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Has anyone else's child been 'signed off' by their pediatrician?

(29 Posts)
MumfordandDaughter Mon 08-Apr-13 14:45:38

My dd (5yo) was diagnosed with HFA around 18 months ago. A few weeks ago we got a letter inviting us to a recall/review with the pediatrician for today.

So this morning we went to the appointment. It lasted five minutes. It was the same pediatrician who was involved in the final assessment (the diagnostic one) yet she still asked 'has your dd been diagnosed by the team yet?'

She was quite embarrassed when i said yes and reminded her it was her who wrote the document.

Anyway, she asked very basic questions re DLA, her sleeping/eating habits, has she any friends etc.

Then she said that she's going to sign off my dd. There's nothing else to be done. She said i could keep her on the recall list if i wanted, to be seen again in another year, but that it would be pointless. However she pointed out that i could call her if i had any new issues.

Just wondering if this is normal? Will my dd never be reviewed again?

This may sound completely silly, but i can remember from her diagnosis day that the professionals told me there's a chance my dd may not fall under the criteria for autism anymore when she's older/an adult. This is rare, but it can happen. And this thought has always stuck with me.

So how will we ever know this if she doesn't get reviewed every year or so?

I just feel a bit shocked, and i'm not sure why. With all other conditions, you go to your doctor for occasional checkups, so why not with autism?

PolterGooseLaidAChocolateEgg Mon 08-Apr-13 15:22:05

Message withdrawn at poster's request.

LimboLil Mon 08-Apr-13 15:33:04

Yep, same here. Your child's autistic. Have a nice life. Bye bye.
Or words to that effect! To be fair I was given the ominous green folder with lots of info in it, like DLA etc but it was mostly stuff I have already ready on Mumsnet! I was still glad to get the diagnosis though, I had pretty much worked out that anything after that would be down to me. We have got OT referral too.

Crawling Mon 08-Apr-13 15:47:35

We got diagnosis from CAHMS we had one appointment and she was diagnosed and signed off then and there.

MumfordandDaughter Mon 08-Apr-13 16:05:06

Thanks everyone. It's just quite scary. If i ever had new issues with dd, this pediatrician would be the last person i'd call. She can't even remember diagnosing my dd and didn't seem to pay much interest in her except pointing out how much my dd likes to interrupt other people hmm

Your child was diagnosed after just one appointment, Crawling? That's really lucky (that sounds silly but i hope you know how i mean it).

We had 18 months of assessments and interviews before the official diagnosis. But the waiting lists for each thing were huge. hearing tests. Salt assessments, observing her in social environments etc. Very stressful. I'd have loved for it to be all done and dusted in one day. It must differ from area to area. I think as well it's because i started pursuing a diagnosis when she was so young (2). She was finally diagnosed at 3.5 years.

And now it's just me and her against the world it seems.

She apparently has an educational psychologist (but i've never met her), she has SALT once a week, but it's an outreach team from her specialist nurseryshe attended last year, so that's due to end before she goes into primary two this summer. No idea who i'd talk to if i wanted a proper chat about dd's ASD issues. Her Gp?

ouryve Mon 08-Apr-13 16:13:30

DS2's paediatrician wanted to sign him off, last year, after 3 years in her care. I said I didn't want this to happen, as he would be left with no services or support and he'd already demonstrated that he's capable of developing some pretty worrying behaviours. So, we're down to annual appointments.

ouryve Mon 08-Apr-13 16:17:01

And I've never spoken to our GPs about the boys' ASD or DS1's ADHD. I'm not even convinced it's even in their vocabulary.

SallyBear Mon 08-Apr-13 16:46:02

DD's paed retired. The hospital neglected to tell me that she had retired, but I knew that she was handing over her difficult cases to her replacement. The replacement decided to discharge her. After a very irate phone conversation he put her back on his books and then saw her. He agreed that she was indeed a complex case and will be on his patient list until she is 18.

It would be fair to say that he won't be trying that again with me. Oh and he is a chocolate teapot. I miss her old paed.

TheTimeTravellersWife Mon 08-Apr-13 19:36:21

Yep, signed off here too, despite DD having complex needs, i.e. more than one diagnosis.
DD is now under a specialist paediatric neurologist (she has microcephaly) but I miss having a paediatrician that has the "whole picture" of my child, rather than lots of different specialists.

EllenJanesthickerknickers Mon 08-Apr-13 19:40:58

DS was signed off at 5. TBH, he was autistic but had no medical needs. Social, behavioural and educational, yes, but no medical problems at that time. We are now back under the same paed due to suspected epilepsy, however, 8 years later.

TheTimeTravellersWife Mon 08-Apr-13 19:42:34

Ellen, we are seeing the paediatric neurologist for suspected epilepsy too, but still not back under the developmental paediatrician.

Ineedmorepatience Mon 08-Apr-13 19:43:55

Yep happened to us too, Dd3 was diagnosed by CAMHS, we had one appointment after the diagnosis where we were given a leaflet about a course for parents of children with ASD and then she was discharged.

She hasnt been seen by a paediatrician since she was 8 and she is 10.5 now, she was also discharged by SALT, OT, podiatry and Physiohmm

EllenJanesthickerknickers Mon 08-Apr-13 19:44:40

Timetravellers, My DS's paed's specialisms are neurodisability (including ASD) and epilepsy, by chance.

Crawling Mon 08-Apr-13 20:16:00

Thanks I know it was lucky dd spent the entire appointment head butting the wall and hummimng. Everytime he tried to talk to her she head butted faster and hummed louder he couldnt get her to look at him at all.

AgnesDiPesto Mon 08-Apr-13 21:31:10

We asked to stop the annual meetings they were pointless and the paed knew nothing about autism and ds has no medical needs.
You can be referred back if you need to
We have a huge diagnosis backlog here so I felt it was better for the paed to be able to see those on the waiting list than have a pointless discussion with us every year.
We have got GP to refer when necessary eg we have just asked for referral to a specialist dentist service. DS also gets his eyes tested at hospital. So if there is anything like that you could ask to be referred on before being discharged.
School can also refer eg to OT etc

emmetbrown Mon 08-Apr-13 22:35:54

Agnes we are the same as you. It was us who felt the paed knew next to nothing & wasn't doing anything useful. She liked to measure his head a lot hmm . If we do have any medical issues our Gp is pretty good & does home visits for us too. We also felt we were left high & dry after the dx.

devilinside Mon 08-Apr-13 23:01:20

Yes, we were signed off too, after a second appointment

Nerfmother Mon 08-Apr-13 23:09:53

Yep signed off here. Stupidly thought I was stepping into a bright new world of support services. Erm....
Zilch. One lovely overworked charity for advice and a weekly coffee morning to compare notes. Referred to camhs and still waiting for appointment due to weird habits - god knows what I'd do if he became really in need of urgent support - a and e?

doozie1 Mon 08-Apr-13 23:19:39

Hi there
This is quite normal practice and as your were advised you can be kept on the recall list. They said this to me for my son(was diagnosed asd in 2005) We see him once a year but if I have any issues in between appts I contact his secretary who then gives me an appt.

Paigesunshine Tue 09-Apr-13 20:35:24

Hi there
New to mums net. My son is 8 years old we were told Jan 2012 he suffers from ASD and was seen again in August 2012 and signed off. You say there can be follow up appointments how can I apply for this? They say go to support groups which I do attend when I can but it is difficult, they also advised me to do my own research which God only knows how many pages you read and still sometimes you feel you are no further in truly knowing all there is to really know and understand. Each month that goes past you are faced with another problem to try solve and help him understand why and what. So how do I get to still see a doctor as my GP does not want to really know I need a specialist. Help can someone tell me.

dontknowwhat2callmyself Tue 09-Apr-13 21:26:52

Paige - if you phone your DS's paediatrian's office/secretary they should be able to send you an appointment for a follow up.

dontknowwhat2callmyself Tue 09-Apr-13 21:37:12

Mumford - DD was diagnosed at 3.5 and we had two follow up appointments. Paed then suggested he sign us off which I was happy to do as there was nothing more he could say or do for us. At the time DD was under Physio, OT, SLT and had support at school so it did seem pointless having any more follow ups with Paed.

My DD sounds similar to yours in that Paed actually said on our second follow up that if he was seeing DD for the first time he would not be thinking of an ASD but he did have to take her history into account and he did think she had underlying issues. I did not press him to comment any further but if I feel that if a few years down the line DD does not meet the ASD criteria and her issues are not impacting drastically on her life I may consider asking for a review.

Paigesunshine Wed 10-Apr-13 00:04:14

So you still ask for a follow up even if you have been signed off.
Brilliant thank you I will do that.
I read in the papers that there is a pill out that helps autism has anyone read about this?

TheTimeTravellersWife Wed 10-Apr-13 07:44:11

No ability to even recall. Need to go through GP and wait for a referral, so it as if DD had never been a patient of the paediatrician. Really not happy......

MumfordandDaughter Wed 10-Apr-13 08:42:52

thanks for everyone's replies.

So it seems it's quite commonplace to get signed off then if there are no other medical issues.

I really do feel as though i've been left high and dry though. It's so difficult to find any reliable info/books/films specific to high functioning autism in young girls (if anyone has any recommendations, please tell), and now i've been dismissed by the proffessional involved with dd.

So who/what do i turn to if i need advice or I'm confused about something?

To be honest, this part of Mumsnet is perhaps the most informative and helpful thing i've encountered since dd's diagnosis. I'm actually really lucky to have stumbled upon it. Don't feel quite as alone with it all now.

Paige, i've read a lot of controversial stuff/arguments about such pills. I'd definitely seek professional advice before embarking on that journey.

In my opinion though, i don't trust them at all. There might be some truth to a change in diet altering moods/personality, but i think that's the same for all children, not just those with ASD.

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