Post by ukbill on Aug 26, 2018 11:12:46 GMT -5
OK we have a 2 hour session with Dr T Cox at Addenbrookes hospital on the 6th November 2018.
I am putting a list of questions to him 3 weeks before the meeting so when we meet it can be to talk solutions not put questions to him.
I have on Facebook listed a few Questions and aims of the support group we are trying to set up for Fructosemic people.
So I know not everyone here is on Facebook.. and I do not blame anyone for ignoring facebook.. SO posting here as well.
All comments and suggestions WILL be put or copied to him so please keep them concise he is a busy man traveling the world all the time to spread the research on Metabolic issues people have.
I will of course offering myself up for research should he have a program going on that I can help with.
Questions (in no particular specific order) I have thought of so far.
1./ I want to discuss renaming the condition (or changing the primary name the condition is known by)
2/. Safe foods list
3/. Number of genetic variations. 2 3 or 4 genes causing upto 32 variants or more of our condition.
4/. I want his oversight of a website to ensure accurate up to date information.
5/. His (or a genetic dietitian he recommends) oversight and advice on a series of youtube videos on safe foods to cook and treats for babies and children I am planning on making.
6/. A way of people with the condition and the carers of people with the condition can get professional, accurate medical / dietary advice.
7/. How to get in front of pediatricians, midwifes and people involved with pediatric care and trainers of these groups to spread the word both in the UK and world wide.
Additional suggestions currently made include:-
Care of pregnant women who have HFI (we need special management of prenatal nutrition, medicaton advice etc)
Medical/pharmaceutical practitioner awareness of medications that use sucrose, fructose, or sorbitol as excipients eg cancer medications.
(and can he clarify on the safety for people with HFI of other chemicals that are related eg polysorbate).Recommendations of testing to request, such as annual ultrasounds of liver, blood work to monitor liver functioning, and blood work to monitor whether nutritional needs are being met.
I'd like to know how often he thinks people with Fructosemia should be seen for 'check ups' and what should be tested at these. I am seen every 2 years, have bloods tested and see a dietitian but I haven't had a liver ultrasound for at least 8 years and not sure if this should be done more regularly.
I Had an idea for a blood test that looks directly for un metabolized Fructose Phosphate in the blood. This would be a quick indicator for Fructosemia / Hfi will ask Dr Cox
Ask if Dr. Cox is familiar with current research to intervene earlier in the metabolic process so fructose1 phosphate is not produces. Dr. Dean Tolan BU, in the US is familiar with this.
There will be more (I hope)
Anyone want to help sorting these out into an order of preference (or none?)
On we go!
I am putting a list of questions to him 3 weeks before the meeting so when we meet it can be to talk solutions not put questions to him.
I have on Facebook listed a few Questions and aims of the support group we are trying to set up for Fructosemic people.
So I know not everyone here is on Facebook.. and I do not blame anyone for ignoring facebook.. SO posting here as well.
All comments and suggestions WILL be put or copied to him so please keep them concise he is a busy man traveling the world all the time to spread the research on Metabolic issues people have.
I will of course offering myself up for research should he have a program going on that I can help with.
Questions (in no particular specific order) I have thought of so far.
1./ I want to discuss renaming the condition (or changing the primary name the condition is known by)
2/. Safe foods list
3/. Number of genetic variations. 2 3 or 4 genes causing upto 32 variants or more of our condition.
4/. I want his oversight of a website to ensure accurate up to date information.
5/. His (or a genetic dietitian he recommends) oversight and advice on a series of youtube videos on safe foods to cook and treats for babies and children I am planning on making.
6/. A way of people with the condition and the carers of people with the condition can get professional, accurate medical / dietary advice.
7/. How to get in front of pediatricians, midwifes and people involved with pediatric care and trainers of these groups to spread the word both in the UK and world wide.
Additional suggestions currently made include:-
Care of pregnant women who have HFI (we need special management of prenatal nutrition, medicaton advice etc)
Medical/pharmaceutical practitioner awareness of medications that use sucrose, fructose, or sorbitol as excipients eg cancer medications.
(and can he clarify on the safety for people with HFI of other chemicals that are related eg polysorbate).Recommendations of testing to request, such as annual ultrasounds of liver, blood work to monitor liver functioning, and blood work to monitor whether nutritional needs are being met.
I'd like to know how often he thinks people with Fructosemia should be seen for 'check ups' and what should be tested at these. I am seen every 2 years, have bloods tested and see a dietitian but I haven't had a liver ultrasound for at least 8 years and not sure if this should be done more regularly.
I Had an idea for a blood test that looks directly for un metabolized Fructose Phosphate in the blood. This would be a quick indicator for Fructosemia / Hfi will ask Dr Cox
Ask if Dr. Cox is familiar with current research to intervene earlier in the metabolic process so fructose1 phosphate is not produces. Dr. Dean Tolan BU, in the US is familiar with this.
There will be more (I hope)
Anyone want to help sorting these out into an order of preference (or none?)
On we go!
