Re: Re: Vit D & apraxia? Please help

[Guest guest]

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. We tried almost everything, DAN, HBOT, Homeopathy and

Accupunture. Including NV. Doesnt work for him. He gotten worse and weird. And

so far the neurologist yield the most result, that why we drove more than 6

hours to Sacramento 2x / year to see his neurologist.

However, I have not look into PANDA. I will look into it. Yes, he have low grade

fever about a week before the regressed. Also in case I forget to mentioned it,

before he started to regressed, I noticed he was itching all over at night, so I

started giving him anti histamin OTC. And he also wanted to take the Gummy Bear

chewable vitamin from Costco. When I look into the ingredients, looks okay to

me, no gluten (he is allergic to bunch of stuffs, including Gluten), so I I gave

him the vitamin for 2 days. And he started to acting weird.

, I stop all his vitamin after I read the posting of vitamin poisoning. I

suddenly scared that I overload him. And as I stopped the vitamins, and his

neurologist told me to put him back into Strattera (after I told him that taking

him off from Stratera is not a good idea) he suddenly stop the vocal stimming

and suddenly looks more calm and tired. He is more like him self now, after back

to Strattera 3 days, but teacher said he is still not focus and emotional (cry

with no reason).Thats why I know I need to see a good doctor that have knowdlege

in neurological nutrition. But I dont know what is the specialty? When I look

for doctor in the insurance website, what do I look?

Now, his neurologist told me to switch him into new drug, called Tenex/

Guanfacine. We have not started yet. I am nervous.When I researched it, it a

drug the use to control high blood pressure, but they also use it for kids with

ADHD. So I am planning to take his blood pressure before I started him on the

new drugs as a baseline (In case it drop, I know what it was originaly).

I hope I am doing the right thing, or more accurately the doctor doing the right

thing, and this drug will help him.

Thanks for all the input. All is appreciated.

Wedyana

________________________________

From: Alberta <gnomederwear@...>

Sent: Wed, March 2, 2011 1:47:00 PM

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

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. He

>> > >

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

>> > > therapy. I

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

>> > > zinc and

>> > > > carnitine levels. My son had deficiencies in all 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

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

[Guest guest]

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. We tried almost everything, DAN, HBOT, Homeopathy and

> Accupunture. Including NV. Doesnt work for him. He gotten worse and weird.

> And

> so far the neurologist yield the most result, that why we drove more than 6

>

> hours to Sacramento 2x / year to see his neurologist.

>

> However, I have not look into PANDA. I will look into it. Yes, he have low

> grade

> fever about a week before the regressed. Also in case I forget to mentioned

> it,

> before he started to regressed, I noticed he was itching all over at night,

> so I

> started giving him anti histamin OTC. And he also wanted to take the Gummy

> Bear

> chewable vitamin from Costco. When I look into the ingredients, looks okay

> to

> me, no gluten (he is allergic to bunch of stuffs, including Gluten), so I I

> gave

> him the vitamin for 2 days. And he started to acting weird.

>

> , I stop all his vitamin after I read the posting of vitamin poisoning.

> I

> suddenly scared that I overload him. And as I stopped the vitamins, and his

>

> neurologist told me to put him back into Strattera (after I told him that

> taking

> him off from Stratera is not a good idea) he suddenly stop the vocal

> stimming

> and suddenly looks more calm and tired. He is more like him self now, after

> back

> to Strattera 3 days, but teacher said he is still not focus and emotional

> (cry

> with no reason).Thats why I know I need to see a good doctor that have

> knowdlege

> in neurological nutrition. But I dont know what is the specialty? When I

> look

> for doctor in the insurance website, what do I look?

>

> Now, his neurologist told me to switch him into new drug, called Tenex/

> Guanfacine. We have not started yet. I am nervous.When I researched it, it

> a

> drug the use to control high blood pressure, but they also use it for kids

> with

> ADHD. So I am planning to take his blood pressure before I started him on

> the

> new drugs as a baseline (In case it drop, I know what it was originaly).

> I hope I am doing the right thing, or more accurately the doctor doing the

> right

> thing, and this drug will help him.

>

> Thanks for all the input. All is appreciated.

>

> Wedyana

[Guest guest]

Hi ,

Seems that he is fit to 4 of the 5 criteria, i am not so sure with the 5 th one.

" Association with neurological abnormalities (motoric hyperactivity, or 

adventitious movements, such as choreiform movements) " what is that mean?

I remember after 2 yrs with DAN treatments, he regressed so badly, to the point

he lost all his language again, (he lost it before, when he was 18 months and

then got diagnosed with austism) and he was constantly knocking to furniture,

that his knuckles went bad.It finally stop tough after I gave him Candex for

yeast. That's what it triggered me to think got to be something else going on

than autism. I insisted the neurologist at Children Hospital to do a EEg and

hthey found the partial seizure, and after he got treated, he suddenly amde

progress, more than any DAN protocols ever did. But now, after 2 yrs taking

Lamictal, his neourologist took him off from the Lamictal, after his latest EEG

was normal, and he made another progress in speech, and he actuall gain more

weight and get taller more. Then suddenly, he got this weird episode.

This discussion made me think,since almost every treatment he has for autism,

doesnt work, meaning he might have other stuff, like this PANDA ?

 

________________________________

From: Alberta <gnomederwear@...>

Sent: Fri, March 4, 2011 12:28:28 AM

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

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!!!

>

> =====

>

[Guest guest]

Hi Alberta,

I just request to join the support group. Thanks for the info. I  hope I can

find a god knowledgeable doctor arround S California. The last time I look into

the PANDA site, seems all of the doctor outside CA.

 

________________________________

From: Alberta <gnomederwear@...>

Sent: Fri, March 4, 2011 6:54:53 AM

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

 

To find how to have your little guy tested, check out the pandas_autism

group. Really fantastic group of people who have done a lot of research for

their own PANDAS kids -- I know a few of them from other biomed groups --

they're well informed about what tests you can ask your doctor to run to

check for strep and how to instruct your doctor on how to treat it. It

isn't always in the throat so a throat swab may not find it but from what I

understand, there are other tests that could be run and a lot you can do to

help your son.

On Thu, Mar 3, 2011 at 11:59 PM, Wedyana Perera <diana_lauw@...>wrote:

>

>

> 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.

>

>