New here

[Guest guest]

> >

> > Hi I just joined today thanks to the website that Hannah has. My

> > daughter na was refered to Boston for her helmet and she is

5

> > months old as of Nov 1. Any helpful hints or suggestions?? It

would be

> > greatly appreciated

> >

>

[Guest guest]

Hi New Here,

Congratulations on the birth of your new baby. It's tough enough having two small children without feeling ill added on top. Did your doctor mention having a liver biopsy? I'm not 100% sure, but I think it's the only way to find out for sure.

I hope you find some answers soon

Joan

joan claffey

From: "bubbaboyle2" <webbgirl1@...>Reply- To: Subject: [ ] New HereDate: Thu, 03 Nov 2005 18:26:11 -0000and I'm not even sure I belong yet but have a feeling that I have AIH. I've had Hashimoto's since age 18 and am now 32. After the birth of my son, I stopped menstruating and it took me 2 1/2 years to conceive my second child with the assistance of IVF. He was born in August this year...and that is when my story begins. I had a scheduled c-section that was uneventful. Two weeks later I was in the ER with 103 degree temp and hunched over in pain and had double mastitis. The pain in my belly they said was from an infection in my uterus from the surgery. I was but on IV antibiotics for two days and released only to return the same night with my temp back up to 102. It turns out me, my baby and my husband were all positive for viral meningitis. The day I returned to the hospital I was complaining of pain under my ribs when I took a breath and it shot up to my right shoulder. The doctor's couldn't explain the pain and after about 3 days it was gone. I ended up in the hospital for an additional 6 days and had been treated with super power antibiotics as well as Heparin (they though I had a sepsis infection) before the meningitis diagnosis as well as tylenol and painkillers.Five weeks later I went to my doctor to have labs taken for my thyroid. They called me with urgency to say that my LFT's were high. My ALT was 240 and my AST was 160. I had labs repeated 5 days later and my ALT was 244 and my AST was 153. I had an u/s that was completely fine. I also was negative for Hepatitis A,B and C. I still feel rib pain as well as some chest pain from time to time. The doctor is having me wait until mid-November to have them rechecked. All of my research on the internet keeps pointing me to a diagnosis of AIH. I also have read that tylenol, antibiotics, heparin and viruses can all raise your LFT's so I guess I could potentially just be still coming off from having an inflammed liver from all of the drugs (since I think that is what was causing the 's sign). The waiting game has been extremely hard and I am scared to think of what my life will be like in 20 years if I do indeed have AIH. I was happy to find this site since so many of you are living such productive lives with this terrible disease. You all have given me some hope that even if it is indeed what I have, that it isn't the end of the world and I can pull through despite how awful the prednisone will be. I'll keep you posted on my results. Please let me know of a good liver doc in MA if you know of one.Thanks for listening!

[Guest guest]

Joan,

Thanks for the response. The doctor has not mentioned anything as of yet. We

are still in what he calls " Plan A " which is the hope that all of the medication

and having the virus has temporarily shot up my liver tests. He said if that

doesn't happen we'll need to move to " Plan B " which is investigating other

causes for the elevated tests (and autoimmune hepatitis is part of plan . I

can't think of anything else it could be! I didn't have elevated billirubin so

the gallbladder is out (plus the u/s was fine).

Hi New Here,

Congratulations on the birth of your new baby. It's tough enough having two small children without feeling ill added on top. Did your doctor mention having a liver biopsy? I'm not 100% sure, but I think it's the only way to find out for sure.

I hope you find some answers soon

Joan

joan claffey

From: "bubbaboyle2" <webbgirl1@...>Reply- To: Subject: [ ] New HereDate: Thu, 03 Nov 2005 18:26:11 -0000and I'm not even sure I belong yet but have a feeling that I have AIH. I've had Hashimoto's since age 18 and am now 32. After the birth of my son, I stopped menstruating and it took me 2 1/2 years to conceive my second child with the assistance of IVF. He was born in August this year...and that is when my story begins. I had a scheduled c-section that was uneventful. Two weeks later I was in the ER with 103 degree temp and hunched over in pain and had double mastitis. The pain in my belly they said was from an infection in my uterus from the surgery. I was but on IV antibiotics for two days and released only to return the same night with my temp back up to 102. It turns out me, my baby and my husband were all positive for viral meningitis. The day I returned to the hospital I was complaining of pain under my ribs when I took a breath and it shot up to my right shoulder. The doctor's couldn't explain the pain and after about 3 days it was gone. I ended up in the hospital for an additional 6 days and had been treated with super power antibiotics as well as Heparin (they though I had a sepsis infection) before the meningitis diagnosis as well as tylenol and painkillers.Five weeks later I went to my doctor to have labs taken for my thyroid. They called me with urgency to say that my LFT's were high. My ALT was 240 and my AST was 160. I had labs repeated 5 days later and my ALT was 244 and my AST was 153. I had an u/s that was completely fine. I also was negative for Hepatitis A,B and C. I still feel rib pain as well as some chest pain from time to time. The doctor is having me wait until mid-November to have them rechecked. All of my research on the internet keeps pointing me to a diagnosis of AIH. I also have read that tylenol, antibiotics, heparin and viruses can all raise your LFT's so I guess I could potentially just be still coming off from having an inflammed liver from all of the drugs (since I think that is what was causing the 's sign). The waiting game has been extremely hard and I am scared to think of what my life will be like in 20 years if I do indeed have AIH. I was happy to find this site since so many of you are living such productive lives with this terrible disease. You all have given me some hope that even if it is indeed what I have, that it isn't the end of the world and I can pull through despite how awful the prednisone will be. I'll keep you posted on my results. Please let me know of a good liver doc in MA if you know of one.Thanks for listening!

[Guest guest]

Dear Bubba,

I have now read several of us mentioning that illusive under the breastbone pain,( in the last 2 years or so) with the doctor telling us they do not know where it comes from. Then it goes away, some times never to return, other times it comes back every so often. I've had the same kind of pain 2x in the last 5 years. The first one was not so bad, it went away in a day. With the next one I went to emergency after a night of horrible pain, I thought I surely had something boring through my upper abdomen through to my back, the pain shooting up into my shoulder, not able to breathe.

They sent me home with Darvocet ( powerful pain med??) but they could not find anything wrong. After a couple of day, when my GI finally was able to see me, most of my symptoms had subsided, and he was mad that the emergency doctors did not tell him to see me right away, because he felt whatever it was , was no longer identifiable.

So I have no idea what it could have been! And according to the doctor he can't guess either. Or maybe he does no like to guess. They did take a blood test, xray. and something else at emergency and then the GI doctor did an MRI ( I think), and blood test again, but nothing was out of whack.

So we continue our daily travels, one step at a time, trying to out guess the professionals. It is surprising how often the patients know better than the doctor, we just do not have the name for it! Nor the possible medication.

Clara from OR

[ ] New Here

and I'm not even sure I belong yet but have a feeling that I have AIH. I've had Hashimoto's since age 18 and am now 32. After the birth of my son, I stopped menstruating and it took me 2 1/2 years to conceive my second child with the assistance of IVF. He was born in August this year...and that is when my story begins. I had a scheduled c-section that was uneventful. Two weeks later I was in the ER with 103 degree temp and hunched over in pain and had double mastitis. The pain in my belly they said was from an infection in my uterus from the surgery. I was but on IV antibiotics for two days and released only to return the same night with my temp back up to 102. It turns out me, my baby and my husband were all positive for viral meningitis. The day I returned to the hospital I was complaining of pain under my ribs when I took a breath and it shot up to my right shoulder. The doctor's couldn't explain the pain and after about 3 days it was gone. I ended up in the hospital for an additional 6 days and had been treated with super power antibiotics as well as Heparin (they though I had a sepsis infection) before the meningitis diagnosis as well as tylenol and painkillers.Five weeks later I went to my doctor to have labs taken for my thyroid. They called me with urgency to say that my LFT's were high. My ALT was 240 and my AST was 160. I had labs repeated 5 days later and my ALT was 244 and my AST was 153. I had an u/s that was completely fine. I also was negative for Hepatitis A,B and C. I still feel rib pain as well as some chest pain from time to time. The doctor is having me wait until mid-November to have them rechecked. All of my research on the internet keeps pointing me to a diagnosis of AIH. I also have read that tylenol, antibiotics, heparin and viruses can all raise your LFT's so I guess I could potentially just be still coming off from having an inflammed liver from all of the drugs (since I think that is what was causing the 's sign). The waiting game has been extremely hard and I am scared to think of what my life will be like in 20 years if I do indeed have AIH. I was happy to find this site since so many of you are living such productive lives with this terrible disease. You all have given me some hope that even if it is indeed what I have, that it isn't the end of the world and I can pull through despite how awful the prednisone will be. I'll keep you posted on my results. Please let me know of a good liver doc in MA if you know of one.Thanks for listening!

[Guest guest]

, Welcome! Where are you located? I know alot of parents who

incorporate ABA programs on their own at home. I know that personally I did

Floortime with my now 9 year old son. Pam

[Guest guest]

Joan,

Thanks for the response. The doctor has not mentioned anything as of

yet. We are still in what he calls " Plan A " which is the hope that

all of the medication and having the virus has temporarily shot up my

liver tests. He said if that doesn't happen we'll need to move

to " Plan B " which is investigating other causes for the elevated tests

(and autoimmune hepatitis is part of plan . I can't think of

anything else it could be! I didn't have elevated billirubin so the

gallbladder is out (plus the u/s was fine).

[Guest guest]

Hi Clara -

It is soooo good to be understood and not looked at like I am

crazy! I still feel slight rib pain and sometimes it is on the left

side oddly enough. I have a feeling it was a " flare up " when I was

in the hospital due to the virus I was fighting off.

I have a question, do you all find that you catch colds and viruses

more easily now that your immune systems are supressed? Are you

allowed to get flu shots? I want to get one because my kids are so

young, but not sure if I should pending the outcome of my testing.

Also, what were your levels at the time you were diagnosed? Do you

think it is possible that my levels could be elevated due to the

medications and virus I had??

>

> Dear Bubba,

>

> I have now read several of us mentioning that illusive under the

breastbone pain,( in the last 2 years or so) with the doctor telling

us they do not know where it comes from. Then it goes away, some

times never to return, other times it comes back every so often.

I've had the same kind of pain 2x in the last 5 years. The first

one was not so bad, it went away in a day. With the next one I

went to emergency after a night of horrible pain, I thought I surely

had something boring through my upper abdomen through to my back,

the pain shooting up into my shoulder, not able to breathe.

>

> They sent me home with Darvocet ( powerful pain med??) but they

could not find anything wrong. After a couple of day, when my GI

finally was able to see me, most of my symptoms had subsided, and he

was mad that the emergency doctors did not tell him to see me right

away, because he felt whatever it was , was no longer identifiable.

>

> So I have no idea what it could have been! And according to the

doctor he can't guess either. Or maybe he does no like to guess.

They did take a blood test, xray. and something else at emergency

and then the GI doctor did an MRI ( I think), and blood test again,

but nothing was out of whack.

>

> So we continue our daily travels, one step at a time, trying to

out guess the professionals. It is surprising how often the

patients know better than the doctor, we just do not have the name

for it! Nor the possible medication.

>

> Clara from OR

>

>

> [ ] New Here

>

>

> and I'm not even sure I belong yet but have a feeling that I

have

> AIH. I've had Hashimoto's since age 18 and am now 32. After

the

> birth of my son, I stopped menstruating and it took me 2 1/2

years

> to conceive my second child with the assistance of IVF. He was

born

> in August this year...and that is when my story begins. I had a

> scheduled c-section that was uneventful. Two weeks later I was

in

> the ER with 103 degree temp and hunched over in pain and had

double

> mastitis. The pain in my belly they said was from an infection

in

> my uterus from the surgery. I was but on IV antibiotics for two

> days and released only to return the same night with my temp

back up

> to 102. It turns out me, my baby and my husband were all

positive

> for viral meningitis. The day I returned to the hospital I was

> complaining of pain under my ribs when I took a breath and it

shot

> up to my right shoulder. The doctor's couldn't explain the pain

and

> after about 3 days it was gone. I ended up in the hospital for

an

> additional 6 days and had been treated with super power

antibiotics

> as well as Heparin (they though I had a sepsis infection) before

the

> meningitis diagnosis as well as tylenol and painkillers.

>

> Five weeks later I went to my doctor to have labs taken for my

> thyroid. They called me with urgency to say that my LFT's were

> high. My ALT was 240 and my AST was 160. I had labs repeated 5

> days later and my ALT was 244 and my AST was 153. I had an u/s

that

> was completely fine. I also was negative for Hepatitis A,B and

C. I

> still feel rib pain as well as some chest pain from time to

time.

> The doctor is having me wait until mid-November to have them

> rechecked. All of my research on the internet keeps pointing me

to

> a diagnosis of AIH. I also have read that tylenol, antibiotics,

> heparin and viruses can all raise your LFT's so I guess I could

> potentially just be still coming off from having an inflammed

liver

> from all of the drugs (since I think that is what was causing

the

> 's sign). The waiting game has been extremely hard and I

am

> scared to think of what my life will be like in 20 years if I do

> indeed have AIH. I was happy to find this site since so many of

you

> are living such productive lives with this terrible disease.

You

> all have given me some hope that even if it is indeed what I

have,

> that it isn't the end of the world and I can pull through

despite

> how awful the prednisone will be.

>

> I'll keep you posted on my results. Please let me know of a

good

> liver doc in MA if you know of one.

>

> Thanks for listening!

>

>

>

>

>

>

[Guest guest]

Hi bubba,

I am pretty new to liver disease but have another autoimmune disease that was dx

7 years ago. I find that I get sick much easier than anyone else in my family

and it always seems to hold on longer to me than anyone else!

My doctor has always said that flu shots are not only ok, but necessary to

someone with a compromised immune system. The only vaccines you should worry

about are 'live' vaccines. The flu shot is not live.

Zanna

[Guest guest]

I have the same idea "flare up", but I sure wish I knew what caused it.

YES! Flue shots are recommended, and I guess not easy to get this year.

Interestingly enough my levels of, all the ALT etc, have never been high, but I still had the blotches, ( discoid Lupus, very little in the last year) and the arthritis, and the diabetes, tired all the time, bleeding internally from polyps and/or ulcers, and the enlarged spleen and liver, asthma ( caughing, more like post nasal drip that causes deep congestion all the time, ) and the final diagnoses with cirrhosis of the liver (with biopsy). My Hep does not give me a stage, just that I am still functioning, not to panic!

I am sure the Virus you mentioned will play havoc with your elevated test results.

I just keep going back to the doctors, my My Primary Care Physicial keeps sending me here there and everywhere.

My doctor has my on Ursodial, but I think my Milk Thisle (which my insurance does not pay for ) is a crucial element in my med program. I started taking it when I was first diagnosed with Fatty Liver Cirrhosis. Although I do have to admit I have almost become a vegeterian, just because I feel better not eating beef. I keep trying though, there is nothing better than a nice juicy Prime Rib. Hmmm Just the thought of it is making my stomach feel upset!

Wishing you a better future once you get some meds that work, Clara,from OR

[ ] New Here> > > and I'm not even sure I belong yet but have a feeling that I have > AIH. I've had Hashimoto's since age 18 and am now 32. After the > birth of my son, I stopped menstruating and it took me 2 1/2 years > to conceive my second child with the assistance of IVF. He was born > in August this year...and that is when my story begins. I had a > scheduled c-section that was uneventful. Two weeks later I was in > the ER with 103 degree temp and hunched over in pain and had double > mastitis. The pain in my belly they said was from an infection in > my uterus from the surgery. I was but on IV antibiotics for two > days and released only to return the same night with my temp back up > to 102. It turns out me, my baby and my husband were all positive > for viral meningitis. The day I returned to the hospital I was > complaining of pain under my ribs when I took a breath and it shot > up to my right shoulder. The doctor's couldn't explain the pain and > after about 3 days it was gone. I ended up in the hospital for an > additional 6 days and had been treated with super power antibiotics > as well as Heparin (they though I had a sepsis infection) before the > meningitis diagnosis as well as tylenol and painkillers.> > Five weeks later I went to my doctor to have labs taken for my > thyroid. They called me with urgency to say that my LFT's were > high. My ALT was 240 and my AST was 160. I had labs repeated 5 > days later and my ALT was 244 and my AST was 153. I had an u/s that > was completely fine. I also was negative for Hepatitis A,B and C. I > still feel rib pain as well as some chest pain from time to time. > The doctor is having me wait until mid-November to have them > rechecked. All of my research on the internet keeps pointing me to > a diagnosis of AIH. I also have read that tylenol, antibiotics, > heparin and viruses can all raise your LFT's so I guess I could > potentially just be still coming off from having an inflammed liver > from all of the drugs (since I think that is what was causing the > 's sign). The waiting game has been extremely hard and I am > scared to think of what my life will be like in 20 years if I do > indeed have AIH. I was happy to find this site since so many of you > are living such productive lives with this terrible disease. You > all have given me some hope that even if it is indeed what I have, > that it isn't the end of the world and I can pull through despite > how awful the prednisone will be. > > I'll keep you posted on my results. Please let me know of a good > liver doc in MA if you know of one.> > Thanks for listening!> > > > > >

[Guest guest]

In a message dated 11/4/2005 10:52:08 AM Eastern Standard Time,

trappyjean@... writes:

Good point about

incorporating ABA programs at home

, alot of times when the program works at home and is successful, it is

good solid proof when you approach the school and ask them to implement

something similar. Pam

[Guest guest]

Hi Pam!

I live in Southeastern CT. Good point about

incorporating ABA programs at home. That may be a way

to get her what she needs. I also have a 6 mnth old so

I want to be sure I can give her all the time she

needs with this. I am definetly going to look into it

though. Thanks for you repsponse and nice to meet

you:)

-sarah

--- ppanda65@... wrote:

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

, Welcome! Where are you located? I know alot

of parents who

incorporate ABA programs on their own at home. I know

that personally I did

Floortime with my now 9 year old son. Pam

[Guest guest]

From what you have written, I doubt you have AIH. The

liver levels you mentioned, while above normal, are

not so high and certainly not high enough to cause any

real discomfort. If you did have AIH your LFTs would

increase over time without treatment and you would

expect bilirubin also to rise.

To be honest a liver biopsy would be crazy as these

have numerous possible complications, including a rare

chance of death. There are certain anibody tests that

can be done that poin t to an indication of AIH. I´´m

afraid I forget what they are but searcht he web and

youll find it. Certainly your GGT should be elevated

and there are others (IGG? SMA?). Make sure you

consult a knowledgeable doctor before you even think

of a liver biopsy.

--- bubbaboyle2 <webbgI doubt you irl1@...>

wrote:

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

and I'm not even sure I belong yet but have a feeling

that I have

AIH. I've had Hashimoto's since age 18 and am now 32.

After the

birth of my son, I stopped menstruating and it took me

2 1/2 years

to conceive my second child with the assistance of

IVF. He was born

in August this year...and that is when my story

begins. I had a

scheduled c-section that was uneventful. Two weeks

later I was in

the ER with 103 degree temp and hunched over in pain

and had double

mastitis. The pain in my belly they said was from an

infection in

my uterus from the surgery. I was but on IV

antibiotics for two

days and released only to return the same night with

my temp back up

to 102. It turns out me, my baby and my husband were

all positive

for viral meningitis. The day I returned to the

hospital I was

complaining of pain under my ribs when I took a breath

and it shot

up to my right shoulder. The doctor's couldn't

explain the pain and

after about 3 days it was gone. I ended up in the

hospital for an

additional 6 days and had been treated with super

power antibiotics

as well as Heparin (they though I had a sepsis

infection) before the

meningitis diagnosis as well as tylenol and

painkillers.

Five weeks later I went to my doctor to have labs

taken for my

thyroid. They called me with urgency to say that my

LFT's were

high. My ALT was 240 and my AST was 160. I had labs

repeated 5

days later and my ALT was 244 and my AST was 153. I

had an u/s that

was completely fine. I also was negative for Hepatitis

A,B and C. I

still feel rib pain as well as some chest pain from

time to time.

The doctor is having me wait until mid-November to

have them

rechecked. All of my research on the internet keeps

pointing me to

a diagnosis of AIH. I also have read that tylenol,

antibiotics,

heparin and viruses can all raise your LFT's so I

guess I could

potentially just be still coming off from having an

inflammed liver

from all of the drugs (since I think that is what was

causing the

's sign). The waiting game has been extremely

hard and I am

scared to think of what my life will be like in 20

years if I do

indeed have AIH. I was happy to find this site since

so many of you

are living such productive lives with this terrible

disease. You

all have given me some hope that even if it is indeed

what I have,

that it isn't the end of the world and I can pull

through despite

how awful the prednisone will be.

I'll keep you posted on my results. Please let me

know of a good

liver doc in MA if you know of one.

Thanks for listening!

[Guest guest]

I think that ABA Programs can very intense or modified, depending on the

needs of the child. I know that Roxanna has a little bit more experience with

this than I do. We did the Floortime model at home. Pam

[Guest guest]

Thanks Pam. What do you all think of ABA programs? My husband read about it

and

said it was very intense and may be really harsh? I will read up on treatments

more

this weekend. Any input would be great.

-

>

>

> In a message dated 11/4/2005 10:52:08 AM Eastern Standard Time,

> trappyjean@s... writes:

>

> Good point about

> incorporating ABA programs at home

>

>

> , alot of times when the program works at home and is successful, it is

> good solid proof when you approach the school and ask them to implement

> something similar. Pam

>

>

>

[Guest guest]

Each person is different in how diseases present themselves. When I

was diagnosed with Grave's Disease (autoimmune thyroid disease), the

doctors had been baffled as I showed symptoms of both high and low

thyroid. I had no AIH symptoms other than high LFT's and fatigue.

I did have PBC symptoms - insane itching, fatigue, etc. The

pathologist misread the biopsy and said I had AIH with no sign of

PBC.

People with PBC (primary biliary cirrhosis) present with a positive

AMA, but in 5% the AMA is negative.

My AIH is in remission now - has been for 1.5 years. I treated with

Prednisone first which had no effect. Treated with Imuran and the

numbers started dropping. My GI referred me to a hep who reread the

biopsy and said I had AIH/PBC Overlay. He started me on Urso and

the LFT's dramatically began dropping. He weaned off the Imuran.

Two years later and now my LFT's are all within normal.

You asked about doctors in MA, but don't say where you are in MA.

My hep is Dr. Goldberg at the Lahey in Burlington. He is

excellent, takes time to explain everything and to answer all your

questions.

Take care,

Sandy C.

[Guest guest]

I took hydroxy for two years, I remember when I first started to take it the RD

told me it would take at least three months to build up in my system and start

to feel the effects.

I switched RD doctors about 5 months ago and she could not beleive i was taking

that drug.

She told me that it was so old fashioned thta she has not prescribed it for 15

years. She drug her whole office staff into see me because, she could not

beleive I was taking it.

I do have trouble with drug reactions, i now take, mobic, ultracet and humeria.

I took a while to hit upon the right drug combination. Sue G

Sue <susan98@...> wrote:

Hello all, My name is Sue and I have recently been diagnosed with MCTD

(lupus, osteo, and RA, still waiting on my kidney results) I have been

put on Hydroxychlorequine and multiple vitimins and such. Since I have

only been taking the Hydroxy for about a week, still don't feel any

affects except side ones from the meds. that I hope disappear soon.

Hugz sue

[Guest guest]

> Wow, I guess I better ask my Dr. next time I see him and see what his

> reasonings are, or at least ask him about it.

Hugz sue in WA

I switched RD doctors about 5 months ago and she could not beleive i was

> taking that drug.I took a while to hit upon the right drug combination.

> Sue G

[Guest guest]

,

Its sad when docs bash drugs that are very effective for many and for many

more that suffer from allergies and severe side effects to " the so-called

newer, better and more expensive " drugs.

You rheummy sounds like the last rheummy I had. I called him Dr. Bonehead.

He forced me on drugs that I had serious and life threatening side effects

too. Refuse to listen to my complaints of problems. He just keep adding more

and more drugs to counter act the side effects. Finally with constant

diarrhea, vomiting, dizziness, headaches, mouth sores, eye sores, throat sores,

genitalia sores, skin rashes, and constant cough to the point I could not talk,

I went to see my PCP and STOPPED all meds. I was having serious and

potential fatal side effect called drug induced pneumonitis which can do

permenent

damage to your lungs. All my side effects were from Methotrexate. My other

side effects we have no clue cause I was on so many drugs. Enbrel was not

effective and Arava was causing liver problems.

So overly aggressive treating docs are not necessarily good docs or doing

treatment that is appropriate for all patients. Mine nearly killed me and did

it with a very arrogant nasty attitude and treated me as if I was stupid!

Your statement about plaquinil rings home the same feeling.

I am currently on plaquinil.....its working well for me. with NO side

effects. I am not having to take a cocktail of drugs either to get the effect

my

doc wants nore do I need a 10 other drugs to counter act side effects either.

Its one of the first line treatment drugs. Just because its an old

treatment does not make one not work trying. Its also one of the least

expensive

treatments as well. Keep in mind not everyone has money or insurance coverage

for Humira, Enbrel or Remicaide. Even many of the insurance companies will

not pay for the new biologics until you failed on the first line drugs which

would be plaquinil or Methotrexate.

I personally believe in keeping it simply. I would not want to over kill on

meds. I think its better to reserve the heavy duty meds until a time when

they are really needed. In my case my first two rheummies did not do that and

went the overkill route. Now none of the heavy duty meds work for me.....my

immune system simply overrides them. I have a long list of meds that do not

work!

I have always asked this question and get no answer...so what do you do when

arava, methotrexate, enbrel, remicaide, humira, kineret, and rituxin do not

work and you can not add any more meds into the cocktail? Do you just sit

and wait for the next hopeful drug to come to market?

I think the insurance companies are right to control the use of some of

these meds and develop a standard treatment plan.

Toni in Texas

In a message dated 11/7/2005 6:16:34 A.M. Central Standard Time,

writes:

Date: Sun, 6 Nov 2005 15:10:03 -0800 (PST)

From: susan smith <bizzare48@...>

Subject: Re: New Here

I took hydroxy for two years, I remember when I first started to take it the

RD told me it would take at least three months to build up in my system and

start to feel the effects.

I switched RD doctors about 5 months ago and she could not beleive i was

taking that drug.

She told me that it was so old fashioned thta she has not prescribed it for

15 years. She drug her whole office staff into see me because, she could not

beleive I was taking it.

I do have trouble with drug reactions, i now take, mobic, ultracet and

humeria.

I took a while to hit upon the right drug combination. Sue G

Sue <susan98@...> wrote:

Hello all, My name is Sue and I have recently been diagnosed with MCTD

(lupus, osteo, and RA, still waiting on my kidney results) I have been

put on Hydroxychlorequine and multiple vitimins and such. Since I have

only been taking the Hydroxy for about a week, still don't feel any

affects except side ones from the meds. that I hope disappear soon.

Hugz sue

[Guest guest]

Hi Liz

My son got banded at 10 mths. He's had it on for about 1 mth now, and we are seeing great improvement already. Maybe not as much as if he had been younger, but for his age his improvements have been really good so far. Your not too late. You can band up to 24 mths I believe, it just might take longer with an older baby because of his growth rate. If he needs a band and you got your script go for it. Better late then never. Louise

Soyscentials" Because it pays to light the way to a "soot free" future!"For a FREE votive go to www.Familysoycandles.com and enter my candle drawing

New Here

Just found out my son needs helmet for his flat spot. Have been fighting with doctor for months trying to get a referral. So now he is 10 months old, and I am afraid we are too late. Looking for any good info on this from people who started with older kids... or any good advice at all. thanks!LizMom to Shane

[Guest guest]

Hi Liz

My son got banded at 10 mths. He's had it on for about 1 mth now, and we are seeing great improvement already. Maybe not as much as if he had been younger, but for his age his improvements have been really good so far. Your not too late. You can band up to 24 mths I believe, it just might take longer with an older baby because of his growth rate. If he needs a band and you got your script go for it. Better late then never. Louise

Soyscentials" Because it pays to light the way to a "soot free" future!"For a FREE votive go to www.Familysoycandles.com and enter my candle drawing

New Here

Just found out my son needs helmet for his flat spot. Have been fighting with doctor for months trying to get a referral. So now he is 10 months old, and I am afraid we are too late. Looking for any good info on this from people who started with older kids... or any good advice at all. thanks!LizMom to Shane

[Guest guest]

Liz,We have many babies here that started at this age and have recieved excellent correction. True it goes a bit slower at this age, but it can work well. Here is a study on Treatment of the older infant that may help you feel better. Good Luck and keep us posted on how things go. CAROLG >> Just found out my son needs helmet for his flat spot. Have been > fighting with doctor for months trying to get a referral. So now he is > 10 months old, and I am afraid we are too late. > > Looking for any good info on this from people who started with older > kids... or any good advice at all. > > thanks!> > Liz> Mom to Shane>

[Guest guest]

Liz,We have many babies here that started at this age and have recieved excellent correction. True it goes a bit slower at this age, but it can work well. Here is a study on Treatment of the older infant that may help you feel better. Good Luck and keep us posted on how things go. CAROLG >> Just found out my son needs helmet for his flat spot. Have been > fighting with doctor for months trying to get a referral. So now he is > 10 months old, and I am afraid we are too late. > > Looking for any good info on this from people who started with older > kids... or any good advice at all. > > thanks!> > Liz> Mom to Shane>

[Guest guest]

We started at 8 months in a Hanger helmet and are just about finished.

We're so glad we did it. You should har from other moms who started

before their kids were one. A side benefit of starting late is that

they learn to walk with the helmet on so that saves a lot of heartache

and bumps.

Shame on your doctor!!!

Columbia, SC

Mom to Jack (14 months)

Hanger helmeted since May

>

> Just found out my son needs helmet for his flat spot. Have been

> fighting with doctor for months trying to get a referral. So now he

is

> 10 months old, and I am afraid we are too late.

>

> Looking for any good info on this from people who started with older

> kids... or any good advice at all.

>

> thanks!

>

> Liz

> Mom to Shane

>

[Guest guest]

We started at 8 months in a Hanger helmet and are just about finished.

We're so glad we did it. You should har from other moms who started

before their kids were one. A side benefit of starting late is that

they learn to walk with the helmet on so that saves a lot of heartache

and bumps.

Shame on your doctor!!!

Columbia, SC

Mom to Jack (14 months)

Hanger helmeted since May

>

> Just found out my son needs helmet for his flat spot. Have been

> fighting with doctor for months trying to get a referral. So now he

is

> 10 months old, and I am afraid we are too late.

>

> Looking for any good info on this from people who started with older

> kids... or any good advice at all.

>

> thanks!

>

> Liz

> Mom to Shane

>

[Guest guest]

Thanks to everyone for the info. If I can.. can I ask another

question?

My specialist says that I need to cut his hair for this... but I can

not find anything about that anywhere. I'd rather not cut his

hair... does anyone know about this?

Also, anyone know anything about dealing with sensative skin? i've

read that there are some problems associated witht this. he tends to

be fairly sensative... any tips on preventing soarness?

o.k. that was 2 questions.

> >

> > Just found out my son needs helmet for his flat spot. Have been

> > fighting with doctor for months trying to get a referral. So now

he

> is

> > 10 months old, and I am afraid we are too late.

> >

> > Looking for any good info on this from people who started with

older

> > kids... or any good advice at all.

> >

> > thanks!

> >

> > Liz

> > Mom to Shane

> >

>