Dana

[Guest guest]

One thing I do want to stress: Any reaction to any supplement may be

the result of confounding factors unique to an individual and their

particular metabolism. This may explain why a supplement may do

wonders to one, have no effect on others, or even produce negative

effects in some. Certainly within the non-NT population, even more

caution should be urged.

While awareness of potential negative reactions is important and

should be brought to the forefront of any supplement regimine, an

individual's own negative experience shouldn't deter others from

trying something that could very well be beneficial to them.

I am also painfully aware that the scientific community should

not " homogenize " the non-NT population into categories and subsets of

categories for determining possible routes of treatment. " One size

fits all " definitely does not apply.

> Thanks as usual for your insight. Sorry the enzymes made you

goofy.

> I think I'll avoid them, God knows I don't need any help in that

dept.

> I'm goofy enough as it is, w/out any help.

>

> What's up with the Fun Board? Bravenet is down more often than not.

>

> Later tater.

>

> Charmayne

[Guest guest]

I suppose I will reply to your message here, but this includes for the

other replies to me also.

My #3 son I give his enzymes in his drink. He will drink basically

anything I give him. I have given him milk, milk substitute, diluted

juice, whatever, and I put one each capsule in his drink that he

drinks all the way thru the meal and it works for him.

My #2 son will only drink ice water [and it HAS to have the ice LOL].

Sometimes he will accept enzymes in the water if I also put in a

little sugar, but most times not, so I can't take the risk of him not

wanting the water with enzymes. So that is why I use the honey on a

cracker. I am considering what else I can try, like maybe mayonnaise

with the enzymes on the cracker or something. He also has texture

issues in that he won't eat anything that would require a spoon. He

will eat with a fork or his fingers, but not a spoon, and he does not

like anything cold, it has to be at least room temperature, so no

pudding or applesauce or anything like that, because they are both

cold and require a spoon. I am working with him on this but right now

it is not my most important issue with him, one thing at a time LOL.

Anyway thanks for the well wishes!!

> I am SOOOO glad things are going better with the enzymes for you. My

> son Keeg was very limited in what he would eat (not could eat-he

just

> had a lot of texture issues) so I can definitely relate. I used to

> stand in front of the fridge going " uggh " pancakes and rice again.

Or

> sloppy joes and beans and weenies. I hope you continue to see

> improvements!! Keep us all posted and let me know how your " honey

> experiment " goes. YEAH DANA!!!

[Guest guest]

Dana,

I just saw where you posted that you had begun chelation with your kids. I

have seen you on the autism/mercury board but was not aware that you had

started.

If you don't mind, would you share your protocol? Are you doing ALA only?

What improvements have you been seeing??

Thanks.

[Guest guest]

> Dana,

> I just saw where you posted that you had begun chelation with your

kids. I

> have seen you on the autism/mercury board but was not aware that you

had

> started.

> If you don't mind, would you share your protocol? Are you doing ALA

only?

> What improvements have you been seeing??

> Thanks.

>

Okay will try to give you some info. Excuse my abbreviations, my time

is short now.

I started round 1 on Monday. Am doing MTW 3 on, then 4 days off. I

give ALA 25mg every 8 hours. Not necessarily the most recommended

protocol, but I do my best. I am doing my three younger children, all

three have same food issues. #2 is 5-1/2 autistic, #3 is 4 language

delay/PDD, #4 is 2-1/2 NT but same food issues. All three of these

children are developmentally approx 2 to 2-1/2 yo. I scale the dosage

for #3 and #4.

I will report primarily on #2 but will give you brief on the other

two kids.

For #4, I am chelating primarily to help with food issues. I

understand some children can eat foods again after chelating. She has

same food issues as other two, tolerates basically 4 items without

enzymes. No difference with chelation, but I did not expect any this

soon.

For #3, he has same food issues also. He has a major ulcerating rash

if he eats gluten, casein, and several other food items. He was gfcf

and lots of other foods removed for 18 months, but still had a low

level rash after that, even after I started enzymes a few months ago.

Started talking tho, one word at a time and echolalic, so that is

good. Since this first round, his residual rash is MARKEDLY declined,

and he is starting to try to put two words together that are not

echolalic. I don't know if the chelation is helping residual food

allergies, or if he is allergic to the metals which are being removed,

but this rash reduction is so nice to see, and of course the language

also.

For #2, he is basically an NT 2-1/2 yo child altho chron age 5-1/2.

After the first dose of ALA on Monday morning, about an hour later he

suddenly had this major urge to engage in his prior favorite stim,

which is dragging his head along any horizontal line he can find,

and/or twirling sticks in front of his eyes. It was so bad that we

went outside and he dragged his head along my car and apparently my

car is desperately in need of a wash and wax, because the side of his

head was covered in dirt and blue paint dust. I don't know if this

was metals coming out, which seems too soon for me, or if he is not

tolerant of the ALA itself.

After the first 3-4 hours, he did settle down on this, but it remains

because he had stopped doing it for the most part for several months,

but now he is reminded again, so he is doing it again, altho now he is

frustrated and has a tantrum when it does not give him the same

feeling as it did Monday.

Tuesday and Wednesday I noticed that he could go over an hour between

trips to the potty [i am currrently potty training]. All three of

these days he had mushy bm after each round, which yes I had to clean

out of his underwear! But his language did improve, he will put 3-5

words together, but he was doing it more than usual, even during the

round.

Yesterday was the first day off, which I was warned could be bad

because of re-binding effect. WOW an understatement! Whereas before

when he was not happy, he would stomp his foot and say " NO! " , now he

flops down on the floor, all 50 pounds of him, and kicks and yells.

Now this is a typical 2yo tantrum, but a 5yo doing it is NOT pleasant.

And I was at the grocery store too LOL. Everyone looked at me like I

must be a bad mother LOL. Here is a 5yo child having a major

firestorm tantrum in a grocery store! And he is 50 pounds so there is

not much I can do to " manhandle " him. So I pulled him up by his hand,

which caused him to collapse his legs so he would not stand up, which

was FUN FUN FUN. [if anyone has ideas on how to handle this, I would

appreciate them. I had to resort to pulling his hair a little, which

worked, but I don't want to have to do that again.] I eventually put

him in the shopping cart, which then I had to push one and pull the

other, because I cannot put items into a shopping cart if he is in it

also, because there is no room and now he will throw the items out. I

looked like a train, engine cart in front, I am tender, cart following

is caboose. Or so says my #1 son LOL

Today he is announcing when he has to pee about 50% of the time, which

is better than before when he would not announce, I had to take him

every 45 minutes. He is also using language more than usual, which is

good.

The big thing to me tho, is what happened this morning. My son is not

interested in any video that is not animated. The only two TV shows I

let my kids watch besides videos, is Teletubbies [which my husband

describes as turning his brain to jello when he hears it, but it is

not offensive to me, and I think Sesame Street is offensive, but then

#2 won't watch that anyway because it is not animated] and Mr. 's

Neighborhood. Anyway, he is marginally interested in Teletubbies,

because it is not technically " animated " but close. He is not

interested in the " real life " segment of Teletubbies, nor is he the

slightest bit interested in Mr. 's Neighborhood.

Anyway we watched Teletubbies. He was marginally interested as

before. When the real life segment came on, it was about animals from

Africa. He was VERY interested. He pointed out the ones he knew, and

asked " what's that " for the ones he did not know. He has NEVER been

interested in real life on TV before. I am glad I might be able to

use real life videos with him now, instead of Teletubbies!

Then on Mr. 's Neighborhood, there was a segment on hula hoops.

My neighbor gave us a hula hoop a few weeks ago, but my kids roll it

and crawl thru it. I tried to show them how to use it and even YOU

would have laughed hysterically LOL. But all three of these kids,

even #2, pointed at the hoops and said " hoop " , and they were

fascinated to watch how to really use them. My #2 son watched this

entire show, and he has never had the slightest interest in it before.

He is also much more interested in playing WITH his siblings, instead

of on his own. We are working on sharing tho, because he is age 5 but

wants to play with the 2yo toys, just like the 4yo and the 2yo, and

when they have a " disagreement " , he always wins because he is so much

larger and stronger than they are.

Anyway I have to go to the health food store now, wish me luck with

the tantrums LOL!

I hope this was marginally helpful.

Dana

[Guest guest]

Hi Dana

I have been lurking at the mercury board for a while

now and struggling with deciding whether or not to

chelate my oldest. Are you using just ALA? If you

could let me know what protocol you are going to

follow I'd really appreciate it. I've seen your

website and read many of your emails at various boards

and believe I can trust your judgment. You can reply

to me personally if you'd like to keep this thread off

of this group.

BTW, I have been using Devin's enzymes on Sam for

about 6 weeks now and the improvements are definitely

worth it! (Not to mention making it easier to feed

him!) His eye contact and imitation skills have

improved immensely and so have his play skills. He is

also way less rigid/anxious/confused and way nicer to

his little brother )

Cheers from Canada!

=====

)

Mom to Sam (almost 5, PDD/HFA - using enzymes, somewhat gfcf diet, magnesium

supplement, play therapy, improving steadily) and Isaac (NT 2 year old)

_______________________________________________________

[Guest guest]

Dana,

I'm going to second what Debbie said. The head remains moldable until the

sutures close around age 2. Hang in there - you'll be in to see the dr before

you know it!

Marci (Mom to )

Oklahoma

[Guest guest]

Dear Dana,

hello & welcome to the group. I have some idea of how you feel. Here's a little about me: My name is . I'm originally from Queens, NY. I attended college in Mansfield, PA and currently live in Virginia, about an hour west of Washington, DC. In September 1999 I was 22 and in my last semester of college. Several weeks into the semester I began to have joint pain. Within a few days, I lost the complete use of the left side of my body. 2 months and 13 doctors after the symptoms first appeared I was diagnosed with Reactive arthritis, a rare type of arthritis that is triggered by an infection.

I am not married, nor do I have any kids but I do understand what it is like to be young and have arthritis. After being diagnosed, I was put on 40 mg/day of Prednisone and several other meds. I moved back in with my parents after graduation because I couldn't take care of myself. 6 months later, I found a medication combo that works: Prednisone, Ibuprofen, Azulfidine EN, Folic Acid, Methotrexate, and Remicade. Luckily, this combo still works well for me. The Remicade especially has helped with my inflammation, pain and fatigue, which in turn has helped my depression.

I still go through small bouts of depression, but they are rarely solely because of my arthritis.

I'm sure others have told you that a negative RA test does not mean you don't have RA. About 20% of people with RA test negative for the RA factor.

As far as living a "normal" life, my definition of normal has changed since having arthritis. I (begrudgingly) accept that I will never be the same person I was before arthritis came into my life. I have learned the need for changes in my life: I go to bed at the same time each night & wake up the same time each morning (even on weekends); I limit my caffiene intake to 1 product per day if at all; I have made some changes in my diet and exericse when I can; and the hardest change: knowing when to say "no".

Take care,

in VA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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[Guest guest]

June,

You are the best. I now go to work with a grin on my face, and a glow in my

heart! Have an excellent day, June...And all of the rest of you lovely ladies!

[ ] Dana

My dear girl, you have my utmost respect for what you have achieved. God saw a

purpose in life for you and he will always be there to help you along the way.

Being in a group where you can talk about your fears, experiences, failures and

share with others is what our list is all about. I don't know of any list that

has kept so many members contributing and being helped for so many years as our

RA support team. For this, I am eternally grateful a and .

Hugs

June