Re: Where do I start?

June 19, 2012

Kim have you tried a chiropractor ? one that does cranial work and myfacia - don't know how to spell itannie with ds and chronic fatique syndrome and etc - this has helped her a ton - even her crossing of her eyes - we have allot of work to do yet but she has been helped so much I have not been one to like meds but when needed we have our is 8 adopted also at 18 months - we have tried ritalin - it worked but once thedose was high enough where he could focus - he had bad reaction to it - so for a yearI did nothing - we tried adderall - and got much the same kind of reaction - I was

afraid of him - he was so crazy mean - we tried last fall intuniv and that is what has helped him the most - he is on the higher endbut he also is a drug baby - I have homeschooled this last year and he can write his nameneatly and can do first grade - the beginning part of the year - we had to focus allot of our day on obedience, tolieting, eating issues before we could really work on the academics - Em is 11 - she has rubenstein taybi syndrome - we got her at age 5 - the chiropractor put her on a supplement called min tran - supposed to calm the brain - we also have her on ginko and just a couple weeks ago startedher on intuniv and we are seeing some results - just not as good as what

wesaw with - but then she is at the lowest dose possible we have been better able to get her in the bathroom and she is staying dryabout 50 % of the time - when Em came to us, no one had worked with her - she was licking doors windowsbooks - we have lots of books ( we were told we would have to let her do this as thisis the kind of imput she needed and we would have to change our family rules about not having the tv on) screaming at the tv because I did not have it on - never ate at the table with familythrew food, more like a wild animal than a little girl - she has come so very farEm still does not like much in her room - she has a bed, dresser and a corner

cupboardfor backpack, shoes and extra blanket and coat hooks behind door the only pictures on the wall are ones she can not reach and throw out the doorshe likes the color purple so painted the room a soft lavender - she just can't stand clutter in her space - come to think of it much of the toys and such we also keep out of sight or she throws it out - the intuniv is give for both my kids at night - they seem to sleep better and have a muchbetter day then - we tried the in morning and Em was too sleepy - rox To: DownSyndromeInfoExchange Sent: Tuesday, June 19, 2012 1:40 PM Subject: [DownSyndromeInfoExchange] Where do I start?

Hi everyone,

I have been reading some back posts to try to get some ideas of where to start to address my child's ADHD type behavior. It's very overwhelming!

Background info:

We adopted Amy from Hong Kong when she was 18 mos. She has DS and has always been extremely ACTIVE and LOUD. We have seen positive changes over the years, for example, she no longer picks up every object in sight to hurl it across the room. Instead, she picks things up and shoves them in my face while yelling jibberish I assume means "put this somewhere else".

Despite homeschooling my other kids, or maybe because of homeschooling the others, Amy has attended public school up until we pulled her out a few weeks ago. She will be homeschooled from now on.

To replace ps speech therapy, I took her for a speech eval to get private speech therapy started. It was the first time in two years that she has had an eval done that I have sat in on. What I saw was a child whose minds is like a ping pong ball bouncing all over the room. Amy was not being naughty, defiant, or uncooperative. She appeared to simply have no control over where her thoughts landed. She appeared to not have the ability to choose what she focused on. If she saw something interesting, she had to go touch it right that instant. Consequently, her speech was determined to be at the level of a two yr. old. Her expressive speech is pretty much at that level, but I know she has a much larger database of words she understands than a 2 y.o.

I have not been in favor of medicating her with meds like ritalin to slow her down. A doctor recommended it back when she was 3 or 4, and we tried Adderall for one day. Only one day because it made her psycho! It gave her raging OCD, volatile emotions, and insomnia that made her sob most of the night. Amy is naturally a super happy child, we we horrified at what that drug did to her!

Now I'm wondering if I should be doing something to address the ADHD type behavior. My husband is in favor of trying meds again, but I find myself feeling ill when I think about it. He brother and sisters think it's nuts to try drugs again.

I see our choices as either trying something in the herbal/natural/dietary category, or continuing to just accept how she is and work our lives around it.

So, where do I start? There are so many "remedies" out there. How do I know what is helpful and what is snake-oil? I'm so hesitant to buy anything for fear of wasting money. My attempts at finding a fish oil/omega supplement failed. She didn't like how they tasted and wouldn't take them.

Thanks for your help,

Kim

June 19, 2012

I hadn't thought of chiropractic. Interesting that they do cranial adjustments,

especially since Amy's head is very mis-shapened. I assume she laid in her crib

too much at the orphanage with the way it is flat off to one side on the back,

as if she laid on her back, looking off to her left. Maybe there was a wall on

her right side. I do wonder if her cranial situation might be beyond what could

be helped by chiropractic's gentle manipulations. Her head really is shaped like

a pumpkin that didn't get rotated.

BTW: I realized after posting that I hadn't mentioned that Amy is 7 yrs. old.

Kim

>

> Kim have you tried a chiropractor ? one that does cranial work and myfacia -

don't know how to spell it

>

> annie with ds and chronic fatique syndrome and etc - this has helped

>

> her a ton - even her crossing of her eyes - we have allot of work to

>

> do yet but she has been helped so much

>

June 19, 2012

I hadn't thought of chiropractic. Interesting that they do cranial adjustments,

especially since Amy's head is very mis-shapened. I assume she laid in her crib

too much at the orphanage with the way it is flat off to one side on the back,

as if she laid on her back, looking off to her left. Maybe there was a wall on

her right side. I do wonder if her cranial situation might be beyond what could

be helped by chiropractic's gentle manipulations. Her head really is shaped like

a pumpkin that didn't get rotated.

BTW: I realized after posting that I hadn't mentioned that Amy is 7 yrs. old.

Kim

>

> Kim have you tried a chiropractor ? one that does cranial work and myfacia -

don't know how to spell it

>

> annie with ds and chronic fatique syndrome and etc - this has helped

>

> her a ton - even her crossing of her eyes - we have allot of work to

>

> do yet but she has been helped so much

>

June 19, 2012

Annie is 10 and we have seen great improvement I don't think it's ever to late dr patti has helped an 80 year old man. Our Jeff had swelling in his skull and he is 20 she has helped him as wellRox

From:

fordhomed ;

To:

<DownSyndromeInfoExchange >;

Subject:

[DownSyndromeInfoExchange] Re: Where do I start?

Sent:

Tue, Jun 19, 2012 10:28:24 PM

I hadn't thought of chiropractic. Interesting that they do cranial adjustments, especially since Amy's head is very mis-shapened. I assume she laid in her crib too much at the orphanage with the way it is flat off to one side on the back, as if she laid on her back, looking off to her left. Maybe there was a wall on her right side. I do wonder if her cranial situation might be beyond what could be helped by chiropractic's gentle manipulations. Her head really is shaped like a pumpkin that didn't get rotated.

BTW: I realized after posting that I hadn't mentioned that Amy is 7 yrs. old.

Kim

>

> Kim have you tried a chiropractor ? one that does cranial work and myfacia - don't know how to spell it

>

> annie with ds and chronic fatique syndrome and etc - this has helped

>

> her a ton - even her crossing of her eyes - we have allot of work to

>

> do yet but she has been helped so much

>

June 20, 2012

I would suggest getting her off gluten (or at least wheat) and possibly sugar.

Check out Dr. ' book Lose the Wheat, Lose the Weight and The Wheat

Belly Diet. While these books discuss weight loss, Dr. also talks about

the scientific studies that support eliminating wheat to control mood disorders.

I know it has done wonders for me in so many ways. I will venture to say you

will see improvements within a few weeks, if not less. Some see results within

days of elimination. It's worth a try.

>

> Hi everyone,

> I have been reading some back posts to try to get some ideas of where to start

to address my child's ADHD type behavior. It's very overwhelming!

>

> Background info:

> We adopted Amy from Hong Kong when she was 18 mos. She has DS and has always

been extremely ACTIVE and LOUD. We have seen positive changes over the years,

for example, she no longer picks up every object in sight to hurl it across the

room. Instead, she picks things up and shoves them in my face while yelling

jibberish I assume means " put this somewhere else " .

>

> Despite homeschooling my other kids, or maybe because of homeschooling the

others, Amy has attended public school up until we pulled her out a few weeks

ago. She will be homeschooled from now on.

>

> To replace ps speech therapy, I took her for a speech eval to get private

speech therapy started. It was the first time in two years that she has had an

eval done that I have sat in on. What I saw was a child whose minds is like a

ping pong ball bouncing all over the room. Amy was not being naughty, defiant,

or uncooperative. She appeared to simply have no control over where her thoughts

landed. She appeared to not have the ability to choose what she focused on. If

she saw something interesting, she had to go touch it right that instant.

Consequently, her speech was determined to be at the level of a two yr. old. Her

expressive speech is pretty much at that level, but I know she has a much larger

database of words she understands than a 2 y.o.

>

> I have not been in favor of medicating her with meds like ritalin to slow her

down. A doctor recommended it back when she was 3 or 4, and we tried Adderall

for one day. Only one day because it made her psycho! It gave her raging OCD,

volatile emotions, and insomnia that made her sob most of the night. Amy is

naturally a super happy child, we we horrified at what that drug did to her!

>

> Now I'm wondering if I should be doing something to address the ADHD type

behavior. My husband is in favor of trying meds again, but I find myself feeling

ill when I think about it. He brother and sisters think it's nuts to try drugs

again.

>

> I see our choices as either trying something in the herbal/natural/dietary

category, or continuing to just accept how she is and work our lives around it.

>

> So, where do I start? There are so many " remedies " out there. How do I know

what is helpful and what is snake-oil? I'm so hesitant to buy anything for fear

of wasting money. My attempts at finding a fish oil/omega supplement failed. She

didn't like how they tasted and wouldn't take them.

>

> Thanks for your help,

> Kim

>

June 20, 2012

Hi Kim, I was about to ask you how old she was. is also 7 and the ping pong type. they couldnt keep her too long at the gen ed classroom because she would go from station to station , yelling on the way, and it would disrupt the class tremendously. she kind of gets better when she already knows the environment. we also tried attention drugs - focalin, adheral didnt work. but procentra made a great difference and she was able to sit still and actually learn - although she doesnt speak much (unless she is p prozac, but that makes her more active), she has probably less than 2yo expressive languag - she is almost reading and has a huge vocabulary that she doesnt use, either. actually most of her behaviour is 2yo. we are giving it a rest on the changing minds protocol because we are soon moving to another country and she was too active and loud on it (just like you described it). i am planning to start each med separetely when we finally settle down. GB never did much for her and she hates the taste. only supp I kept was MSB plus and longvida curcumin. I will be interested reading peoples comments to this. Please keep us updated on your daughter.patEnviado via iPadEm Jun 19, 2012, Ã s 6:28 PM, "fordhomed" escreveu:

I hadn't thought of chiropractic. Interesting that they do cranial adjustments, especially since Amy's head is very mis-shapened. I assume she laid in her crib too much at the orphanage with the way it is flat off to one side on the back, as if she laid on her back, looking off to her left. Maybe there was a wall on her right side. I do wonder if her cranial situation might be beyond what could be helped by chiropractic's gentle manipulations. Her head really is shaped like a pumpkin that didn't get rotated.

BTW: I realized after posting that I hadn't mentioned that Amy is 7 yrs. old.

Kim

>

> Kim have you tried a chiropractor ? one that does cranial work and myfacia - don't know how to spell it

>

> annie with ds and chronic fatique syndrome and etc - this has helped

>

> her a ton - even her crossing of her eyes - we have allot of work to

>

> do yet but she has been helped so much

>

June 20, 2012

i have done that with amanda and her behaviour just got worse. but of course each kid is differentpatSent from my iPhone

I would suggest getting her off gluten (or at least wheat) and possibly sugar. Check out Dr. ' book Lose the Wheat, Lose the Weight and The Wheat Belly Diet. While these books discuss weight loss, Dr. also talks about the scientific studies that support eliminating wheat to control mood disorders. I know it has done wonders for me in so many ways. I will venture to say you will see improvements within a few weeks, if not less. Some see results within days of elimination. It's worth a try.

>

> Hi everyone,

> I have been reading some back posts to try to get some ideas of where to start to address my child's ADHD type behavior. It's very overwhelming!

>

> Background info:

> We adopted Amy from Hong Kong when she was 18 mos. She has DS and has always been extremely ACTIVE and LOUD. We have seen positive changes over the years, for example, she no longer picks up every object in sight to hurl it across the room. Instead, she picks things up and shoves them in my face while yelling jibberish I assume means "put this somewhere else".

>

> Despite homeschooling my other kids, or maybe because of homeschooling the others, Amy has attended public school up until we pulled her out a few weeks ago. She will be homeschooled from now on.

>

> To replace ps speech therapy, I took her for a speech eval to get private speech therapy started. It was the first time in two years that she has had an eval done that I have sat in on. What I saw was a child whose minds is like a ping pong ball bouncing all over the room. Amy was not being naughty, defiant, or uncooperative. She appeared to simply have no control over where her thoughts landed. She appeared to not have the ability to choose what she focused on. If she saw something interesting, she had to go touch it right that instant. Consequently, her speech was determined to be at the level of a two yr. old. Her expressive speech is pretty much at that level, but I know she has a much larger database of words she understands than a 2 y.o.

>

> I have not been in favor of medicating her with meds like ritalin to slow her down. A doctor recommended it back when she was 3 or 4, and we tried Adderall for one day. Only one day because it made her psycho! It gave her raging OCD, volatile emotions, and insomnia that made her sob most of the night. Amy is naturally a super happy child, we we horrified at what that drug did to her!

>

> Now I'm wondering if I should be doing something to address the ADHD type behavior. My husband is in favor of trying meds again, but I find myself feeling ill when I think about it. He brother and sisters think it's nuts to try drugs again.

>

> I see our choices as either trying something in the herbal/natural/dietary category, or continuing to just accept how she is and work our lives around it.

>

> So, where do I start? There are so many "remedies" out there. How do I know what is helpful and what is snake-oil? I'm so hesitant to buy anything for fear of wasting money. My attempts at finding a fish oil/omega supplement failed. She didn't like how they tasted and wouldn't take them.

>

> Thanks for your help,

> Kim

>

June 21, 2012

Actually, that can be a sign that wheat/gluten is in fact the problem. There is

empirical and scientific evidence that withdrawal from wheat/gluten is very

similar to withdrawal from drugs or alcohol (they all affect the same part of

the brain...Dr. addresses this in his books, and he is not the only one).

When I eliminated gluten, I was a mess for days, but because I knew what to

expect, I suffered through it and finally cleaned my system. A child has no idea

why they feel so awful and truly would not be able to manage those withdrawal

symptoms.

> > >

> > > Hi everyone,

> > > I have been reading some back posts to try to get some ideas of where to

start to address my child's ADHD type behavior. It's very overwhelming!

> > >

> > > Background info:

> > > We adopted Amy from Hong Kong when she was 18 mos. She has DS and has

always been extremely ACTIVE and LOUD. We have seen positive changes over the

years, for example, she no longer picks up every object in sight to hurl it

across the room. Instead, she picks things up and shoves them in my face while

yelling jibberish I assume means " put this somewhere else " .

> > >

> > > Despite homeschooling my other kids, or maybe because of homeschooling the

others, Amy has attended public school up until we pulled her out a few weeks

ago. She will be homeschooled from now on.

> > >

> > > To replace ps speech therapy, I took her for a speech eval to get private