£$%^^&^%$£**&^% DRS
This has been permitted by Admin to be a duplicate post elsewhere, due to the importance information contained within
DOQ excluded...[sm=hug.gif]
As many of you know My Autistic son started having fits in October last year. & has been having various tests ..last time we saw the paediatrician it was reviled that Daniel has epileptiform coming from both sides of the brain in the L temporal & in the R side of the frontal lobes, & was Diagnosed with Complex partial seizures with Clonic Tonic seizures when both sides of the brain fire up together. We talked about medication & we expressed our concern about starting medication about how we didn't want to go down that route if possible to avoid it & it was suggested we see the consultant neurologist which we have been waiting to receive an appt for. Today in the post I receive a letter from the paediatrician ( who is very nice) saying the Paediatric neurologist wrote back to him saying she was happy to start Daniel on medication along with a prescription for Epilim ( smalll dose) . I'm livid about this . The woman hasn't even spoken to us on the phone .. how can she prescribe with out at least seeing him even if she does have the test results ??
You know if the neurologist had even spoken to us on the phone it wouldn't of been so bad .Even if we did just as she asked.. our thoughts & feelings but to be made to feel like a non-entity in ours Sons welfare is so very wrong IMO. When will some DRs learn that as practitioners, parents etc we are a team not a hierarchy.
Love & hugs Maria xxx
Answers:
Big [sm=hug.gif].
It definitely seems to be one of those days.
Love and Reiki Hugs
Answers:
Thank you Giles I needed that
Hugs Maria xxx
Answers:
Maria honey - sorry to hear of your difficulties. [sm=hug.gif] The only thing I can say regarding the paediatric neurologist is that he/she obviously felt that they did not want to have a wasted appointment all round if their opinion regarding best medication was not going to be heeded - from the orthodox point of view, anticonvulsants would be the only route considered, and such appointments are like gold dust. At least you get on with the paediatrician!
Regarding management without medication - I can recommend The Autism Centre of America ( Son-Rise program ) - I helped on their Start-up here in Enfield at beginning of the year, and they are just so special. They give specific dietary recommendations with regard to autism. There is a book I would recommend called 'Brain Allergies: The Psychonutrient and Magnetic Connections' by: Willam H.Philpott - he talks about magnet therapy, and I have some experience of that if you wish to PM me.
with love and hugs - Doq xxx
Answers:
Crystal Moonchild
[sm=hug.gif][sm=grouphug.gif]
To all of you
Maxine
Answers:
Dear Doq
Thank you for your yet again wise words. Thing is that the appointment wouldn't of been wasted. The Peadiatrician Said this was not his area of expertise especially as Daniel is also Autistic & he wasn't sure how to treat it as regards to any medication upsetting his Autisim ( he has a semantic & Pragmatic disorder). We had discussed and agreed that Discussing the medications & perhaps alternatives As I had said & he agreed that if the clonic tonic episodes were not to frequant that we may be trying to crack a nut with a sledge hammer. Also the Pead wanted a confirmed diagnosis.All i wanted was the oppertunity to discuss my son with them & what was best for him ..I am very open to both sides of medicine but do avoid medication if possable.I was willing to go to London for this . Right now I feel that my thoughts opinions & feelings regards Daniel are considered worthless. I wasn't going to say an absoloute no I wanted to talk about the options. The only thing I know about Epilim is that it can possably effect the Liver & cause weight gain .
Thank you for your further advice as well I will certainly PM you If I don't get asround to it feel free to PM me.
The Peadiatrician has Still asked for the neurologist to see Daniel. But I'm sorry i still think it is very wrong to prescribe for something like this with out seeing the patient maybe thats just me;)
Hugs Maria xx
Answers:
Maria,
I have to agree with you - I would be incensed if someone perscribed something for my child like that. It is the parent's job to protect their child and provide care with their best interests at heart and how can anyone make an informed decision without collating all visual as well as historic information to hand. This is someones quality of life to be considered here.
I would assume from the Ped's action in further requesting a appointment that he/she concurs with your point of view.
I wish you well.
Love n light
Maxine
Answers:
Thanks for the hugs :)Oh well i suppose i'll find the whole reasoning when I see her. Must try to remain positive
Hugs Maria xxx
Answers:
Hi Maria
Sending lots of love and [sm=hug.gif][sm=hug.gif][sm=hug.gif] to you
Tizana xxx
Answers:
I agree i think you should of had the opportunity to discuss the situation what you say I believe is correct you are a team, i wish you all well.
Paul [sm=grouphug.gif]
Answers:
Maria honey - I agree, it would not have been a waste of your time - and it is a shame the paediatric neurologist feels she does not have the time to discuss all the pro's and con's. However, I have to say that when you stated :
my impression was that you appeared reluctant to accept medication from the paediatrician, and so he offered a 'second opinion' with the big white chief, probably expecting that the advice would be the same - ie medication.
Big white chief would seem to see it as a "no-brainer, and is in effect saying 'the answer to this question is obvious please just go ahead and treat with usual anticonvulsant'. Factors like being extremely overworked may come into this, as well as possible personality factors I am not in a position to comment on.
It is important to note whether it is your paediatrician who is the one prescribing the medication - whose signature is on the prescription?? I may be wrong, but it would be highly unlikely that the paediatric neurologist would send her colleague an actual prescription.
Good luck with getting all the advice you need to make a decision, and I will gladly help in any way I can. I mentioned the - please do look at their website, as they are just mega-brill [sm=dance.gif] They are international, and the European Training for their program takes place here in London - with start-up week here in Enfield. The last one was filmed by the BBC, and should be going out quite soon.
with [sm=love-smiley-009.gif][sm=love-smiley-009.gif][sm=love-smiley-009.gif] & [sm=grouphug.gif] Doq xx
Answers:
Maria, I'm so sorry you are feeling bad about this situation and I hope things work out for the best possible advantage for your son,
Best wishes to you all,
Sharon
Answers:
Thanks Doq [sm=hug.gif]i'll PM you over the weekend .
Hugs Maria xx
Answers:
Everyone else thank you for your love & support
Hugs Maria xx
Answers:
Maria Honey - came across my scribbled notes from the time on the Autism Workshop in January - so more information for you regarding diet.
The top 4 important exclusions they recommend are - Gluten, Casein, Caffeine and Sugar. There is a website they gave out which is - there are some interesting reports from parents on results achieved.
Have you got an appointment with the Paediatric Neurologist yet?
with [sm=love-smiley-009.gif]&[sm=hug.gif] Doq xxx
DOQ excluded...[sm=hug.gif]
As many of you know My Autistic son started having fits in October last year. & has been having various tests ..last time we saw the paediatrician it was reviled that Daniel has epileptiform coming from both sides of the brain in the L temporal & in the R side of the frontal lobes, & was Diagnosed with Complex partial seizures with Clonic Tonic seizures when both sides of the brain fire up together. We talked about medication & we expressed our concern about starting medication about how we didn't want to go down that route if possible to avoid it & it was suggested we see the consultant neurologist which we have been waiting to receive an appt for. Today in the post I receive a letter from the paediatrician ( who is very nice) saying the Paediatric neurologist wrote back to him saying she was happy to start Daniel on medication along with a prescription for Epilim ( smalll dose) . I'm livid about this . The woman hasn't even spoken to us on the phone .. how can she prescribe with out at least seeing him even if she does have the test results ??
You know if the neurologist had even spoken to us on the phone it wouldn't of been so bad .Even if we did just as she asked.. our thoughts & feelings but to be made to feel like a non-entity in ours Sons welfare is so very wrong IMO. When will some DRs learn that as practitioners, parents etc we are a team not a hierarchy.
Love & hugs Maria xxx
Answers:
Big [sm=hug.gif].
It definitely seems to be one of those days.
Love and Reiki Hugs
Answers:
Thank you Giles I needed that
Hugs Maria xxx
Answers:
Maria honey - sorry to hear of your difficulties. [sm=hug.gif] The only thing I can say regarding the paediatric neurologist is that he/she obviously felt that they did not want to have a wasted appointment all round if their opinion regarding best medication was not going to be heeded - from the orthodox point of view, anticonvulsants would be the only route considered, and such appointments are like gold dust. At least you get on with the paediatrician!
Regarding management without medication - I can recommend The Autism Centre of America ( Son-Rise program ) - I helped on their Start-up here in Enfield at beginning of the year, and they are just so special. They give specific dietary recommendations with regard to autism. There is a book I would recommend called 'Brain Allergies: The Psychonutrient and Magnetic Connections' by: Willam H.Philpott - he talks about magnet therapy, and I have some experience of that if you wish to PM me.
with love and hugs - Doq xxx
Answers:
Crystal Moonchild
[sm=hug.gif][sm=grouphug.gif]
To all of you
Maxine
Answers:
Dear Doq
Thank you for your yet again wise words. Thing is that the appointment wouldn't of been wasted. The Peadiatrician Said this was not his area of expertise especially as Daniel is also Autistic & he wasn't sure how to treat it as regards to any medication upsetting his Autisim ( he has a semantic & Pragmatic disorder). We had discussed and agreed that Discussing the medications & perhaps alternatives As I had said & he agreed that if the clonic tonic episodes were not to frequant that we may be trying to crack a nut with a sledge hammer. Also the Pead wanted a confirmed diagnosis.All i wanted was the oppertunity to discuss my son with them & what was best for him ..I am very open to both sides of medicine but do avoid medication if possable.I was willing to go to London for this . Right now I feel that my thoughts opinions & feelings regards Daniel are considered worthless. I wasn't going to say an absoloute no I wanted to talk about the options. The only thing I know about Epilim is that it can possably effect the Liver & cause weight gain .
Thank you for your further advice as well I will certainly PM you If I don't get asround to it feel free to PM me.
The Peadiatrician has Still asked for the neurologist to see Daniel. But I'm sorry i still think it is very wrong to prescribe for something like this with out seeing the patient maybe thats just me;)
Hugs Maria xx
Answers:
Maria,
I have to agree with you - I would be incensed if someone perscribed something for my child like that. It is the parent's job to protect their child and provide care with their best interests at heart and how can anyone make an informed decision without collating all visual as well as historic information to hand. This is someones quality of life to be considered here.
I would assume from the Ped's action in further requesting a appointment that he/she concurs with your point of view.
I wish you well.
Love n light
Maxine
Answers:
Thanks for the hugs :)Oh well i suppose i'll find the whole reasoning when I see her. Must try to remain positive
Hugs Maria xxx
Answers:
Hi Maria
Sending lots of love and [sm=hug.gif][sm=hug.gif][sm=hug.gif] to you
Tizana xxx
Answers:
I agree i think you should of had the opportunity to discuss the situation what you say I believe is correct you are a team, i wish you all well.
Paul [sm=grouphug.gif]
Answers:
Maria honey - I agree, it would not have been a waste of your time - and it is a shame the paediatric neurologist feels she does not have the time to discuss all the pro's and con's. However, I have to say that when you stated :
my impression was that you appeared reluctant to accept medication from the paediatrician, and so he offered a 'second opinion' with the big white chief, probably expecting that the advice would be the same - ie medication.
Big white chief would seem to see it as a "no-brainer, and is in effect saying 'the answer to this question is obvious please just go ahead and treat with usual anticonvulsant'. Factors like being extremely overworked may come into this, as well as possible personality factors I am not in a position to comment on.
It is important to note whether it is your paediatrician who is the one prescribing the medication - whose signature is on the prescription?? I may be wrong, but it would be highly unlikely that the paediatric neurologist would send her colleague an actual prescription.
Good luck with getting all the advice you need to make a decision, and I will gladly help in any way I can. I mentioned the - please do look at their website, as they are just mega-brill [sm=dance.gif] They are international, and the European Training for their program takes place here in London - with start-up week here in Enfield. The last one was filmed by the BBC, and should be going out quite soon.
with [sm=love-smiley-009.gif][sm=love-smiley-009.gif][sm=love-smiley-009.gif] & [sm=grouphug.gif] Doq xx
Answers:
Maria, I'm so sorry you are feeling bad about this situation and I hope things work out for the best possible advantage for your son,
Best wishes to you all,
Sharon
Answers:
Thanks Doq [sm=hug.gif]i'll PM you over the weekend .
Hugs Maria xx
Answers:
Everyone else thank you for your love & support
Hugs Maria xx
Answers:
Maria Honey - came across my scribbled notes from the time on the Autism Workshop in January - so more information for you regarding diet.
The top 4 important exclusions they recommend are - Gluten, Casein, Caffeine and Sugar. There is a website they gave out which is - there are some interesting reports from parents on results achieved.
Have you got an appointment with the Paediatric Neurologist yet?
with [sm=love-smiley-009.gif]&[sm=hug.gif] Doq xxx