Re: I have to come to some type of resolution

[Guest guest]

Oh, ,

My heart hurts with you tonight. I so understand your pain. You are trying so

hard.

How old is your son, again? And where do you live? There are answers. There

are.

Rest tonight, as you are overwhelmed. You need to give yourself that sometimes,

so you can fight on tomorrow.

Does your son have ABA therapy? And have you tried Neurotherapy? And if there

is any way at all, I think Dr. Goldberg could help your son. Between, viral and

fungal treatment, and the fine tuning of some SSRI's, I'm sure that there is

still something that can be done for your dear one.

Take care and keep reaching out to the group for support. We all understand and

want to help.

Sheryl

________________________________

From: and Freeman <freemanbk@...>

Sent: Mon, February 21, 2011 5:08:16 PM

Subject: I have to come to some type of resolution

I am at the point where I have to come face-to-face with the fact that our

son just might not get any better. Financially we are drained...emotionally,

well I don't even know if I have any emotions left. I came to grips with the

fact that was not being 'bad' because of bad parenting just this year

(I think..). I came to grips with it but it still hurts a lot when he can't

even be left alone without destroying things, making fun of other kids or

just being hard to be around.

Today I let him travel with my friend and her son in her van. It was a

complete disaster. As soon as he got in the van he started picking at her

son and then flinging her purse around the van. She said she had to pull

over and speak to him several times. I can't put him into any group

activities because he is too old to have me supervising for most of them and

he is too hyperactive and mean-spirited to the other kids for the leaders to

take him. We tried Beavers last year and I was the Beaver Leader so that I

could keep my eye on him. I could not put him Cubs this year as I know he

would be too disruptive to the class and they don't allow me supervise.

It breaks my heart and I feel that it may be too late to help him. We have

tried, and are trying, as best as we can. We can't afford to fly to Dr.

G and we aren't seeing a lot of change with while on milk-free, low

sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as he

was when he was 2...not a lot has changed. I feel like he is missing out on

so much in his life. A child who could read at 2 and do chess at 4 but can't

be left alone for a minute because he might hurt another human being and

grin about it while doing it. I am having a bad day but it isn't unlike many

others. I don't have my 'cry spot' anymore but that doesn't mean I would

like to ball up and cry in one tonight.

[Guest guest]

Thank god for this group – I am sure none of want to belong to this club but I

do thank god I have you all!!!!

From: [mailto: ] On Behalf Of Sheryl

Saturnino

Sent: February-21-11 9:58 PM

Subject: Re: I have to come to some type of resolution

Oh, ,

My heart hurts with you tonight. I so understand your pain. You are trying so

hard.

How old is your son, again? And where do you live? There are answers. There

are.

Rest tonight, as you are overwhelmed. You need to give yourself that sometimes,

so you can fight on tomorrow.

Does your son have ABA therapy? And have you tried Neurotherapy? And if there

is any way at all, I think Dr. Goldberg could help your son. Between, viral and

fungal treatment, and the fine tuning of some SSRI's, I'm sure that there is

still something that can be done for your dear one.

Take care and keep reaching out to the group for support. We all understand and

want to help.

Sheryl

________________________________

From: and Freeman <freemanbk@...

<mailto:freemanbk%40ns.sympatico.ca> >

<mailto:%40>

Sent: Mon, February 21, 2011 5:08:16 PM

Subject: I have to come to some type of resolution

I am at the point where I have to come face-to-face with the fact that our

son just might not get any better. Financially we are drained...emotionally,

well I don't even know if I have any emotions left. I came to grips with the

fact that was not being 'bad' because of bad parenting just this year

(I think..). I came to grips with it but it still hurts a lot when he can't

even be left alone without destroying things, making fun of other kids or

just being hard to be around.

Today I let him travel with my friend and her son in her van. It was a

complete disaster. As soon as he got in the van he started picking at her

son and then flinging her purse around the van. She said she had to pull

over and speak to him several times. I can't put him into any group

activities because he is too old to have me supervising for most of them and

he is too hyperactive and mean-spirited to the other kids for the leaders to

take him. We tried Beavers last year and I was the Beaver Leader so that I

could keep my eye on him. I could not put him Cubs this year as I know he

would be too disruptive to the class and they don't allow me supervise.

It breaks my heart and I feel that it may be too late to help him. We have

tried, and are trying, as best as we can. We can't afford to fly to Dr.

G and we aren't seeing a lot of change with while on milk-free, low

sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as he

was when he was 2...not a lot has changed. I feel like he is missing out on

so much in his life. A child who could read at 2 and do chess at 4 but can't

be left alone for a minute because he might hurt another human being and

grin about it while doing it. I am having a bad day but it isn't unlike many

others. I don't have my 'cry spot' anymore but that doesn't mean I would

like to ball up and cry in one tonight.

[Guest guest]

is 8.5 yrs old. Extremely high functioning in that he has lots of language

and had since he was very young. He was talking early but never asked about

anyone – only things. Play skills stunk as a child but have greatly improved

over the years. He has lost a lot of eye contact while on Nystatin and is very

hyper while on it. He says his belly hurts and I have ordered kyodophilus (sp?)

which should be here next week. He is milk free and has been for years. Although

he sneaks the odd piece of milk chocolate and eats the odd pizza slice but picks

the cheese off of it.

When I was having I was preeclampsic and that is indicated in Dr. G’s

book as a high risk for . If anyone knows why I would love to hear the

answer. did not burp as a baby – ever - I kid you not. Also, he had

hiccups for the first 3 yrs of his life – every single day, multiple times a

day. He would have been declared a failure to thrive baby but my dr told me if

he declared him as a FTT he would be put in the hospital and be tube fed. I

pretty much force-fed him for the first year. I was taking Bromomcryptine for a

pituitary macro adenoma and could not breast feed as they said it would be

passed through the breast milk. had and early UTI, colic and was very

fussy. Lord knows how we got the energy to have another kid! Lol!

He has close friends who like playing with him (really!) but he can be very mean

to them and at times cruel. Sometimes he can be a great, loving little kid but

he has this wall of viciousness that is really hard to watch. He gets into

giggle fits and has been going through a continuous daily round of them since

starting daily Nystatin. He is also very hyper and has trouble with

self-control.

He has never had ABA but did have 1 year of Early Intensive Behavioural

Intervention (EIBI) that helped a lot. They came to our house and the preschool

and really helped him. That is Nova Scotia’s version of ABA. It is based on

Pivotal Response Therapy (PRT) The Koegel approach

http://www.koegelautism.com/

As for SSRIs, he has never found one that worked even at low doses. We have

tried Prozac, Lexapro, Zoloft but they keep him up at night and he loses his

appetite. I am trying him on Tryptan which is a Rx tryptophan which seems to

help him with his memory and spontaneous thoughts. It is suppose to increase

serotonin in the brain. I find he does do better on small doses as it increases

his appetite and make him better to be around. He asks for playdates all the

time when he takes it.

He came to me tonight and cried about not being able to go into hockey like his

friends. We tried to put him in this past September, but he became overwhelmed

and went after the other players with his hockey stick. That happened while all

of the other parents and our neighbours were sitting with us and watching while

all the kids were trying out. That was a hard one to swallow that day...another

‘retreat to the cry spot’ day. Anyway, I am going to take your advice and go

to bed. Tomorrow is another day. Being a mom for a kid is not for the faint

of heart. J

From: [mailto: ] On Behalf Of Sheryl

Saturnino

Sent: February-21-11 9:58 PM

Subject: Re: I have to come to some type of resolution

Oh, ,

My heart hurts with you tonight. I so understand your pain. You are trying so

hard.

How old is your son, again? And where do you live? There are answers. There

are.

Rest tonight, as you are overwhelmed. You need to give yourself that sometimes,

so you can fight on tomorrow.

Does your son have ABA therapy? And have you tried Neurotherapy? And if there

is any way at all, I think Dr. Goldberg could help your son. Between, viral and

fungal treatment, and the fine tuning of some SSRI's, I'm sure that there is

still something that can be done for your dear one.

Take care and keep reaching out to the group for support. We all understand and

want to help.

Sheryl

________________________________

From: and Freeman <freemanbk@...

<mailto:freemanbk%40ns.sympatico.ca> >

<mailto:%40>

Sent: Mon, February 21, 2011 5:08:16 PM

Subject: I have to come to some type of resolution

I am at the point where I have to come face-to-face with the fact that our

son just might not get any better. Financially we are drained...emotionally,

well I don't even know if I have any emotions left. I came to grips with the

fact that was not being 'bad' because of bad parenting just this year

(I think..). I came to grips with it but it still hurts a lot when he can't

even be left alone without destroying things, making fun of other kids or

just being hard to be around.

Today I let him travel with my friend and her son in her van. It was a

complete disaster. As soon as he got in the van he started picking at her

son and then flinging her purse around the van. She said she had to pull

over and speak to him several times. I can't put him into any group

activities because he is too old to have me supervising for most of them and

he is too hyperactive and mean-spirited to the other kids for the leaders to

take him. We tried Beavers last year and I was the Beaver Leader so that I

could keep my eye on him. I could not put him Cubs this year as I know he

would be too disruptive to the class and they don't allow me supervise.

It breaks my heart and I feel that it may be too late to help him. We have

tried, and are trying, as best as we can. We can't afford to fly to Dr.

G and we aren't seeing a lot of change with while on milk-free, low

sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as he

was when he was 2...not a lot has changed. I feel like he is missing out on

so much in his life. A child who could read at 2 and do chess at 4 but can't

be left alone for a minute because he might hurt another human being and

grin about it while doing it. I am having a bad day but it isn't unlike many

others. I don't have my 'cry spot' anymore but that doesn't mean I would

like to ball up and cry in one tonight.

[Guest guest]

Nystatin is not useful. He needs a systematic anti-fungal like Nizoral,

Diflucan or Lamisil. Nystatin is mostly flushed through the system.

_____

From: [mailto: ] On Behalf Of

and Freeman

Sent: Monday, February 21, 2011 5:08 PM

Subject: I have to come to some type of resolution

I am at the point where I have to come face-to-face with the fact that our

son just might not get any better. Financially we are drained...emotionally,

well I don't even know if I have any emotions left. I came to grips with the

fact that was not being 'bad' because of bad parenting just this year

(I think..). I came to grips with it but it still hurts a lot when he can't

even be left alone without destroying things, making fun of other kids or

just being hard to be around.

Today I let him travel with my friend and her son in her van. It was a

complete disaster. As soon as he got in the van he started picking at her

son and then flinging her purse around the van. She said she had to pull

over and speak to him several times. I can't put him into any group

activities because he is too old to have me supervising for most of them and

he is too hyperactive and mean-spirited to the other kids for the leaders to

take him. We tried Beavers last year and I was the Beaver Leader so that I

could keep my eye on him. I could not put him Cubs this year as I know he

would be too disruptive to the class and they don't allow me supervise.

It breaks my heart and I feel that it may be too late to help him. We have

tried, and are trying, as best as we can. We can't afford to fly to Dr.

G and we aren't seeing a lot of change with while on milk-free, low

sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as he

was when he was 2...not a lot has changed. I feel like he is missing out on

so much in his life. A child who could read at 2 and do chess at 4 but can't

be left alone for a minute because he might hurt another human being and

grin about it while doing it. I am having a bad day but it isn't unlike many

others. I don't have my 'cry spot' anymore but that doesn't mean I would

like to ball up and cry in one tonight.

[Guest guest]

I don't know what to say except that I have been here many times, and

sometimes that is my only comfort knowing others are in the same boat.

I have been with Dr G for 9 years and I still believe it's better then

if I had not been but it is still hard. I just have had to jump away

from what the world expects, because it is not going to happen in my

house. I still have some friends and some family, not so much of a

support, because if it's not life or death situation in the worlds eyes

people don't see the need to help. I have experienced friends that have

kids with cancer or something else Cf...etc and everyone is there, full

on support, but not for me, it's been a shunning (for a lack of a better

word) no support, no help, no fund raisers, even though we needed them,

it's cost us a fortune. It's a mental disorder after all (not, that's

what others think) so we have always been on our own. We are doing the

best we can on our own, no help from family, government or other. It

sucks but I have two of the most gorgeous boys in the world and if no

one else sees that. Well, I won't cuss right now because this is not the

place. But the world needs to change and that's too big or a paradigm

for me or anyone else to change.

> I am at the point where I have to come face-to-face with the fact that our

> son just might not get any better. Financially we are

> drained...emotionally,

> well I don't even know if I have any emotions left. I came to grips

> with the

> fact that was not being 'bad' because of bad parenting just this

> year

> (I think..). I came to grips with it but it still hurts a lot when he

> can't

> even be left alone without destroying things, making fun of other kids or

> just being hard to be around.

>

> Today I let him travel with my friend and her son in her van. It was a

> complete disaster. As soon as he got in the van he started picking at her

> son and then flinging her purse around the van. She said she had to pull

> over and speak to him several times. I can't put him into any group

> activities because he is too old to have me supervising for most of

> them and

> he is too hyperactive and mean-spirited to the other kids for the

> leaders to

> take him. We tried Beavers last year and I was the Beaver Leader so that I

> could keep my eye on him. I could not put him Cubs this year as I know he

> would be too disruptive to the class and they don't allow me supervise.

>

> It breaks my heart and I feel that it may be too late to help him. We have

> tried, and are trying, as best as we can. We can't afford to fly

> to Dr.

> G and we aren't seeing a lot of change with while on milk-free, low

> sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited

> as he

> was when he was 2...not a lot has changed. I feel like he is missing

> out on

> so much in his life. A child who could read at 2 and do chess at 4 but

> can't

> be left alone for a minute because he might hurt another human being and

> grin about it while doing it. I am having a bad day but it isn't

> unlike many

> others. I don't have my 'cry spot' anymore but that doesn't mean I would

> like to ball up and cry in one tonight.

>

>

[Guest guest]

This is the first mail I've been able to respond to for the last few weeks and

it's because I'm in almost the exact same place. My son has a 11.5 yo body, a

14-15 yo mind, and a 7 year old social and emotional status. We have seen so

much clarity with the meds from Dr. and I have to constantly remind

myself that what we are doing now is cleaning up those years he missed out on

because of the PDD/Aspergers. We have had so many behavioral issues at school

this year but he's flying through the curriculum. We found someone to do CBT

therapy but she stipulates we have a classroom shadow to make sure the sessions

are followed through, given we live out of the US we are looking at about $300 a

day minimum...I can't even afford one month because our insurance doesn't cover

shadows. On the flip side I can't not afford it if we want this gap closed in

the most efficient manner without spending more money undoing what he's learning

now. You should remember that for the past 5 years Cam had to be medicated with

Risperdone and Concerta was added to the mix because of his violence level.

This last summer we took him off of all of it...he was a total zombie.

Friday Cam ended up with half a day of in school suspension and half a day of

out of school suspension for fighting. He wasn't the one who threw the first

punch but he egged it on by not giving the other boy a paper he found on the

floor. The other boy got the same punishment, which I questioned since he threw

the first punch but given this is the same boy all the problems have been with

and the level of Cam's reaction (Cam had to held down by a couple of high school

boys) they felt they both needed some reflection.

I hadn't even gotten home from dropping him off at school when this all went

down. Left my cell phone at home since Patrice is out of town and I was

dropping them off so when I got home I had a message on the house phone from my

Mom. Cam couldn't get me so he called her in the US! Had to turn around and

go back. Turns out the duty teacher was late so no supervision before school

didn't help the situation but that is being handled separately.

This kind of thing is starting to occur more often and with the onset of puberty

it's common even for healthy kids. What's tough is when it seems like everyone

is against your kid and they don't really understand to what lengths you go to

help him. Just one more wall for them climb once they overcome any of the

social issues.

Sometimes I wish I was past the crying stage like you...I just start welling up

every time I think about him. I see so much potential but keep running up

against this wall and while my husband works his butt off to afford what he

needs, I'm pretty much on my own for implementation. I'm not the kind of person

to throw in the towel but I worry about what my other child is loosing out on,

to what detriment is my marriage because of the stress, etc.?

The only thing I see differently with Cameron is he is on an anti-depressant

because he is deemed high risk for suicide because of his own frustration with

himself and he takes Lamisil because of his med combination. We are currently

waiting on some supplement meds to arrive from the US under the guidance of Dr.

R. He wants us to add 30 mg. of DM twice a day. DM is a glutamate suppressant

and he thinks it's highly possible that the lack of impulse control could be due

to an excess in glutamate. To test this we need to give him a dose of Desryl

(an over the counter cough medicine with DM added) twice a day and monitor the

results. These kinds of things have made a difference with Cameron in the past

so I'm hoping it's what we need to peel off another layer of his never ending

onion of a problem.

As I look back for the last 8 years though, that onion is considerably

smaller...we've gone from an Outback blooming something to a little bit less

than medium sized one. I don't know about fees, but I've found Dr. 's to

be very affordable compared to many of the other treatments we've tried. The

meds for the most part are reasonable as well...but I pick up the Valtrex in

Mexico when I go home to Texas for summers.

I don't know if any of that can communicate to you, but I just wanted to let you

know you're not alone and I'm sure there are many more out there like us...we

just have our hands so full we are doing good to lurk little lone post. That's

why I'm so appreciative to people like Marcia and who are constants and

can help me see there is a future because right now I feel like I'm clawing my

way out of a well and my fingers are nubs.

>

> I am at the point where I have to come face-to-face with the fact that our

> son just might not get any better. Financially we are drained...emotionally,

> well I don't even know if I have any emotions left. I came to grips with the

> fact that was not being 'bad' because of bad parenting just this year

> (I think..). I came to grips with it but it still hurts a lot when he can't

> even be left alone without destroying things, making fun of other kids or

> just being hard to be around.

>

>

>

> Today I let him travel with my friend and her son in her van. It was a

> complete disaster. As soon as he got in the van he started picking at her

> son and then flinging her purse around the van. She said she had to pull

> over and speak to him several times. I can't put him into any group

> activities because he is too old to have me supervising for most of them and

> he is too hyperactive and mean-spirited to the other kids for the leaders to

> take him. We tried Beavers last year and I was the Beaver Leader so that I

> could keep my eye on him. I could not put him Cubs this year as I know he

> would be too disruptive to the class and they don't allow me supervise.

>

>

>

> It breaks my heart and I feel that it may be too late to help him. We have

> tried, and are trying, as best as we can. We can't afford to fly to Dr.

> G and we aren't seeing a lot of change with while on milk-free, low

> sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as he

> was when he was 2...not a lot has changed. I feel like he is missing out on

> so much in his life. A child who could read at 2 and do chess at 4 but can't

> be left alone for a minute because he might hurt another human being and

> grin about it while doing it. I am having a bad day but it isn't unlike many

> others. I don't have my 'cry spot' anymore but that doesn't mean I would

> like to ball up and cry in one tonight.

>

>

>

>

[Guest guest]

So I gave him his Trytan last night (just a small dose) and he was certainly

more alert and interactive and remembering better today. Later on in the

morning he started having meltdowns so I gave him vit c (Kirkman

hypoallergenic) and his b vits (AOR brand with very little non-medicinal

ingredients - they do not use magnesium stearate). He is doing better now. I

am going to hold off on the nystatin until he goes to bed and see if that

makes a difference in his day. Thank you all for the warm wishes. They keep

me going! PS - What is Dr. G's position on bi vitamins? Does he feel that

there could be a use for them in some kids?

From: [mailto: ] On Behalf Of Jerri

Gann

Sent: February-22-11 12:14 AM

Subject: Re: I have to come to some type of resolution

I don't know what to say except that I have been here many times, and

sometimes that is my only comfort knowing others are in the same boat.

I have been with Dr G for 9 years and I still believe it's better then

if I had not been but it is still hard. I just have had to jump away

from what the world expects, because it is not going to happen in my

house. I still have some friends and some family, not so much of a

support, because if it's not life or death situation in the worlds eyes

people don't see the need to help. I have experienced friends that have

kids with cancer or something else Cf...etc and everyone is there, full

on support, but not for me, it's been a shunning (for a lack of a better

word) no support, no help, no fund raisers, even though we needed them,

it's cost us a fortune. It's a mental disorder after all (not, that's

what others think) so we have always been on our own. We are doing the

best we can on our own, no help from family, government or other. It

sucks but I have two of the most gorgeous boys in the world and if no

one else sees that. Well, I won't cuss right now because this is not the

place. But the world needs to change and that's too big or a paradigm

for me or anyone else to change.

> I am at the point where I have to come face-to-face with the fact that our

> son just might not get any better. Financially we are

> drained...emotionally,

> well I don't even know if I have any emotions left. I came to grips

> with the

> fact that was not being 'bad' because of bad parenting just this

> year

> (I think..). I came to grips with it but it still hurts a lot when he

> can't

> even be left alone without destroying things, making fun of other kids or

> just being hard to be around.

>

> Today I let him travel with my friend and her son in her van. It was a

> complete disaster. As soon as he got in the van he started picking at her

> son and then flinging her purse around the van. She said she had to pull

> over and speak to him several times. I can't put him into any group

> activities because he is too old to have me supervising for most of

> them and

> he is too hyperactive and mean-spirited to the other kids for the

> leaders to

> take him. We tried Beavers last year and I was the Beaver Leader so that I

> could keep my eye on him. I could not put him Cubs this year as I know he

> would be too disruptive to the class and they don't allow me supervise.

>

> It breaks my heart and I feel that it may be too late to help him. We have

> tried, and are trying, as best as we can. We can't afford to fly

> to Dr.

> G and we aren't seeing a lot of change with while on milk-free, low

> sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited

> as he

> was when he was 2...not a lot has changed. I feel like he is missing

> out on

> so much in his life. A child who could read at 2 and do chess at 4 but

> can't

> be left alone for a minute because he might hurt another human being and

> grin about it while doing it. I am having a bad day but it isn't

> unlike many

> others. I don't have my 'cry spot' anymore but that doesn't mean I would

> like to ball up and cry in one tonight.

>

>

[Guest guest]

Can anyone tell me why the NNY Autism Center's website is not working? Also,

does anyone a CURRENT phone number for Dr. ? Does he do phone

consults? Thanks!

From: [mailto: ] On Behalf Of RobinW

Sent: February-22-11 4:05 AM

Subject: Re: I have to come to some type of resolution

This is the first mail I've been able to respond to for the last few weeks

and it's because I'm in almost the exact same place. My son has a 11.5 yo

body, a 14-15 yo mind, and a 7 year old social and emotional status. We have

seen so much clarity with the meds from Dr. and I have to

constantly remind myself that what we are doing now is cleaning up those

years he missed out on because of the PDD/Aspergers. We have had so many

behavioral issues at school this year but he's flying through the

curriculum. We found someone to do CBT therapy but she stipulates we have a

classroom shadow to make sure the sessions are followed through, given we

live out of the US we are looking at about $300 a day minimum...I can't even

afford one month because our insurance doesn't cover shadows. On the flip

side I can't not afford it if we want this gap closed in the most efficient

manner without spending more money undoing what he's learning now. You

should remember that for the past 5 years Cam had to be medicated with

Risperdone and Concerta was added to the mix because of his violence level.

This last summer we took him off of all of it...he was a total zombie.

Friday Cam ended up with half a day of in school suspension and half a day

of out of school suspension for fighting. He wasn't the one who threw the

first punch but he egged it on by not giving the other boy a paper he found

on the floor. The other boy got the same punishment, which I questioned

since he threw the first punch but given this is the same boy all the

problems have been with and the level of Cam's reaction (Cam had to held

down by a couple of high school boys) they felt they both needed some

reflection.

I hadn't even gotten home from dropping him off at school when this all went

down. Left my cell phone at home since Patrice is out of town and I was

dropping them off so when I got home I had a message on the house phone from

my Mom. Cam couldn't get me so he called her in the US! Had to turn around

and go back. Turns out the duty teacher was late so no supervision before

school didn't help the situation but that is being handled separately.

This kind of thing is starting to occur more often and with the onset of

puberty it's common even for healthy kids. What's tough is when it seems

like everyone is against your kid and they don't really understand to what

lengths you go to help him. Just one more wall for them climb once they

overcome any of the social issues.

Sometimes I wish I was past the crying stage like you...I just start welling

up every time I think about him. I see so much potential but keep running up

against this wall and while my husband works his butt off to afford what he

needs, I'm pretty much on my own for implementation. I'm not the kind of

person to throw in the towel but I worry about what my other child is

loosing out on, to what detriment is my marriage because of the stress,

etc.?

The only thing I see differently with Cameron is he is on an anti-depressant

because he is deemed high risk for suicide because of his own frustration

with himself and he takes Lamisil because of his med combination. We are

currently waiting on some supplement meds to arrive from the US under the

guidance of Dr. R. He wants us to add 30 mg. of DM twice a day. DM is a

glutamate suppressant and he thinks it's highly possible that the lack of

impulse control could be due to an excess in glutamate. To test this we need

to give him a dose of Desryl (an over the counter cough medicine with DM

added) twice a day and monitor the results. These kinds of things have made

a difference with Cameron in the past so I'm hoping it's what we need to

peel off another layer of his never ending onion of a problem.

As I look back for the last 8 years though, that onion is considerably

smaller...we've gone from an Outback blooming something to a little bit less

than medium sized one. I don't know about fees, but I've found Dr. 's

to be very affordable compared to many of the other treatments we've tried.

The meds for the most part are reasonable as well...but I pick up the

Valtrex in Mexico when I go home to Texas for summers.

I don't know if any of that can communicate to you, but I just wanted to let

you know you're not alone and I'm sure there are many more out there like

us...we just have our hands so full we are doing good to lurk little lone

post. That's why I'm so appreciative to people like Marcia and who

are constants and can help me see there is a future because right now I feel

like I'm clawing my way out of a well and my fingers are nubs.

>

> I am at the point where I have to come face-to-face with the fact that our

> son just might not get any better. Financially we are

drained...emotionally,

> well I don't even know if I have any emotions left. I came to grips with

the

> fact that was not being 'bad' because of bad parenting just this

year

> (I think..). I came to grips with it but it still hurts a lot when he

can't

> even be left alone without destroying things, making fun of other kids or

> just being hard to be around.

>

>

>

> Today I let him travel with my friend and her son in her van. It was a

> complete disaster. As soon as he got in the van he started picking at her

> son and then flinging her purse around the van. She said she had to pull

> over and speak to him several times. I can't put him into any group

> activities because he is too old to have me supervising for most of them

and

> he is too hyperactive and mean-spirited to the other kids for the leaders

to

> take him. We tried Beavers last year and I was the Beaver Leader so that I

> could keep my eye on him. I could not put him Cubs this year as I know he

> would be too disruptive to the class and they don't allow me supervise.

>

>

>

> It breaks my heart and I feel that it may be too late to help him. We have

> tried, and are trying, as best as we can. We can't afford to fly to

Dr.

> G and we aren't seeing a lot of change with while on milk-free, low

> sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as

he

> was when he was 2...not a lot has changed. I feel like he is missing out

on

> so much in his life. A child who could read at 2 and do chess at 4 but

can't

> be left alone for a minute because he might hurt another human being and

> grin about it while doing it. I am having a bad day but it isn't unlike

many

> others. I don't have my 'cry spot' anymore but that doesn't mean I would

> like to ball up and cry in one tonight.

>

>

>

>

[Guest guest]

Hi .

I read your email and definitely feel terrible for what you are going through. 

I think Dr. Goldberg would be against Kirkman products and just believes in a

kydodolphilus, tums, good multivitamin, and feosol only if indicated. 

Excessive vitamin use can be harmful.

 

The thing about our kids is that they sometimes like negative attention and this

becomes

very important to them.  (My son can be like that from time-to-time.) I try

to praise the positive and not comment too much when he tells me negative news

with a smile on this face.  Does your school offer you any home services? 

When my son was young I purchased a book by Shira Richman, A Parents Guide to

Behavior Analysis.  It sounds very technical, but it was mostly good advice

that could be used with any kid.

 

Are there any kids that he prefers where he wouldn't act that way towards?  Are

there any activities that he really enjoys and would not want to lose out? Is he

one of these kids that needs a certain amount of down-time before he

participates with peers?

 

I wish you the best of luck and please hang in there.  So sorry to hear how you

are feeling.

 

Lynn

From: and Freeman <freemanbk@...>

Subject: RE: I have to come to some type of resolution

Date: Tuesday, February 22, 2011, 9:38 AM

 

So I gave him his Trytan last night (just a small dose) and he was certainly

more alert and interactive and remembering better today. Later on in the

morning he started having meltdowns so I gave him vit c (Kirkman

hypoallergenic) and his b vits (AOR brand with very little non-medicinal

ingredients - they do not use magnesium stearate). He is doing better now. I

am going to hold off on the nystatin until he goes to bed and see if that

makes a difference in his day. Thank you all for the warm wishes. They keep

me going! PS - What is Dr. G's position on bi vitamins? Does he feel that

there could be a use for them in some kids?

From: [mailto: ] On Behalf Of Jerri

Gann

Sent: February-22-11 12:14 AM

Subject: Re: I have to come to some type of resolution

I don't know what to say except that I have been here many times, and

sometimes that is my only comfort knowing others are in the same boat.

I have been with Dr G for 9 years and I still believe it's better then

if I had not been but it is still hard. I just have had to jump away

from what the world expects, because it is not going to happen in my

house. I still have some friends and some family, not so much of a

support, because if it's not life or death situation in the worlds eyes

people don't see the need to help. I have experienced friends that have

kids with cancer or something else Cf...etc and everyone is there, full

on support, but not for me, it's been a shunning (for a lack of a better

word) no support, no help, no fund raisers, even though we needed them,

it's cost us a fortune. It's a mental disorder after all (not, that's

what others think) so we have always been on our own. We are doing the

best we can on our own, no help from family, government or other. It

sucks but I have two of the most gorgeous boys in the world and if no

one else sees that. Well, I won't cuss right now because this is not the

place. But the world needs to change and that's too big or a paradigm

for me or anyone else to change.

> I am at the point where I have to come face-to-face with the fact that our

> son just might not get any better. Financially we are

> drained...emotionally,

> well I don't even know if I have any emotions left. I came to grips

> with the

> fact that was not being 'bad' because of bad parenting just this

> year

> (I think..). I came to grips with it but it still hurts a lot when he

> can't

> even be left alone without destroying things, making fun of other kids or

> just being hard to be around.

>

> Today I let him travel with my friend and her son in her van. It was a

> complete disaster. As soon as he got in the van he started picking at her

> son and then flinging her purse around the van. She said she had to pull

> over and speak to him several times. I can't put him into any group

> activities because he is too old to have me supervising for most of

> them and

> he is too hyperactive and mean-spirited to the other kids for the

> leaders to

> take him. We tried Beavers last year and I was the Beaver Leader so that I

> could keep my eye on him. I could not put him Cubs this year as I know he

> would be too disruptive to the class and they don't allow me supervise.

>

> It breaks my heart and I feel that it may be too late to help him. We have

> tried, and are trying, as best as we can. We can't afford to fly

> to Dr.

> G and we aren't seeing a lot of change with while on milk-free, low

> sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited

> as he

> was when he was 2...not a lot has changed. I feel like he is missing

> out on

> so much in his life. A child who could read at 2 and do chess at 4 but

> can't

> be left alone for a minute because he might hurt another human being and

> grin about it while doing it. I am having a bad day but it isn't

> unlike many

> others. I don't have my 'cry spot' anymore but that doesn't mean I would

> like to ball up and cry in one tonight.

>

>

[Guest guest]

I think Dr. G often perscribes something for hyperness (is it Tenex?... maybe

someone else knows... could possibly be a help)... also even though Dr. G

doesn't really like this one our son had huge mood/coping improvements from Low

Dose Naltrexone.

[Guest guest]

Dr. g has a big problem with LDN... mostly I think because there are not any

studies showing long-term effect in children. He thinks it might be dangerous.

At least thats what he told me when I inquired about it.

And he does use Tenex for hyperness/concentration issues.

>

> I have LDN but want to stick to the protocol. Is this something Dr. G

> approves of?

>

>

>

> From: [mailto: ] On Behalf Of

> Pedersen

> Sent: February-23-11 2:09 AM

>

> Subject: Re: I have to come to some type of resolution

>

>

>

>

>

> I think Dr. G often perscribes something for hyperness (is it Tenex?...

> maybe someone else knows... could possibly be a help)... also even though

> Dr. G doesn't really like this one our son had huge mood/coping improvements

> from Low Dose Naltrexone.

>

>

[Guest guest]

He has wanted us to get rid of the LDN. Though because the difference for our

son was night and day, he has been willing to wait until we have SSRI up to full

dose to see if that takes the place of it. I would like to remove it, but if we

see immediate regression, it will be difficult.

So, long story short, no he doesn't like it... he feels that the effects are

unknown on a developing brain. He has been willing to let us continue it for

the time being, with the goal of removing it once SSRI's are doing the same

thing for his mood/tantrums.