Frustration

[Guest guest]

My daughter, as well as the neighborhood kids also can be destructive. I think

that's just part of being a kid. Frustrating for parents, even more so with

children with special needs, but that's how kids learn.

What I have done, if possible, is have the child clean up, try to fix or repair

the damage they did. When the neighborhood girls smashed all the plants in my

garden because they forgot to stay away from the garden area, I had them to help

me plant new ones. I had them participate just a few minutes past being bored

with it, so they will learn its not fun, but work.

When my daughter broke my glass vase when she was frustrated, I made her use

some of her regular play time to make me a new one. Of course I explained that

it wasnt the same as the old one, but that she must think about other people and

replace what she breaks.

When one neighborhood girl decided to use the shower instead of a toilet, she

couldn't believe she was responsible for cleaning it up. Sure, I had to go

behind her afterwards and really clean the shower, but the point (easy to say

and hard to do sometimes) was to help her to learn about others, and about

responsibility, not to punish or get angry at her. Since then she hasn't tried

anything like that at our house.

The rule here, and all the neighborhood kids know it by now, is that if you

break it or make the mess, you clean it up. At first they all protested, but

now, at least when they are here at my house, they all know what is expected and

when they do get frustrated or forget, and break something or make a mess, they

clean it or replace it without any reminding from me.

I don't think it stopped the " not thinking " but it has helped all the kids learn

that they have some responsibility for their actions.Get more from the Web.

FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

I have had so many problems with my grandson who is five today. We have

had him for two years and he has been diagnosed with so many things, that

sometimes I wonder what is the real problem. He has dx of ADHD, SID, PDD,

Bipolar, Mild Mental Retarded, and the following speech dx. Speech and language

delays, Oral Hypotonia, Apraxix, and he also has a small tongue.(I can't rember

the word for that). He also has problems with his teeth. He has had his four top

front teeth pulled because they came in black. He has a mouth full of fillings

and stainless steel caps. Yesterday one of the caps that was done in Dec.

abscessed. They had to do a root canal. They sedated him with Demerol. He was

out off it all day. He slept all day and all night. Even today he's acting a

little weird. I guess the Demerol stayed with him longer the six hours. Our

newest problem with him is allergies. His pediatrician did a blood test that

showed he had allergies. It showed he was allergic to milk, soy, wheat, peanuts,

almonds, dogs, and cats. So his doctor sent us to a allergist. First of all he

was the worst doctor we have ever seen. He didn't even acknowledge . He

said he doesn't trust that blood test. He wants to skin test him. I said

is a special needs child and we have to do things differently with him. I asked

how he would do it. He said the same as anyone else. He didn't even know what

PDD and SId were. I just didn't feel comfortable with him. I asked if food

allergies can cause some of his problems and affect his behavioral issues. He

said NO. He said that only his asthma and runny nose could cause his allergies.

I have been reading a book called ,IS THIS YOUR CHILD BY DORIS RAPP. She hits a

lot of 's symptoms and says food allergies can be a cause. So now I don't

know what to think or what way to turn. I did find out this is the only

allergist in the area that accepts Medicaid so I have no choice but to keep him.

Than we have the issue of what to do with him next year? He is kindergarten age.

He has been in special Ed. pre-school for the past two years.He fuctions way

below his age leval. His speech is about 18-24 months. He probally for the most

part fuctions as a 2 1/2 year old. However he has great problem solving skills.

His teacher thinks he needs more than what she can provide. She also knows he's

not ready for kindergartin. There is not much to offer in this town. We live in

rural Nevada. She is thinking of a autism class. He receives S. T. and O.T. I'm

writing a letter today to say I want tested in every area and a behavior

function assessment done before our end of the year IEP meeting .

Sorry this is so long but I just needed to vent with all the frustrations. Any

help or advice would be very welcome.

Thanks, Gail

[Guest guest]

>He wants

> to skin test him. I said is a special needs

> child and we have to do things differently with him.

> I asked how he would do it. He said the same as

> anyone else. He didn't even know what PDD and SId

> were. I just didn't feel comfortable with him. I

> asked if food allergies can cause some of his

> problems and affect his behavioral issues. He said

> NO.

Oh Gail,

I had to respond! Trust your instincts! If you decide

to have the skin test done, I would find a different

doctor without question. At the very least the doctor

you saw had deplorable bedside manner.

My children also have allergies and one had the blood

work and later the skin test. My child was 11, and

had just gotten over a serious illness and was

accustom to needles but found the skin test very

painful.

I also had the skin test as a child and didn't

remember it being that painful so unfortunately we

proceeded to have my child tested. The skin test does

more fine tuning and is more accurate.

I also have read the Doris Rapp book and strongly

believe her, food allergies can definitely influence

behavior (my opinion).

Good Luck and follow your heart,

Audrey

[Guest guest]

Are all allergists jerks? I doubt it, but the allergist I took my son to

when the doctors all thought his reflux was an allergy instead of reflux was

a COMPLETE TERROR. I couldn't STAND him. The blood tests, though, I must

admit, have been pretty unreliable in my son, Wiley's, case. He tested

allergic to wheat, but eats wheat with no discernible reactions. He tested

as not allergic to soy, but breaks out in hives from it. He tested not

allergic to cats, but sneezes himself sick around them. So blood tests are

not as reliable as skin tests. And with an SI problem, I would imagine your

grandson is not going to enjoy his skin test. Therefore, be sure it is his

one and ONLY for awhile and see too if a skin-numbing rub-on agent can be

used first that will not skew the test results - like what they use at

hospitals to put IV lines into infants, etc. See if your pediatrician can

get involved and arrange for something like that instead of going to mr.

allerjerk about it directly. Jerky doctors tend to behave better in

conversation with other doctors. Discuss what exactly you want him tested

for with the doctor you like, have him communicate that as well. It sounds

like you have your work cut out for you at the moment - he's very lucky to

have such a good grand parent! And i think at this point it has been well

documented that allegies can affect behavior - not that will wake up

a totally new boy after not eating anymore wheat toast, but you probably

will see one improvement or another if he is suffering from allergies that

will make it worth looking into. Good luck!!!

Betsy, Mom to Wiley (Coyote) 2 1/2 years old

>From: " Ken Crow " <crow@...>

>Reply-

>< >

>Subject: Re: [ ] Frustration

>Date: Fri, 12 Apr 2002 08:06:44 -0500

>

>I have had so many problems with my grandson who is five today. We

>have had him for two years and he has been diagnosed with so many things,

>that sometimes I wonder what is the real problem. He has dx of ADHD, SID,

>PDD, Bipolar, Mild Mental Retarded, and the following speech dx. Speech and

>language delays, Oral Hypotonia, Apraxix, and he also has a small tongue.(I

>can't rember the word for that). He also has problems with his teeth. He

>has had his four top front teeth pulled because they came in black. He has

>a mouth full of fillings and stainless steel caps. Yesterday one of the

>caps that was done in Dec. abscessed. They had to do a root canal. They

>sedated him with Demerol. He was out off it all day. He slept all day and

>all night. Even today he's acting a little weird. I guess the Demerol

>stayed with him longer the six hours. Our newest problem with him is

>allergies. His pediatrician did a blood test that showed he had allergies.

>It showed he was allergic to milk, soy, wheat, peanuts, almonds, dogs, and

>cats. So his doctor sent us to a allergist. First of all he was the worst

>doctor we have ever seen. He didn't even acknowledge . He said he

>doesn't trust that blood test. He wants to skin test him. I said is

>a special needs child and we have to do things differently with him. I

>asked how he would do it. He said the same as anyone else. He didn't even

>know what PDD and SId were. I just didn't feel comfortable with him. I

>asked if food allergies can cause some of his problems and affect his

>behavioral issues. He said NO. He said that only his asthma and runny nose

>could cause his allergies. I have been reading a book called ,IS THIS YOUR

>CHILD BY DORIS RAPP. She hits a lot of 's symptoms and says food

>allergies can be a cause. So now I don't know what to think or what way to

>turn. I did find out this is the only allergist in the area that accepts

>Medicaid so I have no choice but to keep him.

>Than we have the issue of what to do with him next year? He is kindergarten

>age. He has been in special Ed. pre-school for the past two years.He

>fuctions way below his age leval. His speech is about 18-24 months. He

>probally for the most part fuctions as a 2 1/2 year old. However he has

>great problem solving skills. His teacher thinks he needs more than what

>she can provide. She also knows he's not ready for kindergartin. There is

>not much to offer in this town. We live in rural Nevada. She is thinking of

>a autism class. He receives S. T. and O.T. I'm writing a letter today to

>say I want tested in every area and a behavior function assessment

>done before our end of the year IEP meeting .

>Sorry this is so long but I just needed to vent with all the frustrations.

>Any help or advice would be very welcome.

>

> Thanks, Gail

>

>

>

>

[Guest guest]

> I have just written a 2.5 page letter to this Doctor - explaining

> myself and the fact that I want answers to my problems - and answers

> to what's causing this pain. I have asked him to work together with

> me on resolving these problems.

I think you shouldn't waste your time. Get another doctor. Call around

and ask them in advance if they have any experience with hyopogonadism

and if they have other patients that they treat with that condition.

> I'm tired of being in pain. I'm tired of being on narcotic pain

> meds. I'm tired of no one believing me. It so Friggin Frustrating!

Well, you're certainly in the right group here! Most of us have had

the same problems as you. I spent years going through a variety of

doctors until getting some satisfaction. Hang in there; if your

experiences are anything like mine, eventually you'll get the right

help. It's doubly hard to be persistent when you're depressed though.

I know. I feel pretty good now most of the time.

[Guest guest]

I think everyone here can sympathize with you on this issue. I myself

have been brushed off by endos and other so called specialists more

times than I'd like to mention. The only choice I think you have is to

first do what your planning by giving the doctor your letter, which I

doubt will change his mind, the second option is to find another doctor

and hope he/she will have some compassion and some openmindedness to

help you have a better quality of life. Don't give up, if there's

anything I've learned about dealing with the medical community it is to

always question everything and always try and educate yourself about

your condition because the doctors aren't always right and sometimes

you have to be educated enough to know that so you can get the help you

need. Good Luck.

scott

knoto55 wrote:

> Hi everyone,

>

> I went to see my Endo today and I brought the ACCE guidlines and a

> printout of Dr. Kryger's post.

>

> When I was first diagnosed a year ago - they tested me for Serum

> Testosterone with was 94, LH, FSH and Prolactin. All signs pointed

> to a Pituitary adenoma which was then discovered when I had an MRI.

>

> After a month on Androgel, I was again tested for total Testosterone

> and it was now over 800. Since that time no other blood work has

> been done.

>

> When I saw Dr. Kryger's post, and the ACCE guidelines - and all the

> news lately about Hormone Replacement Therapy, I wanted to bring this

> up with my Doctor.

>

> Well - he brushed everything off as Fluff. Those Doctors don't know

> what they are talking about. Needless to say, I walked out of his

> office totally upset and frustrated.

>

> I have had chronic pain for a number of years now - pain in muscles,

> joints and bones - all unexplained. When I found out I had a

> Pituitary Adenoma - and found that a lot of people with Pit problems

> also experience chronic pain just like me, I thought we finally found

> a solution. But, this Doctor is not working with me - I think he

> believes its all in my head. Well -it is - in a Pituitary adenoma!

>

> I have just written a 2.5 page letter to this Doctor - explaining

> myself and the fact that I want answers to my problems - and answers

> to what's causing this pain. I have asked him to work together with

> me on resolving these problems.

>

> Tomorrow morning I have to stop at his office to drop off collected

> saliva for a cortisol test. I am going to include the letter I

> wrote, a copy of the ACCE guidelines and Dr. Kyrger's post.

>

> I want him to work with me - I want to be monitored more closely than

> having to wait another six months to see him. I am also going to

> make an appointment with my primary doctor and tell him.

>

> I'm tired of being in pain. I'm tired of being on narcotic pain

> meds. I'm tired of no one believing me. It so Friggin Frustrating!

>

> K

>

>

>

[Guest guest]

I agree with this. I don't recall anyone ever saying that a doc that

was difficult at first eventually became more reasonable due to the

persuasion of the patient.

It's just a better use of your limited time, money, & energy to

interview someone else. Just go in, take your records and ask for a

second opinion. You can see what their reaction is to various

possible courses of action. Sadly, it may take quite some time to

find someone. Best to bite the bullet and get started asap.

Good luck,

Brad

> > I have just written a 2.5 page letter to this Doctor - explaining

> > myself and the fact that I want answers to my problems - and

answers

> > to what's causing this pain. I have asked him to work together

with

> > me on resolving these problems.

>

> I think you shouldn't waste your time. Get another doctor. Call

around

> and ask them in advance if they have any experience with

hyopogonadism

> and if they have other patients that they treat with that

condition.

>

> > I'm tired of being in pain. I'm tired of being on narcotic pain

> > meds. I'm tired of no one believing me. It so Friggin

Frustrating!

>

> Well, you're certainly in the right group here! Most of us have had

> the same problems as you. I spent years going through a variety of

> doctors until getting some satisfaction. Hang in there; if your

> experiences are anything like mine, eventually you'll get the right

> help. It's doubly hard to be persistent when you're depressed

though.

> I know. I feel pretty good now most of the time.

[Guest guest]

Hi all,

Well I dropped of the letter to the Doctor with my Saliva.

This afternoon, he telephoned me at work. He said he read the letter

and he did apologize somewhat. He said I should not take everything

I find on the Internet as fact. I told him I didn't. But, if I see

the same information in more than on place, I tend to believe it.

The conversation went very well. He is willing to work with me - He

is willing to explain everything in more detail now that he knows I

can understand what he is talking about.

He understands the pain I have and admits that Science still does not

understand the effects of the Pituitary on body and hormonal

function - and PAIN.

I did mention that I have had to be my own advocate for my health

care. That I am intelligent and can understand medical talk. I had

said that I'm an analyst and know how to analyze. I think he

understood where I was coming from and agreed to look into my

problems a bit more.

This Endo is supposed to be one of the best in my area. He's also a

Professor - and in my experience any Doctor that is a Teaching Doctor

has to be up on the latest infomation, studies and literature. He

was also going to order the PSA test and the E2 test.

He said he empathizes with the pain that I have - and that does

concern him. He's also going to send me a paper on hypogonadism by a

Snyder?

I am still going to discuss this with my primary care doc next week.

I really do not want to get another Endo - and have to go through all

that beginning/getting to know you steps. This year I already had to

get a new rheumatologist.

I will keep you all informed -

thanks,

Ken

>

>

> > > I have just written a 2.5 page letter to this Doctor -

explaining

> > > myself and the fact that I want answers to my problems - and

> answers

> > > to what's causing this pain. I have asked him to work together

> with

> > > me on resolving these problems.

> >

> > I think you shouldn't waste your time. Get another doctor. Call

> around

> > and ask them in advance if they have any experience with

> hyopogonadism

> > and if they have other patients that they treat with that

> condition.

> >

> > > I'm tired of being in pain. I'm tired of being on narcotic

pain

> > > meds. I'm tired of no one believing me. It so Friggin

> Frustrating!

> >

> > Well, you're certainly in the right group here! Most of us have

had

> > the same problems as you. I spent years going through a variety

of

> > doctors until getting some satisfaction. Hang in there; if your

> > experiences are anything like mine, eventually you'll get the

right

> > help. It's doubly hard to be persistent when you're depressed

> though.

> > I know. I feel pretty good now most of the time.

[Guest guest]

Ken,

Good for you. Sounds like you are about to get on a roll.

Having been a member of several ACT-UP chapters...Silence = Death.

Hopefully your advocacy will be inspirational for others here.

OR eon

[Guest guest]

Brad,

This is my second endo - the first one made a diagnostic error which

I caught. When they did the first T level test after I began

Androgel, my Prolactin was a few points above normal. When he called

me with the results of that and the MRI that showed I had a small

pituitary tumor, he said he wanted me on Dostinex. Dostinex is used

to treat prolactinomas.

According to my own research, my prolactin could have been high

because of the antidepressants and narcotic pain killers I am

taking. I did not want to go on Dostinex unless there was a definite

need because of all its side effects.

When I had my next appointment with him, I jumped out at him first -

mentioning again my meds and how they could affect my prolactin

levels. He backtracked then and crossed off his previous diagnosis

from my chart (but I had a copy of what he wrote). When I told him I

found another Doctor he got pissed off - he wouldn't renew my

Androgel prescription either stating - let the other doctor handle

it.

The one I'm seeing now is supposed to be one of the best in my area.

I think I may have shocked him when he read my letter. It was very

strong and to the point - that I wanted him to work " together " with

me.

Lets see what happens. I'm going to give him just a few more months

and that's it.

Ken

> > > I have just written a 2.5 page letter to this Doctor -

explaining

> > > myself and the fact that I want answers to my problems - and

> answers

> > > to what's causing this pain. I have asked him to work together

> with

> > > me on resolving these problems.

> >

> > I think you shouldn't waste your time. Get another doctor. Call

> around

> > and ask them in advance if they have any experience with

> hyopogonadism

> > and if they have other patients that they treat with that

> condition.

> >

> > > I'm tired of being in pain. I'm tired of being on narcotic

pain

> > > meds. I'm tired of no one believing me. It so Friggin

> Frustrating!

> >

> > Well, you're certainly in the right group here! Most of us have

had

> > the same problems as you. I spent years going through a variety

of

> > doctors until getting some satisfaction. Hang in there; if your

> > experiences are anything like mine, eventually you'll get the

right

> > help. It's doubly hard to be persistent when you're depressed

> though.

> > I know. I feel pretty good now most of the time.

[Guest guest]

Dear Natasha,

My daughter started her helmet at 9 months and we got good

correction. She, however, did have a bulging forehead, ear

misalignment and facial assymetry. With all these factors we

didn't have to think twice about getting the helmet. One thing I

can say for sure is that you will most likely get an honest opinion

from the CT people. I have heard of instances where CT has

NOT recommended a band for some babies. I'm glad you have a

consultation with them. I know how you are feeling right now. I

was nervous and frustrated and anxious when we were starting

the process. Maybe your Aidan won't need a band at all!

Good luck with your consultation and please let us know how it

goes.

Marci (Mom to )

Oklahoma

> Ok, so here I am again after reading old posts on both this

groups'

> message board and the older plagio groups'. I am exhausted!

Here

> is a little of my story. My son Aidan is 9 months old and like

most

> everyone else my husband and I have tried to bring attention to

his

> head to the peds since he was 2 months old and they told us

not to

> worry. Repositioning (which I did on my own) has made a very

small

> difference. I see no forehead bulging, some eye assymetry

when he

> smiles but I have the exact same thing. Ears seem ok. Head

looks

> lopsided when looking down at the top. I have read on the

posts

> where babies that did not have much improvement, the babies

were in

> high head circumference percentiles. Aidan is the opposite.

Even

> though he is usually 50% in height and weight, his head is only

3%.

> I am hoping that will be a good thing since hopefully he will

have a

> good growth spurt in the old noggin soon! I have an evulation

at CT

> in Atlanta tomorrow and an appt with a neuro in Feb (don't

know if

> he is helmet friendly or not). Part of me is hoping that CT does

> not suggest a helmet but then if there could be some

> improvement..... I just feel so overwhelmed and helpless and

scared

> about making the right decision. Thanks for listening, Natasha

[Guest guest]

Hi Natasha:

Frstration, we've all had the same feelings as you at one point or

another. You'll make the best decision for Aidan, his plagio sounds

mild so if you do decide to band, he still has plenty of time to get

good correction.

Good luck at tomorrow's CT appt, they will give you their honest

opinion on Aidan's head shape....they can also probably refer you to

another speciliast who is band friendly, IF they feel Aidan would

benefit from their band. And possibly, their recommended specialist

could get Aidan in before February.

Please let us know how the consultation goes tomorrow w/CT....hang in

there!

Debbie Abbys' mom DOCGrad

MI

> > Ok, so here I am again after reading old posts on both this

> groups'

> > message board and the older plagio groups'. I am exhausted!

> Here

> > is a little of my story. My son Aidan is 9 months old and like

> most

> > everyone else my husband and I have tried to bring attention to

> his

> > head to the peds since he was 2 months old and they told us

> not to

> > worry. Repositioning (which I did on my own) has made a very

> small

> > difference. I see no forehead bulging, some eye assymetry

> when he

> > smiles but I have the exact same thing. Ears seem ok. Head

> looks

> > lopsided when looking down at the top. I have read on the

> posts

> > where babies that did not have much improvement, the babies

> were in

> > high head circumference percentiles. Aidan is the opposite.

> Even

> > though he is usually 50% in height and weight, his head is only

> 3%.

> > I am hoping that will be a good thing since hopefully he will

> have a

> > good growth spurt in the old noggin soon! I have an evulation

> at CT

> > in Atlanta tomorrow and an appt with a neuro in Feb (don't

> know if

> > he is helmet friendly or not). Part of me is hoping that CT does

> > not suggest a helmet but then if there could be some

> > improvement..... I just feel so overwhelmed and helpless and

> scared

> > about making the right decision. Thanks for listening, Natasha

[Guest guest]

Natasha,

I just wanted to wish you luck at tomorrow's CT evaluation! Be sure

to let us know how it goes!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Ok, so here I am again after reading old posts on both this groups'

> message board and the older plagio groups'. I am exhausted! Here

> is a little of my story. My son Aidan is 9 months old and like

most

> everyone else my husband and I have tried to bring attention to his

> head to the peds since he was 2 months old and they told us not to

> worry. Repositioning (which I did on my own) has made a very small

> difference. I see no forehead bulging, some eye assymetry when he

> smiles but I have the exact same thing. Ears seem ok. Head looks

> lopsided when looking down at the top. I have read on the posts

> where babies that did not have much improvement, the babies were in

> high head circumference percentiles. Aidan is the opposite. Even

> though he is usually 50% in height and weight, his head is only

3%.

> I am hoping that will be a good thing since hopefully he will have

a

> good growth spurt in the old noggin soon! I have an evulation at

CT

> in Atlanta tomorrow and an appt with a neuro in Feb (don't know if

> he is helmet friendly or not). Part of me is hoping that CT does

> not suggest a helmet but then if there could be some

> improvement..... I just feel so overwhelmed and helpless and

scared

> about making the right decision. Thanks for listening, Natasha

[Guest guest]

I'll pass on a summary of the advice I got just this Weds. when I

got the letter denying my work comp claim: Get a lawyer - they work

on a contigency basis, don't get discouraged and don't give up.

The group is great for support and feedback!

> i was injured almost10 months ago at work....lots of

pain..surgeon

> won`t operate NOW...it seems awaiting game but my compensation is

> being cut now due to my pain now being classified as chronic...I

have

> actively sought out help..pushed for xrays, MRI. cat scan..and I

mean

> pushed, did physical therapy 5 months until it became

painful..having

> me do exercises.. ..now have had facet joint injections and Fri

had

> an epidural the second..I read constantly about spinal pain...how

do

> I deal with workers comp??surgeon.., medical Dr. .etc.How can I

> return to work in 4 weeks..cutoff time ,due to needing money ,if I

> can not even stand , walk, or sit a lenght of time. I have

> degenerative disk disease at 3 levels, 3 bulging disks at lumber

> level and was told by one surgeon I need decompression and (there

is

> spinal stenoiss) but, possibly I need a fusinon at time of the

> decompression and discs being taken care of. other surgeon I was

> sent to sent to for (as he can do all the work plus a fusion "

said

> not just now " but, sent me to pain clinic so ,here I am 10 months

in

> pain, losing my funding and not knowing what to do.My quality of

life

> is very low. I loved my job but, I know I can not do it now as I

can

> barely put in a day at home.s going down daily...the joy in life

is

> hard to find.But, I have a very supportive husband and he makes me

> want to find a way to get better despite the crazy medical system

> that makes getting help to get better almosyt impossible and now

> Compensation Insurance is giving someoen a red star as she has or

> will be cutting my claim in 4 weeks. What to do?

[Guest guest]

I'll pass on a summary of the advice I got just this Weds. when I

got the letter denying my work comp claim: Get a lawyer - they work

on a contigency basis, don't get discouraged and don't give up.

The group is great for support and feedback!

> i was injured almost10 months ago at work....lots of

pain..surgeon

> won`t operate NOW...it seems awaiting game but my compensation is

> being cut now due to my pain now being classified as chronic...I

have

> actively sought out help..pushed for xrays, MRI. cat scan..and I

mean

> pushed, did physical therapy 5 months until it became

painful..having

> me do exercises.. ..now have had facet joint injections and Fri

had

> an epidural the second..I read constantly about spinal pain...how

do

> I deal with workers comp??surgeon.., medical Dr. .etc.How can I

> return to work in 4 weeks..cutoff time ,due to needing money ,if I

> can not even stand , walk, or sit a lenght of time. I have

> degenerative disk disease at 3 levels, 3 bulging disks at lumber

> level and was told by one surgeon I need decompression and (there

is

> spinal stenoiss) but, possibly I need a fusinon at time of the

> decompression and discs being taken care of. other surgeon I was

> sent to sent to for (as he can do all the work plus a fusion "

said

> not just now " but, sent me to pain clinic so ,here I am 10 months

in

> pain, losing my funding and not knowing what to do.My quality of

life

> is very low. I loved my job but, I know I can not do it now as I

can

> barely put in a day at home.s going down daily...the joy in life

is

> hard to find.But, I have a very supportive husband and he makes me

> want to find a way to get better despite the crazy medical system

> that makes getting help to get better almosyt impossible and now

> Compensation Insurance is giving someoen a red star as she has or

> will be cutting my claim in 4 weeks. What to do?

[Guest guest]

Boy...your story is almost identical to mine. First of all...GET A LAWYER!! My

lawyer wishes that I had gotten him sooner. I would still be getting benefits.

Get ready for the long haul...and whatever you do...watch out for hidden PI's

with videocams. They will do whatever it takes to make you look like you are

faking. Wish I had heeded some early advise. Sit on the couch with a remote and

do nothing....moaning when you have to pick up the remote.

Best wishes!!

Vivian H.

[Guest guest]

In a message dated 5/14/03 9:40:23 PM Central Daylight Time,

mumakedi@... writes:

> This evening we returned from his school meeting having basically

> been told that he was not progressing and that he had not met any of

>

I would be very curious to know what the educational goals were for him and

what specifically they did to try to move him towards those goals. Also, did

they revise their methods throughout the year when they saw that he was not

progressing? If he is progressing with the OT and speech therapist, it seems

unlikely that he wouldn't at least move forward a little bit educationally if

his program was appropriate for him. How familiar are you with what they are

doing with him in the school and how does it compare to the methods used by

the OT and ST? Is it possible to question the school system more to perhaps

determine where the breakdowns were? Also, if you do not feel the other

school is appropriate for him, is there another placement that may better

address his needs?

Gaylen

[Guest guest]

We are having the exact problem with one of the children in our clinic. The

school system wants to keep him in a classroom of 6 other autistic boys who

have less language and huge behavioral issues so that he can benefit from the

expertise of the teacher. The teacher is probably one of the best I have ever

dealt with but the entire concept that children model other children and not

adults as they get older is lost on the school system in this particular

case. We have been able to get this little boy into a regular classroom with

an aide for part of the day and he has blossomed in all areas. Stand firm and

keep him as involved with as many typically developing kids as you can. Kathy

-NNY

[Guest guest]

In a message dated 5/15/03 9:55:42 AM Central Daylight Time,

Momusic40@... writes:

>

HUH??!! Does this mean they aren't even trying to teach him? I think that

would be a huge red flag for finding another placement.

Several years ago, I challenged a speaker at a state autism convention

(geared mainly towards teachers) about her belief that you should teach to

the strengths and ignore the weaknesses. She talked about how many of the

HFA kids could decode words in reading but lacked comprehension of what they

were reading so teachers should use lots of written words. When I asked a

question about how to help a child who decodes well understand what he was

reading, she said something like " you may just have to become ok with the

fact that he may never understand what he reads. " Well, with an attitude

like that, maybe, but we chose to work on the weakness instead and he's made

tremendous strides in comprehension.

Gaylen

[Guest guest]

Muki~~

I live in Florida and have the same frustrations. My son is making amazing

strides in both eating and speech with his private therapy and the same with his

private ABA therapy. The school asked me just other week, " why do I think my

son needs to read? " I hope you're able to keep your son where you want him. I

know your instincts are probably correct.

All the best~~

Rose

Frustration

On occasion I have written to the list giving encouragement, to

others. Now I am writing looking for encouragement and strategies to

cope with a frustrating experience. My son will be 7 next month, he

has been a patient of Dr G for 3.5 years. In this time he has gone

from a non verbal, no eye contact, stimmy unhappy child who was

completely insensitive to pain, to a happy child with much less stims

and sensory issues, who understands and communicates on a needs level

in 2 languages, makes good eye contact and is learning well. His

private OT and speech therapists give him rave reviews and feel he is

progressing very well in both motor skills and language. In the last

6 months, he has learnt to swim, and to swing himself, has made good

improvements in graphomotor skills and in recognising letters and

phonetics as well as enlarging his vocabulary and language use. His

rate of improvement is ever increasing.

That being said he still has a lot of challenges, which we recognise

and are working on, especially in the social and symbolic spheres.

This evening we returned from his school meeting having basically

been told that he was not progressing and that he had not met any of

the educational aims for the year. He is in a special class with 7

PDD children in a regular school, but the other kids have Asperger

diagnosis and are much higher functioning. The school psychologist

implied that we should take him out the school and send him to a

special autistic school that is in Tel Aviv (more than an hour away

in the traffic).

In addition to the long commute, we are unhappy about the special

school option because there is no integration and its aims are very

much lower than a special class in a regular school, which strives

for normal integration. We are especially angry as there is such a

stark gap between the positive feeling that his private teachers and

we share and the negative response from the school.

We intend to fight the " system " , and while we recognise that the

Israeli system is very different from those in the US and other

places, we would be interested in hearing any ideas comments and

encouragement.

With thanks

Muki

[Guest guest]

Hi ,

My son went something exactly what you are talking about. It seemed like

he had regressed an entire year for behavior. He would refuse to do anything

willingly. He bit and banged his head against anything he could. It turned out

he was getting sick. It took a week before he had any cold symptoms and was

having absence seizures. He had not had them on a continual basis except when

he was 6 months prior.

had seen a parent behavior training educator. She would come to my house,

observe the behavior and give me suggestions how to handle it. It has worked

out well and after 10 sessions we did not need her anymore. It has been 2

months and she just came back to visit again since we are having more biting

mommy and sister issues. However, she could not get over the change in him and

how far he had come.

Also, we used to a SLP and he could not stand her high pitched voice and would

cry and bang when we got to the parking lot of the therapy center.

As far as the memory game goes, they play that too but just use the pictures on

the card for vocabulary and imitate the sounds animals make. It is not a

cognitive piece.

Hope

mom to (severe verbal and oral apraxia, hypotonia), Carly (dev delay) &

Kailee (dev delay)

wrote:

[Guest guest]

Get another test. Your first round of levels seemed low. See what

they are. Probably wouldnt hurt to get on an anti-depressant as

well. If your sleep apnea is severe, it could be cause of your

tiredness as well, which might not make your sex drive very high.

Are you on any other medications?

> Hi folks, new to the board. Thnks for listening. 35 year old male,

> only known condition is obstructive sleep apena. I have been

> diagnosed with ADD and a learning disorder. Former competitive

> powerlifter and aspiring bodybuilder. In the last year, my passion

> for lifting weights has waned, I seem to be weaker, increased fat

on

> my abdominal region, no sex drive (no sex in last 6 months-

Girlfriend

> worried). It seems like I wake up and feel weak and no interest

in

> physical exerciese I believe it is hormonal related. Here are my

> results:

>

> PSA-.8

> FSH-5.7

> LH- 3.5

> Prolactin 17.3

> Total Testosterone-264

> Somatomedin C-160

>

> 2 round of tests

>

> Testosterone 597

> Free Testosterone 19.9

>

> My urologist and endocrinologist advised my that my results are

> normal and I may want to consider counseling?!!! One of my

thoughts

> is that my testosterone is converting into Estrogen (Estrodiol).

My

> question is I am seeking a second opinion this coming Monday. Any

> reccomendations any of you have with the upcoming second opinion

> trying to get some solutions would be VERY appreciated.

>

> Thanks,

> Tim

[Guest guest]

I believe any kind of TRT is contraindicated when you have sleep

apnea. I don't agree with the diagnosis the urologist gave, but you

need to take care of the apnea before they treat your low T.

Regards,

K4

> > Hi folks, new to the board. Thnks for listening. 35 year old

male,

> > only known condition is obstructive sleep apena. I have been

> > diagnosed with ADD and a learning disorder. Former competitive

> > powerlifter and aspiring bodybuilder. In the last year, my

passion

> > for lifting weights has waned, I seem to be weaker, increased fat

> on

> > my abdominal region, no sex drive (no sex in last 6 months-

> Girlfriend

> > worried). It seems like I wake up and feel weak and no interest

> in

> > physical exerciese I believe it is hormonal related. Here are my

> > results:

> >

> > PSA-.8

> > FSH-5.7

> > LH- 3.5

> > Prolactin 17.3

> > Total Testosterone-264

> > Somatomedin C-160

> >

> > 2 round of tests

> >

> > Testosterone 597

> > Free Testosterone 19.9

> >

> > My urologist and endocrinologist advised my that my results are

> > normal and I may want to consider counseling?!!! One of my

> thoughts

> > is that my testosterone is converting into Estrogen (Estrodiol).

> My

> > question is I am seeking a second opinion this coming Monday. Any

> > reccomendations any of you have with the upcoming second opinion

> > trying to get some solutions would be VERY appreciated.

> >

> > Thanks,

> > Tim

[Guest guest]

Thanks so much for your reply. No, I am not using on any other

medication. Also, I tried breifly Zoloft but did not get any benefit

whatsoever. To all on this board, do any of you know of any Dr's in

Massachusetts who don't just pass you off and who are unwilling to

try any type of therapy to see if it works?

Thanks

T

[Guest guest]

I agree, althought my sleep apnea over the past year has not gotten

any worse but my strength, sex drive, memory and basic drive have

dropped markedly. Thanks for replying.

T

> > > Hi folks, new to the board. Thnks for listening. 35 year old

> male,

> > > only known condition is obstructive sleep apena. I have been

> > > diagnosed with ADD and a learning disorder. Former competitive

> > > powerlifter and aspiring bodybuilder. In the last year, my

> passion

> > > for lifting weights has waned, I seem to be weaker, increased

fat

> > on

> > > my abdominal region, no sex drive (no sex in last 6 months-

> > Girlfriend

> > > worried). It seems like I wake up and feel weak and no

interest

> > in

> > > physical exerciese I believe it is hormonal related. Here are

my

> > > results:

> > >

> > > PSA-.8

> > > FSH-5.7

> > > LH- 3.5

> > > Prolactin 17.3

> > > Total Testosterone-264

> > > Somatomedin C-160

> > >

> > > 2 round of tests

> > >

> > > Testosterone 597

> > > Free Testosterone 19.9

> > >

> > > My urologist and endocrinologist advised my that my results are

> > > normal and I may want to consider counseling?!!! One of my

> > thoughts

> > > is that my testosterone is converting into Estrogen

(Estrodiol).

> > My

> > > question is I am seeking a second opinion this coming Monday.

Any

> > > reccomendations any of you have with the upcoming second

opinion

> > > trying to get some solutions would be VERY appreciated.

> > >

> > > Thanks,

> > > Tim