Newly diagnosed

June 18, 2008

Hi Kim,

It's important to go to an experienced surgeon and Dr. Luketich

in Pittsburgh is very experienced! So your husband is doing

exactly the right thing. He will probably stay one night in the

hospital and feel sore for a couple of weeks, but it improves

quite a lot from day to day. How long does he have off work

after the surgery?

It's good to stick to a soft mushy diet for a few weeks or a

month to let the esophagus heal:

http://en.wikipedia.org/wiki/Soft_diet

If he's getting dehydrated, it's important to let Dr. Luketich

know and he may want your husband to be on an IV before the

surgery.

in PA

newly diagnosed

> hi,

> my husband was diagnosed in april and scheduled for a myotomy

> with dr

> lukatich on mon.,6-23.i am trying to learn all i can about this

> condition because i don`t think my husband is realizing the

> long road

> ahead.he is way past even an attempt at dilation and has lost

> about 35

> lbs. in the last few months.some days he can`t even swallow

> water. any

> help or words of encouragement for us would be appreciated.

> thanks,

> kim

>

June 18, 2008

Kim, we are kinda in the same boat...my daughter 8 has been suffering since Oct 2007. I know the achalasia is progressive (gets worse) and is day to day. but when has food stuck, even salvia is a problem, since your husband is new at this...just wondering have you guys tried "sticking fingers down his throat" to dislodge any possibe food not going down??? it is gross, but may give relief on the "days he can't swollow water". It was suprising to me that my daughter actually had food from 1-2 days still in her esophagus, which made her unable to eat until the food went up or down. note: for food stuck, look at the clock, if you are throwing up salivia about 20 minutes apart, we have found a food obstruction to be the culprit. food crunchy food that turns to "sand" when chewed is tollerated like cherrios cereal we blend soups minestrone tastes the

same blended ( like at Carrabaas restuarant) and has lots of good veggies for you avoid bread, toast, bagels, and pizza some avoid salads, raw veggies and beef/pork everyone is different on bad days we have had sucess with vanilla frozen yogurt and organic food items and home made items ( made from scratch). cola syrup found at walgreens for spasms/discomfort taken right away. use chewable medicines in the childrens aisle chewable multivitimins to stay healthy ensure with banana extract about 1-3 teaspoons per can ensure with chocolate syrup adds calories and taste! hope this helps after surgery take it easy , with lifting getting back to work and progress slowly back to eating normally, report any problems right away to your doctor... I have heard time and

time again about mishapps...be patient and let your body recover!!! and good luck we are going in for heller Mytomy soon ( within 2 months) ...keep in touch -Danakimcesa <kimcesa@...> wrote: hi,my husband was diagnosed in april and scheduled for a myotomy with dr lukatich on mon.,6-23.i am trying to learn all i can about this condition because i don`t think my husband is realizing the long road ahead.he is way past even an attempt at dilation and

has lost about 35 lbs. in the last few months.some days he can`t even swallow water. any help or words of encouragement for us would be appreciated.thanks,kim

June 18, 2008

Dear Kim,

I certainly AM speaking from experience. I am SO grateful that I had this surgery done. It is now 2 years ago and I have got better and better over this time. The recovery time depends partly on the patient's age. I was 55 and in fairly good health. By 3 weeks I was ready for a special day out to an outdoor concert that I had longed to go to and by 2 months I was enjoying my first ever anniversary meal with my Husband.

A ball park figure would be that you would need 2-3 weeks off work, more if it's a lifting job. The first 4-5 weeks it is advisable to stick to mushy food as there is a lot of healing to go on inside.

Ask away with your questions. I will keep a look out for your name cropping up. And others will help you out too, I am sure.

Love from Ann x

> > From: kimcesa

<kimcesa@... >> Subject: newly diagnosed> achalasia@grou ps.com> Date: Wednesday, 18 June, 2008, 8:58 AM> > > > > > > hi,> my husband was diagnosed in april and scheduled for a myotomy with dr > lukatich on mon.,6-23.i am trying to learn all i can about this > condition because i don`t think my husband is realizing the long road > ahead.he is way past even an attempt at dilation and has lost about 35 > lbs. in the last few months.some days he can`t even swallow water. any > help or words of encouragement for us would be appreciated.> thanks,> kim> > > > > > > > > > > > > > > > > ____________

_________ _________ _________ _________ _________ _> Sent from .> A Smarter Email http://uk.docs. / nowyoucan. html>

Sent from .

A Smarter Email.

June 18, 2008

Hi KimI had my myotomy back in January and so far its going well, can do and eat what i want when i want. Just make sure he takes it easy and doesnt rush with his food - easier said than done and i say that from experience - its just so nice when things go down you cant help yourself. If he has been used to soft food then just carry on for a while and slowly introduce things bit by bit day by day. I got the same and also couldn't even get water to stay down and so i lived on chocolate, mashed potato and cola - not altogether though lol.

AndyYorkshire, England.2008/6/18 kimcesa <kimcesa@...>:

hi,

my husband was diagnosed in april and scheduled for a myotomy with dr

lukatich on mon.,6-23.i am trying to learn all i can about this

condition because i don`t think my husband is realizing the long road

ahead.he is way past even an attempt at dilation and has lost about 35

lbs. in the last few months.some days he can`t even swallow water. any

help or words of encouragement for us would be appreciated.

thanks,

kim

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

July 26, 2008

Lorrie ~~

I was dx in April 2002 during a routine physical myself. I was in shock just like you are. I didn't tell my family for 5 years. I had a liver biopsy in 2002 and it showed no liver damage so I decided to wait until the next recommended biopsy which would be 5 years to see how things were progressing. In 2007 when I had the biopsy again it had progressed to mild damage so I decided to check in treatment (tx). After careful care and consideration, I decided to do tx and started a six month tx in January 2008 and finished in June. I am fortunate that I become undectable which is where they cannot find active virus in your body. I have continued to be so so far but the true test will come in December at the 6 months mile marker.

Try not to worry too much (I know this will be hard to do) but until you have an ultrasound (sometimes done but not always) and a liver biopsy (recommended). You won't really know what you are dealing with as far as liver damage goes. At that point you can consider your options about tx. Getting the biopsy usually takes a while to get.

This group is a great support to folks and there's a wealth of information that is reliable here. All of which I checked out with my hepatologist (liver specialist) and it was all accurate. Feel free to ask any questions or voice any concerns at any time. We will try to be of help.

Take Care,

From: lorriedeeter <lorriedeeter@...>Subject: Newly diagnosedHepatitis CSupportGroupForDummies Date: Saturday, July 26, 2008, 10:25 AM

Hi, I was just recently diagnosed with Hepatitis C. I have my first appointment with an infectious disease specialist on Monday. At this time I have no idea of what lies ahead. All my regular Dr. could tell me was that I was positive for Hep C and that my viral load was 70,000.This all was a complete shock to me as I had no symptoms and the results came up during a routine physical. At first I felt like my whole world had been turned upside down. My Dr. told me not to worry, but how can you not worry when you have no idea of what lies ahead. Do they usually have to do additional testing before they can determine treatment?Now that I have had a couple of weeks to do some research, I feel like I have a few answers but that there are still a lot of unknowns. I am trying to learn more not only for myself but also to reassure my family, friends and boyfriend.When I first told my family

they acted like it was a death sentence. My Dad is having the hardest time and just doesn't want to believe that I am sick. Any advice would be greatly appreciated.Lorrie

July 26, 2008

Lorrie ~~

I was dx in April 2002 during a routine physical myself. I was in shock just like you are. I didn't tell my family for 5 years. I had a liver biopsy in 2002 and it showed no liver damage so I decided to wait until the next recommended biopsy which would be 5 years to see how things were progressing. In 2007 when I had the biopsy again it had progressed to mild damage so I decided to check in treatment (tx). After careful care and consideration, I decided to do tx and started a six month tx in January 2008 and finished in June. I am fortunate that I become undectable which is where they cannot find active virus in your body. I have continued to be so so far but the true test will come in December at the 6 months mile marker.

Try not to worry too much (I know this will be hard to do) but until you have an ultrasound (sometimes done but not always) and a liver biopsy (recommended). You won't really know what you are dealing with as far as liver damage goes. At that point you can consider your options about tx. Getting the biopsy usually takes a while to get.

This group is a great support to folks and there's a wealth of information that is reliable here. All of which I checked out with my hepatologist (liver specialist) and it was all accurate. Feel free to ask any questions or voice any concerns at any time. We will try to be of help.

Take Care,

From: lorriedeeter <lorriedeeter@...>Subject: Newly diagnosedHepatitis CSupportGroupForDummies Date: Saturday, July 26, 2008, 10:25 AM

Hi, I was just recently diagnosed with Hepatitis C. I have my first appointment with an infectious disease specialist on Monday. At this time I have no idea of what lies ahead. All my regular Dr. could tell me was that I was positive for Hep C and that my viral load was 70,000.This all was a complete shock to me as I had no symptoms and the results came up during a routine physical. At first I felt like my whole world had been turned upside down. My Dr. told me not to worry, but how can you not worry when you have no idea of what lies ahead. Do they usually have to do additional testing before they can determine treatment?Now that I have had a couple of weeks to do some research, I feel like I have a few answers but that there are still a lot of unknowns. I am trying to learn more not only for myself but also to reassure my family, friends and boyfriend.When I first told my family

they acted like it was a death sentence. My Dad is having the hardest time and just doesn't want to believe that I am sick. Any advice would be greatly appreciated.Lorrie

July 26, 2008

Lorrie ~~

I was dx in April 2002 during a routine physical myself. I was in shock just like you are. I didn't tell my family for 5 years. I had a liver biopsy in 2002 and it showed no liver damage so I decided to wait until the next recommended biopsy which would be 5 years to see how things were progressing. In 2007 when I had the biopsy again it had progressed to mild damage so I decided to check in treatment (tx). After careful care and consideration, I decided to do tx and started a six month tx in January 2008 and finished in June. I am fortunate that I become undectable which is where they cannot find active virus in your body. I have continued to be so so far but the true test will come in December at the 6 months mile marker.

Try not to worry too much (I know this will be hard to do) but until you have an ultrasound (sometimes done but not always) and a liver biopsy (recommended). You won't really know what you are dealing with as far as liver damage goes. At that point you can consider your options about tx. Getting the biopsy usually takes a while to get.

This group is a great support to folks and there's a wealth of information that is reliable here. All of which I checked out with my hepatologist (liver specialist) and it was all accurate. Feel free to ask any questions or voice any concerns at any time. We will try to be of help.

Take Care,

From: lorriedeeter <lorriedeeter@...>Subject: Newly diagnosedHepatitis CSupportGroupForDummies Date: Saturday, July 26, 2008, 10:25 AM

Hi, I was just recently diagnosed with Hepatitis C. I have my first appointment with an infectious disease specialist on Monday. At this time I have no idea of what lies ahead. All my regular Dr. could tell me was that I was positive for Hep C and that my viral load was 70,000.This all was a complete shock to me as I had no symptoms and the results came up during a routine physical. At first I felt like my whole world had been turned upside down. My Dr. told me not to worry, but how can you not worry when you have no idea of what lies ahead. Do they usually have to do additional testing before they can determine treatment?Now that I have had a couple of weeks to do some research, I feel like I have a few answers but that there are still a lot of unknowns. I am trying to learn more not only for myself but also to reassure my family, friends and boyfriend.When I first told my family

they acted like it was a death sentence. My Dad is having the hardest time and just doesn't want to believe that I am sick. Any advice would be greatly appreciated.Lorrie

July 26, 2008

Hi Lorrie,

I'm SuZie, 58, swf dx'd (diagnosed) HCV+ in 1990 but probably infected in 1969, tx'd(treated) twice(non-responder), now in ESLD(end stage liver disease) awaiting transplant & long term Dummie.

I've just posted a bunch of stuff for the newly diagnosed about the dragon & there's more in the files at the Group site. I hope this answers some of your questions. Keep asking them, knowledge is one of the best weapons we have against the dragon & we're always happy to answer ANY questions anyone may have.

Most of us have no symptoms when we're dx'd, I had none that I knew of 28 years ago when I found out- those who do are the sickest of us. Be happy it was caught now, it gives you more options for tx.

It sounds like your doc was smart enough to realize he/she knew nothing about this disease & admit it. A specialist is the best option for you & yes, there will be a lot of other tests - blood work, an ultrasound & probably a biopsy. The ultrasound & biopsy (biopsy especially) will tell the docs how much damage (if any) has been done to your liver, what stage & grade your condition is & what chance tx has of working for you - the more damage, the more likely it won't work well. The blood tests will show how your liver is working right now & what genotype of HCV you have - different genotypes take different lengths of tx & have better/worse chances of clearing the virus but don't worry about that now. Concentrate on learning what you can about HCV so you'll have lots of good questions for the specialist. Make sure you ask him/her

about his experience with HCV patients - how many does he have, does he deal with HCv a lot, what experience does he have with this disease etc.

Good Luck Girl, we're here whenever you need us,

SuZie & Sir SpYkke the Fuzzy, Master of all he Surveys (including me)

Save the Earth - it's the only planet with CHOCOLATE!

--- On Sat, 7/26/08, lorriedeeter <lorriedeeter@...> wrote

Hi, I was just recently diagnosed with Hepatitis C. I have my first appointment with an infectious disease specialist on Monday. At this time I have no idea of what lies ahead. All my regular Dr. could tell me was that I was positive for Hep C and that my viral load was 70,000.This all was a complete shock to me as I had no symptoms and the results came up during a routine physical. At first I felt like my whole world had been turned upside down. My Dr. told me not to worry, but how can you not worry when you have no idea of what lies ahead. Do they usually have to do additional testing before they can determine treatment?Now that I have had a couple of weeks to do some research, I feel like I have a few answers but that there are still a lot of unknowns. I am trying to learn more not only for myself but also to reassure my family, friends and boyfriend.When I first told my family

they acted like it was a death sentence. My Dad is having the hardest time and just doesn't want to believe that I am sick. Any advice would be greatly appreciated.Lorrie

July 26, 2008

Hi Lorrie,

I'm SuZie, 58, swf dx'd (diagnosed) HCV+ in 1990 but probably infected in 1969, tx'd(treated) twice(non-responder), now in ESLD(end stage liver disease) awaiting transplant & long term Dummie.

I've just posted a bunch of stuff for the newly diagnosed about the dragon & there's more in the files at the Group site. I hope this answers some of your questions. Keep asking them, knowledge is one of the best weapons we have against the dragon & we're always happy to answer ANY questions anyone may have.

Most of us have no symptoms when we're dx'd, I had none that I knew of 28 years ago when I found out- those who do are the sickest of us. Be happy it was caught now, it gives you more options for tx.

It sounds like your doc was smart enough to realize he/she knew nothing about this disease & admit it. A specialist is the best option for you & yes, there will be a lot of other tests - blood work, an ultrasound & probably a biopsy. The ultrasound & biopsy (biopsy especially) will tell the docs how much damage (if any) has been done to your liver, what stage & grade your condition is & what chance tx has of working for you - the more damage, the more likely it won't work well. The blood tests will show how your liver is working right now & what genotype of HCV you have - different genotypes take different lengths of tx & have better/worse chances of clearing the virus but don't worry about that now. Concentrate on learning what you can about HCV so you'll have lots of good questions for the specialist. Make sure you ask him/her

about his experience with HCV patients - how many does he have, does he deal with HCv a lot, what experience does he have with this disease etc.

Good Luck Girl, we're here whenever you need us,

SuZie & Sir SpYkke the Fuzzy, Master of all he Surveys (including me)

Save the Earth - it's the only planet with CHOCOLATE!

--- On Sat, 7/26/08, lorriedeeter <lorriedeeter@...> wrote

Hi, I was just recently diagnosed with Hepatitis C. I have my first appointment with an infectious disease specialist on Monday. At this time I have no idea of what lies ahead. All my regular Dr. could tell me was that I was positive for Hep C and that my viral load was 70,000.This all was a complete shock to me as I had no symptoms and the results came up during a routine physical. At first I felt like my whole world had been turned upside down. My Dr. told me not to worry, but how can you not worry when you have no idea of what lies ahead. Do they usually have to do additional testing before they can determine treatment?Now that I have had a couple of weeks to do some research, I feel like I have a few answers but that there are still a lot of unknowns. I am trying to learn more not only for myself but also to reassure my family, friends and boyfriend.When I first told my family

they acted like it was a death sentence. My Dad is having the hardest time and just doesn't want to believe that I am sick. Any advice would be greatly appreciated.Lorrie

July 26, 2008

Hi Lorrie,

I'm SuZie, 58, swf dx'd (diagnosed) HCV+ in 1990 but probably infected in 1969, tx'd(treated) twice(non-responder), now in ESLD(end stage liver disease) awaiting transplant & long term Dummie.

I've just posted a bunch of stuff for the newly diagnosed about the dragon & there's more in the files at the Group site. I hope this answers some of your questions. Keep asking them, knowledge is one of the best weapons we have against the dragon & we're always happy to answer ANY questions anyone may have.

Most of us have no symptoms when we're dx'd, I had none that I knew of 28 years ago when I found out- those who do are the sickest of us. Be happy it was caught now, it gives you more options for tx.

It sounds like your doc was smart enough to realize he/she knew nothing about this disease & admit it. A specialist is the best option for you & yes, there will be a lot of other tests - blood work, an ultrasound & probably a biopsy. The ultrasound & biopsy (biopsy especially) will tell the docs how much damage (if any) has been done to your liver, what stage & grade your condition is & what chance tx has of working for you - the more damage, the more likely it won't work well. The blood tests will show how your liver is working right now & what genotype of HCV you have - different genotypes take different lengths of tx & have better/worse chances of clearing the virus but don't worry about that now. Concentrate on learning what you can about HCV so you'll have lots of good questions for the specialist. Make sure you ask him/her

about his experience with HCV patients - how many does he have, does he deal with HCv a lot, what experience does he have with this disease etc.

Good Luck Girl, we're here whenever you need us,

SuZie & Sir SpYkke the Fuzzy, Master of all he Surveys (including me)

Save the Earth - it's the only planet with CHOCOLATE!

--- On Sat, 7/26/08, lorriedeeter <lorriedeeter@...> wrote

Hi, I was just recently diagnosed with Hepatitis C. I have my first appointment with an infectious disease specialist on Monday. At this time I have no idea of what lies ahead. All my regular Dr. could tell me was that I was positive for Hep C and that my viral load was 70,000.This all was a complete shock to me as I had no symptoms and the results came up during a routine physical. At first I felt like my whole world had been turned upside down. My Dr. told me not to worry, but how can you not worry when you have no idea of what lies ahead. Do they usually have to do additional testing before they can determine treatment?Now that I have had a couple of weeks to do some research, I feel like I have a few answers but that there are still a lot of unknowns. I am trying to learn more not only for myself but also to reassure my family, friends and boyfriend.When I first told my family

they acted like it was a death sentence. My Dad is having the hardest time and just doesn't want to believe that I am sick. Any advice would be greatly appreciated.Lorrie

July 26, 2008

Thank you all for your support and helpful information. The

information and websites will help me to be more prepared for my

upcoming Dr. visit. It helps greatly to have an idea of what to

expect as far as additional testing and treatment instead of letting

my mind run in a million different directions.

The information will also help to ease the worry that my parents are

having at this time.

Thanks again,

Lorrie

July 26, 2008

Thank you all for your support and helpful information. The

information and websites will help me to be more prepared for my

upcoming Dr. visit. It helps greatly to have an idea of what to

expect as far as additional testing and treatment instead of letting

my mind run in a million different directions.

The information will also help to ease the worry that my parents are

having at this time.

Thanks again,

Lorrie

July 26, 2008

Thank you all for your support and helpful information. The

information and websites will help me to be more prepared for my

upcoming Dr. visit. It helps greatly to have an idea of what to

expect as far as additional testing and treatment instead of letting

my mind run in a million different directions.

The information will also help to ease the worry that my parents are

having at this time.

Thanks again,

Lorrie

June 19, 2009

>

> Does anyone have a child who is recently diagnosed in the London area?

>

hi laura,

i have 4 friends who come to my battersea treating autism support group whose

children were recently diagnosed, all their children are about aged 6. if you

want to meet them my next support group date is 10th july

in battersea, my son was also recently diagnosed but we have been doing

biomedical for two years even before his diagnosis!!!

feel free to email me

isobelwiza@...

isobel

April 27, 2011

He sounds strikingly similar to my son at that age. He received a diagnosis of Asperger Syndrome at 3;9. We did very little formal early intervention, but that is because my background is speech-language pathology, and I already had experience working with individuals with an autism spectrum disorder. I did at-home therapy for at least an hour a day, from the time he was about 2, and my husband really took on the play therapy/social interaction piece, helping to facilitate daily structured interaction.People who know autism recognize certain deficits still. But others do not notice anything. We continue to provide social stories and pragmatic language therapy at home, but he does not hav an IEP. This year he skipped 3rd grade, to help lessen a bit the academic disparity between his grade and performance, and he had no difficulty with that transition at all. He fits in flawlessly to 4th grade. He still is a kid who prefers to read over socialize, who can miss a lot of social cues, but I am ok with that.At any rate, because of his advanced skills, you have the ability to focus heavily on the areas of weakness. I do not even for a moment regret all of that time we put into early intervention!Sent from my iPadOn Apr 26, 2011, at 2:22 PM, Marie y <omissmarie@...> wrote:

My son, Elijah, just got diagnosed with autism. (He is high functioning and verbal but I was told that they are not using the term Aspergers as much because children might get less access to services.) He is 3 years old. Elijah is incredibly gifted in the area of pre-academics. He is able to read (1st grade level), write his letters (upper and lower case) and even do arithmetic. (single digit addition). His deficits are in social interaction, self care and self direction. However, unless a person is well versed in autism, they would not pick up on the fact that he is autistic. I feel like we are getting pressured to do 25-40 hours of therapy per week by the regional center. I'm not sure all of that is really necessary. I want to advocate for what's best for my child and I feel like the best thing is to be home with our family with limited (less than 25 hours of therapy) How do I balance this with the idea that "early intervention is best"?Thoughts?

April 27, 2011

HI Marie, It's been my experience as a parent of a daughter with aspergers that it's best to have early intervention and get as much help as you can now as your son gets older the social learning obstacles become even more challenging. It's also good to see the challenges from another persons perspective. Experience speaks volumes in my opinion. Our daughter is now 24 and doing great and she received, Speech through elementary, O.T. and P.T till she was in early high school. I feel early intervention is key. Hope this helps, RhodaFrom: Marie y <omissmarie@...>"Autism and Aspergers Treatmentegroups" <Autism and Aspergers Treatment >Sent: Tue, April 26, 2011 2:22:35 PMSubject: Newly diagnosed

My son, Elijah, just got diagnosed with autism. (He is high functioning and verbal but I was told that they are not using the term Aspergers as much because children might get less access to services.) He is 3 years old. Elijah is incredibly gifted in the area of pre-academics. He is able to read (1st grade level), write his letters (upper and lower case) and even do arithmetic. (single digit addition). His deficits are in social interaction, self care and self direction. However, unless a person is well versed in autism, they would not pick up on the fact that he is autistic. I feel like we are getting pressured to do 25-40 hours of therapy per week by the regional center. I'm not sure all of that is really necessary. I want to advocate for what's best for my

child and I feel like the best thing is to be home with our family with limited (less than 25 hours of therapy) How do I balance this with the idea that "early intervention is best"?Thoughts?

April 27, 2011

Marie, what prompted the autism diagnosis?

On 4/26/2011 3:24 PM, wrote:

> He sounds strikingly similar to my son at that age. He received a diagnosis

of Asperger Syndrome at 3;9. We did very little formal early intervention, but

that is because my background is speech-language pathology, and I already had

experience working with individuals with an autism spectrum disorder. I did

at-home therapy for at least an hour a day, from the time he was about 2, and my

husband really took on the play therapy/social interaction piece, helping to

facilitate daily structured interaction.

>

> People who know autism recognize certain deficits still. But others do not

notice anything. We continue to provide social stories and pragmatic language

therapy at home, but he does not hav an IEP. This year he skipped 3rd grade, to

help lessen a bit the academic disparity between his grade and performance, and

he had no difficulty with that transition at all. He fits in flawlessly to 4th

grade. He still is a kid who prefers to read over socialize, who can miss a lot

of social cues, but I am ok with that.

>

> At any rate, because of his advanced skills, you have the ability to focus

heavily on the areas of weakness. I do not even for a moment regret all of that

time we put into early intervention!

>

> Sent from my iPad

>

> On Apr 26, 2011, at 2:22 PM, Marie y<omissmarie@...> wrote:

>

>> My son, Elijah, just got diagnosed with autism. (He is high functioning and

verbal but I was told that they are not using the term Aspergers as much because

children might get less access to services.) He is 3 years old. Elijah is

incredibly gifted in the area of pre-academics. He is able to read (1st grade

level), write his letters (upper and lower case) and even do arithmetic. (single

digit addition). His deficits are in social interaction, self care and self

direction. However, unless a person is well versed in autism, they would not

pick up on the fact that he is autistic. I feel like we are getting pressured to

do 25-40 hours of therapy per week by the regional center. I'm not sure all of

that is really necessary. I want to advocate for what's best for my child and I

feel like the best thing is to be home with our family with limited (less than

25 hours of therapy) How do I balance this with the idea that " early

intervention is best " ?Thoughts?

>>

>

April 27, 2011

Hi Marie,I understand your concern. It is scary to send them off for so long at such a young age. I have a 16-year-old high functioning daughter. If I were you I would send my son for a portion of the day and then I would get trained so I could provide the coordinated therapeutic services at home. I would also spend some time at the learning center until I became more comfortable with the idea of my son being there alone, and that would also help my son to adjust. I think 20 hours a week is more than adequate for the first few months. Your son has a lot of promise. Good luck.NinoFrom: Marie y

<omissmarie@...>Subject: Newly diagnosed"Autism and Aspergers Treatmentegroups" <Autism and Aspergers Treatment >Date: Tuesday, April 26, 2011, 8:22 AM

My son, Elijah, just got diagnosed with autism. (He is high functioning and verbal but I was told that they are not using the term Aspergers as much because children might get less access to services.) He is 3 years old. Elijah is incredibly gifted in the area of pre-academics. He is able to read (1st grade level), write his letters (upper and lower case) and even do arithmetic. (single digit addition). His deficits are in social interaction, self care and self direction. However, unless a person is well versed in autism, they would not pick up on the fact that he is autistic. I feel like we are getting pressured to do 25-40 hours of therapy per week by the regional center. I'm not sure all of that is really necessary. I want to advocate for what's

best for my child and I feel like the best thing is to be home with our family with limited (less than 25 hours of therapy) How do I balance this with the idea that "early intervention is best"?Thoughts?

April 27, 2011

Hi Marie,

My son is also 3 yrs old and was diagnosed last June. I am so happy to hear that your son does all these things at his young age. My son is still non-verbal, however, he is very smart for his age. I mean he cant do as much as your son, but he comprehends well for his age and the diagnosis. When my son turned 3, all of his early intervention services stopped. I was so upset because I felt he was really learning and getting used to interacting with other children. So if you can still get services where you live and they are free then I would take the opportunity because of a lot of people are struggling, trying to find their children help, that works. However, if you are that kind of parent that is truly committed to him and take pride in advocating, then you have to continue to do what works for your child. It seems like he has been getting good services with you and the support of your family. Believe me, with all that he is doing with just being 3yrs and autistic, he is doing better than some of the children I have seen with the diagnosis, even mine!

I wish you the best.

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Marie ySent: Tuesday, April 26, 2011 2:23 PMAutism and Aspergers TreatmentegroupsSubject: Newly diagnosed

My son, Elijah, just got diagnosed with autism. (He is high functioning and verbal but I was told that they are not using the term Aspergers as much because children might get less access to services.) He is 3 years old. Elijah is incredibly gifted in the area of pre-academics. He is able to read (1st grade level), write his letters (upper and lower case) and even do arithmetic. (single digit addition). His deficits are in social interaction, self care and self direction. However, unless a person is well versed in autism, they would not pick up on the fact that he is autistic. I feel like we are getting pressured to do 25-40 hours of therapy per week by the regional center. I'm not sure all of that is really necessary. I want to advocate for what's best for my child and I feel like the best thing is to be home with our family with limited (less than 25 hours of therapy) How do I balance this with the idea that "early intervention is best"?Thoughts?

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April 28, 2011

Marie,

I think 25-40 hours/wk. of therapy is ridiculous! At 3, my daughter was in an

Early Intervention Day Care program for therapy and social interaction 2 days a

wk. for 3 hours each. That was plenty of time in my opinion. It sounds like

you are a fantastic teacher for him with all he knows how to do at his young

age, and it is my opinion that he needs you more than he needs to be away from

you in therapy somewhere. If he just needs social interaction and

self-direction help, I think 6 hrs./wk. would be sufficient.

Just my opinion. God bless you in whatever you decide.

Gayla

>

> My son, Elijah, just got diagnosed with autism. (He is high

> functioning and verbal but I was told that they are not using the term

> Aspergers as much because children might get less access to

> services.) He is 3 years old. Elijah is incredibly gifted in the area

> of pre-academics. He is able to read (1st grade level), write his

> letters (upper and lower case) and even do arithmetic. (single digit

> addition). His deficits are in social interaction, self care and self

> direction. However, unless a person is well versed in autism, they

> would not pick up on the fact that he is autistic. I feel like we are

> getting pressured to do 25-40 hours of therapy per week by the

> regional center. I'm not sure all of that is really necessary. I

> want to advocate for what's best for my child and I feel like the best

> thing is to be home with our family with limited (less than 25 hours

> of therapy) How do I balance this with the idea that " early

> intervention is best " ?Thoughts?

>

April 28, 2011

I would talk over your feelings with the group that is recommending the therapy.

Part of the biggest concern with kids like Elijah, is the social aspect. The

therapy will help him find ways to deal with things that do not come easily to

him.

With my daughter, her problem area is also social interaction, and she has a lot

of issues with blurting things out, reacting without stopping first, yelling,

etc- all things that 'average' kids learn at a young age to curtail, and reign

in. Kids who have social interaction problems have a much harder time learning

that, and having it become second nature.

I wish we had gotten Gillian diagnosed a lot younger, so she could have had that

help. At 3, we did not see things that were -that- much different than our son,

who has ADHD. Even our doctor didn't really see much- he said she had perpetual

motion problems (she is constantly moving- it might just be her fingers, or

bouncing her foot, or it might be darting from one area to the next- she does

not stop moving), and that she was fine.

The bigger problems were not noticed until she got older, and was around other

kids. Had we had the help before hand, I think she would have had a much

smoother school life.

While I would certainly try the therapy first, then decide, ultimately, it is up

to you to do what you are comfortable with. If he starts out with less therapy,

you might see some changes in things you weren't expecting, and see that it is

helping. Or, you may not see much difference at all. Each child is different,

each parent is different, and each therapist is different. It's hard to tell

another parent, " This is what will work, do this " , because there is not " cure

all " answer for any of us.

You'll know when you start going through all of this what will feel right to you

and him, and what won't. You have to learn to trust your gut at times, and do

research when you aren't sure.