New Member

Posted March 10, 2007 · March 10, 2007

hi,

i just read your e-mail, so i may tell you things that you already know. go to

www.rheumatic.org, make a print of freq. asked questions, take it to your doctor

and request the treatment. good luck

anna

rheumatic New Member

Hi everyone,

I'm 15 years old from the uk, and suffered from RA since many years

now, I have been in hospitals several times without any improvement of

my situation and without any doctor actually doing anything, I'm not

any under medication for my condition because I'm " to young " apart from

codeine which I stopped taking

Constantly I have inflammation of different joints, and for the last

few months I suffer from cramps and muscle spasms, tingling, stinging

and pulsing all over my body and my head

Lately I also have frequent strong headaches and it feels like my upper

head is puling together which usually lasts only a few seconds each

time which I have a few times a day and it starts to become really

irritating! On top of that I cant eat anything cause I have something

wrong with my oesophagus with extreme cramps and pain while swallowing

and a feeling of choking, which is undiagnosed till so far (having to

wait another month for an appointment with an specialist)

Since none of my doctors really seem to care is there anything I can do?

Posted March 10, 2007 · March 10, 2007

Hi Marci,

Welcome to our group! Sure you have been around kids with AS before - your own

son! He's the same kid he was before, now you just have a name for his

problems. Feel free to join in whenever you like!

Roxanna

( ) New Member

Hi. I am a new member to this. I was actually introduced to this by

another parent here in Illinois to help me out. My name is Marcy. I

am 29yrs with two boys. My oldest is 8 and his name is and my

youngest is 6 and his name is . just recently got

diagnosis with AS and to be honest with you all. Most days it is very

hard for me because i have never been around kids with AS. I dont have

anyone to talk to because none of either family has any kids with the

problems that I do.

Thanks,

Marcy

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Posted March 11, 2007 · March 11, 2007

Hi ,

I completely understand the relief of finding out that you might

fit a diagnosis. There have been a couple of times when I was

THRILLED to be given a name for a condition, and PA was the major

one. Of course, I sometimes had friends or family who thought I

seemed to be " wanting " to be sick. I told them I was ALREADY sick!

I just wanted the owners manual for the condition :-)

I hope your dr offers some answers. Are you going to a

Rheumatologist?

DJ

>

> hello

> i am a 32 year old mother of 4...have psoriasis, not badly, but

enough that

> it breaks out in the dry winter months or when i am stressed...i

have had

> much pain, ache in the very last joints of my ring and middle

fingers, wrist

> aches, elbows, knees, ankles and back....i have been put on

naproxen...i was

> told i had arthritis in my right knee years ago at an er visit,

swollen warm

> achy....i was convinced it was rhuematoid but my blood work came

back

> normal...i have been doing much research online and am surprised to

learn

> that the signs and symptoms of ra and pa are alike! i feel almost

relieved

> to see that there is something that matches my symptoms!! i also

suffer from

> pcos, high blood pressure, and depression....

> any advice? comments on making diagnosis? my next dr appt is next

week.

> thank you

> karen

>

Posted March 11, 2007 · March 11, 2007

Welcome, . At your appointment next week, ask for a referral to

a rheumatologist. That's who will diagnose the PA. You need to

establish a relationship with a rheumy now so that you will not have

to wait for months to get in should you have a major flare. The

naproxen should help alleviate some or most of the pain and

inflammation, but will do nothing to prevent potential damage to your

joints. A rheumy will decide if/when you need to go on stronger meds

that will actually stop the disease progression.

When you see the rheumy, be sure not to downplay the symptoms and

pain you've had. If you've had any tendonitis, that is important to

discuss as well - it's another part of PA. If you're having sleep

difficulties, tell about that. If you have depression, be sure

to 'fess up to that, too. Any swelling, especially of fingers and

toes, any redness with pain. Even chest pain or rib pain can be

related to PA. Also pain in the jaw, which often goes misdiagnosed

as TMJ. Any problems, now or in the past, with you fingernails or

toenails - even if it might have been misdiagnosed as athlete's

foot. If you've had itchy eyes, that can be inflammatory

conjunctivitis caused by PA. If you've had blurry vision, it can be

PA. There's no point in being stoic towards our doctors - they need

to know the truth in order to help us best.

It's normal for a person with PA to have a negative RA factor - isn't

it a shame that the doctors don't know enough to ask about P and

other signs of PA when they see signs of arthritis in a younger

person but a negative blood test? Be sure, if you do turn out to

have PA, to go back to every doctor that saw you and help educate

them about PA and what they could have discovered earlier if they'd

known how to recognize it.

Feel free to aks any questions or air any concerns here. Everyone

knows exactly what you're going through and can offer much support

and information.

best regards,

sherry z

>

> hello

> i am a 32 year old mother of 4...have psoriasis, not badly, but

enough that

> it breaks out in the dry winter months or when i am stressed...i

have had

> much pain, ache in the very last joints of my ring and middle

fingers, wrist

> aches, elbows, knees, ankles and back....i have been put on

naproxen...i was

> told i had arthritis in my right knee years ago at an er visit,

swollen warm

> achy....i was convinced it was rhuematoid but my blood work came

back

> normal...i have been doing much research online and am surprised to

learn

> that the signs and symptoms of ra and pa are alike! i feel almost

relieved

> to see that there is something that matches my symptoms!! i also

suffer from

> pcos, high blood pressure, and depression....

> any advice? comments on making diagnosis? my next dr appt is next

week.

> thank you

> karen

>

Posted March 11, 2007 · March 11, 2007

Good afternoon ,

Welcome to the group! I know that you will find much information to help you

along the way. I was just like you a year ago or so. I would wake up one

morning and be fine, and then in a day or two I might would wake up and my knee

would hurt like crazy and be totally swollen and hot to touch. It was weird I

thought. I would go to the Dr and they did all the test and they came back

normal. She tested for Ra, Lupus, and everything came back normal. I was

beginning to think that this was all in my head or something. It happend again

where the top of my hand was swollen, red and hot to touch. I had to walk

around and hold my left hand with my right hand because it hurt to bad for it to

not be supported. Well I went to the Dr. again and she said that she thought it

was courpal tunnell (sp) I told her that I really didn't think that that was

what it was. She sent me for xrays and it just showed that there was flluid and

inflamation. Duh! I could have told her that,

right? Well last April it did it again except this time it was in my ankle. It

hurt so bad that I could not walk on it. I crawled around the house to get from

point A to point B. My husband took off work to get me to the Dr and they had to

come and get me in a wheel chair to get me in there. That time it scared me.

It was so bad that while laying in the bed at night I could NOT lay my leg down.

There could be no pressure at all applied to that ankle. She gave me a

cortorzone shot and I could tell that afternoon that it was better. She finally

got me in to the Rummy... ONE MONTH LATER!! We don't have many in the city of

Louisville so it has to be a totally referral from your primary card Dr. before

they will see you. So by the time I got there which was May 15th of last year I

walked in there fine that day no problems at all. I explained everything to her

they too did blood work. Then Bingo!!! She noticed the Psoriasis on my elbow

and on my ring finger and she said

how low have you had this? I said for a long time I have tried everything to

get rid of it. She told me that I have Psoriatic Arthritis. I honestly was

glad that I had an answer to my problem. I need to learn more about it. I

really do. She would like for me to start with Humira, or Remicade. I am only

taking the naproxen for now. I told her that when I get like I was and she can

see me at my worst we will discuss it then. MY problem is they are in a big

city and on the 10th floor. Not to mention that we have to park in a parking

garage. I told here that if I ever get that bad again they will have to come

and get me in a wheel chair. She said that they will get me in.

My oldest son is getting married in June and I pray to God that I will stay

calm and be able to walk down that aile. I notice that stress triggers it. So

stay cool...

Don't worry Be Happy!!!

Blessing,

Tammy

Russ and <russ.karen@...> wrote:

hello

i am a 32 year old mother of 4...have psoriasis, not badly, but enough that

it breaks out in the dry winter months or when i am stressed...i have had

much pain, ache in the very last joints of my ring and middle fingers, wrist

aches, elbows, knees, ankles and back....i have been put on naproxen...i was

told i had arthritis in my right knee years ago at an er visit, swollen warm

achy....i was convinced it was rhuematoid but my blood work came back

normal...i have been doing much research online and am surprised to learn

that the signs and symptoms of ra and pa are alike! i feel almost relieved

to see that there is something that matches my symptoms!! i also suffer from

pcos, high blood pressure, and depression....

any advice? comments on making diagnosis? my next dr appt is next week.

thank you

karen

Posted March 13, 2007 · March 13, 2007

Welcome to the group ... You found a wonderful group here...

Love and peace always, Shaun and Barb...

Posted March 19, 2007 · March 19, 2007

Hi Sherry, I to have a son he is 17 months old his doctors repeatedly told me this condition would straighten itself out. I was not given a refferal to a neurosurgeon until he was to old. I feel very angry and let down by my doctors I'm unsure what to do. I'm going to keep trying different doctors to see if I can get a refferal for a helmet but I do anticipate the same response "it's to late". My doctors were aware of his condition before his 2 month bday. I'm afraid we have recieved awful advice from our doctors I still am unsure what to do if I come up with something I will let you know, I understand the frustration and stress this can cause I feel for you and wish you the best of luck. It is heartbreaking to here it's to late we all want are children to be happy and well adjusted. One thing the neurosurgeon did tell me is that the shape of the head will continue to change until around age 5, yes the majority of the shape change

is within 18 months but you can expect to see some improvement. I hope so for Jaxton (cute name) and my lin I also hope long shaggy hair is in style for a long time to come.Sheri <pokiedoodle@...> wrote: Hello. My name is Sheri . My son Jaxtyn has plagiocephaly that has gone untreated, thanks to (sorry) crappy dr's and insurance case workers.Jax was in the NICU just shy of 4 months. He was born with a CDH- Congenital Diaphragmatic Hernia. CDH occurs in 1 out of ever 2500 pregnancies- the

same rate as cystic fibrosis. Jax went onto ECMO within hours of being born and his course ran for 2 weeks. He was vent dependant for nearly 4 months. He has had many surgeries and hospitalizations, but is doing better than anyone would have ever expected! He has a g-tube, feeding issues, chronic lung disease and is speech delayed. If you would like to read more about Jax and his journey with CDH you can read the archives at his web site:www.savebabyjax.comI kept asking when Jax was in the NICU if he needed a helmet. Over and over I was told no, that his head would likely get better once he was home and learning to sit up, play on his tummy, etc. Jax was discharged in Oct. 2005. Once home Jax's head did change shape a bit, but still did not look right. I called a craniofacial dr here in Dallas in March 2006. The 1st available appointment wasn't until May! I took the 1st available and waited.The

day of his appointment anything that could go wrong, we wrong! I ended up being 30 minutes late to the appointment. My husband and I waited for 2 1/2 hours to see the dr only to have his nurse come out and say that he had to leave to see a NICU patient. I coulldn't believe this! Having been a parent of a NICU child I would NEVER want to delay someone else's child from seeing a dr. when in need. But it was still a real let down. They worked us in for another appointment as soon as they could, which if memory serves was later in the month. When the appointment day arrived I was very anxious to hear what the dr had to say. After 1 1/2 hour wait, we were finally called back. My husband was unable to attend this meeting so I was on my own. Jax & I saw the NP who asked lots of questions and she took ONE measurment of Jax's head. About 20 minutes later the dr finally came in. I am not exadurating when I say this man

spent no more than 3 minutes talking to me before leaving the room! All he did was read what the NP wrote & felt Jax's head a little. His opinion was that Jax's head SIZE was within normal range for his age and though his eyes were somewhat wide set, that studies showed somewhat wide set eyes are seen as "attractive". He didn't feel he needed anything done and said if in a YEAR I still didn't like the shape of his head to come back! I was FURIOUS that after all these months and 2 trips to his office I wasn't given any more time! Unhappy with his opinion I called the only other craniofacial care available in Dallas. The 1st available appointment was just after his 1st bday. At this visit they took all kinds of pictures and mearsurments. When I saw the NP she said YES he had plagiocephly! I was given info on 2 different kinds of helmets and told to find out which, if either, my insurance would cover. They also made

an appointment for Jax to have an MRI and see the team of dr's. The findings on the MRI showed he had some fluid in his forhead (he has a big forhead, but so do me and my hubbie). They couldn't decide if it was just normal anatomy for him or if the fluid might be an issue. They said we would follow up with another MRI in 3 months.When I met w/the dr's though they said he was too old now for a helmet to help! Again- I was so upset! By this time Jax was 14 months. I argued that I was still seeing changes in his head shape all the time so I knew it was still "moving". They agreed to try a helmet for 2 months to see if we got any correction. Well...my insurance said they woudln't pay for a helmet because he was over 12 months old!!! I was again furious! For nearly a year I'd been asking about a helmet and trying to get him in to see a dr. Plus, to top things off my husband changed jobs so we were on COBRA, which

would end by the time we could fight the decision and get the helmet covered. We learned our new insurance would cover the helmet up to 18 months old but ONLY if he met certain measurements.In the mean time Jax developed a 2nd inguinal hernia and had to go back into surgery. The incision later became so infected and he rejected the patch that was used to close the hernia, so he was back in the hospital on iv antibiodics. By the time this issue was finished so I could focus back on his helmet he was over 18 months old. Too late for me to even bother fighting the insurance company because more than likely a helmet was too late.Now my issue is this....I've called, and called trying to reach the NP at the craniofacial clinic about his follow-up MRI and she won't call me back! Jax's head is still measuring in the 90th percentile while the rest of him is 10-25th. (Daddy has a big head so maybe just gene's?) I'm noticing his

forhead looking bigger and one eye starting to sink in but I can't get anyone to respond to my calls!Has anyone else delt with plagiocephaly going untreated for so long? Any advice or thoughts would be GREATLY appreciated!Thanks for listening and I'm so glad I found the group!Love loveSheri Mom of Jaxtyn - 21 months- CDH survivor, gtube, chronic lung disease, plagiocephaly

No need to miss a message. Get email on-the-go with for Mobile. Get started.

Posted March 19, 2007 · March 19, 2007

Hi Sherry,

I'm sorry to hear you had so much trouble with your son. My son

also had a few other birth defects that caused the doctors to

overlook his torticollis which has since caused it's own set of

issues. Since you're in Dallas you might consider making an

appointment ASAP with Cranial Technologies.

http://www.cranialtech.com/

They're the leaders in the field and do have some experience with

older babies. My son wore a bad fitting helmet up until he was 12

months and has been in a DOCband for the last 7 months with good

correction for his age. It might be worth scheduling an appointment

to get their opinion. At our location they have referrals to band

friendly doctors who can write a prescription if they think he can

be helped and your regular doctor won't write one. I'd pay out of

pocket and fight the insurance later. Ours wouldn't pay for a

second (or third) helmet since they'd covered the first and there

was no 'proof' the first made him worse, but it was still the best

money we've ever spent.

You might also consider joining the older plagio site. I think

there are moms on that group who have tried helmets later.

OlderPlag/

We've also recently started seeing an ostopath and a cranial sacral

therapist for our son and I'm not sure if it's helped his head

shape, but it has helped his torticollis.

Good luck!

Sheila, mom to , 18 months, DOCband

> Hello. My name is Sheri . My son Jaxtyn has

plagiocephaly that has gone untreated,

> thanks to (sorry) crappy dr's and insurance case workers.

>

> Jax was in the NICU just shy of 4 months. He was born with a CDH-

Congenital

> Diaphragmatic Hernia. CDH occurs in 1 out of ever 2500 pregnancies-

the same rate as

> cystic fibrosis.

>

> Jax went onto ECMO within hours of being born and his course ran

for 2 weeks. He was

> vent dependant for nearly 4 months. He has had many surgeries and

hospitalizations, but

> is doing better than anyone would have ever expected! He has a g-

tube, feeding issues,

> chronic lung disease and is speech delayed. If you would like to

read more about Jax and

> his journey with CDH you can read the archives at his web site:

> www.savebabyjax.com

>

> I kept asking when Jax was in the NICU if he needed a helmet. Over

and over I was told no,

> that his head would likely get better once he was home and

learning to sit up, play on his

> tummy, etc.

>

> Jax was discharged in Oct. 2005. Once home Jax's head did change

shape a bit, but still

> did not look right. I called a craniofacial dr here in Dallas in

March 2006. The 1st available

> appointment wasn't until May! I took the 1st available and waited.

>

> The day of his appointment anything that could go wrong, we wrong!

I ended up being 30

> minutes late to the appointment. My husband and I waited for 2 1/2

hours to see the dr

> only to have his nurse come out and say that he had to leave to

see a NICU patient. I

> coulldn't believe this! Having been a parent of a NICU child I

would NEVER want to delay

> someone else's child from seeing a dr. when in need. But it was

still a real let down. They

> worked us in for another appointment as soon as they could, which

if memory serves was

> later in the month.

>

> When the appointment day arrived I was very anxious to hear what

the dr had to say. After

> 1 1/2 hour wait, we were finally called back. My husband was

unable to attend this

> meeting so I was on my own. Jax & I saw the NP who asked lots of

questions and she took

> ONE measurment of Jax's head.

>

> About 20 minutes later the dr finally came in. I am not

exadurating when I say this man

> spent no more than 3 minutes talking to me before leaving the

room! All he did was read

> what the NP wrote & felt Jax's head a little. His opinion was that

Jax's head SIZE was within

> normal range for his age and though his eyes were somewhat wide

set, that studies

> showed somewhat wide set eyes are seen as " attractive " . He didn't

feel he needed anything

> done and said if in a YEAR I still didn't like the shape of his

head to come back! I was

> FURIOUS that after all these months and 2 trips to his office I

wasn't given any more time!

>

> Unhappy with his opinion I called the only other craniofacial care

available in Dallas. The

> 1st available appointment was just after his 1st bday.

>

> At this visit they took all kinds of pictures and mearsurments.

When I saw the NP she said

> YES he had plagiocephly! I was given info on 2 different kinds of

helmets and told to find

> out which, if either, my insurance would cover. They also made an

appointment for Jax to

> have an MRI and see the team of dr's.

>

> The findings on the MRI showed he had some fluid in his forhead

(he has a big forhead,

> but so do me and my hubbie). They couldn't decide if it was just

normal anatomy for him

> or if the fluid might be an issue. They said we would follow up

with another MRI in 3

> months.

>

> When I met w/the dr's though they said he was too old now for a

helmet to help! Again- I

> was so upset! By this time Jax was 14 months. I argued that I was

still seeing changes in

> his head shape all the time so I knew it was still " moving " . They

agreed to try a helmet for

> 2 months to see if we got any correction.

>

> Well...my insurance said they woudln't pay for a helmet because he

was over 12 months

> old!!! I was again furious! For nearly a year I'd been asking

about a helmet and trying to

> get him in to see a dr. Plus, to top things off my husband changed

jobs so we were on

> COBRA, which would end by the time we could fight the decision and

get the helmet

> covered. We learned our new insurance would cover the helmet up to

18 months old but

> ONLY if he met certain measurements.

>

> In the mean time Jax developed a 2nd inguinal hernia and had to go

back into surgery.

> The incision later became so infected and he rejected the patch

that was used to close the

> hernia, so he was back in the hospital on iv antibiodics. By the

time this issue was finished

> so I could focus back on his helmet he was over 18 months old. Too

late for me to even

> bother fighting the insurance company because more than likely a

helmet was too late.

>

> Now my issue is this....I've called, and called trying to reach

the NP at the craniofacial clinic

> about his follow-up MRI and she won't call me back! Jax's head is

still measuring in the

> 90th percentile while the rest of him is 10-25th. (Daddy has a big

head so maybe just

> gene's?) I'm noticing his forhead looking bigger and one eye

starting to sink in but I can't

> get anyone to respond to my calls!

>

> Has anyone else delt with plagiocephaly going untreated for so

long? Any advice or

> thoughts would be GREATLY appreciated!

>

> Thanks for listening and I'm so glad I found the group!

>

> Love love

> Sheri

> Mom of Jaxtyn - 21 months- CDH survivor, gtube, chronic lung

disease,

> plagiocephaly

>

> ---------------------------------

> No need to miss a message. Get email on-the-go

> with for Mobile. Get started.

>

Posted March 19, 2007 · March 19, 2007

aww, it sounds like jaxtyns been through alot. i thought cheyennes situation was bad. good luck, little tough guy, i hope he does better soon. i wish plagio was more aware. i see those rsv commercials every so often, but not a plagio one with tort. it would be nice if they made people more aware of this. thanks,and good luck again. lexie,joey,joey,and cheyennecindy gostkowski <clg914@...> wrote: Hi Sherry, I to have a son he is 17 months old his doctors repeatedly told me this condition would straighten itself out. I was not given a refferal to a neurosurgeon until he was to old. I feel very angry and let down by my doctors I'm unsure what to do. I'm going to keep trying different doctors to see if I can get a refferal for a helmet but I do anticipate the same response "it's to late". My doctors were aware of his condition before his 2 month bday. I'm afraid we have recieved awful advice from our doctors I still am unsure what to do if I come up with something I will let you know, I understand the frustration and stress this can cause I feel for you and wish you the best of luck. It is heartbreaking to here it's to late we all want are children to be happy and well adjusted. One thing the neurosurgeon did tell me is that the shape of the head will continue to change until around age 5, yes the majority of the shape change is within 18 months

but you can expect to see some improvement. I hope so for Jaxton (cute name) and my lin I also hope long shaggy hair is in style for a long time to come.Sheri <pokiedoodle > wrote: Hello. My name is Sheri . My son Jaxtyn has plagiocephaly that has gone untreated, thanks to (sorry) crappy dr's and insurance case workers.Jax was in the NICU just shy of 4 months. He was born with a CDH- Congenital Diaphragmatic Hernia. CDH occurs in 1 out of ever 2500 pregnancies- the same rate as cystic fibrosis. Jax went onto ECMO within hours of being born and his course ran for 2 weeks. He was vent dependant for nearly 4 months. He has had many surgeries and hospitalizations, but is doing better than anyone would have ever expected! He has a g-tube, feeding issues, chronic

lung disease and is speech delayed. If you would like to read more about Jax and his journey with CDH you can read the archives at his web site:www.savebabyjax.comI kept asking when Jax was in the NICU if he needed a helmet. Over and over I was told no, that his head would likely get better once he was home and learning to sit up, play on his tummy, etc. Jax was discharged in Oct. 2005. Once home Jax's head did change shape a bit, but still did not look right. I called a craniofacial dr here in Dallas in March 2006. The 1st available appointment wasn't until May! I took the 1st available and waited.The day of his appointment anything that could go wrong, we wrong! I ended up being 30 minutes late to the appointment. My husband and I waited for 2 1/2 hours to see the dr only to have his nurse come out and say that he had to leave to see a NICU patient. I coulldn't believe this! Having been a parent of a NICU

child I would NEVER want to delay someone else's child from seeing a dr. when in need. But it was still a real let down. They worked us in for another appointment as soon as they could, which if memory serves was later in the month. When the appointment day arrived I was very anxious to hear what the dr had to say. After 1 1/2 hour wait, we were finally called back. My husband was unable to attend this meeting so I was on my own. Jax & I saw the NP who asked lots of questions and she took ONE measurment of Jax's head. About 20 minutes later the dr finally came in. I am not exadurating when I say this man spent no more than 3 minutes talking to me before leaving the room! All he did was read what the NP wrote & felt Jax's head a little. His opinion was that Jax's head SIZE was within normal range for his age and though his eyes were somewhat wide set, that studies showed somewhat wide set eyes are seen as

"attractive". He didn't feel he needed anything done and said if in a YEAR I still didn't like the shape of his head to come back! I was FURIOUS that after all these months and 2 trips to his office I wasn't given any more time! Unhappy with his opinion I called the only other craniofacial care available in Dallas. The 1st available appointment was just after his 1st bday. At this visit they took all kinds of pictures and mearsurments. When I saw the NP she said YES he had plagiocephly! I was given info on 2 different kinds of helmets and told to find out which, if either, my insurance would cover. They also made an appointment for Jax to have an MRI and see the team of dr's. The findings on the MRI showed he had some fluid in his forhead (he has a big forhead, but so do me and my hubbie). They couldn't decide if it was just normal anatomy for him or if the fluid might be an issue. They said we would follow up

with another MRI in 3 months.When I met w/the dr's though they said he was too old now for a helmet to help! Again- I was so upset! By this time Jax was 14 months. I argued that I was still seeing changes in his head shape all the time so I knew it was still "moving". They agreed to try a helmet for 2 months to see if we got any correction. Well...my insurance said they woudln't pay for a helmet because he was over 12 months old!!! I was again furious! For nearly a year I'd been asking about a helmet and trying to get him in to see a dr. Plus, to top things off my husband changed jobs so we were on COBRA, which would end by the time we could fight the decision and get the helmet covered. We learned our new insurance would cover the helmet up to 18 months old but ONLY if he met certain measurements.In the mean time Jax developed a 2nd inguinal hernia and had to go back into surgery. The incision later became so

infected and he rejected the patch that was used to close the hernia, so he was back in the hospital on iv antibiodics. By the time this issue was finished so I could focus back on his helmet he was over 18 months old. Too late for me to even bother fighting the insurance company because more than likely a helmet was too late.Now my issue is this....I've called, and called trying to reach the NP at the craniofacial clinic about his follow-up MRI and she won't call me back! Jax's head is still measuring in the 90th percentile while the rest of him is 10-25th. (Daddy has a big head so maybe just gene's?) I'm noticing his forhead looking bigger and one eye starting to sink in but I can't get anyone to respond to my calls!Has anyone else delt with plagiocephaly going untreated for so long? Any advice or thoughts would be GREATLY appreciated!Thanks for listening and I'm so glad I found the group!Love loveSheri

Mom of Jaxtyn - 21 months- CDH survivor, gtube, chronic lung disease, plagiocephaly No need to miss a message. Get email on-the-go with for Mobile. Get started.

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Posted March 19, 2007 · March 19, 2007

if i were you i would try shriners my grandma told me that organization helps in some cases,or i tried first hand foundation lexie,joey,joey,and cheyenneSheri <pokiedoodle@...> wrote: Hello. My name is Sheri . My son Jaxtyn has plagiocephaly that has gone untreated, thanks to (sorry) crappy dr's and insurance case workers.Jax was in the NICU just shy of 4 months. He was born with a CDH- Congenital Diaphragmatic Hernia. CDH occurs in 1 out of ever 2500 pregnancies- the same

rate as cystic fibrosis. Jax went onto ECMO within hours of being born and his course ran for 2 weeks. He was vent dependant for nearly 4 months. He has had many surgeries and hospitalizations, but is doing better than anyone would have ever expected! He has a g-tube, feeding issues, chronic lung disease and is speech delayed. If you would like to read more about Jax and his journey with CDH you can read the archives at his web site:www.savebabyjax.comI kept asking when Jax was in the NICU if he needed a helmet. Over and over I was told no, that his head would likely get better once he was home and learning to sit up, play on his tummy, etc. Jax was discharged in Oct. 2005. Once home Jax's head did change shape a bit, but still did not look right. I called a craniofacial dr here in Dallas in March 2006. The 1st available appointment wasn't until May! I took the 1st available and waited.The day of

his appointment anything that could go wrong, we wrong! I ended up being 30 minutes late to the appointment. My husband and I waited for 2 1/2 hours to see the dr only to have his nurse come out and say that he had to leave to see a NICU patient. I coulldn't believe this! Having been a parent of a NICU child I would NEVER want to delay someone else's child from seeing a dr. when in need. But it was still a real let down. They worked us in for another appointment as soon as they could, which if memory serves was later in the month. When the appointment day arrived I was very anxious to hear what the dr had to say. After 1 1/2 hour wait, we were finally called back. My husband was unable to attend this meeting so I was on my own. Jax & I saw the NP who asked lots of questions and she took ONE measurment of Jax's head. About 20 minutes later the dr finally came in. I am not exadurating when I say this man spent no

more than 3 minutes talking to me before leaving the room! All he did was read what the NP wrote & felt Jax's head a little. His opinion was that Jax's head SIZE was within normal range for his age and though his eyes were somewhat wide set, that studies showed somewhat wide set eyes are seen as "attractive". He didn't feel he needed anything done and said if in a YEAR I still didn't like the shape of his head to come back! I was FURIOUS that after all these months and 2 trips to his office I wasn't given any more time! Unhappy with his opinion I called the only other craniofacial care available in Dallas. The 1st available appointment was just after his 1st bday. At this visit they took all kinds of pictures and mearsurments. When I saw the NP she said YES he had plagiocephly! I was given info on 2 different kinds of helmets and told to find out which, if either, my insurance would cover. They also made an

appointment for Jax to have an MRI and see the team of dr's. The findings on the MRI showed he had some fluid in his forhead (he has a big forhead, but so do me and my hubbie). They couldn't decide if it was just normal anatomy for him or if the fluid might be an issue. They said we would follow up with another MRI in 3 months.When I met w/the dr's though they said he was too old now for a helmet to help! Again- I was so upset! By this time Jax was 14 months. I argued that I was still seeing changes in his head shape all the time so I knew it was still "moving". They agreed to try a helmet for 2 months to see if we got any correction. Well...my insurance said they woudln't pay for a helmet because he was over 12 months old!!! I was again furious! For nearly a year I'd been asking about a helmet and trying to get him in to see a dr. Plus, to top things off my husband changed jobs so we were on COBRA, which

would end by the time we could fight the decision and get the helmet covered. We learned our new insurance would cover the helmet up to 18 months old but ONLY if he met certain measurements.In the mean time Jax developed a 2nd inguinal hernia and had to go back into surgery. The incision later became so infected and he rejected the patch that was used to close the hernia, so he was back in the hospital on iv antibiodics. By the time this issue was finished so I could focus back on his helmet he was over 18 months old. Too late for me to even bother fighting the insurance company because more than likely a helmet was too late.Now my issue is this....I've called, and called trying to reach the NP at the craniofacial clinic about his follow-up MRI and she won't call me back! Jax's head is still measuring in the 90th percentile while the rest of him is 10-25th. (Daddy has a big head so maybe just gene's?) I'm noticing his

forhead looking bigger and one eye starting to sink in but I can't get anyone to respond to my calls!Has anyone else delt with plagiocephaly going untreated for so long? Any advice or thoughts would be GREATLY appreciated!Thanks for listening and I'm so glad I found the group!Love loveSheri Mom of Jaxtyn - 21 months- CDH survivor, gtube, chronic lung disease, plagiocephaly

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Posted March 19, 2007 · March 19, 2007

OH MY! What a story. First off, I'm keeping you and your family in my prayers.........what an ordeal for mommy and Jax! I also wanted to let you know there is an older plagio group on that might be beneficial to join, I've joined to see what things to look for since my plagio baby is in treatment right now and I just want to see what to watch out for in the future. But I think there are a lot of mom's on that board who have been thru many different procedures, dr. appts., opinions, etc. Just like you. I hope that you are able to find some help on that board (or this one) and that this can come to a closure sometime soon. Again you are in my thoughts and prayers. Mom to , 7 1/2 months old, plagio, StarBanded 1/11/07 "In the depths of winter, I finally found there was in me an invincible summer."

Posted March 19, 2007 · March 19, 2007

Welsome Sheri!

I am so sorry for all you have been thru - the added stress of uncooperative drs is soooo unnecessary! What a strong boy Jax must be!!! (BTW, my son's name is Dax!)

There is an Older Plagio board - OlderPlag : Untreated Positional Plagiocephaly

Maybe they can help you.

Also, I think there is a Cranial Tech in Dallas - call and see if they can do a consult and can help. They may know a good DR for Jax to see.

Positional Plagiocephaly (Abnormal Head Shape, Flat Head Syndrome) Cranial Tech

Hope this all helps a little and that you get some answers for your guy!!!

Jen and Luli (15mo.)Left Tort - Right Plagio - Hanger Band Grad - CATallulah Jayne -AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

Posted March 20, 2007 · March 20, 2007

Welcome and I know how you feel I think we all do... I used to have

really bad itching skin and scabs... Finally a combo of many different meds and

stuff have helped... Just the arthritis is killing me now, but at least I am no

walking scab girl...

Love and peace always,

Shaun and Barb...

Posted March 30, 2007 · March 30, 2007

Viv - welcome - I wrote you on the EOH list. Hang in there, Kath

**************************************

See what's free at http://www.aol.com.

Posted March 30, 2007 · March 30, 2007

Thanks Kath. I saw your letter there.

Viv

>

> Viv - welcome - I wrote you on the EOH list. Hang in there, Kath

>

> **************************************

> See what's free at http://www.aol.com.

>

Posted March 30, 2007 · March 30, 2007

Hi Viv,

Welcome to the list. You're in the right place. Comments interspersed.

S S

Hi,

I am new to the group. I have a three year old late-talker who is

going to see a specialist. I know he will get an autism diagnosis, and

I hate this. I hate the whole thought of autism. It seems that

everyone is getting a diagnosis of autism these days. There are even

three on my street alone!

*Do you live near a golf course? Downwind of a coal-fired power plant?

I have so many questions. I know that

children with autism have terrible problems.

*Recovery is possible. Generation Rescue might be helpful for you as well as

this list. Autism is a spectrum so the range of challenges varies. There are

many individuals with high functioning autism. Temple Grandin is a professor in

Colorado, Shore is working on his doctorate and teaches on the college

level, etc, the son of one of the members of this list is attending college,

etc.

Is my son going to start

banging his head?

*Depends on all sorts of things.

Or loosing all his words?

*One of the best ways to avoid this is to avoid any more vaccines.

How about poop problems?

*How's his diet?

He doesn't do any of these things, but he's going to start that when

he gets older if he has autism, right?

*Not necessarily, particularly if you start appropriate biomedical.

What about siezurs?

*While higher among those on spectrum than in the NT (neurotypical) population,

this is not a given.

I just want

this to go away!!!!!

*It can, but it's not easy or quick.

Yesterday I read the Hufington Post article by

Kirby. He wrote his book two years ago, right? In that time,

there must be more and more proof of what he says is right! So, when I

go to ask the specialist, he's going to know all about mercury

poisoning and the clear connection to autism, right?

*Amazingly enough most are not likely to understand or believe the connection,

or if he or she knows about the connection it's likely he or she will deny it,

particularly if its a doc who pushes flu shots.

I am never going

to quit until my darling son gets the treatment that works to fix this

terrible problem!!! I know this list can help me.

*Here are some things to get you started:

Get a DDI hair elements test if you haven't already and then apply the counting

rules (You can order one yourself without a doc through Direct Lab Services,

April in Autism Awareness Month, so they may have a special. They offer a

discount if you mention this list).

Educate yourself as much as possible before you meet with the specialist.

Read the FAQs of this list.

Don't allow a " challenge " test.

Find a mercury-free dentist.

Find any mercury thermometers in your house and safely dispose of them by

contacting your local toxic waste collection center.

See if your library has Andy Cutler's Hair Interpretation book, if not, ask them

to order it.

*Has your son had any EI? How's his receptive communication? Does he point?

Does he show you things? Is he a picky eater? How's his eye contact? Consider

teaching him some simple sign language while continuing to work on speech. Did

he have a reaction to any particular vaccine?

I have put together a autism resource list of books, videos, articles,

abbreviations, etc. Let me know if you'd like a copy.

viv

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

Posted March 30, 2007 · March 30, 2007

,

Thanks. My son is a normal kid except that he doesn't talk to much. He

likes to watch a lot of TV,and he pulls me to the fridge when he wants

food. But he's a good boy. He doesn't have a bad diet. We live in a

clean place with no polution. I never had a flu shot and he didn't

neither. I know that all autistic kids have bad problems. Kirby

said on Hufington post about how all the children with autism have

diahhea flowing down onto the carpets. That's how you can tell a kid

with autism, he said. I will look at Generation Rescue. But first, I

will ask the specialist. We are going on Monday.

Viv

>

> Hi,

> I am new to the group. I have a three year old late-talker who is

> going to see a specialist. I know he will get an autism diagnosis, and

> I hate this. I hate the whole thought of autism. It seems that

> everyone is getting a diagnosis of autism these days. There are even

> three on my street alone!

>

> *Do you live near a golf course? Downwind of a coal-fired power plant?

>

> I have so many questions. I know that

> children with autism have terrible problems.

>

> *Recovery is possible. Generation Rescue might be helpful for you

as well as this list. Autism is a spectrum so the range of challenges

varies. There are many individuals with high functioning autism.

Temple Grandin is a professor in Colorado, Shore is working on

his doctorate and teaches on the college level, etc, the son of one of

the members of this list is attending college, etc.

>

> Is my son going to start

> banging his head?

>

> *Depends on all sorts of things.

>

> Or loosing all his words?

>

> *One of the best ways to avoid this is to avoid any more vaccines.

>

> How about poop problems?

>

> *How's his diet?

>

> He doesn't do any of these things, but he's going to start that when

> he gets older if he has autism, right?

>

> *Not necessarily, particularly if you start appropriate biomedical.

>

> What about siezurs?

>

> *While higher among those on spectrum than in the NT (neurotypical)

population, this is not a given.

>

> I just want

> this to go away!!!!!

>

> *It can, but it's not easy or quick.

>

> Yesterday I read the Hufington Post article by

> Kirby. He wrote his book two years ago, right? In that time,

> there must be more and more proof of what he says is right! So, when I

> go to ask the specialist, he's going to know all about mercury

> poisoning and the clear connection to autism, right?

>

> *Amazingly enough most are not likely to understand or believe the

connection, or if he or she knows about the connection it's likely he

or she will deny it, particularly if its a doc who pushes flu shots.

>

> I am never going

> to quit until my darling son gets the treatment that works to fix this

> terrible problem!!! I know this list can help me.

>

> *Here are some things to get you started:

>

> Get a DDI hair elements test if you haven't already and then apply

the counting rules (You can order one yourself without a doc through

Direct Lab Services, April in Autism Awareness Month, so they may have

a special. They offer a discount if you mention this list).

>

> Educate yourself as much as possible before you meet with the

specialist.

>

> Read the FAQs of this list.

>

> Don't allow a " challenge " test.

>

> Find a mercury-free dentist.

>

> Find any mercury thermometers in your house and safely dispose of

them by contacting your local toxic waste collection center.

>

> See if your library has Andy Cutler's Hair Interpretation book, if

not, ask them to order it.

>

> *Has your son had any EI? How's his receptive communication? Does

he point? Does he show you things? Is he a picky eater? How's his

eye contact? Consider teaching him some simple sign language while

continuing to work on speech. Did he have a reaction to any

particular vaccine?

>

> I have put together a autism resource list of books, videos,

articles, abbreviations, etc. Let me know if you'd like a copy.

> viv

>

> _______________________________________________

> Join Excite! - http://www.excite.com

> The most personalized portal on the Web!

>

Posted March 30, 2007 · March 30, 2007

Viv,

Some ASD kids have diarrhea and tantrums and some don't. Delayed speech and

pulling people to get what he wants are developmental delays. We didn't have

diarrhea or tantrums either.

[ ] Re: new member