Re: Re: Appointment with Paediatircian

[Guest guest]

Hi Jayne,I really second what Margaret has said, be very cautious if this paed suggests undertaking any GI investigations as paediatric GI investigations is a relatively new (last 10 years per our Paed GI) area of medicine and in the case of my son, even one of the most experienced Paed Gastros in the UK was not able to treat him, by his own admission, my son needed a tertiary referral for treatment to a very specialised clinic for his particular gastro problems. 

Of course, your paed may be exceptional in dealing with Paed GI issues, that is just something you have to judge based on your appointments.  And I heartily second what Margaret says re causes of ASD.  We were very careful never to even discuss our son's ASD and rather chose to focus on his symptoms.  

The tertiary consultant volunteered the comment that he believes that our son's ASD is secondary to a primary syndrome but he has told us that it could take years before any conclusion as to which syndrome it is is reached and since the diagnosis would not inform any treatment decisions there was no urgency.  

Anyway, I wish you all the best.  Darla 

 

Thanks MargaretI really appreciate your reply - sounds like you had an awful time, hope things are a little better for him and you too

Jayne

To: Autism-Biomedical-Europe

Sent: Wednesday, 25 January 2012, 23:09 Subject: Re: Appointment with Paediatircian

 

Not saying this will happen to you - but we saw a paediatrician with an interest in gastroenterology who failed to examine my child and who then carried out a transit study incorrectly. We didn't get help until we saw a gastroenterologist. We eventually saw 3 gastroenterologists at 2 hospitals. They were in general agreement that the earlier treatment had been wrong (movicol, movicol, movicol and other laxatives )and that it had been giving him confusing signals that meant he'd lost his ability to recognise when he needed to defecate. By this stage, a full colostomy was being proposed becasue the encopresis was so bad and so long-standing. (We used suppositories for 9 months and eventually he learned to use the loo.)

In general I think it best to talk about symptoms: behaviours, pain, diarrhoea, whatever the symptoms are. Don't speculate about links to or casues of autism - it's a hot potato area doctors feel threatened. I would suggest it's probabaly best just to get your child investigated on the basis of his symptoms and to try and get medical help based on what is found.

Margaret

>

> Hi All

> I just wanted to ask some advice about an appointment we have in March for my little boy (age 5, non verbal asd & ld, plus lots of food allergies and frequent ? viral infections, plus usual gut/stool issues). The appointment is with a Paediatrician who as an interest in Gastroenterology.This appointment came about as I went back to my GP re concerns about his physical health - I know many of you will have had the same experience I did of pretty much being dismissed for even wondering about links between his physical health problems and his asd. So,  wanted to ask what would be the most useful things to try to get from this appointment for my son - I'm wondering about an x-ray to check for loading, some kind of immune system checks, ? checks for his viral load that kind of thing. The concerns I had raised about his physical health were - frequent episodes of ill health, high fever, lethargy, rashes, swollen lymph glands neck and groin,

vomit with no

> smell, never having had a formed poo, frequent poos. Thanks for any help with this.

> Jayne

>

[Guest guest]

Thank you Darla for your message and advice - it's so good to hear and learn from you all on here. Best wishes to you and your son.Jayne To: Autism-Biomedical-Europe Sent: Thursday, 26 January 2012, 14:16 Subject: Re: Re: Appointment with Paediatircian

Hi Jayne,I really second what Margaret has said, be very cautious if this paed suggests undertaking any GI investigations as paediatric GI investigations is a relatively new (last 10 years per our Paed GI) area of medicine and in the case of my son, even one of the most experienced Paed Gastros in the UK was not able to treat him, by his own admission, my son needed a tertiary referral for treatment to a very specialised clinic for his particular gastro problems.

Of course, your paed may be exceptional in dealing with Paed GI issues, that is just something you have to judge based on your appointments. And I heartily second what Margaret says re causes of ASD. We were very careful never to even discuss our son's ASD and rather chose to focus on his symptoms.

The tertiary consultant volunteered the comment that he believes that our son's ASD is secondary to a primary syndrome but he has told us that it could take years before any conclusion as to which syndrome it is is reached and since the diagnosis would not inform any treatment decisions there was no urgency.

Anyway, I wish you all the best. Darla

Thanks MargaretI really appreciate your reply - sounds like you had an awful time, hope things are a little better for him and you too

Jayne

To: Autism-Biomedical-Europe

Sent: Wednesday, 25 January 2012, 23:09 Subject: Re: Appointment with Paediatircian

Not saying this will happen to you - but we saw a paediatrician with an interest in gastroenterology who failed to examine my child and who then carried out a transit study incorrectly. We didn't get help until we saw a gastroenterologist. We eventually saw 3 gastroenterologists at 2 hospitals. They were in general agreement that the earlier treatment had been wrong (movicol, movicol, movicol and other laxatives )and that it had been giving him confusing signals that meant he'd lost his ability to recognise when he needed to defecate. By this stage, a full colostomy was being proposed becasue the encopresis was so bad and so long-standing. (We used suppositories for 9 months and eventually he learned to use the loo.)

In general I think it best to talk about symptoms: behaviours, pain, diarrhoea, whatever the symptoms are. Don't speculate about links to or casues of autism - it's a hot potato area doctors feel threatened. I would suggest it's probabaly best just to get your child investigated on the basis of his symptoms and to try and get medical help based on what is found.

Margaret

>

> Hi All

> I just wanted to ask some advice about an appointment we have in March for my little boy (age 5, non verbal asd & ld, plus lots of food allergies and frequent ? viral infections, plus usual gut/stool issues). The appointment is with a Paediatrician who as an interest in Gastroenterology.This appointment came about as I went back to my GP re concerns about his physical health - I know many of you will have had the same experience I did of pretty much being dismissed for even wondering about links between his physical health problems and his asd. So, wanted to ask what would be the most useful things to try to get from this appointment for my son - I'm wondering about an x-ray to check for loading, some kind of immune system checks, ? checks for his viral load that kind of thing. The concerns I had raised about his physical health were - frequent episodes of ill health, high fever, lethargy, rashes, swollen lymph glands neck and groin,

vomit with no

> smell, never having had a formed poo, frequent poos. Thanks for any help with this.

> Jayne

>

[Guest guest]

Thank you Darla for your message and advice - it's so good to hear and learn from you all on here. Best wishes to you and your son.Jayne To: Autism-Biomedical-Europe Sent: Thursday, 26 January 2012, 14:16 Subject: Re: Re: Appointment with Paediatircian

Hi Jayne,I really second what Margaret has said, be very cautious if this paed suggests undertaking any GI investigations as paediatric GI investigations is a relatively new (last 10 years per our Paed GI) area of medicine and in the case of my son, even one of the most experienced Paed Gastros in the UK was not able to treat him, by his own admission, my son needed a tertiary referral for treatment to a very specialised clinic for his particular gastro problems.

Of course, your paed may be exceptional in dealing with Paed GI issues, that is just something you have to judge based on your appointments. And I heartily second what Margaret says re causes of ASD. We were very careful never to even discuss our son's ASD and rather chose to focus on his symptoms.

The tertiary consultant volunteered the comment that he believes that our son's ASD is secondary to a primary syndrome but he has told us that it could take years before any conclusion as to which syndrome it is is reached and since the diagnosis would not inform any treatment decisions there was no urgency.

Anyway, I wish you all the best. Darla

Thanks MargaretI really appreciate your reply - sounds like you had an awful time, hope things are a little better for him and you too

Jayne

To: Autism-Biomedical-Europe

Sent: Wednesday, 25 January 2012, 23:09 Subject: Re: Appointment with Paediatircian

Not saying this will happen to you - but we saw a paediatrician with an interest in gastroenterology who failed to examine my child and who then carried out a transit study incorrectly. We didn't get help until we saw a gastroenterologist. We eventually saw 3 gastroenterologists at 2 hospitals. They were in general agreement that the earlier treatment had been wrong (movicol, movicol, movicol and other laxatives )and that it had been giving him confusing signals that meant he'd lost his ability to recognise when he needed to defecate. By this stage, a full colostomy was being proposed becasue the encopresis was so bad and so long-standing. (We used suppositories for 9 months and eventually he learned to use the loo.)

In general I think it best to talk about symptoms: behaviours, pain, diarrhoea, whatever the symptoms are. Don't speculate about links to or casues of autism - it's a hot potato area doctors feel threatened. I would suggest it's probabaly best just to get your child investigated on the basis of his symptoms and to try and get medical help based on what is found.

Margaret

>

> Hi All

> I just wanted to ask some advice about an appointment we have in March for my little boy (age 5, non verbal asd & ld, plus lots of food allergies and frequent ? viral infections, plus usual gut/stool issues). The appointment is with a Paediatrician who as an interest in Gastroenterology.This appointment came about as I went back to my GP re concerns about his physical health - I know many of you will have had the same experience I did of pretty much being dismissed for even wondering about links between his physical health problems and his asd. So, wanted to ask what would be the most useful things to try to get from this appointment for my son - I'm wondering about an x-ray to check for loading, some kind of immune system checks, ? checks for his viral load that kind of thing. The concerns I had raised about his physical health were - frequent episodes of ill health, high fever, lethargy, rashes, swollen lymph glands neck and groin,

vomit with no

> smell, never having had a formed poo, frequent poos. Thanks for any help with this.

> Jayne

>