[Guest guest]

Hi Carol,

It sounds from the Dartmouth Hitchcock reference that you are in NJ or

nearby, Maine or VT Maybe? If so, I suggest Dr. Rob Wharton, a

developmental pediatrician at Spaulding Rehab in Boston and his partner,

Dr. Levine who is the psych member of the team. The are experts on

speech related issues, as well as seeing many kids with PDD, and Dr Levine

has a speciality also in syndrome, Dr. Wharton a Prader-Willi

specialist.

My son has serious gastro issues, as well as the ones most people list on

this board, he has autism, Tourette's, OCDs and psoriasis. Dr. Wharton was

able to look at the total child for me and help coordinate treatments, also

good with letters needed for school programs, etc.

The only problem will be getting an appointment. he has been getting

treatment for cancer the last year (and is doing well) but is working a

somewhat reduced schedule. Still, if you are within 125 miles of Boston,

this is whom I suggest.

Regards,

Judy

[Guest guest]

Carol,

Thanks for the info on the bowel problems! is exactly the same as you

described. It's so nice to have an explanation!

~~

[Guest guest]

Carol, meant to write NH, not NJ....that's too far!

Judy

[Guest guest]

i kept seeing people talking to kathy, i didn't think it was me!!i am feeling

just the same as i did before prednisone, are you just supposed to stop like

that? i know it was a very small dose 5mg 1x a day for 7 days. they want me

to start it again about the 24th so it will be in my system for the next

remicade infusion on the 28th. i can't believe it is that far away. also at

work they told me they ran my fmla time concurrent with my previous medical

leave and i am not eligible for fmla time until january. this does not seem

right to me. so now after my surgeries and i return to work i have no time

left, no fmla, so they can fire me when i miss time?!?! this makes me very

nervous. anyone else have this problem?? kathy in il

[Guest guest]

i just wrote the dept of labor about my fmla time. i'll let you know what

their response is. also sorry if i don't sign off at the end. i am still used

to having my signature set up. my aol is still down and i access my mail thru

my mom as a guest. i keep forgetting that i doesn't work while being a guest.

thanks kathy in il

[Guest guest]

Hi Kathy,

I had the same problem. The FMLA does run concurrent with sick tine/leave.

Right now, they have me on long term disablity but after 3 mos on that, my

company can terminate you. That is why I am trying like heck to go in to

work, we need the benefits so badly. Last week I was only in work for 2

hours, due to the severe pain in my left knee. The ortho thinks that MAYBE

he didn't put a big enough spacer in the initial tkr & my knee is unstable

due to that & nerves are getting caught in the excess space when I walk. So

now I am in a knee brace, elevating the knee & ice packs. THIS is why I had

the surgery done, so I wouldn't have to go thru this. I am so very upset

right now in addition to everything else that is going on. I will be back at

trying to go to work tomorrow am & then I see the pulmonologist, then i see

the back ortho for spinal stenosis/herniated discs on Wednesday to see if I

can get another series of epidurals & finally on Thursday, I see the knee

ortho to see what the next move is on this knee. I really don't know how

much longer my company is going to put up with this either. They pay me for

the hours that I work, then send me a disability payment once a month & I pay

all benefit premiums out of pocket. Not great, but it is something.

Hope you have a nice weekend.....

Love,

Deb

[Guest guest]

that just doesn't seem fair. why use 2 benefits at once? why bother having

fmla then? i used to use it day by day to save my job when i couldn't make it

in. i could see if the didn't offer short term disability. or if you took it

to care for another family member, but i really don't get how they can do 2

disabilities at once. what is the sense? i must be hgaving some bad reactions

or something here. i feel like i am going to blow at any minute. walking the

dog someone has a bag of mcdonalds just thrown on the sidewalk in front of

the house. why can't they throw it away?? even if it wasn't my garbage in

front of my house i'd still pick it up. i am walking down the street yelling

that people are slobs!! next door hey had a party yesterday and there is

broken glass in the street. i even chased my son and friend out of the house.

i am being a total bitch and i don't know why. i started taking the

prednisone right as i was to get my period, which did not happen. i don't

know if big time pms. my friend called me this morning and said i sounded

like i was crying. i wasn't but ok i have now. i have no clue what is wrong

with me. could it have been the earlier comments about going to the county

fair. what's the sense. i can't walk. i said what will i do in 10 minutes

when i can't walk anymore. sit down and have a gyros, or a waffle cone.

great... who's buying?!?! i's the same shit different day. 7 days a week. my

son has found relief from his knee with my ultram. he ran out of the samples

yesterday. i went to fill the script and of coarse it's an expensive one, so

not cholestrol, buspar, zyrtec for me. gotta make sure mortgage and rent are

paid first. should have a date on dan's surgery tomorrow. then i will try and

schedule mine around his. this is not going to be fun. sorry i am so long

winded. i just need to vent. i can't take it anymore. none of my dr's will

shoot me. i have asked many times. they just kinda laugh it off. hope someone

is having a better day. kathy in il

[Guest guest]

Hi Angie,

There is probably not a mommy or daddy here who cannot relate to what you're

feeling! I couldn't believe it when I heard that my daughter was going to

have to wear a plastic helmet for a minimum of 3 months!!! I was not thrilled

with the idea, but at that point I was just very, very relieved that someone

agreed with me that there was something wrong with her head and that help was

available!! She wore a plastic locally made helmet for just over 5 months and

we saw good improvement. Such a small, small drop in the bucket in the grand

scheme of things!!

You have come to the right place. There are over 800 members here most of

whom have been through or are currently going through exactly the same thing

you are! This group is an outstanding source of advice, support and

friendship. If you wouldn't mind letting us know where you are from, there

may be someone in the group who uses the same ortho or the exact same product

that you use!

I hope you will stick with us and share more of your story. I'm glad you

found us and we are here for you!

Marci (Mom to )

Oklahoma

[Guest guest]

Angie,

Thanks for the additional information. I felt the same way you do about this

group. At the beginning of 's treatment I felt very confused, stressed,

guilty, mad and worst of all ALONE!! This group changed all of that and

turned the whole thing into a more positive learning experience. I hope we

can do that for you as well.

Hopefully there is someone else in the group from your area!

Marci (Mom to )

Oklahoma

[Guest guest]

--

Hi Marci,

Thank you so much for responding so quickly. I'm so glad to hear

that 's head shape improved! It's stories like yours that I'm

sure will help me to better understand our experience. We are from

Fishers, Indiana which is a suburb just north of Indianapolis.

's plastic surgeon is Dr. ph Fata. He was fitted for a

cranial molding helmet at Advanced Ortho Pro in Indianapolis. He

will continue to see both doctors throughout his treatment. Thanks

again for responding!

Angie

Indianapolis

- In Plagiocephaly@y..., marcisch@a... wrote:

> Hi Angie,

>

> There is probably not a mommy or daddy here who cannot relate to

what you're

> feeling! I couldn't believe it when I heard that my daughter was

going to

> have to wear a plastic helmet for a minimum of 3 months!!! I was

not thrilled

> with the idea, but at that point I was just very, very relieved

that someone

> agreed with me that there was something wrong with her head and

that help was

> available!! She wore a plastic locally made helmet for just over 5

months and

> we saw good improvement. Such a small, small drop in the bucket in

the grand

> scheme of things!!

>

> You have come to the right place. There are over 800 members here

most of

> whom have been through or are currently going through exactly the

same thing

> you are! This group is an outstanding source of advice, support and

> friendship. If you wouldn't mind letting us know where you are

from, there

> may be someone in the group who uses the same ortho or the exact

same product

> that you use!

>

> I hope you will stick with us and share more of your story. I'm

glad you

> found us and we are here for you!

>

> Marci (Mom to )

> Oklahoma

[Guest guest]

my shoulders hurt alot too. i could not stay in bed this morning. i ached. so

i got up started some housework, walked the dog before it got too hot.

already at 99 at 7:30am. stripped and made my bed and again my son had to

bring me pain pills and an ice pack. you think i'd learn, but what else can

you do. housework needs to be done. i pulled some weeds last night just

before sundown. i have a jungle out there. most of it i just leave and tell

my friends i am having a natural garden this year. some do have pretty

flowers!!! kathy in il

[Guest guest]

Hi

Thank you so much for the support...I keep looking for that door that is

going to open.....so far it as just been plain rotten.!!!Between the disease

and him, I was wondering what could happen next...and guess I should not

have done that as I had my hair permed on Monday and because the stylist

failed to wash the perm solution out completely...it continued tyo process

in my hair..It is straight from the damage and will not hold a curl...and

they charged me $86.00! for all of it UGH!!I am just watching it break

off..Incredible isn't it?? Not to mention it was 100 miles away....I called

and the manager will call me on Monday.

I got RA at age 32 while raising 3 children alone. I know what it is like

having 3 young children and RA,fibromyalgia and Raynaud's. I am now 51. so

it has been a long haul..Don't feel bad as I am still trying to find the

right medication...

Thanks again!!!

Joanne

[Guest guest]

Amy,

I am sorry I got so upset last night in my e mail. These things just hit me kind of hard sometimes. I am sure that you are learning that when you live with plagio you go through so much that sometimes things set you off very easily.

Noah did have a flat spot on the back of his head, he also had a raised ridge going from the soft spot on the top of his head all the way down to his forehead. The ridge was caused from mild metopic craniosynostosis. Noah's head shape was cuased from torticollis which is a tightening of the neck muscle that will only allow them to turn their head to one side. I went into premature labor at 24 weeks and so Noah stayed head down from that point on.

We believe that him being head down and turned to one side made his neck muscle tight. Also he had severe reflux and when a baby has reflux they can have something called Sandifer's Syndrome. With Sandifer's a child turns their head to one side to try to make their esophogus longer and reduce the pain. We believe that this also added to the cause of the flat spot. Noah was also diagnosed as being deaf when he was 4 months old. The plagio had made his eustachian tubes out of alignment and trapped fluid in there, the fluid hardened. Once that was removed, tubes were placed in his ears, and he recieved helmet therapy he regained some of his hearing. We are not sure yet as to what degree he can hear but we know there has been some loss.

Our treatment was great!! We recieved our band in Atlanta. We have a wonderful neurosurgeon. Our GI Dr is the one who referred us to the neuro.

Our pediatrician kept telling us to wait and see. But once when Noah was in the hospital for his reflux the GI Dr sent in the neuro. He did a CT scan while we were still there in the hospital. He did find that the metopic suture had began to close but there was no need for surgery because it was very mild. He got his band in December and wore it until March. We did not get 100% correction we got about 90%. The ladies at Cranial Tech really wanted us to go with a 2nd band but we went with our neurosurgeons advice and did not put him in another one. We were very happy with the results and now that he is mobile the last 10% seems to have rounded out on it's own.

I am sorry this is long I just wanted to share our whole story with you. I will e mail out Noah's before and after pictures in a seperate e mail so you can see the results we got. If you have any more questions feel free to ask.

Mom to (10/09/97)

and Noah (05/29/00) DOC band grad!

Temple, Ga

[Guest guest]

,

I had no idea that any of these other problems could occur because of

plagio. It sounds like you have been through a lot. Your letter does

explain to me why the neurosurgeon asked me the questions he did, I was so

taken aback I never asked him why he asked.

Amy,WI

[Guest guest]

Hi

I am a mom to 3 boys & 1 girl. I think part of the number & letter thing is in

the gender. My older boys now 20 & 16 did not know the letters by sight at age

4. The oldest could sing his at that age the other did little talking & could

not. He stuttered severly then. In talking to other moms over the years, it

seems in general boys are just not interested as early as girls are. Both my

boys do and have done great in school over the years. They have been in

advanced classes & honors classes. I would not worry too much over that.

Tammy mom to 3 apraxia, 5, , 16, 20

[Guest guest]

Hi ,

I read that your daughter has a stiff neck and that the right side is flat.

My son was dx with torticollis, which is the tightening of the neck muscle. As a result of him constantly turning to the right, he developed a flat spot. Have you had your daughter checked for this? You might want to check out the group: torticollis and read all the info on tort and see if it might relate. This can be worked out through physical therapy, and it will help her to turn her head in the direction she can't. Please keep us updated!

' Mom

[Guest guest]

,

We always trick into looking left, which he hated, but if his favorite toy, a dog, tv, or whatever kept his eye, we would put it towards his left. I can only really stretch him good when he's asleep, do you think you could do this? I will attach a link that shows a few stretching techniques and holds that worked for us! Be sure to start out slow, and let the muscle release a little before doing too much. Good luck!

' Mom

Stretching

[Guest guest]

,

Forgot to add: if your Doc thinks its a good idea, push for that referral for therapy, you will be glad you did! They can teach you things to do and give you a break from doing it yourself! It's important because that tight muscle can effect walking, range of motion (turning head both ways), the spine, and facial asymmetry. Good luck!

[Guest guest]

,

Thanks for the info on 's stiff neck muscles. Her doctor did mention

to us that physical therapy would probably be a good idea and also

showed me a few exercises that I could do at home. I have been working

on her muscles and have seen improvement, but we are still thinking

about putting her into therapy anyway. She tends to get quite fussy when

we start messing with her head and neck as she favors looking to the

right so much.

Day #2 with the DOC band and is doing very good!

~

Wisconsin

USA

[Guest guest]

,

Thanks for the tips! I will check out the stretching techniques too. I

never thought about doing this while she is sleeping. Good idea since

she puts up quite a fuss awake.

~ 's Mom

WI USA

[Guest guest]

Kellie, I hope all goes well and your child doesent need surgery. Be

strong and only worry when it time to worry, not the what if worry. I

know its hard but its the only way to not drive yourself silly.

(((hugs))) lorraine FL.

> I do understand your point of view. I'm not dead set

> against it, but at this point I'm in denial that she

> will have to have it. I'm praying so very hard that

> she's correctable with the band. I cryed so hard

> yesterday when I saw those surgery sites. The aweful

> feeling these poor babies parent must be going thru,

> much less the babies.

>

> Well, enough of that, I can't go there today. If I

> have to go there in the future then so be it, but not

> now, I won't do that, it's stressful enough trying to

> do the insurance/doctor thing. I haven't cancelled

> that appointment, the specialist. I will go, just to

> get a specialist point of view of the CT scans.

> Sigh...

>

> Happy thoughts everyone!

>

> Kelli

>

> =====

> Kelli D Kelmi_4@y... Pictures:

http://photos./Kelmi_4

>

> __________________________________________________

>

[Guest guest]

Hi Everyone,

Don't know what I'm doing wrong but everytime I just try to post something it

gets sent back to me.

Help. Does anyone know what Lodine is and what the side effects are? Sorry to

just burst in. Kim hope you get to feeling better.

SimplyReliv@... wrote: I had been having some pains in my lower back that

was waking me up in the

middle of the night, but it's better now. My mom said that's where hers

started.

Kim

> Wow Kim, I am sorry to hear that your mother has arthritis. Do you have any

> of the symptoms because you say you think you are heading down that road..

>

www.Relivonline.com/simplyreliv

Maximum health is as simple as Reliv!

[Guest guest]

Dear ,

I'm sorry to have to say this, but I found your comments about

anti-depressants very upsetting because I believe you are misleading others

about them.

Your comments " what good would they do if you can't walk and are in pain? "

is completely erroneous IF someone suffers from clinical depression.

I do, and I can't walk very far or very well, and I am in constant pain, even

with pain and muscle relaxant meds.

What would happen if I stopped taking my anti-depressants?

1) I would not be able to sleep at night.

2) I would become even more unable to function.

3) The pain would increase. I have enough already.

4) My inability to focus for long would become a complete inability to focus.

5) My optimism would go away.

6) My sense of humor would decrease.

7) I would spend a great part of the day drying.

8) I would no longer have any quality of life.

9) I would not care if I lived or died.

That's what good they do even though I can hardly walk and am in constant

pain.

is on an extremely low dose, and probably needs to see a psychiatrist

who is medically qualified to determine if she has depression, what type of

depression she has (if she does), and what the proper medication or combination

of meds she should be taking. is aware of this and agrees - she has

written me that.

Please refrain from giving medical advice when you do not know what you are

talking about. You may do significant damage to someone.

It is hard enough for those of us who are depressed to get our families to

understand this is a medical illness, much less the general population. You do

us all an injustice when you make such statements.

Am I angry? YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jo-Anne Ruskai Wicklund (M.A. Cert. Psychologist)

aka Jo

Re: [ ] DENISE/Misc.(long)

> Jo,

> Thank you so much for the long message. I will attempt to answer you.

> 1-I know that my severe shoulder pain could be any number of things but

the

> rheumy did have me have an X-ray and his diagnosis was mild to moderate

> osteoarthritis. I had a cortisone shot which did nothing. Now I am in

the

> week before surgery and can't take anything anyway but I will call him

today

> to have at least a NSAI in place for after surgery.

> 2-the knee replacement is because there is no cartilage left in my left

hip

> and knee so nothing stops the pain. And I can't really walk-the knee tips

in

> at quite an angle.

> 3-I do not have a psychiatrist and I agree I need one. I started on the

> Zoloft several years ago prescribed by my then PCP when things started

going

> wrong physically etc (children in crisis too). Since the I did see a

> psychologist for awhile after my stroke but that's all. It has helped-it

is

> only if I skip it for several days that a " death wish " comes. The " they

> would be better off without me " stuff. But I am a very glass half full

> person but I also can't help wishing that it wasn't my job to allay

everyone

> else's fears that I am entitled to my own.

> 4-guilt is somehow a way of life-never enough time, money, energy... But

> even with it I manage to keep a somewhat positive attitude. But last

night

> I cracked a bit and told my husband that I can not be what he thinks he

> needs right now. He has phantom pains but won't see a doctor and I

> practically know all 10,000 employees at Mass General by name-just

kidding.

> I told him that I can't make him better, I need to make me better.

> 5-I will confess to being an overachiever-I NEED my house clean, I NEED to

> help other people, I NEED to be artistic, I Need to be the Mom who does

it

> all. No matter how many books or articles I have read it doesn't change

the

> fact that in the past I have only been happy doing it ALL. Now I can't,

now

> I need help and won't ask and I HATE it. Even though I can't do much my

> family still turns to me for the answer to everything and I have to admit

I

> don't have it right now. For example- I had a brain hemorrhage in

> 1996-nearly died and when I finally regained some consciousness, I was the

> one who organized our goat breeding from my hospital bed. (We show goats)

> Sorry for dumping!

> Temple

[Guest guest]

I hope your surgery goes well. I wanted to mention that you can not see

shoulder damage wihout a MRI. An x-ray of my shoulder showed some

arthritis.When the surgeon sent me to get the MRI it showed terrible

damage with just bone rubbing on bone. He put me right on the surgical

schedule and 2 months later I had the other one done. My gp just would

not listen when I told him the pain was so bad. both sholerswee

completely replaced and I can lie on either side. The tendons in both

shoulders had snapped and the ends had disappeared. Demand a Mri if

nobody believes you. A good shoulder surgeon will spot it in a minute.

I also had both hips replaced , a wrist fused and both feet operated

on. I agree with , on the depression issue. My life was so much

better after surgery.It was like someone had given me presents. I look

forward to every surgery now. Each one gives you part of your life back.

And in my case the depression lifted.I will always feel angry,hurt and

cheated with what this disease has done to me and my plans for life. But

I know that although there is no magic pill out there,there are surgeons

with gifted hands. With my hips I was in a wheelchair and in constant

pain.Now I can run up and down the stairs and am sitting crosslegged on

my bed as I type this. I am 55 years old so it's not like I was in great

shape to begin with. Good luck with your surgery. By next summer with

all you are getting done you will be feeling so much better. Joyce

[Guest guest]

Hi Tom & :

Are the twins still not sleeping well with their helmets? I'm so

sorry you're having so much trouble.

I did look at their pictures, they are adorable.

Have you checked out the plagiocephaly home page? I'm attaching the

link for the website. You said you were interested in seeing baby's

heads, this link will send you directly to the before & after photos

section of the page. You'll also find a ton of great & helpful

information regarding plagio, torticollis, FAQ, you name it!!

Also check out the ton of pictures here in this group under files

then click on Member's Kids. There are a lot of pictures of our

kid's heads in there to maybe help you with comparison.

Hang in there, I hope the twins adjust soon

Debbie Abby's mom DOCgrad 6/22/01

Michigan

Here's the link!!!

http://www.plagiocephaly.org/support/before-after.htm

> > It sounds like your twins are voicing their opinion

> > about the helmet.

> > It is probably in their dispositions. I was lucky,

> > my daughter slept in

> > hers the first night and for the next three months

> > she didn't care

> > whether she had it on or not. My advice to you is

> > not to stress over

> > this too much! Take it slow and maybe as they get

> > more used to it they

> > will sleep in them. You can only do what you can

> > do! The helmet is

> > good for them but also is your happiness and theirs!

> > Don't worry - it

> > will work out!

> >

> > Paige

> > Mother to Madison - recent Graduate - August 2001

> >

> >

>

>

> __________________________________________________

>