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Kim-

When we put her on Carn-aware she was more alert and hyper but since she has

been on the AEDs she has been sluggish and I welcomed a change. She did

mellow over time. Now she is just like every other typical kid. It is also

nice to see that she is making it to the developmental milestones that she

never made it to. Sedona has alot of cognitive processing problems and this

has really improved them as well as her speech.

-- Re: [ ] new to group

: I hope you don't mind a quick question....and welcome to the group!

When you put your daughter on the Carn-aware...did you notice any negative

side-effects? I tried my son on carn-aware and he went nuts. No,

really...NUTS! He never stopped moving and moving. It was awful. I

took him off the supplement after only 3 days, and I wonder from time to

time if I didn't give him enough of a chance. What did you experience?

Kim

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Hi Yael,

how old is your daughter and what are the other supplements you are

giving her? We have a son (will be 5 years old in May), who is hypotonic

with severe speech delay.

Rivka

yael wrote:

> I'm not , but my daughter has been taking

> Carn-aware for several months with no bad side

> effects. Her speech is really taking off--hard to say

> if it is the Carn-aware or other supplements but we

> think it is helping.

>

> Yael

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: Thanks for the reply, but you lost me with AEDs....what are AEDs?

I think I will try the carn-aware again, but since he starts school

tomorrow...I will wait a while. Thanks again. Kim

---------

Kim-

When we put her on Carn-aware she was more alert and hyper but since she

has

been on the AEDs she has been sluggish and I welcomed a change. She did

mellow over time. Now she is just like every other typical kid. It is also

nice to see that she is making it to the developmental milestones that she

never made it to. Sedona has alot of cognitive processing problems and this

has really improved them as well as her speech.

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Kim-

AEDS are Anti-Epilepsy Drugs. Don't wait to long to start the Carn-aware.

Sedona's educational goals really took off once we started it.

-- Re: [ ] new to group

: Thanks for the reply, but you lost me with AEDs....what are AEDs?

I think I will try the carn-aware again, but since he starts school

tomorrow...I will wait a while. Thanks again. Kim

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  • 2 weeks later...
Guest guest

My son is 4-1/2 years old. He has been in speech thearpy since he was 2 and

when he was 3-1/2 - I was told he has apraxia.

Can you understand your son? Can other people understand him? If so, then he

probably is just going at his own pace. If he is not understandable, I would

think he has apraxia.

My son says a lot of words, but my 9 year old daughter and myself are the

only ones who can understand him mostof the time. He seems to be getting

better with his speech, but he still has a long way to go.

I wish you the best,

God Bless You and your family.

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Hi and welcome,

Please try and talk to your case manager with EI, to try and get

therapy going again. I agree, it is counter productive for him to be

in a class where he is miserable. Were you an active participant in

this group or were parents asked to leave? If that is the case, I

don't know too many 25 month olds who separate easily and with

strangers who are holding him. On top of that, you just moved which

could also explain his reservations. If you can stay with him to

help with the transition I think that would be helpful.

For your own piece of mind, have the dev. ped. exam. Make a list of

all your concerns, all his milestones etc... Does he understand what

you are saying? Does he follow 1 step directions, can he imitate a

word, does he have good eye contact? Can he lick a lollypop, try and

blow bubbles, etc... To be honest even, 40 words at 2 doesn't seem

horrible. Most of our kids were non-verbal at 2. Are they

intelligible or only you understand them in context?

I know there are a few military families on the list. They'll

probably offer guidance on how to help you.

Good luck.

denise

So before you get yourself crazy, have the appointment and take it

from there.Perhaps try and get another opinion if you aren't

comfortable with the first one.

> Hi, I'm and my son Kristopher is 25 mos old and says about 40

> words. He has yet to be diagnosed with anything. I'm in the

> process of getting an appt with a developmental ped at our Naval

> Hospital and I'm just trying to educate myself as much as possible

> in order to advocate for my child. I did have him evaluated at

> 18mos by EI in CT and they seemed to think he was speech delayed

and

> offered speech therapy. He seemed to do well with them coming to

> our home, but then we moved to WA (my husband is in the Navy and

> we've moved 5 times in the last 2 years...he is currently

deployed)

> The state EI program here offered a pre-school class and speech

> therapy (not in home, we live on base) Well Kristopher did not do

> well at all in the class, he was 23 mos at the time and seemed to

> cry half the class...he didn't want to sit, so the teachers would

> try and hold him down and the entire thing just seemed counter-

> productive to me. Soo I pulled him out, well thats when they

> started recommending further evaluations. Well now I'm terrified

he

> will be diagnosed with something, and how can I be sure it's

> the " right " one? If anyone has any suggestions on any tests I

> should ask for, or anything I can do to prepare myself and my child

> for the process, please feel free to let me know what you think. I

> look forward to listening to everyones story and learning as much

as

> I can from this group.

>

>

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Although I took Kristopher out of the pre-school class he is still

receiving speech therapy 1x a week. I did stay in the class with

him and for the most part was the one that tried to make him sit

when he needed to. I know he understood he needed to sit, because

he would go get his little carpet, put it on the floor then run as

fast as he could into this little house they had in the classroom :)

It was when I would stand back for a moment, just to see if

Kristopher would cooperate on his own that the teacher would grab

him. I mean can't a toddler just have a minute? His speech

therapist seems to understand most of what he says. I'd say someone

on the street would probably understand 10 of his 40 words. He

makes up a lot of words for things " Buzz Lightyear " is " Donna " and

he'll argue with my 9yr old if he tries to correct him. He has his

little quirks for sure. Lately, he has been refusing to take off

his jacket or shoes outside of the house, he used to cry if a

stranger even looked at him, now he shows his toys and tries

to " talk " to them, but I'm almost positive I'd have a hard time

leaving him with anyone at this point without him screaming his head

off. He doesn't imitate words, but will imitate gestures and

sounds. He has been trying to say " fish " lately, but it sounds

like " dis " except really nasal. He's VERY active, my oldest told me

last night that it seems like Kristopher is in every room at once.

He can lick a lollipop, has blown bubbles hmm what else..seems to

understand most of what I say. It's just so hard at this age to

figure out what are " red flags " and what is just normal toddler

behavior. I'm praying he will be cooperative with the ped. He did

really well with the last eval, but they came to our house. I have

days where I think he's going to be just fine and just needs a

little time, but am scared I'm going to miss some " window of

opportunity " to get him some help if it turns out he has other

issues. Thanks to all who made it this far. Oh yeah, one more

thing, my EI case manager was also a teacher in that pre-school

class so it seems hard for me to communicate with her at times.

Last time I talked to her she called me " " hehe my name is

. Oh and one more question, I feel tempted to resist any labels

until he is older, but would I have more resources for him if he did

have a diagnosis? Has anyone else struggled with this?

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Hello : I just wanted to say that you sound an awful lot like me!

First, I agree about the red-flags! I never knew (and sometimes now -

dont know) what is normal toddler bahavior and red-flag behavior. And the

endless questions to the experts who know the difference was getting out of

hand. I finally had to sit down with a speech/language pathologist who

did his 2 year AND 3 year evaluation for an " off the record " conversation

about my son .

That therapist sees many, many kids.......all different kinds with many

differenct communication impairments. I see just one kid, mine - and

mom's are emotionally attached! She told me that she can spot within

minutes if there are red-flags going on or not. And she would definitely

tell me if she thought there was something else going on. Have you

already had an evaluation? You may have answered this already...and I

missed it. This therapist/evaluator was wonderful. She answered ALL of

my questions, directly! She never beat around the bush at all....telling

me, " yes, this is a problem and this is what you need to do " .......or " no,

relax, that is ok " .

also has issues with his coat/shoes....it drives me nuts! This

weekend, it was SO nice outside, 60's and 70's like weather, but

had to wear his winter coat....because he was so used to it....even though

he fought wearing his winter coat in fall when the weather got cold. And

after a struggle over the coat, I let him wear his winter coat outside for

10 minutes, then changed him over to a spring coat. But these behaviors

is what gets to me the most.....MORE than his speech issues. He has come

so far in just one year with his speech that I do think - OVER TIME - he

will speak great! But those behaviors are what gets to me the most.

Finally, I would not fight the diagnosis at this point. From what I have

read, sometimes the diagnosis changes as the child changes. Get him into

all the services you need, as much and as often and with the therapists

that he likes and you like.

Take care and good luck.

Kim

>He's VERY active, my oldest told me

>last night that it seems like Kristopher is in every room at once.

>He can lick a lollipop, has blown bubbles hmm what else..seems to

>understand most of what I say.  It's just so hard at this age to

>figure out what are " red flags " and what is just normal toddler

>behavior.  I'm praying he will be cooperative with the ped.  He did

>really well with the last eval, but they came to our house.  I have

>days where I think he's going to be just fine and just needs a

>little time, but am scared I'm going to miss some " window of

>opportunity " to get him some help if it turns out he has other

>issues.  Thanks to all who made it this far.  Oh yeah, one more

>thing, my EI case manager was also a teacher in that pre-school

>class so it seems hard for me to communicate with her at times.

>Last time I talked to her she called me " " hehe my name is

>. Oh and one more question, I feel tempted to resist any labels

>until he is older, but would I have more resources for him if he did

>have a diagnosis?  Has anyone else struggled with this?

>

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Thanks, your message really made me feel better, especially about

the jacket issue :) Hopefully he'll get over it by this summer!

>

> also has issues with his coat/shoes....it drives me

nuts! This

> weekend, it was SO nice outside, 60's and 70's like weather, but

> had to wear his winter coat....because he was so used to

it....even though

> he fought wearing his winter coat in fall when the weather got

cold. And

> after a struggle over the coat, I let him wear his winter coat

outside for

> 10 minutes, then changed him over to a spring coat. But these

behaviors

> is what gets to me the most.....MORE than his speech issues. He

has come

> so far in just one year with his speech that I do think - OVER

TIME - he

> will speak great! But those behaviors are what gets to me the

most.

>

> Finally, I would not fight the diagnosis at this point. From

what I have

> read, sometimes the diagnosis changes as the child changes. Get

him into

> all the services you need, as much and as often and with the

therapists

> that he likes and you like.

>

> Take care and good luck.

>

> Kim

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Hi Ken,

Welcome to the group although I am sorry for the reasons that brought

you here. Yes, many of us have the " you look fine " look. I guess it's

a blessing and a curse.

The one thing I wonder is whether she has fully accepted what is

going on physically. Is she resentful because she thinks you feel she

can't take care of things herself? Do you find yourself

overcompensating and doing more than you used to? In regard to being

open to others sometimes it's easier to talk to people that are not

immediately involved in the situation.

Your sex life could be based on many things, your wife not feeling

like a total woman anymore, her body hurting from Lupus and RA,

reactions to medicine, etc. I wouldn't try and take it too personally

and broach the topic with her when neither one of you is frustrated

or too emotional. If someone would have told me 7 years ago that I

would turn down advances from my wife I would have said they were

crazy. It's amazing though how much of a toll these diseases can have

on a person physically and emotionally. There was a good article in

the lastet issue of Arthritis Today about intimacy. You should try

and get a copy.

I hope that you both are able to discuss these issues and cope with

them. These diseases are horrible in so many ways and one learns how

important a strong support group can be.

All my best,

Alan

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Welcome, Ken!

I am very sorry to read that you and your wife are having such

difficulties. Problems such as yours are very common for couples who are

trying to cope with the challenges chronic illness presents.

Does your wife know how you are feeling about things? For example, would

anything you told us about the situation surprise her? The more open you

both can be about how you perceive the situation and what you would like

to see change, the better.

Have you considered counseling? I strongly recommend it. There are

therapists who have experience helping couples who are trying to deal

with chronic illness.

Although it is very difficult to overcome for many, even our physicians,

please do everything you can to break the association of looking good

with feeling good. A very smart fellow I know asks his loved one: " You

look terrific, but how do you feel? "

[ ] New to group

> Hello guys, I am new to the group but not an RA sufferer. My wife

> has lupus and RA. I know she suffers a lot and will get a lot out of

> this group as well. To be honest, the reason I joined the group is

> because while I try hard to understand, she does have the " you look

> fine " look. But the truth is, there seems to be a lot of adverse

> affects on us as a couple. First is her pushing me away, telling me

> that I do too much for her. I try to be very attentive and

> anticipate her needs, but she has begun to resent this. It has hurt

> me very much to have to back off like this, because this is a

> primary expression of love for me. All the while, she seems very

> open to others. This is very frustrating to me. And then the sex

> life is nill. I usually supress my feelings on this, but at times it

> is very difficult, given her " you look ok " look. Then when I do

> finally say something, it creates a huge problem, in which I feel to

> be made out to be a bad guy. I need help now, any advice you can

> give as to how I can deal with these problems, or understand them

> better. I don't want to be an extra burden on her, but I also want

> my marriage to be as much as it can be.

>

> Thanks,

> Ken

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Hi Ken,

So good to hear from a husband who is genuinely concerned about his

wife. I hope she will join our group too, as I have gotten some

wonderful support and feedback. I am in the process of being

diagnosed, though they're not actually sure what just yet. But I

have been in considerable pain and discomfort for nearly one year.

My husband and I are a " mature " couple (translation: he is 66 and I

am 56.) As he has had some health problems in the past year

(Parkinson's disease) I hesitated to burden him with my problems and

tried to tough it out. But I finally had to tell him how much I

hurt, and how much it hurt me to not be able to do things myself. We

have achieved a good communication, especially since he sometimes

needs help with things, so that we ASK each other when we need help.

If I am too tired or in too much pain to do the laundry, I will ask

him, and he happily does it. Sometimes all we both need is to sit on

the couch and be close to each other. But all this has greatly

improved the overall communication in our marriage and made us more

empathetic rather than resentful. Sometimes it means more to me to

do something myself even if it hurts, just to feel more in control.

My best to both of you,

Judi

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Welcome Ken. It¹s admirable that you care enough to try to help your wife.

I am a very independent person and have been know to do stupid things in

order to do it myself.

It¹s hard to admit that things we used to do so easily now are difficult and

cause pain.

It¹s only in the last year or so that I¹ve come to terms with the fact that

I just can¹t do things anymore.

Maybe you should step back a little and see if she will ask for help when

she needs it.

As far as the lacking love life, it¹s hard to have desire when it¹s painful

to move. We learn to take

advantage of the good days and snuggle on the bad ones. Here are some

articles that may help:

Sex and Arthritis

http://www.orthop.washington.edu/arthritis/living/sex/01

Guide to Intimacy with Arthritis

http://www.arthritis.org/resources/Relationships/Intimacy/flares.asp

a

> Hello guys, I am new to the group but not an RA sufferer. My wife

> has lupus and RA. I know she suffers a lot and will get a lot out of

> this group as well. To be honest, the reason I joined the group is

> because while I try hard to understand, she does have the " you look

> fine " look. But the truth is, there seems to be a lot of adverse

> affects on us as a couple. First is her pushing me away, telling me

> that I do too much for her. I try to be very attentive and

> anticipate her needs, but she has begun to resent this. It has hurt

> me very much to have to back off like this, because this is a

> primary expression of love for me. All the while, she seems very

> open to others. This is very frustrating to me. And then the sex

> life is nill. I usually supress my feelings on this, but at times it

> is very difficult, given her " you look ok " look. Then when I do

> finally say something, it creates a huge problem, in which I feel to

> be made out to be a bad guy. I need help now, any advice you can

> give as to how I can deal with these problems, or understand them

> better. I don't want to be an extra burden on her, but I also want

> my marriage to be as much as it can be.

>

> Thanks,

> Ken

>

>

>

>

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  • 3 weeks later...
Guest guest

Hi Kristy, Welcome.

's plagio was noticed at 13 weeks, she also has torticollis

which caused her plagio. With the tort she had limited range of

motion in her neck causing her to always hold her head in one spot.

We did repositioning and had great results. Ella is so young I think

you will be a repositioning success story.

My advise is put Ella on her tummy several times a day. You can

increase the time she is on her tummy as she gets used to it. She

may cry a little but don't worry she will get used to it. It will

help strengthen her body, tummy time is a baby's exercise. Keep

working on getting her on her tummy often through the day. Tummy

Time is a must!

Try not to have her in baby swings, bouncy seats or carseat

carriers. Carseat when you are driving, but don't leave her in one

of those kinds that you carry around the mall when you are shopping.

When you feed her try to hold her head so you are not putting

pressure on the flat side.

If you don't see results from repositioning within a few weeks, Not

saying it will be corrected but you should see improvement, Then talk

to your Ped.

Take lots of photos of her head. Because you see her every day it

maybe hard to know if you are getting correction.. Take weekly

photos. If she have hair, take the photos after bath time while the

head is still wet, that way you can see the shape clearly.

Check out this site for repositioning info:

http://www.cappskids.org/CAPPSRepositioning.htm

I don't know about the sleep positioner. I used Air Flow Sleep

Positioner By The First Years. You can order in on line from

Amazon.com I like this one because as the baby begins to roll they

can roll out of the others. The Air Flow one has high hard sides

that the baby can't roll over.

I live just west of Chicago. I can't say that I know of anyone else

on the BB from Australia, you just may be the first one.

I wish you the best and please keep us updated on how the

repositioning is going.

God Bless,

Heidi-SAHM to 7-1/2, 4-3/4 (Apraxia, DSI) 12

months (VUR, tort/Plagio-DOCbandit 2/14/03 and FTT)

> Hi everyone,

>

> My name is Kristy and i am new to the group! I have a nearly 8 week

> old baby girl called Ella who has mild plagiocephaly.

>

> When Ella was about 3 weeks old, we noticed that one side of her

> forehead was becoming more prominent than the other (it had always

> been that way since she was born, but we thought it would go) so we

> took her to the GP as we thought there was something wrong with her

> brain?? The GP said it was nothing to worry about and just to

mention

> it to the paediatrician at the 6 week check up.

>

> Last Thursday we went for her check up and the Dr told us that Ella

> has mild plagiocephaly and to start positioning her with alternate

> sleeps and then he would review when she is 4 months old as she may

> need a helmet and they have to check if the skull had fused because

> this would be bad.

>

> As you can imagine i was worried - i had never heard of

plagiocephaly

> before - and so i started to read up on it. The Dr didnt seem very

> interested or concerned so his information wasnt very

forthcoming....

> i found your great support website and have learned so much.

>

> I am trying the positioning techniques as best i know how? and if

> anyone has any tips then they would be greatly appreciated :) i

hope

> that if i work at this then things will have improved by her

> appointment in 2 months time....

>

> I am sorry for rambling on in my very first message...i am so

worried.

>

> There is not much Australian information on plagiocephaly? Is there

> anyone else here who is from Australia?

>

> My last question (for now :)) is that i saw on the website a baby

> positioner that looks perfect for us by Graco. It is called the

Graco

> Curved Back Sleeper (it is the one with the head support thing). I

> cant get it here in Australia and no one seems to be able to order

it

> for me.. Does anyone know if i can order this product online as the

> Graco website doesnt seem to let you order???

>

> Anyway, i hope to get to know you all and your families! Thankyou

for

> listening. My husband and i appreciate it!

> Take care

> Love Kristy

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Hi Kristy and welcome to the group. What a pretty little name, Ella, love it!! As far as the back sleeper, I think that you will hear the same from everyone, it didn't work. I started to use it the day that we came home from the hospital, until Jeffry was about 5 months old, and then he started to roll over, then it wasn't any good anymore. It did not work for us. If you are interested in yet, it is carried at Target, or Target.com. Best wishes and welcome. Heidi, mom to Jeffry, local helmet grad, MN New to Group Hi everyone,My name is Kristy and i am new to the group! I have a nearly 8 week old baby girl called Ella who has mild plagiocephaly. When Ella was about 3 weeks old, we noticed that one side of her forehead was becoming more prominent than the other (it had always been that way since she was born, but we thought it would go) so we took her to the GP as we thought there was something wrong with her brain?? The GP said it was nothing to worry about and just to mention it to the paediatrician at the 6 week check up. Last Thursday we went for her check up and the Dr told us that Ella has mild plagiocephaly and to start positioning her with alternate sleeps and then he would review when she is 4 months old as she may need a helmet and they have to check if the skull had fused because this would be bad.As you can imagine i was worried - i had never heard of plagiocephaly before - and so i started to read up on it. The Dr didnt seem very interested or concerned so his information wasnt very forthcoming.... i found your great support website and have learned so much.I am trying the positioning techniques as best i know how? and if anyone has any tips then they would be greatly appreciated :) i hope that if i work at this then things will have improved by her appointment in 2 months time.... I am sorry for rambling on in my very first message...i am so worried.There is not much Australian information on plagiocephaly? Is there anyone else here who is from Australia?My last question (for now :)) is that i saw on the website a baby positioner that looks perfect for us by Graco. It is called the Graco Curved Back Sleeper (it is the one with the head support thing). I cant get it here in Australia and no one seems to be able to order it for me.. Does anyone know if i can order this product online as the Graco website doesnt seem to let you order???Anyway, i hope to get to know you all and your families! Thankyou for listening. My husband and i appreciate it!Take care Love Kristy

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Hi Kristy =) This is a long posting, sorry =(

I am in a similar situation to you. My son is almost 4 months old, and I had noticed the plagio around 8 weeks. My son's is mainly from sleeping with his head in the same position because he favors turning his head to the left (due probably to tight or shortened neck muscle or torticollis). I am bound and determined to do this without the helmet if I can. I found a great website about a success story with repositiong. I don't have the exact website, but if you type " 's Plagio Pages" in a search, it will probably come up. The thing I changed most is his sleeping position. He HATES to sleep on his side, but I have forced him to sleep on his side with a sleep positioner (I alternate which side each time he wakes up). I am already seeing very slight improvement after a week. I also try to keep him off his back as much as possible during the day. Since he can hold his head up pretty well, I put him in an exersaucer with a towel in front of him to keep him wedged in there. This might be an option for you a few weeks down the road when Ella can hold her head steady. I limit time in the swing, carseat, and stroller. I also put the bouncy/rocking seat in the closet because the way he would sit in it would cause a lot of pressure on the flat spot. I am less tempted to put him in it if it is in the closet. I also do neck exercises that were recommended by his pediatrician. This helps to loosen up the neck muscle so that he doesn't favor one side over the other. If I do have him in the carseat, stroller, or swing I put a rolled up towel on one side of his head to prop his head off of the flat spot. I also use something similar to the Noggin Nest when he is in his carseat to keep pressure off of the fflat spot. Tummy time is very important too! I know they hate it at that age, but just keep doing it several times a day for a few minutes at a time.

I will tell you that Josh's first pediatrician was very casual about it at 8 weeks and merely suggested putting things of interest on the opposite side of his flat spot so that he would turn his head and keep off of the flat spot. That is also a good technique, but I believe he should have informed me better about plagiocephaly. Everyone kept telling me to not worry, it will round out on its own. Well, it only got worse. If I had been agressive at 8 weeks, he would already be much better by now. My advice is be proactive now. Your daughter is at a great age to see correction, probably without a helmet. It is worth the extra work to keep repositioning her. I have found that family and friends who are willing to help me during the day by giving me a break (they come over and play with him or hold him) helps me keep my sanity. Believe me, a few weeks and you will probably see some inprovement. As far as the positioner, try babiesrus.com They seem to have everything! The positioner could make all the difference!

I wish you all the best with this! Keep us updated with Ella's progress. And if you get discouraged, write the group for encouragement. It helps to have friends in the same predicament.

Take care,

(Josh's mommy)

Kristy <tuliet@...> wrote:

Hi everyone,My name is Kristy and i am new to the group! I have a nearly 8 week old baby girl called Ella who has mild plagiocephaly. When Ella was about 3 weeks old, we noticed that one side of her forehead was becoming more prominent than the other (it had always been that way since she was born, but we thought it would go) so we took her to the GP as we thought there was something wrong with her brain?? The GP said it was nothing to worry about and just to mention it to the paediatrician at the 6 week check up. Last Thursday we went for her check up and the Dr told us that Ella has mild plagiocephaly and to start positioning her with alternate sleeps and then he would review when she is 4 months old as she may need a helmet and they have to check if the skull had fused because this would be bad.As you can imagine i was worried - i had never heard of plagiocephaly before - and so i started to read up on it. The Dr didnt seem very interested or concerned so his information wasnt very forthcoming.... i found your great support website and have learned so much.I am trying the positioning techniques as best i know how? and if anyone has any tips then they would be greatly appreciated :) i hope that if i work at this then things will have improved by her appointment in 2 months time.... I am sorry for rambling on in my very first message...i am so worried.There is not much Australian information on plagiocephaly? Is there anyone else here who is from Australia?My last question (for now :)) is that i saw on the website a baby positioner that looks perfect for us by Graco. It is called the Graco Curved Back Sleeper (it is the one with the head support thing). I cant get it here in Australia and no one seems to be able to order it for me.. Does anyone know if i can order this product online as the Graco website doesnt seem to let you order???Anyway, i hope to get to know you all and your families! Thankyou for listening. My husband and i appreciate it!Take care Love KristyFor more plagio info

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  • 1 month later...
Guest guest

Welcome, Fletchiek!

I'm sorry that you've had so many surgeries and troubles and that you

are still in so much pain. I hope when you see the neurologist again, he

can help you. Are you getting help for your depression?

[ ] New to group

> Hello everyone-I am new to your group and wanted to introduce myself

and post a few things about myself. I was diagnosed with RA a year ago

in April. In Jan. I had noticed that my rings were getting so tight that

I thought I better stop wearing any. I didn't realize they had gone up 4

ring sizes. I had been diagnosed with Raynalds many years ago I believe

1986. Back then I smoked and was told to stop smoking ASAP. I haven't

smoked since 1986. It was around that time that I had to have 3 Carpal

Tunnel surgeries because my hands (especially the right one) were really

bad. After I had the surgeries done they seemed pretty good for about 6

yrs. except I was always going back to the doctor and get a refill when

the weather here started to get cold and damp they would turn the oddest

colors. In 1994 I started having numbness that never went away in my

right thumb. I was concerned and my hand surgeon decided to get me into

a neurosurgeon.I had a myelogram and CT scan done and found out that I

had ruptured a cervical disk and that if I didn't have something done it

was going to cause permanent damage. I had an anterior bone fusion in

July over the 4th of July weekend, They used bone from the bone bank. I

was in awful pain when I woke up in recovery. Needless to say my surgeon

had no bed side manner. About 8 months passed and I felt awful

especially my shoulder blades and right hand. The same neuro surgeon did

a myelogram CT scan, anterior bone fusion from the bone bank. This time

when I woke up I was not in as much pain as before so I thought it was

cured. I also found out that I had DDD and not to expect my spine to be

very good the older I got. In 1998 I was having a terrible time with my

lower back and the upper cervical area again. I had the same tests and

this time I had to sign a release to use my bone with a titanium plate

and screws. I woke up in recovery on April 21,1999 and have been in pain

every hour of every day since. Now with the arthritis and the

degenerative disk disease I am in pain enough where I do go to a pain

mangement doctor who is the best doctor. I also have an internist now

instead of just a family doctor.The pain management doctor and internist

work together to be sure my liver is ok,blood pressure and every other

thing concerning my RA to hypertension. Last Friday I went back to my

neurosurgeon I have had an awful pain in my left arm this time that

never goes away and effects my left hand, shoulder blade, arm and neck,

I can tell it is more then likely a nerve being pinched possibly by

another rupture or bone spur. I had some normal xrays got all the way to

his office only to find out he had an emergency. So I will end this

email here. I get depressed so easily because my hands hurt so bad some

days and my ankles, elbows and feet. I have given up a very good job

because my medication wouldn't allow me to perform my job in accounting,

I hope everyone is painfree tonight. You are in my prayers and I will

post again soon

> Fletchiek

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Fletchiek,

I understand what you mean that others don't get it. My family still thinks

it's all in my head because the Rheumatoid Arthritus causes deformities and

I don't have any deformities. My family lives 60 miles away so they don't

see me on a daily basis. This is a wonderful group, you will get a lot of

support and lots of information to help you understand this disease.

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  • 3 weeks later...
Guest guest

Welcome, Noreen!

Glad you found us. Sorry about your RA diagnosis, but I understand that

at least knowing what the problem is is often a big relief.

Sorry, too, about your father.

I would see a rheumatologist immediately. You're right about the current

recommendations. Preventing damage is key. Also, joint changes may occur

in the absence of an elevated sed rate.

Hope you like it here, and I am looking forward to learning more about

you.

[ ] New to group

> I was just recently diagnosed with RA. I have had aches and pains for

years,

> and actually felt somewhat relived to have an actual Dx. I'm 48 years

old,

> but just recently have been having problems severe enough with my

hands to

> make me unable to do things sometimes. (Like type!)

> I'm quite aware of what RA can do. My dad was disabled at 55 from it.

He had

> both knees replaced, a hip, his wrists and feet surgerically repaired.

He

> also died at the age of 72 from emphysema, but, I wonder if that may

have

> actually been his

> arthritis too, with lung involvment.

> I'm really not scared about my future. I know there are new and better

> medications out there.

> So far, I don't have any joint damage on Xray, and although stiff and

achy

> every day, I only have " bad days " like every week or two. My physician

> prescribed Rx strength naprosyn, since I'd been taking 2 Aleve twice a

day

> for several years anyway. He suggested my next step is a

rheumatologist.

> I know I'm not bad yet, but current literature out there seems to

recommend

> getting advice and treatment early to prevent further damage.

> Should I ask to be referred to the rheumatologist, or wait until my

sed rate

> starts to climb? (so far it is only a little elevated on bad days.

oh, I

> work in a doctor's office lab, so I can do sedrates any time I have

the

> urge.)

>

> Thanks for listening, and for any advice you have out there.

>

> Noreen Saukko

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Guest guest

Welcome, Noreen. Glad to have you join us, sorry for the reasons. You will

find this a great group to belong to as it becomes just like a second family.

Feel free to join right in and you will get to know everyone is a real short

time. Whine if you want, share if you want, emphasize if you want,

vent.......cry......share the good times and the bad......there is always

someone who will online to commiserate with you. Our moderator and owner are

tops and always there to answer questions and do research for answers they do

not readily have available. (besides they are great women to know). Our family

consists of many women and a few men and you won't find a better bunch to be

associated with.

We are in the beginning stages of planning a get together for all that can

travel just to meet each other and put a face to the words we exchange everyday.

Where are you located? Some places that have been thrown out

are........Florida.......Las

Vegas........Poconos........NYC....DC....Atlanta...........Georgia.........Pacif\

ic Northwest (WA and Portland areas particularly).........put your input into

the mix and see how this developes,,,,,,,,,we are going to have one giant

talkfest!!!!!!!!!!!!

Guess what, I think you are eligible for the '49er division of the RA-support

group. I'll let the others fill you in on that as I'm looking back on 49 for a

good many years and no longer eligible unless they decide to count anniversaries

of said year.

Take care........

Remember you are welcome and will always be in my prayers for a better day. You

have made the first step to a better day by just joining our family here.

Jan in CA +/:=)

Noreen Saukko <nsaukko@...> wrote: "

" ...............I'm 48 years old,............... "

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Thanks for the welcomes. Hope to be able to contribute as well as learn from

this group.

I'm located in Northern Minnesota, about half way between Duluth, and the

Canadian border.

OK, what's a 49ers divison?

Noreen

Re: [ ] New to group

Where are you located? Guess what, I think you are eligible for the '49er

division of the RA-support group. I'll let the others fill you in on that as

I'm looking back on 49 for a good many years and no longer eligible unless they

decide to count anniversaries of said year.

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Guest guest

Welcome Noreen. I have to agree with that seeing a rheumy is a good

idea. Early treatment can slow damage. I've read that sometimes early

erosion isn't visible on x-ray but can be seen on MRI's. I'm glad you're RA

has been mild and manageable and hope it never gets as bad as your dad's.

a

> I was just recently diagnosed with RA. I have had aches and pains for years,

> and actually felt somewhat relived to have an actual Dx. I'm 48 years old,

> but just recently have been having problems severe enough with my hands to

> make me unable to do things sometimes. (Like type!)

> I'm quite aware of what RA can do. My dad was disabled at 55 from it. He had

> both knees replaced, a hip, his wrists and feet surgerically repaired. He

> also died at the age of 72 from emphysema, but, I wonder if that may have

> actually been his

> arthritis too, with lung involvment.

> I'm really not scared about my future. I know there are new and better

> medications out there.

> So far, I don't have any joint damage on Xray, and although stiff and achy

> every day, I only have " bad days " like every week or two. My physician

> prescribed Rx strength naprosyn, since I'd been taking 2 Aleve twice a day

> for several years anyway. He suggested my next step is a rheumatologist.

> I know I'm not bad yet, but current literature out there seems to recommend

> getting advice and treatment early to prevent further damage.

> Should I ask to be referred to the rheumatologist, or wait until my sed rate

> starts to climb? (so far it is only a little elevated on bad days. oh, I

> work in a doctor's office lab, so I can do sedrates any time I have the

> urge.)

>

> Thanks for listening, and for any advice you have out there.

>

> Noreen Saukko

>

>

>

>

>

>

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Guest guest

Hi Kim & welcome to our group!!

We've heard of Danmar Products in the past in our group but the helmet you're describing sounds different than others I've heard about. Is the helmet exterior hard with foam padding inside? The foam piece on the outside you're describing sounds different.

It does sound like his headshape could be changing from your description, often in the beginning stages of improvement the head appears to be bumpy/lumpy.

Please don't feel guilty about this. The main thing is does not mind his helmet and it should help him out :)

Welcome again, keep us posted on his progress. If you have any pictures of in his helmet we'd love to see em.

Debbie Abby's mom DOCGrad

MI

kskoob <Teachrok@...> wrote:

Hi. My son is 6 months old and has been in a helmet for 3 weeks. I noticed his flattened head at around 4 months, I brought it up to our pediatrician at our 4 month check up and she agreed it was plagiocephaly and referred us to a specialist. We live in NC and the helmet we got is not the starband or DOC band it is made by Danmar Products. The way I understand this helmet to work is that is just keeps from rolling onto the one side of his head that is flattened. There is a piece of foam (looks like a bar of soap) velcroed to the back of his helmet on the left side to keep him from rolling his head in that direction. Anyway, my question is that if anyone has a helmet similar to this how long did it take to see results? The ot told us we would see results within a week or two, but I haven't noticed much change. There is a place on the bottom of his head that has popped out and created a ridge. Is this what is suppose to happen. I have felt a lot of guilt about having to wear this helmet, so I am probably just being paranoid. I just want it to work, so he can have a beautiful round head. is such a happy and easy baby and he has handled wearing the helmet wonderfully. Thanks for listening- any input would be appreciated.Kim mother to (6 months) banded 5/23

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Kim, HI there and welcome. I don't recall ever hearing of this band

but the theory sounds great!!! My daughter was banded with an

Active band at 8.5 months of age and we didn't notice the correction

until the ortho pointed it out to us. may be recieving

correction and because you look at it everyday, can't tell. How

often does go for adjustments? Is this helmet a clear or

colored device? Is it hard or soft all over? Sorry for all the

questions, I was just thinking that this molding device sounds

interesting.

Dustie, mom to , DOC Grad '03

> Hi. My son is 6 months old and has been in a helmet for 3

> weeks. I noticed his flattened head at around 4 months, I brought

it

> up to our pediatrician at our 4 month check up and she agreed it

was

> plagiocephaly and referred us to a specialist. We live in NC and

the

> helmet we got is not the starband or DOC band it is made by Danmar

> Products. The way I understand this helmet to work is that is just

> keeps from rolling onto the one side of his head that is

> flattened. There is a piece of foam (looks like a bar of soap)

> velcroed to the back of his helmet on the left side to keep him

from

> rolling his head in that direction. Anyway, my question is that if

> anyone has a helmet similar to this how long did it take to see

> results? The ot told us we would see results within a week or two,

> but I haven't noticed much change. There is a place on the bottom

of

> his head that has popped out and created a ridge. Is this what is

> suppose to happen. I have felt a lot of guilt about having

to

> wear this helmet, so I am probably just being paranoid. I just want

> it to work, so he can have a beautiful round head. is such

a

> happy and easy baby and he has handled wearing the helmet

> wonderfully. Thanks for listening- any input would be appreciated.

> Kim mother to (6 months) banded 5/23

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