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It's not just the parents who pressure the docs, but the other way around.

One time I went to a doc who was covering for my main pediatrician. We had

been travelling and my son had had a cough for quite a long time, but it had

been cold where we were and I thought between the travelling and cold, that

might have been why he hadn't gotten better. So I went to the doctor just

to make sure he didn't have pneumonia or something serious. She immediately

prescribed antibiotics. I said I didn't want them, that I just wanted to

get a diagnosis. She was quite insistent, even though she admitted they

weren't really necessary after I questioned her. Of course, I refused, and

once had been home (in warm Alaska!) he got better in a few days. I

always refused to go to that doctor after that (she had also misdiagnosed a

simple, common elbow misalignment that was causing considerable pain

and wasn't fixed until I went to my regular pediatrician. And I always

wondered why the ped used her. Ended up dropping the pediatrician later

over the vaccine issue - after he screamed at me!) Sandy from (warm) Alaska

PS It just snowed here. Never mind.

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED

HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED

AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO

BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION

WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE

AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR

HEALTH CARE PROVIDER.

Re: (unknown)

> > How long is a non antibiotically treated ear infection last?

>

> Believe it or not our pediatrician's assistant told us this a few years

ago

> when our adopted son was having repeated ear infections:

> " With antibiotics, the ear infection will go away in about 7 days, without

> antibiotics the infection will go away in about a week. "

>

> He had a long talk with my husband saying how he disagreed with the

routine

> use of antibiotics on children, but they get unbelievable pressure from

> parents to prescribe them. We got off the merry go round with my son, he

had

> a few more minor infections and then never had another one. None of my 3

> biological children have ever had ear infections, antibiotics, tylenol or

> any med. whatsoever.

>

> Long answer to a short question!!!

>

> H. in Utah

>

>

>

>

>

>

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Believe me, I have had to deal with the pressure from doctors about taking

antibiotics! I took our son to at least 5 different ped. trying to find one

who wouldn't just write a prescription. One dr followed me out of the exam

room telling me that my son would lose his hearing if we didn't immediately

schedule him for surgery to put in ear tubes and that I would be responsible

for it. This ped. assistant was the only one I could find who assured us

that ear infections didn't HAVE to be treated with antibiotics. How

refreshing!

H. in Utah

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>

Maybe someone could offer a class in assertiveness for OCD parents!

> >

This is the class I need!! I always know what I want to say

beforehand and then wimp out when I talk to the school!!

in N.C.

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  • 2 weeks later...
Guest guest

Hi ,

I had a very big abdomen but this was due to gaining

10kilos of fluid after haveing a kidney stone. It was

so bad that my legs and feet swelled up and found it

hard to walk. Anyway I'm sure that your doc will find

out what the problem is when you go and see him on

friday.

All the best

Matt

http://www.autoimmunehepatitis.com

=======================================

--- Wilcher <stephwilcher@...>

wrote:

> Hi everyone. I'm really having a tough time dealing

> with this weight gain

> lately. I wrote before asking anyone if they

> experienced a lot of weight

> gain in their abdomen. When I told my doctor about

> this he said that I may

> be retaining a lot of water in my abdomen and wanted

> me to have an

> ultrasound done to make sure. When they got the

> results of that yesterday

> and called me today, he said that there wasn't a lot

> of water in my abdomen,

> but was concerned about why my stomach was swelling

> so bad, and would like

> to see me next friday. I'm a little worried that

> something else might be

> wrong with me, but at the same time I'm hoping he'll

> see how bad I look and

> put me on some other drug in place of the prednisone

> (I know that's not very

> likely to happen). I mean, nothing else on my body

> has changed recently,

> just my stomach. It keeps getting worse and worse.

> Harder and harder to

> close my pants. It looks like I'm pregnant and I'm

> not. This is crazy! If

> something isn't wrong, then why am I not gaining

> weight everywhere else

> then??? Please let me know what your opinions are

> and if anyone has

> experienced what I am going through right now.

> Thank you!

>

>

>

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com

>

>

__________________________________________________

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Hi Veldanda,

Have you visited the site www.gfcfdiet.com yet? The discuss the gluten free

casein free diet there, and I think they discuss testing there. Some people

think that all autistic/ADD kids should go on a trial GFCF diet. It's something

you can do without testing. Generally, if someone REALLY likes a food item a

lot they may be sensitive or allergic to that food and may need to get off that

food. If removing the food results in changes in the child, then you know that

food is causing problems for the child. " Changes " usually involve the child's

getting worse for a few days before getting better.

MY opinion on testing:

* Allergist's skin tests are not very helpful, unless the allergist is very

experienced with food allergies

* Blood tests (RAST, ELIZA) can be helpful

* Bioenergetic tests (see www.biosetinstitute.com or www.allergy2000.com ) can

be helpful

* The peptide test (Great Plaines) can be helpful

* Food elimination trials are most helpful

My opinion on sugar is that it places stress on everyone's immune system, and

it's especially harmful to sick or sensitive people. In the case of kids with

gut problems, they may have a yeast infection and sugar is even more harmful.

See Dr. Semon's site at www.nutritioninstitute.com for yeast information.

Good luck, K.

| is it possible to test whether my kid is having food

| elegy relating to gfcf diet . Actually my kid is

| basically likes milk a lot and i am bothered whether

| it is really needed to undergo diet. And is sugar also

| harmful for autistic kids. Please let me know if

| anyone have any ideas.

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Another " take " on the diet that is not as difficult to manage is the " Dos

and Don'ts of the Diet " outlined Dr G's own website neuroimmunedr.com.

From: " The Kramer Family " <nmkramer@...>

Reply-

< >

Subject: Re: (unknown)

Date: Mon, 14 May 2001 10:01:15 -0500

Hi Veldanda,

Have you visited the site www.gfcfdiet.com yet? The discuss the gluten free

casein free diet there, and I think they discuss testing there. Some people

think that all autistic/ADD kids should go on a trial GFCF diet. It's

something

you can do without testing. Generally, if someone REALLY likes a food item

a

lot they may be sensitive or allergic to that food and may need to get off

that

food. If removing the food results in changes in the child, then you know

that

food is causing problems for the child. " Changes " usually involve the

child's

getting worse for a few days before getting better.

MY opinion on testing:

* Allergist's skin tests are not very helpful, unless the allergist is very

experienced with food allergies

* Blood tests (RAST, ELIZA) can be helpful

* Bioenergetic tests (see www.biosetinstitute.com or www.allergy2000.com )

can

be helpful

* The peptide test (Great Plaines) can be helpful

* Food elimination trials are most helpful

My opinion on sugar is that it places stress on everyone's immune system,

and

it's especially harmful to sick or sensitive people. In the case of kids

with

gut problems, they may have a yeast infection and sugar is even more

harmful.

See Dr. Semon's site at www.nutritioninstitute.com for yeast information.

Good luck, K.

| is it possible to test whether my kid is having food

| elegy relating to gfcf diet . Actually my kid is

| basically likes milk a lot and i am bothered whether

| it is really needed to undergo diet. And is sugar also

| harmful for autistic kids. Please let me know if

| anyone have any ideas.

_________________________________________________________________

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..

Hello Krammer Family,

I am very thankful to you for sending the

information which is very useful for me. ACtually I am

from India and till now we could not findout the right

dcotor for our kid, and we feel the information

provided in websites is so useful. We conducted all

blood tests for our kid and everything is normal.how

can we start intervention programs. can u please

suggest some behaviour intervention programs, or

clues, they wil be very useful for me.

Thanking you,

swapna veldandi

--- Suzanne Roelike <Sroelike@...> wrote:

> Another " take " on the diet that is not as difficult

> to manage is the " Dos

> and Don'ts of the Diet " outlined Dr G's own website

> neuroimmunedr.com.

>

>

> From: " The Kramer Family " <nmkramer@...>

> Reply-

> < >

> Subject: Re: (unknown)

> Date: Mon, 14 May 2001 10:01:15 -0500

>

> Hi Veldanda,

>

> Have you visited the site www.gfcfdiet.com yet? The

> discuss the gluten free

> casein free diet there, and I think they discuss

> testing there. Some people

> think that all autistic/ADD kids should go on a

> trial GFCF diet. It's

> something

> you can do without testing. Generally, if someone

> REALLY likes a food item

> a

> lot they may be sensitive or allergic to that food

> and may need to get off

> that

> food. If removing the food results in changes in

> the child, then you know

> that

> food is causing problems for the child. " Changes "

> usually involve the

> child's

> getting worse for a few days before getting better.

>

> MY opinion on testing:

> * Allergist's skin tests are not very helpful,

> unless the allergist is very

> experienced with food allergies

> * Blood tests (RAST, ELIZA) can be helpful

> * Bioenergetic tests (see www.biosetinstitute.com or

> www.allergy2000.com )

> can

> be helpful

> * The peptide test (Great Plaines) can be helpful

> * Food elimination trials are most helpful

>

> My opinion on sugar is that it places stress on

> everyone's immune system,

> and

> it's especially harmful to sick or sensitive people.

> In the case of kids

> with

> gut problems, they may have a yeast infection and

> sugar is even more

> harmful.

> See Dr. Semon's site at www.nutritioninstitute.com

> for yeast information.

>

> Good luck, K.

>

> | is it possible to test whether my kid is having

> food

> | elegy relating to gfcf diet . Actually my kid is

> | basically likes milk a lot and i am bothered

> whether

> | it is really needed to undergo diet. And is sugar

> also

> | harmful for autistic kids. Please let me know if

> | anyone have any ideas.

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com

>

>

__________________________________________________

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Cherry, you should call back and let them know that

you wanted to see the other Dr. and insist they

schedule you an appt. with him or her. We have to

fight for our health and not take no for an answer.

Judy/pensacola,Fl.

--- nanacherry@... wrote:

> Hi everyone,

> Haven't been in touch because not feeling well.

> I was so excited today as I had made an appointment

> with an AIH specialist at Jefrerson hospital in

> Philadelphia. I made sure that he was a

> hepatoligist-autoimmune specialist. When I got

> there I was (without my knowing) taken into the

> clinic and given a different doctor who knew nothing

> about autoimmune. Two hours later I left and knew

> less than I did before. What a disappointment. So

> sorry to complain but I had my hopes up so high.

> You said I could vent and here it is. I am so angry

> and at the same time so depressed. Oh well. My

> best wishes to everyone as I haven't been getting

> emails. I am now getting them so I will know what

> is happening with everyone.

>

> cherry

>

__________________________________________________

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Hi ,

Welcome! Your letter of all things, brought a smile to my face, good luck in your new job. How fun to be starting the beginning of a new part in your life. Just take it easy in learning your new job, all the politics to go along with it and adjusting to a new town. Remember that most things just dont matter a week later, your health does. Well enough "free advice".

I do not know much about AIH and how it affects young women and pregnancy, but there is a person who posts here and her name (I think) is Loes, she is from the Netherlands and expecting her first baby. From what I understand she/Dr is not overly concerned about the AIH and the development of her baby. I thought what I had read is that AIH actually goes into a remission state during pregnancy. I hope what your last Dr said is not true, my daughter was diagnosed 1/01 and she is only 15. Her name is Elyse. I am curious if you dont mind sharing, when you got your first period, Elyse has not had hers but her grandmother (who she takes after) did not get hers until 18 so I guess on the late side could be normal for her, but it seem that others have wacky periods due to AIH..... Anyway, if you dont want to post your personal business to the masses here, you can reply to me directly, achell@.... But dont be shy, this is a loving group, just helped support thru a hysterectomy, Jodi is having a liver transplant today, etc........ In fact, I would think the people here know more about our ups/downs/health than our families.

A while back, I think it was Jerry who sent a bunch of links about AIH and preganacy. I do not know how to search the archives to look for those, any instuctions anyone???

Have a great day and remember that your Dr is the one whos advice you need, but many here are very well informed, even without the degree!

April

Mom of Elyse (AIH 1/01, age 15)

[ ] (unknown)

I am a 22 year old woman that was diagnosed with AIH over five years ago. I have recently graduated from college and have accepted my first job in the 'real world'. This has led me to move nearly eight hours away from all of my family and friends. I have had to find a new GI doctor and for the first time I am kind of alone in dealing with the many stresses of my disease.

My new doctor recently informed me that by no means should I ever get pregnent, due to my liver cirrhosis. The cirrhosis is not severe at this point, my liver functions are nearly normal and I have maintained an active life style on 15mg of prednisone daily. My former doctor never informed me of the dangers of pregnancy and cirrhosis. I am aware of complications from the meds and such, but I am just wondering if anyone here can give me some insight, either from experience or research, on women with AIH becoming pregnant. I would appreciate it because as a young woman I am kind of disturbed by the idea of never having children. Thanks!

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Cherry, regarding calling back on Monday (when you feel better): I want to lend my support, to tell you that here is one more person who thinks that's the right thing to do. You're not being "difficult" for no reason.

Harper

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Harper, I really don't know. I feel like calling them up today and giving them a piece of my mind. I have been sick 2 yrs. this month with AIH. I was so sick that I didn't know that I was being cared for by drs. that just didn't care. Or, should I say "insensitive". My GP is wonderful but not knowledgeable. He does work with me though with the info from the group. Since I've gotten better to the point of getting on the computer, I have had the good fortune to find all of you with whom I find I can relate and have some of the problems that plague me. I am going to have to start all over again to get to a new dr. My options are none where they are concerned. As I said before my Dr. in HUP doesn't want to see me for a year and none of my complaints are legitimate. So right now, I'm stuck at home in a brain fog with no energy feeling like a real jerk. Thanks so much for your concern cherry Re: [ ] (unknown) Cherry, I'm so sorry to hear about the mix-up with doctors. What options do you have for talking with someone knowledgeable? Harper

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In a message dated 5/17/01 5:32:52 PM Eastern Daylight Time,

Strider3@... writes:

<< Y'all I passed my classes with 2 b's. If I told

you about that research paper that I had to do for a

case study- well I passed it;I got a 90 on it.

>>

Congrats ! Way to go. :-)

Gail

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Hi

My son , also 12, sounds so much like your . We have been doing battle over homework, etc. all year. I had a meeting early in the year with all of his teachers to clue them in to his ocd. A couple ot the teachers were very willing to work with us however it needed to be.

We tried different things. Each teacher has an agenda board in the classroom. I would go in weekly and check each board, get the missing assignments, have complete them and turn them in myself.

's handwriting got to the point no one could read it. He found ways around my efforts. It became futile, so his teachers and I decided that I should back off. Some agreed to take work as it came in.. Now, is doing most of his work, (although, not to his potential, but one hurdle at a time), his handwriting is much improved, and he is happier. I guess I just needed to show him what the consequences were and then back off.

It sounds as though you have tried many different avenues yourself. I wish you luck in finding what works for you!

Becky, WA

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Judy, I am going to call them back on Monday after I see what my doctor says about my ammonia Levels tomorrow. I am going to try to push him a little harder as my brain fog is really bad today. But what they did was not right and I am going to find out what happened. Thanks cherry Re: [ ] (unknown) Cherry, you should call back and let them know thatyou wanted to see the other Dr. and insist theyschedule you an appt. with him or her. We have tofight for our health and not take no for an answer. Judy/pensacola,Fl.--- nanacherry@... wrote:> Hi everyone,> Haven't been in touch because not feeling well.> I was so excited today as I had made an appointment> with an AIH specialist at Jefrerson hospital in> Philadelphia. I made sure that he was a> hepatoligist-autoimmune specialist. When I got> there I was (without my knowing) taken into the> clinic and given a different doctor who knew nothing> about autoimmune. Two hours later I left and knew> less than I did before. What a disappointment. So> sorry to complain but I had my hopes up so high.> You said I could vent and here it is. I am so angry> and at the same time so depressed. Oh well. My> best wishes to everyone as I haven't been getting> emails. I am now getting them so I will know what> is happening with everyone.>> cherry>__________________________________________________

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Good Job

Kathy

(unknown)

>

> Y'all I passed my classes with 2 b's. If I told

> you about that research paper that I had to do for a

> case study- well I passed it;I got a 90 on it.

>

>

>

> =====

> Friends Till The End

>

> __________________________________________________

>

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In a message dated 5/17/01 5:32:44 PM Eastern Daylight Time,

Strider3@... writes:

> Y'all I passed my classes with 2 b's. If I told

> you about that research paper that I had to do for a

> case study- well I passed it;I got a 90 on it.

>

>

>

GREAT job !!!!!

Donna

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Charlyne,

Thanks, thanks so much

--- charlyne1121@... wrote:

> Hi ,

> Great Grade!!

> Charlyne

>

>

> [Non-text portions of this message have been

> removed]

>

>

> --------------------------------------------------

> Checkout our homepage for information,

> bookmarks, and photos of our kids. Share favorite

> bookmarks, ideas, and other information by including

> them. Don't forget, messages are a permanent record

> of the archives for our list.

>

> --------------------------------------------

>

>

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Hi Swapna,

I hope someone else can help with this, since I don't know much about the

behavioral interventions. But I do know of a couple of sites that probably

discuss these:

o Autism Research Institute (ARI) , www.autism.com/ari ARI is a non-profit

organization established in 1967 by Dr. Bernard Rimland to conducting research

on the causes of autism and on methods of preventing, diagnosing and treating

autism and other severe behavioral disorders of childhood. Autism ATEC scoring

form. Many nutrition-oriented articles. DAN! doctor list. Conference tapes.

Newsletter. Extensive links.

o Center for the Study of Autism , www.autism.org Dr. M. Edelson. Many

articles on related disorders, therapeutic and nutritional interventions, and

social issues. Exclusive interviews. Extensive links.

o Oops... Wrong Planet! Syndrome, www.isn.net/~jypsy/ Parent maintained site.

Book list. Many articles, links.

o Beyond Autism, http://trainland.tripod.com Parent maintained site. Many

articles, links. Many autism WebRing links.

If somebody else has ideas, please post them - I'm no expert on this subject.

I was surprised to learn that the blood tests were all normal. That's usually

not the case!

Good luck, K.

| I am very thankful to you for sending the

| information which is very useful for me. ACtually I am

| from India and till now we could not findout the right

| dcotor for our kid, and we feel the information

| provided in websites is so useful. We conducted all

| blood tests for our kid and everything is normal.how

| can we start intervention programs. can u please

| suggest some behaviour intervention programs, or

| clues, they wil be very useful for me.

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Guest guest

Swapna,

You need to direct your concerns about the labwork to Dr. G. There have

been some cases where children had seemingly normal bloodwork and after

intervention became abnormal and then normalized. The immune system is a

complex system. The diagnosis is made on a combination of things NOT

just on lab work. Kathy R Northern New York

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