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Everything posted by lynn

  1. Requirements at NYU, where DS is (amazingly) starting this year: For MMR, either: MMR immunizations on two different dates; the three immunizations separately; evidence of titers; a doctor's note saying immunization is not a good idea; or religious exemption. For Meningitis, you just have to have the immunization unless you are over 21 and not dorming.
  2. So looking at Amazon and other sites, I see three types of hemp oil. One is just hemp oil that could be used like fish oil for essential fatty acids and costs about $15. The second is "mildly" enriched with CBD (about 100mg in the whole bottle) and costs about $40. The third is highly enriched (about 500 mg in a bottle) and costs over a hundred dollars. So I'm assuming that you are using the third type? How many drops are you starting out with? I'm thinking that if I wanted to try this with DS, I could start out with the $40 bottle and use slightly more drops to start?
  3. With regard to taurine, when I gave it to DS many years ago, I found it made him much calmer, however it increased his tics by a frightening amount (tried stopping and restarting several times because it was so irritating that something that helped also messed things up so bad.) Same is true of fish oil in any guise whatsoever--they all help his attention, mood, and accuity, but they all turn him into a ticcing mess. Low and slow, and I 100% agree with the comment that you can be skipping along, thinking you are helping, and then find that your "best" supplement is the one that is causing the new problem. Really wish that if DS had to have this problem, he could have been born about 15 years later so that research would have figured out how to deal with it. Of course, then I would be even older than I am now...
  4. 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.
  5. DS (now 18) went through a horrible math decline from about 9th grade on, and the horrible part was that the math sequence he was in, at the high school he was in, allowed no deviation from the geometry, algebra 2, pre calc, calc path. Just at the end of this semester (senior year) he has started to come out of it. Don't know if the decline was caused by anxiety, or the anxiety was caused by math decline, but for a while he had to act out extensively before he could even sit down to attempt homework. A lot of the acting out had to do with me, so I had to get a tutor for him and he has pretty constantly had a series of very calm, patient tutors for the whole 4 years. He hasn't failed anything, but that was bought with a whole lot of stress. This last set of calc finals though, he got an 86 (after systematically failing all tests and quizes this year.) He actually let me review with him, and I was astonished at what he knew and what he could do--calm and systematic. What changed? Could just be time (DH, the skeptic's, take). Could be the methylation supps DS added this summer (molybdenum, DMG, hydroxy B12--extra credit if you can immediately figure out what mutations he has ) Could be clonidine that we added last summer. Could possibly be sarcosine powder that supposedly helped with OCD in research trials, although I found that if I add the dose that was used in the trials, it results in intense anger. Lower, as always, is better. Could be improved therapy. But he isn't out of the woods by a longshot. Just wanted to agree with the previeous posters who found that the knowledge is there once the evil PANS demons are banished.
  6. Sorry I am late to this topic but I just want to add that having a 504 in place since middle school is very important for concerns later on. For instance, if you need extra time for the SAT and ACT, having a 504 in place is a key piece of getting that. Also, if the sky suddenly falls in, like it did for DS last year, the school has much more latitude to do things like give credit, but no grade, for a class when the child gets too anxious to take the final (curse you pre-calculus). I found that the teachers were very good about making sure that DS got to use the accomodations that he gets (as much extra time as he needs, extra bathroom breaks to let out tics, no penalty for handwriting/alphasmart available.)
  7. Just got back my results from 23 and me. DH's got stuck in the machine and haven't come out yet. Very interesting--for one thing, I am the one with the homozygous MTHFR mutation (yikes! who would have known? where did I put that methyl folate?) But the main very interesting thing is how apparently my fairly minor pile of mutations and what must be DH's fairly minor mutations came together to form a child who has homozygous problems in almost every ring in that ubiquitous circle-y Methyl system diagram. Sort of makes me think back to that thread a while ago where we discussed how many of the parents of our kids are math-oriented/gifted. OH well. At least now I have a potential reason for why I had all those miscarriages back in the old days.
  8. 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?)
  9. It is sort of an old technology but DS has an Alphasmart. This is a self contained word processor keyboard. It does not connect to the internet but can be downloaded by wire connection to a computer. While this sounds funky, it is actually very useful because schools recognize that it is quite hard to cheat with it. As part of his 504, DS used it for the essay portion of Regents tests all through High School (actually at the request of his English teacher, who felt that the grading teacher would never be able to figure out what he had written.) Very useful for those with small motor deficits.
  10. My DS is 17 and I have to say that as you get into high school, it is really important that they get at least the concept of owning their own future. DS is going into his Senior year and it has been touch and go whether he would get this far (Sophomore year we pulled him out for the month of January and dragged him to Florida for ERP--they also made it clear that nothing good was going to happen to him unless he made it happen.) Part of the equation is indubitably getting rid of the medical problems, but I agree that as he climbs out of the swamp, he will drag his icky learned behaviors with him unless you are your evil twin mother and kick them back to where they came from. This includes everything from being allowed to be in charge of getting up on time to being in charge of not letting his temper make him say unwise things to his father. You do start to see the difference between a child that is so deep in exacerbation that he can't do anything and a child that sort of (in a way) enjoys the hard work of learning how to run his life himself. I've seen this sometimes. Hope we all get there for real.
  11. For DS the constant gas went away when we ditched dairy (also helped me!) Still has the distended tummy though, and has since he was a baby.
  12. 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!)
  13. I read in the article below that the SLC1A1 gene at a specific SNP is highly associated with OCD and is associated with glutamate transport. DS has the SNP at +/+ according to 23 and Me. Give me some belief that DS's problem could be glutamate based. I had thought not because of the spectacular failure of NAC (screaming maniac.) However, 23 and Me has an answer to that also, which is that he has multiple CBS and BHT abnormalities that might make the sulfur in NAC problematic. For those who have tried them, is there a positive or negative to pushing for Memantine, Riluzole, Amantadine? Might see if DS can give them a try, although our new doc is going in a different (and possibly hopeful) direction. The article: Influence of polymorphisms in genes SLC1A1, GRIN2B, and GRIK2 on clozapine-induced obsessive-compulsive symptoms. Cai J, Zhang W, Yi Z, Lu W, Wu Z, Chen J, Yu S, Fang Y, Zhang C.
  14. DH and cousin chem/mechanical engineers. My 2 brothers engineers (electrical/civil) along with maternal grandfather (ran a hydro plant in the 1930s) I myself am an engineer. Other than that, nothing. DS with PANDAs used to be very good at math, now struggling due to anxiety.
  15. 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!
  16. Re: magnesium--there are a lot of antibiotics that you should not give with any minerals including magnesium and zinc. Not all antibiotics are affected, though, and I don't have the list. Re :GABA --I am giving something like 1/4 or 1/5th of a 500 mg capsule. I never give the full strength starting out because DS is a sensitive reactor and I have had amazingly bad reactions so I want to keep the damage as small as possible!
  17. MKUR--My son has always had weird sleep issues--he will be actually talking and fall asleep, but it takes him forever to fall asleep at night. I always thought that it was just an avoidance thing, but maybe I'm wrong. Very interesting. QM--what form of magnesium do you use. Magnesium citrate seems too laxative, don't know what else is absorbed best without messing things up. LLM--I have also started zinc again, maybe a few months ago. This may also be factoring in. Still all good. Turning blue from breath holding, but still holding breath!
  18. Thanks PR40, did you have any indications that your kids were sensitive to methyl donors? Also, if you started at 1000 mcg, what did you drop down to? LLM--I agree, not only am I not rocking the boat, I am lying on the bottom of it holding my breath! I am afraid (since I have seen it so often) of the honeymoon period leading to horrible results as some other unexpected mechanism kicks in. I guess my question is this: Everytime I see GABA mentioned on the boards, there seems to be a lot of unrest and feeling that it does not good. Has it actually helped anyone? For a long time? Or is it another thing that just helps for a day or two and then makes things worse?
  19. I did the 23 and me testing and found results I have posted elsewhere, but one of the recommendations I saw in the Yasko/Heartfixer documents was to try GABA at 500mg/day to soak up glutamates. Since most of the rest of the recommendations for DS's SNPs were slower to work on (finishing on the 12th of What The Heck are You Thinking in the case of DS, DH, and meat restriction) I decided to give the GABA a whirl. I used about a fifth of the capsule (or about 100 mg) and gave it to him with am vitamins for the last 3 days. He had both a major spanish project and a research paper due this weekend and had done nothing on either because of anxiety and wheel spinning. I expected the weekend to be hideous, including having to give him a lot of support on both projects, DS constantly starting fights with DH to divert from what he needed to do, etc. Instead, what happened was that DS barricaded himself in his room, found and read all his sources, came out and used the computer in the living room to put together his Spanish project, went back into his room and made the outline, and only at the end of Sunday asked me to type the final paper to his dictation. Even then, he was totally organized with all his sources, and simply told me what to type. He tried to start one fight with me, then stopped and said, "This break has lasted too long, that's why I'm fighting. Excuse me I have to get to work. Only those who know how this usually works with DS would realize what an incredible, miraculous weekend I had. So here is what I have done besides the GABA that might be helping. 1. He had been on risperdone and zoloft 200mg. We tapered him off risperdone due to weight gain and it seems like that made the wheels come off for him. But I thought (and the psychiatrist didn't) that the risperdone had been hiding the bad effects of the zoloft. So a couple of weeks ago I started cutting the Zoloft very slowly. Now he is at 150 mg. 2. I had stopped magnesium for some reason and I started it again. Those and the GABA are the only suspects. I really like this new child and want to encourage him, so I am afraid to change anything even though there are still substantial gains to be made. Any thoughts?
  20. 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.
  21. Just wanted to say that I really preferred RMDH to a hotel. I think it is because it puts things in perspective (lots of kids in wheelchairs....) but it also reduces stress immensely. You know you will have simple tasty dinners (and breakfast and lunch are always available to make for yourself too), you know your room is clean and safe, it is a family setting. It was sort of a time out of time for us. DH came too, but there were a lot of families where only one parent was there or they alternated.
  22. 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
  23. We went to the Dali museum (free to RMH). It was fascinating--DS got a t-shir of the giraffes with their hair on fire that is quite the conversation piece. Also, if it works out you could drive to Cape Canaveral and see a rocket launch -- we did that and it was very cool. One tired mom, keep trying, it took me a few tries also. I think the clerical folks get overwhelmed.
  24. Just want to say that I made DS ride the PATH train with me to New Jersey so he could spit in the test tube there and I could mail it. Just another fun thing about living in New York.
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