Is it normal to be recalled by the pediatrican 2 years after diagnosis?

[49CremeEggs]

Hi.

I've just posted this thread:

www.mumsnet.com/Talk/_chat/1689484-Can-someone-please-explain-this-letter-ive-just-received-in-the-post

After calling the doctors to find out what it's about, they said the pediatrican that diagnosed dd (HFA) almost two years ago, now wants to see her again.

But what does this have to do with the child health surveillance programme in school? Did the school nurse feel the need to refer dd, or is it normal to get called up again after diagnosis?

I was under the impression the pediatrcian didn't need to see us again. Once diagnosis was done, that would be that.

I'm worrying the school and/or school nurse has noticed something that warrants my dd being referred to the pediatrician.

My dd2 has a physical disability (Perthe's syndrome - it's a hip thing) that is now almost better and after her scan in 2 weeks she'll be discharged. But she will still be reviewed annually until the age of 18 an probably beyond, partly as she's part of a research project (we're happy to be part of this if it helps other people's dc not to have her problems) and because there's a potential chance of serious arthritis at an early age with it.

It's most likely just appropriate follow up. If someone had felt the need to re-refer your dd then you should have been informed. Things can change quite a bit, and we've been seen post diagnosis for review every 6 months. I know my dd2s problems are very different, but I think the procedures can be quite inflexible. I hope there's nothing worrying for you.

I think they do just review them. DS was reviewed a year after his diagnosis. Bit of a waste of time really. Conversation went

Paed: So ds is autistic
Me: er yes
Paed: Say in the report he has issues with XYZ
Me: er yes
Paed: says here we were going to refer you to the following services xxxx. Did that happen
Me: Yes, except we aren't receiving any speech therapy which the report said ds needed, we are having to pay a private SALT.
Paed: ok glad that's all been followed up sorry about the SALT, anyway I don't think we need to see him again, but will leave his file open so you can book an appointment in the future if you need to.

DD1 has 'squiffy brain' as her diagnosis and we see her paed every 3-6 months. It's stretching a bit now,and I cancelled our last appointment because I couldn't think of anything interesting to say.

DS1 is on paeds 'books' - which means that if she or we decide an appointment is needed, we just contact for a date. That system works fine for me as I don't have anything much I want to say to her, but if I ever needed a letter for LEA etc, I would be happier knowing that she was at the end of the phone.

That's great, thanks so much everyone.

I just don't understand why it came in a little pink perforated NHS letter, with the heading Child Health Surveillance programme - School.

I would have thought a review meeting would be sent in a normal letter from the pediatrician's office.

She didn't mention anything about a review meeting when dd was diagnosed, but it's good to know it's the norm.

Normal but not universal

We were. It was a useful appointment.

It meant she could check that education had actually implemented the therapy rec's from the original diagnositic appointment, (eg was DS getting the SALT he needed). For us DS has finally overcome being the physically undersized runt that being a failure to thrive babe left him, so we got some dietry advice as he no longer needs a super high fat regime. She was also able to take the opportunity to write to the PCT & SS to ask why we still haven't got the night time home safety equipment he needs, something I really appreciated.

On very rare occasions the original diagnosis may change, or it may become obvious that there's summat else going on (eg the child diagnosed at 3 with ASD but later on you find there's ADHD or hearing loss going on as well).
Having a pead in on the loop of what's going on from the families perspective can only be a good thing and I feel it's a sign of someone taking their job seriously and that can only benefit families (given peads unique ability to make relevant referrals).

So I'm all for a 2 year follow up, especially as some families get "lost" in the system and left to cope alone without any additional additional educational or theraputic support with sometimes disastrous results.

If a child has a statement then they have a little box to fill in on a form every so often, likewise they may be contacted by the DLA jobsworths. Most ASD kids don't need constant monitoring like those with some physical issues, so a check up 2 years after diagnosis if only so that if asked by official bodies the pead can confirm the child's disability/stop some kids falling through the net of support services.