Re: I think my Son has Aspergers, Doc's wont listen!

October 4, 2010

they will not notice in a visit- you need to video tape his quirky moments and create a log of all symptoms and I mean all.

From: Lena <boo8028@...>Subject: ( ) I think my Son has Aspergers, Doc's wont listen! Date: Monday, October 4, 2010, 3:36 PM

Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take any notice of me, His Teacher and I filled in some screening forms 4 cams in May and have heard nothing from them, Now the Doc is telling me my son is just angry.I don't know where 2 go or what 2 do next.Can any1 give me any suggestions Please?Thank u Lena

October 5, 2010

I also had problems getting our pediatrician to give me the right referral. The

solution for me was to fire my doctor and find someone else who knew more about

autism and who would take me seriously. Trust your instincts and don't give up.

October 5, 2010

How long would u suggest I kept a log 4 b4 taking it 2 the Doctor? A video is a

brilliant idea thank u

>

> From: Lena <boo8028@...>

> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!

>

> Date: Monday, October 4, 2010, 3:36 PM

>

> Â

>

> Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter

2 listen 2 me and take notice of his symptoms but they don't seem 2 take any

notice of me, His Teacher and I filled in some screening forms 4 cams in May and

have heard nothing from them, Now the Doc is telling me my son is just angry.

> I don't know where 2 go or what 2 do next.

> Can any1 give me any suggestions Please?

>

> Thank u

> Lena

>

October 5, 2010

Check to see if there is a developmental pediatrician in your area. My son was also 6 before I could get him a diagnosis and that it the only way that it happened. On Tue, Oct 5, 2010 at 3:36 PM, Lena <boo8028@...> wrote:

How long would u suggest I kept a log 4 b4 taking it 2 the Doctor? A video is a brilliant idea thank u

>

> From: Lena <boo8028@...>

> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!

>

> Date: Monday, October 4, 2010, 3:36 PM

>

> Â

>

> Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take any notice of me, His Teacher and I filled in some screening forms 4 cams in May and have heard nothing from them, Now the Doc is telling me my son is just angry.

> I don't know where 2 go or what 2 do next.

> Can any1 give me any suggestions Please?

>

> Thank u

> Lena

>

-- Sherri

http://friendsmiling.blogspot.com/

October 5, 2010

my short answer is forever - but try to look back at the past few moths and record specifics you know - a day suspended or day had to go to ER or day you were at a bday party and something happened - or just list every struggle that ensues on a daily basis or odd behavior, then from here out keep a diary- it will help with the doctor now and school later- it is a really hard habit to get into but once you do it helps with tracking if therapies work meds work, supplements, diets, etc. you can look at precursors and what ensues after, etc. , looks like you ar e texter so even texting to an email account set up just for that purpose you can later chart or print will help.

Having it written is often the only way any person will listen because they know it must be impacting your life enough for you to take on this monumental task of documenting it for one then they can see the sum of the actual symptoms and try to compare that to symptoms of neurotypical kids and to those with Aspergers or even other disorders. For instance many kids have sensory issues, which can be related to Aspergers and other Autism Spectrum Disorders but does not mean that a child has an autism spectrum disorder - if that would be the case the child might just need Occupation therapy. Certain things are very specific to Asperger children. Often though, doctors are not familiar with this, so you need to ask to see a specialist for an eval or call your local autism agency for a recommendation of evaluators that are specifically familiar with Aspergers and can do a full evaluation. In Wisconsin, Wisconsin Early Autism Project is known for

their rigorous evaluations- they only take on certain cases, so I went there. I knew if they evaluated him and found him to have Aspergers, then we had the right diagnosis. This was after we spent a lot of time with a child psychologist who diagnosed my sona dn found him to have Aspergers, but since my ex was trying to say he did not, and I also had an individual educational evaluation done at Froedtoert by a highly respected neuropsychiatrist, who disagreed and told us my son had ADHD -caveat was she did no autism scales or testing at all because the school did not pay for that and so my ex was convinced she was right. I conceded to allow them to try stimulants, which was wht she reccommended, knowing it was wrong in my heart but also knowing the only way to prove her wrong was to try them. We did- my son became extremely dangerous and near hospitalization. Finally we got him off them and tried other treatments and a med that is actually for children

with autism and irritability ( the kind way of saying aggressive tendencies). He is doing much better now and is in many therapies to help stretch his brain development. He is in much better control of himself, physically so much healthier on the GF/CF diet and supplements and making huge strides with relationships. We have come a long wy but I document everything I can because if I don't I have no proof of what I have seen or what has happened and when. It can be a pain but int he end it saves you time and helps you get the services you need.

From: Lena <boo8028@...>Subject: Re: ( ) I think my Son has Aspergers, Doc's wont listen! Date: Tuesday, October 5, 2010, 2:36 PM

How long would u suggest I kept a log 4 b4 taking it 2 the Doctor? A video is a brilliant idea thank u > > > From: Lena <boo8028@...>> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!> > Date: Monday,

October 4, 2010, 3:36 PM> > > Ã‚ > > > > Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take any notice of me, His Teacher and I filled in some screening forms 4 cams in May and have heard nothing from them, Now the Doc is telling me my son is just angry.> I don't know where 2 go or what 2 do next.> Can any1 give me any suggestions Please?> > Thank u > Lena>

October 6, 2010

Our dd's preschool teacher and kindergarten teacher didn't take my concerns

seriously. They said she would grow out of it. I thought she was socially

immature, but there were other things happening too and I knew something else

was going on. I finally went to the metro Children's Hospital and Clinic for a

formal assessment where they were familiar with a variety of issues. There were

forms for the teachers, us, and others (if wanted). Then our dd spent about an

hour/hour and a half with at the clinic for an assessment (she had fun, but said

some things were difficult), and we learned that she had Aspergers. Go to the

best place you can find that knows about Autism Spectrum Disorders/ADD/etc. Good

luck to you and take care! -Kari

>

> Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter

2 listen 2 me and take notice of his symptoms but they don't seem 2 take any

notice of me, His Teacher and I filled in some screening forms 4 cams in May and

have heard nothing from them, Now the Doc is telling me my son is just angry.

> I don't know where 2 go or what 2 do next.

> Can any1 give me any suggestions Please?

>

> Thank u

> Lena

>

October 6, 2010

Hi,

I never post on this page, but my son is 5 was having the same problem. All I

can say is videotape. It was the best thing I ever did. He is now diagnosed and

no one took notice before that!

>

October 6, 2010

Our son wasn't diagnosed until he was 16 years old unfortunately, as he is a

fairly mild case, but aspie just the same. Definitely document everything and

taking videos of his odd behavior would help too.

Good luck to you and your family.

Dawn Marie

>

> From: Lena <boo8028@...>

> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!

>

> Date: Monday, October 4, 2010, 3:36 PM

>

> Â

>

> Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter

2 listen 2 me and take notice of his symptoms but they don't seem 2 take any

notice of me, His Teacher and I filled in some screening forms 4 cams in May and

have heard nothing from them, Now the Doc is telling me my son is just angry.

> I don't know where 2 go or what 2 do next.

> Can any1 give me any suggestions Please?

>

> Thank u

> Lena

>

October 6, 2010

Switch doctors, and try agan. Also, if you have money find a Autism/Aspergers

center attached to a university that does thorough testing. Worth the $500.

You also have the right to have him evaluated by the school system as well

through child find. Put your concerns in writing and request psychological

eval, speech, OT, and a functional behavior assessment at a minimum. If you

aren't satisfied with their results, then request an IEE (independent

educational evaluation).

-

> >

> > From: Lena <boo8028@>

> > Subject: ( ) I think my Son has Aspergers, Doc's wont listen!

> >

> > Date: Monday, October 4, 2010, 3:36 PM

> >

> > Â

> >

> > Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a

Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take

any notice of me, His Teacher and I filled in some screening forms 4 cams in May

and have heard nothing from them, Now the Doc is telling me my son is just

angry.

> > I don't know where 2 go or what 2 do next.

> > Can any1 give me any suggestions Please?

> >

> > Thank u

> > Lena

> >

>

October 11, 2010

May I ask which med worked for you finally?

From: Jadczak <bjadczak@...> Sent: Tue, October 5, 2010 6:59:12 PMSubject: Re: ( ) I think my Son has Aspergers, Doc's wont listen!

my short answer is forever - but try to look back at the past few moths and record specifics you know - a day suspended or day had to go to ER or day you were at a bday party and something happened - or just list every struggle that ensues on a daily basis or odd behavior, then from here out keep a diary- it will help with the doctor now and school later- it is a really hard habit to get into but once you do it helps with tracking if therapies work meds work, supplements, diets, etc. you can look at precursors and what ensues after, etc. , looks like you ar e texter so even texting to an email account set up just for that purpose you can later chart or print will help.

Having it written is often the only way any person will listen because they know it must be impacting your life enough for you to take on this monumental task of documenting it for one then they can see the sum of the actual symptoms and try to compare that to symptoms of neurotypical kids and to those with Aspergers or even other disorders. For instance many kids have sensory issues, which can be related to Aspergers and other Autism Spectrum Disorders but does not mean that a child has an autism spectrum disorder - if that would be the case the child might just need Occupation therapy. Certain things are very specific to Asperger children. Often though, doctors are not familiar with this, so you need to ask to see a specialist for an eval or call your local autism agency for a recommendation of evaluators that are specifically familiar with Aspergers and can do a full evaluation. In Wisconsin, Wisconsin Early Autism Project is known for

their rigorous evaluations- they only take on certain cases, so I went there. I knew if they evaluated him and found him to have Aspergers, then we had the right diagnosis. This was after we spent a lot of time with a child psychologist who diagnosed my sona dn found him to have Aspergers, but since my ex was trying to say he did not, and I also had an individual educational evaluation done at Froedtoert by a highly respected neuropsychiatrist, who disagreed and told us my son had ADHD -caveat was she did no autism scales or testing at all because the school did not pay for that and so my ex was convinced she was right. I conceded to allow them to try stimulants, which was wht she reccommended, knowing it was wrong in my heart but also knowing the only way to prove her wrong was to try them. We did- my son became extremely dangerous and near hospitalization. Finally we got him off them and tried other treatments and a med that is actually for children

with autism and irritability ( the kind way of saying aggressive tendencies). He is doing much better now and is in many therapies to help stretch his brain development. He is in much better control of himself, physically so much healthier on the GF/CF diet and supplements and making huge strides with relationships. We have come a long wy but I document everything I can because if I don't I have no proof of what I have seen or what has happened and when. It can be a pain but int he end it saves you time and helps you get the services you need.

From: Lena <boo8028@...>Subject: Re: ( ) I think my Son has Aspergers, Doc's wont listen! Date: Tuesday, October 5, 2010, 2:36 PM

How long would u suggest I kept a log 4 b4 taking it 2 the Doctor? A video is a brilliant idea thank u > > > From: Lena <boo8028@...>> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!> > Date: Monday, October 4, 2010, 3:36 PM> > > Ã‚ > > > > Hi, My Son

is 6 years old, I have been trying 4 almost 3 years 2 get a Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take any notice of me, His Teacher and I filled in some screening forms 4 cams in May and have heard nothing from them, Now the Doc is telling me my son is just angry.> I don't know where 2 go or what 2 do next.> Can any1 give me any suggestions Please?> > Thank u > Lena>

October 12, 2010

Another dr. Video tape it. Have the teacher video tape him. Took me 5 years to get my son dx and I had to move to another state!

Tracey

In a message dated 10/12/2010 11:01:57 A.M. Central Daylight Time (M, bjadczak@... writes:

My son is on a variety of supplements that are prescription strength but the one that seems to have the most impact on his behavior is Calm - PRT, he also takes lamictal ( mood stabilizer and anti seizure med for mood and abnormal EEG) and abilify (2.5 mg in am- it is for schizpphrenia, bipolar, and autism w/ irritability - the nice way of saying aggression).

We found that the abilify helped him to reason through things more, ask for help when he is overwhelmed, etc, but when he is not on the Calm-PRT he is still aggressive and has about 4-5 meltdowns a day, so it is defintely the combination of things that work. - I have tried weaning him off the CALM-PRT a few times and every time I do, he goes back to aggressive behaviors and bring constantly frustrated by every little thing, and is just more negative in general about the world - on the meds and calm-prt he is a glass half full kid, off the calm-prt or abilify he is a glass half empty kid, and why does he have a drop more than me and you always buy stuff for him but never for me - you get the idea- it took us a very long time to figure this combo out and as I read al teh horrow stories of kids having weight issues and blood sugar issues with abilify I constantly monitor him and worry some day we will not be able to use it, but for now he is doing good on it and has had no weight issues- although he is hungry all teh time

We also noticed something else interesting - around Thanksgiving we had a ton of turkey because he is Gf Cf an i had to cook him one for a school thnkg and then for Thanksgiving. He was totally calmer teh week we were eating turkey almost every night, so we started having him take l-tryptophan and htp - we noticed less hyperactivity and more concentration and ability to focus as soon as we did this.

At times I feel guilty about he number of pills he takes every day, but when we tryt op back off we see a return of symptoms and him having much poorer health physically so I have come to accept that this may be his life for a while, and if it keeps him out of being hopsitalized, then the daily annoyance of taking pills is worth it. We have been on thei journey of discovery for about 3 years now since the diagnosis and we are still elarning along he way, but we are defintiely ina better place now than we were then.

From: Lena <boo8028@...>Subject: Re: ( ) I think my Son has Aspergers, Doc's wont listen! Date: Tuesday, October 5, 2010, 2:36 PM

How long would u suggest I kept a log 4 b4 taking it 2 the Doctor? A video is a brilliant idea thank u > > > From: Lena <boo8028@...>> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!> > Date: Monday, October 4, 2010, 3:36 PM> > > Ã‚ > > > > Hi, My Son is 6 years old, I have been trying 4 almost 3 years 2 get a Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take any notice of me, His Teacher and I filled in some screening forms 4 cams in May and have heard nothing from them, Now the Doc is telling me my son is just angry.> I don't know where 2 go or what 2 do next.> Can any1 give me any suggestions Please?> > Thank u > Lena>

October 12, 2010

My son is on a variety of supplements that are prescription strength but the one that seems to have the most impact on his behavior is Calm - PRT, he also takes lamictal ( mood stabilizer and anti seizure med for mood and abnormal EEG) and abilify (2.5 mg in am- it is for schizpphrenia, bipolar, and autism w/ irritability - the nice way of saying aggression).

We found that the abilify helped him to reason through things more, ask for help when he is overwhelmed, etc, but when he is not on the Calm-PRT he is still aggressive and has about 4-5 meltdowns a day, so it is defintely the combination of things that work. - I have tried weaning him off the CALM-PRT a few times and every time I do, he goes back to aggressive behaviors and bring constantly frustrated by every little thing, and is just more negative in general about the world - on the meds and calm-prt he is a glass half full kid, off the calm-prt or abilify he is a glass half empty kid, and why does he have a drop more than me and you always buy stuff for him but never for me - you get the idea- it took us a very long time to figure this combo out and as I read al teh horrow stories of kids having weight issues and blood sugar issues with abilify I constantly monitor him and worry some day we will not be able to use it, but for now he is doing good

on it and has had no weight issues- although he is hungry all teh time

We also noticed something else interesting - around Thanksgiving we had a ton of turkey because he is Gf Cf an i had to cook him one for a school thnkg and then for Thanksgiving. He was totally calmer teh week we were eating turkey almost every night, so we started having him take l-tryptophan and htp - we noticed less hyperactivity and more concentration and ability to focus as soon as we did this.

At times I feel guilty about he number of pills he takes every day, but when we tryt op back off we see a return of symptoms and him having much poorer health physically so I have come to accept that this may be his life for a while, and if it keeps him out of being hopsitalized, then the daily annoyance of taking pills is worth it. We have been on thei journey of discovery for about 3 years now since the diagnosis and we are still elarning along he way, but we are defintiely ina better place now than we were then.

From: Lena <boo8028@...>Subject: Re: ( ) I think my Son has Aspergers, Doc's wont listen! Date: Tuesday, October 5, 2010, 2:36 PM

How long would u suggest I kept a log 4 b4 taking it 2 the Doctor? A video is a brilliant idea thank u > > > From: Lena <boo8028@...>> Subject: ( ) I think my Son has Aspergers, Doc's wont listen!> > Date: Monday, October 4, 2010, 3:36 PM> > > Ã‚ > > > > Hi, My Son

is 6 years old, I have been trying 4 almost 3 years 2 get a Docter 2 listen 2 me and take notice of his symptoms but they don't seem 2 take any notice of me, His Teacher and I filled in some screening forms 4 cams in May and have heard nothing from them, Now the Doc is telling me my son is just angry.> I don't know where 2 go or what 2 do next.> Can any1 give me any suggestions Please?> > Thank u > Lena>

October 14, 2010

Thank you for your response. We are now on Abilify since the last post. Working great. I never heard of CALM-PRT. What is that? Do I need a Dr. for it?

Cathleen

From: Jadczak <bjadczak@...> Sent: Tue, October 12, 2010 7:16:58 AMSubject: Re: ( ) I think my Son has Aspergers, Doc's wont listen!