need advice please

[Guest guest]

" gayevanzyl "

Where do you live? obviously not in USA and probably not in most of

the UK countries. There are so many wonderful drugs available to both

USA and most UK countries. You might get your doctor to read up on

the drugs available on the internet and recommend one that you could

order. And the doctor needs to make sure your country will allow the

specific med to be mailed/shipped into you. Its not cheap, but there

is so much out there now, its a shame to be without the relief you

need.

And do you have friends or relatives in UK or USA you could visit and

see a doctor with access to the wider array of drugs. Asthma does

cause problems in medicine choices.

Give us some more info so that we can help you fine either something

available in your country or recommend so alternatives. There are

some on this board that use readily availible herbals with good

results. JudiRose

>

> In my country we do not have Enbrel, Humira or Remicade. I was on

> MTX but had terrible side effects and it was not working anyway so

I

> am not taking it anymore. Also I can only take very basic pain

> medication because anything with codeine or ibuprofen makes my

> asthma worse. My Dr is willing to try anything but we are limited

to

> what is available.

> I daily see my quality of life going down the drain and don't know

> what to do about it.

> Any suggestions will be very welcome.

[Guest guest]

I live in South Africa. My doctor did mention to me that she has

once before tried to get medication from another country but it was

not approved/allowed by our medicine board. She also said that they

were in the process of approving something new for PA (did not say

what)but that it would probably only be available in 2005. Gaye

[Guest guest]

Oh, Gaye, thats seems so far off. I hope your doctor can help enough

with the pain until that one comes available. I'll ber praying for

you. JudiRose

> I live in South Africa. My doctor did mention to me that she has

> once before tried to get medication from another country but it was

> not approved/allowed by our medicine board. She also said that they

> were in the process of approving something new for PA (did not say

> what)but that it would probably only be available in 2005. Gaye

[Guest guest]

Well it is possible. 11 rounds with nothing noticed at all? What dose are you

using? And is it being given on AC protocol?

Also reflux can be treated in other ways. Ie: testing her for H.Pylori bacteria

(this is treatable naturally or with antibiotics), treating for parasites,

giving digestive enzymes with food. Lack of digestive enzymes, parasites and

h.pylori are all reasons for reflux. As are food allergies.

I'd worry that with reduce stomach acid...she isn't digesting her food either

and that could lead to deficiencies.

Vitamin Research Products website has a nice article database you can search and

they have some good information on reflux, h.pylori etc. Mastic gum is what gets

rid of h.pylor infection. And they do sell products that treat it on VRP>

>

> Hi

>

> Does anyone know whether DMSA and/or ALA absorption is reduced if there is no

stomach acid? My daughter is on Omeprazole (gastric pump inhibitor) for reflux

and it makes sense to me that DMSA and ALA won't be properly absorbed if there

is no stomach acid.....but I am just a mother and not in the medical field, so I

may be incorrect. Her stomach acid is reduced to virtually nothing while being

on Omeprazole. She has been on 11 rounds of DMSA and ALA and we have not

noticed any changes. Is it because of the Omeprazole? Any advice will be

greatly appreciated.

>

[Guest guest]

Yes, 11 rounds with nothing noticed at all using AC protocol and using 20mg

DMSA and 20mg ALA every 3 hours during day and stretching to 4 hours at night.

Her reflux is because of her stiff muscles (hypertonia) which I believe mercury

toxicity is also a contributing factor. Her hypertonia started after

vaccinations and we have determined heavy metal toxicity via doing hair analysis

through Doctor's Data (we live in South Africa). All her muscles are affected

i.e. eyes, arms, trunk, legs, probably also muscle that pushes food down. She

does not have autism at all.....so the metals must have affected her central

nervous system in another way.

I am thinking to use reflux meds for 4 days and then take her off for the 3 days

she is on AC protocol. Please, need info!

> >

> > Hi

> >

> > Does anyone know whether DMSA and/or ALA absorption is reduced if there is

no stomach acid? My daughter is on Omeprazole (gastric pump inhibitor) for

reflux and it makes sense to me that DMSA and ALA won't be properly absorbed if

there is no stomach acid.....but I am just a mother and not in the medical

field, so I may be incorrect. Her stomach acid is reduced to virtually nothing

while being on Omeprazole. She has been on 11 rounds of DMSA and ALA and we

have not noticed any changes. Is it because of the Omeprazole? Any advice will

be greatly appreciated.

> >

>

[Guest guest]

We were able to stop our reflux medications through accupressure.

Imagine there is a line across your childs nipples - and find the center of

that. Follow down the center line of her body halfway between that chest line

and her bellybutton. place your finger there and gently press and make small

clockwise circles.(don't lift the finger - just move it around) gentle pressure

- if there was a piece of paper between your finger and her chest, it would just

be held snug - it would not crease from you pressing. Do this twice a day for

three minutes. My daughter (who was worse) would not tolerate this - we waited

till she was asleep. My son lets us as he feels the relief almost immediately.

It is so hard to watch the pain of reflux. I hope you find something that helps

before the chelation does its work.

> > >

> > > Hi

> > >

> > > Does anyone know whether DMSA and/or ALA absorption is reduced if there is

no stomach acid? My daughter is on Omeprazole (gastric pump inhibitor) for

reflux and it makes sense to me that DMSA and ALA won't be properly absorbed if

there is no stomach acid.....but I am just a mother and not in the medical

field, so I may be incorrect. Her stomach acid is reduced to virtually nothing

while being on Omeprazole. She has been on 11 rounds of DMSA and ALA and we

have not noticed any changes. Is it because of the Omeprazole? Any advice will

be greatly appreciated.

> > >

> >

>

[Guest guest]

Hi Guys,

I could really do with some help...

My ds is Adam and was first diagnosed with Sensory Intergration Disorder at age

4, then the diagnosis of Aspergers followed a few months later. Adam was also

diagnosed with Adhd and dyspraxia last Christmas just before his 6th Birthday.

He has been on 10mg of Strattera for adhd symptoms which has really improved

his attention span and hyperactivity levels. The problem is and has always been

but it seems to be getting worse is his anxiety which I know can go hand in hand

with As. At times of stress and change Adam's anxiety levels go through the

roof. So his psychiatirist suggested for the 2nd time we try him with some meds

for anxiety. The first time we said no thanks we will manage it ourselves. She

has suggested Fluoxetine(prozac)Syrup, a very small dose only 1.25 mls to start

then increasing to 2.5mls the next week. My husband and I are both in agreement

in that treating the anxiety with meds is the last resort. But the fact is Adam

does not cope to well outside of our home, he just wants to stay home most of

the time and has no desire to even go for walks or to the park anymore. We have

decided to wait another week as there has been a slight improvement in his

anxiety levels at home and at school. Is there any one out there who is

medicating for anxiety and have you seen improvements or not. The psych also

said rispodone (spelling )is a good med for anxiety but it does not mix well

with stratter just ritilan. Any advice would be good as me and my hubby just

want to do the right thing by him. Thank you for taking the time to read this.

Estelle

[Guest guest]

My son has been on risperdol for almost a year now, and I personally don't think it's worked for him at all. It's supposed to be a mood stabilizer, and limit the meltdowns, but I have never seen an improvement with his behavior on this drug. He takes it in combination with adderol, which I think works a little bit (the adderol alone) for his hyperactivity, but doesn't do anything for his meltdowns.

I'm in the process of weining him off all drugs, because I'd like to see how he is without it, since his behaviors haven't improved in the last 2 years that he's been on them. Anyone else have a child who hasn't responded to drugs?

From: estellelws <estellelws@...> Sent: Sunday, October 4, 2009 5:51:19 AMSubject: ( ) need advice please

Hi Guys,I could really do with some help...My ds is Adam and was first diagnosed with Sensory Intergration Disorder at age 4, then the diagnosis of Aspergers followed a few months later. Adam was also diagnosed with Adhd and dyspraxia last Christmas just before his 6th Birthday.He has been on 10mg of Strattera for adhd symptoms which has really improved his attention span and hyperactivity levels. The problem is and has always been but it seems to be getting worse is his anxiety which I know can go hand in hand with As. At times of stress and change Adam's anxiety levels go through the roof. So his psychiatirist suggested for the 2nd time we try him with some meds for anxiety. The first time we said no thanks we will manage it ourselves. She has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start then increasing to 2.5mls the next week. My husband and I are both in agreement in that treating the anxiety

with meds is the last resort. But the fact is Adam does not cope to well outside of our home, he just wants to stay home most of the time and has no desire to even go for walks or to the park anymore. We have decided to wait another week as there has been a slight improvement in his anxiety levels at home and at school. Is there any one out there who is medicating for anxiety and have you seen improvements or not. The psych also said rispodone (spelling )is a good med for anxiety but it does not mix well with stratter just ritilan. Any advice would be good as me and my hubby just want to do the right thing by him. Thank you for taking the time to read this.Estelle

[Guest guest]

As my Aspie also has OCD and I'm in a group for that also, I know that many with

OCD that have ADHD also have to sometimes deal with the ADHD med increasing the

OCD (it's an anxiety disorder) and sometimes vice-versa. But many are on meds

for both, it can just be a " balancing act " to get the right dosages of each or

the right med combination.

One thought I had that is non-med - inositol powder. Considered to be in the B

vitamin family. I used it at one time for my son's OCD (it's 50/50 whether it

will help OCD or not). I know some adults who have taken it said they feel more

calm so you might try it, see if it helps with your son. Anyway, if you decide

to try it, it's best to buy it online as it's much cheaper and it is hard to

find locally and usually more $$ if you do find it. I just mixed the powder in

with a cup of Kool-aid as it has a sweet taste but many mix it with other drinks

(don't try apple juice though, it fizzes!). Here are some links I quickly

googled, you can research more:

http://www.geocities.com/spiroll2/inositol.html

http://www.nutritionalsupplementscenter.com/info/HealthSupplement/inositol.html

I'll add that if you try it, start it low as it can cause stomach upset/gas. I

think I started with 1/2 tsp the first 2 or 3 days and then went to a whole tsp,

and so on. There are different brands you can try, but will say that we used

Source Naturals and it mixed well, dissolved well. Some brands we tried, the

powder didn't mix/dissolve as well. And make sure you get " powder " as I

accidentally ordered " crystals " once and they don't dissolve as well as powder.

Just a thought for an alternative to try.

>

> Hi Guys,

>

> I could really do with some help...

>

> My ds is Adam and was first diagnosed with Sensory Intergration Disorder at

age 4, then the diagnosis of Aspergers followed a few months later. Adam was

also diagnosed with Adhd and dyspraxia last Christmas just before his 6th

Birthday.

>

> He has been on 10mg of Strattera for adhd symptoms which has really improved

his attention span and hyperactivity levels. The problem is and has always been

but it seems to be getting worse is his anxiety which I know can go hand in hand

with As. At times of stress and change Adam's anxiety levels go through the

roof. So his psychiatirist suggested for the 2nd time we try him with some meds

for anxiety. The first time we said no thanks we will manage it ourselves. She

has suggested Fluoxetine(prozac)Syrup, a very small dose only 1.25 mls to start

then increasing to 2.5mls the next week. My husband and I are both in agreement

in that treating the anxiety with meds is the last resort. But the fact is Adam

does not cope to well outside of our home, he just wants to stay home most of

the time and has no desire to even go for walks or to the park anymore. We have

decided to wait another week as there has been a slight improvement in his

anxiety levels at home and at school. Is there any one out there who is

medicating for anxiety and have you seen improvements or not. The psych also

said rispodone (spelling )is a good med for anxiety but it does not mix well

with stratter just ritilan. Any advice would be good as me and my hubby just

want to do the right thing by him. Thank you for taking the time to read this.

>

> Estelle

>

[Guest guest]

Hi,

My son was on prozac for about a year when his Poppy was dying...we are slowly weaning him off. It helped alot. In fact, when my son gets anxious about something or is going to do something new....he will ask for the medicine. He was so nervous at the beginning of school this year...he took it in the mornings for about 2 weeks. I say try it. If it doesn't work, then you try something else. But, my son has learned about his body...he knows when he is anxious and that he needs his medicine to help him.

If you are asking about Resperdol...my son was given that for anger...it didn't help. We now have him on Geodon...and it really helps. We also have him on Adderall.

They seem to be helping him alot...

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: estellelws <estellelws@...>Subject: ( ) need advice please Date: Sunday, October 4, 2009, 5:51 AM

Hi Guys,I could really do with some help...My ds is Adam and was first diagnosed with Sensory Intergration Disorder at age 4, then the diagnosis of Aspergers followed a few months later. Adam was also diagnosed with Adhd and dyspraxia last Christmas just before his 6th Birthday.He has been on 10mg of Strattera for adhd symptoms which has really improved his attention span and hyperactivity levels. The problem is and has always been but it seems to be getting worse is his anxiety which I know can go hand in hand with As. At times of stress and change Adam's anxiety levels go through the roof. So his psychiatirist suggested for the 2nd time we try him with some meds for anxiety. The first time we said no thanks we will manage it ourselves. She has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start then increasing to 2.5mls the next week. My husband and I are both in agreement in that treating the

anxiety with meds is the last resort. But the fact is Adam does not cope to well outside of our home, he just wants to stay home most of the time and has no desire to even go for walks or to the park anymore. We have decided to wait another week as there has been a slight improvement in his anxiety levels at home and at school. Is there any one out there who is medicating for anxiety and have you seen improvements or not. The psych also said rispodone (spelling )is a good med for anxiety but it does not mix well with stratter just ritilan. Any advice would be good as me and my hubby just want to do the right thing by him. Thank you for taking the time to read this.Estelle

[Guest guest]

My son n (9) is on a low dose of Prozac for his anxiety for almost a year now. We had ups and downs before, where we thought he didn't need medication. But last year, it became obvious, he was having so many meltdowns in school, any frustration or change in routine would cause them. We have seen a difference since he's been on it. He still gets upset, but you can talk him through it and he regains control of himself. Whereas before, you couldn't talk to him, he was kicking and crying on the floor.

I would recommend trying it, the psychiatrist also told us that Prozac works well in younger kids, because it helps "rewire" their brain. She said instead of going into panic mode when a problem happens, their brain can go more toward problem solving mode. So it's not something they have to be on forever. If it works for them, they should continue to see the improvement even after they are weaned off.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: estellelws <estellelws@...>Subject: ( ) need advice please Date: Sunday, October 4, 2009, 2:51 AM

Hi Guys,I could really do with some help...My ds is Adam and was first diagnosed with Sensory Intergration Disorder at age 4, then the diagnosis of Aspergers followed a few months later. Adam was also diagnosed with Adhd and dyspraxia last Christmas just before his 6th Birthday.He has been on 10mg of Strattera for adhd symptoms which has really improved his attention span and hyperactivity levels. The problem is and has always been but it seems to be getting worse is his anxiety which I know can go hand in hand with As. At times of stress and change Adam's anxiety levels go through the roof. So his psychiatirist suggested for the 2nd time we try him with some meds for anxiety. The first time we said no thanks we will manage it ourselves. She has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start then increasing to 2.5mls the next week. My husband and I are both in agreement in that treating the

anxiety with meds is the last resort. But the fact is Adam does not cope to well outside of our home, he just wants to stay home most of the time and has no desire to even go for walks or to the park anymore. We have decided to wait another week as there has been a slight improvement in his anxiety levels at home and at school. Is there any one out there who is medicating for anxiety and have you seen improvements or not. The psych also said rispodone (spelling )is a good med for anxiety but it does not mix well with stratter just ritilan. Any advice would be good as me and my hubby just want to do the right thing by him. Thank you for taking the time to read this.Estelle

[Guest guest]

Estelle, my Asperger daughter has benefited greatly from

medication. We are still trialling zoloft. Our doctor just happens

to like this medication.

In retropect I should have done this so much sooner.

I would suggest you trial medication in small doses with very slow

increase. This minimizes greatly adverse reactions. The results

are less dramatic but so are any adverse effects.

We are still increasing zoloft to see how much her emotions

can be better regulated. It takes time to see results.

We saw more calm results in about a month. We are continuing

to increase the medication because she still gets upsets

over unplanned activities or events.

Her poor life is so isolated by her outbursts even though

they don't happen that often an outburst in an 11 year old

is not socially acceptable. She has no friends.

I wish I had started sooner on the medication. We keep trying

every therapy offered us and their are an endless number of them.

I wish I had realized that it is not a permanent trial. If you

don't like the affect on a medication you can stop it.

good luck,

Pam

>

> Hi Guys,

>

> I could really do with some help...

>

> My ds is Adam and was first diagnosed with Sensory Intergration Disorder at

age 4, then the diagnosis of Aspergers followed a few months later. Adam was

also diagnosed with Adhd and dyspraxia last Christmas just before his 6th

Birthday.

>

> He has been on 10mg of Strattera for adhd symptoms which has really improved

his attention span and hyperactivity levels. The problem is and has always been

but it seems to be getting worse is his anxiety which I know can go hand in hand

with As. At times of stress and change Adam's anxiety levels go through the

roof. So his psychiatirist suggested for the 2nd time we try him with some meds

for anxiety. The first time we said no thanks we will manage it ourselves. She

has suggested Fluoxetine(prozac)Syrup, a very small dose only 1.25 mls to start

then increasing to 2.5mls the next week. My husband and I are both in agreement

in that treating the anxiety with meds is the last resort. But the fact is Adam

does not cope to well outside of our home, he just wants to stay home most of

the time and has no desire to even go for walks or to the park anymore. We have

decided to wait another week as there has been a slight improvement in his

anxiety levels at home and at school. Is there any one out there who is

medicating for anxiety and have you seen improvements or not. The psych also

said rispodone (spelling )is a good med for anxiety but it does not mix well

with stratter just ritilan. Any advice would be good as me and my hubby just

want to do the right thing by him. Thank you for taking the time to read this.

>

> Estelle

>

[Guest guest]

my 12 yo aspie daughter also recently (august) began a low dose (1.5 mg) of

prozac and i have seen a similar result. she does still get upset but rarely

escalates and can be talked thru problems, sometimes talks herself thru the

problem. she would have never been able to do this before. as recent as this

last saturday i was reminded how much this med has helped her (and me). on

saturday she became very argumentative, rude and inflexible. caught me off

guard and i was worried that the med had stopped working until i realized we had

forgotten the friday nite dose. the down side to the med is she suffers

intestinal cramping and diarrhea. i started her on probiotics and it helps most

of the time. i had not heard of the rewiring, but based on what i have read

about how the brain works, it makes sense.

regards, melody k.

>

>

> From: estellelws <estellelws@...>

> Subject: ( ) need advice please

>

> Date: Sunday, October 4, 2009, 2:51 AM

>

>

>  

>

>

>

> Hi Guys,

>

> I could really do with some help...

>

> My ds is Adam and was first diagnosed with Sensory Intergration Disorder at

age 4, then the diagnosis of Aspergers followed a few months later. Adam was

also diagnosed with Adhd and dyspraxia last Christmas just before his 6th

Birthday.

>

> He has been on 10mg of Strattera for adhd symptoms which has really improved

his attention span and hyperactivity levels. The problem is and has always been

but it seems to be getting worse is his anxiety which I know can go hand in hand

with As. At times of stress and change Adam's anxiety levels go through the

roof. So his psychiatirist suggested for the 2nd time we try him with some meds

for anxiety. The first time we said no thanks we will manage it ourselves. She

has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start

then increasing to 2.5mls the next week. My husband and I are both in agreement

in that treating the anxiety with meds is the last resort. But the fact is Adam

does not cope to well outside of our home, he just wants to stay home most of

the time and has no desire to even go for walks or to the park anymore. We have

decided to wait another week as there has been a slight improvement in his

anxiety levels at

> home and at school. Is there any one out there who is medicating for anxiety

and have you seen improvements or not. The psych also said rispodone (spelling

)is a good med for anxiety but it does not mix well with stratter just ritilan.

Any advice would be good as me and my hubby just want to do the right thing by

him. Thank you for taking the time to read this.

>

> Estelle

>

[Guest guest]

my daughter started with prozac at 12. She was taking it for at least 2 and a half years, daily. At the time she started she was far from home at a residential program and I did not see the change right away. The effects I could notice was basically less opposition and less tendency to fall into depression. She came back home one more year later and kept taking prozac. She was homeschooled for 1 yr. and the next she went to small priv.school. She was still having obsessive conduct and other issues typical of AS. There was a moment she just did not want to take prozac anymore. Her performance in school went up but her stress tolerance level suffered. She mentioned that prozac made her feel like a robot and miserable, she also mentioned suicidal thoughts. These are things that I have been getting slowly from her. She still refuses any med,and since she is 18, now it is difficult to control it. Sometimes I wish she would accept something to deal with the conditions associated with AS, but then she says that it would be terrible to suffer that again, which I do not quite understand. She is a softmore in College and made the Dean's list with distinction but the crisis are still there. I do not know if it would be better with prozac but I am afraid of side effects. My only recommendation would be to watch your children closely, AS tend not to verbalize what they feel.

Ana

( ) need advice please

>

> Date: Sunday, October 4, 2009, 2:51 AM

>

>

>

>

>

>

> Hi Guys,

>

> I could really do with some help...

>

> My ds is Adam and was first diagnosed with Sensory Intergration Disorder at age 4, then the diagnosis of Aspergers followed a few months later. Adam was also diagnosed with Adhd and dyspraxia last Christmas just before his 6th Birthday.

>

> He has been on 10mg of Strattera for adhd symptoms which has really improved his attention span and hyperactivity levels. The problem is and has always been but it seems to be getting worse is his anxiety which I know can go hand in hand with As. At times of stress and change Adam's anxiety levels go through the roof. So his psychiatirist suggested for the 2nd time we try him with some meds for anxiety. The first time we said no thanks we will manage it ourselves. She has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start then increasing to 2.5mls the next week. My husband and I are both in agreement in that treating the anxiety with meds is the last resort. But the fact is Adam does not cope to well outside of our home, he just wants to stay home most of the time and has no desire to even go for walks or to the park anymore. We have decided to wait another week as there has been a slight improvement in his anxiety levels at

> home and at school. Is there any one out there who is medicating for anxiety and have you seen improvements or not. The psych also said rispodone (spelling )is a good med for anxiety but it does not mix well with stratter just ritilan. Any advice would be good as me and my hubby just want to do the right thing by him. Thank you for taking the time to read this.

>

> Estelle

>

[Guest guest]

thanx for the information about your daughter. it must be difficult, the

crisis, for both you and her. my daughter too has anxiety. her diag has gone

from ocd to general anxiety-dr says because she doesn't have ocd rituals. her

big concern is germs and parasites. she loved animal planet and discovery

channel and watched nothing but them for years, unfortunately they have

" extreme " shows which she has taken to heart.

regards, melody

>

> >

>

> >

>

> > From: estellelws <estellelws@>

>

> > Subject: ( ) need advice please

>

> >

>

> > Date: Sunday, October 4, 2009, 2:51 AM

>

> >

>

> >

>

> > ?

>

> >

>

> >

>

> >

>

> > Hi Guys,

>

> >

>

> > I could really do with some help...

>

> >

>

> > My ds is Adam and was first diagnosed with Sensory Intergration Disorder at

age 4, then the diagnosis of Aspergers followed a few months later. Adam was

also diagnosed with Adhd and dyspraxia last Christmas just before his 6th

Birthday.

>

> >

>

> > He has been on 10mg of Strattera for adhd symptoms which has really improved

his attention span and hyperactivity levels. The problem is and has always been

but it seems to be getting worse is his anxiety which I know can go hand in hand

with As. At times of stress and change Adam's anxiety levels go through the

roof. So his psychiatirist suggested for the 2nd time we try him with some meds

for anxiety. The first time we said no thanks we will manage it ourselves. She

has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start

then increasing to 2.5mls the next week. My husband and I are both in agreement

in that treating the anxiety with meds is the last resort. But the fact is Adam

does not cope to well outside of our home, he just wants to stay home most of

the time and has no desire to even go for walks or to the park anymore. We have

decided to wait another week as there has been a slight improvement in his

anxiety levels at

>

> > home and at school. Is there any one out there who is medicating for

anxiety and have you seen improvements or not. The psych also said rispodone

(spelling )is a good med for anxiety but it does not mix well with stratter just

ritilan. Any advice would be good as me and my hubby just want to do the right

thing by him. Thank you for taking the time to read this.

>

> >

>

> > Estelle

>

> >

>

[Guest guest]

I know there are side effects possible, so you really do have to watch them, and stop if there are more negatives than positives. I hope your daughter can find something else to help her. Can you talk to the doctor, and get some suggestions? Would your daughter be willing to try something else?

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: ACuitino@... <ACuitino@...>Subject: Re: ( ) Re: need advice please Date: Monday, October 5, 2009, 11:10 PM

my daughter started with prozac at 12. She was taking it for at least 2 and a half years, daily. At the time she started she was far from home at a residential program and I did not see the change right away. The effects I could notice was basically less opposition and less tendency to fall into depression. She came back home one more year later and kept taking prozac. She was homeschooled for 1 yr. and the next she went to small priv.school. She was still having obsessive conduct and other issues typical of AS. There was a moment she just did not want to take prozac anymore. Her performance in school went up but her stress tolerance level suffered. She mentioned that prozac made her feel like a robot and miserable, she also mentioned suicidal thoughts. These are things that I have been getting slowly from her. She still refuses any med,and since she is 18, now it is difficult to control it. Sometimes

I wish she would accept something to deal with the conditions associated with AS, but then she says that it would be terrible to suffer that again, which I do not quite understand. She is a softmore in College and made the Dean's list with distinction but the crisis are still there. I do not know if it would be better with prozac but I am afraid of side effects. My only recommendation would be to watch your children closely, AS tend not to verbalize what they feel.Ana

( ) need advice please> > Date: Sunday, October 4, 2009, 2:51 AM> > > > > > > Hi Guys,> > I could really do with some help...> > My ds is Adam and was first diagnosed with Sensory Intergration Disorder at age 4, then the diagnosis of Aspergers

followed a few months later. Adam was also diagnosed with Adhd and dyspraxia last Christmas just before his 6th Birthday.> > He has been on 10mg of Strattera for adhd symptoms which has really improved his attention span and hyperactivity levels. The problem is and has always been but it seems to be getting worse is his anxiety which I know can go hand in hand with As. At times of stress and change Adam's anxiety levels go through the roof. So his psychiatirist suggested for the 2nd time we try him with some meds for anxiety. The first time we said no thanks we will manage it ourselves. She has suggested Fluoxetine(prozac) Syrup, a very small dose only 1.25 mls to start then increasing to 2.5mls the next week. My husband and I are both in agreement in that treating the anxiety with meds is the last resort. But the fact is Adam does not cope to well outside of our home, he just wants to stay home most of the time and has no desire to even

go for walks or to the park anymore. We have decided to wait another week as there has been a slight improvement in his anxiety levels at> home and at school. Is there any one out there who is medicating for anxiety and have you seen improvements or not. The psych also said rispodone (spelling )is a good med for anxiety but it does not mix well with stratter just ritilan. Any advice would be good as me and my hubby just want to do the right thing by him. Thank you for taking the time to read this.> > Estelle>

[Guest guest]

On Jun 2, 6:42pm, " estellelws " wrote:

} He has been on 10mg of Strattera for adhd symptoms which has really improv=

} ed his attention span and hyperactivity levels. The problem is and has alwa=

} ys been but it seems to be getting worse is his anxiety which I know can go=

} hand in hand with As. At times of stress and change Adam's anxiety levels =

Hi - sorry I'm responding to this so late, but I wanted to mention

that when our son was tried on Ritalin, the first few days were great but

then his anxiety level went through the roof. Apparently that is fairly

common with adhd medications. His psychiatrist then switched him to

a less well known medication called Tenex and that has been a lifesaver.

It has helped a lot with his impulse control issues and he seems far

less anxious, too. He's been on it over a year and we're still bery

happy with the results.

Willa

[Guest guest]

Pamela,

If someone is telling you that they will leave you with an " old lady walk "

following revision you might want to seek another, or several opinions. I have

never heard that mentioned and have had the pleasure of meeting many post-op

flatback patients at our gatherings in Boston, and our two retreats. The only

people that walked like an old lady were those that had not had surgery yet, or

those that had failed revision...which is a possibility....just ask Kathy in CA.

There may be some research suggesting you be told that your stride may be a bit

shorter...although my recollection without going back and looking at the

research is that it is not really all that measurable.

That said, there are differences in the way one moves with such a long fusion,

as well as the permanant lordosis. As DrRand explained it...sitting is a little

unusual with this much lordosis....(although one gets used to it) but they must

make a little bit of a compromise. So they basically chose a posture that is

most effective for walking, but will permit sitting. Make sense?

When I first was doing all the long walks following revision I felt very stiff

and unnatural...and probably everything was very shortend from all the laying

around/lack of physical activity prior to revision. Over time that changed, and

I would say that my walk is comparable to any of my unfused friends. The only

differences are that I really dont like to walk fast...I feel too " torqued " or

something. And I much prefer walking on soft surfaces to asphalt or pavement.

Take Care, Cam

[Guest guest]

Why would revision surgery cause instant menopause?  I have never heard of this before?

On Fri, Jan 28, 2011 at 3:46 PM, Pamela Hanley <campbetty@...> wrote:

 

Cam,

Thank you for that reality check....so scared I am going to trade in less pain for all sorts of unpleasantries...like even more scars, COMPLETE lack of any torso movement, instant menapause ( I am 50 and still regular with periods) and a full year of recovery when I am just starting a new love relationship.

Pamela

[Guest guest]

Hi ,

Welcome to the group. You have found a number of us who have lived through what

you are going through right now. As when we were young, it is very difficult to

go through this with out anyone else around you that has experienced the same

thing....hence this group.

Where do you live? Those of us that so choose have managed to pull together

little meet-ups with folks they have met here...and we have even had two

retreats that were a great way for making connections...and see the results of

revision first hand.

As said, the main thing right now to realize is that as painful this is,

and as tired as you are....you need to accept that this probably is not an

emergency....which means that you have the luxury of time to develop a plan that

will work for you. Take a deep breath.

Most of us found that while in the " searching & learning " stage that it was

helpful to have a good pain management team keeping us comfortable. Same thing

in the early days post revision....so although I completely understand your wish

to NOT have to go to the pain doctor forever, you may want to consider if there

is a way you can make friends with the idea that you will want him on your team

for awhile. And if not this particular doctor...then one who is willing to work

with you as you go forward.

You are right to assume that if you are feeling badly now, then things are

probably not going to improve by themselves....so making a long and short term

plan is essential.

For right now, what can you do? Other than pain management....members have all

found various levels of success with any number of modalities couples with

things like weight management, cranial sacral therapy, pacing or managing their

lifestyle etc.. Point being...you probably can be more comfortable...but it may

not last forever.

Start by reading from our group main page in the files and links section. I

would also take a look in the photo section to see some before and after shots.

Know that revision surgery may not get you to a pain free existence...but in the

right hands, you have a chance of at least reducing the fatigue of fighting

gravity and grinding on impinged nerves.

We are here to support you and answer any questions you may have!

Take Care, Cam

>

> Hi my name is and I'm new here, was hoping I could ask some questions

or get some advice on what to do and the best direction to take. I had

scholiosis surgery in 1981 when I was 13, I have never had any problems up until

I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on

most days it is hard for me to walk for very long or sit or stand. After several

tests they told me I had degenative disc issues that comes from the Harrington

rod that could not have been forseen in the 80's. My doctor sent me to a pain

management doctor who only wants to give me pills and a shot once in a while. I

do not want to be on pain pills for a number of reasons and the SI injections

aren't working real well, I have expressed this with my pain management doc. He

told me to come back when it gets real bad, the pain is real bad now but I don't

want to go back to him. I would like for whatever is wrong to be fixed. Is this

unheard of or something cause I've read several people in the same shape. What

could I be doing to make my sitution better? I use to be active, now I'm always

telling people " I can't cause my back hurts " it is very depressing to me. I have

also done physical therepy. I don't know what to do I'm just tired of being

tired. Thank you in advance for any information, its nice to know I'm not

alone...thanks for listening

>

[Guest guest]

Hi ,

Thank you so much for your email, it encourges me to keep on top of this and not to give up. It is great to hear how good you are doing and that there is an end to this madness.

I live in Marietta, Georgia, I had my surgery at ish Rite but it is now Egleston hosp. I have requested my records but that is taking a while to get, I should have went down there but I hate going to Atlanta.

I don't know who the doctor was that did the surgery or what levels have been fused, both of my parents are deceased so there is no one to ask until I get my records. All I know is that the rod starts at the top of my shoulder blades and goes all the way down and is about 2 inches above my tailbone. I know it sounds silly that I don't know the levels, all they have really said to me is that I have a long rod in my back but I have assumed that everybody has the same size rod. I have never reseached this before until now and that is only because I don't like how slow the doctors are moving, and they keep pushing their pain pills on me that is not going to fix my problem. I do have recent x-rays on disc that I'm able to take to another doc if necessary, I don't know the exact procedure name but it is where they shoot dye into 3 different holes at the base of your spine for

x-rays( I don't want to do this procedure again very painful). Doctor said he could not give me a MRI because of the rod so we had to do it this way. And still after all the tests and procedures I feel worse not any better.

But, thank you for the web site I will do some research for a doctor that specializes in what I need, I have been going to a group of doctors at Resurgeons but I am not happy with them.

But, most of all I'm glad there are people out there that know and understand what we are going thru, thanks for the knowledge and advice, and grateful for the internet!!

, I am in your exact position. Pain management does not work and you want it fixed. I'm deciding whether to go all out with the complete marathon surgery of 11 hours and a year recovery or do it in stages....I will probably do it in stages...and do it with a local doctor who does not have a ton of flatback surgeries under his belt but is very familar with it all. Pamela

From: sabrinastrickland@...Date: Fri, 28 Jan 2011 05:47:25 +0000Subject: [ ] need advice please

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or

something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

I thought the trama, because I'm so close to menopause, would do it. As you can probably tell I suffer from perimenopause and am up and down with my fears about this...my body needs this resolved and my mind is just scared. I've had my rod in 33 years and my lower back cries to me everyday.

Pamela

From: melissacurran530@...Date: Fri, 28 Jan 2011 15:48:52 -0500Subject: Re: [ ] Re: need advice please

Why would revision surgery cause instant menopause? I have never heard of this before?

On Fri, Jan 28, 2011 at 3:46 PM, Pamela Hanley <campbetty@...> wrote:

Cam,Thank you for that reality check....so scared I am going to trade in less pain for all sorts of unpleasantries...like even more scars, COMPLETE lack of any torso movement, instant menapause ( I am 50 and still regular with periods) and a full year of recovery when I am just starting a new love relationship.

Pamela

[Guest guest]

Your stance is different because the position of the spine is changed. I don't walk like an old lady now. I was tiled forward prior to revision. Sent from my iPhoneOn Jan 28, 2011, at 2:22 PM, Pamela Hanley <campbetty@...> wrote:

Can someone who has had revision confirm or deny that it changes the way you walk? Like an old lady I think was said?Pamela

From: melmalone@...Date: Fri, 28 Jan 2011 12:16:36 -0800Subject: Re: [ ] need advice please

,

Your situation sounds familiar to mine. Same ages and everything. I eventually chose revision and had mine done in Amarillo, Tx with Dr. LaGrone. I will be 4 years post in July. Of course, revision is a big decision and I recommend you get more than one opinion. Let me know if you have any questions.

Melinda Malone

From: sabrinastrickland <sabrinastrickland@...>Subject: [ ] need advice please Date: Thursday, January 27, 2011, 11:47 PM

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or

something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

I'm almost positive that it's the trauma of surgery, illness, and/or anesthesia,

and is very common.

>

> >

> >

> > Cam,

> > Thank you for that reality check....so scared I am going to trade in less

> > pain for all sorts of unpleasantries...like even more scars, COMPLETE lack

> > of any torso movement, instant menapause ( I am 50 and still regular with

> > periods) and a full year of recovery when I am just starting a new love

> > relationship.

> >

> >

> > Pamela

> >

>

[Guest guest]

Hello ,

I'm 2 years post-op and I was in a very similar situation to you. I walked like an old lady BEFORE surgery because the disc has worn away so much that my spine had started to slip forward. The term you'll hear a lot hear is "Flat Back". I have photos posted in the files. Before and after.I was peri-menapausal going into surgery and I'm still at the same place. As a matter of fact, some of the symptoms actually lessened after surgery for about a year. I'm turning 47 tomorrow. You'll find lots of Docs eager to do surgery for people like us... it's like a challenge to them. But very few really have the experience or understand the complications. Try to find someone with multiple successful "Herrington rod Revision" surgeries under their belt. It's a bit of an Orthopedic sub-specialty. There are not a lot of truly gifted Docs out

there.You'll notice some of the Gals here went through some bad Docs and surgeries until they found someone who knew what he/she was doing. Surgery is a last resort obviously. Consider it once the frustration of a limited lifestyle and the pain is too much for you. The recovery is awful and very long. But the results for me, outweighed the costs. We each have our own thresholds...Best wishes,-Dyann