Re: (unknown)

[Guest guest]

I started puberty young as well. I never had any problems with sinus

infections i had my kids. Never had a problem with ear infections either.

I'm not really sure if i was tall for my age, but i'm 5'7 " now.

[Guest guest]

Our son (32) never had any ear infections nor sinus infections. His puberty went normal and he's 1 meter 85 centimeters (5.97) which is a normal height for his age in The Netherlands

Dolph

Re: blepharophimosis (unknown)> > > > Clare,> > I was just reading your reply to Shena and you made me think...LOL. My> oldest son, who is 11, actually started puberty at the age of 9. He also> has ADD and during the process of all the testing to determine if he had> ADD, the doctor mentioned to me that he was starting puberty. At that time> he already had underarm hair. He turned 11 in Sept. and he is already> taller than me. He's 5ft. 8in. tall and wears a mens size 11½ shoe. He was> back to the regular in Jan. and he's started the 2nd phase of puberty. I> made hubby take him to that appointment because we had some questions about> it and felt my son would be more comfortable with his dad instead of me. I> sure wish there was more that the doctors knew about BPES. It's always a> guessing game. Wonder if this or that has to do with BPES.> > > > >

[Guest guest]

Out of the 3 guys that have BF here ...none are tall ( by far my kids are very small) no ear infections, sinus, or otherwise and my 13 yr old seems to be on the level of everyone his age puberty wise .....I didn't think this was part of BF ? Dolph Heideman <ajheideman@...> wrote:

Our son (32) never had any ear infections nor sinus infections. His puberty went normal and he's 1 meter 85 centimeters (5.97) which is a normal height for his age in The Netherlands

Dolph

Re: blepharophimosis (unknown)> > > > Clare,> > I was just reading your reply to Shena and you made me think...LOL. My> oldest son, who is 11, actually started puberty at the age of 9. He also> has ADD and during the process of all the testing to determine if he had> ADD, the doctor mentioned to me that he was starting puberty. At that time> he already had underarm hair. He turned 11 in Sept. and he is already> taller than me. He's 5ft. 8in. tall and wears a mens

size 11½ shoe. He was> back to the regular in Jan. and he's started the 2nd phase of puberty. I> made hubby take him to that appointment because we had some questions about> it and felt my son would be more comfortable with his dad instead of me. I> sure wish there was more that the doctors knew about BPES. It's always a> guessing game. Wonder if this or that has to do with BPES.> > > > >

[Guest guest]

I have a daughter, 6, with bleph. She is the first one in our family. Of

our three children, she is the only one with sinus infections, which she

seems to get with almost every cold. She is not particularly tall for her

age, no signs of early puberty (except possibly the attitude she likes to

sport on occasion!, and no other major symptoms except for the typical eye

issues - telecanthus, epicanthus inversus, ptosis. She also has a shortage

of skin around her eyes -- they are quite tight, if you know what I mean,

and they needed to graft some skin to her lower lid area to keep the lid

from pulling away from the eyeball. She is also quite smart. Of course, I

may be a biased mom, but her teacher said we should test her for the gifted

program in our district.

As for the questions about genetic testing, we had the testing done and it

did not tell us whether or not has type 1 or type 2. We just have to

wait and see how things go for her. Beth, from my conversations with the

genetics counselor, I think you are correct...there is no real difference

that genetic testing will make in how you proceed with treating your case of

bleph. You'll have to deal with symptoms as they arise, no matter what.

However, some people like to know and understand the causes of this, and my

conversations with the genetics councelor have really made a difference for

me. I really feel like I understand things much better because of it.

Also, she talked with us thoroughly about the risks and benefits of testing

to help us decide. (Risks involve things like having a record made of your

genetic makeup, etc. Minimal, in the estimation of my husband and I, but to

some this may be important.)

We saw a genetics counselor at Children's Hospital in Seattle. If you

decide to proceed with this, I'd suggest going to the closest children's

hospital. We saw a different geneticist at first, who was great, but when

we moved to Children's, they had us see the member of their team. There was

definitely a difference, because the genetics counselors at a children's

hospital are used to helping educate parents who are trying to make

decisions about future children. I really left that appointment much more

informed, and even was able to call her when I was pregnant with my third

child to ask questions.

Hope this helps! Dawn

[Guest guest]

My husband has a moderate case of BPES and he has never had an ear infection or a sinus issue . He only sicknesses issues are broncial. My little Juli Who has BPES is only 10 months old and on her 2nd ear infection..

Hmmmm makes you wonderbethgordon03 <bethgordon03@...> wrote:

These might be interesting questions to pose to the adults who have BPES, I have BPES and I did have a lot of ear infections, sinus infections, and still get sinus infections, my nose bridge is small but not extremely so. I was tall for my age, entered puberty young (11). I never thought any of these things were particularly unusual.> hi there, what a roller coaster, my son lynden as i replied earlier has some> of the same features as others........ puberty ithink he is not there yet> but he is tall and i mean tall i am 5 foot 3 (i am not tall by any means ha> ha)and lynden is about 5 feet, his feet are size 5, most of the other kids> in his class have size 1 or 2 feet. now his dad is 6 foot 2 but

now that i> see your guy's posts i am wondering if this is related to the BPES, lol> > Tonikka> Re: blepharophimosis (unknown)> > > > Clare,> > I was just reading your reply to Shena and you made me think...LOL. My> oldest son, who is 11, actually started puberty at the age of 9. He also> has ADD and during the process of all the testing to determine if he had> ADD, the doctor mentioned to me that he was starting puberty. At that time> he already had underarm hair. He turned 11 in Sept. and he is already> taller than me.

He's 5ft. 8in. tall and wears a mens size 11½ shoe. He was> back to the regular in Jan. and he's started the 2nd phase of puberty. I> made hubby take him to that appointment because we had some questions about> it and felt my son would be more comfortable with his dad instead of me. I> sure wish there was more that the doctors knew about BPES. It's always a> guessing game. Wonder if this or that has to do with BPES.> > > > >

[Guest guest]

I had posterior fusion at c1-c2 . I will be in a

collar for 3 months . very little neck pain , just

discomfort.

Good luck with surgery .

.

--- Jeanie Larson <jeanrrt1218@...> wrote:

> Hi,

> I have just found out that I am going to have to

> have a posterior cervical fusion at C3-4. I have

> scheduled it for June 15, 2005 since my daughter is

> graduating in May. I am wondering if there is

> anyone that has had this done and if so, how painful

> was it?? I have heard that it is much worse than

> the anterior approach, but since I am already fused

> C4-7, my doctor doesn't want to use the anterior

> approach this time because he would have to take out

> the plate and screws already in there to gain access

> to that area. Are there different approaches used

> in posterior fusion?? How long and painful is

> recovery??

> Thanks very much.

> RRT

>

> __________________________________________________

>

[Guest guest]

I had posterior fusion at c1-c2 . I will be in a

collar for 3 months . very little neck pain , just

discomfort.

Good luck with surgery .

.

--- Jeanie Larson <jeanrrt1218@...> wrote:

> Hi,

> I have just found out that I am going to have to

> have a posterior cervical fusion at C3-4. I have

> scheduled it for June 15, 2005 since my daughter is

> graduating in May. I am wondering if there is

> anyone that has had this done and if so, how painful

> was it?? I have heard that it is much worse than

> the anterior approach, but since I am already fused

> C4-7, my doctor doesn't want to use the anterior

> approach this time because he would have to take out

> the plate and screws already in there to gain access

> to that area. Are there different approaches used

> in posterior fusion?? How long and painful is

> recovery??

> Thanks very much.

> RRT

>

> __________________________________________________

>

[Guest guest]

Hi Terri,

Welcome to the site,

I had a TLHR and bone grafting at the beginning

of October last year and I was non weight bearing for three months. I

also am getting a lot of pain in my good hip and just this week end I could

hardly lift my leg in order to climb the stairs which great seeing as I still have

a lot of stiffness in my op leg too. I think that most of my pain (also

in my lower spine) is due to my body trying to get used to the fact that both

my legs are now a similar length whereas before my left leg was about 2 inches

shorter than my right. The majority of this difference has been corrected

by the surgery, I don’t think it is 100% but it is certainly better than

before. Could this be part of the problem for you? Have you

mentioned it to your doctor? I am still using one crutch at the minute as

I don’t feel that I can manage without it especially outdoors, but I

noticed the pain more when I began using just one crutch usually when walking

long distances.

Good luck

Jo

From:

terri manship [mailto:diamondgirl1109@...]

Sent: 02 March 2005 01:40

To:

Joint Replacement Surgery

Subject:

(unknown)

Hi all. I'm another newbee to this

group. I'm 49 and on 2/11 I had a THR. I have a cobalt chrome " press

fit " . Dr's orders is that I put no weight on it at all.

My transportation in my beloved walker. My question is..my good hip now is

starting to hurt. Can I damage it with putting too much weight on it? The

last I knew it was in great shape. I know weight has alot to do with it as I am

not small..I am 5'5 and 175 and I KNOW I need to lose weight. On 3/3 I get my

staples removed and then I will find out " if " I get to place any

weight on my new hip. Have any of you had your good leg start hurting? Thanks

for any input. This is a great site and I have been reading it daily

Terri

__________________________________________________

[Guest guest]

Hi Terri,

I had a THR on my left hip on 10/28. By December, my right hip began to ache badly. I'm now scheduled for another THR on my right hip on 3/15. The surgeon said it was fairly common for the opposite side to 'act up' after a THR.

I did not have the same weight-bearing restrictions as you, and at 52, was about 20 pounds overweight.

Good luck,

Carolterri manship <diamondgirl1109@...> wrote:

Hi all. I'm another newbee to this group. I'm 49 and on 2/11 I had a THR. I have a cobalt chrome "press fit" . Dr's orders is that I put no weight on it at all. My transportation in my beloved walker. My question is..my good hip now is starting to hurt. Can I damage it with putting too much weight on it? The last I knew it was in great shape. I know weight has alot to do with it as I am not small..I am 5'5 and 175 and I KNOW I need to lose weight. On 3/3 I get my staples removed and then I will find out "if" I get to place any weight on my new hip. Have any of you had your good leg start hurting? Thanks for any input. This is a great site and I have been reading it daily

Terri

__________________________________________________

[Guest guest]

Welcome Patty I have been looking for you glad yu found us.

We at one time had a letter someone posted for our family and friends explaining how we feel and that because we don't look sick doesn't mean we aren't sick. I can't find my copy of it but maybe someone else has it.

I hope you get some help.

[Guest guest]

hi again, i posted yesterday and it didnt go up ,maybe im doing somthing wrong ,was wondering after my surg on monday for cholesteatoma i lost my incus and stirup,will i ever hear again or can it be fixed, hope this goes thru ,thank you kirkHi Kirk

The loss of the middle ear bones causes conductive deafness. If your nerve hearing (the inner ear part) is functioning reasonable well then there is quite a lot of scope for improving your hearing. The first is reconstruction - they replace all or some of the bones with a prosthetic (often a titanium rod of some kind) which helps to conduct the sound to the inner ear. Another option is a BAHA (bone anchored hearing aid) which bypasses the middle ear by conducting sound directly through your skull. Lastly an ordinary hearing aid simply amplifies sound will provide some help. Any idea what your current hearing loss is according to your audiology chart? There are usually two graph lines: one measuring air conduction and the other measuring bone conduction.

Phil

[Guest guest]

Hi Clare,

Well done, I knew you wouldn't wait long for a trip. Drop me a note off

site at brodj2@....

Magz Teague

(unknown)

Hey guys,

Thanks for the replies.Hows it going ?Im on the Triton FPSO

did a week on the Beatrice Alpha then came out here on wed. Still

finding my feet but its all good so far.Are you also a safety officer

? think ill have to look into doing courses in the future not just

yet though!

Send instant messages to your online friends

http://uk.messenger.

[Guest guest]

Thank you!

Dagmar.

(unknown)

you can use velcro but it does not stretch. Better to use elastic

cloth with velcro sewn or stapled onto the ends.

The elastic cloth can get wet. So, the area of the cloth that

touches the wet electrodes should be taped with plastic tape to

avoid leaking the current through the wet elastic cloth.

bG

>

> Hi,

>

> I have one more question. How do you fix the electrodes onto your

wrist? Can you use a strip of velcro or would this carry the current?

>

> Thank you for your answer,

>

> Dagmar.

>

>

[Guest guest]

I added 5 pound ankle weights to my workout. That has made a big difference also. I can really feel that my legs are stronger.

Ideas for Eddie -- do you have a local YMCA? They have some wonderful youth programs. Does your community offer a "summer activity" for kids? These usually center around doing something active at a park. Is there something that he has always wanted to try? Can you sign him up for lessons? One thing that I an looking forward to getting back into this spring/summer is hiking. We liked to do that as a family when our boys were younger. Got out of the habit. Do you have some state parks nearby? They usually have some good hiking trails.How about biking? Do you have some biking trails nearby?

Dacia <><

God's grace has saved you because of your faith in Christ. Your salvation doesn't come from anything you do. It is God's gift. It is not based on anything you have done. No one can brag about earning it. Ephesians 2:8-9

www.DeafJesus.org

[Guest guest]

Coco Puro is one good brand of Virgin Coconut Oil in the market. Other

brands manufactured in the Philippines are also good provided that they

are registered with the Bureau of Food and Drugs...

>

>

>

> Can anyone recommend a good brand of virgin Coconut oil ... ?

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

all that I can recommend for now is Rare Earth

Centrifuged processed vco that i suggest that you

should try out first for yuu to know if it is indeed

good as I say.

thanks

selina

www.coconaturelle.com

--- nickvillarruz <iam@...> wrote:

>

> Coco Puro is one good brand of Virgin Coconut Oil in

> the market. Other

> brands manufactured in the Philippines are also good

> provided that they

> are registered with the Bureau of Food and Drugs...

>

> >

> >

> >

> > Can anyone recommend a good brand of virgin

> Coconut oil ... ?

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

For my son (who's 14 with AS traits), we've had him in gifted programming (which

worked fairly well socially - lots of square pegs - but demanded too much of him

in terms of written expression (his weakness)) in French immersion

(unchallenging academically, demanding socially as this kids were elite - this

was pre-diagnosis) and now mainstream high school with tutoring for both

strenghts and weaknesses. He floats academically through the day but I figure

there's enough stress socially and emotionally for him. To challenge him we're

using the tutor method.

Can't say it's the best system, but I know of no other at the moment.

kimz

(unknown)

Hi Amy, I wsh I had an answer for you. My daughter has similar

issues - high intelligence but emotionally unstable. She was placed

in a smaller SPED class last year and it really brought her down;

she missed out on a lot of school work; was terribly bored (which

brought on more OCD). She is doing better in a typical fourth grade

class this year but has a full time aide with her. She also just

switched meds and is doing great on Prozac. We are very nervous

about middle school next year (not sure if they will provide an aide

and not sure if dd wants an aide). I am anxious to see what kind of

suggestions you get from this group!

Good Luck, , mom to katie 10 yrs, OCD GAD

> Hello all,

>

> We have a dilemma, and we would like some feedback from others as

we try to

> make the best decisions for our daughter (Doug please feel free to

email me

> personally). Our daughter since first grade now in fifth has had

> difficulties in school towards the end of the school year. Some

of the

> issues are getting homework done, long term assignments,

heightened anxiety,

> social struggles, increased meltdowns.....this has impacted her

ability to

> learn and retain information the second half of the school year.

This

> situation has been an ongoing problem in each grade. By the end

of each

> school year she is almost non-functioning. Every little stressor

impacts

> her and causes her stability to deteriorate, she becomes age

regressive and

> more symptomatic. Her diagnosis at present is GAD (generalized

anxiety

> disorder) with panic, OCD, depression and alexithymia (inability

to express

> emotions in words or interpret the emotions of others). When she

was in the

> third grade she was put into a partial hospital program and did

not finish

> the year in public school. She made the most progress with both

the illness

> related issues and coping skills while in this program. She has

always been

> resistant to therapy, and it would increase her symptoms. We have

felt that

> the partial program offered her an environment that addressed all

of her

> inabilities and offered her group therapy that was more

comfortable for her

> to achieve such progress.

>

> We are looking at this pattern of ongoing issues that repeat each

year in a

> public school setting and asking ourselves if we are helping her

by keeping

> her in the main stream of society (public school) or are we

complicating her

> full potential that may be achieved by a specialized environment

(example a

> school for the emotionally/socially impaired). We are in our

second attempt

> to have her evaluated for Special Education, she does have a 504

currently.

> She was just recently diagnosed with scoliosis and may need

surgery due to

> the severity and this is an added concern we are factoring into our

> decisions of making this decision about her educational needs.

>

> Our questions are: Are we complicating her abilities by keeping

her in

> public school environments? Would a specialized school be more

appropriate?

> What do you offer to help bridge the gap of high intelligence, and

the

> emotional, and social weaknesses?

>

> Looking forward to hearing your views,

>

> Amy

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

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Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

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------------------------------------------------------------------------------

[Guest guest]

Dear Pang,

Sounds like you've had quite an experience with this illness already!

Most of us on this board are opposed to the iodine treatment because it

permanently destroys the thyroid, you must be on Synthroid for life, and it

causes

side effects after 2 years or so. Thyroid disease is caused by an imbalance,

and can be corrected, although it takes patience. Please go to our sister

site, iThyroid.com, to see how to use nutrition and supplements to address the

imbalance (of course, you still need to stay on the meds while you do this).

Good luck, and keep in touch,

AntJoan

[Guest guest]

Amy,

That's a tough question. The only worthwhile thought I have on the

problem is that most programs for kids with social / emotional issues are filled

with children who are tremendous discipline problems, and have, for the most

part, been removed from regular classrooms. Many, many of them are kids with

unstable families and lots of the kids are in and out of foster care. I know you

will evaluate any program very well, but I suspect that other than partial

hospitalization programs, you'll have trouble finding a place for someone like

your

daughter. And with a partial hospitalization program, don't you run into

insurance issues? Can you use it as an ongoing school option?

We found that public school was the best option for our daughter with

OCD, but it required some heavy-duty parent advocacy for a while. She had an IEP

starting in fifth grade, but it was borderline whether they would give it to

her, since she was getting all A's and B's. The fact that she was gifted and

still getting B's was used to point out that her OCD was impairing her

functioning. I think they signed the IEP mostly because I had made myself

indipensable

at school, and they liked my family and my daughter. (I hate to admit that,

but I think it's true.) She would easily have qualified for a 504, but her

psychiatrist told me to push for an IEP and I did. She has now gotten beyond the

social issues (way beyond!) and is doing really well.

Of course I don't know your daughter and can't tell how she funtions in

school, but for social and emotional issues, being around " normal " peers is

quite helpful. If you could reduce the stress through a 504 or IEP (reduce the

work load or grade only on what she finishes, etc.) so that she doesn't have

such a hard time in the spring, maybe she would be able to relax more. My

daughter had a Nov. - March collapse each year until this year. We made sure the

teachers knew and really didn't pressure her when she was stressed. It helped.

I'll be interested in hearing what others say.

[Guest guest]

Jeanette, You can get the book info at the website www.autismthoughts.com if you have any problems I am one of the authors and will be happy to hook you up.

Verla

(unknown)

Can anyone tell me, where i can get the book called heartfelt thoughts of mothers or mothers heartfelt thoughts???????????Not sure which way round it is.Please let me know.thanks netty

[Guest guest]

Can someone tell me Is http://www.collegepharmacy.com the only exclusive

on-line TD-DMPS distributor?

>>>> Ths pharmacy in Switzerland carries the AMT, same as above, TD DMPS for

Europe - they do not require a prescription, the one above does

_http://www.merlonipharma.ch/eng_frm_presentazione.htm_

(http://www.merlonipharma.ch/eng_frm_presentazione.htm)

HTH

Mandi in UK

[Guest guest]

My dentist said hydrogen peroxide and baking soda was the best.

(unknown)

>

> Hi Everybody,

>

> Does anybody know the safety of using household

> hydrogen peroxide?

>

> I used to use a combo of hydrogen peroxide and baking

> soda to brush my teeth, but a dentist told me it

> erodes the tooth enamel.

>

> So, now I just use plain baking soda.

>

> Thoughts?

>

> Much love,

> Pamela

>

> __________________________________________________

>

[Guest guest]

Thanks, . Is that what you use? How long and

what have been your results?

Pamela

--- " McCourt, Ph.D. " <drjem@...>

wrote:

>

> My dentist said hydrogen peroxide and baking soda

> was the best.

>

> (unknown)

>

>

> >

> > Hi Everybody,

> >

> > Does anybody know the safety of using household

> > hydrogen peroxide?

> >

> > I used to use a combo of hydrogen peroxide and

> baking

> > soda to brush my teeth, but a dentist told me it

> > erodes the tooth enamel.

> >

> > So, now I just use plain baking soda.

> >

> > Thoughts?

> >

> > Much love,

> > Pamela

> >

> > __________________________________________________

> >

[Guest guest]

Seems just like everything else. Cannot tell that it is better or worse.

Very Inexpensive. Mouth seems cleaner and less slimy than commercial paste.

Does not prevent tartar. Does not promote improved gum tissue. But then

again neither do the commercial products.

(unknown)

> >

> >

> > >

> > > Hi Everybody,

> > >

> > > Does anybody know the safety of using household

> > > hydrogen peroxide?

> > >

> > > I used to use a combo of hydrogen peroxide and

> > baking

> > > soda to brush my teeth, but a dentist told me it

> > > erodes the tooth enamel.

> > >

> > > So, now I just use plain baking soda.

> > >

> > > Thoughts?

> > >

> > > Much love,

> > > Pamela

[Guest guest]

Ruth welcome !

So glad your husband is feeling so good after surgery. Take it easy and

don't push the solid food too soon !

It is a wonderful feeling when the food hits your stomach for the first time

for a long time .

Good luck

Joan

Johannesburg

South Africa

(unknown)

>

> my huaband had surgury for A this week. he had the laproscopic heller

> myotomy.

> WOW. it has been a joy to see him eat and eat and eat. even if it is

> mostly soups and custard. no complaining over here. what a gift to have

> him eat again.

> just wanted to share our happy moment. we are from winnipeg, canada.

>

> __________________________________________________

>