Help

[Guest guest]

,

15mg of clonodine?? How much does your daughter weigh? I am just curious as my

daughter also takes clonodine and melatonin at bedtime but no where near that

amount. I like you am very thankful for that medication :-)

Tammy

----- Original Message -----

Clondine also works well. My daughter used to be able to maintain herself on

about 4yrs of sleep. She is autistic & safety is a big concern of ours. She

take 15mg of clondine @ bedtime. It took us awhile to get the correct dosage

but now she sleeps 10-11hrs at night. She weaned herself from naps @ 22mos.

[Guest guest]

Tammy....OOOOPPPS my mistake -- I forget to put my decimal point in. Its .15

mg of clondine. My daughter is 4yrs & weighs alittle over 40lbs. She's 90%

in height/weight. We may have to see if the dr will adjust her medicine. A

couple of times this week, she has gotten up at 5am. & it makes a very long

day for everyone. I am going to wait awhile to see if its corrects itself.

Her doctor just had a baby & decided to take a leave until Jan (I was rather

surprised about this -- having 5 kids it seems like sonmone always is at the

drs. We saw her 4wks before the baby was due & she said she was taking 4wks

off) . I really hate to have to break another doctor in.

----- Original Message -----

> ,

> 15mg of clonodine?? How much does your daughter weigh? I am just curious

as my daughter also takes clonodine and melatonin at bedtime but no where

near that amount. I like you am very thankful for that medication :-)

> Tammy

[Guest guest]

I am a taster too and often lick the spoon after my son has his

supplements. The time I tasted his DMSA and ALA it was in

applesauce. I had a metallic taste in my mouth immediately (I have

a few amalgams left) and have never done it again. Just dividing up

the doses makes my husband sneeze. I think you should take A LOT of

antioxidents, just like we give them to help with your side

effects. Vitamin C, A, E, also some Magnesium, Milk THistle, Zinc,

and Essential Fatty Acids . Stuff you have around the house already

for your child should do. Take at least as much as you give him.

Hope your reaction goes away soon.

PS I am having my last amalgams out in January and then will start

chelating myself! :0) Maddie

> HI. My first post to this group and it will be a story to

remember.

> My son started DMSA.good results. The problem- I sipped it

> periodically throughout the treatment time as it tasted horrible

and

> we had to make it palatable. I have 12 amalgam fillings- never

> thinking that just a little would make me react.I got a rash

around

> my jawline and neck first then it receded. Regular doc put me on

> celebrex for my knee yesterday(within a 5 day span of the mercury

> incident) and now I have a rash all over. Help. I have been

> desperately searching in Mr. Cutlers book for what i should do for

> this. And trying to discern if it is a reaction to celebrex or if

the

> mercury is making my immune system resppond abberantly. I do not

see

> a holistic md for myself, as I already am constantly with my son

> paying out of pocket. I have been on the list to treat but as all

of

> you know you are last on the list. I have contacted my sons MDm

but

> as I am not a patient of his I do not know how much advice they

will

> give me and of course the internist will assume I am from another

> planet if I broach any of these questions. Feel free to email me

> personally with help. Thanks in advance- " Reacting in Pa. "

[Guest guest]

I would suggest smearing a lot of OTC hydrocortisone cream on the

rash, and taking magnesium and vitamin C supplements 4 times a day.

Milk thisle extract too if you happen to have it around. Epsom salt

baths may also help.

Andy

> HI. My first post to this group and it will be a story to remember.

> My son started DMSA.good results. The problem- I sipped it

> periodically throughout the treatment time as it tasted horrible and

> we had to make it palatable. I have 12 amalgam fillings- never

> thinking that just a little would make me react.I got a rash around

> my jawline and neck first then it receded. Regular doc put me on

> celebrex for my knee yesterday(within a 5 day span of the mercury

> incident) and now I have a rash all over. Help. I have been

> desperately searching in Mr. Cutlers book for what i should do for

> this. And trying to discern if it is a reaction to celebrex or if

the

> mercury is making my immune system resppond abberantly. I do not see

> a holistic md for myself, as I already am constantly with my son

> paying out of pocket. I have been on the list to treat but as all of

> you know you are last on the list. I have contacted my sons MDm but

> as I am not a patient of his I do not know how much advice they will

> give me and of course the internist will assume I am from another

> planet if I broach any of these questions. Feel free to email me

> personally with help. Thanks in advance- " Reacting in

[Guest guest]

In a message dated 1/17/03 9:11:11 AM, wport@... writes:

<< My internist thinks its time to start some hard core type medicine and

suggested Embrel >>

GO for it!

Get healthy...or at least FEEL healthy...

Pris

Show Biz tricks for pigs!

Awaken your pigs mind and give him challenges....

See our book at http://valentinesperformingpigs.com/trainingbook.html

[Guest guest]

l too do not have a good quality of life. l had to go up on the prednisone

just to get some relief. l know it is a dangerous drug but at this point l

had no choice, the pain was just too much. Most of the drugs like Enbrel and

Remicade are tough drugs. My doctor worked with me to help elimate some of

the pain. Try and work something out with your doctor. Good

rheumatic Help

> I'm writing again to ask for any help you can give me. As I've said in

the past, I've been on minocin for 9 years and did very well. I am now in

terrible pain, can't walk well and can't sleep. I don't know what to do. I

am going to ask Dr. Whitman for IV's when I see him on Wednesday. My

internist thinks its time to start some hard core type medicine and

suggested Embrel. He knows how I feel about taking that kind of medication

but he doesn't know what else to offer.

>

> I am now back on minocin, after 3 weeks off, prednisone 3 mg and relafen.

Nothing is helping. My labs came back rhuematoid factor 109.7 and c reative

protein very high. Any suggestions or help will be greatly appreciated. I

don't know what to do but I can't go on like this any more. I'm not having

any good quality of life.

>

> Please help.

>

> Thanks,

> ette

>

>

>

[Guest guest]

Dear ette,

Most people here would, I think, suggest to you that you first try to get the

IV's you mentioned you were going to ask your doctor about. Also, you might be

told that it's time to switch to doxycycline. After so many years on minocin, I

think it has been advised that a switch should be made. Also, what's the dosage

you're taking? Maybe it's time to change that. Just one person's thoughts.

Hang in there.

Ellen McCool

rheumatic Help

I'm writing again to ask for any help you can give me. As I've said in the

past, I've been on minocin for 9 years and did very well. I am now in terrible

pain, can't walk well and can't sleep. I don't know what to do. I am going to

ask Dr. Whitman for IV's when I see him on Wednesday. My internist thinks its

time to start some hard core type medicine and suggested Embrel. He knows how I

feel about taking that kind of medication but he doesn't know what else to

offer.

I am now back on minocin, after 3 weeks off, prednisone 3 mg and relafen.

Nothing is helping. My labs came back rhuematoid factor 109.7 and c reative

protein very high. Any suggestions or help will be greatly appreciated. I

don't know what to do but I can't go on like this any more. I'm not having any

good quality of life.

Please help.

Thanks,

ette

[Guest guest]

>

>

> I am now back on minocin, after 3 weeks off, prednisone 3 mg and

relafen. Nothing is helping. My labs came back rhuematoid factor

109.7 and c reative protein very high. Any suggestions or help will

be greatly appreciated. I don't know what to do but I can't go on

like this any more. I'm not having any good quality of life.

>

> Please help.

>

> Thanks,

> ette

I'd be tempted to increase that prednisone for a short period. Maybe a

10 day dose pak to knock down all that inflammation. Start at 25mg

and go down from there over the next 10 days. Personally, I doubt

that 3mg is helping that much. When I had a severe flare, 10-25mg of

Pred helped, but less and the pain came back. Once you get the flare

calmed down, then maybe the minocin or IV's will have a better chance

to do their work.

Mark

[Guest guest]

Good advice, Mark!

rheumatic Re: Help

>

>

> I am now back on minocin, after 3 weeks off, prednisone 3 mg and

relafen. Nothing is helping. My labs came back rhuematoid factor

109.7 and c reative protein very high. Any suggestions or help will

be greatly appreciated. I don't know what to do but I can't go on

like this any more. I'm not having any good quality of life.

>

> Please help.

>

> Thanks,

> ette

I'd be tempted to increase that prednisone for a short period. Maybe a

10 day dose pak to knock down all that inflammation. Start at 25mg

and go down from there over the next 10 days. Personally, I doubt

that 3mg is helping that much. When I had a severe flare, 10-25mg of

Pred helped, but less and the pain came back. Once you get the flare

calmed down, then maybe the minocin or IV's will have a better chance

to do their work.

Mark

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

I agree with Mark too. That approach also worked for me.

Sharon

> >

> >

> > I am now back on minocin, after 3 weeks off, prednisone 3 mg and

> relafen. Nothing is helping. My labs came back rhuematoid factor

> 109.7 and c reative protein very high. Any suggestions or help

will

> be greatly appreciated. I don't know what to do but I can't go on

> like this any more. I'm not having any good quality of life.

> >

> > Please help.

> >

> > Thanks,

> > ette

>

> I'd be tempted to increase that prednisone for a short period.

Maybe a

> 10 day dose pak to knock down all that inflammation. Start at

25mg

> and go down from there over the next 10 days. Personally, I doubt

> that 3mg is helping that much. When I had a severe flare, 10-

25mg of

> Pred helped, but less and the pain came back. Once you get the

flare

> calmed down, then maybe the minocin or IV's will have a better

chance

> to do their work.

>

> Mark

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi

I received the digest this am. Its a little slow but now unusual.

I hope you get this one

Marge

> Is there a reason why I am not receiving any emails from the board

> today? Or is everyone enjoying the Spring weather?

>

>

>

[Guest guest]

In a message dated 5/28/2003 2:40:50 PM Pacific Daylight Time,

armstrog@... writes:

> Has anyone in the group had shingles and if so how long did they last?

> Any hints as how to handle the pain?

> Thanks

>

Oh the most publizied case of shingles I have ever seen was when Dave

Letterman got them recently and took a month off from work. Here is some links

about

his case. ALso the Prime Minister of Canada has Shingles.

<A

HREF= " http://www.nationalpost.com/national/story.html?id=A4475F86-AD2A-4147-B507\

-6D071BE3185B " >

http://www.nationalpost.com/national/story.html?id=A4475F86-AD2A-4147-B507-6D071\

BE3185B</A>

<A

HREF= " http://www.torontosun.com/NewsStand/TorontoSun/Lifestyle/2003/05/16/88451.\

html " >Toronto Sun: LIFE - Shedding light on shingles</A>

<A

HREF= " http://abcnews.go.com/sections/GMA/Dr/GMA030303Shingles_letterman.h\

tml " >ABCNEWS.com : What is Illness That Keeps Letterman Out Sick?</A>

Pritchard

Live the Peace

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A>

( my web page)

<A HREF= " http://www.melungeons.com/articles/melungeon_music0403.htm " >Melungeon

Music</A> ( article)

[Guest guest]

In a message dated 5/28/03 2:53:29 PM, KPSB2@... writes:

> Has anyone in the group had shingles and if so how long did they last?

> > Any hints as how to handle the pain?

> > Thanks

> >

>

My husband got them and was only sick for a few days, no big deal. His

father, however, has endured a lot of pain from them.

Pris

Bored , chubby pig? Teach him sports!

See our book at www.valentinesperformingpigs.com

[Guest guest]

Ed, Just that you are searching for how to help your son you sound like

a wonderful father! And your son is still young -so whether the

diagnosis of apraxia is correct or incorrect -by seeking answers

now -you are doing all you can so you don't have to look back years

down the road and think the dreaded words " if only "

Since your son won't be three until October and is " a late talker "

he may qualify for Early Intervention therapy services through the

state ....for free or nominal cost in most state - in your case in

NJ it's free. The evaluation is free too. I relate to what you are going

through because nobody

told us about Early Intervention services either -and it's really

annoying as well as sad that we were not told. We did put Tanner

into private therapy at a hospital at 2.3 yrs old -thinking our insurance

would cover it -and ended up paying for it out of pocket back then.

It was 4-5 months of (yes even back then expensive)2-3x week therapy with 'no'

progress later when Tanner was diagnosed with apraxia at almost

three -and when we learned through a neighbor about Early

Intervention (who up till then also thought of Tanner as " just " a

late talker) So Tanner had about 6 weeks of EI with Zimet CCC -SLP who

we are still close with today! She is an awesome EI therapist now working in

Georgia.

http://www.cherab.org/information/familiesrelate/letter.html

(this was in March of 1999 when Tanner was first diagnosed as

apraxic and a month later when I founded the first nonprofit for

apraxia -before I founded CHERAB -it was called Children's Apraxia

Network. Back then there was nothing on the internet about oral

apraxia in children which Tanner had the signs of at first -not

verbal apraxia since he was nonverbal, or how a child can babble as

a baby and then regress and it's apraxia 'not' autism, the

importance of taking an apraxic child to a neurodevelopmental MD to

check for soft signs -what soft signs were, the scientific reasons

why EFAs may benefit a child with apraxia and other communication

impairments and what formula may work and why, because

unfortunately for my son Tanner -we had to learn all of the above

the very very hard way before we could put them each up on the

CHERAB site)

Once your child turns three, if qualified, he will be entitled to

services through your town's school. I happen to know that in Tom's

River Bilker is working with the Board of Education. 's

son is the inspiration for The Talking Page

http://www.debtsmart.com/talk and they were recently written up in a

feature article for the Asbury Park Press

http://www.debtsmart.com/talk/jaccarino.html can help you locally.

In addition -from our group there are a huge amount of members -more

than just about any other place in the world right in your backyard -

which is both the good, the bad, and the scary news. (and why I

moved to Florida until they figure out why!) Kathy a Kindergarten

teacher from our group that also lives for example in your area has

4 children with special needs -apraxic twins -ADHD that she is now

raising as a single mom (Hey Kathy the next

documentary/books/articles should be about you!!) on

who is one of the now many moderators of this CHERAB grouplist is

also from your area and she at times organizes get togethers which

are posted here.

You can secure inexpensive therapy services typically as well

through local universities who have a speech and language

department. The therapy is typically done by a graduating student

and overseen by a PhD. There is a list of universities and much

more here at CHERAB's partner site Speechville

http://www.speech-express.com/resources/new-jersey.html

You may be able to secure services through your insurance company as

well -you just may not be using the right codes. (all listed in The Late

Talker) You also want to

know if your child that was up till the other day thought of as just

a late talker until he was diagnosed with apraxia

http://www.cherab.org/information/speechlanguage/verbalapraxia.html

has other diagnosis such as oral apraxia

http://www.cherab.org/information/speechlanguage/oralapraxia.html

or mild " soft signs "

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

I highly suggest taking your child to a neurodevelopmental MD such

as a pediatric neurologist or neurodevelopmental pediatrician to

confirm or rule out soft signs which may or may not be noticed

or " picked up " by a regular pediatrician. My son Tanner who all

viewed as " just " a late talker even though he had obvious signs that

nobody noticed -ended up being diagnosed repeatedly (I believe in

second and third opinions as well as taking the child to various

types of professionals) with oral and verbal apraxia, mild

hypotonia, and sensory integration dysfunction.

Much of The Late Talker book is about what you can do at home to

help -how to secure appropriate services for your child with any

type of speech and language delay or disorder, what services may be

available -and much more. This book has received incredible reviews

from both parents as well as leading medical, speech, and

educational professionals at this point.

Since it's the first book of it's kind with a parent's and

pediatrician's point of view -co written by neurodevelopmental

pediatrician Dr. Marilyn Agin who is NYC's Medical Director for

Early Intervention -the subject and importance of Early Intervention

is well covered. Take The Late Talker book with you to whatever

school/therapist/MD you see so when they ask you " What is apraxia? "

you can hand them the book to look through (and then let them get

their own because you will want to use the book as a reference over

and over)

Being that I'm also one of the co authors this may all seem like I'm

tooting my own horn -but as a parent of two boys who both had

special needs -Dakota's diagnosis from birth injury of facial palsy

and spastic torticollis (crushed facial nerves and torn neck

muscles) as well as eating and breathing problems being more

serious.. but 'understood' by the professionals where we as parents

could take comfort in knowing that the professionals were doing all

they could to help Dakota so we didn't have to do much advocating -

and Tanner being apraxic -although not life threatening -also

serious, but not understood by most of the professionals -so we had

to do much on our own which is scary, frustrating -and very sad. To

add insult to injury -you will most likely hear that because your

child is a late talker with a diagnosis of apraxia -he has a " type

of autism " .

Apraxia, just like sensory integration dysfunction or hypotonia, is

a unique diagnosis that can stand alone -or be found co existing in

other conditions. Apraxia in itself is not a cognitive disorder -

most children with apraxia have average to above average

intelligence. The Late Talker is a book that I would have loved to

have when Tanner was " just " a late talker -so we could have known

what to do. As I said above -it would have saved Tanner, as well as

my husband and I -from learning by doing it all the hard way. Like

me -you don't have to do it the hard way -buy the book.

http://www.speech-express.com/late.talker.html

Since you may be wondering as a new parent. Tanner is doing amazing and will be

attending an " accelerated academics " college prep K-12 private school next year

-he was top in his class in public school mainstreamed Kindergarten (with pull

out ST and OT) Tanner's update to The Talking Page (with Lindsey's update as

well as 's and Tanner's brothers) which is working on now is here

(The recording is about 4 meg so it will take a while for you to download.)

The file is at:

http://www.debtsmart.com/talk/tanner_and_lindsey.wav

Best to you and your family.

=====

[Guest guest]

I have 4 children two of which had/have speech issues. My oldest son had

fluid in his ears and therefore never heard the words correctly. He started

early

intervention at almost 4 years old. He had to be reprogrammed to learn to say

the words correctly. Once they learn them the wrong way it is a pattern. He

spent 2 years of EI and 4 years in elementary school in speech therapy. He

speaks perfectly fine now. My youngest son has verbal apraxia. The only advice I

can offer you is to keep him in speech therapy and practice at home.

(Quakertown, PA)

19, 16, Dylan 6 & 3.2 years (verbal apraxia)

[Guest guest]

My daughter has CAPD. She is also hard of hearing and we tried sign with her

Due to poor hand skills she could only sign back a few signs but could read

several. We decided to go with the PECS system. www.mayerjohnson.com These

cards really helped and some insurances cover them. We put them in a

business card file and she uses them every where we go. Look into it. Good

luck.

Mom to Sedona epilepsy, cp and capd

chipperdona@...

-- [ ] Help

My 2 1/2 yr. old son is very frustrated when trying to communicate.

He learned most of his vocabulary before he had his PE tubes. With

fluid in his ears, he heard the words as if under water. He sounded

as if he was deaf, omitting all consenants. Instead of BALL, he

says AH. Instead of RACE CAR, he says, A-AH. He has not made much

progress at all, since having the tubes put in. His speech

pathologists have declared him as having dyspraxia of speech. He

does not fit the discription, in my opinion. He does talk in

sentances, saying them exactly the same each time he says them.

They are spoken correctly, but do not have any consenants to allow

others to understand them. I believe that his speech issues have

everything to do with his hearing loss. I believe that he needs to

be reprogramed. Can anyone send me in the right direction? I need

to know HOW to teach him. Meanwhile, he is losing interest in

signing, and is becoming even more frustrated than before. Help me

help him.

[Guest guest]

Hi -

It sounds like you need to go see a dev pediatrician or a pediatric

neuro. Apraxia shouldn't be diagnosed without the help of a ped

neuro or a neuro eval. Your child may be apraxic - my son had the

same replacements each and everytime he said a word, so his sentences

generally sounded the same. He had taught himself how to speak and

had done it incorrectly. He is, however, classically apraxic, and I

never doubted the diagnosis. You need some additional information

before throwing your lot in with this - especially since he's getting

frustrated and losing interest in signing. Maybe, even though you

may like your ST, you need a new one. Sometimes 2 perfectly

competent and nice people don't click - can happen between kids and

adults, too. I don't know where you are located, but there are

people from all over on this list - just post your location and

you'll get lots of suggestions.

Good luck!

Marina

> My 2 1/2 yr. old son is very frustrated when trying to

communicate.

> He learned most of his vocabulary before he had his PE tubes. With

> fluid in his ears, he heard the words as if under water. He

sounded

> as if he was deaf, omitting all consenants. Instead of BALL, he

> says AH. Instead of RACE CAR, he says, A-AH. He has not made much

> progress at all, since having the tubes put in. His speech

> pathologists have declared him as having dyspraxia of speech. He

> does not fit the discription, in my opinion. He does talk in

> sentances, saying them exactly the same each time he says them.

> They are spoken correctly, but do not have any consenants to allow

> others to understand them. I believe that his speech issues have

> everything to do with his hearing loss. I believe that he needs to

> be reprogramed. Can anyone send me in the right direction? I need

> to know HOW to teach him. Meanwhile, he is losing interest in

> signing, and is becoming even more frustrated than before. Help me

> help him.

[Guest guest]

In a message dated 8/25/2003 3:40:17 PM Eastern Daylight Time, emmalouie@... writes:

One of her ears sticks out alot and appears to be

larger, she always looks in one direction and her head appears to be

flattened at one side. I have tried to alternate her sides and keep

her from laying on her head,but i just dont know what to do, what age

do they give a helmet? Will she need one forsure?

Hi Emma,

Welcome to the group. Has your doctor evaluated your child for torticollis? This is a tight neck muscle that inhibits the child from fully rotating to the left or right, and you may also notice a tilt of the head- with the ear being drawn towards the shoulder. Your daughter sounds very similar to my son, including the ear sticking out (commonly referred to as tort ear) and also the ear being smaller. Our son was cramped inutero- which stunted the growth of his SCM (neck muscle) and also the growth of his ear as it rested on my pelvic bone. You should make an appt. with your ped to discuss torticollis- and also physical therapy- your ped will want to make sure that this is muscular tort and may require an MRI or CAT scan, although some have not had to go that route. My son was dx with severe left tort, but also had plagio that started inutero (squished his head in cramped quarters), where the tort made our repositioning efforts unsuccessful and his plagio worsened. I will attach a few links for you to do some research. Torticollis is very treatable through physical therapy, which will consist of lots of stretching from hopefully a pt, as well as mom and dad- to lengthen or stretch out that tight muscle, allowing your child the "slack" needed to keep his head midline, and/or rotate fully towards the tort side. Keep us posted on how things are going for you, and educate yourself as much as possible. My son was dx with tort at 2 mnths, and you really have good time on your side to start weighing your options and understanding how complex both tort and plagio can be. Keep in mind that repo can be very difficult with a tort child, and the bands/helmets really do help deal with plagio while you can effectively deal with the tort daily. My son was on the high end of moderate/severe right plagio, with facial asymmetry and major ear misalignment- he did great as we got him in a DOC band a week shy of 5 mnths old- wore it till approx. 8 mnths with 90-95% correction, resolved all asymmetry and his ears are perfectly aligned! Hang in there, I know this is a scary time when you first start out, but educate yourself and talk in detail with your Doc now about tort/plagio and keep the group posted on your journey- this is an invaluable support system with collective minds dealing with similar issues. If I can help in anyway, please feel free to email me- also check out www.torticolliskids.org

'mom (dx severe tort @ 2 mnths, formal pt 2x a week 3-10 mnths, plus daily stretches from mom and dad- DOC Band from 5-8 months with 90-95% correction).

http://www.orthoseek.com/articles/congenmt.html

http://www.pedisurg.com/PtEduc/Torticollis.htm

http://www.orthoseek.com/articles/ifs-left.html

[Guest guest]

Hi & welcome to our group:

It sounds like your daughter might also suffer from torticollis, which means tight neck muscles and is a leading cause of plagiocephaly. Have you been able to have her seen by your pediatrician as of yet? You can find a GREAT article released by the AAP in july which is quite helpful, your ped should have a copy of this, but it's helpful for parent's to read as well, and you may want to print it off http://www.aap.org/policy/s0201.html

There's also helpful information at www.plagiocephaly.org/support

You can band your child as young as 3 mos of age but she's still plenty young enough to get results from repositioning. Repositioning is a very difficult task, esp. if your daughter does have torticollis.

Good luck with all of this. Please keep us posted.

Debbie Abby's mom DOCgrad

MI

emmamarie76 <emmalouie@...> wrote:

Hello, my baby is 2 months old and has a strange shaped head, i took her to the hospital for another reason and the doctor told me to get my family doctor to look at my babies head, he said that one ear is more forward than the other and the name for this condition is plagiocephaly. One of her ears sticks out alot and appears to be larger, she always looks in one direction and her head appears to be flattened at one side. I have tried to alternate her sides and keep her from laying on her head,but i just dont know what to do, what age do they give a helmet? Will she need one forsure?For more plagio info

[Guest guest]

Hello and welcome! You will find many helpful heads on this site, glad you are here...

By your description, it sounds like your baby may have plagiocephaly and at two months old, you are tackling the early (which is great). There is a lot of good info at www.cranialtech.com and

www.plagiocephaly.org worth checking out.

The first thing the doctor needs to do is rule out torticollis, which is the muscle tightening condition that would cause your baby to always "look in one direction". Physical therapy and neck exercises/stretching will help resolve this. The doctor should refer you to a pediatric neurosurgeon for a diagnosis on the plagiocephaly so your daugter's severity can be assessed. The neuro may also order x-rays to rule out another condition called craniosynostosis (very rare - premature fusion of fontanels); not to worry though. The x-rays are pretty typical.

At least for the meantime the neurosurgeon may have your reposition your daugther, essentially, you must keep her off the flat spot at all times. This can be tackled at night by rolling a blanket up and keeping it under her shoulder to keep her head off the flat spot. There are other repositioning tricks which others, I am sure will share. Continue to keep her off that side as much as possible!

As far as a helmet goes, it may be too soon to say if she'll need one because it does depend on the severity and the success of repositioning. Many have had great success with repositioning, so much, that no helmet/band was needed. Only a qualified pediatric neurosurgeon can tell for sure. You are so lucky to have "caught" this early to nip it in the bud! I am sure others who know much more than me will chime in, so I will stop here. Welcome, again, and hang in there until you see a specialist... Keep repositioning!

Rhonda

Mom to Collin - DOC Band Grad 2003http://www.collingillespie.com http://www.preciousbambino.com

-----Original Message-----From: emmamarie76 [mailto:emmalouie@...]Sent: Monday, August 25, 2003 3:35 PMPlagiocephaly Subject: helpHello, my baby is 2 months old and has a strange shaped head, i took her to the hospital for another reason and the doctor told me to get my family doctor to look at my babies head, he said that one ear is more forward than the other and the name for this condition is plagiocephaly. One of her ears sticks out alot and appears to be larger, she always looks in one direction and her head appears to be flattened at one side. I have tried to alternate her sides and keep her from laying on her head,but i just dont know what to do, what age do they give a helmet? Will she need one forsure?For more plagio info

[Guest guest]

Hi Emma and welcome to the group! I see you have lots of wonderful

links and replies, so I will wish you luck and I hope to see repo

success at the end of your journey and no band needed.

Dustie, mom to , DOCGrad'03

--- In Plagiocephaly , " emmamarie76 " <emmalouie@s...>

wrote:

> Hello, my baby is 2 months old and has a strange shaped head, i

took

> her to the hospital for another reason and the doctor told me to

get

> my family doctor to look at my babies head, he said that one ear is

> more forward than the other and the name for this condition is

> plagiocephaly. One of her ears sticks out alot and appears to be

> larger, she always looks in one direction and her head appears to

be

> flattened at one side. I have tried to alternate her sides and

keep

> her from laying on her head,but i just dont know what to do, what

age

> do they give a helmet? Will she need one forsure?

[Guest guest]

Hi,

I see you've gotten some great replies already, so I'll just welcome

you to the group! Welcome.

--- In Plagiocephaly , " emmamarie76 " <emmalouie@s...>

wrote:

> Hello, my baby is 2 months old and has a strange shaped head, i

took

> her to the hospital for another reason and the doctor told me to

get

> my family doctor to look at my babies head, he said that one ear is

> more forward than the other and the name for this condition is

> plagiocephaly. One of her ears sticks out alot and appears to be

> larger, she always looks in one direction and her head appears to

be

> flattened at one side. I have tried to alternate her sides and

keep

> her from laying on her head,but i just dont know what to do, what

age

> do they give a helmet? Will she need one forsure?

[Guest guest]

Hi there and welcome to the group!! First of all that is great that

the Dr caught it so early and it perfect time for some repositioing

to work. I am sure I am a little late and others have probably

already give you the links. My son got his DOCband when he was 3

months and 3 weeks old and he is now been in it a month and we are

seeing wondreful correction already. Good luck!

Donna and Xavier DOCband 7/25

--- In Plagiocephaly , " emmamarie76 " <emmalouie@s...>

wrote:

> Hello, my baby is 2 months old and has a strange shaped head, i

took

> her to the hospital for another reason and the doctor told me to

get

> my family doctor to look at my babies head, he said that one ear is

> more forward than the other and the name for this condition is

> plagiocephaly. One of her ears sticks out alot and appears to be

> larger, she always looks in one direction and her head appears to

be

> flattened at one side. I have tried to alternate her sides and

keep

> her from laying on her head,but i just dont know what to do, what

age

> do they give a helmet? Will she need one forsure?

[Guest guest]

can the band come on and off?

djs61111 wrote:

Hi there and welcome to the group!! First

of all that is great that

the Dr caught it so early and it perfect time for some repositioing

to work. I am sure I am a little late and others have probably

already give you the links. My son got his DOCband when he was

3

months and 3 weeks old and he is now been in it a month and we

are

seeing wondreful correction already. Good luck!

Donna and Xavier DOCband 7/25

--- In Plagiocephaly , "emmamarie76" <emmalouie@s...>

wrote:

> Hello, my baby is 2 months old and has a strange shaped head,

i

took

> her to the hospital for another reason and the doctor told me

to

get

> my family doctor to look at my babies head, he said that one

ear is

> more forward than the other and the name for this condition is

> plagiocephaly. One of her ears sticks out alot and appears

to be

> larger, she always looks in one direction and her head appears

to

be

> flattened at one side. I have tried to alternate her sides

and

keep

> her from laying on her head,but i just dont know what to do,

what

age

> do they give a helmet? Will she need one forsure?

For more plagio info

[Guest guest]

What about a baby bjorn or a sling? I noticed it works well with my two. I know you have other kids to take care of so I am not sure if it is an option.

help

well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info