new

[Guest guest]

Good story, Marge. Very encouraging. Thanks.

Ellen

rheumatic Re: new

Hi Sharon,

Minocin was my lifesaver. I have Sjogrens as well. Here is a story

I wrote.

I was diagnosed with Sjogrens Syndrome in 1982. It began with very

dry eyes that at first were light sensitive. They became so dry that

it was difficult to see without everything becoming blurry. I was

getting pain in my eyes.

At this point, I needed to use moisture chamber glasses to keep the

air from drying my eyes further and thus reducing some of the pain.

I was concerned that particles in the air would fly into my eyes and

stick to them as there was no moisture to shield them. This often was

happening. Normal daylight even bothered them, let alone sunlight.

I was becoming more and more homebound as smokers bothered me as the

ashes would stick to my eyes and my eyes just would sting instead of

water. I could no longer drive due to blurring.

Life became using artificial tears every hour, living in darkened

rooms and just not using my eyes. Watching TV for half an hour was a

luxury as well as reading. When reading, all I could read at one time

was a paragraph or two as the focus that I needed to read dried my

eyes even more causing more pain as well as the words would all blur

together.

I realized I had lost my sense of smell when my daughter who was then

12 made a tuna fish sandwich for me and I told her it must have

turned, as it smelled terrible. She insisted it wasn't but I never

knew this was a manifestation of the disease. Again not realizing

this, I opened the refrigerator one day and the same thing happened,

a foul smell occurred. I though a good portion of the food away,

washed out the refrigerator and, you guessed it, the smell was still

there! It was the lack of moisture in my nose that was causing this

Dry mouth made it impossible to eat meat, hard fruits or hard foods

in general. I did not even realize I was gravitating towards softer

foods and foods with sauces. It was just easier to swallow.

I once was eating sn apple when this began and a piece of apple did

stick in my throat and I was rushed to the ER. I knew I had to eat

softer foods from then on.

My voice grew hoarse and I suffered with laryngitis often. I was

trying at that time to make a patient education tape on Lupus When

they replayed what I had recorded a distinct click could be heard.

This came from the dryness and it did not seem to matter how much

water I consumed or gum or sugar free lozenges I used.

I learned about a clinical trial at our local University hospital for

the use of pilocarpine, now called salagen. I called the doctor and

he agreed to see me. When I met DR Sreebny he had said I was already

very severe and he wanted to be sure I received the medication so he

advised against the trial, as it was a double blind study. I became

his patient and he followed me as though I was in the trial. This was

in 1995.

I took the medication 4 x a day and I did begin to improve I no

longer needed the glasses nor the tears as frequently and I was more

comfortable.I had also had a punctal occulsion done by cautery as I

wanted it permanent.

AT a checkup in 1996, Dr Sreebny of Stony BrookU( now retired) was

doing saliva measurements, that he always did and asked me if

anything was different. It was! I had begun Minocin 3 months before

but neglected to tell him before he asked. It was prescribed for my

Lupus and rheumatoid arthritis that I have as well. On examination,

he told me that the glands seemed to be secreting more moisture now .

I never expected this!

I saw him 3 months later and again, an increase in saliva and

moisture. After 9 months on Minocin, my saliva levels were in the

normal range for the first time ever.

After 1 yr on Minocin I went for an annual eye exam. The eye doctor

asked if I was doing anything differently. I told him about the

minocin and that I had reduced the cortisone as well as the

methotrexate.He said he wanted to do a Schirmers test to check the

amount of eye moisture. I rebelled as the last time this was done 2

yrs before, the doctor and I scraped the paper off my eye as there

was NO moisture! This time was very different. I measured a normal

reading. He said that the Sjogrens is well under control.

On the minocin, I can now read novels, work on a computer, eat

anything I wish and have regained some of my lost sense of smell. I

no longer use tears or need special glasses. I am no longer limited.

I can drive, eat out not worry about things botherong my eyes. The

sunlight only bothers them when it bothers others.

Every time I returned to Dr Sreebny, he remarked about the change in

me and has said to me that from where I was when I came to him and

where I was now, it was a miracle. I feel that way, too. I had the

measurement increase to prove this and feel it was a way of my really

documenting the improvement.

I was grateful for his supervision, as I am able to know that I have

improved. I so appreciate every day for the way I feel. As an extra

bonus, my rheumatoid arthritis and lupus are also in control!

Hope this helps, Sharon...There is HOPE

Love Marge

> Hi,

> I am new to this group. I have been ill for about 1 year. I think

it

> is sjogren's syndrome. All my test keep coming up negative.

Symptoms

> are very real. I was wondering if anyone had a positive therapy

> approach.

> sharon

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

my daughter didn't have tort. From what i understand it is more difficult to reposition when the baby has tort. Also i would think that it would be good to address the tort sooner than later. I am sure other tort families will chime in. Have you checked out the tort group also. Congratulations on sucessfully repositioning your middle son.

Angie and Jenna(STAR band grad)

New

Hi. My name is . I have a 3 month old son named Maddux that has Plagiocephaly/Torticollis.His Dr's response to this was to reposition him and keep him off his flat side. And that it would go away.My fear is that it won't. Everything I have read on Tort. says he would need PT. My question is this....He has a well baby check on March 2. Should I take him in sooner and demand he does something about this now or wait until his appointment?I am at a loss. My middle son had Plagio but it rounded out on it's own with repostioning. He didn't have the Tort.Any help would be appreciated.OklahomaFor more plagio info

[Guest guest]

Hi and welcome to the group!

Gosh, you are lucky to be starting early with the repositioning and

the stretching for tort. I think you have the right to be concerned

that it won't go away without some intervention. My son was

diagnosed very early as well, was in weekly PT and OT for his tort

and still had to wear a STARband for 21 weeks. Some babies do not

need to wear one, but it is much harder to fight the plagio with a

tort baby.

Will your ped prescribe/refer you for pt for the tort? We needed it

desperately in the beginning and will continue to go until my son is

walking tilt free.

Is your ped a helmet/band friendly doc? If not, you may want to

consider changing docs, if possible. It is best if you have a ped

who is at least open to the idea.

As for your well baby check in March, I have conflicting emotions. I

would say go ahead and wait until the appt, but if you are not doing

anything for the tort, as in stretches or exercises, then your

repoing attempts will not be as successful as when your son has a

good range of motion. If you are doing stretches already, then I

would say go ahead and wait the 3 weeks. Is the doc who told you to

repo Maddux the same doc that you will be taking him to for the well

baby check?

Good luck and keep us posted on your decisions.

- mom to Aidan

STARgrad 02/04/04

GR Mi

--- In Plagiocephaly , " amanda " <girlgukdtieufh@y...>

wrote:

> Hi. My name is . I have a 3 month old son named Maddux that

> has Plagiocephaly/Torticollis.

> His Dr's response to this was to reposition him and keep him off

his

> flat side. And that it would go away.My fear is that it won't.

> Everything I have read on Tort. says he would need PT. My question

> is this....He has a well baby check on March 2. Should I take him

in

> sooner and demand he does something about this now or wait until

his

> appointment?

> I am at a loss. My middle son had Plagio but it rounded out on it's

> own with repostioning. He didn't have the Tort.

> Any help would be appreciated.

>

> Oklahoma

[Guest guest]

Hi ,

My son also has plagio and tort. He is 5 months old and has been

going to PT for about a month. The PT has helped tremendously with

his tort. He goes once a week and I stretch him a lot at home. You

should try and get a referral to PT. It took me a while to get in

after I got my referral. Also put interesting things to look at and

toys etc. on whatever side your baby has trouble looking to. Colin

has trouble looking to the right so I am always putting toys on the

right and nothing on his left. Good Luck.

Tris

--- In Plagiocephaly , " amanda " <girlgukdtieufh@y...>

wrote:

> Hi. My name is . I have a 3 month old son named Maddux that

> has Plagiocephaly/Torticollis.

> His Dr's response to this was to reposition him and keep him off

his

> flat side. And that it would go away.My fear is that it won't.

> Everything I have read on Tort. says he would need PT. My question

> is this....He has a well baby check on March 2. Should I take him

in

> sooner and demand he does something about this now or wait until

his

> appointment?

> I am at a loss. My middle son had Plagio but it rounded out on it's

> own with repostioning. He didn't have the Tort.

> Any help would be appreciated.

>

> Oklahoma

[Guest guest]

Hi ,

I'd bug your pediatrician to get you the PT. Although my son has plagio, my pediatrician said he didn't have tort, but I've been noticing a head tilt and some limitations to his left side. I've been doing some exercises I saw on the Tort site, but feel like I need some more guidance/supervision. So after a week of bugging, I got a referral to a PT. We go in next week. He'll be 16 weeks. I say bug your pediatrican.... We too have a March 2nd appt -- well baby checkup -- but I didn't want to wait that long! It does take awhile for a referral to go through and to find the right PT (one who focuses in on babies!).

Jeannietrijess3 <trijess3@...> wrote:

Hi ,My son also has plagio and tort. He is 5 months old and has been going to PT for about a month. The PT has helped tremendously with his tort. He goes once a week and I stretch him a lot at home. You should try and get a referral to PT. It took me a while to get in after I got my referral. Also put interesting things to look at and toys etc. on whatever side your baby has trouble looking to. Colin has trouble looking to the right so I am always putting toys on the right and nothing on his left. Good Luck.Tris> Hi. My name is . I have a 3 month old son named Maddux that > has

Plagiocephaly/Torticollis.> His Dr's response to this was to reposition him and keep him off his > flat side. And that it would go away.My fear is that it won't. > Everything I have read on Tort. says he would need PT. My question > is this....He has a well baby check on March 2. Should I take him in > sooner and demand he does something about this now or wait until his > appointment?> I am at a loss. My middle son had Plagio but it rounded out on it's > own with repostioning. He didn't have the Tort.> Any help would be appreciated.> > OklahomaFor more plagio info

[Guest guest]

Welcome to the group . I see you got some really good replies. My daughter was diagnosed with mild tort and moderate plagio at 3 months. We did at home stretches and did not go to PT. She has a DOC band. They check her neck range of motion very frequently. The at home stretches worked for us and with their monitoring we knew we were making progress. Is his tort hardly noticeable or really noticeable? I would probably call the ped and ask for a PT referral even if it's just for a few weeks. This would help you learn the stretches and get him used to them.

mom to na

DOC #1 10-27 to 11-26

DOC #2 12-10 (going to be a grad soon)

South Carolina

New

Hi. My name is . I have a 3 month old son named Maddux that has Plagiocephaly/Torticollis.His Dr's response to this was to reposition him and keep him off his flat side. And that it would go away.My fear is that it won't. Everything I have read on Tort. says he would need PT. My question is this....He has a well baby check on March 2. Should I take him in sooner and demand he does something about this now or wait until his appointment?I am at a loss. My middle son had Plagio but it rounded out on it's own with repostioning. He didn't have the Tort.Any help would be appreciated.OklahomaFor more plagio info

[Guest guest]

- My ds is now 8 months. I first asked about tort when he was 6

weeks and the ped said he did not have it. When we went to the ped

neurosurgeon at 4 1/2 months for the consult for plagio he was diagnosed

with tort. I will always wonder if we had started PT at 6 weeks if he

would've needed the helmet or not. My advice is to get a prescription for

PT.

Now, I live in Oklahoma. You've already been given the name of the

orthotist that I see, Bill Barringer. Where in OK do you live? I'm in

Norman and would be happy to give you the name of a great PT! Also, you

should check into SoonerStart. If your ds qualifies (50% delayed in one

area or 25% delayed in two areas) he will get free (PT, OT, etc) therapy.

Here is a link for you:

http://www.okdhs.org/ddsd/SoonerStart/Sooner_Start.htm

Good luck and feel free to email and/or ask more questions!!

Cory, mom to (6/5/03)

STARband 11/26/03, in OK

[Guest guest]

Hi ,

I see that you've already received some great replies to your post so

I won't repeat them. I just wanted to welcome you to the group.

Keep us posted.

--- In Plagiocephaly , " amanda " <girlgukdtieufh@y...>

wrote:

> Hi. My name is . I have a 3 month old son named Maddux that

> has Plagiocephaly/Torticollis.

> His Dr's response to this was to reposition him and keep him off

his

> flat side. And that it would go away.My fear is that it won't.

> Everything I have read on Tort. says he would need PT. My question

> is this....He has a well baby check on March 2. Should I take him

in

> sooner and demand he does something about this now or wait until

his

> appointment?

> I am at a loss. My middle son had Plagio but it rounded out on it's

> own with repostioning. He didn't have the Tort.

> Any help would be appreciated.

>

> Oklahoma

[Guest guest]

Hi. Thanks for the wekcome. I have no idea if the ped will refer him

our not. I am hoping he will. If not we will be changing doctors. I

am going to make him an earlier appointment because I am worried

that if the treatments don't start now then we may have a harder

time in the future. Thanks.

Oklahoma

> > Hi. My name is . I have a 3 month old son named Maddux

that

> > has Plagiocephaly/Torticollis.

> > His Dr's response to this was to reposition him and keep him off

> his

> > flat side. And that it would go away.My fear is that it won't.

> > Everything I have read on Tort. says he would need PT. My

question

> > is this....He has a well baby check on March 2. Should I take

him

> in

> > sooner and demand he does something about this now or wait until

> his

> > appointment?

> > I am at a loss. My middle son had Plagio but it rounded out on

it's

> > own with repostioning. He didn't have the Tort.

> > Any help would be appreciated.

> >

> > Oklahoma

[Guest guest]

Thank you so much for that link. I am definitely going to check into

that. I live in Ardmore. About an hour from Norman. (My favorite

place in the whole state). I would really like whatever info you

have on the specialists. Thanks.

Oklahoma

--- In Plagiocephaly , " Cory Schwemley " <cory6@c...>

wrote:

> - My ds is now 8 months. I first asked about tort when he

was 6

> weeks and the ped said he did not have it. When we went to the ped

> neurosurgeon at 4 1/2 months for the consult for plagio he was

diagnosed

> with tort. I will always wonder if we had started PT at 6 weeks

if he

> would've needed the helmet or not. My advice is to get a

prescription for

> PT.

>

> Now, I live in Oklahoma. You've already been given the name of the

> orthotist that I see, Bill Barringer. Where in OK do you live?

I'm in

> Norman and would be happy to give you the name of a great PT!

Also, you

> should check into SoonerStart. If your ds qualifies (50% delayed

in one

> area or 25% delayed in two areas) he will get free (PT, OT, etc)

therapy.

> Here is a link for you:

> http://www.okdhs.org/ddsd/SoonerStart/Sooner_Start.htm

>

> Good luck and feel free to email and/or ask more questions!!

> Cory, mom to (6/5/03)

> STARband 11/26/03, in OK

[Guest guest]

- We used Amy Laubach for physical therapy. She is at Therapy In

Motion here in Norman, phone number is 405/447-1991. She is really great

with babies and kids and came highly recommended to us. We only needed to

go 4 times, but then 's tort wasn't that bad. If there are any physical

therapy places in Ardmore, call and see if they have someone that works

w/tort babies.

The ped neurosurgeon we saw is Dr. ny Honeycutt and his info is in the

database section of this website.

Let me know if you need any more info.

Cory, mom to (6/5/03)

STARband 11/26/03, in Norman, OK

[Guest guest]

Hi and welcome to the group. You've gotten some great

replies, so I won't repeat them.

Dustie, mom to , DOCGrad'03

Texas

--- In Plagiocephaly , " amanda " <girlgukdtieufh@y...>

wrote:

> Hi. My name is . I have a 3 month old son named Maddux that

> has Plagiocephaly/Torticollis.

> His Dr's response to this was to reposition him and keep him off

his

> flat side. And that it would go away.My fear is that it won't.

> Everything I have read on Tort. says he would need PT. My question

> is this....He has a well baby check on March 2. Should I take him

in

> sooner and demand he does something about this now or wait until

his

> appointment?

> I am at a loss. My middle son had Plagio but it rounded out on

it's

> own with repostioning. He didn't have the Tort.

> Any help would be appreciated.

>

> Oklahoma

[Guest guest]

Tina,

Welcome to the list. It may be that you son needs high levels of sensory

input, and that is the cause for the biting and hiting. I would bump up

the OT if you can. Where do you live?

Do you have a doctor- and are they helping you with chelation? I am

wondering about the concerta, risperdol, and clonidine....

[ ] new

My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

very happy little boy most of the time. He is verbal but his

communication is limited to wants and needs. He doesn't

spontaneously share. He gets easily frustrated and goes through

cycles of biting and hitting. I started him on the GFCF diet in

July and saw some improvement. After several months of agonising and

weighing risks and benefits I decided to chelate him using DMSA (Dr.

Cutler's protocol) initially and eventually will be adding ALA. I am

using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

probiotics, homeopathic treatments for measles, rubella, and pertusis

and concerta, risperdol, and clonidine. I am overwhelmed by the

information on this site and in awe of all of the parents and their

knowledge. I feel very ignorant in comparison. I realize this type

of treatment is individualized to each child, but I am looking for

direction. I am looking for any suggestions anyone might have for

additional treatments focusing on behavior and language (keeping in

mind I am a single parent on a very limited budget). Thanks so much

for your help and taking the time to help others and putting yourself

out there in a treatment that is so controversial. Thanks Tina

=======================================================

[Guest guest]

Asmus <jenniferasmus@...> wrote:Tina,

Welcome to the list. It may be that you son needs high levels of sensory

input, and that is the cause for the biting and hiting. I would bump up

the OT if you can. Where do you live?

Do you have a doctor- and are they helping you with chelation? I am

wondering about the concerta, risperdol, and clonidine....

[ ] new

My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

very happy little boy most of the time. He is verbal but his

communication is limited to wants and needs. He doesn't

spontaneously share. He gets easily frustrated and goes through

cycles of biting and hitting. I started him on the GFCF diet in

July and saw some improvement. After several months of agonising and

weighing risks and benefits I decided to chelate him using DMSA (Dr.

Cutler's protocol) initially and eventually will be adding ALA. I am

using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

probiotics, homeopathic treatments for measles, rubella, and pertusis

and concerta, risperdol, and clonidine. I am overwhelmed by the

information on this site and in awe of all of the parents and their

knowledge. I feel very ignorant in comparison. I realize this type

of treatment is individualized to each child, but I am looking for

direction. I am looking for any suggestions anyone might have for

additional treatments focusing on behavior and language (keeping in

mind I am a single parent on a very limited budget). Thanks so much

for your help and taking the time to help others and putting yourself

out there in a treatment that is so controversial. Thanks Tina

=======================================================

[Guest guest]

Tina,

Welcome. Are you giving and essential fatty acids (EFA's)? Not only are they

on the list of the recommended supplements for one undergoing chelation, they

really helped my child (and many others) with language skills. We started

Nordic Naturals Pro-EFA on 4/10/03. When we started my son had about an 80 word

vocabulary with a handful of 2 word phrases. I stopped counting his words in

October, 2003, when they exceeded 1000+ and he was speaking consistently in 4-6

word phrases. His progress in Speech continues to amaze me and others. EFA's

help with behavior in some children as well.

Have you looked at natural alternatives to prescription medications? We use

be'Calm'd (www.adhd-becalmd.com). You can read about others at

www.naturalcalm.net and www.vaxa.com (ATTEND);

http://www.alternativementalhealth.com/articles/walsh.htm

http://www.alternativementalhealth.com/articles/article-pffeiffer.htm

I've read that Dr. McCandless recommends GABA for anxiety. I believe she posted

that it was non-toxic and as a guide to start at 500 mg. in the p.m. to help

sleep and increase upwards (to 2000 mg.) for chronic anxiety. You'd need to

research these doses for yourself if you elect to try GABA to make sure of the

correct dose for your child as I could have noted this in error. I've also read

that Inositol from your local HFS works like Paxil for anxiety and OCD.

Magnesium and Epsom Salt baths are often referenced by parents for their

soothing, calming effects. Glycine, Taurine and Selenium are said to decrease

aggression and increase calmness.

Have you done a DDI Hair Test? Did you read the ANDY INDEX and the

FAQ's in the files section? Good luck to you and your little

fellow. KIM

[ ] new

My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

very happy little boy most of the time. He is verbal but his

communication is limited to wants and needs. He doesn't

spontaneously share. He gets easily frustrated and goes through

cycles of biting and hitting. I started him on the GFCF diet in

July and saw some improvement. After several months of agonising and

weighing risks and benefits I decided to chelate him using DMSA (Dr.

Cutler's protocol) initially and eventually will be adding ALA. I am

using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

probiotics, homeopathic treatments for measles, rubella, and pertusis

and concerta, risperdol, and clonidine. I am overwhelmed by the

information on this site and in awe of all of the parents and their

knowledge. I feel very ignorant in comparison. I realize this type

of treatment is individualized to each child, but I am looking for

direction. I am looking for any suggestions anyone might have for

additional treatments focusing on behavior and language (keeping in

mind I am a single parent on a very limited budget). Thanks so much

for your help and taking the time to help others and putting yourself

out there in a treatment that is so controversial. Thanks Tina

=======================================================

[Guest guest]

Thank you for your information. How much Nordic Naturals Pro-EFA do you

use? I am going to get some for my non-verbal son. Thanks, Kristy

On Saturday, March 6, 2004, at 08:47 PM, frank sabel wrote:

> Tina,

> Welcome. Are you giving and essential fatty acids (EFA's)? Not only

> are they on the list of the recommended supplements for one undergoing

> chelation, they really helped my child (and many others) with language

> skills. We started Nordic Naturals Pro-EFA on 4/10/03. When we

> started my son had about an 80 word vocabulary with a handful of 2 word

> phrases. I stopped counting his words in October, 2003, when they

> exceeded 1000+ and he was speaking consistently in 4-6 word phrases.

> His progress in Speech continues to amaze me and others. EFA's help

> with behavior in some children as well.

>

> Have you looked at natural alternatives to prescription medications?

> We use be'Calm'd (www.adhd-becalmd.com). You can read about others at

> www.naturalcalm.net and www.vaxa.com (ATTEND);

> http://www.alternativementalhealth.com/articles/walsh.htm

> http://www.alternativementalhealth.com/articles/article-pffeiffer.htm

>

> I've read that Dr. McCandless recommends GABA for anxiety. I believe

> she posted that it was non-toxic and as a guide to start at 500 mg. in

> the p.m. to help sleep and increase upwards (to 2000 mg.) for chronic

> anxiety. You'd need to research these doses for yourself if you elect

> to try GABA to make sure of the correct dose for your child as I could

> have noted this in error. I've also read that Inositol from your local

> HFS works like Paxil for anxiety and OCD. Magnesium and Epsom Salt

> baths are often referenced by parents for their soothing, calming

> effects. Glycine, Taurine and Selenium are said to decrease aggression

> and increase calmness.

>

> Have you done a DDI Hair Test? Did you read the ANDY INDEX and the

> FAQ's in the files section? Good luck to you and your

> little fellow. KIM

> [ ] new

>

>

> My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

> very happy little boy most of the time. He is verbal but his

> communication is limited to wants and needs. He doesn't

> spontaneously share. He gets easily frustrated and goes through

> cycles of biting and hitting. I started him on the GFCF diet in

> July and saw some improvement. After several months of agonising and

> weighing risks and benefits I decided to chelate him using DMSA (Dr.

> Cutler's protocol) initially and eventually will be adding ALA. I am

> using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

> probiotics, homeopathic treatments for measles, rubella, and pertusis

> and concerta, risperdol, and clonidine. I am overwhelmed by the

> information on this site and in awe of all of the parents and their

> knowledge. I feel very ignorant in comparison. I realize this type

> of treatment is individualized to each child, but I am looking for

> direction. I am looking for any suggestions anyone might have for

> additional treatments focusing on behavior and language (keeping in

> mind I am a single parent on a very limited budget). Thanks so much

> for your help and taking the time to help others and putting yourself

> out there in a treatment that is so controversial. Thanks Tina

>

>

>

> =======================================================

>

[Guest guest]

Kristy,

I started with one soft gel per day. I just poked a hole in one end with a

needle and squirted it in his juice. Some children will actually take it in

water, straight off a spoon or better yet, chew the soft gel until all of the

oil is swallowed and then spit out the empty capsule. When we started, he was

33 months old and weighed in the 35 pound range I'm guessing (can't remember

exactly). Three months or so later I upped it to two per day. Today I give him

two Pro-EFA and one Pro-EPA per day. This step by step " formula " is found to be

tried and true by the majority of parents on the childrensapraxinet group

which is where I started on my journey for information to help my child. Nordic

Naturals has a website. I think it is www.nordicnaturals.com and their oils are

good quality - no mercury; however, there have been some posts of late re: soy

content so if your child has issues with soy you may want to look into that. I

think the EFA's are amazing! I can truly say they jump started my son's speech

b/c when we started them the only other thing I was giving him was two Rhino

Vites Chewable multi-vitamins per day. He was receiving Speech Therapy two

hours per week and Occupational Therapy one hour per week. He started both

therapies when he was 27 months old (November, 2002) with a 12-15 word

vocabulary. Good luck!!! KIM

[ ] new

>

>

> My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

> very happy little boy most of the time. He is verbal but his

> communication is limited to wants and needs. He doesn't

> spontaneously share. He gets easily frustrated and goes through

> cycles of biting and hitting. I started him on the GFCF diet in

> July and saw some improvement. After several months of agonising and

> weighing risks and benefits I decided to chelate him using DMSA (Dr.

> Cutler's protocol) initially and eventually will be adding ALA. I am

> using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

> probiotics, homeopathic treatments for measles, rubella, and pertusis

> and concerta, risperdol, and clonidine. I am overwhelmed by the

> information on this site and in awe of all of the parents and their

> knowledge. I feel very ignorant in comparison. I realize this type

> of treatment is individualized to each child, but I am looking for

> direction. I am looking for any suggestions anyone might have for

> additional treatments focusing on behavior and language (keeping in

> mind I am a single parent on a very limited budget). Thanks so much

> for your help and taking the time to help others and putting yourself

> out there in a treatment that is so controversial. Thanks Tina

>

>

>

> =======================================================

>

[Guest guest]

Kim, I would love to join this group. Could you give me the site?

Thanks so much, Kristy

On Saturday, March 6, 2004, at 11:20 PM, frank sabel wrote:

> Kristy,

>

> I started with one soft gel per day. I just poked a hole in one end

> with a needle and squirted it in his juice. Some children will

> actually take it in water, straight off a spoon or better yet, chew the

> soft gel until all of the oil is swallowed and then spit out the empty

> capsule. When we started, he was 33 months old and weighed in the 35

> pound range I'm guessing (can't remember exactly). Three months or so

> later I upped it to two per day. Today I give him two Pro-EFA and one

> Pro-EPA per day. This step by step " formula " is found to be tried and

> true by the majority of parents on the childrensapraxinet group

> which is where I started on my journey for information to help my

> child. Nordic Naturals has a website. I think it is

> www.nordicnaturals.com and their oils are good quality - no mercury;

> however, there have been some posts of late re: soy content so if your

> child has issues with soy you may want to look into that. I think the

> EFA's are amazing! I can tr!

> uly say they jump started my son's speech b/c when we started them the

> only other thing I was giving him was two Rhino Vites Chewable

> multi-vitamins per day. He was receiving Speech Therapy two hours per

> week and Occupational Therapy one hour per week. He started both

> therapies when he was 27 months old (November, 2002) with a 12-15 word

> vocabulary. Good luck!!! KIM

> [ ] new

>>

>>

>> My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

>> very happy little boy most of the time. He is verbal but his

>> communication is limited to wants and needs. He doesn't

>> spontaneously share. He gets easily frustrated and goes through

>> cycles of biting and hitting. I started him on the GFCF diet in

>> July and saw some improvement. After several months of agonising and

>> weighing risks and benefits I decided to chelate him using DMSA (Dr.

>> Cutler's protocol) initially and eventually will be adding ALA. I am

>> using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

>> probiotics, homeopathic treatments for measles, rubella, and pertusis

>> and concerta, risperdol, and clonidine. I am overwhelmed by the

>> information on this site and in awe of all of the parents and their

>> knowledge. I feel very ignorant in comparison. I realize this type

>> of treatment is individualized to each child, but I am looking for

>> direction. I am looking for any suggestions anyone might have for

>> additional treatments focusing on behavior and language (keeping in

>> mind I am a single parent on a very limited budget). Thanks so much

>> for your help and taking the time to help others and putting yourself

>> out there in a treatment that is so controversial. Thanks Tina

>>

>>

>>

>> =======================================================

>>

[Guest guest]

> using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

> probiotics, homeopathic treatments for measles, rubella, and

pertusis

> and concerta, risperdol, and clonidine.

If the concerta is for ADHD issues and the clonidine is for sleep

issues, then I would drop the Super Nu Thera and be sure you are

using HNI No-Fenol enzyme.

> additional treatments focusing on behavior and language (keeping in

> mind I am a single parent on a very limited budget).

You can read my son's story if you want. All of my interventions

have been OTC without doctor supervision, so they are, in general,

low cost.

http://www.danasview.net/myson.htm

Dana

[Guest guest]

I believe it is .

[ ] new

>>

>>

>> My son is 4 1/2 diagnosed with PDD initally and then ASD. He is a

>> very happy little boy most of the time. He is verbal but his

>> communication is limited to wants and needs. He doesn't

>> spontaneously share. He gets easily frustrated and goes through

>> cycles of biting and hitting. I started him on the GFCF diet in

>> July and saw some improvement. After several months of agonising and

>> weighing risks and benefits I decided to chelate him using DMSA (Dr.

>> Cutler's protocol) initially and eventually will be adding ALA. I am

>> using Super Nu Thera, milk thistle, Houstons' enzymes, nystatin,

>> probiotics, homeopathic treatments for measles, rubella, and pertusis

>> and concerta, risperdol, and clonidine. I am overwhelmed by the

>> information on this site and in awe of all of the parents and their

>> knowledge. I feel very ignorant in comparison. I realize this type

>> of treatment is individualized to each child, but I am looking for

>> direction. I am looking for any suggestions anyone might have for

>> additional treatments focusing on behavior and language (keeping in

>> mind I am a single parent on a very limited budget). Thanks so much

>> for your help and taking the time to help others and putting yourself

>> out there in a treatment that is so controversial. Thanks Tina

>>

>>

>>

>> =======================================================

>>

[Guest guest]

Hello All,

I am new to the group, although I have been reading the post for a while now.

Trying to understand and learn. My son is 5 years old diagnosed with autism.

He is nonverbal or should I say says a few words his way. He has forty hrs of

ABA a week goes to preschool four days a week and takes super nu thera and

dmg. And 10000000000+ kisses and hugs a day.

Chelating sounds very interesting and hard. It is all I can just do to get

the supplements he is taking now down him. I belong to an autistic support

group but there is not one person chelating. How do you get all this down

your

children when they only eat 5 foods and most of it you cannot add things to it.

Rio's mommy Cherie

[Guest guest]

My son takes his dmg and super nu thera in his mac and cheese. We break open

the capsules and mix it up. The only liquid he drinks is water so we cannot

mix any thing in it without him noticing. He eats five foods pizza, mac and

cheese, hot dog, cup cake (no frosting) coa coa puffs. So it is very hard to

disquis supplements.

As far as the money part I would sell my lung to help my son. I am willing

not to sleep at night. And I have already quit my job to stay home for his Aba.

I have a great husband and family support. Cherie

[Guest guest]

Chelating can be hard if the child doesn't take capsules well--hard,

but not impossible. If you believe or know your child would benefit

from chelating the hardest thing to overcome, sometimes can be our

own weakness to doing the things necessary for our child(ren) to be

better.

One we have to overcome the " average " approach of doctors and

parents alike that says, " O, poor us (poor you), we (you) have a

child with autism and there's nothing more than " x " that you can

do. " The lament goes on to say, " There's nothing more than " x " that

you can do that has been " proven " to help or do any good. "

To overcome that by beloved doctors and well-meaning professionals

(including social workers and school officials and teachers and

especially doctors) can be the most difficult thing to step over on

your way out of the spectrum, or as far out of it as you possibly

CAN get by doing everything in YOUR POWER to do.

Chelating is within you power to do. Alpha lipoic acid, dmsa, edta,

and other means of attempting to chelate or detoxify your child are

within price range of the nearest drug store or online ordering.

How much you are willing to sacrifice to fight for your child's

chances at a more normal existence is the key.

Willing except spending a few more dollars on lipoic acid and dmsa

or other things that could help detoxify your child's brain and body?

Willing to spend some time researching how to detoxify your child's

brain and body?

Willing to spend a few hours less sleep to trial out detoxifying or

chelating?

Willing to look your child in the eye an stop feeling sorry for him

long enough to teach him to take this medicine, because like those

100000000 kisses, tryng this means I love you enough to try this for

your liberty and health?

Energy, sacfifice and sometimes willingness to be the " only " one in

a group to try this or that is the price to pay for your child to

maybe move forward where other children may or may not.

My child's preschool wouldn't help with chelation, and couldn't help

with the diarreah issues. I took him out to deal with those. When

working part time wasn't getting it, I quit, to give my child a year

of chance at chelation and detoxification. Whatever it takes, was

my motto.

I haven't gotten " more " nights sleep, but I do take naps in the day

with my kids! LOL. My son doesn't love to take capsules, but he

learned to accept taking them. It's like waking a child up to go to

school, if you don't make some children get up, they won't ever go

to school. Children cry over that, but when parents work and

everyone HAS to get up, we make our kids do it.

Pratically speaking, how does your child take his dmg and supernu

thera? If you give either in a capsule, why not take a slightly

bigger capsule and put the dmg powder/liquid and ala and dmsa in one

capsule and give it? Other than that I hear kirkmanlabs.com has an

ala/dmsa combo capsule. You could look into that for simplicity.

Mixing doses in a little juice each time sometimes works.

My next question is " Have you TRIED? " You won't know what you can

manage until you try, and try and try again, and just see where you

come out. You might be surprised, and then again you might not, but

at least you will have tried chelating, tried getting doses in your

child. If you only detox/chelate one day a week, at least it's one

day...If you continue to train your child to the chelating routine,

you might find yourself getting to two days, and three days. Maybe

try dmps prescription which allows for more hours of sleep....

Try something, and at least you can say you tried. Chelation

(chelating) is " interesting, " but I like it because it

works...Chelation is an action word (verb), not a sitting around and

talking word/thing, and many children are better because of it. Not

all, but very many.

Lyn

> Hello All,

>

>

> I am new to the group, although I have been reading the post for a

while now.

> Trying to understand and learn. My son is 5 years old diagnosed

with autism.

> He is nonverbal or should I say says a few words his way. He has

forty hrs of

> ABA a week goes to preschool four days a week and takes super nu

thera and

> dmg. And 10000000000+ kisses and hugs a day.

>

> Chelating sounds very interesting and hard. It is all I can just

do to get

> the supplements he is taking now down him. I belong to an

autistic support

> group but there is not one person chelating. How do you get all

this down your

> children when they only eat 5 foods and most of it you cannot add

things to it.

> Rio's mommy

Cherie

>

>

>

[Guest guest]

Hi Cherie,

My boys are very limited eaters and drinkers as well.

I bought a bunch of oral syringes in the baby section of the store.

I syringe all of their supplements in.

My 3 yr. old does great.

My 4 yr. old does well generally.

I shoot it in towards the back of the mouth by the cheek. This way

I can usually bypass the tongue and they don't taste it as much.

HTH,

-Mercury , riyoelam@a... wrote:

> Hello All,

>

>

> I am new to the group, although I have been reading the post for a

while now.

> Trying to understand and learn. My son is 5 years old diagnosed

with autism.

> He is nonverbal or should I say says a few words his way. He has

forty hrs of

> ABA a week goes to preschool four days a week and takes super nu

thera and

> dmg. And 10000000000+ kisses and hugs a day.

>

> Chelating sounds very interesting and hard. It is all I can just

do to get

> the supplements he is taking now down him. I belong to an

autistic support

> group but there is not one person chelating. How do you get all

this down your

> children when they only eat 5 foods and most of it you cannot add

things to it.

> Rio's mommy

Cherie

>

>

>

[Guest guest]

Hi Cherie,

We started with probitoics (Primal Defense) and Houston enzymes. We had

exceptional gains with just these things -addressing yeast and food

intolerances. These arent too hard, as you can generally slip them into

juice.

Basically, as the intestinal system gets better- they seem to try some

new things. This group is also very helpful.

/

Best,

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

From: riyoelam@... [mailto:riyoelam@...]

Chelating sounds very interesting and hard. It is all I can just do to

get

the supplements he is taking now down him. I belong to an autistic

support

group but there is not one person chelating. How do you get all this

down your

children when they only eat 5 foods and most of it you cannot add things

to it.

Rio's mommy Cherie