New to list

August 13, 2000

<< To get back to my reason for posting what do I do to see if mercury is a

problem with him? >>

Hair element analysis via Doctor's Data lab (not another lab) and use the

" counting rules " you can download to interpret them. You can also do a

fractionated urine porphyrins test through KLine (a standard health plan

lab) though you have to search the archives for how to interpret that one -

it isn't using the norms on the test which are for adults.

Andy Cutler

August 13, 2000

Hi, my name is Rose Manning, I have a 10 year old son, Eddie with Autism

and two girls Sammyrose, 8 and Summer 6.

I'm sorry to be so impatient, I have read several post and have always

believe my son was hurt by his baby shots. As he seemed fine and talked

before his 18 month shots. Also when I was pregnant with him I had two root

canals done although they used no mercury on them. I'm sure the office was

full of it. and then I have spent years breathing my mercury vapors in his

face. My husband and I are currently having all the mercury removed from

our teeth.

To get back to my reason for posting what do I do to see if mercury is a

problem with him?

We are currently doing HBO (Hyperbaric Oxygen Treatments) with him and he

has improved amazingly on his speech, understanding, and behavior. We also

do patterning, creeping and crawling which also work well but not as fast.

We are always willing to try new things as long as it can in no way hurt

him.

Thank you in advance for your response.

Sincerely,

Rose

[ ] Re: DMSA cross reactions?

>I just finnished detox for my twins and there is no problem with cont

>to use the secretin. I added 1mg melatonin at bed time too. It

>helps the brain detox and chelate. My twins are fully recovered!

>Best wishes. Beverly.

>

>> List,

>>

>> My doctor wants to use Chlorella (form of algae) with my son. Does

>anyone

>> know anything about this product and its benefits or non benefits

>as the

>> case may be?

>>

>> We are starting chelation with DMSA. Any problems with cross

>reactions

>> between Chlorella? For that matter are there any problems with

>Secretin and

>> DMSA?

>>

>> Thanks,

>> Kelli

>

September 14, 2000

Hi Rosemary,

I haven't had time to do any posting lately, so here's a belated welcome.

I have an eleven yo son with . He suffered from eczema until we

started working in the immune direction. At that time we tried the

neutralization allergy treatments/rotation diet. It worked wonders for his

skin problem (never came back), it just wasn't enough to keep his brain

functioning.

I imagine the claritin is helping because it is settling down your sons

immune system. Although it may not cross the blood brain barrier, it can

still have effects on parts of the immune system that do have access to the

brain.

I don't think I noticed anyone posting these links, so here are some that

may be of interest.(better explanation on neuroimmune problems)

Dr. Goldbergs testimony is good for a broad overview

http://www.neuroimmunedr.com/What_s_New/Committee_Testimony/committee_testim

ony.html

This is really good for information on this whole area and also on the

NeuroSPECT findings:

Goldberg, M. Frontal and Temporal Lobe Dysfunction in autism and Other

Related Disorders: ADHD and OCD. Alasbimn Journal1(4): July 1999.

http://www.alasbimnjournal.cl/revistas/4/goldberg.htm

You also mentioned an interest in diet, in one of your later posts. This is

the link to Dr. G's diet info

http://www.neuroimmunedr.com/Articles/Autism___PDD/Diet_/diet_.html

This is the type of diet that both of my boys are on.(I also have an 18yo on

treatment for CFS) The dairy products are a major, major problem. They

cannot have them at all. Yet they never had any obvious problem/reaction.

Even though my 11yo's food allergy screen showed that he was moderately to

severely reactive to just about every food, he follows the basic diet with a

few additions. If I followed the test results he would be limited to

something like tuna, sugar and garlic. Like some of the others have said,

it is just a guide. More of an indication of how activated their immune

system is.

For alot more info you can look at www.nids.net and Dr. G's website

www.neuroimmunedr.com

I hope this helps some. If you want to post a question to Dr. G., or if you

want to join our chat on Tues night, you can sign into the conference area

at the neuroimmune site.

Hope that helps

Cheryl

>

> I just joined the list...so, to introduce...our family lives in Western

> Colorado and our 9 yr. old son has been having alot of difficulty with

> focus/concentration issues with schoolwork. A trial with Ritalin proved

> unhelpful. He has been diagnosed with an audio-processing problem and he

> also has alot of allergies (sinus/eczema/borderline asthma). We have

found

> that the anti-histamine, Claritin, helps him to think more clearly on his

> studies; his doctor is puzzled by this since Claritin does not cross the

> blood-brain barrier, though she feels it may be acting as a stimulant.

>

> I am searching for clues/answers about connections between immune system

> deficits and neurological functioning and also for nutritional

> possibilities to try to help my son.

>

> Rosemary

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

September 15, 2000

Welcome Rosemary. I have nothing to offer on the Claritin question, but I

would be interested in comments others may have. Have you tried taking your

son off cow's milk? I think this may excerbate asthma. Some of us on this

list have children on gluten free and casein free (GFCF) diets. Casein is a

protein in cow's milk.

There is an interesting little book called Don't Drink Your Milk, by

Oski, who is (or at least was when the book was published) the Director of

the Department of Pediatrics at Hopkins (not a quack).

Hope this is not all old news to you.

Connie

new to list

>

>I just joined the list...so, to introduce...our family lives in Western

>Colorado and our 9 yr. old son has been having alot of difficulty with

>focus/concentration issues with schoolwork. A trial with Ritalin proved

>unhelpful. He has been diagnosed with an audio-processing problem and he

>also has alot of allergies (sinus/eczema/borderline asthma). We have found

>that the anti-histamine, Claritin, helps him to think more clearly on his

>studies; his doctor is puzzled by this since Claritin does not cross the

>blood-brain barrier, though she feels it may be acting as a stimulant.

>

>I am searching for clues/answers about connections between immune system

>deficits and neurological functioning and also for nutritional

>possibilities to try to help my son.

>

>Rosemary

>

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

May 5, 2001

Welcome, nne!

Sorry you have an RA diagnosis and that you aren't feeling very well. I

think you are wise to ask for a new medication. For one thing, chloroquine

is suspected to possibly have the potential to be more damaging to your eyes

than Plaquenil, and, in addition, if you are still feeling stiff, achy, and

fatigued, it doesn't sound as if it's working very well anyway.

How aggressive is your disease? When did you switch from Plaquenil to

chloroquine? Have you and your doctor discussed the possibility of starting

methotrexate (MTX) and/or Enbrel?

I hope you like it here. This is a wonderful group.

----- Original Message -----

From: " nne Ridley " <marianne_R@...>

< >

Sent: Saturday, May 05, 2001 8:13 AM

Subject: [ ] New to List

>

> Hi everyone, Hope to reap some benefits from this list, as well as share

some. I was diagnosed with RA last fall. I'm on Vioxx and now chloroquin.

I was on Plaquenil, but had a reaction to it. The Plaquenil was working,

but this chloroquin is not working too well. Go back to doc on 5/18 and

going to ask for something different. I am so stiff, achey and fatigued. I

try to do yard work for a day and then suffer for 2 days after. I also work

full time. Any comments on the meds you are using would be appreciated.

>

> nne

May 5, 2001

Hi ,

I started Chloroquine in December, I believe. My memory stinks. My RA mainly

is causing me a great deal of trouble with stiffness, fatigue, hand, wrist and

ankle pains. I'd like to try Methotrexate and hopefully he'll agree with that.

nne

----- Original Message -----

From: Matsumura

Sent: Saturday, May 05, 2001 11:17 AM

Subject: Re: [ ] New to List

Welcome, nne!

Sorry you have an RA diagnosis and that you aren't feeling very well. I

think you are wise to ask for a new medication. For one thing, chloroquine

is suspected to possibly have the potential to be more damaging to your eyes

than Plaquenil, and, in addition, if you are still feeling stiff, achy, and

fatigued, it doesn't sound as if it's working very well anyway.

How aggressive is your disease? When did you switch from Plaquenil to

chloroquine? Have you and your doctor discussed the possibility of starting

methotrexate (MTX) and/or Enbrel?

I hope you like it here. This is a wonderful group.

----- Original Message -----

From: " nne Ridley " <marianne_R@...>

< >

Sent: Saturday, May 05, 2001 8:13 AM

Subject: [ ] New to List

>

> Hi everyone, Hope to reap some benefits from this list, as well as share

some. I was diagnosed with RA last fall. I'm on Vioxx and now chloroquin.

I was on Plaquenil, but had a reaction to it. The Plaquenil was working,

but this chloroquin is not working too well. Go back to doc on 5/18 and

going to ask for something different. I am so stiff, achey and fatigued. I

try to do yard work for a day and then suffer for 2 days after. I also work

full time. Any comments on the meds you are using would be appreciated.

>

> nne

May 6, 2001

I hope you can try the methotrexate, too, nne. You need something to

slow your disease down and to help you feel better.

----- Original Message -----

From: " nne Ridley " <marianne_R@...>

< >

Sent: Saturday, May 05, 2001 5:18 PM

Subject: Re: [ ] New to List

> Hi ,

>

> I started Chloroquine in December, I believe. My memory stinks. My RA

mainly is causing me a great deal of trouble with stiffness, fatigue, hand,

wrist and ankle pains. I'd like to try Methotrexate and hopefully he'll

agree with that.

>

> nne

May 17, 2001

<< He also has a history of ear infections

(he is on his 4th set of tubes and has just recovered from another ear

infection) if that has any bearing. >>

I just wanted to reply to this part. My son had ear infections from the time

he was 2 months old until he was 3.6. The ear infections stopped within a

month of going completely 100% casein free. He had had tubes in his ears,

had taken prophilactic antibiotics and had still continued to get ear

infections. The only thing that stopped them was going completely CF. We

have been CF for 16 months now. He has gone from having at least one ear

infection a month and being on antibiotics about 50-60% of the time to ... in

the last 16 months he has had ONE ear infection and has taken one round of

antibiotics. Nothing short of amazing.

Jody

May 18, 2001

<The ear infections stopped within a month of going completely 100%

casein free.>

I would like to add that after we looked into dairy being a primary

cause of sensory integration problems, I found that most of the milk

allergy sites stated that constant, chronic ear infections was a MAIN

symptom of milk protein intolerance/allergy...headaches/migraines

came in high on the list as well. Most sites on head pain/migraines

list dairy as a major trigger.

.

July 11, 2001

Corinne,

My son has the same eating difficulties that you described. My Developmental

Ped. suggested Feeding Therapy. I have not had a chance to look into it yet,

but I thought I'd mention it to you

incase you want to ask any of the professionals that you speak to in the next

few months.

At my son's initial speech evaluation, the director explained it that because of

his dyspraxia, his signals to the brain would only swallow if his mouth was

completely full. Any thing less

than that in his mouth would not be recognized. So he always had food residue

in his mouth. Also, since he could not move his tongue to move the food around

in his mouth, he tended to mash

it with his tongue to the roof of his mouth and not split it up with his teeth.

Thus, these 2 things made him constantly choke. Or when he would swallow, his

eyes would bug out of his head

(because the amount of food he was trying to swallow was enormous). Anyway,

until we can find time to squeeze in one more therapy (Feeding therapy) we are

talking him thru each meal to keep

him from needing the Heimlich(sp?). Also, the tongue and mouth exercises he

gets at speech are really working and after a year, he can move his tongue to

one side and stick it out too.

Hope this helps!

Liz Dunn, Ridgewood NJ -- , 6 Oro Motor Dyspraxia, Wesley, 4 SID

kokamo4@... wrote:

> Hi, my name is Corinne and I'm new to the list. My 3 year old son was

> diagnosed last Thursday with oral/verbal appraxia. Davey was receiving

> services from EI until he aged out in mid-June. At his 3 year old check up

> the pediatrician said he wasn't autistic decided to have him evaluated by a

> pediatric neurologist just to make sure we weren't missing anything. The

> pediatric neurologist said he wasn't autistic but he has quirky behaviors she

> thought would fall away as soon as he got in some programs with kids his own

> age and to put him in everything possible to get him away from his siblings

> and with kids his own age. He's the youngest of 4, adorable. What have we

> done to him !?!

>

> His speech therapist from EI thought he had autistic behaviors, Davey did

> walk/run on his toes during one session. Dave loves that guy and gets

> excited when he came over. His old speech path thinks he's autistic or PDD.

> I didn't. Since we keep in touch, I told him he was diagnosed with

> oral/verbal apraxia. He didn't know much about it and yesterday said from

> what he's read he doesn't agree with the neurologist. I hadn't heard of

> apraxia until last week. I have a few questions that perhaps some of you can

> answer.

>

> Are there varying degrees of apraxia? From what I've read he's not totally

> apraxic, but he has had a lot of the " flags " . He had trouble nursing as an

> infant due to being tongue tied, we had his tongue clipped a year ago. While

> he smiles, he can't pucker or lick his lips. He's given me more scares with

> his choking, and still does. I've always noticed him sort of straining to

> swallow his food, but not always. Now he seems to have compensated for that

> by putting his head down and extending his chin as he does it. If you're not

> looking for it I doubt you would notice it. He never babbled as an infant.

>

July 11, 2001

Hi this is STacy again, What is a Kaufmann Kit. We have been in speech

therapy for 2+ years and I have never heard of it. Sorry I am asking so

many questions.

>

> Looked at the Kaufman kits and wondering if we should get one of those and

if

> so, which one?

>

> Thanks for listening. Any help would be appreciated.

>

> Sincerely,

>

> Corinne

>

July 11, 2001

hi corrine,

could you give me a general idea of your son's " quirky " behaviors???

thanks...ann

[ ] New to list

> Hi, my name is Corinne and I'm new to the list. My 3 year old son

was

> diagnosed last Thursday with oral/verbal appraxia. Davey was receiving

> services from EI until he aged out in mid-June. At his 3 year old check

up

> the pediatrician said he wasn't autistic decided to have him evaluated by

a

> pediatric neurologist just to make sure we weren't missing anything. The

> pediatric neurologist said he wasn't autistic but he has quirky behaviors

she

> thought would fall away as soon as he got in some programs with kids his

own

> age and to put him in everything possible to get him away from his

siblings

> and with kids his own age. He's the youngest of 4, adorable. What have

we

> done to him !?!

>

> His speech therapist from EI thought he had autistic behaviors, Davey did

> walk/run on his toes during one session. Dave loves that guy and gets

> excited when he came over. His old speech path thinks he's autistic or

PDD.

> I didn't. Since we keep in touch, I told him he was diagnosed with

> oral/verbal apraxia. He didn't know much about it and yesterday said from

> what he's read he doesn't agree with the neurologist. I hadn't heard of

> apraxia until last week. I have a few questions that perhaps some of you

can

> answer.

>

> Are there varying degrees of apraxia? From what I've read he's not

totally

> apraxic, but he has had a lot of the " flags " . He had trouble nursing as

an

> infant due to being tongue tied, we had his tongue clipped a year ago.

While

> he smiles, he can't pucker or lick his lips. He's given me more scares

with

> his choking, and still does. I've always noticed him sort of straining to

> swallow his food, but not always. Now he seems to have compensated for

that

> by putting his head down and extending his chin as he does it. If you're

not

> looking for it I doubt you would notice it. He never babbled as an

infant.

>

> There was a time that he would screw up his face as he was trying to make

> words, he uses a lot of jargon that no one can make sense of. Then he'll

> come out with a statement and you'll never hear it again. He has 170-200

> words, uses them correctly.

>

> We had the worst speech evaluation yesterday. I asked for someone that

was

> experienced with apraxia and they assured me the therapist was. She

wasn't

> experienced with anything, stuck us in this little cell of a room while

there

> was another huge playroom next door, which I suggested we use since no one

> was in there and Davey was " noncompliant " in the cell. As soon as we went

in

> there just totally changed and was happy, playing and then she

wanted

> us back in " her room " with " her things " (Mr. Potato head couldn't come

clipboard

> the whole time going down a list trying to get him to do things for her

> according to her agenda. Had no idea how to engage him or any idea what

she

> needed from him without first consulting her clipboard.

>

> As soon as we went back to the cell he started crying again and saying

> " trucks " because there was construction outside and he loves the trucks.

> They were so close you could almost touch them. The speech therapist said

he

> was " perseverating " on the trucks. I think she was perseverating on being

in

> her cell with her things.

>

> As we were leaving she mentioned she was a temporary there filling in

until

> the new therapist came on board. I spoke to the Director of Rehab

Services

> for the whole hospital and advised her of our miserable and fruitless

> experience, what I had requested in a therapist and what I got.

>

> Insurance will pay for a 2nd opinion. Called the PedNeu. and got some

names,

> going today for another eval but they have no openings for at least 2-3

> months. They will send me home with a home speech kit.

>

> Looked at the Kaufman kits and wondering if we should get one of those and

if

> so, which one?

>

> Thanks for listening. Any help would be appreciated.

>

> Sincerely,

>

> Corinne

July 12, 2001

Hey

You can read about Kaufman and her kits on her website at

www.kidspeech.com. Our therapist uses these kits with my son (),but

you can also order them to use in your home. Many people rave about them!!!

Also - don't apologize for asking questions - we are all in the same boat

here and are all willing and anxious to help!!! When my son was first

diagnosed I was lost, because of people here on this list I am finding my

way......

Carnell

North Carolina

Hi this is again, What is a Kaufmann Kit. We have been in speech

therapy for 2+ years and I have never heard of it. Sorry I am asking so

many questions.

July 12, 2001

I was just curious, was the fact that he walked on his toes suppose

to indicate something? My son walks on this toes pretty often (2 1/2

yrs old), and I just figured it had to do with his sensory

integration disorder(Sensory integration is a soft neurological sign

that can sometimes appear with apraxia). If you know something else,

please let me know.

Alwert

July 12, 2001

Hi ,

Toe walking is often seem in PDD or autism spectrum disorders, but I have

two kids in the spectrum, and neither one ever toe-walked. I also have

heard of kids who did this who are not in the autism spectrum.

What other atypical behaviors does your son display?

Judy Doherty

>I was just curious, was the fact that he walked on his toes suppose

>to indicate something? My son walks on this toes pretty often (2 1/2

>integration disorder(Sensory integration is a soft neurological sign

>that can sometimes appear with apraxia). If you know something else,

>please let me know.

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July 12, 2001

Hi Judy,

My son has been diagnosed with apraxia. He used to like to wear

shoes so I just figure the toe-walking was because he didn't like the

feel of things on this feet. He does it less often all the time.

Sometimes it appears he could be doing it for fun.

His sensory integration disorder was diagnosed as mild to moderate.

I not sure his degree of apraxia, but he probably has 30-50 words+.

I'm not sure that I recognize the " PDD " . Maybe I'm forgetting.

Could you tell me what it stands for?

The things that catch my attention with Braden's behavior would be

his high pain threshold (at times, relating to SI) and that he

sometimes doesn't want to socialize. He just likes to play by

himself.

If you have any ideas, let me know.

Thanks!

Alwert, mother of Braden

July 13, 2001

My son 15, is Brendon!

PDD stands for pervasive developmental disorder, PDD/NOS is the Heinz 57

variety non or all of the above, when they aren't sure exactly...it's a DSM

iV diagnosis, thoughm I think 299.80B (or something near there) and it is

an autism spectrum diagnosis.

BOTH my kids have an unusually high tolerance for pain. Brendon has a lot

of sensory issues, can't stand to have long sleeves, etc. I did SI therapy

at 5-7, not much improvement from it that I could see.

Must fly, Caroline came home from day 2 of summer program with a fever,

took her to the doctor, just viral, but she feels hot and crabby, so must

go attend to her now.

More later...

JD