lynn

So as I sort of expected, DS17 has both CBS and BHMT hetero mutations, hence the failure of my attempts to give him "nice soothing epsom salt baths" that turned him into a furious ball of anger looking for a target. He has a bunch of other mutations too, some of which require conflicting support (both push and restrict taurine, for example.)
 
I really wish there was a doctor where you could just go up to them and say, "Here are DSs 23andme results, please tell me what to do," and he would know, as opposed to asking what I want to do. (What I want to do is have several large gin and tonics, but that doesn't seem helpful to anyone but me.) I know that I need to go to all of the references that LLM has very very helpfully provided and read through them and figure it all out, (and then break through DH's wall of denial and disbelief) and I will do that, but is there actually a doctor anywhere near NYC or available on Skype who can work with me on this?
 
OK, whine is over. I should actually be happy, since now I have an actual clue as to what is going on, and that puts me ahead of 90% of the doctors that I have worked with!
 
Thanks to all the hardworking people on this board who figured this out (LLM) and who fearlessly post about it so the slower of us can catch up and get it!
 
Lynn

Clonidine helped DS18 with sleep and measurably decreased the tics. However, the initial amount prescribed was way too high and he couldn't stay awake even after taking it for about a month--also had a slight decrease in "sharpness" of thinking. I tapered down to half the dose and now he is doing much better (although he claims to miss the feeling of being "knocked out.") Otherwise, I don't see any negatives to it.

So maybe we could get some of that "good," "skinny" gut bacteria we were talking about in another thread via this same delivery system?!?! Then I could slim down without the "old school" methodology of introducing said bacteria! :-)
 
Much less urgent call to arms than for c-diff, of course, but has its own appeal, nonetheless!

You know, I knew there had to be a catch somewhere. I'd like the bacteria where you can have ice cream every day and stay thin (DH apparently has it, why not me?)

You know, I knew there had to be a catch somewhere. I'd like the bacteria where you can have ice cream every day and stay thin (DH apparently has it, why not me?)

You know, I knew there had to be a catch somewhere. I'd like the bacteria where you can have ice cream every day and stay thin (DH apparently has it, why not me?)

DS17 just got back from 3 weeks of camp in South Dakota, a long and anxious (for me) way from NY. Usually when he is away for this long, the first week we get no communication except terse texts like, "Yes, I'm having fun. I can't talk, I'm busy." By the end of the 2nd week we start to see increasingly more complaints about others at the camp and by week three it is usually that he has some horrible malady (usually yeast related due to excessive ice cream consumption.) But this year it was different. Weekends were spent at a working, organic/holistic farm where he helped walk the goats (not clear exactly, but I'm just the reporter) and made scrambled eggs with eggs "right out from under the chicken's butt". DS (and his Mom) are city persons and DS has never lived anywhere out of the sound of the subway, so I think it was a revelation for him about other ways of living and other kinds of success. In any case, my point is that even though it is anxiety producing to send them away, they often come back with really good insights and helpful new experiences (and yeast infections!)

You know, I agree that there are behaviors that our kiddos just can't control. But on the other hand (and I am channeling DH here) there are some behaviors that can't be permitted. For us this was distracting the driver (or grabbing the wheel) and hitting the parents (mostly me.) Where we are (and this is fluid) is that we pick our battles, and for those things we can't permit, we make the penalty truly terrible (e.g. losing his phone for the weekend, shudder, gasp.) But then, if that works, and it does for the most part, doesn't that beg the question, if he can control these things, why not everything? My answer, not vetted with the rest of the household, is that the energy expended to not do the terrible things (made worse by the strong temptation to do them because they are terrible) is so great that if everything else were added on, life as we know it would grind to a halt.
 
But I still don't like any of our answers. This is a continuing question for us and as a result our policies are not consistant (bad). But we are only human, and doing our best. If anyone finds a magic bullet, kindly let me know!

OK, so rereading, DS is homozygous for VDR taq, BHMT-08, and CBS A360-A, and heterozygous for MTHFR C677T, a couple of COMTs, a couple of MTRRs, a few more of the BHMTs and SHMT C1420T. The treatment for these is to go on an animal protein-free diet (oh how popular I will be in my house) and supplementing with a number of different vitamins. I am supposed to take care of the CBS first although this CBS mutation is not the worst one. (yay?) This is quite complicated.

So as I sort of expected, DS17 has both CBS and BHMT hetero mutations, hence the failure of my attempts to give him "nice soothing epsom salt baths" that turned him into a furious ball of anger looking for a target. He has a bunch of other mutations too, some of which require conflicting support (both push and restrict taurine, for example.)
 
I really wish there was a doctor where you could just go up to them and say, "Here are DSs 23andme results, please tell me what to do," and he would know, as opposed to asking what I want to do. (What I want to do is have several large gin and tonics, but that doesn't seem helpful to anyone but me.) I know that I need to go to all of the references that LLM has very very helpfully provided and read through them and figure it all out, (and then break through DH's wall of denial and disbelief) and I will do that, but is there actually a doctor anywhere near NYC or available on Skype who can work with me on this?
 
OK, whine is over. I should actually be happy, since now I have an actual clue as to what is going on, and that puts me ahead of 90% of the doctors that I have worked with!
 
Thanks to all the hardworking people on this board who figured this out (LLM) and who fearlessly post about it so the slower of us can catch up and get it!
 
Lynn