UPDATE: I have had an email from a Tokyo Doctor, spoken to NZ customs/bio-security and got the all clear to import DKT for personal use! Now awaiting a response from the very lovely kind Japanese Dr.... I leave you with exerts from his first email that made me smile: Thank you for your E-mail. I can help you and your son. I give you my answers for your questions......MMIHS is one of the disease that difficult to care. I wish to get better your son some day.
Ok, lots of info to pass on that is very cool. Sam is over his cold - yay, BUT he was still a bit grotty so his teeth coating under GA was postponed til July 13. The immunology clinic was cancelled due to illness, but the gastro clinic went ahead. Sam has put on 2.5 kgs in 6 weeks, so they are thinking he is possibly absorbing more in his intestine than they had allowed in calculations, so they have lowered the fats in the IVN and he has been dropped from 14 hours of IV nutrition to 12! That extra 2 hours is huge for us - means that when he is awake he can be mobile as he is unhooked from a pump! While in clinic I threw out my usual string of hair brained theories and ideas for the consultant to mull over - he is very gracious and hasn't rolled his eyes at me yet.... BUT after head scratching and 'mulling' by the gastro consult and dietician they ok'ed that I could start juicing veges and putting them directly into Sam's tube. My theory behind this was that as he often needs iron infusions, why not juice spinach/greens and put it directly into him.... SO for the past 10 days Sam has been having 60mls per day of 'green' juice mixed with a little orange juice (to help absorption). It will be interesting to see his iron levels when I do his blood tests in 2 weeks time! The other idea that I have been bringing up over past months is the use of a natural substance used in Japan with good results - it's called Dai-Kenchu-To (DKT) and it is ginger and ginseng with 1 other plant derivative. Having researched (hours on the web) I have found various research papers from Japan and the USA showing good symptom control of gastro issues with the use of DKT. In Japan for the past 15 years DKT is the first substance used in all gastro patients and 89% show great results, 5% show moderate results and 6% it hasn't worked for, then they add in other meds according to initial response on DKT. So, as Sam still continues to vomit (especially through the night), Sams consultant has said if I can find it I can use it.... YAY I thought, how hard can it be to get a product from Japan that isn't licensed here? Well, funny you should ask.... After several emails and hearing nothing back, I took to searching through Tokyo University Medical pages last night and have sent off a bunch of letters to various researches/doctors today. There is a family in the USA that are using DKT but they import it from Tokyo and I am trying to track them down... so I feel like I'm looking for that needle in a haystack, but feel quite excited about the possibility. I have made various calls around NZ to pharmaceuticals and have a piece of paper with Japanese on it, that has been converted into Chinese for a Chinese herbal medicine guy that 'can give you the separate ingredients and you can measure and cook up yourself'...... this option terrifies me, with the potential for 'lost in translation' and then my 'cooking' - too many variables for a special little man that we are trying to help, not experiment on. I also don't want my kitchen to resemble a lab. So, I will wait and pray and hope that someone responds to my many letters/emails.
So he is looking really great and strong at the moment, although he has had a few major falls in the past few days so his confidence has been knocked again, but we have physio tomorrow which is great.
Tonight Sam is having an overnight oximeter test - we have just hooked up the monitor in his room, to read and record what he really gets up to overnight, for the ENT and respiratory team to get a hold on what Sam is up to in order to figure out what to do with his large tonsils.
Ok, off to get some sleep - my dear lost friend that I long to be reacquainted with - hoping that DKT can help bring us back together!
Lots of love. X S