Cindy

[Guest guest]

To

I have just ordered my first batch of both of these. How many times a day

does he have them then? I thought 3 with each meal but it sounds more if

with each snack too thank you. Clare

[Guest guest]

Clare,

My son takes one of each enzyme with each meal and each snack. Some

parents are having to give a higher dose, but I would definitely

start with a lesser dose, maybe even just start with a half capsule

of one enzyme for a few days, then add a half capsule of the other,

then move up the dose to one each. Devin sends a dosing sheet which

is what I would follow. Also, I wouldn't add in gluten and casein

until you are sure your child doesn't react to the enzymes, then when

you add back the problem foods, you'll be a better judge of any

reactions.

> To

> I have just ordered my first batch of both of these. How many times

a day

> does he have them then? I thought 3 with each meal but it sounds

more if

> with each snack too thank you. Clare

[Guest guest]

Amy,

My hubby was the same way! I was dying to know and he wanted a surprise. Turned out they couldn't get a good shot anyway, until a week before delivery, so I had to know! I bought him a card and said, if you want to know, its up to you, but you'll have to open the card to find out. He caved. Here's some of the names we thought about:

Elise

Ava

Christian (*that's my boy:)

Jasmine

Dylan Oh, the joy of going through the name game! Have fun!

' Mom

[Guest guest]

Thanks .

The boy/girl question will probably be a secret to the end as Daddy believes

in it being a suprise - so more names to pick.

Amy

> -----Original Message-----

> From: rella1234@... [sMTP:rella1234@...]

> Sent: Thursday, September 20, 2001 10:38 AM

> Plagiocephaly

> Subject: Re: another graduate

>

> Amy,

> Congratulations on Elijah's graduation! What's next, boy or girl?

>

> ' Mom

>

>

[Guest guest]

Hi,

Wierd. I did post the url in my email yesterday. I'll try again.

<

> <

>

> http://autismawakeninginia.bizland.com/autismakeningdietinvervention/id10.html

> >

Markey

> I'm not sure what you mean since I don't view the messages in digest

> form. Can you post the actual URL for us?

>

[Guest guest]

I appreciate this and the other messages because I really, really do

not want to give false hope and I try hard not to exaggerate my son's

progress. By giving the teachers' responses, I feel I can report

more accurately.

I am glad this may help someone out there, but it's just the worst

when someone emails that the enzymes did not help at all.

> I want to thank you for posting your sons remarkable progress

> because if it weren't for stories like yours and others I would

never

> have put my son on the enzymes that have changed our lives. It is

> unfortunate that not all children will benefit from them but think

of

> the many who have because of your story and be glad. Your story is

a

> HUGE inspiration to many others who may have given up hope if it

> hadn't been for you and that is soooooo important . People need to

> have hope because without hope we tend to give up and we CANNOT do

> that for the sake of our children. PATTI

[Guest guest]

Niki,

Thanks so much for your kind words- it really started out my morning with a smile! Thanks again!

' Mom

[Guest guest]

Hi Mic,

My son also had left tort which created the right flatness. We did put him in the DOC band and saw a huge improvement, especially with the facial asymmetry and ear misalignment. It was most important though to stretch that muscle out, to reduce anymore plagio that might occur as a result of having the tort unresolved. It took us from about 2 months at dx to approximately 9 months of age of physical therapy to see almost total resolve from the tort. He still has a slight tilt at times, but the muscle is not tight and he now has full range of motion.

Be aware that the tort can also cause facial asymmetry, as the muscle is pulling down the facial features to meet it (i.e., the cheek, eye, jaw bone- the muscle can be so tight that the facial features are essentially being pulled down to it). We would massage his entire face, and I think this helped a great deal, light strokes around the muscle, the jaw bone, the eye, all in an upward motion. The transformation took time, and I think if you try some massage and intense stretching to help resolve the tort, over time, the muscle will relax and allow some symmetry to happen.

We made sure to really make him turn his head to the left for everything that was exciting to him (Elmo, dogs, etc.). He started sleeping on his stomach and favors turning his head to the right, so when he's really sleepy, I turn his head towards the left since he is not doing it himself. I was told to keep an eye on the tort until age 2, and to try to make sure to stretch the muscle until that time as some kids regress. Mostly we have him stretch it himself by looking at things, but we try to incorporate stretches when he is conked out and we can do it peacefully, it doesn't hurt him and he gets the pt he needs.

Hope this makes some sense, if your already doing this, sorry for the repetition, just want to be helpful to any that are walking in the shoes I once did (and still am on some days!)

Good luck to you all! Have a safe and happy new year!

' Mom

[Guest guest]

Beck-

How silly, silly I feel for that statement- but yes- I was on a passionate rampage that day- must have been a bad hair day (oops- forgot to brush;)

Have a good one! Kiss Little B for me!

' Mom

[Guest guest]

Christi- I was just going to jump in here and let you know that my Grace absolutely HATED hats or you messing with her head in any way shape or form. I was just worried as could be how she would tolerate her helmet and she has now had it on 1 month and 2 weeks and has never minded it for one day. I was so relieved because I couldn't imagine putting anything on her head and leaving it with the way she hated hats etc. But she acts like it isn't even on. Never had a problem sleeping in it or playing in it or anything so far. The only time she has gotten fussy is when the helmet was getting tight and she needed to have it adjusted and it was hard for us to put on and off so that irritated her but now that the first adjustment has taken place and there is room for her head to grow again she is lovin' life again!! Good luck and Gracie

[Guest guest]

Hi. Thanks so much for the reply. Im sorry it took so

long for me to reply. I thought I had and then I

havent been on for a few days Ive just been so busy

with my 3 kids 2 dogs and a husband. Ughh Im tired.

haha ANyway I am very anxious about Myas appt on

tuesday I just dont know what to expect at the first

appt. But we did find out that tricare is going to

pay so I am so thankful for that. How long did

have to wear the band? Ive been trying to

put hats on Myas head alot to try to get her used to

atleast having somehting on her head. She hates when

I try to put a bow in her hair so it worried me about

the band. Because she is so different from my other

daughter Chloe who always has sat still for bows

barrettes anything in her hair and never fooled with

them and they just seem to bug Mya but the hats dont

seem to bother her one bit so I guess its just the

hair that she doesnt like me messing with. ANyway Im

just so anxious as I said about the appt on tuesday.

Thanks again for your reply!! It helps to have someone

to talk to whos been there.

christi

--- rella1234@... wrote:

> Christi,

> That is soooo terrific that Mya is almost at full

> range of motion!! Keep up

> the great work (and I know that it is work!!- don't

> worry, one day soon

> you'll be free of doing stretches and thinking

> stretches and worrying about

> stretches and Mya will be totally resolved!!)

> Actually was 8 weeks old when I found out

> about tort- I noticed that

> his head would always fall one way, but like you,

> thought this was just a

> favored way, and i thought he was just too young to

> have enough neck support

> (although he lifted his head the day he was born

> believe it or not!). Thank

> God my ped asked me at his 2 month check up if he

> always preferred one side-

> she couldn't get him to turn the other way to check

> his ear- and I was like

> YES! I couldn't even get into the crease to clean

> his neck it was so ear to

> shoulder (but looking back, it didn't seem so

> obvious- because it would

> slowly spring back to the shoulder, not like it was

> permanently stuck

> there!). I am so glad she knew about it because I

> have talked with so many

> Moms that tort is not dx until 10 mnths and later,

> because as with plagio,

> the earlier you start treatment the faster your

> done! But even before the

> dx, we were conscious of repositioning and it didn't

> seem to help- now we

> know we were fighting a losing battle with the tort

> being a factor.

> To this day people (except for family now, in the

> beginning, they were the

> 1st to say, your overreacting, there is nothing

> wrong with his head, nobody's

> head is perfect!) still act as if I just wanted to

> torture him and put a

> helmet on him! They seem to dismiss the whole thing

> as if I was a paranoid

> mom, and a lot of those friends are starting to

> having babies with flat heads

> (or am I really paranoid!?). I was just thinking

> about it today actually,

> when some distant family members looked at him and

> said, " Oh, he looks fine

> " - and I say, " well, it took a lot of hard work

> and plus a band to get

> here " - then they think I want some kind of credit

> for be a super mom- NO-

> just the facts ma'am! A picture tells a thousand

> words! also had

> the smaller eye, the puffier cheek- all history now

> thanks to the band and

> pt.

> That is why I found such relief with talking to

> parents here and the tort

> board. Only people walking in your shoes can

> understand the emotions that

> come with this. Yes, its not fatal, thank God, but

> it is a condition, and

> when you have a baby, that's the last thing you want

> to hear- that there is

> ANYTHING wrong with your baby! And to find that you

> are now responsible for

> life changing decisions- that's a whopper of a

> rollercoaster to ride alone.

> So, I am so glad I had friends riding with me and my

> husband, it made all the

> difference in the world- and I hope it will for you

> too!

> My ped did not recommend going with the band, said

> his misaligned ears were

> an optical illusion- I educated myself and made the

> decision for my son that

> the Band was our best route. I have never regretted

> that decision once!

> And- family will ease up once they see how much

> correction your daughter

> gets- trust me! My parents were my biggest

> opposition, and after it was

> over, they wanted him to wear the band all the time

> because they thought he

> looked cuter! Sorry so long, but I get very

> connected when people share

> that they are dealing with tort as well. If I can

> ever help you in anyway,

> please feel free to email me- I would love to help

> someone the way I was

> helped out so much!

> BTW- is now resolved and doing fantastic!

> Good luck to you and all

> the best to Mya!!

>

> ' Mom

>

>

__________________________________________________

[Guest guest]

In a message dated 2/9/02 9:36:21 AM Central Standard Time, hags1@...

writes:

<< my Grace

absolutely HATED hats or you messing with her head in any way shape or form.

>>

was the same way, but never cared about the helmet one little bit!!

Marci

[Guest guest]

That is funny! They sure are little troopers aren't they! --

[Guest guest]

Christi,

I'm sure Mya will have no problem adjusting- you may in the beginning- but she probably will do just fine! Good luck with your appt. tomorrow and let us know how it went!

' Mom

[Guest guest]

,

I sure can relate to this! I'm sure many others can too. Don't feel bad about

it. So many of us have struggled to find out what is going on, and some have

taken many years to get an answer. RA is not easy to diagnose and to many

doctors are quick to blame it on woman's emotions. What makes it harder is

that it is different in all of us. Some people have a mild case and can go on

with

life with minor aches and pains. Others I've met have had this disease strike

every

joint in their body. Since there are no specific tests that say yes you have

it or

no you don't, doctors are sometimes stumped, and it may take a long time to get

answers. I'm sure there are several people on this list that can relate to

what you went through.

I guess I've also been in denial.. I stayed with

one rheumy for 15 years and accepted whatever he said or prescribed

because I didn't know much about RA or the treatment. When the Internet

became available and we could research, I realized that I don't have the

" classic " hand involvement that the majority of RA patients have, nor

did I have any fevers, nor was I susceptable to infection. Quite the opposite,

I rarely get infections. One day I passed a doctor that had Fibromyalgia on his

sign. I made an appointment and this doctor diagnosed me with FM and PA.

He based this PA diagnosis on one small patch of dry skin in my scalp and

dry patches around my nose, and the fact that my daughter has psoriasis.

After many disagreements with him, I moved on to another doctor. This one says

it doesn't matter if it's RA or PA, they are both treated the same. They are

both

rheumatic diseases and do the same damage. I guess what it comes down to

is that I am stubborn. I know in my heart that all my problems with

inflammation

started after arthroscopic surgery on my knee after an auto accident. I know

in my heart that it started with an infection. Getting a doctor to agree with

me

and treat me with antibiotics has been impossible unless I travel a good

distance

to a doctor that treats RA with antibiotics. I went to one antibiotic doctor,

but

wasn't comfortable with the fact that he did nothing but write a prescription.

No

exam, no blood tests, not even on follow up visits after being on the AB's for

a few months. I guess this has made me leary to see another AB doctor, but I

really should make the committment and travel the distance. It's hard to know

what

to do. Then I get mad at myself for being in denial. It would be so much

easier on

myself if I just accepted what the professionals say I have and stop searching

for

answers. But that is hard to do when even these professionals don't know what

causes rheumatic diseases.

You have nothing to apologize for. None of us like taking the meds we take, but

we

also can't watch our joints being chewed up by this wretched disease. I thank

you for

sharing your story. I'm sure it will help others that are searching for

answers.

a

>

> [ ] (unknown)

>

>

> Hi Everyone,

>

> I am writing to tell you all a story of mine and maybe one of you can

> relate to this. For the last 6 years, I have been in and out of

> doctors offices and the diagnosis's were astonishing. One was too

> much time on my own with my then two children. That doctor got

> a " nice letter " from me. The next was Lyme and the next was Lyme.

> So

> I was treated for Lyme, and quite a few months on the AntiBiotic IV.

> Still no relief from pain and I was told that Lyme could be residual

> and to expect pain in the joints for the rest of life especially with

> the changing weather. Well a few years had past with slight or no

> pain and I sort of forgot about everything. When my daughter who is

> now 3 ½ was born, came another auto-immune disease, Hyperthyroid

> which was great at the time for me. I lost 45 lb. when she was 4

> weeks old, had all the energy that was humanly possible and life was

> grand until I found out that this was a Thyroid problem, but was told

> that this could go all away within 6 months. And it did!

>

> In December, 2001 I took a fall on the ice which put my neck in spasm

> and brought me into the ER. I went home with Vioxx and took a few

> days to get my neck back again. Then one morning it hit, all over

> again, the pain in my knees, and almost every joint in body was

> screaming in pain. For days, I was in bed and then finally made an

> appointment with my regular doctor. She said it was Fibromyalgia and

> gave me some antidepressants and said this should work. Two more

> doctors and then finally a Rheumatoligist. The Rheumatoligist first

> said I had PA and then the sed rate came back and he confirmed RA.

> Well after a year on Medrall and MTX, I felt better. I felt so good,

> that I spoke to my Rheumy and I told him I did not want to be on the

> Prednisone any more. He said I had to be in case I flared again and

> this would keep me out of a flare. Well my denial kicked in full

> force and I weaned myself off the drugs ( I read almost every article

> on the Internet how to wean off this stuff) and I did. Then I sold

> my home, bought another last summer and you know all the work

> involved with moving and three young kids. I put myself off for

> awhile and took care of the kids, the house and everything else, but

> me. I said to myself, there is nothing at all wrong with me. Yes,

> sometimes I feel pain in my joints, yes, sometimes my knees won't

> go

> up the stairs, without some pain, but hey, I did a lot of damage to

> my knees with a ski accident and even a car accident when I was

> younger. That is that pain and I do not have anything else wrong with

> me. I stopped seeing my Doctors, because I was tired of all the

> different diagnosis's and I was tired of taking those potent toxic

> meds. There was nothing wrong me. Boy was I wrong and everyday I

> learn more and more about this dreadful disease.

>

> The pain started coming back, nothing too much, but it was there. I

> made an appointment with another Rheumatoligist and he did feet and

> hand X-rays, did a ton of blood work and spent awhile with me

> talking. By the time I left there, I was confirmed again with a

> second diagnosis of RA. He said this disease plays it games like this

> and makes it hard for your family and friends to believe and it is

> even harder sometimes for you to believe. It hit me harder this time

> then the first diagnosis because I felt the first doctor could be

> wrong. I always had that denial, but after looking at my X-rays and

> hearing the words from the second doctor, I do finally believe that

> this is what I have. This is good and bad, good so I will take care

> of myself now and bad because, well you know why.

> It is funny on how denial can be so bad for people and I have learned

> another great life lesson.

>

> I am writing to you all and apologizing. I am apologizing for

> doubting this disease and not fully accepting the fact that there

> really is a disease that can do what it is doing. I wrote to the

> board a few times, but nothing that could help others. I hope this

> letter touched at least one person. I want to give back what I have

> received from you all. I am on the road to fully accepting and now

> concentrating on myself, because my family does need me in good

> working order and I need myself to get better.

>

> Thank you all for allowing me to grow with all of your words that you

> put out here on this great message board.

>

> Your Truly,

> from NY

>

>

>

>

[Guest guest]

I have 3 kids what type of advice were you looking for?

> That's funny Kellie, my friend is in the same exact boat, arguing

over the

> 2nd or divorce.......she wants one, he doesn't. He didn't want the

first,

> but of course loves him. She threatens about the " accident "

technique also.

> Hubby and I discuss it, but then quickly say, " how " could we

possibly handle

> two? I can't see it happening for another couple of years, if at

all. But I

> have felt that urge to at times- and they say, what the heck are

you

> thinking, you complain about doing everything yourself now, can you

imagine

> double! Any moms out there with 2-3 kids with words of advice?

>

> ' Mom

[Guest guest]

Hey CMZ,

Well, I guess how do manage 3 kids for starters

Are you a SAHM? What ages are your kids? Do they all get along well?

[Guest guest]

Thanks Debbie!

[Guest guest]

I have been lucky enough to be a part of.

We're lucky to have YOU be a part of the group! I for one am not

very educated on tort. and having you always offer such great advice

& help to tort. parents is a wonderful asset to us all!

Debbie Abby's mom DOCgrad

MI

[Guest guest]

AWWWWWW- he's so cute Kelli! That tilt looks so familiar!!! (My)

had left tort also. Luke's head shape looks a little different, or maybe its

just hard to tell with pics- heck even in person you think your mind plays

tricks on you with your child's head shape- one day we thought it was better,

next day we thought it was worse!! had more of a high spot on the

right back. I didn't spot any noticeable facial asymmetry or ear

misalignment, have you? Please keep us posted on how little Lukester is

doing!

' Mom

[Guest guest]

Thanks,we think he's pretty adorable!

When I look at him in the mirror his face looks a little " off " but

not anything I can pinpoint.

> AWWWWWW- he's so cute Kelli! That tilt looks so familiar!!! (My)

> had left tort also. Luke's head shape looks a little different, or

maybe its

> just hard to tell with pics- heck even in person you think your

mind plays

> tricks on you with your child's head shape- one day we thought it

was better,

> next day we thought it was worse!! had more of a high

spot on the

> right back. I didn't spot any noticeable facial asymmetry or ear

> misalignment, have you? Please keep us posted on how little

Lukester is

> doing!

>

> ' Mom

[Guest guest]

Anytime - I am the proofreading queen here at work, so bring it on!

[Guest guest]

Dana,

Not scared at all- I know is in the loving care of his great mommy and

daddy!! You wouldn't be here if you didn't want all the best for your son

and your concern shows you are always on top of it!! Good job mom!

' Mom

[Guest guest]

In a message dated 5/8/2002 9:24:32 PM Central Daylight Time, dsmith001@... writes:

.. I was explaining to Darcy that 's head shape changed so

much that the strap was useless (except to keep it on his head). As

for the red mark, I shouldn't call it red...pink more like it...

goes away in an hour

Hey Dana as long as it goes away in an hour you re in good shape-keep up the good work.

Beck

[Guest guest]

Beck,

You said it!!!! I've been goobered for life! ;o)