Should I ask for referral to GOSH?

Dainty1976

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?

MrsManda

Where are you based?
Is your child seen at a Children's Hospital?

GOSH is a good hospital but it's not necessarily the best to deal with your child's problems, or at least it's not necessarily better than others.
Have you asked or researched whether there are consultants who specialise with the kinds of problems your child is facing?

It may be worth having a chat with your child's consultant and letting them know you are willing to travel if they can suggest a consultant who specialises in your child's problems.

Dainty1976

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.

GlasweJen

It would be better to research a consultant at any hospital and ask your child to be referred to consultant X than to just demand a referral to GOSH. The hospital itself wont make any difference but finding an expert in the field and seeing that person will help a lot more.

Dainty1976

Thanks Glaswejen - Good advice - didnt think of that view.

Wouldnt know where to start, but am going to try looking up consultants myself. I know there is a good consuntlant at GOSH who specialises in HMS, I am worried about all the comorbid problems.

Apparantly he is at high risk for developing further mental health issues as he gets older too (so I'm told by Pead Cons)

GlasweJen

Are you a member of any sites for XYY syndrome? I'd start with a specialist in that and then he/she can refer you on from there.

Dainty1976

I looked up Unique as directed by consultant - they want specific chromosome pattern details for registration. Am waiting for it in writing from Genetesist to know it. Am going to reg on there as soon as I have it!

GlasweJen

Once you're on there you can ask other posters who they see and how supportive they are. Get yourself a 1st choice and a backup choice consultant and then ask your GP for a referral to them. Back it up with things like "consultant A and hospital Z has a special interest in XYY syndrome and learning difficulties which my child has, the consultant we currently see doesn't specialise in this so I'd like a referral to consultant A so that my child has the best support".

Good luck OP!

freddie2

Discuss with the genetisist if there is an appropriate consultant to see your little one.
GOSH probably is not the right place, it is an acute hospital, you need a good child development centre and community paediatrician, which it sounds like you may have, who will access specialist support as needed.

freddie2

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!

freddie2

http://www.rarechromo.org/files/XYYStudyDayReport.pdf
This may be helpful