New to Group

[Guest guest]

Hello

I am sorry to hear about your daughters diagnosis. My son, , was

diagnosed 3 years ago this March, when he was 23 years old. These are rough and

scary times for you all and I hope the Gleevec does its job quickly - apart from

being good - those counts coming down really helps us parents sleep better!

was at 176 000 when diagnosed and his counts did go up slightly in the

first days until the Gleevec and the Allopurinol kicked in. He was really tired

for the first year on Gleevec, but seems to have learned how to cope with it

now. He is getting married in May and has just bought a house - this makes my

heart sing after some really scary years.

When reading info on cml, make sure you look at the date - there is plenty old

stuff out there that still makes me want to throw up - but the new info gives a

much more hope-filled outlook.

If there is anything I can help you with, just yell. This is one awesome group

of people you have found... I wish your daughter the very best of responses to

her meds.

love and light to you all

Annie

's mom

http://livingwithcml.blogspot.com

>

> Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter was

diagnosed with Leukemia, and the definitive diagnoses came today and it is CML.

They are going to start her on Gleevic, today I think. After some browsing

there is an overwhelming amount of information out there and lots of it good to

read and lots of it also scary to read. So I will start simple. It looks like

PCRU is something good, with that said, what is PCRU.

>

> Thank you,

>

>

[Guest guest]

Hi ,

My son is in the same boat as your daughter. He is 13 weeks old and will be getting fitted with his DOC band next Thursday. Are you using CT in NJ?

So far in all my research here in this group, online and from the Mommies at CT, the babies all adjust to the band better than the parents. There may be initial adjustment issues with sleeping, but babies are very adaptable. I have found the biggest complaint is dealing with the insurance companies for reimbursement. I will be addressing that in the coming weeks and I'm just hoping for the best.

I hope everything goes well with you and your little girl.

From: lesrod76 <lesrod76@...>Subject: New to GroupPlagiocephaly Date: Friday, May 1, 2009, 9:25 PM

Hi everyone. My daughter is 3 1/2 months old and she had her first appointment with Cranial Technologies today for a DOC band. We are moving forward with the process, but I am wondering what advice other veterans have for this process and if there are pitfalls that I should be aware of and watching for. Thanks for any help,

[Guest guest]

Hi Kara, My son received his STARband a little over 5 weeks ago. The orthotist

took some manual measurements, photos and then placed him in the Star scanner.

That's where the fun part begins:) The scan should only take a couple of

seconds, but your baby has to be completely still for an accurate scan. It

seems some babies can do this, but most scream and cry so it may take a long

time. Bring some of 's favorite toys if you need to distract her.

They place a white skull cap on her head and some stickers by her ears to

measure her ear offset before they put her in the scanner...it's all really

painless, but it can be stressful if your child doesn't like being in the

scanner.

Our band came within 10 working days...I've heard it can take up to 2 weeks.

I think you will have a lot of success at 7 months. The hardest part for me was

waiting to start the helmet.

Good luck!

Mom to Luke, 6 months, 1 week old

severe brachy, mild plagio

5 weeks 3 days in STARband

NYC

>

> Hi,

>

> My name is Kara and my daughter is 7 months old. We are going tomorrow

to have her fitted for a Starband.

>

> We started noticing a flattening in the back of her head around 3 months. We

saw a Neurosurgeon at 4.5 months who said it was cosmetic. We kept her off her

back as much as possible although she only sleeps on her back. She was able to

sit on her own by 5 months but has not learned to roll as of yet. We propped her

on her side until she pulled the prop out and started to play peek-a-boo with

it. At her 6 month well visit the pediatrician was not happy with the way her

head looked so we went back to the Neuro who pretty much laughed that we were

back. He again said it was cosmetic and mild and her hair will cover it. I

wanted a second opinion so I saw another Neuro on Friday and she said she was a

severe case a 9 out of 10. So here we are...

> I'm pretty frustrated since I tried to be pro-active and start the process at

4.5 months and now she is over 7 months old.

>

> Will we have as much success at this age?

> Has anyone used Cranial Remolding in town, NJ?

> What can I expect at the appointment tomorrow? I know that they will be doing

a scan.

> How quickly does the helmet come in?

>

> Thanks for all your help!

>

> Kara

>

[Guest guest]

It certainly sounds as if Dr. G could help your son. The diet he is currently on

seems close to the diet with the exception of almonds, berries, and

tropical fruits. Not sure about honey; none of mine like it, so I never thought

to ask.

My now eight year old son has been on Dr. G's protocol over a year now and we've

seen great progress, especially in the area of his general health. Noah had a

condition called cyclical vomiting syndrome, where he would vomit for a week out

of every month. These episodes were preceded and followed by migraine headaches.

He also had a seizure disorder. Four months into antiviral treatment, the

cyclical vomiting stopped. He still got the migraines for another few months,

but they were reduced in frequency and severity. We've also been able to reduce

his seizure meds with no adverse effects. My oldest son, also on the protocol,

is completely off seizure meds.

I believe there's a clinic in NY that does the protocol and a Dr.

in TX also does it. Hopefully, someone who knows more about their contact

information will chime in.

All the best,

Robyn

> From: kittycat32707 <slkbrooke@...>

> Subject: New to Group

>

> Date: Monday, May 18, 2009, 4:59 PM

> I just joined this group and wondered if my son would be a

> good candidate for Dr. Goldberg. He's 14 yo. and has

> severe G.I. disease as well as sensory integration and

> immune dysfunction. We had his viral titers tested in 2007

> and his HHV-6 was 1:640 with positive being 1:160. He is

> currently taking anti inflammatories for his G.I. disease

> and also steroids for another month because he had a flare

> up and had to be put back into remission. He is on a

> medically restricted diet and can only eat meat, veggies,

> fruits as well as limited amount of almonds, eggs and honey.

> My son does not tolerate any multivitamins (dark circles

> and behavioral decline) but takes each vitamin and mineral

> separately. He is also getting methyl B12 shots. My

> understanding is that Dr. Goldberg is very particular about

> supplements, diet, and other medications. I am not very

> familiar with the NIDs diet but do you think that the diet

> my son's G.I. has him on would be acceptable as well as

> anti inflammatory medication and the supplements we have him

> on? I live outside of Orlando. Are there doctors that

> practice Dr. Goldberg's protocol in other parts of the

> country?

> Thank you for any help you can give,

> Sharon

[Guest guest]

Dr. G would not use the steroids...I would stop the b 12,  and definately look

into .

look at Dr. Goldbergs website, The vitamins and minerals could be making him

worse yet.

Dr. G doesn't allow strawberries, or any kind of berry.  No Dairy, wheat is

okay, as long as it is not whole grain. 

 

HTH,

 Sincerely Noel

From: kittycat32707 <slkbrooke@...>

Subject: New to Group

Date: Monday, May 18, 2009, 4:59 PM

I just joined this group and wondered if my son would be a good candidate for

Dr. Goldberg. He's 14 yo. and has severe G.I. disease as well as sensory

integration and immune dysfunction. We had his viral titers tested in 2007 and

his HHV-6 was 1:640 with positive being 1:160. He is currently taking anti

inflammatories for his G.I. disease and also steroids for another month because

he had a flare up and had to be put back into remission. He is on a medically

restricted diet and can only eat meat, veggies, fruits as well as limited amount

of almonds, eggs and honey. My son does not tolerate any multivitamins (dark

circles and behavioral decline) but takes each vitamin and mineral separately.

He is also getting methyl B12 shots. My understanding is that Dr. Goldberg is

very particular about supplements, diet, and other medications. I am not very

familiar with the NIDs diet but do you think that the diet my son's G.I. has him

on would be acceptable as well

as anti inflammatory medication and the supplements we have him on? I live

outside of Orlando. Are there doctors that practice Dr. Goldberg's protocol in

other parts of the country?

Thank you for any help you can give,

Sharon

[Guest guest]

Hi ...I was just recently diagnosed with RA. I've had a flareup since

January...I've been on Meloxicam and Methacarbamol. None of these are

helping...but doctor won't treat me with nothing else. My depression is so bad I

don't want to participate in much lately...I'm 45 & still have 2 lil ones (6 &

10) to raise...I don't now how to deal with anything these days. I don't know if

I even want to go on...I too feel that my family gets fed up with hearing my

woes...but if I don't speak out, they think I'm good and depend on me more than

I can handle. My kids keep me going

ita

>

> Hello everyone. I wanted to introduce myself. My name is and I live

just outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a

year ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

>

>

[Guest guest]

Welcome ,

I'm sorry for your diagnosis, but you have come to the right place for support

and great information. We all need the extra support, because its hard for

famiy and friends to understand, when they have no idea what we go through.

I know how you feel about family getting tired of hearing it, heck I get tired

of myself. I get my feelings hurt quite a bit, but hey, not much I can do. All

I can do, is just live my life the best I can, and if someone can't deal with

it, there's the door. I know its hard, we might be tough dealing with this

dreadful disease, but we still have a heart. Life sucks sometimes, and having

RA, and all the other little diseases with it, REALLY sucks.

You will find great people here, promise. I have been with the group for quite

awhile. Everyone is very dear to me here. You stay awhile, and if you need

someone to talk to, email me anytime.

You've got a friend,

Tawny (OK)

>

> Hello everyone. I wanted to introduce myself. My name is and I live

just outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a

year ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

>

>

[Guest guest]

ita,

I'm sorry you've been in a flare for so long. I deal with flares quite a bit. I

usually have to get a steroid shot at the rheumy's office, or she will put me on

a burst of prednisone for a short time.

I hope you get some answers here and then talk to your doctor, find a solution

that will help you quickly. If your not happy with your doc, it might be in

your best interest to find a new doctor.

Good luck,

Tawny

> >

> > Hello everyone. I wanted to introduce myself. My name is and I live

just outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a

year ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

> >

> >

>

[Guest guest]

Hi...

Welcome to the Group. Understanding what the books say is one thing,

understanding what we go through is another. There's a lot of information,

understanding, and support in this Group. We have a lot of well balanced,

rational people here, at least that's what , my sock monkey, tells me.

Stan

Seattle, very Rainy.

Hello everyone. I wanted to introduce myself. My name is and I live just

outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a year

ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

[Guest guest]

Hi

 

In reading your first paragraph it reminds me of our son.  Have you had her checked for Torticollis?? Our son had that and that is what caused his head to go flat, he also only looked left, slept left and preferred his left side.  Now after almost 3 months of PT he loves  his right side too!!! I guess he never knew it was there!! He still does sleep with his head to the left but now I think its out of habit.  We are getting a DOC band on the June 1st, going for the scan this week.

If she has tort or signs of it you will want to start the stretching ASAP, we were lucky to catch it early and its a mild case and he has made a HUGE improvement.  Next is the helmet and then he will be set!!

 

On 5/19/09, rachelmollen <rachelmollen@...> wrote:

Hi everyone -- I am new to the group and would love to hear about your experiences. My daughter Sadie will soon be wearing the helmet that Orthomerica makes. At about 3 months old we started to notice that she always slept on her back with her head turned to the left side. At this age she started to suck her left thumb (only her left thumb!) and preferred that left side. Our pediatrician seemed to think nothing of it, but referred us to a specialist because I was so concerned. After hearing about aggressive repositioning, we did the best we could for a few months. Although she still slept in the same position, I kept her upright and off of her back all day. We did notice an improvement, but it was not dramatic. Here we are now with a 9 month old, just about to start the helmet. She has the flat spot on the left side, as well as a bulging forehead and cheek. I feel so guilty that we didn't act earlier -- I really wanted to avoid the helmet.

After the appointment with the orthotist this past week, I am so encouraged. She thinks we still have a lot of time, and the helmet will only help Sadie's little head. I would love to hear about life in the helmet. What will the adjustment be like for Sadie? She is a content and playful little baby -- I don't want that to change! And what is required in caring for the helmet? And Sadie's head -- she has a lot of hair; should it be trimmed? I worry so much about her being too hot since summer will soon be starting. My other concern is that I have two older daughters, 4 and 6, and I am not sure how or if it will affect them. I don't want them to worry about their little sister.

I am so sorry for rambling. This is the first time that I have written about Sadie's plagiocephaly. I can already see that this group will be so helpful -- just writing this e-mail has been therapeutic!

Pittsburgh, PA

[Guest guest]

Welcome to the group, . You've come to the right place. We all are

walking in the same shoes. I am so grateful for all of the friendships, support

and information I have found in this group. There are some very awesome people

here. Best of luck to you.....Doreen

Hello everyone. I wanted to introduce myself. My name is and I live just

outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a year

ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

[Guest guest]

Hi ita - I'm sorry to hear you are struggling so much. Have you seen a

Rheumatologist yet? If this is a Rheumy that won't treat you with anything else,

then you need to find a new one. Depression is common with this disease. Ask

your PC for something for that. I take Celexa 20mg - my PC told me he's seen

less side effects with this compared to other anti-depressants. Please don't

give up. You just haven't found the right combo of meds yet and possible not the

right doctor either.

Hang in there.....Doreen

Hi ...I was just recently diagnosed with RA. I've had a flareup since

January...I've been on Meloxicam and Methacarbamol. None of these are

helping...but doctor won't treat me with nothing else. My depression is so bad I

don't want to participate in much lately...I'm 45 & still have 2 lil ones (6 &

10) to raise...I don't now how to deal with anything these days. I don't know if

I even want to go on...I too feel that my family gets fed up with hearing my

woes...but if I don't speak out, they think I'm good and depend on me more than

I can handle. My kids keep me going.

ita

[Guest guest]

Hello ita. Have you been to see a Rheumatologist? When my PCP suspected that

I had RA he prescribed Meloxicam for me until I could get to the Rheumatologist.

Once I got to the Rheumy, he took me off the Meloxicam and put me on

Methotrexate and darvocet.

I totally understand the problems with coping. Right before I started on Humira

I had depression and even thought of driving my truck off the road. When I told

this to my PCP he gave me Cymbalta. It has helped, even though I feel down many

days.

Hang in there! I hope that your flare stops for a while!

________________________________

From: juanita <javismommy@...>

Sent: Tuesday, May 19, 2009 9:55:51 PM

Subject: [ ] Re: New to Group

Hi ...I was just recently diagnosed with RA. I've had a flareup since

January...I' ve been on Meloxicam and Methacarbamol. None of these are

helping...but doctor won't treat me with nothing else. My depression is so bad I

don't want to participate in much lately...I'm 45 & still have 2 lil ones (6 &

10) to raise...I don't now how to deal with anything these days. I don't know if

I even want to go on...I too feel that my family gets fed up with hearing my

woes...but if I don't speak out, they think I'm good and depend on me more than

I can handle. My kids keep me going

ita

>

> Hello everyone. I wanted to introduce myself. My name is and I live

just outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a

year ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

>

>

[Guest guest]

Thanks Tawny for the warm welcome! You are right, RA SUCKS!

I try to just focus on the day to day, and when I have a good day, try to enjoy

it the best I can.

I look forward to the continued support from the group.

I was very surprised at the number of welcomes I received from other members.

Have a good day!

________________________________

From: tdianaok <tdianaok@...>

Sent: Tuesday, May 19, 2009 11:11:00 PM

Subject: [ ] Re: New to Group

Welcome ,

I'm sorry for your diagnosis, but you have come to the right place for support

and great information. We all need the extra support, because its hard for famiy

and friends to understand, when they have no idea what we go through.

I know how you feel about family getting tired of hearing it, heck I get tired

of myself. I get my feelings hurt quite a bit, but hey, not much I can do. All I

can do, is just live my life the best I can, and if someone can't deal with it,

there's the door. I know its hard, we might be tough dealing with this dreadful

disease, but we still have a heart. Life sucks sometimes, and having RA, and all

the other little diseases with it, REALLY sucks.

You will find great people here, promise. I have been with the group for quite

awhile. Everyone is very dear to me here. You stay awhile, and if you need

someone to talk to, email me anytime.

You've got a friend,

Tawny (OK)

>

> Hello everyone. I wanted to introduce myself. My name is and I live

just outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a

year ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

>

>

[Guest guest]

Thanks Stan.

You are right about the books. They only tell you the " clinical " side of the

disease.

There is no instructions on how to manage the day to day life you must carry

out!

Anyway, thank you for the warm welcome. I look forward to sharing and learning

from everyone in the group.

Sunny and 75 in Memphis, TN!

________________________________

From: " stanpfister@... " <stanpfister@...>

Sent: Wednesday, May 20, 2009 1:50:06 AM

Subject: Re: [ ] New to Group

Hi...

Welcome to the Group. Understanding what the books say is one thing,

understanding what we go through is another. There's a lot of information,

understanding, and support in this Group. We have a lot of well balanced,

rational people here, at least that's what , my sock monkey, tells me.

Stan

Seattle, very Rainy.

Hello everyone. I wanted to introduce myself. My name is and I live just

outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a year

ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

[Guest guest]

Thank you Doreen!

I have already received the warmest welcomes from the group.

I look forward to sharing and learning from everyone.

________________________________

From: Mimi <mimi212@...>

Sent: Wednesday, May 20, 2009 8:52:48 AM

Subject: [ ] Re: New to Group

Welcome to the group, . You've come to the right place. We all are walking

in the same shoes. I am so grateful for all of the friendships, support and

information I have found in this group. There are some very awesome people here.

Best of luck to you.....Doreen

Hello everyone. I wanted to introduce myself. My name is and I live just

outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a year

ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

[Guest guest]

Wow Kris, I cannot imagine what you are going through with fibro and lupus on

top of RA.

What kind of doctor do you go to for Lupus and Fibro?

Thank you for the warm welcome. Take Care.

________________________________

From: Kris Allan <aradiamoon2006@...>

Sent: Wednesday, May 20, 2009 9:38:54 AM

Subject: [ ] New to group

Welcome , my name is Kris and i have RA as well as Lupus and fibro, my

doctor now tells me (rhuemy) that it is the fibromyalgia that is kicking my ass

and he doesn't specialize in that so i need to find another one. more paperwork.

As for meds, my body doesn't respond to any of that stuff, i may try Lyrica

currently i am on 80mg a day of methadone for the intense pain. Keep us posted

on how your doing.

Kris

[Guest guest]

Welcome Kris,

I'm sorry your having fibro pain. Can you get help from your GP doctor?

I hope you get some help and relief very soon.

Gentle hugs,

Tawny

--- In , Kris Allan <aradiamoon2006@...>

wrote:

>

> Welcome , my name is Kris and i have RA as well as Lupus and

fibro, my doctor now tells me (rhuemy) that it is the fibromyalgia that

is kicking my ass and he doesn't specialize in that so i need to find

another one. more paperwork. As for meds, my body doesn't respond to any

of that stuff, i may try Lyrica currently i am on 80mg a day of

methadone for the intense pain. Keep us posted on how your doing.

> Kris

>

>

>

>

>

>

>

[Guest guest]

Welcome ,  Same state but about 3 hours away outside of Nashville.  linda

From: thestitchartist <angela@...>

Subject: [ ] New to Group

Date: Tuesday, May 19, 2009, 8:09 PM

Hello everyone. I wanted to introduce myself. My name is and I live just

outside of Memphis, TN. I am 40 years old and was diagnosed with RA about a year

ago. The books that I have read have given me much information about the

disease, treatments, and ups and downs. However, it is hard to find support from

those who truly understand. This is why I have joined this group. I know my

family gets tired of hearing my woes from day to day. I currently take several

meds including a biologic, methotrexate, and prednisone. All of these have

terrible side effects as you all probably know. Anyway, I am hoping to share,

vent and learn from everyone here in the group. Is there anyone here from Atoka

TN (or Memphis)?

[Guest guest]

Nice to meet you . This group rocks!

Take Care,

(musiclvr3237) - Michigan

>

>

> From: thestitchartist angela@...

> Subject: [ ] New to Group

>

> Date: Tuesday, May 19, 2009, 8:09 PM

>

>

>

>

>

>

>

>

> Hello everyone. I wanted to introduce myself. My name is and I

live just outside of Memphis, TN. I am 40 years old and was diagnosed

with RA about a year ago. The books that I have read have given me much

information about the disease, treatments, and ups and downs. However,

it is hard to find support from those who truly understand. This is why

I have joined this group. I know my family gets tired of hearing my woes

from day to day. I currently take several meds including a biologic,

methotrexate, and prednisone. All of these have terrible side effects as

you all probably know. Anyway, I am hoping to share, vent and learn from

everyone here in the group. Is there anyone here from Atoka TN (or

Memphis)?

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi -

Welcome to the board. It really sounds like you did all you could as early as

you could with repositioning, some babies just don't respond to it as well as

you'd hope. Nine months is not too late to get some great improvement.

My son had a full head of curly hair and I did get it cut right before he got

his first band. He did sweat a lot at first, but eventually his body adjusted

and it got a lot better. Just dress her really lightly, onesies and no socks

basically. The STARBand (that Orthomerica makes) has a long break in period, it

takes a week to progress to wearing it 23 hours a day. So hopefully that will be

to your advantage. My son's personality didn't change at all with the band,

although some babies don't adjust as well to sleeping in the helmet (which

probably makes them crankier during waking hours). But I do think it's easier

for older babies to adjust to sleeping in it because they are able to roll over

on their own and find a comfortable position, at least that was our experience.

You'll get some funny looks, but just try to have a quick and easy response

ready at hand when curious strangers ask questions.

As far as the older siblings go, my daughter was 4 when my son got his band and

we just explained to her that he was getting a special helmet to help make his

head more round. I suggested that she wear her bike helmet to help support her

baby brother and she loved that idea (and didn't feel " left out " ). A few days at

the beginning of treatment, she wore her bike helmet all day, out on errands and

everything. I'm sure we got even funnier looks on those days! And she also went

to every helmet appointment with us, so was involved in the whole process. And

after a while, she got used to it, just like we did, and it was almost a

non-issue.

Hope the adjustment goes well! Good luck!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

P.S. I am from Pittsburgh! Live in Raleigh, NC now though.

>

> Hi everyone --

> I am new to the group and would love to hear about your experiences. My

daughter Sadie will soon be wearing the helmet that Orthomerica makes. At about

3 months old we started to notice that she always slept on her back with her

head turned to the left side. At this age she started to suck her left thumb

(only her left thumb!) and preferred that left side. Our pediatrician seemed to

think nothing of it, but referred us to a specialist because I was so concerned.

After hearing about aggressive repositioning, we did the best we could for a few

months. Although she still slept in the same position, I kept her upright and

off of her back all day. We did notice an improvement, but it was not dramatic.

Here we are now with a 9 month old, just about to start the helmet. She has the

flat spot on the left side, as well as a bulging forehead and cheek. I feel so

guilty that we didn't act earlier -- I really wanted to avoid the helmet.

> After the appointment with the orthotist this past week, I am so encouraged.

She thinks we still have a lot of time, and the helmet will only help Sadie's

little head. I would love to hear about life in the helmet. What will the

adjustment be like for Sadie? She is a content and playful little baby -- I

don't want that to change! And what is required in caring for the helmet? And

Sadie's head -- she has a lot of hair; should it be trimmed? I worry so much

about her being too hot since summer will soon be starting. My other concern is

that I have two older daughters, 4 and 6, and I am not sure how or if it will

affect them. I don't want them to worry about their little sister.

> I am so sorry for rambling. This is the first time that I have written about

Sadie's plagiocephaly. I can already see that this group will be so helpful --

just writing this

> e-mail has been therapeutic!

>

>

> Pittsburgh, PA

>

[Guest guest]

OKD,

 

Welcome to the group! Sorry for the dx of RA.

 

Having said that, this group is a wonderful wealth of information, comfort and

understanding with some humor thrown in. They have become invaluable to me since

my dx in October of last year. I lurk more than I post, but each person is

different.

 

Betsy

[Guest guest]

Hi Peg...    I just wanted to Welcome You to this Group!  I am very sorry to

hear of Your Health troubles and sorry that Your husband was laid off - of his

job.

        I'm in my upper 50's; was diagnosed with R.A. - several yrs. ago and

have bipolar disorder, also (20 + years now).  Times have been very hard.  I'm

so sorry to hear that You're in a Wheel Chair.   I Pray for You!  May God Bless

You!   Hope you enjoy this Group as much as I have;  I'm fairly New to this

group, also.   Judy in GA. / USA.

From: Peg Parson <momsalittleoff@...>

Subject: [ ] New to group

Date: Tuesday, June 9, 2009, 10:25 PM

I was just diagnosed with fibromyalgia today, so I'm still trying to

learn more about it. I also have osteoarthritis of the spine and in some of my

other joints.

I am 50 and have 2 adult aged children. I stopped working about 10 years ago so

I could homeschool my autistic son and started having chronic pain problems

about 5 years ago. By the time my son was able to do his own schooling (through

a charter homeschool) I was already in a wheelchair. After two back surgeries,

three series of epidural shots and having tried just about every pain medication

on the planet, it became apparent that I wouldn't be going back into the work

force. A real problem since my husband was layed off and is unemployed now. So

now I'm considering a fourth stab at getting social security disability.

I love to knit, sew, crochet, and play computer games (World of Warcraft and

Sims are my favorites). I live in Southern California and just celebrated my

30th anniversary with my very supportive husband, Randy. We have 2 very

hilarious cats and a dog that my doctor officially designated an emotional

support dog.

I look forward to meeting everyone and making some new friends.

Hugs,

Peg

[Guest guest]

Hi Peg - welcome to the group. I'm 48 and have two children (30, 16). I am sorry

you are having to deal with so much pain. We all certainly can sympathize with

you. SSD is a PITA to say the least, but you have to stick with it until the

end. I was denied twice before I finally got a hearing date (2 years in the

waiting). Now I pray they find favorably for me as I just don't know what I'd do

if I were denied again. I have RA and FM, so I know how you feel.

I wish you all the luck in the world in your quest to finding pain freedom. Keep

us posted. We all care.....Doreen

I was just diagnosed with fibromyalgia today, so I'm still trying to learn

more about it. I also have osteoarthritis of the spine and in some of my other

joints.

I am 50 and have 2 adult aged children. I stopped working about 10 years ago so

I could homeschool my autistic son and started having chronic pain problems

about 5 years ago. By the time my son was able to do his own schooling (through

a charter homeschool) I was already in a wheelchair. After two back surgeries,

three series of epidural shots and having tried just about every pain medication

on the planet, it became apparent that I wouldn't be going back into the work

force. A real problem since my husband was layed off and is unemployed now. So

now I'm considering a fourth stab at getting social security disability.

I love to knit, sew, crochet, and play computer games (World of Warcraft and

Sims are my favorites). I live in Southern California and just celebrated my

30th anniversary with my very supportive husband, Randy. We have 2 very

hilarious cats and a dog that my doctor officially designated an emotional

support dog.

I look forward to meeting everyone and making some new friends.

Hugs,

Peg

[Guest guest]

Run from that Dan. Sorry, anyone should not give you probiotics or enzymes with

your allergies in them. Pretty basic and scary. There are plenty of other

products out there.

Stop the probiotics. JMO.

Tammy

New to Group

Hello Everyone,

I have been reading up the last couple of days on all the valuable info in

this group. My son is 2 1/2 years old and has a condition called eosinphillic

esophagitis and severe food allergies and can only tolerate 4 foods(pears,

squash, rice and olive oil) and drinks a hypoallergic formula (vanilla elecare).

He also has some quirky beahviors(poor eye contact,hyperactive, repeats things

multiple times). He has had these issues pretty much since the 3 months of age.

I am pretty new to all this, but just looking at alternatives to help him grow.

I have read a lot interesting info here about metals, yeast and parasites.

We recently went to a DAN dr here in northern VA. The DAN dr didn't do any

test except for the muscle testing. She put him on pleo fort, similase jr, and

metagenic df probiotic. He has been doing ok with the pleo fort, similase jr(a

little reflux). We started the probiotic and he seemed to be doing ok and he we

noticed a single hive on his face. Could that be due the " die-off " or a reaction

to the probiotic? The probiotic is cultured on soy and diary which he has an ige

allergy to both. We have seen a hive before from another probiotic in past which

was not cultured on dairy. We got scared at that time and stopped.

Also, Are there any recommended books to learn more about all this

information?

Thanks for any insight!

Aqil