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Melissa in Australia

ideas needed cross posted

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16 hours ago, Pen said:

 

I guess it depends on your set up and situation.  🙂 

asd and FASD probably have some overlap, but also have significant differences.

 

the point of the base was primarily maintaining adults in control - not child self calming   

 

https://sites.duke.edu/fasd/chapter-6-the-fasd-student-and-behavioral-issues/

 

thank you for the link. I found the information helpful

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20 hours ago, Storygirl said:

Perhaps write down the house rules that they are to all follow while the helper is there. And then the first thing the worker does each time is go over the rules.

Love this idea. Will do this

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4476607/

good article, IMO, re medications and supplements...    (I’d perhaps try choline (part of BComplex iirc) and maybe vinpocetine with FASD.   based on the studies mentioned in the article.) There doesn’t appear to be research showing that most medications for LD type stuff work.  I think I saw one possible positive indication for Risperidine short term adjunct to therapy but not clear, and not sure I remember that right.  A lot of typical (adhd etc) meds appear in clinical trials to make FASD worse. 

I’d probably be looking at what tends to help with neuron damage for other reasons (TBI, MS, etc) ...  and what perhaps could be used by body to build nerves, remylenate. Etc.

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4 hours ago, Pen said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4476607/

good article, IMO, re medications and supplements...    (I’d perhaps try choline (part of BComplex iirc) and maybe vinpocetine with FASD.   based on the studies mentioned in the article.) There doesn’t appear to be research showing that most medications for LD type stuff work.  I think I saw one possible positive indication for Risperidine short term adjunct to therapy but not clear, and not sure I remember that right.  A lot of typical (adhd etc) meds appear in clinical trials to make FASD worse. 

I’d probably be looking at what tends to help with neuron damage for other reasons (TBI, MS, etc) ...  and what perhaps could be used by body to build nerves, remylenate. Etc.

I found that article very interesting. Thank you.

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8 hours ago, Pen said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4476607/

good article, IMO, re medications and supplements...    (I’d perhaps try choline (part of BComplex iirc) and maybe vinpocetine with FASD.   based on the studies mentioned in the article.) There doesn’t appear to be research showing that most medications for LD type stuff work.  I think I saw one possible positive indication for Risperidine short term adjunct to therapy but not clear, and not sure I remember that right.  A lot of typical (adhd etc) meds appear in clinical trials to make FASD worse. 

I’d probably be looking at what tends to help with neuron damage for other reasons (TBI, MS, etc) ...  and what perhaps could be used by body to build nerves, remylenate. Etc.


Again, not encouraging medication, just interested in this line of discussion.

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics.  That doesn't mean they can't ever be used, but I'd suggest being super cautious.  The complex kids I have seen who have responded to meds usually are medicated by a psychiatrist (not a pediatrician) with medication that matches the symptom(s) that is currently causing the greatest difficulty.  So, for example, a kid who is really disregulated and aggressive might get Risperdal or another atypical antipsychotic.  A kid with mood swings may get a mood stabilizer.  And a kid with difficulty with sleep that's contributing to impulsivity during the day might get Clonidine.  Of course, many kids have multiple symptoms, but it's not uncommon for one symptom to be the one that pushes the parent to try medication. 

However, I haven't worked with many kids for whom FASD is the only issue.  Most of the kids I've worked with who have confirmed FASD have either been parented by someone who is using heavily, or have experienced multiple separations and disruptions in care, or have been institutionalized.  These things leave scars on kids, such as PTSD or RAD.  In addition, many of the kids I've seen with FASD have either been exposed to other substances in utero, or have birth parents who are dually diagnosed and also have diagnosed or undiagnosed conditions like bipolar that can be inherited.  Given all that, it's hard to sort out whether they FASD that mimics a mood disorder, or FASD and a mood disorder, or FASD and PTSD (although sometimes specific symptoms like flashbacks can make that more clear) rather than FASD that mimics PTSD.  

Finally, I want to be clear that I'm not saying that there's some medication that will magically improve thinking, teach kids cause and effect, and cure behavior problems.  The changes I have seen have been small but significant changes.  The kid who previously went from 0 to 100 in a hearbeat, might give you a few seconds warning, which lets you move siblings or classmates to safety.  Or the kid who could be trusted to sit for 30 seconds with a fun activity, can now last 3 minutes, which means mom can pee.  

Again, my kid is off psychotropic meds due to side effects.  So, I am certainly someone who sees both sides.  

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8 minutes ago, CuriousMomof3 said:

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics. 

The thing is, it's pretty predictable if you run genetics.

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10 minutes ago, CuriousMomof3 said:


Again, not encouraging medication, just interested in this line of discussion.

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics.  That doesn't mean they can't ever be used, but I'd suggest being super cautious.  The complex kids I have seen who have responded to meds usually are medicated by a psychiatrist (not a pediatrician) with medication that matches the symptom(s) that is currently causing the greatest difficulty.  So, for example, a kid who is really disregulated and aggressive might get Risperdal or another atypical antipsychotic.  A kid with mood swings may get a mood stabilizer.  And a kid with difficulty with sleep that's contributing to impulsivity during the day might get Clonidine.  Of course, many kids have multiple symptoms, but it's not uncommon for one symptom to be the one that pushes the parent to try medication. 

However, I haven't worked with many kids for whom FASD is the only issue.  Most of the kids I've worked with who have confirmed FASD have either been parented by someone who is using heavily, or have experienced multiple separations and disruptions in care, or have been institutionalized.  These things leave scars on kids, such as PTSD or RAD.  In addition, many of the kids I've seen with FASD have either been exposed to other substances in utero, or have birth parents who are dually diagnosed and also have diagnosed or undiagnosed conditions like bipolar that can be inherited.  Given all that, it's hard to sort out whether they FASD that mimics a mood disorder, or FASD and a mood disorder, or FASD and PTSD (although sometimes specific symptoms like flashbacks can make that more clear) rather than FASD that mimics PTSD.  

Finally, I want to be clear that I'm not saying that there's some medication that will magically improve thinking, teach kids cause and effect, and cure behavior problems.  The changes I have seen have been small but significant changes.  The kid who previously went from 0 to 100 in a hearbeat, might give you a few seconds warning, which lets you move siblings or classmates to safety.  Or the kid who could be trusted to sit for 30 seconds with a fun activity, can now last 3 minutes, which means mom can pee.  

Again, my kid is off psychotropic meds due to side effects.  So, I am certainly someone who sees both sides.  

the twins also have all the highlighted. they are not violent at all,   and with all the work that the whole team of professionals have been doing ( plus our family) they can now last up to 5 minutes and if they ave r very engaged almost 20 minutes on an activity - especially if they are redirected by gentle taps on the arm etc.

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1 minute ago, Melissa in Australia said:

the twins also have all the highlighted. they are not violent at all,   and with all the work that the whole team of professionals have been doing ( plus our family) they can now last up to 5 minutes and if they ave r very engaged almost 20 minutes on an activity - especially if they are redirected by gentle taps on the arm etc.

 

That was why I was surprised when you said they didn't have anything concurrent with FASD.  Because I thought I'd read something in the archives that implied a complicated background.

That's awesome that they're doing so well.  I didn't mean for my comments about aggression to be connected with your kids.  Of course, I don't know them at all!  I was just responding to a question I'd had about which meds had I seen kids with FASD respond to, and to the article posted.  

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1 hour ago, Melissa in Australia said:

the twins also have all the highlighted. they are not violent at all,   and with all the work that the whole team of professionals have been doing ( plus our family) they can now last up to 5 minutes and if they ave r very engaged almost 20 minutes on an activity - especially if they are redirected by gentle taps on the arm etc.

 

Of the FASD children I’ve met and known that they had FASD, only one has had violent tendencies.  

If anything the ones I have met have tended to be the opposite— overly and indiscriminately “loving” — touchy-feely , lacking a sense of close friend versus stranger, and so on.   

I am currently dealing with the son of our friends who wants a closer friendship with my son than my son wants right now, who is calling me maybe 6 times per day, my son, I guess, even more than that...  

Trying to negotiate between my son’s feelings, the other boy’s, his family...  I’ve ended up talking with the other boy quite a bit lately.

It’s complicated. 

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27 minutes ago, Pen said:

 

Of the FASD children I’ve met and known that they had FASD, only one has had violent tendencies.  

If anything the ones I have met have tended to be the opposite— overly and indiscriminately “loving” — touchy-feely , lacking a sense of close friend versus stranger, and so on.   

I am currently dealing with the son of our friends who wants a closer friendship with my son than my son wants right now, who is calling me maybe 6 times per day, my son, I guess, even more than that...  

Trying to negotiate between my son’s feelings, the other boy’s, his family...  I’ve ended up talking with the other boy quite a bit lately.

It’s complicated. 


The kids I've known have been pretty varied.  Definitely some kids with aggression, some kids more like you describe, and some kids with a combination of both.  I used aggression as an example because it's something that would make me consider medication more quickly than some other issues.  But, my experience is also skewed because before I had my oldest, I had the reputation as the teacher who would welcome any kid, so the kids I taught often represented the more challenging end of the behavioral spectrum for their disorder, at least when they started.  
 

Edited by CuriousMomof3
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1 minute ago, Melissa in Australia said:

4 years


That's wonderful.  We're still at the very beginning of our adoption journey. My son came to us 7 months ago.   I hope that 3.5 years from now, I'll feel like we've got a plan that's working the way yours clearly is.  

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3 hours ago, CuriousMomof3 said:


Again, not encouraging medication, just interested in this line of discussion.

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics.  That doesn't mean they can't ever be used, but I'd suggest being super cautious.  The complex kids I have seen who have responded to meds usually are medicated by a psychiatrist (not a pediatrician) with medication that matches the symptom(s) that is currently causing the greatest difficulty.  So, for example, a kid who is really disregulated and aggressive might get Risperdal or another atypical antipsychotic.  A kid with mood swings may get a mood stabilizer.  And a kid with difficulty with sleep that's contributing to impulsivity during the day might get Clonidine.  Of course, many kids have multiple symptoms, but it's not uncommon for one symptom to be the one that pushes the parent to try medication. 

However, I haven't worked with many kids for whom FASD is the only issue.  Most of the kids I've worked with who have confirmed FASD have either been parented by someone who is using heavily, or have experienced multiple separations and disruptions in care, or have been institutionalized.  These things leave scars on kids, such as PTSD or RAD.  In addition, many of the kids I've seen with FASD have either been exposed to other substances in utero, or have birth parents who are dually diagnosed and also have diagnosed or undiagnosed conditions like bipolar that can be inherited.  Given all that, it's hard to sort out whether they FASD that mimics a mood disorder, or FASD and a mood disorder, or FASD and PTSD (although sometimes specific symptoms like flashbacks can make that more clear) rather than FASD that mimics PTSD.  

Finally, I want to be clear that I'm not saying that there's some medication that will magically improve thinking, teach kids cause and effect, and cure behavior problems.  The changes I have seen have been small but significant changes.  The kid who previously went from 0 to 100 in a hearbeat, might give you a few seconds warning, which lets you move siblings or classmates to safety.  Or the kid who could be trusted to sit for 30 seconds with a fun activity, can now last 3 minutes, which means mom can pee.  

Again, my kid is off psychotropic meds due to side effects.  So, I am certainly someone who sees both sides.  

 

Logic says it must be true that FASD and PTSD will often overlap due to either being stressed by moves out of original household or very often addictions and results of that if still in the original household.  But I’m not sure that psychotropic pharmaceuticals  are particularly useful for PTSD either, though I know a couple are specifically approved for it. (Unlike with FASD where it isn’t clear to me that any drug is approved for FASD in USA) 

I certainly admit to a strong bias in favor of vitamins, nutraceuticals and nootropic supplements if something like that is used at all. 

 

More FASD films— what at least these people feel — and hopeful to see progress, I think

 

 

 

 

An alternative view on ADHD Scattered: How Attention Deficit Disorder Originates and What You Can Do About It https://www.amazon.com/dp/0452279631/ref=cm_sw_r_cp_api_i_kLLqDbGB6VQQG

 

Not sure these links would work for others: 

Scattered Minds #hoopladigital
https://www.hoopladigital.com/title/12315241

Scattered #hoopladigital
https://www.hoopladigital.com/title/11556076

 

ADHD has a far better track record of showing usefulness of psychotropic pharmaceuticals. But the author above , Mate, who has ADHD as do 3 of his kids is questioning whether pharmaceuticals is really the right approach...

What he seems to think is the right approach fits well with what Myles, in the long video a few posts ago, said he needed, but could not express his need.  As best I understand the videos and the book.

 

Mate has his own videos too btw.  

 

Puryear whose book was helpful to me with ADHD ish struggles also tended to be more on the non Rx side.  Though Hallowell whose work I also appreciate tends to be more pro Rx.  

 

I’d like to see some of Amen’s  Spec scans to see if the brain shows healing after Pharmaceuticals. 

Edited by Pen
No diagnosed adhd so added ish. And nutraceuticals
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7 hours ago, Pen said:

 

Logic says it must be true that FASD and PTSD will often overlap due to either being stressed by moves out of original household or very often addictions and results of that if still in the original household.  But I’m not sure that psychotropic pharmaceuticals  are particularly useful for PTSD either, though I know a couple are specifically approved for it. (Unlike with FASD where it isn’t clear to me that any drug is approved for FASD in USA) 

I certainly admit to a strong bias in favor of vitamins, nutraceuticals and nootropic supplements if something like that is used at all. 

 

More FASD films— what at least these people feel — and hopeful to see progress, I think

 

 

 

 

An alternative view on ADHD Scattered: How Attention Deficit Disorder Originates and What You Can Do About It https://www.amazon.com/dp/0452279631/ref=cm_sw_r_cp_api_i_kLLqDbGB6VQQG

 

Not sure these links would work for others: 

Scattered Minds #hoopladigital
https://www.hoopladigital.com/title/12315241

Scattered #hoopladigital
https://www.hoopladigital.com/title/11556076

 

ADHD has a far better track record of showing usefulness of psychotropic pharmaceuticals. But the author above , Mate, who has ADHD as do 3 of his kids is questioning whether pharmaceuticals is really the right approach...

What he seems to think is the right approach fits well with what Myles, in the long video a few posts ago, said he needed, but could not express his need.  As best I understand the videos and the book.

 

Mate has his own videos too btw.  

 

Puryear whose book was helpful to me with ADHD ish struggles also tended to be more on the non Rx side.  Though Hallowell whose work I also appreciate tends to be more pro Rx.  

 

I’d like to see some of Amen’s  Spec scans to see if the brain shows healing after Pharmaceuticals. 

 

We’ve used meds for specific PTSD symptoms, with limited success that has bought us some critical space, particularly with respect to nightmares and insomnia and generally being terrified of sleep.  

We mostly used it in the hospital, just because of other medical issues that complicate things.  Respiratory depression, and overloading his liver are the problems that made us stop.  But I would say that it was useful, and is probably a tool we’ll use again.  

 

 

 

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@Melissa in Australia  I wanted to apologize again, because I feel like I keep pulling this back to the question or “are there kids with FASD or PTSD who are helped by psychotropic meds?” Which is, of course an entirely different question from “Do Melissa’s kids need meds?”, but it must feel like that a little.  None of what I posted is intended to answer the second question,  

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Op says the kids were brandishing knives. That is end of the line. Safety goes to the top of the list. If their social thinking does not allow them to realize that's NOT AN OPTION, then they need something that keeps them safe and keeps their workers safe, something that works. There is no intervention when the worker is worried about their safety. Make safety the TOP priority and then everything else will fall into place. So the only real question with op's ds is whether it was impulsivity (which it sorta sounded like) or aggression (my ds). And then for impulsivity it's ADHD meds or a trial of tyrosine has research behind it, so you could try it, sure. But that would be super short leash. No one can work effectively with kids till they are SAFE to work with. And if op is like 80,000 things are happening and I don't know where to start, well SAFETY is where you start.

Safety is body calm so someone can work with you. Safety is ability to communicate independently so you can self-advocate for what you need or for problems you're having. My ds was not safe with his narrative language deficits, because he couldn't tell me what happened, if someone had abused him. Working on narrative language is part of safety. But don't think of it in terms of 80,000 things. Start with SAFETY. It's a big movement in one of the autism communities in a major city near us. They have a safety council and have been putting on all kinds of stuff. It was when I finally realized the connector between a lot of my worries for my ds. They all boiled down to SAFETY. So now I go into IEP meetings and I say THIS HAS TO BE A GOAL BECAUSE WITHOUT IT MY DS ISN'T SAFE. Everything flows back to safety. Safety for the worker, safety for the dc. 

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40 minutes ago, PeterPan said:

Op says the kids were brandishing knives. That is end of the line. Safety goes to the top of the list. If their social thinking does not allow them to realize that's NOT AN OPTION, then they need something that keeps them safe and keeps their workers safe, something that works. There is no intervention when the worker is worried about their safety. Make safety the TOP priority and then everything else will fall into place.


I agree 100% that safety comes first, but Melissa has talked about lots of strategies that she's put in place for safety, and it sounds as though, other than the first session with this worker, those strategies are working.  

40 minutes ago, PeterPan said:

So the only real question with op's ds is whether it was impulsivity (which it sorta sounded like) or aggression (my ds). And then for impulsivity it's ADHD meds or a trial of tyrosine has research behind it, so you could try it, sure. But that would be super short leash. No one can work effectively with kids till they are SAFE to work with. And if op is like 80,000 things are happening and I don't know where to start, well SAFETY is where you start.

Safety is body calm so someone can work with you. Safety is ability to communicate independently so you can self-advocate for what you need or for problems you're having. My ds was not safe with his narrative language deficits, because he couldn't tell me what happened, if someone had abused him. Working on narrative language is part of safety.

This is huge.  Kids with disabilities are so vulnerable to abuse, both because people count on the fact they can't report, and because they are often in situations where one adult has access to them without capable witnesses.  

40 minutes ago, PeterPan said:

 

But don't think of it in terms of 80,000 things. Start with SAFETY. It's a big movement in one of the autism communities in a major city near us. They have a safety council and have been putting on all kinds of stuff. It was when I finally realized the connector between a lot of my worries for my ds. They all boiled down to SAFETY. So now I go into IEP meetings and I say THIS HAS TO BE A GOAL BECAUSE WITHOUT IT MY DS ISN'T SAFE. Everything flows back to safety. Safety for the worker, safety for the dc. 


 

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1 hour ago, PeterPan said:

Op says the kids were brandishing knives. That is end of the line. Safety goes to the top of the list. If their social thinking does not allow them to realize that's NOT AN OPTION, then they need something that keeps them safe and keeps their workers safe, something that works. There is no intervention when the worker is worried about their safety. Make safety the TOP priority and then everything else will fall into place. So the only real question with op's ds is whether it was impulsivity (which it sorta sounded like) or aggression (my ds). And then for impulsivity it's ADHD meds or a trial of tyrosine has research behind it, so you could try it, sure. But that would be super short leash.

 

 

As a general matter I agree that safety needs top priority.

Melissa thought the knife drawer was locked in a child proof way. Clearly something went wrong with that. (My own observation if that children are often better than adults at getting into “child proof” containment. ) 

Safety and also calm were reasons that the FASD families I knew were using a home base system ( because the Hays had used that successfully with their 11 dc, 9 with FASD and it was a model of success that could be followed   ). The FASD children have very limited ability to keep groups of instructions in their head.  So an “always be at the home base table area” basic rule was something the FASD children could handle and be okay with—  unless specially told to do something else (which would be just one thing at a time with guidance, so as  not to overload them ) was manageable.  

 

I lost the link for the following image, but you can find it and others similar to it if you Hoogle FASD brain images. Despite such similar acronym letters as ASD, it isn’t the same thing.  Despite often similar behaviors to adhd it isn’t the same thing. 


 

What is Fetal Alcohol Syndrome

There’s damage to brain.  It isn’t always (probably not even usually) that hugely visible on scans.  But alcohol damages brains. Neurons. There is damage to myelin sheathes of nerves, almost always in FASD, as I understand it.  (The film Jackie and Hilary  (Or reverse?) might be interesting to show a depiction of mental and behavior changes happening with someone with demyelination due to MS happening— that also may look like ASD or ADHD but isn’t.) 

 

I think saying here’s what worked for my child with ASD and ADHD so that’s what you need (Melissa needs) to do for your (her) child may be a very wrong approach with regard to FASD .  

Yes, there’s a lot of great research about Tyrosine and ADHD .  But while FASD outer symptoms may resemble ADHD they are not the same.  There is afaik currently Zero research  to show that Tyrosine would help with FASD .  Maybe it would.  Maybe it’s safe enough to experiment with.  Or not.  I’d certainly want to very carefully research what is known about its effects in children with FASD before trying it. Perhaps To research what’s known about increasing dopamine in children with FASD . 

OTOH there is some very excellent research to show that Choline  is likely to help (you can probably google scholar it) in FASD (though more so showing it to help hugely at around age 3 and younger) and it would be far more worthwhile imo in going to what has research behind it for the condition that the dc seem to have. Rather than to treat them for something that helps a different thing that someone else’s child has.   Or at least I personally would look at nutraceuticals that seem to help FASD and other conditions with similar underlying damage.  As well as perhaps “anti-alcohol antioxidants “ and other such things. 

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Safety isn't just locking away the knives. If the kids' mental health is unstable, bodies unstable, something is unstable, ANYTHING could be the next weapon. It's about making their bodies safe so they can be worked with. 

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3 hours ago, CuriousMomof3 said:

 

We’ve used meds for specific PTSD symptoms, with limited success that has bought us some critical space, particularly with respect to nightmares and insomnia and generally being terrified of sleep.  

We mostly used it in the hospital, just because of other medical issues that complicate things.  Respiratory depression, and overloading his liver are the problems that made us stop.  But I would say that it was useful, and is probably a tool we’ll use again.  

 

  I hope his liver is okay.  

Respiratory depression sounds pretty serious. 

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On 7/31/2019 at 4:10 AM, Melissa in Australia said:

thank you for the link. I found the information helpful

 

https://canfasd.ca/wp-content/uploads/sites/35/2016/05/Issue_sheet_-_FASD_and_Nutrition-Final.pdf

Re FASD and nutrition / supplements 

Choline, omega 3 fatty acids, and some vitamins are mentioned as showing promise

 

Maybe check all the B vitamins as many have neurological benefits  ?     “Good” fats to try to give building blocks for myelin repair ?  Choline relates to myelin, and maybe look at Alpha  CDP form of choline which can cross blood brain barrier iirc (anyway that’s one form I take from double wood or a company with name similar to that— also a NOW inositol/choline combo— nowadays one can make one’s own gummies if children need that — that is, if you decide you would want to try some but pills can’t be swallowed)

(btw some of the supplements that may be helpful with FASD may overlap with what may be helpful with chemical issues because there’s a toxic exposure problem in common ... if you are from the Australian WTM family with chemical sensitivity , but that might have been someone else) 

 

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25 minutes ago, PeterPan said:

Safety isn't just locking away the knives. If the kids' mental health is unstable, bodies unstable, something is unstable, ANYTHING could be the next weapon. It's about making their bodies safe so they can be worked with. 

 

Were they being used as weapons? 

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On July 30, 2019 at 3:16 AM, Melissa in Australia said:

they were pulling knives out of the ( supposedly childproof) knife draw and running around with them .

Pen asked about whether the knives were being used as weapons, which seems sort of rhetorical to me. You can construe motive or thought process all you want, but it's horribly dangerous and is NOT about the mom locking up or not locking up knives perfectly. That's the issue with that Mate book Pen linked, that it goes back to BLAME THE MOM, which is what the ps did with us. It gets so old.

People who are thinking clearly do not run after other people with knives.

So you can so it's social thinking deficits, impulsivity, boyish play (I don't buy that), boredom, attention seeking, whatever you want. It's still internal to them.

Look, a couple years ago I was describing behavior of my ds, and Pen was like he's going to be a psychopath. It wasn't a very *nice* thing to say, but I actually started getting ANSWERS when I opened my mind up to that, when I thought long and hard about what things really meant, when I read the research on it. We ran genetics and I now have a stable ds who can receive instruction and not harm anyone and has a new internal standard to where he KNOWS that's not acceptable. He couldn't receive any of that instruction before.

So blaming Mom doesn't help, making it sound like it's the worker's fault doesn't help. It's the kids, plain and simple. It's internal to them. When you move from blaming yourself to figuring out what's actually going on, then you can get real answers.

The way our licensed social worker behaviorist put it was "We get the body calm so they can receive the good instruction they're being given."

So I don't know why the boys were running after each other with knives, but stable, calm people don't do that. We can get really flooded with all the problems, all the concerns, and I'm saying that's where I'd start, getting their bodies calm so they can receive the good instruction. Meds, supplements based on genetics, plenty of options. But it has to work. That home worker does not want to work under conditions like that. If she doesn't quit immediately, she may quit soon.

I'm all on board with trauma therapy, trauma-informed interventions, the environment playing a part, the home (poverty, stress, etc.) playing a part. I don't disagree with Mate's book on that. But I'm just saying the FLIP SIDE is blame the mom. It's what happened to us and it obscures the point that kids are themselves, that they are dealing with their internal issues, that not everything is mom's fault.

If these kids have some serious diagnoses going on, do they have a case worker, coordinator, behaviorist, something who is experienced to work at this level? I think talk with your coordinator person and see. In our county the coordinators aren't trained in anything at that level. You have to hire a private behaviorist to get that care. Our county level worker is just ticking boxes for funding and referring. Now they *have* another office in the county that handles more serious stuff. When ds had a growth spurt a while back, we couldn't get him stabilized and we were having some serious discussions. It's kind of hard sometimes to get good help, sigh.

I wish it wasn't that we learn the hard way, but that's how it really is. Op will go through it, figure it out, come to the other side. She'll get banged up, blamed, probably have some fiascos, but she'll get it worked out.

Edited by PeterPan

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2 hours ago, PeterPan said:

Safety isn't just locking away the knives. If the kids' mental health is unstable, bodies unstable, something is unstable, ANYTHING could be the next weapon. It's about making their bodies safe so they can be worked with. 

 

No, but Melissa has described an array of techniques that she uses.  She clearly thinks about their safety when she chooses who they spend time with, and thinks about supervision.  She incorporates lots of sensory and movement and calming activities.  Her kids are in therapies that target self regulation.  I don’t even know her, but just from this thread it’s clear she’s working on building the skills they need to be safe. 

In addition, in my experience some safety concerns for individuals with ID can be more like the safety concerns with younger children.  If you had given either of my typical kids access to the knife drawer at 3  they would have treated them like toys, and so I used strategies to limit access.  Same thing is true with my high school students with ID.  Many of them still needed toddler type safety strategies like holding hands at the street, locking up cleaning supplies, and only using chokeable materials with 1:1 supervision.  Obviously this is concerning, but medication doesn’t solve that problem.  

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I think they should not be able to get at the knives, but “brandish” is sometimes used as a very specific legal term (and can get a kid shot dead by police ). Absolutely it should be stopped.

But there is a disconnect between Melissa saying the twins aren’t violent and the image of them (or one of them) “brandishing” knife as a weapon.  I am looking for clarification.

 

tr.v. bran·dishedbran·dish·ingbran·dish·es
To wave or flourish (something, often a weapon) in a menacing, defiant, or excited way. See Synonyms at flourish.
 
 
 
Was there excited waving ?  Or menacing threat?
Or? 
 

Sometimes people only mean holding a knife in a visible way:

 

A screenshot shows a Crocodile Dundee-inspired character brandishing a knife in an outback scene.

PHOTOCrocodile Dundee character brandishing a knife

SUPPLIED: TOURISM AUSTRALIA

 

 

Edited by Pen
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@PeterPan I am sorry about the response I made to you back when, but from my adoption world perspective what you were describing with your Ds sounded like it could be headed in a really bad direction really fast—and with you yourself potentially in danger.

I’m not getting that same “vibe” from what Melissa has posted.   Whatever was going on it sounded like the situation was within the ability of an older sibling to handle it.  Take away the knife or tell the twin No or however that was done.  

 

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2 hours ago, Pen said:

 

  I hope his liver is okay.  

Respiratory depression sounds pretty serious. 

 

For those people who might find this and not have read anything else about my kid, I should clarify that I have a kid with multiple organ failure.  His liver is healing, there is no permanent damage, but has taken and takes so many meds that increase liver problems that we watch and support it closely.  

His lungs are a mess, but not from psychotropic meds, but they are fragile enough that the tiny contribution from the meds was too much to risk.

So if someone, down the line, is reading this and thinking “Liver and lungs, oh no I am NEVER doing psychotropic meds for my kid.” I would say that if your kid is physically healthy our experience with meds probably doesn’t apply at all.  

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@Melissa in Australia I made an error reporting the choline I use.  It is:

 

Alpha GPC Choline Supplement (Beginner Nootropic for Brain Support, Focus, Memory, Motivation, and Energy) Pharmaceutical Grade, Made in USA (60 Capsules 300mg) https://www.amazon.com/dp/B00XWQSD7G/ref=cm_sw_r_cp_api_i_V3YqDbRPK24NR

 

the other is: 

 

 

 

Another possible interesting article on choline/inositol- but not specific to FASD, 

 

https://www.psychologytoday.com/us/blog/integrative-mental-health-care/201709/inositol-and-choline-in-mental-health-care

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57 minutes ago, CuriousMomof3 said:

 

For those people who might find this and not have read anything else about my kid, I should clarify that I have a kid with multiple organ failure.  His liver is healing, there is no permanent damage, but has taken and takes so many meds that increase liver problems that we watch and support it closely.  

His lungs are a mess, but not from psychotropic meds, but they are fragile enough that the tiny contribution from the meds was too much to risk.

So if someone, down the line, is reading this and thinking “Liver and lungs, oh no I am NEVER doing psychotropic meds for my kid.” I would say that if your kid is physically healthy our experience with meds probably doesn’t apply at all.  

 

But you didn’t consider something like NAC which can help some with anxiety in some people and also can be liver supportive as well as somewhat sleep inducing for some people? 

😌 actually it could well be that in hospital context,  One would be limited to pharmaceuticals that the hospital carries and that insurance would cover... even if wishing to use nutraceuticals 

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4 minutes ago, Pen said:

 

But you didn’t consider something like NAC which can help some with anxiety in some people and also can be liver supportive as well as somewhat sleep inducing for some people? 

😌 actually it could well be that in hospital context,  One would be limited to pharmaceuticals that the hospital carries and that insurance would cover... even if wishing to use nutraceuticals 

 

8 minutes ago, Pen said:

 

But you didn’t consider something like NAC which can help some with anxiety in some people and also can be liver supportive as well as somewhat sleep inducing for some people? 

😌 actually it could well be that in hospital context,  One would be limited to pharmaceuticals that the hospital carries and that insurance would cover... even if wishing to use nutraceuticals 

 

He was in PICU fighting for his life at that point so I wasn’t making the decisions, I was relying pretty heavily on the medical professionals, and struggling with other decisions.

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1 hour ago, Pen said:

https://www.healthline.com/nutrition/nac-benefits 

Could be useful physically and neurologically...  and may be low if food intake is limited for whatever reason...

 

🤣 okay!  I’ll stop trying to share my pro- nutraceuticals stance!!!   Sorry!!!  

Ciao!!!👋🚶🏻‍♀️


I'd love to hear more about nutraceuticals.  It wasn't right for us at the time we did the meds, but that doesn't mean that it's not a great tool for the future.  I have a huge advantage over many parents of kids with disabilities in that most of my kid's calories come from blended foods that I put in his g-tube, so I never have the question of whether my kid will actually eat something.  

Can I suggest that you make a separate thread on that?  Maybe, it's me, and it doesn't bother Melissa at all, but I feel kind of guilty that I have completely hijacked this thread and we're not really talking about her situation any more, which sounds like a challenging one that deserves it's own conversation!

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3 hours ago, PeterPan said:

Pen asked about whether the knives were being used as weapons, which seems sort of rhetorical to me. You can construe motive or thought process all you want, but it's horribly dangerous and is NOT about the mom locking up or not locking up knives perfectly. That's the issue with that Mate book Pen linked, that it goes back to BLAME THE MOM, which is what the ps did with us. It gets so old.

People who are thinking clearly do not run after other people with knives.


I think that all of us are probably looking at the little information we have through our own lens.  I agree with you 100% that people can get really caught up in motive and the question of whether a kid "meant" something, or whether their behavior was "intentional" and it's not usually helpful.  

But I also think that we're all looking at this through the lens of our own experience.   For me, with a strong background with kids with ID, what I pictured was behavior that was very "young".  I don't usually like to use age level descriptions for kids with ID, I think they are rarely helpful, but I do think there is a category of behavior that can be potentially very dangerous in toddlers, that can really only be addressed with supervision and limiting access, and that for kids with ID that stage can continue for a long time.  

My oldest kid went through a phase when he was very small of wanting things that were mine.  He valued things that he could tell I valued, and he'd grab them and run off and try to make his own little dragon hoard of tampons, spoons, cell phones, etc . . . . I can guarantee that if he saw me with a paring knife, and then later had access, he would have run off with it, and of course that would have been very very dangerous, because running with a knife, especially when you aren't that steady on your feet, is a bad idea.  And no, he wasn't thinking clearly at the time, because he was like 15 months old and 15 month olds are hugely irrational.  

That's the kind of behavior I was picturing, and the solution for that kind of behavior isn't pharmaceutical, whether the person doing it is 15 months or 15 years (these are the kids I taught).  Not because it isn't alarming, but because there isn't a medication that addresses it.  I had a 17 year old in my class the last year before my oldest was born who liked to put small brightly colored things in his mouth, which meant that we had to watch him like a hawk.  If I had ever left a handful of pills on the table, for example, they would have been gone and we would have been pumping his stomach.  And it was a huge problem, that created this major safety risk, and severely limited his access to recreational activities.  But if I had responded to it as though he was a 17 year old with an average IQ, by sending him the psychiatrist for CBT and antidepressants to treat his "suicidality" it wouldn't have worked, because it was a totally different behavior.  

I'm not saying that that's what's going on with @Melissa in Australia's kids.  I am just clarifying why, as someone who agrees with you 100% that safety comes first, I feel like I don't have enough information to judge her on the choices she's made to keep her kids safe.  They're alive, and it sounds like they're making lots of great progress, and she's found things that are helping them grow and learn.  So, I have to trust that she's being thoughtful in how she responds.  

3 hours ago, PeterPan said:

So you can so it's social thinking deficits, impulsivity, boyish play (I don't buy that), boredom, attention seeking, whatever you want. It's still internal to them.

Look, a couple years ago I was describing behavior of my ds, and Pen was like he's going to be a psychopath. It wasn't a very *nice* thing to say, but I actually started getting ANSWERS when I opened my mind up to that, when I thought long and hard about what things really meant, when I read the research on it. We ran genetics and I now have a stable ds who can receive instruction and not harm anyone and has a new internal standard to where he KNOWS that's not acceptable. He couldn't receive any of that instruction before.

I am curious about how well genetic testing works for kids whose issues aren't genetic.  FASD, PTSD, and RAD (three diagnoses that have come up on this thread) are all acquired diagnoses, although FASD is different in that it's acquired in utero.   In our case, we were making urgent decisions with a very short time frame, and genetic testing doesn't work at that speed, so I haven't looked into it.  

3 hours ago, PeterPan said:

So blaming Mom doesn't help, making it sound like it's the worker's fault doesn't help. It's the kids, plain and simple. It's internal to them. When you move from blaming yourself to figuring out what's actually going on, then you can get real answers.


Blaming mom doesn't help.  But the other side is that many of our kids do need lots of very carefully built structure, and that structure often comes from parents.  And often the "ideal" level of structure is something that isn't actually possible.  And when something happens, there's often a progress of reviewing the incident and figuring out where the gap in structure was, and asking "is this a gap we just need to live with, or is this something where we need to shift resources, and prevent future incidents?"  That can easily become blaming, but it doesn't have to be blaming.  It sounds like Melissa's doing that.  She's considering whether she should be present during their early sessions.  She's rethinking the kitchen as a location.  That doesn't mean it was her "fault" or the worker's "fault".  Of course it wasn't, but it's possible that having both boys together with the worker in the kitchen isn't the right level of structure.  

3 hours ago, PeterPan said:

The way our licensed social worker behaviorist put it was "We get the body calm so they can receive the good instruction they're being given."

So I don't know why the boys were running after each other with knives, but stable, calm people don't do that. We can get really flooded with all the problems, all the concerns, and I'm saying that's where I'd start, getting their bodies calm so they can receive the good instruction. Meds, supplements based on genetics, plenty of options. But it has to work. That home worker does not want to work under conditions like that. If she doesn't quit immediately, she may quit soon.

I'm all on board with trauma therapy, trauma-informed interventions, the environment playing a part, the home (poverty, stress, etc.) playing a part. I don't disagree with Mate's book on that. But I'm just saying the FLIP SIDE is blame the mom. It's what happened to us and it obscures the point that kids are themselves, that they are dealing with their internal issues, that not everything is mom's fault.

If these kids have some serious diagnoses going on, do they have a case worker, coordinator, behaviorist, something who is experienced to work at this level? I think talk with your coordinator person and see. In our county the coordinators aren't trained in anything at that level. You have to hire a private behaviorist to get that care. Our county level worker is just ticking boxes for funding and referring. Now they *have* another office in the county that handles more serious stuff. When ds had a growth spurt a while back, we couldn't get him stabilized and we were having some serious discussions. It's kind of hard sometimes to get good help, sigh.

I wish it wasn't that we learn the hard way, but that's how it really is. Op will go through it, figure it out, come to the other side. She'll get banged up, blamed, probably have some fiascos, but she'll get it worked out.

 

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4 hours ago, PeterPan said:

That's the issue with that Mate book Pen linked, that it goes back to BLAME THE MOM, which is what the ps did with us. It gets so old.

 

I didn’t read it that way at all.  But I know some people on Amazon saw it as “blame the mom.”   

For me... it was as much an epiphany as Bessel Van der  Kolk or in some ways similar yet different to learning about epigenetics... 

Wonderfully helpful personally and as a parent. But... obviously what is meaningful and helpful to one person may be the opposite to the next person , or just hohum nothing much positive or negative 

 

 

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7 hours ago, PeterPan said:

Safety isn't just locking away the knives. If the kids' mental health is unstable, bodies unstable, something is unstable, ANYTHING could be the next weapon. It's about making their bodies safe so they can be worked with. 

I agree safety is always a top priority.

 for the twins they are just so impulsive. they think knives the run and grab them. as they cannot remember how to walk safely with a knife they will dance around. think typical 2 year old behaviour. they are not trying to attack anyone just full of enthusiasm and dancing around. which is not safe.

 that is why the need constant full time close supervision. they are extremely impulsive and unsafe. just like a very active 2 year old would. this very close supervision can be very mentally exhausting for DH and myself as we take turns. it is a full time job for both of us.  that is why we have been funded for a 2 hour break.  I don't think the worker was really prepared for how closely she needs to supervise and how much redirection she needs to do to keep the twins safe. maybe she will not be a good match , maybe she was just trying to assess what would happen if she treated them as normalish 8 year old boys or maybe I failed to convey to her their specific needs. I am hoping she comes back again for another try.- because of our rural location it isn't easy to find a perfect fit 

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7 hours ago, Pen said:

 

Were they being used as weapons? 

No. they were over enthusiastic and dancing around with them in their excitement to cut up lemons - think 2 year old behaviour.

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7 hours ago, Pen said:

 

https://canfasd.ca/wp-content/uploads/sites/35/2016/05/Issue_sheet_-_FASD_and_Nutrition-Final.pdf

Re FASD and nutrition / supplements 

Choline, omega 3 fatty acids, and some vitamins are mentioned as showing promise

 

Maybe check all the B vitamins as many have neurological benefits  ?     “Good” fats to try to give building blocks for myelin repair ?  Choline relates to myelin, and maybe look at Alpha  CDP form of choline which can cross blood brain barrier iirc (anyway that’s one form I take from double wood or a company with name similar to that— also a NOW inositol/choline combo— nowadays one can make one’s own gummies if children need that — that is, if you decide you would want to try some but pills can’t be swallowed)

(btw some of the supplements that may be helpful with FASD may overlap with what may be helpful with chemical issues because there’s a toxic exposure problem in common ... if you are from the Australian WTM family with chemical sensitivity , but that might have been someone else) 

 

we are the family with Multiple Chemical Sensitivities  

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9 hours ago, CuriousMomof3 said:

@Melissa in Australia  I wanted to apologize again, because I feel like I keep pulling this back to the question or “are there kids with FASD or PTSD who are helped by psychotropic meds?” Which is, of course an entirely different question from “Do Melissa’s kids need meds?”, but it must feel like that a little.  None of what I posted is intended to answer the second question,  

no problems. It is always good to rethink things like this

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5 hours ago, Pen said:

@PeterPan I am sorry about the response I made to you back when, but from my adoption world perspective what you were describing with your Ds sounded like it could be headed in a really bad direction really fast—and with you yourself potentially in danger.

I’m not getting that same “vibe” from what Melissa has posted.   Whatever was going on it sounded like the situation was within the ability of an older sibling to handle it.  Take away the knife or tell the twin No or however that was done.  

 

exactly take away the knife and say NO.

 I have found that the twins need an almost constant dialog form whoever is supervising them. yes good choice, no not that. etc. they don't notice you saying it consciously but the do respond and redirect. it is called external regulating

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6 minutes ago, Melissa in Australia said:

I agree safety is always a top priority.

 for the twins they are just so impulsive. they think knives the run and grab them. as they cannot remember how to walk safely with a knife they will dance around. think typical 2 year old behaviour. they are not trying to attack anyone just full of enthusiasm and dancing around. which is not safe.

 that is why the need constant full time close supervision. they are extremely impulsive and unsafe. just like a very active 2 year old would. this very close supervision can be very mentally exhausting for DH and myself as we take turns. it is a full time job for both of us.  that is why we have been funded for a 2 hour break.  I don't think the worker was really prepared for how closely she needs to supervise and how much redirection she needs to do to keep the twins safe. maybe she will not be a good match , maybe she was just trying to assess what would happen if she treated them as normalish 8 year old boys or maybe I failed to convey to her their specific needs. I am hoping she comes back again for another try.- because of our rural location it isn't easy to find a perfect fit 

 

In my experience that kind of “young” behavior is not touched by medication, unless you give so much that the kids are sedated and lethargic.

 

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2 hours ago, CuriousMomof3 said:


I'd love to hear more about nutraceuticals.  It wasn't right for us at the time we did the meds, but that doesn't mean that it's not a great tool for the future.  I have a huge advantage over many parents of kids with disabilities in that most of my kid's calories come from blended foods that I put in his g-tube, so I never have the question of whether my kid will actually eat something.  

Can I suggest that you make a separate thread on that?  Maybe, it's me, and it doesn't bother Melissa at all, but I feel kind of guilty that I have completely hijacked this thread and we're not really talking about her situation any more, which sounds like a challenging one that deserves it's own conversation!

it doesn't bother me that the thread is changing direction. that is how conversations go 🙂

 

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39 minutes ago, Melissa in Australia said:

it doesn't bother me that the thread is changing direction. that is how conversations go 🙂

 

 

Cool!

OK then, @Pen I would love to hear more about nutraceuticals!

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9 minutes ago, CuriousMomof3 said:

 

Cool!

OK then, @Pen I would love to hear more about nutraceuticals!

 

If there’s a specific question and I notice or am tagged I’d try to answer it.  If it’s something I be looked into or if it relates to my family as well.

There was a past thread about Inositol and related things for anxiety .  There’ve been ones related to B vitamins and PTSD .  Some parents in WTm have various protocols or stacks. 

Liver damage tends to make me think NAC, SAMe, milk thistle, glutathione...  you have to carefully research anything of course to see if it’s contra indicated.

 

like Ashwaganda has had some good showing in PTSD in war veterans, I think.  But isn’t supposed to be taken when there’s an autoimmune problem .  I don’t know how it would be for an autoinflammatory problem like MK has...

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2 minutes ago, Pen said:

 

If there’s a specific question and I notice or am tagged I’d try to answer it.  If it’s something I be looked into or if it relates to my family as well.

There was a past thread about Inositol and related things for anxiety .  There’ve been ones related to B vitamins and PTSD .  Some parents in WTm have various protocols or stacks. 

Liver damage tends to make me think NAC, SAMe, milk thistle, glutathione...  you have to carefully research anything of course to see if it’s contra indicated.

 

like Ashwaganda has had some good showing in PTSD in war veterans, I think.  But isn’t supposed to be taken when there’s an autoimmune problem .  I don’t know how it would be for an autoinflammatory problem like MK has...

I think it’s unlikely that I would try something on MK.  I doubt there is research into cross reactions with some of his meds, which are very new.  He also gets really solid nutrition (plus chocolate milkshakes 🤣) and because we are pushing calories hard due to FTT and the fact that his metabolism is so high, that means he gets far more than 100 of the RDA for lots of things.  Not to say that the RDA is perfect, just that he gets a lot of nutrition.

But, as the other thread made clear, the rest of our family probably all has a little bit of PTSD after the events of this spring, and I am far more likely to try something on them! 

Any suggestions for kids who are pretty NT dealing with a fair amount of family stress?  Or their mom?

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Read up on B vitamins, Inositol, NAC, Ashwaganda ...  theanine (or black tea),  rhodiola.    Which in turn will probably lead you to yet more as you read ...  hope you’ll share back if anything looks interesting .  

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