How often do you see the child specialist?

[flipper]

We had a follow-up appt yesterday for C - 9 months after his diagnosis (it was supposed to be 6 months but they're very busy).

 

Apart from the slight concern that his notes had gone AWOL it went OK but at the end we were asked if we wanted another appointment or not. He asked if we'd rather just get in touch if we had any concerns (which we'd probably then have to wait months for the appt) or whether we wanted to come back in 12 months time.

 

We chose the 12 month option (which will probably be more like 18...), but it left us wondering whether we would essentially be left to our own devices unless we asked for help as we'd assumed that there would be regular monitoring of C to see if anything had changed.

 

(As it happens he thinks C is making good progress as he now reponds when called and is very sociable and quite chatty which he wasn't last year. We think this may be down to the GF diet, but we know they are very anti-that so didn't mention it).

 

How often do you see the CDC?

 

Phil

[allsetuk]

We had a follow-up appt yesterday for C - 9 months after his diagnosis (it was supposed to be 6 months but they're very busy).

 

Apart from the slight concern that his notes had gone AWOL it went OK but at the end we were asked if we wanted another appointment or not. He asked if we'd rather just get in touch if we had any concerns (which we'd probably then have to wait months for the appt) or whether we wanted to come back in 12 months time.

 

We chose the 12 month option (which will probably be more like 18...), but it left us wondering whether we would essentially be left to our own devices unless we asked for help as we'd assumed that there would be regular monitoring of C to see if anything had changed.

 

(As it happens he thinks C is making good progress as he now reponds when called and is very sociable and quite chatty which he wasn't last year. We think this may be down to the GF diet, but we know they are very anti-that so didn't mention it).

 

How often do you see the CDC?

 

Phil

[allsetuk]

my son was diagnosed in jan, he didnt recieve any follow up appointment until i rang and badgered them into giving me one, i couldnt beleive they had given me the news then left me to deal with it without any further information, they gave me a reading list of very technical books that i couldnt get my head around. I have since asked for another appointment and always raise loads of questions and never seem to get very far, its very fustrating

[jomica]

We went every six months between diagnosis (4.5 yrs) and age 10, then were discharged as there was "nothing more they could do for us" and we'd "need to go to CAMHS next".

 

Helpful, not!

[Lynden]

We were seen every 3 months in the year following diagnosis (in Scotland) and then every six months. Down here we were seen for our initial appt to get all our services in place, then three months later to see if we had any concerns. We dont have a follow up appointment but can give our Paed a call at any time to make an appointment if we have concerns. I'm fine with that as I dont see the point in disrupting Logans routine and taking him out of school for a routine appointment if we dont have any issues at that time.

 

Lynne x

[pearl]

Things havent changed much in the last 15 years then. When JP was dx'd I asked about follow up & was told theyd get in touch if they needed us for research

 

I was much less savvy then & just accepted it. All our help came through education & SALT.

[MichelleW]

With J at 3 he was only diagnosed with speech language and communication disorder. It was only because the special pre-school teacher agreed that he probably was autistic that I pushed for a 2nd opinion which was Aspergers at the age of 4 and a half. He was supposed to be seen again 9 months later I think, but paediatrician retired and the successor called me out of the blue when J was 6 and a half and changed the diagnosis to Autism as J was more severe than the children he usually saw And then that was it! I was told that the next time the paed would see us would be when J got worse and required medication!! But he did say I could contact him whenever I wanted.

 

With DS2, I'm going through the same - Severe speech disorder is the main concern so he was reviewed again today, less than 6 months after his initial assessment. However, it is no longer inappropriate to say he is dyspraxic. He now definitely has quote "motor planning disorder which is called Dyspraxia" but still not enough evidence to say whether ASD or not - but he will be reviewed regularly - probably until they decide that it is ASD then there is no more they can do!!

[mossgrove]

In theory our two Autistic boys each see the consultant or one of her registrars every six months (although it's often less than that in practice) and we have regular contact with CAMHS who have come out to see us on quite a few occasions.

 

I suspect we do reasonably well in terms of the services we get because we have two children on the spectrum.

 

Simon

[ellisisamazing]

Our appointment are every 3 months without fail!

 

The consultant actually comes into El's school and it works well as he's in an enviroment he loves and is comfortable in.

[mossgrove]

Our appointment are every 3 months without fail!

 

The consultant actually comes into El's school and it works well as he's in an enviroment he loves and is comfortable in.

 

 

It's quite possible we share the same consultant!

 

Simon

[krystaltps]

We waited 19 months for our follow-up appointment after diagnosis! I met the psych in November for an introductory chat, but she still hasn't seen C.

In terms of medical needs, C sees the paed every 6 months at school, but is to start getting checked out every three months by the nurse (because of his high blood pressure while at school). He sees the dietician every three months and he sees the orthoptist once a year. The OT visits in school about twice a year, as does the SALT.

So it's the psychologist that's the big let-down here and thats the one I think we really need, because the twinkles could do with some support as well.

[Karen A]

With J at 3 he was only diagnosed with speech language and communication disorder. It was only because the special pre-school teacher agreed that he probably was autistic that I pushed for a 2nd opinion which was Aspergers at the age of 4 and a half. He was supposed to be seen again 9 months later I think, but paediatrician retired and the successor called me out of the blue when J was 6 and a half and changed the diagnosis to Autism as J was more severe than the children he usually saw And then that was it! I was told that the next time the paed would see us would be when J got worse and required medication!! But he did say I could contact him whenever I wanted.

 

With DS2, I'm going through the same - Severe speech disorder is the main concern so he was reviewed again today, less than 6 months after his initial assessment. However, it is no longer inappropriate to say he is dyspraxic. He now definitely has quote "motor planning disorder which is called Dyspraxia" but still not enough evidence to say whether ASD or not - but he will be reviewed regularly - probably until they decide that it is ASD then there is no more they can do!!

 

 

Hi.Dyspraxia is the same as DCD [Developmental Coordination Disorder] you should be offered some input from OT re the DCD Dx even without the ASD diagnosis so do push for support if it would help.Karen.

[MichelleW]

"Hi.Dyspraxia is the same as DCD [Developmental Coordination Disorder] you should be offered some input from OT re the DCD Dx even without the ASD diagnosis so do push for support if it would help.Karen."

 

Yes, DS2 has finally been referred for OT assessment and support - but he was referred to SALT a year ago, and has only just been offered therapy. So things don't move fast in this area! And he has been referred to clinical psychologist so I can get advice regarding his behaviour. At least the assessments should get done quicker now he is being assessed for a statement.

[Karen A]

"Hi.Dyspraxia is the same as DCD [Developmental Coordination Disorder] you should be offered some input from OT re the DCD Dx even without the ASD diagnosis so do push for support if it would help.Karen."

 

Yes, DS2 has finally been referred for OT assessment and support - but he was referred to SALT a year ago, and has only just been offered therapy. So things don't move fast in this area! And he has been referred to clinical psychologist so I can get advice regarding his behaviour. At least the assessments should get done quicker now he is being assessed for a statement.

 

 

If DS2 is being assessed for a Statement it is worth taking the opurtunity to push to get all of the assessments by the vaious professionals done so that you have their evidence for the statement and get as much written into the Statement as possible. Karen.

[MichelleW]

If DS2 is being assessed for a Statement it is worth taking the opurtunity to push to get all of the assessments by the vaious professionals done so that you have their evidence for the statement and get as much written into the Statement as possible. Karen.

 

 

That is what I plan to do- and having learnt from experience, I need to chase up reports as they tend to get "forgotten"!

[Karen A]

That is what I plan to do- and having learnt from experience, I need to chase up reports as they tend to get "forgotten"!

 

Yes exactly unfortunately.

 

Sorry.I have just noticed you have done this all before.......and probably know more about it than me by far.What is the term teaching mother to suck eggs.

Edited January 11, 2008 by Karen A

[oxgirl]

I used to see the consultant every year but it was a waste of time really so I didn't bother going to one appointment and I never heard from them again.

 

~ Mel ~

[V1971]

I can't believe how little support some of you got! Since G goT his diagnosis last year, we have been seeing specialist all the time: S&L every week, specialist advisory teacher 3 times a week (1:1), Paed every 6 months (more often on the phone), OT every month or so, Educational Phsycologist whenever needed, I can't complain. Now that he is in school, he has full-time support and still sees his advisory teacher every couple of weeks, as well as his S&L therpist 4 weeks per term. He also sees his Paed every 6 months and everyone else is just a phone call away and meetings can be arranged quickly. We are very lucky indeed!

[allsetuk]

wow v1971

this is very good support , apart from being given a list of books to read , i still have no clue who exactly is meant to be keeping an eye on things from a school perspective, nor a medical one really. My psychotherapist for my son told me to come back when my son realises he is wierd and I was lucky he was just hitting me on occasion and not coming at me with knives !!! this i kind of found appauling

[jayne]

When my son was diagnosed 3 years ago at the CDC the paed said no need for anymore appointments if i have any problems to contact them. They do send out a specialist once a year to the school to see how he is getting on and the visit lasts one hour for watching him in class and 15 mins with me if i ask for them to see me. Great support huh.

luv Jayne xx

[bluefish]

Been told we will have a follow up appoinment in six months time..this will be the first since dx

[farfalla]

Had appointment feb 07, DS dx by letter in May, follow up in October, then the next one in a YEAR?

 

dunno if this info helps, or makes you feel worse.

 

sorry far x

[Clare63]

Dx in Jan '07 then nothing.....things went down hill and discovered our case was closed !!!! got re referred by GP now seeing a consultant psychologist monthly. But then I guess each child is different with different needs etc.

 

Good luck hope you find the support you are looking for.

 

Clare x x x

[di30]

The first specialist Daniel used to see every other 2 months and since he was referred to CAMHS, and officially dx'd, its every six months, but if any problems arise then they try to see them a month after after reporting this.

[lynne]

We saw the specialist for the diagnosis than was discharged and told to ask GP for a re-referral if I had any crisis.

 

The ASD lea team did go into school every week to help with my child

 

Lynne