Re: and

June 28, 2001

Have you also tested for celiac? It's very common but not always commonly

tested for so I had to ask. US gastros still don't realize how common it is or

how varied the symptoms can be.

in IL

[ ] and

Just wanted to throw my 2 cents in regarding your appt with a gastro.

A little background first-my son Keeg has had MANY gastro issues

including failure to thrive and constipation/diarrhea. We have seen a

gastro for close to 2 years now. We have run several tests including

tests for cystic fibrosis, malabsorption, vitamin and mineral panels,

thyroid panels, nutritional panels, calorie counts (several times-

Keeg eats approx 1800 calories per day-NO problem there LOL), and

stool cultures. All tests were normal. Keeg has been on zyme (since

may 25) and pep (since june 1) one capsule per day. We have seen our

first formed stool ever-which is a huge feat for Keeg because it was

always thick and sticky stools (sorry for the vivid description).

Next week we have to bring Keeg back in for a weight check to see how

he's doing. If no weight gain, then our gastro wants to do some

pancreatic testing. This is what she told me--our first step would be

to take Keeg off the enzymes for a week or the tests wouldn't be

accurate. Next, we would do a stool culture for fat--if there is fat

in the stool that indicates a pancreatic issue (my understanding).

our next step would be a small bowel biopsy and secretin. Now, that

scared the life out of me so I talked with my son's developmental ped

(who I trust completely). She explained that they would put Keeg to

sleep, put and IV in and explore the bowel. When they got to where

the pancreas and intestine meet, the doc's would then put in secretin

I.V. The secretin should stimulate the pancreas to dump out a whole

bunch of digestive enzymes. If we don't see that then we know there's

a pancreatic issue. Which, she explained would be treated with

enzymes. It is an invasive procedure but your child would be asleep.

Well, I hope I've helped some-I am definitely not an expert but am

learning every day. I will keep you posted after the weight check and

let you know if we do the test. If you have any questions, please

feel free to e-mail me and I'll answer what I can. Take care. Kerry

June 28, 2001

I have a copy of a 150 page Word document titled: A Comprehensive

Guide to Managing Autism, by Willis S. Langford

It has more of a technical angle but contains a lot of information on

how the gut systems work in relation to autism. It does cover enzymes

and explains how they might be helpful. He feels enzymes are a key

component to healing the body. However, in the paper he is big on HCL

to enhance the body's natural enzyme systems. I wrote him about plant

based enzymes and specifically Peptizyde and Zyme Prime. He visited

the web site and I had made a great choice in including these in our

recovery and nutrition program. His paper mentions another product

Spectrazyme as a good strong all around formulation, but he said the

HNI ones were very good and he would include them in his next

version. So you can read through it and see if there is anything that

will help you.

You guys seem to be looking for more technical information as you

analyze all the results from your tests. I was going to search

through this, but then thought that you probably know what would be

more helpful that I. It also includes sections on: the immune system,

leaky gut, digestion, serotonin, GABA, metals, all your favorite

supplements, pH, secretin, HCL, biochemical observations and

reactions, Phenol-sulfotransferase Deficiency (PST) and much more. If

you've heard about it with autism, it is in here!

If you would like me to email you a copy, please let me know. It

takes a couple minutes to download so I didn't want to just send it

and tie up your line if you aren't interested.

.

P.S. If anyone else would like a copy, send me an email with Langford

paper in the subject area. No problem at all.

June 28, 2001

> Have you also tested for celiac? It's very common but not always

> commonly tested for so I had to ask. US gastros still don't realize

> how common it is or how varied the symptoms can be.

,

We have not had the celiac tests performed (either blood or villi

sample). Since Ethan has been GF for over 3 months, the tests won't be

very accurate... and I don't think we're willing to re-introduce gleuten

right now.

We are well aware of what celiac disease is. Last Friday, had her

final tests performed for Celiac disease (both blood and villi sample

during an upper endoscopy). We won't have the results until next week.

At a minimum, is at least gleuten intolerant.

-eric & laura

June 29, 2001

Kerry- Go to NAET.com. You can turn on the metabolic enzymes that your child

is missing. I had a child who supposedly could not utilize the peristolic

action of his gut. He could not have a bowel movement on his own. They even

went so far as to try to dilate the rectum every night. With one NAET

clearing this child had his first bowel movement on his own at 21/2. His

problem was food allergies that are now totally eliminated with NAET.

Constipation can be a way of preventing what the body perceivces as toxins

from entering the colon. It's like the body says-this stuff will kill me and

I cannot let it pass.

September 20, 2001

Hi . We saw only a nurse practioner at Children's too. She

gave us a letter of diagnosis right after she examined my son. Our

insurance company (One Health Plan) didn't approve the treatment. So

we decided to go ahead and pay from our pocket.

With Children's, we were supposed to receive a helmet tomorrow,

September 20. Since we didn't want to wait for 6-7 weeks for the

molding appointment, we went to Dr. Paige at the Virginia Mason. We

had to wait for two weeks for the initial appointment with him. But

he sent us to an orthotic clinic in Tacoma for molding on that

afternoon, and our son has been wearing a helmet since August 21. We

are so happy that we could start the treatment more than four weeks

earlier since we've noticed quite improvement in four weeks.

Rieko + Kozy (8 months old)

Seattle, WA

PS

Hi . I'm so happy to know that is helmet free now!

> Hi ,

>

> We had no problem whatsoever with our insurance. We go to Group

Health

> Eastside Primary Care and our pediatrician referred us to

Children's. They

> sent the authorization to Children's and it worked out great.

>

> A couple of weeks after we were seen at Children's by Dr.

Cunningham, we

> received a letter of diagnosis. If you don't receive a letter

within a

> couple of weeks, you might call them and ask for one just so you

have some

> documentation for yourself. I never had to present mine but it was

nice to

> have just in case.

>

> It went very smoothly for us.

>

> & (11 months)

> local helmet 4/26/01 - 9/6/01

> Redmond, WA

>

______________________________________________________________________

__

>

______________________________________________________________________

__

>

> Message: 4

> Date: Sat, 15 Sep 2001 16:20:49 -0000

> From: cmfaucher@y...

> Subject: Re: Children's Hospital Seattle - cmfaucher

>

> I just wanted to thank you for your response to my message

concerning

> my son and his helmet through Children's. I was wondering if you

had

> any problems getting your sons helmet covered through insurance.

Our

> pediatrician referred us to Children's and we saw the nurse

> practicioner but never actually saw a doctor. I was wondering what

> your experience was like and(if I have to do an appeal to our

> insurance in order to get this covered) is it imperative to have a

> doctors diagnosis? Please let me know. Thank you....

September 21, 2001

Happy birthday !!! He must be destined for greatness, he

shares the same birthday as my now 3 year old son Patch! Hope you

had a great day!

Niki

Kaylie & Danny (STAR grads) and I can't forget and Patch

Phila., PA

> Rieko, that is interesting that you guys both saw a nurse

practitioner! We

> saw a doctor, and he was the director of the Craniofacial Clinic.

I wonder

> if they're getting so many cases now that they have changed the way

they do

> the appointments. We went clear back in February.

>

> & (I'm one year old TODAY!)

> Helmet worn 4/26/01 - 9/6/01

> Redmond, WA

>

______________________________________________________________________

__

>

______________________________________________________________________

__

>

> Message: 25

> Date: Thu, 20 Sep 2001 00:42:16 -0000

> From: riekotonn@e...

> Subject: Re: and

>

> Hi . We saw only a nurse practioner at Children's too.

February 14, 2002

i only wish the best for you and your family shelly. kathy in il good

luck!!!

March 14, 2002

I was just wondering how it went today when you picked up 's

helmet. How are the two of you adjusting to it? Let us know when

you get a chance!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Christi, Marci, , and Debbie;

>

> Thanks so much for the welcome. I'm glad to know I'm not alone

with my feelings.

>

> I got the call today ....... ................The helmet is in. We

pick it up tomorrow. How exciting and scary. Is there anything I

need to know or ask at pickup?

>

> thanks

>

> (MOM2SHANNON)

March 14, 2002

Hi, :

My son has the same problem with his helmet, but when we started in

January with it, this

movement was bigger than now. That is, our orthotist told us that 's head

was very flat (like

your daughter's) and the helmet needed this big gap to let his head grow

rounded. This must be true

because in the last 2 months of wearing the helmet 's head's much more

rounded and the movement

has almost corrected at all. Don't worry, but speak with your orthotist in

order to cut a bit the

front of the helmet . I think it is a bit long, that because it rests on the

bridge of 's

nose.

Good luck!

Estrella (mum to )

Spain

March 14, 2002

Estrella

Thanks that makes me feel a bit better. I called the orthist no one was in but they said to come in tomorrow in the mean while I'm going to leave it on her. Ive been adjusting it often which I think is beginning to irritate her but so far so good on the red spots.

thanks

(MOM2SHANNON)

Re: Re: and

Hi, :My son has the same problem with his helmet, but when we started in January with it, thismovement was bigger than now. That is, our orthotist told us that 's head was very flat (likeyour daughter's) and the helmet needed this big gap to let his head grow rounded. This must be truebecause in the last 2 months of wearing the helmet 's head's much more rounded and the movementhas almost corrected at all. Don't worry, but speak with your orthotist in order to cut a bit thefront of the helmet . I think it is a bit long, that because it rests on the bridge of 'snose.Good luck!Estrella (mum to )SpainFor more plagio info

March 14, 2002

Debbie

Yes, is in the NICband(a spin-off of the StarBand). Sorry I have no idea how to send the pic's jpg (I am completely computer illiterate)

The pic's showed a gap above her left eye and how low the front of the band goes when it moves forward.

I'm concerned about the gap because there isn't one on the right. I'm afraid when her head starts to grow it will fill into that gap.

From all the responses I got I decided to leave the band on today. We will see the orthist tomorrow, in the meanwhile I'll keep adjusting the position of the band.

I'll let you know how it goes.

(MOM2SHANNON)

Re: and

HI :I'm sorry, but I cannot open those pictures, any chance you could re-send them as jpegs? My silly computer isn't the greatest .But it is quite common for bands to be pretty loose in the beginning, esp. during the first week or 2. They make them loose to allow for some growth, otherwise, the child could outgrow the bands rapidly & need a 2nd band. I would suggest giving it a week or maybe even 2 wks -- if the band is still too loose, then give your orthotist a call - he could probably add some pad to the inside of the band to adjust for the looseness. has a STARband right (or the NICband, same thing)?Debbie Abby's mom DOCgradMI> > > We pick up 's helmet and > > Its not going great at all. There hasn't been any red marks that haven't cleared with in a hour, but there's a lot of movement. It doesn't seem to fit right. I attached pic's (not the greatest quality but I wanted to get opinions). There's a big gap on the right front. In one of the pic's it shows how it moves it almost rests on the bridge of her nose. Anyone else have this trouble. I hope all this can be corrected I'm very disappointed. > > Take care> > (MOM2SHANNON)> > The last shot is her b4 picsFor more plagio info

March 14, 2002

Hi ,

I checked out the pictures and I couldn't really tell if it looked like a bad

fit or not. I would say that the helmets usually do fit fairly loosely at

first and then tighten slightly as the baby's head grows. It is not uncommon

for the helmets to come down to the top of the eyebrows, however, if they

band is slipping past the eyebrows then you might need to run back in to see

the ortho for an adjustment. We had that exact problem with our helmet. We

went back in the very next day and he shaved some off the front and the

problem was solved! Definitely if you are concerned about the fit you should

give your ortho a ring and ask for him to explain the reasoning behind the

fit to your satisfaction.

Marci (Mom to )

Oklahoma

March 15, 2002

I'm concerned about the gap because there isn't one on the right. I'm afraid when her head starts to grow it will fill into that gap.

:

This is actually quite common with the bands. The gap is there so that the head CAN grow into that space. Many (most) plagio babies with the classic "parallelogram" head shape have a slight bossing on the forehead, opposite of the flattened back side. Make sense? If you look at from the top of her head, you will probably see it. For some, it's not very obvious, but it's there. Double check with your ortho tomorrow!

Let us know what you find out!

Kendra

Re: and

HI :I'm sorry, but I cannot open those pictures, any chance you could re-send them as jpegs? My silly computer isn't the greatest .But it is quite common for bands to be pretty loose in the beginning, esp. during the first week or 2. They make them loose to allow for some growth, otherwise, the child could outgrow the bands rapidly & need a 2nd band. I would suggest giving it a week or maybe even 2 wks -- if the band is still too loose, then give your orthotist a call - he could probably add some pad to the inside of the band to adjust for the looseness. has a STARband right (or the NICband, same thing)?Debbie Abby's mom DOCgradMI> > > We pick up 's helmet and > > Its not going great at all. There hasn't been any red marks that haven't cleared with in a hour, but there's a lot of movement. It doesn't seem to fit right. I attached pic's (not the greatest quality but I wanted to get opinions). There's a big gap on the right front. In one of the pic's it shows how it moves it almost rests on the bridge of her nose. Anyone else have this trouble. I hope all this can be corrected I'm very disappointed. > > Take care> > (MOM2SHANNON)> > The last shot is her b4 picsFor more plagio info

March 15, 2002

Hi Kendra,

There isn't any visible prominence on her forehead. That's why I was concerned but maybe like you said, it may not be obvious. We'll find out tomorrow.....Thanks for caring

(MOM2SHANNON)

Re: and

HI :I'm sorry, but I cannot open those pictures, any chance you could re-send them as jpegs? My silly computer isn't the greatest .But it is quite common for bands to be pretty loose in the beginning, esp. during the first week or 2. They make them loose to allow for some growth, otherwise, the child could outgrow the bands rapidly & need a 2nd band. I would suggest giving it a week or maybe even 2 wks -- if the band is still too loose, then give your orthotist a call - he could probably add some pad to the inside of the band to adjust for the looseness. has a STARband right (or the NICband, same thing)?Debbie Abby's mom DOCgradMI> > > We pick up 's helmet and > > Its not going great at all. There hasn't been any red marks that haven't cleared with in a hour, but there's a lot of movement. It doesn't seem to fit right. I attached pic's (not the greatest quality but I wanted to get opinions). There's a big gap on the right front. In one of the pic's it shows how it moves it almost rests on the bridge of her nose. Anyone else have this trouble. I hope all this can be corrected I'm very disappointed. > > Take care> > (MOM2SHANNON)> > The last shot is her b4 picsFor more plagio info

March 15, 2002

Marci,

I praying for a quick shave and problem solved. I'll let you know.

(MOM2SHANNON)

Re: Re: and

Hi ,I checked out the pictures and I couldn't really tell if it looked like a bad fit or not. I would say that the helmets usually do fit fairly loosely at first and then tighten slightly as the baby's head grows. It is not uncommon for the helmets to come down to the top of the eyebrows, however, if they band is slipping past the eyebrows then you might need to run back in to see the ortho for an adjustment. We had that exact problem with our helmet. We went back in the very next day and he shaved some off the front and the problem was solved! Definitely if you are concerned about the fit you should give your ortho a ring and ask for him to explain the reasoning behind the fit to your satisfaction.Marci (Mom to )OklahomaFor more plagio info

April 16, 2003

>Yeah, L & C and company ate about 15lbs of beef a day while pushing up the

>Missouri River. While I'm not positive, I believe this was in Pemican form

>since it's lightweight and preserved and was a common staple of the day

>for trappers and Indians traveling in the part of the world. 15lbs of

>beef would be about 5lbs of pemican.

In the book, it sounds like they really liked to shoot animals, and there were

plenty around. When was on his own one day, he just shot a buffalo and

ate the hump, marrow, and tongue. They did dry some meat at one point. But

they wasted a lot (or rather, they gave it back to the scavengers!).

>Anthropologists believe early humans in Africa were not always noble

>hunters but also scavangers and were able to use stone tools to break open

>large animals bones left over from predator kills. So there was a ready

>source of nutrients just by listening for the nightly lion kills and

>coming by the next morning and cracking open the large marrow bones that

>were left, just as the Indians did with the buffalo. The modern expression

>of this would be broth, or soup.

Sounds like the Indians did too. Especially they liked drowned buffalo,

which were abundant in the spring. One thing I liked about the book is

Sacagawea was basically gathering and eating just about anything the whole

trip, to nourish her and her baby.

>

Heidi S

May 28, 2006

April,

If you are concerned about the 8 hour dosing schedule, why don't you

just give it every 4 hours without your doctor's approval? I cannot

imagine he/she can give a legitimate reason for refusing the every 4

hour option. All I seem to hear is 'not necessary'

or 'inconvenient'.

Not that I encourage deception with our DAN! doctors (God knows we

need their support), but you are entirely capable of making that

change without their input. How are they to know unless you discuss

it with them?

Just a thought. If this current schedule works just fine for you;

ignore what I just suggested.

Pam

>

> weighs 65 lbs.

> Oral DMSA and ALA

> 300mg DMSA and 50 mg. ALA every 8 hrs. 3 days on 11 days off. I

know

> everyone one this board probably uses every 4 hours but our DAN!

doctor

> won't do that.

> Diet : Has been horrible since going GFCF since 2y3m old. He is

now

> 8 1/2 years old. He was GF til 2 years ago. He would never

expand his

> diet. Even therapists helped. Once again his OT that he has had

for a

> year is going to work on food issues this summer. He is still

CF.

> I am not consistant with most of the supplements. He gets

magnesium

> and pro mineral support everyday. I just started using L-

glutithione

> again. Put him back on No-Phenol. He has to take Benefiber.

> Yeast Protocal? I don't have one. When he was younger I could

tell

> yeast was a problem. Now, I am not sure.

> Approval? I go through 's DAN! doctor so I can get it paid

for

> by Medicaid. I don't pay for any of it.

> April

>

May 28, 2006

April,

That's way too high a dose of DMSA even for an adult. Does it make sense to do

something you don't have to pay for that will probably make things worse? As

someone else mentioned you can cut way back on the dose and dose every three

hours (ALA's half life is 3 hours, DMSA's in 4 hours, easier to dose both

together. You need not tell the doc until he notices the improvements. Andy

Cutler recommends 1/8-1/2 mg per lb, so the highest your son should be taking is

33 mg every 3 hours. By dosing every 8 hours you run a high risk of

redistributing the toxins into the brain rather than chelating them out of the

body.

What are the foods he'll actually eat?

S S

weighs 65 lbs.

Oral DMSA and ALA

300mg DMSA and 50 mg. ALA every 8 hrs. 3 days on 11 days off. I know

everyone one this board probably uses every 4 hours but our DAN! doctor

won't do that.

Diet : Has been horrible since going GFCF since 2y3m old. He is now

8 1/2 years old. He was GF til 2 years ago. He would never expand his

diet. Even therapists helped. Once again his OT that he has had for a

year is going to work on food issues this summer. He is still CF.

I am not consistant with most of the supplements. He gets magnesium

and pro mineral support everyday. I just started using L-glutithione

again. Put him back on No-Phenol. He has to take Benefiber.

Yeast Protocal? I don't have one. When he was younger I could tell

yeast was a problem. Now, I am not sure.

Approval? I go through 's DAN! doctor so I can get it paid for

by Medicaid. I don't pay for any of it.

April

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

June 17, 2009

Hi, Sheila:

" would it give me dry eyes and mouth " Yes, and the dry eyes and mouth are just

one manifestation of " Sjogren's-like Syndrome " that affects most people with AS

and related conditions. This greatly affects the peripheral immune function.

The shingles are due to " ANERGY; " exhaustion of the peripheral immune system due

to fighting off primary infection(s).

These arthritides are systemic, and especially 'polyarthritis' due to the

beasties we unleash from our portable sewers. Address this issue and you will

heal yourself. Extended water fast--try six or seven days and then eat no

starches or fried foods. Nothing made from flour and nothing soluble like

potatoes or corn no eggplant especially like baba ganoughe and no garbanzos like

hummus -- two of my favorite foods (SIGH). In fact you can test everything with

iodine before eating--even improperly harvested (green) nectarines have too much

starch.

Regards,

From: browneyes9017 <browneyes9017@...>

Subject: rheumatic and

rheumatic

Date: Wednesday, June 17, 2009, 11:25 AM

and and everyone: I was told it could be fibromyalgia/ Chronic

Fatigue Syndrome etc. But after researching my symptoms after all these years it

just doesn't quite fit the picture of this illness. I asked if I was tested for

a spondylosis or reiter's etc. and I wondered if there is a test for it and

would it give me dry eyes and mouth and my salivary glands swelled up also. My

muscles ache so bad and it's hard to walk and now my fingers are starting to

hurt , my lower back near the tailbone aches and it feels like it actually moves

and cracks and my neck hurts and jaw .It seems like every part of my body is

affected and I wonder if a rheumatic condition could do this? I also developed

thyroid condition soon after I got sick(Graves Disease).Somehow I developed

shingles too... I also wonder if some sort of mycoplasma infection could do

this. I realize how hard it is to get diagnosed with this (PCR)test and doctors

never listen to me or take

me that serious. Once they say you have Fibromyalgia it seems they give up

doing any other investigating on what could be wrong. I just made another

appointment with another rheumatologist which is going to take 2 months just to

get an appointment. I even had them test me for Lyme and it came back

negative.How can someone be so sick and nothing shows up on tests?I've been too

sick to work and I lost everything and trying to get disability benefits i so

stressful and almost impossible to get (especially if your doctor doesn't

cooperate and give you the right diagnosis.Most of the doctors don't like when

you tell them you found information on-line-they label you as a hypochondriac.

Seems you can't win either way.Thanks everyone for listening to me..Sheila

June 17, 2009

rheumatic and

and and everyone: I was told it could be fibromyalgia/Chronic Fatigue

Syndrome etc. But after researching my symptoms after all these years it just

doesn't quite fit the picture of this illness. I asked if I was tested for a

spondylosis or reiter's etc. and I wondered if there is a test for it and would

it give me dry eyes and mouth and my salivary glands swelled up also. My muscles

ache so bad and it's hard to walk and now my fingers are starting to hurt , my

lower back near the tailbone aches and it feels like it actually moves and

cracks and my neck hurts and jaw .It seems like every part of my body is

affected and I wonder if a rheumatic condition could do this? I also developed

thyroid condition soon after I got sick(Graves Disease).Somehow I developed

shingles too... I also wonder if some sort of mycoplasma infection could do

this. I realize how hard it is to get diagnosed with this (PCR)test and doctors

never listen to me or take me that serious. Once they say you have Fibromyalgia

it seems they give up doing any other investigating on what could be wrong. I

just made another appointment with another rheumatologist which is going to take

2 months just to get an appointment.I even had them test me for Lyme and it came

back negative.How can someone be so sick and nothing shows up on tests?I've been

too sick to work and I lost everything and trying to get disability benefits i

so stressful and almost impossible to get (especially if your doctor doesn't

cooperate and give you the right diagnosis.Most of the doctors don't like when

you tell them you found information on-line-they label you as a

hypochondriac.Seems you can't win either way.Thanks everyone for listening to

me..Sheila

June 17, 2009

That's strange that you also haf Graves Disease.? I also had that in my early

twenties.? I wonder if there is a connection.? It took years to be diagnosed

with Systemic Sclerosis.? In the early disease, I had calcinosis on my toes and

the capillaries around my fingernails wereswirled and red.? It wasn't till years

later, when I could nolonger swallow that I was diagnosed.? I did have a dentist

tell me that the peridontal ligaments around my teeth were widened.? He was

lookink forn external signs and didn.t see any.? We thought the widening was

from wearing retainers.? Lynne A