OT: How to handle this birthday party situation?

[Guest guest]

I haven't had a chance to post here in a while.  Don't know if you guys remember, but Maia (who was diagnosed with moderate-severe autism in March 2010) started in a mainstream kindergarten in September with the support of an EA -- she's doing really awesome in school right now.  She's integrating well with all the NT kids in her class, she's making some friends, gaining appropriate play and social skills.  We're still working at articulation -- she " talks " quite a bit but articulation still needs a lot of work and she's still considered " nonverbal " because her articulation isn't clear enough where people who don't know her can understand her immediately and she's not there yet where she can have a conversation (although that's coming along, too).  She's not on a modified curriculum right now -- she's doing the whole curriculum that the rest of the class is doing and table work still requires some EA assistance.  Her apraxia is definitely getting better -- gross motor imitation skills are almost fully mastered (to where she can fully participate without support in her gym class), facial expression imitation skills are in the process of being mastered (almost fully now), verbal imitation -- still missing the " f " sound (a few sounds are still hit/miss and will take her a few tries to get the right sound), gestural communication is coming along nicely (able to shake her head for " no " or nod for " yes " while saying the words " no " or " yes " and she understands what these terms mean and uses them meaningfully); fine motor -- she's in a place where she can use a crayon (with some hand-over-hand sometimes) and cut paper completely independently with scissors.  She can verbally request but still requires some prompts on how to start the word for what she wants.  She still needs some help going to the bathroom (needs some prompts and direction) and maybe some help getting up onto the toilet if it's a little high.  Needs some help to stay on task at school, but she is in a place where she can be assisted by peers now, and her EA and teacher are facilitating having the other kids give her verbal reminders to sit down when she stands up during circle time -- she understands and peer assistance is effective now.  She can do most things the rest of the class can do without disrupting the rest of the class.  We're seeing joint attention in school assemblies, story time, and movies.  Her initial teacher is now gone from the school and we have an amazing teacher now who's working on integrating her and I love her teacher.  She really enjoys her friends at school now, and when I drop her off, no crying -- she just takes off to go see what her friends are doing the moment we walk into the classroom.  Other kids are greeting her and she's greeting them back. 

Food issues are almost now all fully resolved (if you remember, she had chronic loose stools w/ undigested food last year).  We can actually go out to eat now and it's not a big deal if she has a gluten infraction.  I tried re-introducing gluten for two weeks and at the end of two weeks, there was a little bit of spaciness (that was resolved with a few days of gluten enzymes).  Same with milk and soy.  Not a good idea if she has them every single day but not a big deal if she does have them once in a while and I won't notice it at all if I just give her an enzyme.  So she can eat your standard birthday party food.

So here's the thing -- she's invited to a birthday party by one of the kids in her class and although we've been to b-day parties, I've always been there but I think this is one of those b-day parties where other children's mommies and daddies aren't hovering around.  It's going to be at a Mickey D's with an indoor playground and although I'm not thrilled about her having Mickey D's, it's not the end of the world and we'd definitely be able to do Mickey D's without any problems with enzymes.  I'd like her to go because, well, I think she'd have fun and I think it's a good social skill opportunity.  It's not going to be as much structure as she has at school or her ABA centre, so I'm not sure how she'll take to that.  But I'm really feeling that this is one of those moments where I'm supposed to " let go " and let her grow up.  I'm not quite sure how to handle this situation from the autism side.  I don't want Maia to be the only kid whose mommy is hanging around but at the same time, I don't know how it'll go.  How do I do this?  How do I let her go and not be the helicopter mommy (and making other kids think that she's not cool), while ensuring that she won't completely run the birthday boy's parents into the ground by needing constant re-direction?  Any ideas?

[Guest guest]

Let her go have fun! Buy a coffee and sit at a table where you can see her but you're not on top of her. Way to go, Maia. I'm so proud of you guys. You've come a long, loooong way.You could prepare her by doing a "We're going to a birthday party!" social story. Go over things that will probably or potentially happen so she knows what to expect, the let her to it! Yayyyyy Maia!! To:

m12valtrex <mb12valtrex > Sent: Wednesday, December 7, 2011 2:46 AM Subject: OT: How to handle this birthday party situation?

I haven't had a chance to post here in a while. Don't know if you guys remember, but Maia (who was diagnosed with moderate-severe autism in March 2010) started in a mainstream kindergarten in September with the support of an EA -- she's doing really awesome in school right now. She's integrating well with all the NT kids in her class, she's making some friends, gaining appropriate play and social skills. We're still working at articulation -- she "talks" quite a bit but articulation still needs a lot of work and she's still considered "nonverbal" because her articulation isn't clear enough where people who don't know her can understand her immediately and she's not there yet where she can have a conversation (although that's coming along, too). She's not on a modified curriculum right now -- she's doing the whole curriculum that the rest of the class is doing and table work still requires some EA assistance. Her

apraxia is definitely getting better -- gross motor imitation skills are almost fully mastered (to where she can fully participate without support in her gym class), facial expression imitation skills are in the process of being mastered (almost fully now), verbal imitation -- still missing the "f" sound (a few sounds are still hit/miss and will take her a few tries to get the right sound), gestural communication is coming along nicely (able to shake her head for "no" or nod for "yes" while saying the words "no" or "yes" and she understands what these terms mean and uses them meaningfully); fine motor -- she's in a place where she can use a crayon (with some hand-over-hand sometimes) and cut paper completely independently with scissors. She can verbally request but still requires some prompts on how to start the word for what she wants. She still needs some help going to the bathroom (needs some prompts and direction) and maybe some help

getting up onto the toilet if it's a little high. Needs some help to stay on task at school, but she is in a place where she can be assisted by peers now, and her EA and teacher are facilitating having the other kids give her verbal reminders to sit down when she stands up during circle time -- she understands and peer assistance is effective now. She can do most things the rest of the class can do without disrupting the rest of the class. We're seeing joint attention in school assemblies, story time, and movies. Her initial teacher is now gone from the school and we have an amazing teacher now who's working on integrating her and I love her teacher. She really enjoys her friends at school now, and when I drop her off, no crying -- she just takes off to go see what her friends are doing the moment we walk into the classroom. Other kids are greeting her and she's greeting them back.

Food issues are almost now all fully resolved (if you remember, she had chronic loose stools w/ undigested food last year). We can actually go out to eat now and it's not a big deal if she has a gluten infraction. I tried re-introducing gluten for two weeks and at the end of two weeks, there was a little bit of spaciness (that was resolved with a few days of gluten enzymes). Same with milk and soy. Not a good idea if she has them every single day but not a big deal if she does have them once in a while and I won't notice it at all if I just give her an enzyme. So she can eat your standard birthday party food.

So here's the thing -- she's invited to a birthday party by one of the kids in her class and although we've been to b-day parties, I've always been there but I think this is one of those b-day parties where other children's mommies and daddies aren't hovering around. It's going to be at a Mickey D's with an indoor playground and although I'm not thrilled about her having Mickey D's, it's not the end of the world and we'd definitely be able to do Mickey D's without any problems with enzymes. I'd like her to go because, well, I think she'd have fun and I think it's a good social skill opportunity. It's not going to be as much structure as she has at school or her ABA centre, so I'm not sure how she'll take to that. But I'm really feeling that this is one of those moments where I'm supposed to "let go" and let her grow up. I'm not quite sure how to handle this situation from the autism side. I don't want Maia to be

the only kid whose mommy is hanging around but at the same time, I don't know how it'll go. How do I do this? How do I let her go and not be the helicopter mommy (and making other kids think that she's not cool), while ensuring that she won't completely run the birthday boy's parents into the ground by needing constant re-direction? Any ideas?

[Guest guest]

This was my thought exactly. I don't know that I would feel comfortable just

dropping off, but I would bring a magazine or something and sit nearby. I would

communicate to the parents ahead of time that I would not be hedging in on the

party, but would be on hand nearby " just in case. " I don't think kindergartners

would think much of you being there and stepping in if she needs assistance in

some way (say the bathroom or something.) I think the parents would be totally

cool with that, too.

Have fun!

Cathy

>

> Let her go have fun!  Buy a coffee and sit at a table where you can see her

but you're not on top of her.  Way to go, Maia.  I'm so proud of you guys.

 You've come a long, loooong way.

>

> You could prepare her by doing a " We're going to a birthday party! " social

story.  Go over things that will probably or potentially happen so she knows

what to expect, the let her to it!  Yayyyyy Maia!!

>

>

[Guest guest]

I'd do a social story with her stressing the different events/transitions. And I'd make sure mommy had her magnesium before she left for the party ;-)

So here's the thing -- she's invited to a birthday party by one of the kids in her class and although we've been to b-day parties, I've always been there but I think this is one of those b-day parties where other children's mommies and daddies aren't hovering around.  It's going to be at a Mickey D's with an indoor playground and although I'm not thrilled about her having Mickey D's, it's not the end of the world and we'd definitely be able to do Mickey D's without any problems with enzymes.  I'd like her to go because, well, I think she'd have fun and I think it's a good social skill opportunity.  It's not going to be as much structure as she has at school or her ABA centre, so I'm not sure how she'll take to that.  But I'm really feeling that this is one of those moments where I'm supposed to " let go " and let her grow up.  I'm not quite sure how to handle this situation from the autism side.  I don't want Maia to be the only kid whose mommy is hanging around but at the same time, I don't know how it'll go.  How do I do this?  How do I let her go and not be the helicopter mommy (and making other kids think that she's not cool), while ensuring that she won't completely run the birthday boy's parents into the ground by needing constant re-direction?  Any ideas?

[Guest guest]

OK, I'll do a social story.  We hadn't done social stories much before because I didn't feel she was there, where they'd be effective, but lately, her comprehension of verbal explanations has gotten worlds better so I think that would be effective now. 

Hey, btw, thanks, Toni, for the R5P talk we had some time ago.  I happened to find a bottle of the AOR Advanced B old formulation at a HFS, and it still had R5P in it, so we started back on that and I can't believe the difference.  You were right, R5P rocks! 

 

I'd do a social story with her stressing the different events/transitions. And I'd make sure mommy had her magnesium before she left for the party ;-)

[Guest guest]

My son is in general Ed kindergarten too. I always bring his own food to

parties and just tell parents that he is allergic to everything.

I still sort of hover. My son is still very apraxic and he is very difficult to

understand if you don't know his sounds. The other parents know that he was

born with Lyme disease and has a speech disorder, so no one thinks anything of

me being a little over protective. It actually never ceases to amaze me that he

has so many friends given that he never even acknowledged another child until

about a year ago.

--- In mb12valtrex ,

> Food issues are almost now all fully resolved (if you remember, she had

> chronic loose stools w/ undigested food last year). We can actually go out

> to eat now and it's not a big deal if she has a gluten infraction. I tried

> re-introducing gluten for two weeks and at the end of two weeks, there was

> a little bit of spaciness (that was resolved with a few days of gluten

> enzymes). Same with milk and soy. Not a good idea if she has them every

> single day but not a big deal if she does have them once in a while and I

> won't notice it at all if I just give her an enzyme. So she can eat your

> standard birthday party food.

>

> So here's the thing -- she's invited to a birthday party by one of the kids

> in her class and although we've been to b-day parties, I've always been

> there but I think this is one of those b-day parties where other children's

> mommies and daddies aren't hovering around. It's going to be at a Mickey

> D's with an indoor playground and although I'm not thrilled about her

> having Mickey D's, it's not the end of the world and we'd definitely be

> able to do Mickey D's without any problems with enzymes. I'd like her to

> go because, well, I think she'd have fun and I think it's a good social

> skill opportunity. It's not going to be as much structure as she has at

> school or her ABA centre, so I'm not sure how she'll take to that. But I'm

> really feeling that this is one of those moments where I'm supposed to " let

> go " and let her grow up. I'm not quite sure how to handle this situation

> from the autism side. I don't want Maia to be the only kid whose mommy is

> hanging around but at the same time, I don't know how it'll go. How do I

> do this? How do I let her go and not be the helicopter mommy (and making

> other kids think that she's not cool), while ensuring that she won't

> completely run the birthday boy's parents into the ground by needing

> constant re-direction? Any ideas?

>

[Guest guest]

I was doing our own food and stuff, but 95% of our food issues are almost fully resolved (I just have to watch portions so that she doesn't go into leucine overload or we start seeing the clinical depression/serotonin crash symptoms again) and we're at the point where we can start eating things that everyone else is eating now.  Biotin was really really awesome for that.  As soon as I increased the dosage, she started tolerating all foods.  I think a lot of it had to do with her leucine metabolism issue -- or, rather, maybe her leucine metabolism issue has to do with low biotin?  I'm still not quite sure about what's up with that leucine thing.  I think it's working a little bit better with more biotin, where we don't get completely derailed by the wrong foods anymore.  We're doing much higher doses of B6 and magnesium now and that's been working out really well for her -- I think the increased b6 might be helping out the tyrosine-to-dopamine pathway.

 

My son is in general Ed kindergarten too. I always bring his own food to parties and just tell parents that he is allergic to everything.

I still sort of hover. My son is still very apraxic and he is very difficult to understand if you don't know his sounds. The other parents know that he was born with Lyme disease and has a speech disorder, so no one thinks anything of me being a little over protective. It actually never ceases to amaze me that he has so many friends given that he never even acknowledged another child until about a year ago.

--- In mb12valtrex ,

> Food issues are almost now all fully resolved (if you remember, she had

> chronic loose stools w/ undigested food last year). We can actually go out

> to eat now and it's not a big deal if she has a gluten infraction. I tried

> re-introducing gluten for two weeks and at the end of two weeks, there was

> a little bit of spaciness (that was resolved with a few days of gluten

> enzymes). Same with milk and soy. Not a good idea if she has them every

> single day but not a big deal if she does have them once in a while and I

> won't notice it at all if I just give her an enzyme. So she can eat your

> standard birthday party food.

>

> So here's the thing -- she's invited to a birthday party by one of the kids

> in her class and although we've been to b-day parties, I've always been

> there but I think this is one of those b-day parties where other children's

> mommies and daddies aren't hovering around. It's going to be at a Mickey

> D's with an indoor playground and although I'm not thrilled about her

> having Mickey D's, it's not the end of the world and we'd definitely be

> able to do Mickey D's without any problems with enzymes. I'd like her to

> go because, well, I think she'd have fun and I think it's a good social

> skill opportunity. It's not going to be as much structure as she has at

> school or her ABA centre, so I'm not sure how she'll take to that. But I'm

> really feeling that this is one of those moments where I'm supposed to " let

> go " and let her grow up. I'm not quite sure how to handle this situation

> from the autism side. I don't want Maia to be the only kid whose mommy is

> hanging around but at the same time, I don't know how it'll go. How do I

> do this? How do I let her go and not be the helicopter mommy (and making

> other kids think that she's not cool), while ensuring that she won't

> completely run the birthday boy's parents into the ground by needing

> constant re-direction? Any ideas?

>

[Guest guest]

I gotta say, Tammy, most of the gains we've seen, we have Owens to thank for it.  She's been so right on the money in identifying what's wrong with Maia.  But the underlying reasons of why Maia needs so much B6, I'm starting to suspect we might be looking at KPU with her...which is another thing we're going to need to work on next.

 

Let her go have fun!  Buy a coffee and sit at a table where you can see her but you're not on top of her.  Way to go, Maia.  I'm so proud of you guys.  You've come a long, loooong way.

You could prepare her by doing a " We're going to a birthday party! " social story.  Go over things that will probably or potentially happen so she knows what to expect, the let her to it!  Yayyyyy Maia!!

[Guest guest]

Hi Alberta,

I am interested in the leucine metabolism issue. Do you supplement leucine,

avoid it or just support it's metabolism?

My son still seems to need or benefit from elemental proteins and I have yet to

figure this one out. Thanks.

>

> > **

> >

> >

> > My son is in general Ed kindergarten too. I always bring his own food to

> > parties and just tell parents that he is allergic to everything.

> >

> > I still sort of hover. My son is still very apraxic and he is very

> > difficult to understand if you don't know his sounds. The other parents

> > know that he was born with Lyme disease and has a speech disorder, so no

> > one thinks anything of me being a little over protective. It actually never

> > ceases to amaze me that he has so many friends given that he never even

> > acknowledged another child until about a year ago.

> >

> > --- In mb12valtrex ,

> > > Food issues are almost now all fully resolved (if you remember, she had

> > > chronic loose stools w/ undigested food last year). We can actually go

> > out

> > > to eat now and it's not a big deal if she has a gluten infraction. I

> > tried

> > > re-introducing gluten for two weeks and at the end of two weeks, there

> > was

> > > a little bit of spaciness (that was resolved with a few days of gluten

> > > enzymes). Same with milk and soy. Not a good idea if she has them every

> > > single day but not a big deal if she does have them once in a while and I

> > > won't notice it at all if I just give her an enzyme. So she can eat your

> > > standard birthday party food.

> > >

> > > So here's the thing -- she's invited to a birthday party by one of the

> > kids

> > > in her class and although we've been to b-day parties, I've always been

> > > there but I think this is one of those b-day parties where other

> > children's

> > > mommies and daddies aren't hovering around. It's going to be at a Mickey

> > > D's with an indoor playground and although I'm not thrilled about her

> > > having Mickey D's, it's not the end of the world and we'd definitely be

> > > able to do Mickey D's without any problems with enzymes. I'd like her to

> > > go because, well, I think she'd have fun and I think it's a good social

> > > skill opportunity. It's not going to be as much structure as she has at

> > > school or her ABA centre, so I'm not sure how she'll take to that. But

> > I'm

> > > really feeling that this is one of those moments where I'm supposed to

> > " let

> > > go " and let her grow up. I'm not quite sure how to handle this situation

> > > from the autism side. I don't want Maia to be the only kid whose mommy is

> > > hanging around but at the same time, I don't know how it'll go. How do I

> > > do this? How do I let her go and not be the helicopter mommy (and making

> > > other kids think that she's not cool), while ensuring that she won't

> > > completely run the birthday boy's parents into the ground by needing

> > > constant re-direction? Any ideas?

> > >

> >

> >

> >

>

[Guest guest]

You mentioned your son is apraxic, too?  After talking with about a dozen people, I'm finding that a lot of kids who have apraxia also have leucine metabolism issues.Maia doesn't process leucine efficiently AND she's low in leucine.  So I'm supplementing to support leucine metabolism.  I do not supplement leucine in any way, shape or form right now.  Any supplements with leucine right now throws her into a mental/emotional state that looks like depression.  Really scary to see.  Imagine yeast and viral die-off to the nth power and not being able to mop it up with anything. 

Biotin (biotin breaks down leucine), high dose B6 (because b6 is required to make niacin and low B6 will mean niacin is not being made -- this would be indicated in elevated quinolinic acid or a trend of quinolinic rising from one OAT to another -- as you consume more leucine, the body will signal to the tryptophan cycle that it needs more niacin to break it down and it will convert more tryptophan into quinolinic but without adequate precursors like B6, quinolinic will just keep building and niacin production will be halted), increased magnesium (350 to 400 mg/day), niacinamide (on top of what's in the b-complex), 5-HTP (to prevent serotonin crashes when she has increased leucine from diet from sources like eggs), significant increases in carnitine (OAT advised 1000 to 2000 mg/day -- we're at about 1200 mg, split between ALC and LC), 450 mg of CoQ10 and 200 mg of Vit E.  We need to add NAD, too. 

Found out that leucine is required in making neurotransmitters.  Leucine must be metabolized in order for certain neurotransmitters to be made.  To help lift the apraxia, we need more neurotransmitters (well, Maia does -- I'm not sure about ALL cases of apraxia is the child having inadequate neurotransmitters -- but for Maia, not being able to metabolize leucine, I suspect that this is the source -- not enough neurotransmitters). 

 

Hi Alberta,

I am interested in the leucine metabolism issue. Do you supplement leucine, avoid it or just support it's metabolism?

[Guest guest]

Oh, one more thing -- we are steering clear of corn almost completely.  Corn inhibits the production of niacin, which will further perpetuate the leucine metabolism problem.  Leucine metabolism is so rooted in niacin.  Look up pellegra -- it's more prominent in cultures where there are corn-based diets.  The very last thing you want if you have problems metabolizing leucine is anything inhibiting the body's ability to produce and metabolize niacin.

[Guest guest]

alberta you answered this before but can you tell me again what brand of carnisine and carnitine did you use with good effect?

channa

To: mb12valtrex Sent: Wednesday, December 7, 2011 7:07 PMSubject: Re: Re: OT: How to handle this birthday party situation?

You mentioned your son is apraxic, too? After talking with about a dozen people, I'm finding that a lot of kids who have apraxia also have leucine metabolism issues.Maia doesn't process leucine efficiently AND she's low in leucine. So I'm supplementing to support leucine metabolism. I do not supplement leucine in any way, shape or form right now. Any supplements with leucine right now throws her into a mental/emotional state that looks like depression. Really scary to see. Imagine yeast and viral die-off to the nth power and not being able to mop it up with anything. Biotin (biotin breaks down leucine), high dose B6 (because b6 is required to make niacin and low B6 will mean niacin is not being made -- this would be indicated in elevated quinolinic acid or a trend of quinolinic rising from one OAT to another -- as you consume more leucine, the body will signal to the tryptophan cycle that it

needs more niacin to break it down and it will convert more tryptophan into quinolinic but without adequate precursors like B6, quinolinic will just keep building and niacin production will be halted), increased magnesium (350 to 400 mg/day), niacinamide (on top of what's in the b-complex), 5-HTP (to prevent serotonin crashes when she has increased leucine from diet from sources like eggs), significant increases in carnitine (OAT advised 1000 to 2000 mg/day -- we're at about 1200 mg, split between ALC and LC), 450 mg of CoQ10 and 200 mg of Vit E. We need to add NAD, too. Found out that leucine is required in making neurotransmitters. Leucine must be metabolized in order for certain neurotransmitters to be made. To help lift the apraxia, we need more neurotransmitters (well, Maia does -- I'm not sure about ALL cases of apraxia is the child having inadequate neurotransmitters -- but for Maia, not being able to metabolize

leucine, I suspect that this is the source -- not enough neurotransmitters).

Hi Alberta,I am interested in the leucine metabolism issue. Do you supplement leucine, avoid it or just support it's metabolism?

[Guest guest]

I'm not using anything special for carnitine -- just Now Foods.  Carnosine, I was using AOR but we've stopped carnosine just because I wasn't seeing any additional gain from it and it's not cheap.  We ran an amino profile, too, and carnosine was the only amino that was at ok levels.  I might restart it again in the new year, though, to see if we can get any new gains from it.

 

alberta you answered this before but can you tell me again what brand of carnisine and carnitine did you use with good effect?

channa

To: mb12valtrex Sent: Wednesday, December 7, 2011 7:07 PM

Subject: Re: Re: OT: How to handle this birthday party situation?

 

You mentioned your son is apraxic, too?  After talking with about a dozen people, I'm finding that a lot of kids who have apraxia also have leucine metabolism issues.Maia doesn't process leucine efficiently AND she's low in leucine.  So I'm supplementing to support leucine metabolism.  I do not supplement leucine in any way, shape or form right now.  Any supplements with leucine right now throws her into a mental/emotional state that looks like depression.  Really scary to see.  Imagine yeast and viral die-off to the nth power and not being able to mop it up with anything. 

Biotin (biotin breaks down leucine), high dose B6 (because b6 is required to make niacin and low B6 will mean niacin is not being made -- this would be indicated in elevated quinolinic acid or a trend of quinolinic rising from one OAT to another -- as you consume more leucine, the body will signal to the tryptophan cycle that it

needs more niacin to break it down and it will convert more tryptophan into quinolinic but without adequate precursors like B6, quinolinic will just keep building and niacin production will be halted), increased magnesium (350 to 400 mg/day), niacinamide (on top of what's in the b-complex), 5-HTP (to prevent serotonin crashes when she has increased leucine from diet from sources like eggs), significant increases in carnitine (OAT advised 1000 to 2000 mg/day -- we're at about 1200 mg, split between ALC and LC), 450 mg of CoQ10 and 200 mg of Vit E.  We need to add NAD, too. 

Found out that leucine is required in making neurotransmitters.  Leucine must be metabolized in order for certain neurotransmitters to be made.  To help lift the apraxia, we need more neurotransmitters (well, Maia does -- I'm not sure about ALL cases of apraxia is the child having inadequate neurotransmitters -- but for Maia, not being able to metabolize

leucine, I suspect that this is the source -- not enough neurotransmitters). 

 

Hi Alberta,I am interested in the leucine metabolism issue. Do you supplement leucine, avoid it or just support it's metabolism?

[Guest guest]

thank you alberta:)

To: mb12valtrex Sent: Wednesday, December 7, 2011 8:42 PMSubject: Re: Re: OT: How to handle this birthday party situation?

I'm not using anything special for carnitine -- just Now Foods. Carnosine, I was using AOR but we've stopped carnosine just because I wasn't seeing any additional gain from it and it's not cheap. We ran an amino profile, too, and carnosine was the only amino that was at ok levels. I might restart it again in the new year, though, to see if we can get any new gains from it.

alberta you answered this before but can you tell me again what brand of carnisine and carnitine did you use with good effect?

channa

To: mb12valtrex Sent: Wednesday, December 7, 2011 7:07 PMSubject: Re: Re: OT: How to handle this birthday party situation?

You mentioned your son is apraxic, too? After talking with about a dozen people, I'm finding that a lot of kids who have apraxia also have leucine metabolism issues.Maia doesn't process leucine efficiently AND she's low in leucine. So I'm supplementing to support leucine metabolism. I do not supplement leucine in any way, shape or form right now. Any supplements with leucine right now throws her into a mental/emotional state that looks like depression. Really scary to see. Imagine yeast and viral die-off to the nth power and not being able to mop it up with anything. Biotin (biotin breaks down leucine), high dose B6 (because b6 is required to make niacin and low B6 will mean niacin is not being made -- this would be indicated in elevated quinolinic acid or a trend of quinolinic rising from one OAT to another -- as you consume more leucine, the body will signal to the tryptophan cycle that it

needs more niacin to break it down and it will convert more tryptophan into quinolinic but without adequate precursors like B6, quinolinic will just keep building and niacin production will be halted), increased magnesium (350 to 400 mg/day), niacinamide (on top of what's in the b-complex), 5-HTP (to prevent serotonin crashes when she has increased leucine from diet from sources like eggs), significant increases in carnitine (OAT advised 1000 to 2000 mg/day -- we're at about 1200 mg, split between ALC and LC), 450 mg of CoQ10 and 200 mg of Vit E. We need to add NAD, too. Found out that leucine is required in making neurotransmitters. Leucine must be metabolized in order for certain neurotransmitters to be made. To help lift the apraxia, we need more neurotransmitters (well, Maia does -- I'm not sure about ALL cases of apraxia is the child having inadequate neurotransmitters -- but for Maia, not being able to metabolize

leucine, I suspect that this is the source -- not enough neurotransmitters).

Hi Alberta,I am interested in the leucine metabolism issue. Do you supplement leucine, avoid it or just support it's metabolism?

[Guest guest]

Thank you for sharing this. I will dive into this further. We definitely avoid

corn and supplement niacinamide. But we are no longer able to do high dose

biotin as anything over 2500mcg keeps him up all night.

Have you tried supplementing branched chain amino acids? Perhaps the leucine

would be effective in this form? I definitely see the role of amino acids in my

son's apraxia and have yet to pinpoint and resolve it.

My son's biggest remaining issues are apraxia and PANDAS. I constantly feel

that every step we make toward fixing one inevitably flares the other.

>

> Oh, one more thing -- we are steering clear of corn almost completely.

> Corn inhibits the production of niacin, which will further perpetuate the

> leucine metabolism problem. Leucine metabolism is so rooted in niacin.

> Look up pellegra -- it's more prominent in cultures where there are

> corn-based diets. The very last thing you want if you have problems

> metabolizing leucine is anything inhibiting the body's ability to produce

> and metabolize niacin.

>

[Guest guest]

Caryn,I am not sure we have PANDAS here. Both kids test neg but show signs.Anyway, one effective supp we are using is " GABA plus " by twinlab.It has a little GABA and also has inositol and niacinamide.

I am mentioning it b/c you are looking into niacinamide, and inositol is good for PANDAS/ocd.

 

Thank you for sharing this. I will dive into this further. We definitely avoid corn and supplement niacinamide. But we are no longer able to do high dose biotin as anything over 2500mcg keeps him up all night.

Have you tried supplementing branched chain amino acids? Perhaps the leucine would be effective in this form? I definitely see the role of amino acids in my son's apraxia and have yet to pinpoint and resolve it.

My son's biggest remaining issues are apraxia and PANDAS. I constantly feel that every step we make toward fixing one inevitably flares the other.

>

> Oh, one more thing -- we are steering clear of corn almost completely.

> Corn inhibits the production of niacin, which will further perpetuate the

> leucine metabolism problem. Leucine metabolism is so rooted in niacin.

> Look up pellegra -- it's more prominent in cultures where there are

> corn-based diets. The very last thing you want if you have problems

> metabolizing leucine is anything inhibiting the body's ability to produce

> and metabolize niacin.

>

[Guest guest]

I don't think Maia has full-blown PANDAS right now but, from her CDSA, she definitely has a gut that is conducive to strep overgrowth (alpha strep) -- whether or not that means it'll morph into PANDAS at a later time, we have yet to see.  I spent a good 5 to 6 months this past year actively trying to bring down the alpha strep population in her gut with goldenseal, doing courses of 3 to 5 days of goldenseal every 4 to 5 weeks.  I'm trying to head off PANDAS because it really doesn't sound like a pleasant thing to deal with.  (She does have a problem with B6 -- whether it's KPU or just low b6 from diet or b6 is biounavailable for some other reason, I'm not quite sure yet -- and I did know that at the time, so that's why I never pounded the strep with goldenseal for any longer than that). 

I haven't tried any BCAAs yet...it's sitting in my cupboard right now. TBH, I'm a bit scared to start fully supplementing the BCAAs because of what happens when leucine is even a filler ingredient in some other supps presents problems -- I'm not quite certain what will happen with higher doses of leucine.  We ran an amino profile on her in July and all her BCAAs are definitely low.  The amino profile said that Maia needs about 1100 mg of leucine a day.  There were no aminos where it recommended that we need less than 1000 mg of any amino (except carnosine -- our carnosine levels were " ok " only because I was supplementing 1000 mg of carnosine per day for more than 6 months).  That's how low we are.  But if I supplement leucine when her niacin production isn't quite working right (because of whatever issues with B6) -- I'm thinking that would raise her quinolinic, which would be a whole other can of worms.  Right now, I'm focusing on the b6 and giving the precursors to get her niacin-tryptophan pathways to work properly and I want to get her tested for KPU before we go any further with the BCAAs. 

Have you run an amino profile on your son?  I'm curious about what his aminos look like.I really feel like I'm peeling an onion here.  Each layer of answers I peel away, I wind up with more questions.  But there's gotta be a point where the onion has no more skin to peel...hopefully.

Toni: that's interesting about inositol being good for PANDAS and OCD.  I have noticed a significant reduction in OCD-ish type behaviors in Maia (i.e. limited interests) and she really has branched out her interests in the last little while.  We started inositol back in late September, but I never knew it was good for treating OCD.  That's nice to know because Ethan has pretty intense OCD behaviors.  Now, Ethan's another story, I am really beginning to suspect PANDAS in him. 

 

Thank you for sharing this. I will dive into this further. We definitely avoid corn and supplement niacinamide. But we are no longer able to do high dose biotin as anything over 2500mcg keeps him up all night.

Have you tried supplementing branched chain amino acids? Perhaps the leucine would be effective in this form? I definitely see the role of amino acids in my son's apraxia and have yet to pinpoint and resolve it.

My son's biggest remaining issues are apraxia and PANDAS. I constantly feel that every step we make toward fixing one inevitably flares the other.

[Guest guest]

 

Toni: that's interesting about inositol being good for PANDAS and OCD.  I have noticed a significant reduction in OCD-ish type behaviors in Maia (i.e. limited interests) and she really has branched out her interests in the last little while.  We started inositol back in late September, but I never knew it was good for treating OCD.  That's nice to know because Ethan has pretty intense OCD behaviors.  Now, Ethan's another story, I am really beginning to suspect PANDAS in him. 

You can go pretty nuts with the inositol dosing, and it is yummy and comes in a powder, perfect administration mode for a youngun like Ethan. :-) When we ran out, I let the kids go to school without it. Gabi was ok but she was breaking down for other reasons

(yeast) but Alek's papers came home with major signs of number OCD. I took a pic of one of the papers,cracks me up. In the IEP meeting yesterday one of the teachers mentioned to me how they were speaking and then he just went off

into counting mode and wouldn't stop counting. Schools can be so dumb, she mentioned it like it was " funny " which it's funny if it's mommy saying it LOL but not funny if you are the teacher (slap) Anyway, they

are fond of telling me Alek has no problems and see nothing " wrong " with a kid who is ignoring the teacherwhile he counts everything and can't be redirected to anything. But the nice thing is in their attempt to

deny anything out of the ordinary, they use appropriate methods to deal with it... she said when he was stuck in numbermode, she just drew a stop sign on a piece of paper and held it up in front of him, and he stopped and got back on task.

LOL !!!!!!!!!!!!Anyway, I am out of GABA plus again !!!!!!!!!!!!!!!Toni