I would be concentrating on ruling them out as fast as possible.

I would be expecting a raft of blood tests, and a brain MRI. I wouldn't be focusing on autism.(that can come later when the really scary stuff has been ruled out). Plenty more nasties out there that I would want to know weren't the culprit, if the regression has been as sudden and long term as you suggest.

Well, dd2 had the same symptoms, but hers were caused by brain damage.

Try not to get locked into dx an 8mo with autism - concentrate on the regression as a symptom that needs urgent referral - there are plenty of other conditions that can cause regression of all sorts, and I would be concentrating on ruling them out as fast as possible.

I would be expecting a raft of blood tests, and a brain MRI. I wouldn't be focusing on autism.(that can come later when the really scary stuff has been ruled out). Plenty more nasties out there that I would want to know weren't the culprit, if the regression has been as sudden and long term as you suggest.

Agree with madwoman... You can say regression, loss of acquired skills, not reliably responding to what she sees and hears any more... that'll worry them. The reason for the GP appt is probably because the local NHS wont fund health visitor referrals unless he has rubber-stamped them.

Ok, the summary above is a bit over-simplified / sensationalised, plus omits everything which is fine, but it's basically true and it'll get the referral (probably as 'urgent' as well ). For the doctor, the issue right now is to make sure that her brain is ok, and that she doesn't have some odd disease a bit like the ones the heel prick test checks for. So it wouldn't be a big surprise for them to want blood tests, or MRI scan or EEG tests. After that it's tests for vision and hearing, and then the 'developmental delay' check-ups.

Discussion about any ASD signs comes after that lot. Most professionals would consider you nuts talking for about autism below 18-24 months (even though I had some concerns about ds1 well before 6 weeks, as did many posters here)

I know, I am also scared that it could be brain damage as she was developing normally during her first months. It's the lack of recognition of me ( she totally blanks me when she wakes up, when I'm doing her nappy and getting her dressed etc) and the reduced reaponsiveness that worry me the most. She has definitely changed. It is devastating.

When is your appt with the gp?

Tbh I wouldn't waste time fussing over who the hv referred you to. You just need to get your appt with the gp and get on with subsequent referrals.

As a matter of interest, if you were that worried about the dd, why did you not just make an appt anyway? (Tis might have been covered on the other thread - didn't see it)

Hi, I have been to the GPs twice since i started noticing things in early December but each time they tried to tell me that she was reacting to my anxiety and that I needed to go on antidepressants because they thought that I had Pnd. But I've been trying to tell them it's the other way round - I became anxious as a result of the regressions I was seeing, I was not anxious or depressed before.

Each time they took a quick look at her and said she was fine because she seemed so alert. I can't explain it exactly, she is very alert but to the wrong things iykwim, eg fascinated by objects but ignores people, head whips round to see what the action is going on across the room but no interest in joining in with a game with the person whose lap she's on. Examines the corner of the room with great interest, babbling to it, but won't pay any attention to a person calling her name or talking to her.

Sorry I don't know your story, you said your daughter shows similar symptoms. When did you start picking up on them and how did you get the professionals to listen?

Oh, she's always had brain damage, but as a result we've hung out with lots of other kids with disabilities, some of whom have have had similar regressions etc. the thing about having a child or two with a disability means you get to hang out with loads of other kids who are not nt for one reason or another. So we've been hanging out with different kids for nearly ten years now.

My nt babies have always looked at the corners of rooms etc by the way - I rationalize it as being part of sight development - that they can see the line/s where the walls meet but not well enough to focus entirely, or to understand what it is. Mine also used to stare at my hairline, not my face - so just where the line of colour change was between my skin and hair. I used to fret about it, but I think that it's quite normal.

Dd2 didn't smile or have any facial expression, so we didn't have any idea whether she was learning disabled or whatever until she started to speak, and we were told she wouldn't walk or talk (both completely wrong).

But it's not the same thing. Dd2 doesn't have asd - although I have, at various times along the way, wondered if she would get a secondary label.

Regression is different.

Is this the same doc?

It's definitely a doc I've seen recently, I just can't remember if he was one of the ones I saw about my autism concerns or whether i saw him ambit previously about other concerns (she has food allergies), in our surgery you seem to get a different doctor at each appointment.

Dd will make happy expressions at times - she really enjoys propping herself upright eg on the rails of her cot and has a good chortle when playing rough and tumble games. She does pay attention to people when there is something else involved, like glasses, toothbrush, food and drink - then she can't keep her eyes off you and is very vocal. But she won't do social smiling anymore and you could repeat her name innamvariety of tones and pitches and it would be like you weren't there.

I just don't know what's going on. I had dental work done while breastfeeding having been assured that it was safe but it seems like she has changed since then (oct). When she was born, we had to have an emergency c-section due to placental abruption so who knows how she was affected while she was "in distress", actually she was a few weeks early and I never went into labour. Also my sis in law has epilepsy and my nephew is being monitors for asd so any of these factors could be relevant.

Docs appointment will be on mon I hope, the letter which I got on fri afternoon said I need to ring and book.

That's fantastic your daughter walked and talked proving the doctors wrong! You must be pretty proud.

Well, they will double check hearing, vision etc as a basic. Then move onto developmental stuff and if they see fit, bloods/ MRI as suggested.

I do think that you will struggle to get any referrals on the basis of asd at this stage though - but if you have genuine concerns about regressions then they will check that out.

That said, the markers do seem to be quite 'soft', so they may well just adopt a wait and see... (Dd2 wasn't officially dx until 2, although her issues were identified at birth - so we had two years of 'wait and see' - even though she was awarded high rate dla at 6 mos, and had many med appts every week. There was no doubt she was disabled, but they weren't going to commit to a dx for two years, to see which delays caught up)

If you're worried and not up to simply insisting on referral, in the unlikely event regression isn't convincing them, also talk about concerns re epilepsy (which is very hard to spot in babies without putting a little electronic monitoring hat on them for half an hour)

And you can always agree it would be really lovely if they did the various tests and found nothing at all wrong and it truly is just you being in need of some happy pills.