lynn

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.

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?

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...

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.

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.

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.)

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.

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?)

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.

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.

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.

DS is AG

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!)

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.

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.