New here

[Guest guest]

Hi, Jan, and welcome.

Yes, we're survivors, all right. Most of us are survivors of the other

site, too. :^) For now it appears that this is where the flatback action

is. Of course we're not perfect, but it is my opinion that the cause of the

problems at the other site has not followed us over here.

So please stay, let us get to know you, and share the journey with us.

Sharon

[ ] new here

> Hi all,

> I just found this site last night, after reading through some of the

> posts at another flatback site. I sure hope this place doesn't get

> nasty like some others. Or dissolve into few members and even fewer

> posts.

> Short version of my story: I had my scoli surgery in 1968 when I was

> twelve. Fusion, laminectomy, and 2 Harrington rods. Since '93 i've had

> increased pain, aggravated in 2001 by MVA. I'm 49 now, some days it's

> hard to walk, feel twisted, left hip constant pain, numbness and

> tingling down left leg.

> I started taking mirtazapine last Sept. for depression and anxiety. I

> fall asleep within 20 mins. and wake 8 or 9 hours later completely

> rested. This has been a godsend, since I wasn't getting enough sleep

> for years.

> It will take me awhile to get to know all of you, but I'm happy to find

> this bunch of survivors.

> jan

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hi Jan - and welcome! I think you will find this group much more agreeable than the other. All of us here are mainly interested in scoliosis problems....specifically post-Harrington Rod surgery problems. So pull up a chair and make yourself comfortable, and join us in our learning/questioning/sharing experiences!

~~

[Guest guest]

HI JENN..THIS IS CAROL FROM CONNECTICUT...SON TO DYLAN 4 MOS OLD...HE HAS

BEEN DIAGNOSED WITH MODERATE PLAGIO...AND I THINK HE HAS BRACHIO TOO....BUT

I HAVE USED THE " WEDGE " WITH MEMORY FOAM SINCE BIRTH AND OBVIOUSLY IT DIDNT

HELP....HE SLEEPS 10-11 HRS A NIGHT SINCE 8 WKS OF AGE.....WE WILL PROBABLY

HEAD TOWARDS GETTING HIM BANDED.....GOING TO HIS 4 MO OLD CHECK THIS

FRIDAY.......CAROL

new here

> Hi all! My son has not been diagnosed with plagio, but we have an

> appointment to see a pediatric neurosurgeon in 2 weeks. I voiced my

> concern to our family doctor at Cade's 4 month appointment, and we were

> referred. A brief intro- I am Jenn, mom to Caleb (9), Meghan (8), and

> Cade (4 months). My husband is in the army and we are currently

> stationed at Fort Benning, Ga. I have been doing lots of internet

> research since Cade's last appointment. I want to know what to expect

> at our appointment, and I was also looking for repositioning

> pointers. Cade used to HATE tummy time, but is enjoying it for

> longer periods of time now. He is a faithful back sleeper, and just

> today I bought a sleep positioner thingy with a memory foam thing for

> the head. Does anyone have any experience with this?? Anyway- I look

> forward to getting to know all of you....

> Jenn

>

>

>

>

>

>

>

> For more plagio info

[Guest guest]

HI JENN..THIS IS CAROL FROM CONNECTICUT...SON TO DYLAN 4 MOS OLD...HE HAS

BEEN DIAGNOSED WITH MODERATE PLAGIO...AND I THINK HE HAS BRACHIO TOO....BUT

I HAVE USED THE " WEDGE " WITH MEMORY FOAM SINCE BIRTH AND OBVIOUSLY IT DIDNT

HELP....HE SLEEPS 10-11 HRS A NIGHT SINCE 8 WKS OF AGE.....WE WILL PROBABLY

HEAD TOWARDS GETTING HIM BANDED.....GOING TO HIS 4 MO OLD CHECK THIS

FRIDAY.......CAROL

new here

> Hi all! My son has not been diagnosed with plagio, but we have an

> appointment to see a pediatric neurosurgeon in 2 weeks. I voiced my

> concern to our family doctor at Cade's 4 month appointment, and we were

> referred. A brief intro- I am Jenn, mom to Caleb (9), Meghan (8), and

> Cade (4 months). My husband is in the army and we are currently

> stationed at Fort Benning, Ga. I have been doing lots of internet

> research since Cade's last appointment. I want to know what to expect

> at our appointment, and I was also looking for repositioning

> pointers. Cade used to HATE tummy time, but is enjoying it for

> longer periods of time now. He is a faithful back sleeper, and just

> today I bought a sleep positioner thingy with a memory foam thing for

> the head. Does anyone have any experience with this?? Anyway- I look

> forward to getting to know all of you....

> Jenn

>

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi Jan,

I am guessing that your screen name tells us something about your

attitude....gotta laugh or you will cry...no?

It sounds like you have a lot in common with many of us and I hope

you will enjoy your time here. It is my sincerest hope that this

group continues to be a helpful and positive place. I think that is

the job of all the members and so far everyone seems to recognize we

all are responsible for making this place what it is...so feel free

to jump into the converstation!

Thanks also for your quick intro. When you get a little free time we

would love it if you would tell " your story " in more detail. It

helps us understand where you are coming from and we are using the

database feature so that in the future it will be easy to go back

and review a members story/timelines/doctors and it will be a little

easier to follow along for new members. If you haven't seen that

section yet it might be helpful for you too.

I hope we all get to know you better soon!

Take Care, Cam

[Guest guest]

Welcome aboard. It does help to follow others stories,with this special problem. No one really knows where we are going.So I guess we are making history.All of my life,everything I was told about this scoliosis,was wrong. So, I think that our stories are the proof of the pudding.I have learned so much from this group and truly appreciate it.gardengirl,Eileengot2laugh2003 <jancan7@...> wrote:

Hi all,I just found this site last night, after reading through some of the posts at another flatback site. I sure hope this place doesn't get nasty like some others. Or dissolve into few members and even fewer posts.Short version of my story: I had my scoli surgery in 1968 when I was twelve. Fusion, laminectomy, and 2 Harrington rods. Since '93 i've had increased pain, aggravated in 2001 by MVA. I'm 49 now, some days it's hard to walk, feel twisted, left hip constant pain, numbness and tingling down left leg.I started taking mirtazapine last Sept. for depression and anxiety. I fall asleep within 20 mins. and wake 8 or 9 hours later completely rested. This has been a godsend, since I wasn't getting enough sleep for years. It will take me awhile to get to know all of you, but I'm happy to find this bunch of

survivors.jan__________________________________________________

[Guest guest]

Hi Jenn,

Welcome to the group! My husband used to be stationed at Benning

too. We live in Atlanta now. Anyway, last year there was a mom who

received treatment in Columbus with a Starband or you can drive the

1 1/2 hours to Atlanta and check out Children's Healthcare of

Atlanta, they treat with the Starband and have a great reputation or

you can go across the street from them to Cranial Technologies, that

is who we used and they were great to deal with! We have many

members that have used both locations in Atlanta with success. If I

can help you in any way please email me directly.

Natasha

Atlanta, GA

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

wrote:

> Hi all! My son has not been diagnosed with plagio, but we have an

> appointment to see a pediatric neurosurgeon in 2 weeks. I voiced

my

> concern to our family doctor at Cade's 4 month appointment, and we

were

> referred. A brief intro- I am Jenn, mom to Caleb (9), Meghan (8),

and

> Cade (4 months). My husband is in the army and we are currently

> stationed at Fort Benning, Ga. I have been doing lots of internet

> research since Cade's last appointment. I want to know what to

expect

> at our appointment, and I was also looking for repositioning

> pointers. Cade used to HATE tummy time, but is enjoying it for

> longer periods of time now. He is a faithful back sleeper, and

just

> today I bought a sleep positioner thingy with a memory foam thing

for

> the head. Does anyone have any experience with this?? Anyway- I

look

> forward to getting to know all of you....

> Jenn

[Guest guest]

Jan,

Glad you are here. Hope we can help!

Eileen - I am day 9 of a ten-day cleanse and have not had any

refined sugar for 8.5 days. I read the word pudding and longed for

Friday to be here. It made me laugh and feel a bit of pain all at

once... Just thought I'd share my " agony " !

kam

Hi all,

> I just found this site last night, after reading through some of

the

> posts at another flatback site. I sure hope this place doesn't get

> nasty like some others. Or dissolve into few members and even

fewer

> posts.

> Short version of my story: I had my scoli surgery in 1968 when I

was

> twelve. Fusion, laminectomy, and 2 Harrington rods. Since '93 i've

had

> increased pain, aggravated in 2001 by MVA. I'm 49 now, some days

it's

> hard to walk, feel twisted, left hip constant pain, numbness and

> tingling down left leg.

> I started taking mirtazapine last Sept. for depression and

anxiety. I

> fall asleep within 20 mins. and wake 8 or 9 hours later completely

> rested. This has been a godsend, since I wasn't getting enough

sleep

> for years.

> It will take me awhile to get to know all of you, but I'm happy to

find

> this bunch of survivors.

> jan

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

>

>

>

[Guest guest]

Tricia,

Welcome and thanks for sharing a bit about you. I think that most if

not all of know how frustrating it is to do " normal " stuff and end up

regretting it. I hope this group benefits you as much as it has me.

Hope you have a " safe " weekend!

kam

[Guest guest]

In a message dated 08/08/2005 20:50:35 GMT Daylight Time,

aysha_vaseer@... writes:

We are currently having her hair analysed for toxicity, and will then

start a chelation process in November. Are enzymes involved in the

chelation process? Also for anyone whose children are going through

chelation, have you gotten good results.

>>>Hello

You can just get some enzymes and try them, a few weeks on this lits or on

s site and you will know more about them than the Drs

My son was on HNI enzymes for a year before chelation, I beleive they helped

with gut healing which in turn made the chelation process less problematic

with gut bugs. They are not directly involved in the process, but I think they

help it

Mandi in UK

[Guest guest]

Hi Trisha,

So glad that you found this board. Your experience sounds very

similar to mine and probably a good many others on the board.

I found a site like this very helpful when my back " gave out " for

the third time and I was getting the shaft from the ortho doctor I

was seeing at the time. His diagnose: " The big guy upstairs never

intended that human spines be fused " . He'd also never heard of a

condition called flatback and pronounced it a bunch of hooey and

then reiterated the whole " Big Guy " nonsense. What on earth the

large tenant on the third floors' opinion about the human spine had

to do with my pain was a mystery to me, so I sought out answers

elsewhere(in the midst of the most dibilitating pain I'd ever felt

and having had my marriage fall apart just months before,and losing

both my parents in a two year span, boy did I feel weak and alone!)

including online. Most of the people on this board are wonderful

members from that old board, and I can say wholeheartedly, that it's

a warm and supportive group with a lot of valuable information to

share. With the input, experiences and data available I found the

surgeon who did my revision surgery in July of 04.

I hope you find this board to be a valuable resource and a welcoming

place to share your experience with others who truly understand what

you're going through.

All my best, Dianne

<twilson2771@y...> wrote:

> Hi there! I'm new to this group but glad I found you!

>

> I had Harrington rod surgery in 1986. I don't have my records

here

> with me but I think it's T4-L4 with a bone graft from my right

hip.

> I've had bouts of pain off and on and the feeling like I could

feel

> the rod (which the drs always say isn't possible). I started

having

> more pain and discomfort, was in and out of PT for a time and

finally

> was diagnosed with flatback about five years ago. The dr

mentioned

> revision surgery but didn't feel I was a candidate yet - though he

> was also moderately concerned about some lumbar stenosis he saw on

> the xray. Then, two years ago, I was walking across the parking

lot

> at work and felt something in the middle right of my back pop. I

> ended up in the ER because the pain was unbearable and after a

visit

> to the pain mgmt dr at my orthopedic dr, ended up with an epidural

> injection. The pain was intense for two weeks but then leveled

off

> until three weeks ago. I was weeding and felt that familiar pop.

I

> ended up out of work for a week and the dr is saying I have lumbar

> radiculopathy (still need to look that up).

>

> I am having a lot of trouble recovering this time. I will be

going

> to see a new PT on Monday. My pain is more intermittent now but I

> just feel like anything can cause me to hurt myself and it

frustrates

> the daylights out of me. I don't sleep well, which doesn't help -

> just gave away my pillowtop because it was too soft and am now

> sleeping on an air mattress on my box spring.

>

> I'm not sure what else to say...just hoping for some encouragement

> and tips, I guess!

>

> Thank you!

>

> Tricia

[Guest guest]

Welcome Sharon,

I think we've all experienced the symptoms you are reporting. You

might want to browse the message archives (they are all collected

in groups of 500 messages at a time in the " Files " area).

Also, for the computer, you might want to try downloading the

free 15-day trial version of the Quantum Byte software and

see if it makes any difference:

http://www.quantumproducts.com/quantumbyteinfo/

I would also consider replacing your cordless phone with

a corded phone, if that is at all possible. Also, if

you have any energy efficient light bulbs (florescent),

I'd suggest replacing them with the old fashioned

incandescent lighting.

Marc

[Guest guest]

By the way Sharon, if you're looking for an explanation

for what is causing your reaction to cellphones and

computers, it seems that there are all sorts of

contradictory theories. And I suppose that different

people are reacting for different reasons. In my

own case, I subscribe to the theory that exposure

to the EMF fields opens

up your " blood-brain barrier " , which allows toxins

(like mercury, etc.) entry into your brain and

central nervous system. So a longterm solution

would be to " Detoxify " , but I can assure you

that this is easier said than done, and will take

a long time, and require a lot of money (e.g,

getting all of your silver dental fillings

removed is one typical step along the way). Short

term solutions involve avoidance of the EMF

fields, or transforming them into something

less harmful with devices, or building up your

resistance to them with diet, better nutrition,

excercise, etc.

Marc

[Guest guest]

Boy are you in for a surprise with this list. We have got a bunch of

recovery electrical sensitives that have been around the block, make

that the world a couple of times with detoxing, filters, diets, etc

also professional electrician types,. You name it, you can find it

here.

So, what would you like to know, other than you are not crazy. You are

experiencing a very real phenomenon. I recommend getting rid of your

cordless phone and get a regular old fashion land line, limit your cell

phone use as much as possible and keep the power turned off unless you

are using it. When you do use it, never put it against your head (use

the speaker phone).

Sit back as far from the computer as possible. There are thousands of

things you can do with your computer, electricity, shielding etc.

We'll get into that a little at a time so we don't bombard you all at

once.

Welcome to the list! I am not the moderator by the way, Marc is.

Happy you are here.

On Aug 23, 2005, at 3:21 PM, sharonx9 wrote:

> Hello all. My name is Sharon and I'm new here. I ran across this

> group when looking for info on how cell phones affect our bodies.

> Within the past few months, I've noticed that if I use my cell phone

> or cordless phone alot, I get dizzy and foggy brained. I have also

> started feeling this way if I sit at my computer too much. I haven't

> found too much info on this so I thought a group with other people

> would be the best way to go. I'm looking forward to any information I

> can obtain. Thanks so much...

>

>

> **Sharon

> In God's Hands

>

>

>

>

>

[Guest guest]

Hi all, I too, am new here.

Since I see many of you mention Mercury as a possible culprit, I

just wanted to let you know that Mercury chelation didn't really

help my sensitivities in this area. In fact, especially during the

chelation process, many of my symptoms worsened. So if you are

keeping yourself in a perpetual state of chelation, you may be even

more sensitive.

Cheers,

*S*

> By the way Sharon, if you're looking for an explanation

> for what is causing your reaction to cellphones and

> computers, it seems that there are all sorts of

> contradictory theories. And I suppose that different

> people are reacting for different reasons. In my

> own case, I subscribe to the theory that exposure

> to the EMF fields opens

> up your " blood-brain barrier " , which allows toxins

> (like mercury, etc.) entry into your brain and

> central nervous system. So a longterm solution

> would be to " Detoxify " , but I can assure you

> that this is easier said than done, and will take

> a long time, and require a lot of money (e.g,

> getting all of your silver dental fillings

> removed is one typical step along the way). Short

> term solutions involve avoidance of the EMF

> fields, or transforming them into something

> less harmful with devices, or building up your

> resistance to them with diet, better nutrition,

> excercise, etc.

>

> Marc

[Guest guest]

Hi all,

still of the opinion there is something spiritual going on here. so the key is

not to completely rid yourself of various metals, but to find balance in the

brain hemispheres/extremes of consiousness, and seek spiritual transformation so

the spiritual fire transmutes the metals in a purer form. keywords for a google

could be mercury, ascension alchemy or maybe philosophers stone... really!! not

entirely sure but the electronic belt probably is what we are dealing with

here..

this does not mean you need to have knowledge of all these principles, to

attain, i hope,,,.

Man the microcosm is a good article on-line where there is a pretty good

theoretical framework and i just started looking a little at alchemy again//

Love and Joy

Sue <invisigyrl@...> wrote:

Hi all, I too, am new here.

Since I see many of you mention Mercury as a possible culprit, I

just wanted to let you know that Mercury chelation didn't really

help my sensitivities in this area. In fact, especially during the

chelation process, many of my symptoms worsened. So if you are

keeping yourself in a perpetual state of chelation, you may be even

more sensitive.

Cheers,

*S*

> By the way Sharon, if you're looking for an explanation

> for what is causing your reaction to cellphones and

> computers, it seems that there are all sorts of

> contradictory theories. And I suppose that different

> people are reacting for different reasons. In my

> own case, I subscribe to the theory that exposure

> to the EMF fields opens

> up your " blood-brain barrier " , which allows toxins

> (like mercury, etc.) entry into your brain and

> central nervous system. So a longterm solution

> would be to " Detoxify " , but I can assure you

> that this is easier said than done, and will take

> a long time, and require a lot of money (e.g,

> getting all of your silver dental fillings

> removed is one typical step along the way). Short

> term solutions involve avoidance of the EMF

> fields, or transforming them into something

> less harmful with devices, or building up your

> resistance to them with diet, better nutrition,

> excercise, etc.

>

> Marc

[Guest guest]

From: Quai Xemen

I also experienced worsening symptoms when doing mercury removal.

Maybe it is because the mercury is recirculating in the blood stream

while it is either being removed or redoposited somewhere else. But

I have to think that I am much better off today after having all my

fillings removed than I was before. It took me an entire year to

have all my fillings removed as I had them removed one or two at a

time as my budget would allow. I had to pay the entire cost as I had

no dental insurance. They told me to wait until after they were all

out before I started chelating. I didn't take that advice. I got a

small barrel of calcium EDTA directly from a manufacturer for what

you might pay for a few bottles of it from an internet retailer. I

took huge amounts of it for about a year putting it into gelatin

capsules myself. I then bought an infra-red sauna and tried to sweat

it out. I then spent another year juicing huge amounts of cilantro.

Today I am no longer chelating. But I have no idea how much is left

if any.

> > By the way Sharon, if you're looking for an explanation

> > for what is causing your reaction to cellphones and

> > computers, it seems that there are all sorts of

> > contradictory theories. And I suppose that different

> > people are reacting for different reasons. In my

> > own case, I subscribe to the theory that exposure

> > to the EMF fields opens

> > up your " blood-brain barrier " , which allows toxins

> > (like mercury, etc.) entry into your brain and

> > central nervous system. So a longterm solution

> > would be to " Detoxify " , but I can assure you

> > that this is easier said than done, and will take

> > a long time, and require a lot of money (e.g,

> > getting all of your silver dental fillings

> > removed is one typical step along the way). Short

> > term solutions involve avoidance of the EMF

> > fields, or transforming them into something

> > less harmful with devices, or building up your

> > resistance to them with diet, better nutrition,

> > excercise, etc.

> >

> > Marc

[Guest guest]

What lab is the hair test from? It's important for you to know that for those

with mercury toxicity, generally mercury does not show up as high on hair tests.

Instead the mercury causes disordered mineral transport (so things like calcium,

sodium, potassium, etc, look all messed up. If it was a DDI test you can post

it here for help interpreting it (applying counting rules).

S S

--- On Wed 09/07, cr84work < jsievers@... > wrote

<tt>

I'm new here.  My 4 yr old son has sensory integration.  We started <BR>

him on Houston enzymes the beginning of April.  We saw about a 65 to <BR>

75 percent improvement.  We have recently gone to a homeopathic dr.  <BR>

He did a hair analysis on him.  I have to go in and talk to the dr. <BR>

in detail, but I do know he was high in aluminum and copper.  I <BR>

guess I really don't know where to begin.  Is it necessary to go on <BR>

a specific diet if you're doing enzymes?  He has placed him on the <BR>

Page diet, Phase II.  From what I can tell it is a diet that does <BR>

not allow any grains.  I have seen improvement with behavior, but <BR>

his diet is so limited.  He does not eat much of what's on the <BR>

list.  I'm a little worried about not having a well-ballanced diet.  <BR>

<BR>

I guess any insight from someone who knows or been there would be <BR>

helpful and encouraging.  I'm a little overwhelmed.  All I want is <BR>

to get him completely better.  Am I being unrealistic or is this <BR>

something we're going to be dealing with all of our lives?  Also, <BR>

like I said we are with a homeopathic dr. at this point.  I was <BR>

relieved to have someone who understands all this at first, but I <BR>

still feel very lost and confused by it all.  When I've called and <BR>

asked questions, they've gotten a little snippy with me.  Not the <BR>

reassurance I'm needing.  Is it better to be with a DAN dr. or <BR>

homeopathic dr.?  Just needing some direction.<BR>

<BR>

<BR>

<BR>

<BR>

</tt>

<!-- |**|begin egp html banner|**| -->

<br><br>

<tt>

=======================================================<BR>

[Guest guest]

In a message dated 9/10/2005 1:59:24 PM US Eastern Standard Time, ngubash@... writes:

Hi Angie,Welcome to the group. Please accept my sympathy for the loss of Jordan, that must have been an unbelieveably difficult time for you. Does Kayleigh have flatness or just an odd ridge?NatashaAtlanta, GA

Hi Natasha, thanks for the welcome. Kayleigh actually, well its hard to explain. We really weren't concerned with her forhead, it was the back of her head that I was concerned about when she had the CT scan. My husband has her exact same forhead, now I'm wondering if his metopic sutures fused to soon. My son also has the same forhead when he makes a certain face. Heres a picture of her.

Heres my husband on the left, see his forhead, I has always wondered why it was like that.

Heres Kayleigh, she only has the odd shape if she makes a certain face otherwise her face looks fine to me, like I said I was never really concerned about her forhead, ugh. Now I don't know what to think.

[Guest guest]

In a message dated 9/10/2005 1:59:24 PM US Eastern Standard Time, ngubash@... writes:

Hi Angie,Welcome to the group. Please accept my sympathy for the loss of Jordan, that must have been an unbelieveably difficult time for you. Does Kayleigh have flatness or just an odd ridge?NatashaAtlanta, GA

Hi Natasha, thanks for the welcome. Kayleigh actually, well its hard to explain. We really weren't concerned with her forhead, it was the back of her head that I was concerned about when she had the CT scan. My husband has her exact same forhead, now I'm wondering if his metopic sutures fused to soon. My son also has the same forhead when he makes a certain face. Heres a picture of her.

Heres my husband on the left, see his forhead, I has always wondered why it was like that.

Heres Kayleigh, she only has the odd shape if she makes a certain face otherwise her face looks fine to me, like I said I was never really concerned about her forhead, ugh. Now I don't know what to think.

[Guest guest]

Hi Angie,

Welcome to the group. Please accept my sympathy for the loss of

Jordan, that must have been an unbelieveably difficult time for

you. Does Kayleigh have flatness or just an odd ridge?

Natasha

Atlanta, GA

--- In Plagiocephaly , " angncmom " <Mjaja25@a...>

wrote:

> Hi my name is Angie and I am new here. I just got the call

yesterday

> that my 4th child Kayleigh whom is 13 months old has mild

> plagiocehaly. I was always concerned about a spot in the back of

her

> head that I actually thought was a closed suture. My first son

Jordan

> had craniosynostosis, and had surgery when he was four months old.

We

> lost him during that surgery due to an allergic reaction to a

blood

> transfusion. So I have always been obsessive about my childrens

heads

> since then. I have repeatbly ask the doctor about this spot in

> Kayleighs head and he has always told me the sutures were open. So

at

> her last check up I ask him again and he said that we should see a

> neurosergeon just to be on the safe side. I was relieved and

scared

> to death at the same time. We had to go for a ct scan last Tuesday

> and they had to put her to sleep. I just got the results back

> yesterday and they told me that all her sutures were open except

her

> metopic suture, but she then told me that that particular suture

is

> the only one that begins to close in infancy so that may be normal

> for Kayleigh. I am scared to death, that wasn't even the spot that

we

> were concerned about. I have been doing research and looking at

> pictures of children with closed metopic sutures and I don't

believe

> that Kayleigh is going to need surgery but I don't want to get my

> hopes up ya know. Her forhead looks great to me. So anyway I

suppose

> the ridge in the back of her head is what they are calling the

mild

> plagiocephaly, I am really nervous about that as well because she

is

> already 13 months old. She has an appointment Tuesday with the

> specialist, I am hoping and praying we get some good news. Anyway

I

> am sorry this is so long, I am glad to have found this support

group,

> when I had my first son I didn't have the internet and I knew no

one

> that was going through the same things. Thanks for reading.

[Guest guest]

Hi Angie,

Welcome to the group. Please accept my sympathy for the loss of

Jordan, that must have been an unbelieveably difficult time for

you. Does Kayleigh have flatness or just an odd ridge?

Natasha

Atlanta, GA

--- In Plagiocephaly , " angncmom " <Mjaja25@a...>

wrote:

> Hi my name is Angie and I am new here. I just got the call

yesterday

> that my 4th child Kayleigh whom is 13 months old has mild

> plagiocehaly. I was always concerned about a spot in the back of

her

> head that I actually thought was a closed suture. My first son

Jordan

> had craniosynostosis, and had surgery when he was four months old.

We

> lost him during that surgery due to an allergic reaction to a

blood

> transfusion. So I have always been obsessive about my childrens

heads

> since then. I have repeatbly ask the doctor about this spot in

> Kayleighs head and he has always told me the sutures were open. So

at

> her last check up I ask him again and he said that we should see a

> neurosergeon just to be on the safe side. I was relieved and

scared

> to death at the same time. We had to go for a ct scan last Tuesday

> and they had to put her to sleep. I just got the results back

> yesterday and they told me that all her sutures were open except

her

> metopic suture, but she then told me that that particular suture

is

> the only one that begins to close in infancy so that may be normal

> for Kayleigh. I am scared to death, that wasn't even the spot that

we

> were concerned about. I have been doing research and looking at

> pictures of children with closed metopic sutures and I don't

believe

> that Kayleigh is going to need surgery but I don't want to get my

> hopes up ya know. Her forhead looks great to me. So anyway I

suppose

> the ridge in the back of her head is what they are calling the

mild

> plagiocephaly, I am really nervous about that as well because she

is

> already 13 months old. She has an appointment Tuesday with the

> specialist, I am hoping and praying we get some good news. Anyway

I

> am sorry this is so long, I am glad to have found this support

group,

> when I had my first son I didn't have the internet and I knew no

one

> that was going through the same things. Thanks for reading.

[Guest guest]

Hi Angie~

I am so sorry for the loss of your son, I could not even begin to

imagine the pain you went through at that time. It is understandable

why you are so scared with Kayleigh.

My son is 14.5 months old and will be getting his helmet next week.

His metitopic suture is very open, as well as his fontanelle, but

some of his other sutures have started to close, which I was told was

completely normal and okay. They were actually very shocked to see

that he metitopic was so open, along with his fontanelle.

I hope all is well with your little sweetie, please keep us posted on

what you find out. I know of another support group for plagio as

well as craniosynostosis where other parents may know the struggles

you have faced with losing your son and parents that may benefit from

your experience. If you are interested, email me and I will send you

the link.

Tina

soon to be helmetted

> Hi my name is Angie and I am new here. I just got the call

yesterday

> that my 4th child Kayleigh whom is 13 months old has mild

> plagiocehaly. I was always concerned about a spot in the back of

her

> head that I actually thought was a closed suture. My first son

Jordan

> had craniosynostosis, and had surgery when he was four months old.

We

> lost him during that surgery due to an allergic reaction to a blood

> transfusion. So I have always been obsessive about my childrens

heads

> since then. I have repeatbly ask the doctor about this spot in

> Kayleighs head and he has always told me the sutures were open. So

at

> her last check up I ask him again and he said that we should see a

> neurosergeon just to be on the safe side. I was relieved and scared

> to death at the same time. We had to go for a ct scan last Tuesday

> and they had to put her to sleep. I just got the results back

> yesterday and they told me that all her sutures were open except

her

> metopic suture, but she then told me that that particular suture is

> the only one that begins to close in infancy so that may be normal

> for Kayleigh. I am scared to death, that wasn't even the spot that

we

> were concerned about. I have been doing research and looking at

> pictures of children with closed metopic sutures and I don't

believe

> that Kayleigh is going to need surgery but I don't want to get my

> hopes up ya know. Her forhead looks great to me. So anyway I

suppose

> the ridge in the back of her head is what they are calling the mild

> plagiocephaly, I am really nervous about that as well because she

is

> already 13 months old. She has an appointment Tuesday with the

> specialist, I am hoping and praying we get some good news. Anyway I

> am sorry this is so long, I am glad to have found this support

group,

> when I had my first son I didn't have the internet and I knew no

one

> that was going through the same things. Thanks for reading.

[Guest guest]

Hi Angie~

I am so sorry for the loss of your son, I could not even begin to

imagine the pain you went through at that time. It is understandable

why you are so scared with Kayleigh.

My son is 14.5 months old and will be getting his helmet next week.

His metitopic suture is very open, as well as his fontanelle, but

some of his other sutures have started to close, which I was told was

completely normal and okay. They were actually very shocked to see

that he metitopic was so open, along with his fontanelle.

I hope all is well with your little sweetie, please keep us posted on

what you find out. I know of another support group for plagio as

well as craniosynostosis where other parents may know the struggles

you have faced with losing your son and parents that may benefit from

your experience. If you are interested, email me and I will send you

the link.

Tina

soon to be helmetted

> Hi my name is Angie and I am new here. I just got the call

yesterday

> that my 4th child Kayleigh whom is 13 months old has mild

> plagiocehaly. I was always concerned about a spot in the back of

her

> head that I actually thought was a closed suture. My first son

Jordan

> had craniosynostosis, and had surgery when he was four months old.

We

> lost him during that surgery due to an allergic reaction to a blood

> transfusion. So I have always been obsessive about my childrens

heads

> since then. I have repeatbly ask the doctor about this spot in

> Kayleighs head and he has always told me the sutures were open. So

at

> her last check up I ask him again and he said that we should see a

> neurosergeon just to be on the safe side. I was relieved and scared

> to death at the same time. We had to go for a ct scan last Tuesday

> and they had to put her to sleep. I just got the results back

> yesterday and they told me that all her sutures were open except

her

> metopic suture, but she then told me that that particular suture is

> the only one that begins to close in infancy so that may be normal

> for Kayleigh. I am scared to death, that wasn't even the spot that

we

> were concerned about. I have been doing research and looking at

> pictures of children with closed metopic sutures and I don't

believe

> that Kayleigh is going to need surgery but I don't want to get my

> hopes up ya know. Her forhead looks great to me. So anyway I

suppose

> the ridge in the back of her head is what they are calling the mild

> plagiocephaly, I am really nervous about that as well because she

is

> already 13 months old. She has an appointment Tuesday with the

> specialist, I am hoping and praying we get some good news. Anyway I

> am sorry this is so long, I am glad to have found this support

group,

> when I had my first son I didn't have the internet and I knew no

one

> that was going through the same things. Thanks for reading.

[Guest guest]

>>Is it necessary to go on

> a specific diet if you're doing enzymes?

Depends on the enzymes and on your child's specific issues. My kids

still needed a few foods removed, even with HNI enzymes, but not the

typical foods and not a specific " diet " .

>>He has placed him on the

> Page diet, Phase II. From what I can tell it is a diet that does

> not allow any grains.

Sounds like similar to SCD

http://www.pecanbread.com/

http://www.scdiet.org/

>>All I want is

> to get him completely better. Am I being unrealistic or is this

> something we're going to be dealing with all of our lives?

One of my kids had SID issues. Those issues are gone now, but it did

take quite a bit of supplementation, especially for yeast overgrowth

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

Dana