help!!!

March 1, 2002

low and slow - follow andy's reccomended dosage and go 3 days on 11 off to

start. And you HAVE to get the supplements in him. They are as important as

the DMSA.

March 1, 2002

--hI, If you go to the files section you will find lots of helpful

info on protocal and suppliments you should use while chelating. There

is a lot of really good information there. Good luck! You need to be

on top of EVERYTHING as most docs are not unfortunately.

Patti

- In @y..., " dannkan " <dannkan@y...> wrote:

> Hello to everyone. I am new to this group, but have already learned

> some valuable things from everyone the last two days. I'm writing

> because I am getting ready to start my 3 and a half year old on DMSA

> for his frist round. He is autistic, and we have been working with a

> DAN DR to treat the " symptoms " of the toxicity issue (love how Andy

> put that). I agree completely. I guess I'm feeling like I can't trust

> my DAN DR because he hasn't told us really ANYTHING about increasing

> zinc and supplements during chelation, hasn't even mentioned the use

> of ALA,etc. At our last visit, I told the DR that my son just won't

> take his supplements-- I've tried every imaginable means to get them

> into him. My DR wasn't concerned at all--just told me to go ahead and

> start the DMSA. I know there's SOME kind of protocol for chelation.

> We are just getting through a second round of Diflucan for a yeast

> problem and my son is on a casien/gluten free diet, so

> supplementation is a major concern of mine.I have worked tirelessly

> ever since we got a diagnosis for my son to give him a fighting

> chance for a somewhat normal life. I don't want to screw up this

> chelation thing so that it doesn't work optimally or in any way hurt

> my son. Any suggestions would be appreciated.

>

> Kandis

March 1, 2002

Hello everyone I have a 5 year old with Autism... Guess what it does

get better, my son is now playing with bikes and other kids at

preschool> I think it is because of the DMSA taking toxin out of my

son. There is a protacol that the Autism Reserch Institute has that

we printed off the internet it has charts of everything you need and

goes by your childs weight . This institute is who trains your DAN

Dr.I like knowing more about the chelation then my Dr. I can keep

him on his toes. Get a copy of every test; the reading is facinating

and there is alot of other info that most Dr. don't have time to

read.I mix Zinc,Vit B, DMG and 10 other thing in a Half water half

honey mixture three times a day and give it to my son from a

eyedropper.

> > Hello to everyone. I am new to this group, but have already

learned

> > some valuable things from everyone the last two days. I'm

writing

> > because I am getting ready to start my 3 and a half year old on

DMSA

> > for his frist round. He is autistic, and we have been working

with a

> > DAN DR to treat the " symptoms " of the toxicity issue (love how

Andy

> > put that). I agree completely. I guess I'm feeling like I can't

trust

> > my DAN DR because he hasn't told us really ANYTHING about

increasing

> > zinc and supplements during chelation, hasn't even mentioned the

use

> > of ALA,etc. At our last visit, I told the DR that my son just

won't

> > take his supplements-- I've tried every imaginable means to get

them

> > into him. My DR wasn't concerned at all--just told me to go

ahead and

> > start the DMSA. I know there's SOME kind of protocol for

chelation.

> > We are just getting through a second round of Diflucan for a

yeast

> > problem and my son is on a casien/gluten free diet, so

> > supplementation is a major concern of mine.I have worked

tirelessly

> > ever since we got a diagnosis for my son to give him a fighting

> > chance for a somewhat normal life. I don't want to screw up this

> > chelation thing so that it doesn't work optimally or in any way

hurt

> > my son. Any suggestions would be appreciated.

> >

> > Kandis

March 1, 2002

dannkan <dannkan@...> wrote: Hello to everyone. I am new to this group,

but have already learned

some valuable things from everyone the last two days. I'm writing

because I am getting ready to start my 3 and a half year old on DMSA

for his frist round. He is autistic, and we have been working with a

DAN DR to treat the " symptoms " of the toxicity issue (love how Andy

put that). I agree completely. I guess I'm feeling like I can't trust

my DAN DR because he hasn't told us really ANYTHING about increasing

zinc and supplements during chelation, hasn't even mentioned the use

of ALA,etc. At our last visit, I told the DR that my son just won't

take his supplements-- I've tried every imaginable means to get them

into him. My DR wasn't concerned at all--just told me to go ahead and

start the DMSA. I know there's SOME kind of protocol for chelation.

We are just getting through a second round of Diflucan for a yeast

problem and my son is on a casien/gluten free diet, so

supplementation is a major concern of mine.I have worked tirelessly

ever since we got a diagnosis for my son to give him a fighting

chance for a somewhat normal life. I don't want to screw up this

chelation thing so that it doesn't work optimally or in any way hurt

my son. Any suggestions would be appreciated.

Kandis

Dear Kandis--My Dan doc did the same thing. My daughter ( 9 tomorrow) was put

on Dmsa w/o any additional supplements and she had a terrible reaction. I think

many of these docs go to 1 or 2 meetings about autism and protocals then never

go back or update themselves. You are right to read these e-mails daily because

that is the best info., especially from Andy. Go to files and read about

supplements, etc. then ask any remaining questions to the group. My daughter

also is hard to get supplements into ( her OT at school is going to start

" training " her on pill/capsule swallowing) but I use liquid calcium/magnesium

mixed with small juice, chewable acidopholis wafers, gse mixed with ice water,

chewable vit.c, liquid vit.a, chewable multi vits. and chewable enzymes (not

from Houston but am thinking of trying these.) Research what you need and just

do it. Your Dan doc can order tests when you need them but you are more the

expert than he is re. what your son needs. Take Care---

March 1, 2002

Remember, nutritional supplements are just food. They don't have to

be an icky horrible experience. Some taste good, some have little

taste, others are icky.

Sodium ascorbate and magnesium ascorbate powder are readily available.

They have no taste, They go in juice or anything else he drinks. If

you are using " magnesium ascorbate, " dissolve it in water FIRST and

let it stand (swirling occaisionally) until it isn't tart any more and

most of the white powder has dissolved.

Most citrates are also tasteless. They dissolve well.

You can get molybdenum in liquid form (a solution) from Pharmax, or

your doc can order it for you. It goes in juice.

Vitamin A can be gotten in liquid form as CLO, or from the Life

Extension Foundation.

Vitamin E can be gotten as liquid from NOW foods (only through health

food stores, most carry it) or you can just open gelcaps. It ias

bland tasting.

Flax seed oil tastes OK if you buy Udo's Choice brand. Many other

brands taste bitter. The Vitamin Shoppe house brand actually is udo's

choice and tastes fine. It can just go in food, but don't cook with

it.

B-12 lozenges from The Vitamin Shoppe (the 3 mg ones) taste good and

sweet. He'll eat them like candy. The 5 mg ones from NOW foods are

cheaper but don't have much of a taste. They can however be

disssolved in juice easily.

There are tons of tasty chewable C and also zinc lozenges on the

market.

Epsom salt baths get magnesium and sulfate into him without it having

to go down his throat.

Twinlabs has a brand of chewable vitamins - animal friends - that has

lots of B complex in it. B complex tastes icky so don't feed it to

him in juice or he'll start objecting to vitamin juice. Some people

find there is an aftertaste to this so feed him something else right

afterwards.

" vitamin juice " can also be turned into vitamin jello with some

unflavored gelatin.

With sodium ascorbate you can sprinkle it on food and mix it in food

so as to get it into him throughout the day without any fuss. He

doesn't need to know it is there.

Do be aware that ascorbic acid powder - straight vitamin C - is very

tart. You want some mineral ascorbate.

NAC, milk thistle, etc. do seem to be " icky, " so you either have to

skip them for a while or be creative.

Some vendors like Kirkman's have developed tasty vitamin powders with

lots of stuff in them. One seldom mentioned on list that is pretty

good (unless you have a " high sulfur " kid) is Life Extension Mix from

the Life Extension Foundation. They list a BIG bottle for about $84,

but if you call and ask, they have a smaller bottle for about $20. It

has everything you can imagine in it, and then some.

Hope this helps

November 29, 2002

> What now? Another dose

> w/i the hour, wait 3 hours or stop now?

Hi,

I don't really know if this is correct, but I would just give her another dose.

Valentina

November 29, 2002

> Started 2nd round of chelating on Wednesday afternoon, every 3 hours

w/ ALA.

> This morning 15 minutes after am dose while jumping on trampoline

she spit

> up/threw up!

I think the ALA upset her stomach enough that the jumping around

caused a small spit-up. Also, ALA does tend to aggravate yeast, so it

might be that also.

I would continue the round, but don't let her jump around so much for

at least 30 minutes after each dose. And consider yeast issues

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

Dana

November 29, 2002

This is a hard call.

I'd keep going from the sounds of it. You could also re-dose promptly

(from the time stamp I'm not saying this timely for you to actually do

it) or stop.

Andy . .. . . . . . . .. . . . . . . . . .

> Started 2nd round of chelating on Wednesday afternoon, every 3 hours

w/ ALA.

> This morning 15 minutes after am dose while jumping on trampoline

she spit

> up/threw up! Not a lot, but enough to concern me. What now?

Another dose

> w/i the hour, wait 3 hours or stop now?

>

> Valeri, mom to:

> Jenna (4 1/2 mercury poisoning from childhood vacc

March 5, 2003

Hello,

I have a quick thought that struck. My son and I both have

sensory issues and bus rides put us both to sleep... would sleep

almost every day on the way home and it is due to the vibration.

Could sensory issues be at fault for his fear. Like I myself am

scared of certain rides at carnivals because my body doesn't know how

to process the sensations. Maybe the vibrations or the feel of the

bus in motion scare him????? Anyway just something to think about.

Good Luck, Crystal

April 19, 2004

Hi, Ruby Tuesday!

I'm sure the group has filled you in on all kinds of info on AP (antibiotic

protocol) for possible RA (rheumatoid arthritis or reactive arthritis).

I went to a doc in the DC area, who has a website, Dr. Gabe

Mirkin@..., and he prescribes antibiotics for quite a few

supposed " autoimmune " diseases. You can download his 10 page article called

" Why I Prescribe Antibiotics " by Gabe Mirkin, and take that info to your

open-minded doc. Usually, rheumatologists are not good about prescribing

AP-they just want to put you on DMARDS (disease-modifying anti-rheumatic

drugs) that suppress your already screwed up immune system and are VERY hard

on your body and VERY expensive.

I think it costs $10 to download Mirkin's article, but it is well worth it.

I took it into my doc (family doc/general practitioner, NOT a rheumie:),

last year, when we moved here, and he took the article and said that I

looked good and he would go with Mirkin's AP!! I was so relieved. This

superb group gave me his name as a possibility for prescribing AP-Harold

Hedges, IV. His dad is also still practicing and was named one of L.Rock's

best docs. However, I called last June and talked to Jr's and Sr's nurses

and Sr's nurse said he would NOT prescribe AP. Jr's said it depended on

circumstances and I went in and Jr said " I understand you're here to

interview me " What a sweet feeling of power to hear him say that-I am able

to choose my own doc under our insurance plan (ain't I lucky?!) and he also

took Tri-Care (military insurance plan and many docs will not work with Tri

Care). So, all kinds of wonderful little miracles were taking place.

Anyway, I am rambling. I do want you to take Mirkin's info in to your doc,

too. Even open minded docs can get pissy sometimes, so document, document,

document....! Mirkin's pretty (in)famous around the DC area. He can be a

pill, and pompous, but he saved my life as far as I'm concerned. As has Dr.

Hedges, Dr. Brown, who wrote the " New Arthritis Breakthrough " with Henry

Scammell, and this group....

Thanks all and Good luck, Ruby!

Sally in Little Rock, Ark, USA

rheumatic help!!!

> I tried to post last night but it didn't work...

> I am new to the group and need some advice..

> In Oct I began to experience pain and stiffness in my hands, i

> shrugged this off as a bit more arthritis, (previously just a few

> knuckles bothered me) no problem I thought. That has turned out to

> be a wrong assumption. As of now just about every joint is sore or

> stiff, my hand are awful. I am almost always swolen and hurting.

> My Md got me into a Rheumotologist who ,after 2 visits tells me he

> can't help me ,to go to my Md and get vioxx.. Needless to say

> neither my Md nor I were impressed. Since I saw the Doc we have

> figured out that it is possible that a med that I take for reflux

> (pariet) is the culprit for the massive increase in affected joints.

> We tried me on another acid reducer but that failed. Turns out it

> was the only one we could find that didn't have the artritis side

> effect....

> So here are my questions......

> 1. Does OA usually act this fast?

> 2. Is there any alternatives to the Pariet out there. Natural or

> otherwise...

> 3. Is there some info that I can take to my Md that will help her

> help me. She is realy openminded.

> 4. Does anyone know a Rheumotologist in the Burlington ontario

> vicinity that will take someone in quick?

> The best apt I can get with a new Dr is Oct.

> I am realy afraid that at the rate my body is stiffening up that by

> the time i see someone I will realy be in serious trouble..

> If anyone can help I would appreciate it.

> Thanks

> Ruby

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

August 1, 2004

What day of the cycle are you on? What is the dose size mg-wise?

I think you need at least three days of dosing or seventy-two hours. Some go

beyond. One or two here have stated that they gave doses ever eight hours on

a regular basis.

In a way I suppose you " accidentally " decided to continue the round already,

and I wouldn't mess with the idea of diluting the doses.

I do know Andy says it's ok to stretch the dosing at night to every four

hours, but get back to every three during the day. So a late dose by an hour

should be ok.

[ ] HELP!!!

I hope someone is out there that can help me with this:

My husband took our daughter for a ride this afternoon so I could get a

nap, and I sent her afternoon

chelation dose with him and he forgot to give it to her, but didn't tell

me until after I had given her

the next one, so she skipped the four o'clock, and got the 7 p.m., a

little late because they got

back at about 7:20 p.m. and about 8:30 he discovered the 4 p.m. dose

still in his pocket.

What should I do? Should I just keep going through the night, and taper

off, meaning dilute

the doses down more to slow the chelation process down, or just stop now

before the next

dosing?

Thanks.

Marina

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

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August 25, 2005

I think we parents are the keenest observers & if you're concerned

about it

and it's coming off Monday, anyway, I would go ahead and take it off.

I did have this happen and wish that I'd gone with my gut. Instead,

I let OTs

dismiss me for " imagining things " and bully me into keeping a

poorly-fitting

helmet on my dd's head. I don't know, myself, if an uneven area

created by a

helmet can correct itself.

Go with your gut, I say, and be persistent. Good luck!

in Atlanta

dd spent 4 mos in a Starband

on to a Doc band

> I just noticed tonight that 's helmet is causing a ridge

right

> next to the holding area on his forehead. You know how the holding

> area curves around? well, the ridge follows that curve. Looking

> straight on his face, I can see that his forehead has grown

slightly

> upwards immediately NEXT to the holding area, so that his head is

> looking ever so slightly uneven (heightwise). He is supposed to

stop

> wearing the band next Monday. I did notice last week that

something

> seemed not quite right...I felt a slight bump, but I just thought

that

> it was normal. Has anyone else had this happen? DId it go away

once

> the band was discontinued? He still has room for improvement in

the

> back, but if it is going to mess up his appearance from the front,

I

> would rather just discontinue? SHould I bring this up with CT? I

> HOPE it just evens out as his head grows without the band. Do they

> ever shave the holding area a little or has he officially just

> outgrown the band? Shouldn't she have caught this?

August 25, 2005

Sorc,

Hello, I've missed you. Could it be fluid or is it a definite ridge? I

would call and have them check it out, he may have finished early on

you. You don't want to risk it getting too tight. It is probably just

an area of growth that hasn't quite evened out yet(went thru it with

Dom and it scared the heck out of me), but why chance it. As far as

them catching it, it's one of those things. He is growing and it may

have been fine at his appt, but he decided to do one of those growth

spurts where you put the clothes on that he just wore and they are all

of a sudden too small,lol. Give them a call. Let me know what

happens....I can't believe he is already almost graduating.

CAROLG

> I just noticed tonight that 's helmet is causing a ridge right

> next to the holding area on his forehead. You know how the holding

> area curves around? well, the ridge follows that curve. Looking

> straight on his face, I can see that his forehead has grown slightly

> upwards immediately NEXT to the holding area, so that his head is

> looking ever so slightly uneven (heightwise). He is supposed to stop

> wearing the band next Monday. I did notice last week that something

> seemed not quite right...I felt a slight bump, but I just thought

that

> it was normal. Has anyone else had this happen? DId it go away once

> the band was discontinued? He still has room for improvement in the

> back, but if it is going to mess up his appearance from the front, I

> would rather just discontinue? SHould I bring this up with CT? I

> HOPE it just evens out as his head grows without the band. Do they

> ever shave the holding area a little or has he officially just

> outgrown the band? Shouldn't she have caught this?

August 26, 2005

Jack had some fluid build up around that area and it

has gone away since the helmet came off.

--- sorcamc <sorcamc@...> wrote:

> I just noticed tonight that 's helmet is

> causing a ridge right

> next to the holding area on his forehead. You know

> how the holding

> area curves around? well, the ridge follows that

> curve. Looking

> straight on his face, I can see that his forehead

> has grown slightly

> upwards immediately NEXT to the holding area, so

> that his head is

> looking ever so slightly uneven (heightwise). He is

> supposed to stop

> wearing the band next Monday. I did notice last

> week that something

> seemed not quite right...I felt a slight bump, but I

> just thought that

> it was normal. Has anyone else had this happen?

> DId it go away once

> the band was discontinued? He still has room for

> improvement in the

> back, but if it is going to mess up his appearance

> from the front, I

> would rather just discontinue? SHould I bring this

> up with CT? I

> HOPE it just evens out as his head grows without the

> band. Do they

> ever shave the holding area a little or has he

> officially just

> outgrown the band? Shouldn't she have caught this?

>

__________________________________________________

August 26, 2005

Well, like I said, I did notice a small raised area last week, but

thought it was in my head. We were just there on Monday of this

week and she took a lot out of the foam. I just wish she had

noticed that the holding areas were getting too tight. I took that

band off last night in the middle of the night. I was SICK with

worry and just decided to go with my gut.

> Sorc,

> Hello, I've missed you. Could it be fluid or is it a definite

ridge? I

> would call and have them check it out, he may have finished early

on

> you. You don't want to risk it getting too tight. It is probably

just

> an area of growth that hasn't quite evened out yet(went thru it

with

> Dom and it scared the heck out of me), but why chance it. As far

as

> them catching it, it's one of those things. He is growing and it

may

> have been fine at his appt, but he decided to do one of those

growth

> spurts where you put the clothes on that he just wore and they are

all

> of a sudden too small,lol. Give them a call. Let me know what

> happens....I can't believe he is already almost graduating.

> CAROLG

>

> --- In Plagiocephaly , " sorcamc " <sorcamc@y...>

wrote:

> > I just noticed tonight that 's helmet is causing a ridge

right

> > next to the holding area on his forehead. You know how the

holding

> > area curves around? well, the ridge follows that curve.

Looking

> > straight on his face, I can see that his forehead has grown

slightly

> > upwards immediately NEXT to the holding area, so that his head

is

> > looking ever so slightly uneven (heightwise). He is supposed to

stop

> > wearing the band next Monday. I did notice last week that

something

> > seemed not quite right...I felt a slight bump, but I just

thought

> that

> > it was normal. Has anyone else had this happen? DId it go away

once

> > the band was discontinued? He still has room for improvement in

the

> > back, but if it is going to mess up his appearance from the

front, I

> > would rather just discontinue? SHould I bring this up with CT?

I

> > HOPE it just evens out as his head grows without the band. Do

they

> > ever shave the holding area a little or has he officially just

> > outgrown the band? Shouldn't she have caught this?

August 26, 2005

How would you know it is fluid? This feels very hard, like bone.

>

> > I just noticed tonight that 's helmet is

> > causing a ridge right

> > next to the holding area on his forehead. You know

> > how the holding

> > area curves around? well, the ridge follows that

> > curve. Looking

> > straight on his face, I can see that his forehead

> > has grown slightly

> > upwards immediately NEXT to the holding area, so

> > that his head is

> > looking ever so slightly uneven (heightwise). He is

> > supposed to stop

> > wearing the band next Monday. I did notice last

> > week that something

> > seemed not quite right...I felt a slight bump, but I

> > just thought that

> > it was normal. Has anyone else had this happen?

> > DId it go away once

> > the band was discontinued? He still has room for

> > improvement in the

> > back, but if it is going to mess up his appearance

> > from the front, I

> > would rather just discontinue? SHould I bring this

> > up with CT? I

> > HOPE it just evens out as his head grows without the

> > band. Do they

> > ever shave the holding area a little or has he

> > officially just

> > outgrown the band? Shouldn't she have caught this?

> >

>

> __________________________________________________

>

August 26, 2005

All I know is that with Jack -- the area around the

holding place on the forehead was like the area around

the closure. I brought it up several times with CT.

After his helmet came off, it went away after a while.

So it was just fluid. To me, it looked like the area

under the holding point was actually indented. It was

because fluid built up around the holding point. Also

his hair was so matted down. It didn't look as bad of

an " indent " if we had washed his hair.

Since Jack was about the same age as your son in the

band ... at our last visit, she shaved most of the

foam out, told us to take it off in a week, and to

watch for redness, which would mean that it needed to

come off. Well, he grew out of it actually sooner than

a week.

--- sorcamc <sorcamc@...> wrote:

> How would you know it is fluid? This feels very

> hard, like bone.

>

> >

> > > I just noticed tonight that 's helmet is

> > > causing a ridge right

> > > next to the holding area on his forehead. You

> know

> > > how the holding

> > > area curves around? well, the ridge follows

> that

> > > curve. Looking

> > > straight on his face, I can see that his

> forehead

> > > has grown slightly

> > > upwards immediately NEXT to the holding area, so

> > > that his head is

> > > looking ever so slightly uneven (heightwise).

> He is

> > > supposed to stop

> > > wearing the band next Monday. I did notice last

> > > week that something

> > > seemed not quite right...I felt a slight bump,

> but I

> > > just thought that

> > > it was normal. Has anyone else had this happen?

>

> > > DId it go away once

> > > the band was discontinued? He still has room

> for

> > > improvement in the

> > > back, but if it is going to mess up his

> appearance

> > > from the front, I

> > > would rather just discontinue? SHould I bring

> this

> > > up with CT? I

> > > HOPE it just evens out as his head grows without

> the

> > > band. Do they

> > > ever shave the holding area a little or has he

> > > officially just

> > > outgrown the band? Shouldn't she have caught

> this?

> > >

> >

> > __________________________________________________

> >

August 26, 2005

Sorc,

Push on it a bit fluid will give a little, bone will not. Did you

call CT,yet?

CAROLG

> >

> > > I just noticed tonight that 's helmet is

> > > causing a ridge right

> > > next to the holding area on his forehead. You know

> > > how the holding

> > > area curves around? well, the ridge follows that

> > > curve. Looking

> > > straight on his face, I can see that his forehead

> > > has grown slightly

> > > upwards immediately NEXT to the holding area, so

> > > that his head is

> > > looking ever so slightly uneven (heightwise). He is

> > > supposed to stop

> > > wearing the band next Monday. I did notice last

> > > week that something

> > > seemed not quite right...I felt a slight bump, but I

> > > just thought that

> > > it was normal. Has anyone else had this happen?

> > > DId it go away once

> > > the band was discontinued? He still has room for

> > > improvement in the

> > > back, but if it is going to mess up his appearance

> > > from the front, I

> > > would rather just discontinue? SHould I bring this

> > > up with CT? I

> > > HOPE it just evens out as his head grows without the

> > > band. Do they

> > > ever shave the holding area a little or has he

> > > officially just

> > > outgrown the band? Shouldn't she have caught this?

> > >

> >

> > __________________________________________________

> >

August 26, 2005

Sorc,

Poor thing! You must be so upset. It might just be fluid from the big

adjustment I had that alot with Dom, and it does go away. Let me know.

CAROLG

> > > I just noticed tonight that 's helmet is causing a ridge

> right

> > > next to the holding area on his forehead. You know how the

> holding

> > > area curves around? well, the ridge follows that curve.

> Looking

> > > straight on his face, I can see that his forehead has grown

> slightly

> > > upwards immediately NEXT to the holding area, so that his head

> is

> > > looking ever so slightly uneven (heightwise). He is supposed

to

> stop

> > > wearing the band next Monday. I did notice last week that

> something

> > > seemed not quite right...I felt a slight bump, but I just

> thought

> > that

> > > it was normal. Has anyone else had this happen? DId it go

away

> once

> > > the band was discontinued? He still has room for improvement

in

> the

> > > back, but if it is going to mess up his appearance from the

> front, I

> > > would rather just discontinue? SHould I bring this up with

CT?

> I

> > > HOPE it just evens out as his head grows without the band. Do

> they

> > > ever shave the holding area a little or has he officially just

> > > outgrown the band? Shouldn't she have caught this?

August 26, 2005

Sorc,

I'm just going to jump in here. It could be he had a big overnight

growth spurt. Where Monday it fit OK and then overnight the ridge

appeared. It is possible. Infants can grow fast and a lot in a

short period of time. I would contact CT before the weekend to set

your mind at ease. Are they close by? Could you just " run up " for a

quick check? or could you send a picture which really shows your

concern?

mom to na, 2 yrs (DOC Grad) & Kiersten 12 wks (preventative Repo)

www.thefilyaws.com

> > > > I just noticed tonight that 's helmet is causing a

ridge

> > right

> > > > next to the holding area on his forehead. You know how the

> > holding

> > > > area curves around? well, the ridge follows that curve.

> > Looking

> > > > straight on his face, I can see that his forehead has grown

> > slightly

> > > > upwards immediately NEXT to the holding area, so that his

head

> > is

> > > > looking ever so slightly uneven (heightwise). He is supposed

> to

> > stop

> > > > wearing the band next Monday. I did notice last week that

> > something

> > > > seemed not quite right...I felt a slight bump, but I just

> > thought

> > > that

> > > > it was normal. Has anyone else had this happen? DId it go

> away

> > once

> > > > the band was discontinued? He still has room for improvement

> in

> > the

> > > > back, but if it is going to mess up his appearance from the

> > front, I

> > > > would rather just discontinue? SHould I bring this up with

> CT?

> > I

> > > > HOPE it just evens out as his head grows without the band.

Do

> > they

> > > > ever shave the holding area a little or has he officially

just

> > > > outgrown the band? Shouldn't she have caught this?

September 6, 2005

Moira,

Hello and welcome. What a predicament you have on your hands. As far

as approaching the parents about it, that is a tough situation, but

one that must be dealt with. You can try and start by telling them

that you have come across some research that might help them with

Fraser. You can direct them to the Cranial Technologies website for

info. www.cranialtech.co.uk you can also direct them to

www.plagiocephaly.org and my son's website www.mybandedbaby.typpad.com

This might be enough to educate them on the subject. Seeing that

Fraser is 9 months old, you may have to bite the bullet and just lay

it out for them, they need to get treatment started as soon as

possible. It is not too late for Fraser, we have many babies here

that have started at 9 months and older and received excellent

correction. As far as the money problems go, I'm sorry I am not

familiar with the services offered in the UK, but we do have a few uk

members here and maybe they will give you more info. I do know that

you can check on the UK support board and I'm sure they will have

better info. on that matter, here is the address for it

http://groups.msn.com/PlagioUK/messages.msnw. Hope this helps,

CAROLG

--- In Plagiocephaly , " Moira " <little_hen_uk@y...>

wrote:

> HIYA. MY NAME IS MOIRA AND I AM THE AUNTY OF 'BABY' FRASER.

> I AM ON THIS WEB PAGE FOR SOME HELP FROM ANYONE AS I DON'T KNOW HOW

TO

> APROACH THE CURRENT SITUATION!! MY NEPHEW, FRASER, HAS A SEVERE

> FLATTENING OF HIS HEAD AND I THINK IT IS

PLAGIOCEPHALY..........INFACT,

> AS I WORK IN THE MEDICAL PROFESSION, I KNOW IT IS, BUT I DON'T KNOW

HOW

> TO TELL MY SISTER THAT HER 9 MONTH OLD BOY HAS THE CONDITION,

WITHOUT

> UPSETTING HER.

> SHE SEEMS TO THINK THAT 'FRASER'S HEAD' WILL STILL MOULD IN TO

SHAPE AS

> NORMAL, YET I KNOW THAT IT IS NOT GOING TO HAPPEN. MY SISTER AND

HER

> HUSBAND ARE BOTH UNEMPLOYED AND CANNOT AFFORD THE 'STARBAND' SO

WHAT

> ARE THEY SUPPOSE TO DFO????

> IF I HAD THE EXTRA CASH, I WOULD GLADLY GIVE IT TO THEM TO HELP

FRASER,

> BUT I DON'T. :-( I JUST DO NOT KNOW WHAT TO DO TO APROACH THE

> PROBLEM!!!

> I AM SO SAD ABOUT IT ALL, BUT I FEEL I HAVE TO DO SOMETHING BEFORE

IT

> IS TOO LATE FOR FRASER TO GET SOME HELP.

> CAN YOU GIVE ME SOME INFO ON WHAT I SHOULD DO??????

> REGARDS, MOIRA. :-)

September 6, 2005