Should I ask for referral to GOSH?

novelli

Dainty1976 wrote: »

Hi all,

Just wanted some advice - not sure if here or the Marriage & Family board is best but have decided to post here so here goes...

My DS is 5yrs old.

In the past year he has been diagnosed with:

Classic Autism
Dyspraxia - Gross and Fine
Hypermobility Syndrome
Hypotonia
Sensory Processing Disorder
ADHD Tendancies
General Anxiety Disorder
and last week Genetesist found that he has XYY Syndrome

Our local services are ok (OT is outstanding) but I am thinking that with so many problems it would be best to go with the best and ask for a referral to GOSH.

According to Physio, he is going to have major problems with the physical side of XYY because of his HMS, Hypotionia and Dyspraxia. He is constantly is pain all the time as it is and I'm thinking he should be seen by the Rheumatologist anyways, but it seems that unless I suggest these things the hospital isnt very proactive. Once I suggest treatments/therapies they usually agree that it would be a good idea which leaves me thinking why they didnt suggest it themselves in the first place.

Also, the Genetesist has insisted on referring him onto a Specialist Autistic Peadiatrician as she thinks that he is probably not a Classic Autie but rather an Aspie instead, which I am in agreement with (but of course CAMHS wont change their diagnosis). Feel like we are going round in circles and that is we went to GOSH where everything is under one roof, it could all be managed so much better.

Am i being overprotective or overbearing by asking for a referral to GOSH? Should I be happy with what he is getting? I just want the best for him. What would you do?

There is a clinic very near to you in Horsham.
Dr Kewley
learning Assessment and Neurocare centre.

he is excellent and very experienced in co morbids.
Would highly recommend you ask your GP for a referrral.

freddie2

This is not an NHS clinic so funding would have to be agreed or paid for privately

Dainty1976

freddie2 wrote: »

Forgot to say my nephew has XYY. he was tested at aged 3yrs due to some other health problems and to everyones suprise was found to have XYY.
He is very tall 6ft 5in and as a little one was a handful but is hopefully off to uni in september.
There has been quite a bit of research on XYY boys and their difficulties seem to be mainly around behaviour, which does seem to improve with age. It is also thought that there are many men out there with XYY who dont know about it.
It sounds like you sons difficulties may well be associated with the diognosis of autism (which is more common in boys with XYY, again apparently improving with age) so the suggestion of a referral to an autism specialist sounds a good one!

Thanks for your response Freddie

I'd be really interested in hearing how your nephew got on with school and such during his earlier years. Its great that he's off to Uni now! Well done that boy. The studies I've read say that XYY's will be anywhere between 5 to 7 inches taller than their father. DS's dad is 6ft3 so we are looking at somewhere between 6ft8 and 6ft11!!!! he is already in age 9 to 10yrs clothes and he's only 5yrs 8months old!

I do think that he needs a referral to an Autism specialist although am really worried it'll turn everything on its head (iykwim) and a conflicting diagnosis wont actually be of any help. I read the Day study report a few days back and its really quiet helpful. The Genetesist suspects DS is one of the minority who experiences very apparant problems due to the XYY and that this is contributing to (but not superceding) his diagnosis.

I suspect that his diagnosis of Classic Autism ultimately comes down to the fact that his detatchment from the world was quite obvious from very young (I noticed things as early as 6 weeks old) although that has vastly improved with age. I am meeting with his Clin Psych on Tuesday and am going to ask her to clarify exactly why she determined it is CA rather than Aspergers or ASD but I dont think I'll get a straightforward answer this time, as I haven't had one yet from her - I'm just not convinced he is CA and I cant put the thought down!

novelli

freddie2 wrote: »

This is not an NHS clinic so funding would have to be agreed or paid for privately

They take many NHS referrals from all over the country. Ask your GP.

Dainty1976

novelli wrote: »

They take many NHS referrals from all over the country. Ask your GP.

Thanks for this suggestion all!

Seems very focused on ADHD (which Clin Psych says she thinks he has the innatentive form and wants to prescribe Ritalin on Tuesday) - I think I will discuss this clinic with both the genetesist and the clin psych, see what they think! Dont know how I'd arrange the funding but they might know!

Just so you know also, the LANC website says they now have a London Clinic also! - both are within reach for us!

novelli

Dainty1976 wrote: »

Thanks for this suggestion all!

Seems very focused on ADHD (which Clin Psych says she thinks he has the innatentive form and wants to prescribe Ritalin on Tuesday) - I think I will discuss this clinic with both the genetesist and the clin psych, see what they think! Dont know how I'd arrange the funding but they might know!

Just so you know also, the LANC website says they now have a London Clinic also! - both are within reach for us!

your GP should be able to arrange funding, he may not want to or the local authority may not want to but they can do it. Its called an out of county referral.

The geneticist at GOSH will know of the clinic as we were referred to GOSH geneticist from there.

Jojo_the_Tightfisted

Dainty1976 wrote: »

Hi MrsManda

He is seen at the local hospital (its not a childrens hospital). We are based in Croydon.

As far as I know there are no specialist consultants there. Their childrens services are limited in these areas and often they have visiting consultants who come and do clinics on different timetables.

Then get a referral to GOSH.


I know Mayday. (sorry, CUH, as they are so desperate to distance themselves from their reputation)

shays_mum

I would look at the condition that affects your dd the worst & find the best consultant from there. Def join some forums & get advice from people who have already been through the process. x

Jojo_the_Tightfisted

shays_mum wrote: »

I would look at the condition that affects your dd the worst & find the best consultant from there. Def join some forums & get advice from people who have already been through the process. x

Or people who have been treated by/worked at the current hospital.

:whistle:

shays_mum

Jojo_the_Tightfisted wrote: »

Or people who have been treated by/worked at the current hospital.


Yer if its the best place to be!, but the consultants who specialise in certain conditions are not always the ones at your local hospital. I believe we are now allowed to choose where & who we want to see for treatments, whether the pct (if they are still there!) or gp's will fund it is another story .

I wouldn't dream of having my kids treated for hms @ Mayday, only because i know they can't treat them there, as they don't have specialist staff. I am treated as Mayday by a rhuemy only as a local care provider & only after i was officially diagnosed with EDS3 by my main specialist who i see once a year & other physio's etc are done elsewhere.