Taking Meds

[Guest guest]

In a message dated 10/12/00 7:44:15 AM Eastern Daylight Time,

clayvon@... writes:

<< She actually likes swallowing pills >>

Well, that can't be a good thing! Leave it to Ava.

okay with all the pills except Anafranil which is a capsule, and I

guess the texture is too much. I am amazed at how little trouble she gives

us over taking these pills day after day, which change her metabolism and her

thinking, and change her life so little, and which she hates taking, but she

wants to get better so badly.

Ellen

[Guest guest]

Ellen,

Tom takes the generic form of anafranil = clomipramine and its in a pill

form. I always try to buy the generic - I can save about 25% or more this

way.

Of course is fighting to get better - look at her role model! You

are determined to beat this monster! Any follow up on the inpatient

assessment?

wendy, in canada

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

> okay with all the pills except Anafranil which is a capsule, and I

>guess the texture is too much. I am amazed at how little trouble she gives

>us over taking these pills day after day, which change her metabolism and

>her thinking, and change her life so little, and which she hates taking,

>but she wants to get better so badly.

>

>Ellen

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[Guest guest]

>You could try crushing them in a small amount of liquid and putting them into a child's medicine syringe. Then squirting it down the back of his throat.<

Tristan is 7 almost 8 with moderate to severe autism. He will not take meds in any way, we have to disguise them in liquids and even then he sometimes tastes them! We have tried them crushed in foods and he won't on a hunger strike because he didn't trust us anymore. He also won't let the dentist check his teeth with the explorer. We've tried this 3 times, also she hasn't been able to get xrays.

[Guest guest]

Hi,

I had the same problem with my son now 9. He would not take medicines for

us of any form.. He would spit it back at us. We had to hold his mouth

open and force him to take Tylenol when he was young. When he got sick it

was horrible. When he got older we went to medications to help with his

autism. We used chocolate pudding. Hide a pill in the middle of the

pudding or right at the top put a little pudding over it my son would see

the pill and wouldn't take it. Putting it in the middle or on top there is a

chance that he will not even realize he took a pill. (if the pill is big

break the pill down to small pieces.) I don't recommend crushing the pill

into the pudding it gives the pudding a crunchy feeling or can change the

taste.) If he doesn't like chocolate there are the other flavors you can

try. We only gave our son pudding when it was time to take a pill. The

reward for swallowing the first bite was there was more. We now have him to

a point that he will take the pills and swallow them with juice. It took

awhile but we got him there..

You also mentioned the dentist. boy have I been there. I know some moms

have the same problem. We found a dentist who uses a papoose board he gets

strapped in. and she uses a tool to open his mouth. At first he fought I

would say the first 4 or 5 visits. Each time we went he fought less. Now

he gets on the board puts his hands in place and lets her use the explore

tool. He still needs his mouth opened for cleaning but not as much. We are

working on weaning him off the board now. She is a pediatric dentist. She

is wonderful and always talks very soft to him. I hope this helps in some

way... I know those times are hard my son has moderate to severe autism...

have a nice evening

Trish

Re: Taking meds

>You could try crushing them in a small amount of liquid and putting them

into a child's medicine syringe. Then squirting it down the back of his

throat.<

Tristan is 7 almost 8 with moderate to severe autism. He will not take meds

in any way, we have to disguise them in liquids and even then he sometimes

tastes them! We have tried them crushed in foods and he won't on a hunger

strike because he didn't trust us anymore. He also won't let the dentist

check his teeth with the explorer. We've tried this 3 times, also she

hasn't been able to get xrays.

[Guest guest]

Tammy,

Good for you. Be strong and happy. Thank you also. I feel the same way, and have made the same choices.

Kathy in CA

[Guest guest]

You are your best doctor to decide what you can live with and

cannot. I am happy for you that you have your life back! Enjoy it.

Trish

>

> For years I stopped posting on this group because I felt I was the

only one

> who REALLY didn't want to take the meds being prescribed. When I

said things

> like " I am choosing quality over quantity " I always felt like no

one understood.

> I cried many nights thinking " could I be the only one who suffers

such

> horrible side effects that I am more afraid of living like a dead

person than dying

> early?? "

>

> I was compliant for many years and went through a whole host of

horrible side

> effects and events. I was hospitalized multiple times for the

seizures that

> Prednisone and Imuran eventually caused (permanent damage in the

occipital

> portion of my brain) The psychosis that evolves when I take those

drugs transforms

> me into someone I am embarrassed to be and have no recollection of

> afterwould.

>

> I have had 5 liver biopsies and have been evaluated in Manhattan,

New York;

> Long Island, New York, Houston, Texas; Austin, Texas; San ,

Texas; Mayo

> Clinic, Minnesota and the Northwestern University in Chicago. I

have the full

> support of all the doctors at this point to stop taking all meds

(except one).

> Each and every one tells me they could never live the way these

drugs made me

> live.

>

> I am in the 3/4 stage of AIH/ PBC and at least 3 of these doctors

say my

> latest biopsy shows signs of PSC.

>

> I am so grateful to see postings of people who have made the same

decisions I

> have. Convincing my family took the longest.....they always said

they would

> rather me live longer than the alternative.....until the last bout

with

> psychosis....now they all agree enough is enough...

>

> It has been 5 months since I have swallowed a single pill for

anything and I

> feel better than I have in years. MY weight is completely under

control (I

> lost a total of 70 lbs!) so I know I LOOK better as well!

>

> Life is not measured by the breaths you take, but by the moments

that take

> your breath away!

>

> Tammy

> age 44

> AIH/PBC 3/4

> Diagnosed 1996

>

[Guest guest]

I am so sorry to hear you have had such a terrible time with the meds. My side effects are very minor compared to yours, and I feel like I am going crazy, so I can sympathize completely. I respect and understand your decision and congratulate you on being strong enough to make it, as I know it was tough.

Take Care,

Bethanne

[ ] taking meds

For years I stopped posting on this group because I felt I was the only one who REALLY didn't want to take the meds being prescribed. When I said things like "I am choosing quality over quantity" I always felt like no one understood. I cried many nights thinking "could I be the only one who suffers such horrible side effects that I am more afraid of living like a dead person than dying early??"I was compliant for many years and went through a whole host of horrible side effects and events. I was hospitalized multiple times for the seizures that Prednisone and Imuran eventually caused (permanent damage in the occipital portion of my brain) The psychosis that evolves when I take those drugs transforms me into someone I am embarrassed to be and have no recollection of afterwould. I have had 5 liver biopsies and have been evaluated in Manhattan, New York; Long Island, New York, Houston, Texas; Austin, Texas; San , Texas; Mayo Clinic, Minnesota and the Northwestern University in Chicago. I have the full support of all the doctors at this point to stop taking all meds (except one). Each and every one tells me they could never live the way these drugs made me live.I am in the 3/4 stage of AIH/ PBC and at least 3 of these doctors say my latest biopsy shows signs of PSC.I am so grateful to see postings of people who have made the same decisions I have. Convincing my family took the longest.....they always said they would rather me live longer than the alternative.....until the last bout with psychosis....now they all agree enough is enough...It has been 5 months since I have swallowed a single pill for anything and I feel better than I have in years. MY weight is completely under control (I lost a total of 70 lbs!) so I know I LOOK better as well!Life is not measured by the breaths you take, but by the moments that take your breath away!Tammyage 44AIH/PBC 3/4Diagnosed 1996

[Guest guest]

Dear Tammy,

I just read your post today. I'm sorry you are having such a tough time of

it. This disease has so many things that go along with it. I do agree

with you about the quality of life though at this point have not been faced

with those decisions as of yet, but I know what can be coming. My father

and aunt died of this disease and having seen its effect was very distressed

when I received my diagnosis of pbc 2yrs ago. I have my moments but try to

live each day as it comes. It is a great help to talk to others with pbc, I

know I am not alone. There are doctors as we speak, working very hard

researching this disease and I have hope that they will figure this thing

out. Hang in there .

Hugs,

Ellen

dx 2003

stage2/?

>From: TammyAnnG@...

>Reply-

>liver problems

>Subject: [ ] taking meds

>Date: Thu, 10 Nov 2005 10:14:20 EST

>

>For years I stopped posting on this group because I felt I was the only one

>who REALLY didn't want to take the meds being prescribed. When I said

>things

>like " I am choosing quality over quantity " I always felt like no one

>understood.

>I cried many nights thinking " could I be the only one who suffers such

>horrible side effects that I am more afraid of living like a dead person

>than dying

>early?? "

>

>I was compliant for many years and went through a whole host of horrible

>side

>effects and events. I was hospitalized multiple times for the seizures that

>Prednisone and Imuran eventually caused (permanent damage in the occipital

>portion of my brain) The psychosis that evolves when I take those drugs

>transforms

>me into someone I am embarrassed to be and have no recollection of

>afterwould.

>

>I have had 5 liver biopsies and have been evaluated in Manhattan, New York;

>Long Island, New York, Houston, Texas; Austin, Texas; San , Texas;

>Mayo

>Clinic, Minnesota and the Northwestern University in Chicago. I have the

>full

>support of all the doctors at this point to stop taking all meds (except

>one).

>Each and every one tells me they could never live the way these drugs made

>me

>live.

>

>I am in the 3/4 stage of AIH/ PBC and at least 3 of these doctors say my

>latest biopsy shows signs of PSC.

>

>I am so grateful to see postings of people who have made the same decisions

>I

>have. Convincing my family took the longest.....they always said they would

>rather me live longer than the alternative.....until the last bout with

>psychosis....now they all agree enough is enough...

>

>It has been 5 months since I have swallowed a single pill for anything and

>I

>feel better than I have in years. MY weight is completely under control (I

>lost a total of 70 lbs!) so I know I LOOK better as well!

>

>Life is not measured by the breaths you take, but by the moments that take

>your breath away!

>

>Tammy

>age 44

>AIH/PBC 3/4

>Diagnosed 1996

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[Guest guest]

I am going to throw my 2 cents into the medicine debate. If you had

high blood pressure and were at risk for a stroke most people would

not hesitate to take medicine to counter act the hight blood

pressure. And yet taking meds is not necessary. If you do a google

search for reducing high blood pressure without meds you will find a

long list of suggestions of how to do that. Most have to do with

changing diet and lifestyle and would be an ongoing effort. So why

would anyone take meds? Well one reason would be that they don't

want to completely alter their lifestyle. Maybe they have some

inheirited genetic traits that will make it a constant struggle to

try to overcome. Regardless of the reasons some would decide that

medicine is the most effective way to solve the problem. Either way

is not without risk.

Obviously I am making a little analogy to make a point. Taking

medicine is not without risk. Not taking medicine is not without

risk. Deciding to put your child on medicine is a serious decision.

I don't think any parent does so without some trepidation. I don't

have any problem with either decision but I do have a problem with

someone having a knee jerk reaction to meds because it is for a

mental health reason rather than a regular health problem. If your

child had a broken leg you would hesitate to give them the necessary

treatment.

AS kids have brain processing issues. This is fact. There are a lot

of solutions to try to help them. Don't discount one because it

bothers you. My child is on meds now. He has not always been. It

has been necessary to try different ones and constantly adjust doses

because he is growing. It is not an easy fix by any means. But it

does help him. His life is not so much of a constant struggle. He

can control some of his impulses and compulsions better and therefore

does not constantly feel like a failure and a " bad " kid who always

gets in trouble. His self esteem is higher because he is not always

doing " bad " things. Could he possible get the same results with

behavioral therapy. Possibly. I guarantee that it would be very

hard work. I personally don't want my 10 year old son to have to

work so hard just to try to have some illusion of a normal life. So

I choose to use meds and it is not about my life being easier or the

teachers life being easier. It is so my son's life is easier. If

others have found other solutions that work as well. Great! And I

mean that.

My point is that a parent wouldn't feel bad giving their diabetic

child insulin so you should not feel bad giving your child medicine

if it is what they need.

Vickie