Re: Vit D & apraxia? Please help

March 2, 2011

Hi All,

I am very interested in this discussion, as my son (8 yrs old, he has apraxia,

autism, ADHD, developmental delay, history of partial seizure) has been

regressing lately. He suddenly transformed to different person, very bad

attention, a lot of vocal stimming (nonsense voices, he usualy very quiet),

super hyper (more than usual hyperness), difficulity sleeping, and all his

austistic trailts (walking in certain unseen patern on the floor, staring on the

corner window, avoiding stepping on rug, walking on the edge of furniture)

suddenly came back full force after 2 years.

When I called his neurologist, he recommended to stop his Straterra (he have een

taking it for 2 years now), and it got worse. Teachers complained that they cant

teach him anything. Super hyper ! So I put him back on his Strattera, and the

last 3 days, stop all his vitamins, except the L- Carnosine and Vit C. And he

was more mellow, no more vocal stimming, very quiet again, but moody, crying

with no reason, and very bad attention.

I ve been trying to figure out what made the changes and regression. Then when I

read the discussion, IÂ wonder ifÂ this might be the cause. I ve been giving

him

vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic 3.6.9 (that

addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and 9) for last 4

months.

I was not sure if this the cause, but I need to see a knowledgeable doctor that

understand the special need of extra vitamins for special kids. Any

recommendation will be very welcome. I live in S. California.So far, everytime I

go to doctor, they kept telling me just to give him regular multi vitamin...???

I am not even sure what kind of specialist I need to see. Any input is welcome.

Thanks

Wedyana

________________________________

From: rimamason <rimamason@...>

Sent: Tue, March 1, 2011 7:05:10 PM

Subject: [ ] Re: Vit D & apraxia?

Â

Hi Alberta,

I really don't know any more than what i've posted in my original message. I

have no idea about a relationship b/t E & D. I'm not even sure about how the D &

K interact, I just know what my dad told me about what he takes.

presently i don't give my son extra D. I would want to do more research, consult

my doctor, and get his levels tested before messing around with supplements. I'm

new to this group and the whole apraxia thing (my son is 17 months old and to

date has not been diagnosed w/apraxia, although he shows MANY of the signs) so

i'm proceeding cautiously...

please keep me (us) posted with whatever you find out!

good luck!

-Rima

> > >

> > > My son (now 5 1/2) was found Vitamin D deficient (part of a battery of

> > tests)

> > > and we have been supplementing him with Vitamin D drops as a result.Ã‚ He

> >

> > > continues to make progress with a combination of supplements and

> > therapy.Ã‚ I

> > > would definitely request testing of your child's Vtiamin D, iron,

> > zincÃ‚ and

> > > carnitine levels.Ã‚ My son had deficiencies in allÃ‚ 4 at one time or

> > another.Ã‚

> > > Best of luck.

> > >

> > > ________________________________

> > > From: rimamason <rimamason@>

> >

> > >

> > > Sent: Sun, February 27, 2011 11:04:59 AM

> > > Subject: [ ] Vit D & apraxia?

> > >

> > > Ã‚

> > > Hi Everyone,

> > >

> > > I think i've seen posts on here about this before, but i was wondering if

> >

> > > there's any data about Vit D and apraxia? or if anyone's had an

> > experience

> > > regarding Vit D and apraxia? any info would be appreciated.

> > >

> > > thanks,

> > > Rima

> > >

March 2, 2011

Hi Wedyana,

We live in northern california and our 10 year old son with ADD,

apraxia, developmental delay and LD, sees a highly regarded pediatric

developmental and behavioral physician (I am also very pleased with

him). He's been around a long time and has many contacts in the

field. You might want to call him and ask for a referral in your

area. His contact information is: Dr. Brad Berman, M.D., F.A.A.P,

925-279-3480 ext. 101. It may take up to a week for a response

because they are swamped & booked out over a year.

Best to you and your son,

Debbie

On Mar 2, 2011, at 9:07 AM, diana m wrote:

> Hi All,

>

> I am very interested in this discussion, as my son (8 yrs old, he

> has apraxia,

> autism, ADHD, developmental delay, history of partial seizure) has

> been

> regressing lately. He suddenly transformed to different person, very

> bad

> attention, a lot of vocal stimming (nonsense voices, he usualy very

> quiet),

> super hyper (more than usual hyperness), difficulity sleeping, and

> all his

> austistic trailts (walking in certain unseen patern on the floor,

> staring on the

> corner window, avoiding stepping on rug, walking on the edge of

> furniture)

> suddenly came back full force after 2 years.

>

> When I called his neurologist, he recommended to stop his Straterra

> (he have een

> taking it for 2 years now), and it got worse. Teachers complained

> that they cant

> teach him anything. Super hyper ! So I put him back on his

> Strattera, and the

> last 3 days, stop all his vitamins, except the L- Carnosine and Vit

> C. And he

> was more mellow, no more vocal stimming, very quiet again, but

> moody, crying

> with no reason, and very bad attention.

>

> I ve been trying to figure out what made the changes and regression.

> Then when I

> read the discussion, I wonder if this might be the cause. I ve been

> giving him

> vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic

> 3.6.9 (that

> addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and

> 9) for last 4

> months.

>

> I was not sure if this the cause, but I need to see a knowledgeable

> doctor that

> understand the special need of extra vitamins for special kids. Any

> recommendation will be very welcome. I live in S. California.So far,

> everytime I

> go to doctor, they kept telling me just to give him regular multi

> vitamin...???

> I am not even sure what kind of specialist I need to see. Any input

> is welcome.

>

> Thanks

>

> Wedyana

>

> ________________________________

> From: rimamason <rimamason@...>

>

> Sent: Tue, March 1, 2011 7:05:10 PM

> Subject: [ ] Re: Vit D & apraxia?

>

> Hi Alberta,

>

> I really don't know any more than what i've posted in my original

> message. I

> have no idea about a relationship b/t E & D. I'm not even sure about

> how the D &

> K interact, I just know what my dad told me about what he takes.

>

> presently i don't give my son extra D. I would want to do more

> research, consult

> my doctor, and get his levels tested before messing around with

> supplements. I'm

> new to this group and the whole apraxia thing (my son is 17 months

> old and to

> date has not been diagnosed w/apraxia, although he shows MANY of the

> signs) so

> i'm proceeding cautiously...

>

> please keep me (us) posted with whatever you find out!

>

> good luck!

> -Rima

March 2, 2011

Hi Debbie,

Thanks for the info. I left a voicemail already, hopefully they will reply.

Actually we have his neorologist, Dr. Chez, Â at Sacramento, and we drove there

2

x a / year for check up. Since we could not find any neurologist here that sees

to get the idea how to treat a special kid. I hate it when doctor told me that

there is no special treatment or what so ever, just give him what the nornal kid

will need and if doesnt work, well too bad. We went to see about 8 neorologist

here and they all clueless..

Agaian, thanks for the info.

Wedyana

________________________________

From: Debbie Lax <gardengirl5@...>

Sent: Wed, March 2, 2011 11:46:33 AM

Subject: Re: [ ] Re: Vit D & apraxia? Please help

Â

Hi Wedyana,

We live in northern california and our 10 year old son with ADD,

apraxia, developmental delay and LD, sees a highly regarded pediatric

developmental and behavioral physician (I am also very pleased with

him). He's been around a long time and has many contacts in the

field. You might want to call him and ask for a referral in your

area. His contact information is: Dr. Brad Berman, M.D., F.A.A.P,

925-279-3480 ext. 101. It may take up to a week for a response

because they are swamped & booked out over a year.

Best to you and your son,

Debbie

On Mar 2, 2011, at 9:07 AM, diana m wrote:

> Hi All,

>

> I am very interested in this discussion, as my son (8 yrs old, he

> has apraxia,

> autism, ADHD, developmental delay, history of partial seizure) has

> been

> regressing lately. He suddenly transformed to different person, very

> bad

> attention, a lot of vocal stimming (nonsense voices, he usualy very

> quiet),

> super hyper (more than usual hyperness), difficulity sleeping, and

> all his

> austistic trailts (walking in certain unseen patern on the floor,

> staring on the

> corner window, avoiding stepping on rug, walking on the edge of

> furniture)

> suddenly came back full force after 2 years.

>

> When I called his neurologist, he recommended to stop his Straterra

> (he have een

> taking it for 2 years now), and it got worse. Teachers complained

> that they cant

> teach him anything. Super hyper ! So I put him back on his

> Strattera, and the

> last 3 days, stop all his vitamins, except the L- Carnosine and Vit

> C. And he

> was more mellow, no more vocal stimming, very quiet again, but

> moody, crying

> with no reason, and very bad attention.

>

> I ve been trying to figure out what made the changes and regression.

> Then when I

> read the discussion, I wonder if this might be the cause. I ve been

> giving him

> vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic

> 3.6.9 (that

> addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and

> 9) for last 4

> months.

>

> I was not sure if this the cause, but I need to see a knowledgeable

> doctor that

> understand the special need of extra vitamins for special kids. Any

> recommendation will be very welcome. I live in S. California.So far,

> everytime I

> go to doctor, they kept telling me just to give him regular multi

> vitamin...???

> I am not even sure what kind of specialist I need to see. Any input

> is welcome.

>

> Thanks

>

> Wedyana

>

> ________________________________

> From: rimamason <rimamason@...>

>

> Sent: Tue, March 1, 2011 7:05:10 PM

> Subject: [ ] Re: Vit D & apraxia?

>

> Hi Alberta,

>

> I really don't know any more than what i've posted in my original

> message. I

> have no idea about a relationship b/t E & D. I'm not even sure about

> how the D &

> K interact, I just know what my dad told me about what he takes.

>

> presently i don't give my son extra D. I would want to do more

> research, consult

> my doctor, and get his levels tested before messing around with

> supplements. I'm

> new to this group and the whole apraxia thing (my son is 17 months

> old and to

> date has not been diagnosed w/apraxia, although he shows MANY of the

> signs) so

> i'm proceeding cautiously...

>

> please keep me (us) posted with whatever you find out!

>

> good luck!

> -Rima

March 2, 2011

Hi Wedyana,

There's many discussions on other boards of symptoms that sound like this

and this sounds like a PANDAS flare, just based on what you described. Has

he had any contact with strep lately? Sore throat, fever? Is he taking any

probiotics? Some probiotics that have strep strains in them can cause

issues in individuals with this condition. It affects both kids on the

spectrum and it can affect NT kids too. You'd need to find a doctor who

specializes in PANDAS to treat it, I hear.

Check out the PANDAS resource network:

http://www.pandasresourcenetwork.com/about-pandas/symptoms.html

The network also has a section on where to find a doctor who treats PANDAS.

Many people have said that regular mainstream doctors don't know how to

treat PANDAS. You could talk to your neurologist about it but I wouldn't

take what he/she says as the final word. When I asked my son's neurologist

about what she knew about strep and how it affects the brain, she said that

strep doesn't affect the brain -- yet, I've read about many documentations

of people who have gotten better after several rounds of very strong

antibiotics.

There is also a PANDAS Autism group that you might want to check out. Lots

of very well-informed people there who are working through treating Lyme,

PANDAS, and autism:

pandas_autism/?yguid=403639154

On Wed, Mar 2, 2011 at 12:07 PM, diana m <diana_lauw@...> wrote:

>

> Hi All,

>

> I am very interested in this discussion, as my son (8 yrs old, he has

> apraxia,

> autism, ADHD, developmental delay, history of partial seizure) has been

> regressing lately. He suddenly transformed to different person, very bad

> attention, a lot of vocal stimming (nonsense voices, he usualy very quiet),

>

> super hyper (more than usual hyperness), difficulity sleeping, and all his

> austistic trailts (walking in certain unseen patern on the floor, staring

> on the

> corner window, avoiding stepping on rug, walking on the edge of furniture)

> suddenly came back full force after 2 years.

>

> When I called his neurologist, he recommended to stop his Straterra (he

> have een

> taking it for 2 years now), and it got worse. Teachers complained that they

> cant

> teach him anything. Super hyper ! So I put him back on his Strattera, and

> the

> last 3 days, stop all his vitamins, except the L- Carnosine and Vit C. And

> he

> was more mellow, no more vocal stimming, very quiet again, but moody,

> crying

> with no reason, and very bad attention.

>

> I ve been trying to figure out what made the changes and regression. Then

> when I

> read the discussion, I wonder if this might be the cause. I ve been giving

> him

> vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic 3.6.9

> (that

> addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and 9) for

> last 4

> months.

>

> I was not sure if this the cause, but I need to see a knowledgeable doctor

> that

> understand the special need of extra vitamins for special kids. Any

> recommendation will be very welcome. I live in S. California.So far,

> everytime I

> go to doctor, they kept telling me just to give him regular multi

> vitamin...???

> I am not even sure what kind of specialist I need to see. Any input is

> welcome.

>

> Thanks

>

> Wedyana

>

> ________________________________

> From: rimamason <rimamason@...>

>

> Sent: Tue, March 1, 2011 7:05:10 PM

> Subject: [ ] Re: Vit D & apraxia?

>

> Hi Alberta,

>

> I really don't know any more than what i've posted in my original message.

> I

> have no idea about a relationship b/t E & D. I'm not even sure about how

> the D &

> K interact, I just know what my dad told me about what he takes.

>

> presently i don't give my son extra D. I would want to do more research,

> consult

> my doctor, and get his levels tested before messing around with

> supplements. I'm

> new to this group and the whole apraxia thing (my son is 17 months old and

> to

> date has not been diagnosed w/apraxia, although he shows MANY of the signs)

> so

> i'm proceeding cautiously...

>

> please keep me (us) posted with whatever you find out!

>

> good luck!

> -Rima

>

> > > >

> > > > My son (now 5 1/2) was found Vitamin D deficient (part of a battery

> of

> > > tests)

> > > > and we have been supplementing him with Vitamin D drops as a result.Â

> He

> > >

> > > > continues to make progress with a combination of supplements and

> > > therapy.Â I

> > > > would definitely request testing of your child's Vtiamin D, iron,

> > > zincÂ and

> > > > carnitine levels.Â My son had deficiencies in allÂ 4 at one time or

> > > another.Â

> > > > Best of luck.

> > > >

> > > > ________________________________

> > > > From: rimamason <rimamason@>

> > >

> > > >

> > > > Sent: Sun, February 27, 2011 11:04:59 AM

> > > > Subject: [ ] Vit D & apraxia?

> > > >

> > > > Â

> > > > Hi Everyone,

> > > >

> > > > I think i've seen posts on here about this before, but i was

> wondering if

> > >

> > > > there's any data about Vit D and apraxia? or if anyone's had an

> > > experience

> > > > regarding Vit D and apraxia? any info would be appreciated.

> > > >

> > > > thanks,

> > > > Rima

> > > >

March 2, 2011

Just one more thought, Wedyana -- are you seeing a DAN doctor? A DAN would

definitely be able to help you out with supplementation and a DAN would know

about PANDAS. The Pandas Autism group mentioned several antibiotics that

can be used to treat persistent infections and would be able to recommend

antibiotics that your DAN can prescribe to treat the PANDAS flare.

On Wed, Mar 2, 2011 at 4:30 PM, Alberta <gnomederwear@...> wrote:

> Hi Wedyana,

>

> There's many discussions on other boards of symptoms that sound like this

> and this sounds like a PANDAS flare, just based on what you described. Has

> he had any contact with strep lately? Sore throat, fever? Is he taking any

> probiotics? Some probiotics that have strep strains in them can cause

> issues in individuals with this condition. It affects both kids on the

> spectrum and it can affect NT kids too. You'd need to find a doctor who

> specializes in PANDAS to treat it, I hear.

>

> Check out the PANDAS resource network:

> http://www.pandasresourcenetwork.com/about-pandas/symptoms.html

>

> The network also has a section on where to find a doctor who treats

> PANDAS. Many people have said that regular mainstream doctors don't know

> how to treat PANDAS. You could talk to your neurologist about it but I

> wouldn't take what he/she says as the final word. When I asked my son's

> neurologist about what she knew about strep and how it affects the brain,

> she said that strep doesn't affect the brain -- yet, I've read about many

> documentations of people who have gotten better after several rounds of very

> strong antibiotics.

>

> There is also a PANDAS Autism group that you might want to check out. Lots

> of very well-informed people there who are working through treating Lyme,

> PANDAS, and autism:

> pandas_autism/?yguid=403639154

>

> On Wed, Mar 2, 2011 at 12:07 PM, diana m <diana_lauw@...> wrote:

>> Hi All,

>>

>> I am very interested in this discussion, as my son (8 yrs old, he has

>> apraxia,

>> autism, ADHD, developmental delay, history of partial seizure) has been

>> regressing lately. He suddenly transformed to different person, very bad

>> attention, a lot of vocal stimming (nonsense voices, he usualy very

>> quiet),

>> super hyper (more than usual hyperness), difficulity sleeping, and all his

>>

>> austistic trailts (walking in certain unseen patern on the floor, staring

>> on the

>> corner window, avoiding stepping on rug, walking on the edge of furniture)

>>

>> suddenly came back full force after 2 years.

>>

>> When I called his neurologist, he recommended to stop his Straterra (he

>> have een

>> taking it for 2 years now), and it got worse. Teachers complained that

>> they cant

>> teach him anything. Super hyper ! So I put him back on his Strattera, and

>> the

>> last 3 days, stop all his vitamins, except the L- Carnosine and Vit C. And

>> he

>> was more mellow, no more vocal stimming, very quiet again, but moody,

>> crying

>> with no reason, and very bad attention.

>>

>> I ve been trying to figure out what made the changes and regression. Then

>> when I

>> read the discussion, I wonder if this might be the cause. I ve been

>> giving him

>> vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic 3.6.9

>> (that

>> addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and 9) for

>> last 4

>> months.

>>

>> I was not sure if this the cause, but I need to see a knowledgeable doctor

>> that

>> understand the special need of extra vitamins for special kids. Any

>> recommendation will be very welcome. I live in S. California.So far,

>> everytime I

>> go to doctor, they kept telling me just to give him regular multi

>> vitamin...???

>> I am not even sure what kind of specialist I need to see. Any input is

>> welcome.

>>

>> Thanks

>>

>> Wedyana

>>

>> ________________________________

>> From: rimamason <rimamason@...>

>>

>> Sent: Tue, March 1, 2011 7:05:10 PM

>> Subject: [ ] Re: Vit D & apraxia?

>>

>> Hi Alberta,

>>

>> I really don't know any more than what i've posted in my original message.

>> I

>> have no idea about a relationship b/t E & D. I'm not even sure about how

>> the D &

>> K interact, I just know what my dad told me about what he takes.

>>

>> presently i don't give my son extra D. I would want to do more research,

>> consult

>> my doctor, and get his levels tested before messing around with

>> supplements. I'm

>> new to this group and the whole apraxia thing (my son is 17 months old and

>> to

>> date has not been diagnosed w/apraxia, although he shows MANY of the

>> signs) so

>> i'm proceeding cautiously...

>>

>> please keep me (us) posted with whatever you find out!

>>

>> good luck!

>> -Rima

>>

>> > > >

>> > > > My son (now 5 1/2) was found Vitamin D deficient (part of a battery

>> of

>> > > tests)

>> > > > and we have been supplementing him with Vitamin D drops as a

>> result.Â He

>> > >

>> > > > continues to make progress with a combination of supplements and

>> > > therapy.Â I

>> > > > would definitely request testing of your child's Vtiamin D, iron,

>> > > zincÂ and

>> > > > carnitine levels.Â My son had deficiencies in allÂ 4 at one time or

>> > > another.Â

>> > > > Best of luck.

>> > > >

>> > > > ________________________________

>> > > > From: rimamason <rimamason@>

>> > >

>> > > >

>> > > > Sent: Sun, February 27, 2011 11:04:59 AM

>> > > > Subject: [ ] Vit D & apraxia?

>> > > >

>> > > > Â

>> > > > Hi Everyone,

>> > > >

>> > > > I think i've seen posts on here about this before, but i was

>> wondering if

>> > >

>> > > > there's any data about Vit D and apraxia? or if anyone's had an

>> > > experience

>> > > > regarding Vit D and apraxia? any info would be appreciated.

>> > > >

>> > > > thanks,

>> > > > Rima

>> > > >

March 2, 2011

Pediatric Endocrinologist!!! We found one here in NY, that I just loved the

second we walked in the door! its so great to find doctors like that. I send

everybody I can to him who even mentions such a need! thats how wonderful he

is!! Find a Ped Endo who can do blood work and tell you for sure which vitamins

are needed and which to stop. Also tell the Neurologist that you started the

meds back up again, since he had said to stop them!!

> > > >

> > > > My son (now 5 1/2) was found Vitamin D deficient (part of a battery of

> > > tests)

> > > > and we have been supplementing him with Vitamin D drops as a result.Ã‚

He

> > >

> > > > continues to make progress with a combination of supplements and

> > > therapy.Ã‚ I

> > > > would definitely request testing of your child's Vtiamin D, iron,

> > > zincÃ‚ and

> > > > carnitine levels.Ã‚ My son had deficiencies in allÃ‚ 4 at one time or

> > > another.Ã‚

> > > > Best of luck.

> > > >

> > > > ________________________________

> > > > From: rimamason <rimamason@>

> > >

> > > >

> > > > Sent: Sun, February 27, 2011 11:04:59 AM

> > > > Subject: [ ] Vit D & apraxia?

> > > >

> > > > Ã‚

> > > > Hi Everyone,

> > > >

> > > > I think i've seen posts on here about this before, but i was wondering

if

> > >

> > > > there's any data about Vit D and apraxia? or if anyone's had an

> > > experience

> > > > regarding Vit D and apraxia? any info would be appreciated.

> > > >

> > > > thanks,

> > > > Rima

> > > >

March 3, 2011

Alberta, my son Tanner regresses on most probiotics too! I thought I was the

only one!!

Wedyana- Does the 5 criteria for PANDAS fit your child??

Frequently Asked Questions

Q. Is there a test for PANDAS?

A. No. The diagnosis of PANDAS is a clinical diagnosis, which means that there

are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic

criteria for the diagnosis of PANDAS (see below). At the present time the

clinical features of the illness are the only means of determining whether or

not a child might have PANDAS.

Q. What are the diagnostic criteria for PANDAS?

A. They are:

1. Presence of Obsessive-compulsive disorder and/or a tic disorder

2. Pediatric onset of symptoms (age 3 years to puberty)

3. Episodic course of symptom severity

4. Association with group A Beta-hemolytic streptococcal infection (a

positive throat culture for strep. or history of Scarlet Fever.)

5. Association with neurological abnormalities (motoric hyperactivity, or

adventitious movements, such as choreiform movements)

Q. What is an episodic course of symptoms?

A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or

tic severity. Tics or OCD which are almost always present at a relatively

consistent level do not represent an episodic course. Many kids with OCD or tics

have good days and bad days, or even good weeks and bad weeks. However, patients

with PANDAS have a very sudden onset or worsening of their symptoms, followed by

a slow, gradual improvement. If they get another strep. infection, their

symptoms suddenly worsen again. The increased symptom severity usually persists

for at least several weeks, but may last for several months or longer. The tics

or OCD then seem to gradually fade away, and the children often enjoy a few

weeks or several months without problems. When they have another strep. throat

infection the tics or OCD return just as suddenly and dramatically as they did

previously.

Q. Are there any other symptoms associated with PANDAS episodes?

A. Yes. Children with PANDAS often experience one or more of the following

symptoms in conjunction with their OCD and/or tics:

1. ADHD symptoms (hyperactivity, inattention, fidgety)

2. Separation anxiety (Child is " clingy " and has difficulty separating from

his/her caregivers. For example, the child may not want to be in a different

room in the house from his/her parents.)

3. Mood changes (irritability, sadness, emotional lability)

4. Sleep disturbance

5. Night- time bed wetting and/or day- time urinary frequency

6. Fine/gross motor changes (e.g. changes in handwriting)

7. Joint pains

Q. My child has had strep. throat before, and he has tics and/or OCD. Does that

mean he has PANDAS?

A. No. Many children have OCD and/or tics, and almost all school aged children

get strep. throat at some point in their lives. In fact, the average

grade-school student will have 2 – 3 strep. throat infections each year. PANDAS

is considered when there is a very close relationship between the abrupt onset

or worsening or OCD and/or tics, and a preceding strep. infection. If strep. is

found in conjunction with two or three episodes of OCD/tics, then it may be that

the child has PANDAS.

Q. Could an adult have PANDAS?

A. No. By definition, PANDAS is a pediatric disorder. It is possible that

adolescents and adults may have immune mediated OCD, but this is not known. The

research studies at the NIMH are restricted to children.

http://intramural.nimh.nih.gov/pdn/web.htm

Let us know how it goes and good luck with everything!!!

=====

March 3, 2011

Hi Wedyana, I don't know if you've seen any of my posts about my kids

-14 years old & Lily -10 years old, but they both have seizure disorders,

autism, apraxia and other conditions (and my son is NOW off his seizure meds and

my daughter may be very soon!!) Both of my children have been seizure free and

have done fantastic in their abilities in speech , awareness, motor skills and

sense of humor on NV and it's approved by my children's neurologist.

My son who was on seizure medication for 9 years prior to NV has had the

first normal EEG in his life since being on NV. I can't even begin to tell you

how happy my husband and I are for both our children now. We have seen more

progress in the past year than we have in their entire life -and the

professionals that work with them feel the same.

I go to a local support group near me for parent's of children that have

seizures and shared about my children. It is difficult to believe how amazing

NV is so not all have tried it yet. The 2 families that have tried NV are now

also shocked that NV stopped the seizures in their kids too -and the one little

girl is walking for the first time!!! She didn't have the ability to walk at

all, and within one week on NV started walking!!

So far all our neurologists approve it. My son's story is on this page

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-seizures/ NV has helped with so many of the things that affect

your son. also, it sounds like he's on alot of supplements, with the NV you

don't need the multi vitamins and that can maybe mess it up from working. also,

what is Straterra a treatment for?

I would be happy to share my experience with you or anyone else that had

questions, and do wish you the best for your child.

Dawn Falley

631-447-0615

> > > >

> > > > My son (now 5 1/2) was found Vitamin D deficient (part of a battery of

> > > tests)

> > > > and we have been supplementing him with Vitamin D drops as a result.Ã‚

He

> > >

> > > > continues to make progress with a combination of supplements and

> > > therapy.Ã‚ I

> > > > would definitely request testing of your child's Vtiamin D, iron,

> > > zincÃ‚ and

> > > > carnitine levels.Ã‚ My son had deficiencies in allÃ‚ 4 at one time or

> > > another.Ã‚

> > > > Best of luck.

> > > >

> > > > ________________________________

> > > > From: rimamason <rimamason@>

> > >

> > > >

> > > > Sent: Sun, February 27, 2011 11:04:59 AM

> > > > Subject: [ ] Vit D & apraxia?

> > > >

> > > > Ã‚

> > > > Hi Everyone,

> > > >

> > > > I think i've seen posts on here about this before, but i was wondering

if

> > >

> > > > there's any data about Vit D and apraxia? or if anyone's had an

> > > experience

> > > > regarding Vit D and apraxia? any info would be appreciated.

> > > >

> > > > thanks,

> > > > Rima

> > > >

March 3, 2011

What is NV?

> >

> > Hi All,

> >

> > I am very interested in this discussion, as my son (8 yrs old, he has

apraxia,

> > autism, ADHD, developmental delay, history of partial seizure) has been

> > regressing lately. He suddenly transformed to different person, very bad

> > attention, a lot of vocal stimming (nonsense voices, he usualy very quiet),

> > super hyper (more than usual hyperness), difficulity sleeping, and all his

> > austistic trailts (walking in certain unseen patern on the floor, staring on

the

> > corner window, avoiding stepping on rug, walking on the edge of furniture)

> > suddenly came back full force after 2 years.

> >

> > When I called his neurologist, he recommended to stop his Straterra (he have

een

> > taking it for 2 years now), and it got worse. Teachers complained that they

cant

> > teach him anything. Super hyper ! So I put him back on his Strattera, and

the

> > last 3 days, stop all his vitamins, except the L- Carnosine and Vit C. And

he

> > was more mellow, no more vocal stimming, very quiet again, but moody, crying

> > with no reason, and very bad attention.

> >

> > I ve been trying to figure out what made the changes and regression. Then

when I

> > read the discussion, I wonder if this might be the cause. I ve been giving

him

> > vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic 3.6.9

(that

> > addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and 9) for

last 4

> > months.

> >

> > I was not sure if this the cause, but I need to see a knowledgeable doctor

that

> > understand the special need of extra vitamins for special kids. Any

> > recommendation will be very welcome. I live in S. California.So far,

everytime I

> > go to doctor, they kept telling me just to give him regular multi

vitamin...???

> > I am not even sure what kind of specialist I need to see. Any input is

welcome.

> >

> > Thanks

> >

> > Wedyana

March 3, 2011

NutriVedi

Sent on the Sprintï¿½ Now Network from my BlackBerryï¿½

[ ] Re: Vit D & apraxia? Please help

What is NV?

> >

> > Hi All,

> >

> > I am very interested in this discussion, as my son (8 yrs old, he has

apraxia,

> > autism, ADHD, developmental delay, history of partial seizure) has been

> > regressing lately. He suddenly transformed to different person, very bad

> > attention, a lot of vocal stimming (nonsense voices, he usualy very quiet),

> > super hyper (more than usual hyperness), difficulity sleeping, and all his

> > austistic trailts (walking in certain unseen patern on the floor, staring on

the

> > corner window, avoiding stepping on rug, walking on the edge of furniture)

> > suddenly came back full force after 2 years.

> >

> > When I called his neurologist, he recommended to stop his Straterra (he have

een

> > taking it for 2 years now), and it got worse. Teachers complained that they

cant

> > teach him anything. Super hyper ! So I put him back on his Strattera, and

the

> > last 3 days, stop all his vitamins, except the L- Carnosine and Vit C. And

he

> > was more mellow, no more vocal stimming, very quiet again, but moody, crying

> > with no reason, and very bad attention.

> >

> > I ve been trying to figure out what made the changes and regression. Then

when I

> > read the discussion, I wonder if this might be the cause. I ve been giving

him

> > vit D ( 2000 IU), EPA ( 1 tab of 200 mg, 300 EPA), 2 tabs of Nordic 3.6.9

(that

> > addtional Vit E 300 IU, EPA 270 mg, dHA 180 mg, other Omega 6, and 9) for

last 4

> > months.

> >

> > I was not sure if this the cause, but I need to see a knowledgeable doctor

that

> > understand the special need of extra vitamins for special kids. Any

> > recommendation will be very welcome. I live in S. California.So far,

everytime I

> > go to doctor, they kept telling me just to give him regular multi

vitamin...???

> > I am not even sure what kind of specialist I need to see. Any input is

welcome.

> >

> > Thanks

> >

> > Wedyana

March 3, 2011

Hi Dawn, Wedyana...I'm sure Wedyana you already are aware of this but it wasn't

until Dawn asked what Strattera was that I recalled it...I don't know why when I

first saw this I was thinking it was for the seizures...please read the side

effects of the drug he was on. No wonder the doctor told you to immediately

pull him off over the phone -there just has to be an alternative for your ADHD 8

year old!! Because unless you think your child is OCD with tics and he fit all

of the criteria for PANDAS which is rare from all I read- this 'kind' of sounds

more like what you wrote is going on -then again I don't know your child. But

again for SURE I'd find an alternative to this drug during your exploration of

the " sudden regression in behavior " -which is listed as a side effect of this

drug!

From the FDA

" Pediatric patients being treated with Strattera should be closely observed for

clinical worsening, as well as agitation, irritability, suicidal thinking or

behaviors, and unusual changes in behavior, especially during the initial few

months of a course of drug therapy, or at times of dose changes, either

increases or decreases. This monitoring should include daily observation by

families and caregivers and frequent contact with the physician. "

Public Health Advisory: Suicidal Thinking in Children and Adolescents Being

Treated With Strattera (Atomoxetine)

9/29/2005

Today the Food and Drug Administration (FDA) directed Eli Lilly and Company

(Lilly), the manufacturer of Strattera (atomoxetine), to revise the labeling for

this product to include a boxed warning and additional warning statements that

alert health care providers to an increased risk of suicidal thinking in

children and adolescents being treated with this drug. FDA also informed Lilly

that it has determined that a Patient Medication Guide (MedGuide), which will

advise patients of the risks associated with Strattera and precautions that can

be taken, should be distributed to patients when Strattera is dispensed.

Strattera is approved for the treatment of Attention Deficit Hyperactivity

Disorder (ADHD) in pediatric and adult patients.

The increased risk of suicidal thinking for this drug was identified in a

combined analysis of 12 short-term (6-18 weeks) placebo-controlled trials (11 in

ADHD and 1 in enuresis [bedwetting]). These 12 trials involved a total of over

2200 patients, including 1357 receiving Strattera and 851 receiving placebo.

The analysis showed a greater risk of suicidal thinking during the first few

months of treatment in those receiving Strattera. The average risk of suicidal

thinking was about 4 per thousand patients treated with Strattera compared to no

events in placebo-treated patients. There was 1 suicide attempt among these

approximately 2200 patients, occurring in a patient treated with Strattera.

Based on these data, FDA has determined that the following points are

appropriate for inclusion in the boxed warning:

* Strattera increases the risk of suicidal thinking in children and

adolescents with ADHD.

* Anyone considering the use of Strattera in a child or adolescent for ADHD

must balance the increased risk of suicidal thinking with the clinical need for

the drug.

* Patients who are started on therapy should be observed closely for

clinical worsening, suicidal thinking or behaviors, or unusual changes in

behavior.

* Families and caregivers should be advised to closely observe the patient

and to communicate changes or concerning behaviors with the prescriber.

Pediatric patients being treated with Strattera should be closely observed for

clinical worsening, as well as agitation, irritability, suicidal thinking or

behaviors, and unusual changes in behavior, especially during the initial few

months of a course of drug therapy, or at times of dose changes, either

increases or decreases. This monitoring should include daily observation by

families and caregivers and frequent contact with the physician.

In addition a MedGuide is being prepared for Strattera to provide directly to

patients and their families and caregivers information about the increased risk

of suicidal thinking in children and adolescents prescribed Strattera. The

MedGuide is intended to be distributed by the pharmacist with each prescription

or refill of a medication.

A similar analysis in adult patients treated with Strattera for either ADHD or

major depressive disorder (MDD) found no increased risk of suicidal ideation or

behavior with use of Strattera.

FDA plans to work closely with Lilly to optimize the safe use of this drug and

implement the proposed labeling changes and other safety communications in a

timely manner.

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsan\

dProviders/DrugSafetyInformationforHeathcareProfessionals/PublicHealthAdvisories\

/ucm051733.htm

All I used for years with my ADHD son was fish oils ProEFA and ProEPA as I've

written many times -and now with NV it's just golden -we have tons of kids

-teens -adults, with ADHD, autism, seizures and a growing list of other

conditions http://pursuitofresearch.org/pursuit-of-research/ on the NV, and with

fish oils for most that is all you need.

=====

March 3, 2011

NV was not created for our population- I discovered it by mistake because of my

son and first shared it here December 2009. As it's just food it has been

approved by all pediatric medical and alternative doctors pretty much across the

board even from day one.

Some wonder why mainly all the info on our website? Once the research validates

what we are seeing which will be in just a few years and I am sure easy enough

to validate quickly based on the immediate results in so many areas - then

you'll see the info all over. I'm encouraging the company to research seizures

first and they are looking for a " world renowned " doctor that they can

collaborate with so if anyone knows of a seizure doctor that is world renowned

that may be interested to speaking to the team behind NV

http://pursuitofresearch.org/endorsed-by-the-chopra-center/ please email me at

lisa@... Again they did not formulate this for our population. The

company that manufactures NV is aware of what I have discovered as well as all

on our fundraising website http://pursuitofresearch.org and as parents and

professionals we are able to share our own experiences -but due to the FDA a

medical claim can not be made until there is clinical research. As each

ingredient in NV is a food it makes it a bit easier too. Most of the

testimonies are from members of this group but it's now expanding out to other

groups and other conditions -even Alzheimer's in an 89 year old! We've now been

using it for just over a year and over one thousand families mainly with

children 2 to teenage.

It's a clean food protein powder in chocolate and vanilla where all the

nutrients 100 percent are from food. Each serving contains ALL of the essential

amino acids and nutrients from food which is the purest form of supplementation.

When you supplement the body may absorb 10 to 30 percent of the nutrient, and

also you can throw the body off balance if you give too much of one nutrient.

When you get nutrients from food it's balanced and the absorption would be

closer to 100 percent. It is GFCF as well as tested free of any heavy metals,

herbicides, pesticides, hormones, genetically modified foods, preservatives,

stimulants, or any synthetic contaminants. I don't know what your child's

condition is but there are numerous SLPs that have a number of clients using it

with their caseload and we are seeing close to 100 percent success -which seems

impossible but it's probably just based in essential nutrients that were either

void or the body was not digesting and utilizing them prior. Because NV is an

isolate and because the nutrients are from food -it's easily digestible and void

of all the main allergins.

Here's from our survey the conditions and areas of surges we are seeing

http://pursuitofresearch.org/pursuit-of-research/

Here's info to share with your child's doctor

http://pursuitofresearch.org/find-a-professional/

History of why I even started using NV with my son Tanner

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-for-\

autism-apraxia-etc/

I LOVE NV- for what it's done for my children -especially my son Tanner. And

for what it's done for so many others at this point.

=====

March 3, 2011

Hi all. As for his seizure , his EEG was normal now. But I keep seeing him

squinting his eyes and wonder if that partial seizure .

Now I am confuse if I should give him the new drug the neurologist want him to

take, guanfacine or tenex. He was calmer now with out meds.

Sent from my iPod

>

> Hi Wedyana, I don't know if you've seen any of my posts about my kids

-14 years old & Lily -10 years old, but they both have seizure disorders,

autism, apraxia and other conditions (and my son is NOW off his seizure meds and

my daughter may be very soon!!) Both of my children have been seizure free and

have done fantastic in their abilities in speech , awareness, motor skills and

sense of humor on NV and it's approved by my children's neurologist.

>

> My son who was on seizure medication for 9 years prior to NV has had

the first normal EEG in his life since being on NV. I can't even begin to tell

you how happy my husband and I are for both our children now. We have seen more

progress in the past year than we have in their entire life -and the

professionals that work with them feel the same.

>

> I go to a local support group near me for parent's of children that have

seizures and shared about my children. It is difficult to believe how amazing

NV is so not all have tried it yet. The 2 families that have tried NV are now

also shocked that NV stopped the seizures in their kids too -and the one little

girl is walking for the first time!!! She didn't have the ability to walk at

all, and within one week on NV started walking!!

>

> So far all our neurologists approve it. My son's story is on this page

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-seizures/ NV has helped with so many of the things that affect

your son. also, it sounds like he's on alot of supplements, with the NV you

don't need the multi vitamins and that can maybe mess it up from working. also,

what is Straterra a treatment for?

>

> I would be happy to share my experience with you or anyone else that had

questions, and do wish you the best for your child.

>

> Dawn Falley

> 631-447-0615

March 3, 2011

Hi Alberta,

Yes he was on probiotic when he was under Dan doctor care, actually he is still

on probiotic until today. Every day, sometimes even 2 x / day. He used to have

problem with constipation and bad stool ( either loose, hard, or weird color, or

he will go like 7 times in a day ) before the probiotic. He was healthier ( he

used to be sick every other day) so now whole family is taking probiotic now.

I am not sure if he started to regress after the probiotic or after other

stuffs. He went through almost every protocol they have, including chelation. He

was on 2 different kind, the Dmsa and TDMS I think. Both doesn't work, after 2

yrs and thousand dollars later, he gotten worse.

I look into the panda website, and the doctors list are very limited.mostly east

coast and florida. Any one know one on California ?

Any one?

Thanks again.

Oh no, I look into his probiotic, dr. Ohhira, and I saw streptococcus

thermophilus as one of the ingredient. I think I will switch him back to his old

one. Made by ethical nutrients, intestinal care df. I didnt see any word similar

to strep on the ingredients

Sent from my iPod

On Mar 3, 2011, at 10:16 AM, Alberta <gnomederwear@...> wrote:

> I wonder if the DAN gave him a probiotic then that triggered a possible

> first PANDAS flare. I'm just curious now -- but did the DAN put your son on

> a probiotic at the time when he got worse? (I do not know if my kids are

> PANDAS kids and I've been quite concerned about certain probiotics -- to the

> point right now where I'm a bit paranoid).

>

> On Thu, Mar 3, 2011 at 10:50 AM, diana m <diana_lauw@...> wrote:

>

> >

> > Hi Alberta and ,

> >

> > Thanks for the suggestion. Yes, we took him to DAN doctors years ago, when

> > he

> > was 4 yrs old ( he is 8 now). And he gotten worse actually. After 2

> > different

> > DAN doctors (yeach, I tought I needed to see more expensive doctor to help

> > him)

> > still no result.

March 4, 2011

If he regresses on most probiotics, then he's got issues with probiotics and

likely some bacteria that shouldn't be there. PANDAS are triggered by

probiotics with strep strains in them.

On Thu, Mar 3, 2011 at 2:29 PM, kiddietalk <kiddietalk@...> wrote:

>

> Alberta, my son Tanner regresses on most probiotics too! I thought I was

> the only one!!

>

> Wedyana- Does the 5 criteria for PANDAS fit your child??

>

> Frequently Asked Questions

>

> Q. Is there a test for PANDAS?

>

> A. No. The diagnosis of PANDAS is a clinical diagnosis, which means that

> there are no lab tests that can diagnose PANDAS. Instead clinicians use 5

> diagnostic criteria for the diagnosis of PANDAS (see below). At the present

> time the clinical features of the illness are the only means of determining

> whether or not a child might have PANDAS.

>

> Q. What are the diagnostic criteria for PANDAS?

>

> A. They are:

>

> 1. Presence of Obsessive-compulsive disorder and/or a tic disorder

> 2. Pediatric onset of symptoms (age 3 years to puberty)

> 3. Episodic course of symptom severity

> 4. Association with group A Beta-hemolytic streptococcal infection (a

> positive throat culture for strep. or history of Scarlet Fever.)

> 5. Association with neurological abnormalities (motoric hyperactivity, or

> adventitious movements, such as choreiform movements)

>

> Q. What is an episodic course of symptoms?

>

> A. Children with PANDAS seem to have dramatic ups and downs in their OCD

> and/or tic severity. Tics or OCD which are almost always present at a

> relatively consistent level do not represent an episodic course. Many kids

> with OCD or tics have good days and bad days, or even good weeks and bad

> weeks. However, patients with PANDAS have a very sudden onset or worsening

> of their symptoms, followed by a slow, gradual improvement. If they get

> another strep. infection, their symptoms suddenly worsen again. The

> increased symptom severity usually persists for at least several weeks, but

> may last for several months or longer. The tics or OCD then seem to

> gradually fade away, and the children often enjoy a few weeks or several

> months without problems. When they have another strep. throat infection the

> tics or OCD return just as suddenly and dramatically as they did previously.

>

> Q. Are there any other symptoms associated with PANDAS episodes?

>

> A. Yes. Children with PANDAS often experience one or more of the following

> symptoms in conjunction with their OCD and/or tics:

>

> 1. ADHD symptoms (hyperactivity, inattention, fidgety)

> 2. Separation anxiety (Child is " clingy " and has difficulty separating from

> his/her caregivers. For example, the child may not want to be in a different

> room in the house from his/her parents.)

> 3. Mood changes (irritability, sadness, emotional lability)

> 4. Sleep disturbance

> 5. Night- time bed wetting and/or day- time urinary frequency

> 6. Fine/gross motor changes (e.g. changes in handwriting)

> 7. Joint pains

>

> Q. My child has had strep. throat before, and he has tics and/or OCD. Does

> that mean he has PANDAS?

>

> A. No. Many children have OCD and/or tics, and almost all school aged

> children get strep. throat at some point in their lives. In fact, the

> average grade-school student will have 2 – 3 strep. throat infections each

> year. PANDAS is considered when there is a very close relationship between

> the abrupt onset or worsening or OCD and/or tics, and a preceding strep.

> infection. If strep. is found in conjunction with two or three episodes of

> OCD/tics, then it may be that the child has PANDAS.

>

> Q. Could an adult have PANDAS?

>

> A. No. By definition, PANDAS is a pediatric disorder. It is possible that

> adolescents and adults may have immune mediated OCD, but this is not known.

> The research studies at the NIMH are restricted to children.

> http://intramural.nimh.nih.gov/pdn/web.htm

>

> Let us know how it goes and good luck with everything!!!

>

> =====

>

March 4, 2011

The characteristics Wedayna described about walking in unseen patterns on

the floor and walking on the edges of things is classified as OCD if he's

doing it repeatedly.

Tics can occur in vocal forms, too. My dad had this in his early 40's to

early 50's. Nonsensical sounds. I wondered about these for a long time,

why he made certain sounds that made no sense -- over and over again. These

are vocal tics. When I talked to my son's assessment team about it (the

assessment team comprised of a neurologist who specializes in autism, a

psychologist, a developmental pediatrician, and a speech pathologist) and

they agreed that this type of behavior is a tic. He said " made up " words

that had no meanings over and over. Other than that my dad was lucid and a

good accountant...he had very good judgement and had no psychological

problems (he wasn't talking to imaginary people). He was just compelled to

make non-sensical sounds with his mouth (he was able to speak perfectly

clearly). A tic doesn't have to be just an eye twitching or blatant

choreform movements. It can and does take the form of strange non-sensical

vocalizations in some individuals. It can also take the form of constant

throat clearing. A tic does not have to be a tic that you can see...it can

be one that you can hear.

The fact that some symptoms came back in full force after two years of

getting better -- it just sounds a lot like PANDAS from the description of

what's going on.