Re: Aggravation and answered prayer?

[Guest guest]

Hi Kim,

I am so sorry that you have been met with such aggravation. I am wondering,

however, if they are suggesting that Dylan see a psychiatrist because a

psychiatrist can diagnose tics and can prescribe/describe meds and/or other

treatments? I wonder if the response was " shortcut " description because you are

so knowledgeable and they figured you would understand what they meant by that?

Not sure, but my stab in the dark based on our kids here at school who have

similar issues and the consulting psychiatrist is where we start. Hope this

helps.

Pam

[Guest guest]

Pam,

That is a possibility. I wish there were a psychiatrist here who I felt had

a prayer of understanding Dylan. They have a hard enough time understanding

my 16yo with pretty straight forward Inattentive ADD. I have searched on

line and have not found a pediatric neuropsychiatrist or neuropsychologist

in AZ.

The neurologist thinks Dylan has autism and we need the psychiatrist for

that. Considering the pediatrician thinks they were seizures, not tics, it

is upsetting that the neurologist is not looking at it further.

All I know is that Dylan is going to have a hard time functioning in his

classroom if something doesn't shift. I can just imagine the teacher's

response to his hitting and then laughing, throwing things, the excessive

movement and all those things that showed up after the involuntary muscle

movements stopped.

Fortunately his Intervener understands him and has seen all of these changes

this summer and she is quite certain that Dylan was not in control of the

atypical arm movements, and knows he needs a quiet place to be wild and calm

back down when he starts the hitting or throwing. We'll hope the teacher

listens to her. She is coming with to our Handle appt to learn the

exercises with me.

Kim L

> Hi Kim,

> I am so sorry that you have been met with such aggravation. I am wondering,

> however, if they are suggesting that Dylan see a psychiatrist because a

> psychiatrist can diagnose tics and can prescribe/describe meds and/or other

> treatments? I wonder if the response was " shortcut " description because you

> are so knowledgeable and they figured you would understand what they meant by

> that? Not sure, but my stab in the dark based on our kids here at school who

> have similar issues and the consulting psychiatrist is where we start. Hope

> this helps.

>

> Pam

>

>

>

[Guest guest]

Kim-

This is how I'm feeling about the delays in Aubrie's surgery date --

aggravation and answered prayers. Now her dental cleaning at Children's

had to be canceled so I think I'll go ahead and set her up at our local

dentist. How hard can it be to clean a kid's teeth in a body cast? I

can hold her head and arms. So maybe this was the push we needed to get

going to the regular dentist for cleanings.

Anyway- it is weird how things happen and fall into place -- good and

bad. It's exciting that you'll be seeing Judith and I really look

forward to hearing what you learn and how, and if, it helps Dylan.

Until then, good luck waiting the next month as his " behaviors " continue

with no help from the drs. Frustrating does even come close to the

right word, does it?

Michele W

[Guest guest]

Kim-

This is how I'm feeling about the delays in Aubrie's surgery date --

aggravation and answered prayers. Now her dental cleaning at Children's

had to be canceled so I think I'll go ahead and set her up at our local

dentist. How hard can it be to clean a kid's teeth in a body cast? I

can hold her head and arms. So maybe this was the push we needed to get

going to the regular dentist for cleanings.

Anyway- it is weird how things happen and fall into place -- good and

bad. It's exciting that you'll be seeing Judith and I really look

forward to hearing what you learn and how, and if, it helps Dylan.

Until then, good luck waiting the next month as his " behaviors " continue

with no help from the drs. Frustrating does even come close to the

right word, does it?

Michele W

[Guest guest]

Kim-

This is how I'm feeling about the delays in Aubrie's surgery date --

aggravation and answered prayers. Now her dental cleaning at Children's

had to be canceled so I think I'll go ahead and set her up at our local

dentist. How hard can it be to clean a kid's teeth in a body cast? I

can hold her head and arms. So maybe this was the push we needed to get

going to the regular dentist for cleanings.

Anyway- it is weird how things happen and fall into place -- good and

bad. It's exciting that you'll be seeing Judith and I really look

forward to hearing what you learn and how, and if, it helps Dylan.

Until then, good luck waiting the next month as his " behaviors " continue

with no help from the drs. Frustrating does even come close to the

right word, does it?

Michele W

[Guest guest]

Kim said:

> She is coming with to our Handle appt to learn the

> exercises with me.

>

And somebody has the gall to say that aides are not useful and

important!!!!! What a gem!

Michele W

Aubrie's mom

[Guest guest]

Kim said:

> She is coming with to our Handle appt to learn the

> exercises with me.

>

And somebody has the gall to say that aides are not useful and

important!!!!! What a gem!

Michele W

Aubrie's mom

[Guest guest]

Kim said:

> She is coming with to our Handle appt to learn the

> exercises with me.

>

And somebody has the gall to say that aides are not useful and

important!!!!! What a gem!

Michele W

Aubrie's mom

[Guest guest]

Michele,

We see a dentist that specializes in kids with special needs and he is

AWESOME. I am always amazed at how Dylan just goes in climbs in the chair,

holds his mouth open and lets him do the exam, cleaning and polishing. All

in about 5 minutes and we are out of there.

Trying to look at his tonsils in a doctor's office is another story. I

guess they need a chair that goes back and a bright light to look at to

distract him. Really it is more than that though, it is just the calm

attitude of the dentist, where he expects the kids to be able to participate

and they do.

On the other issue, you are right, frustrating does not even begin to

describe it.

Kim

> Kim-

> This is how I'm feeling about the delays in Aubrie's surgery date --

> aggravation and answered prayers. Now her dental cleaning at Children's

> had to be canceled so I think I'll go ahead and set her up at our local

> dentist. How hard can it be to clean a kid's teeth in a body cast? I

> can hold her head and arms. So maybe this was the push we needed to get

> going to the regular dentist for cleanings.

>

> Anyway- it is weird how things happen and fall into place -- good and

> bad. It's exciting that you'll be seeing Judith and I really look

> forward to hearing what you learn and how, and if, it helps Dylan.

> Until then, good luck waiting the next month as his " behaviors " continue

> with no help from the drs. Frustrating does even come close to the

> right word, does it?

>

> Michele W

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

We see a dentist that specializes in kids with special needs and he is

AWESOME. I am always amazed at how Dylan just goes in climbs in the chair,

holds his mouth open and lets him do the exam, cleaning and polishing. All

in about 5 minutes and we are out of there.

Trying to look at his tonsils in a doctor's office is another story. I

guess they need a chair that goes back and a bright light to look at to

distract him. Really it is more than that though, it is just the calm

attitude of the dentist, where he expects the kids to be able to participate

and they do.

On the other issue, you are right, frustrating does not even begin to

describe it.

Kim

> Kim-

> This is how I'm feeling about the delays in Aubrie's surgery date --

> aggravation and answered prayers. Now her dental cleaning at Children's

> had to be canceled so I think I'll go ahead and set her up at our local

> dentist. How hard can it be to clean a kid's teeth in a body cast? I

> can hold her head and arms. So maybe this was the push we needed to get

> going to the regular dentist for cleanings.

>

> Anyway- it is weird how things happen and fall into place -- good and

> bad. It's exciting that you'll be seeing Judith and I really look

> forward to hearing what you learn and how, and if, it helps Dylan.

> Until then, good luck waiting the next month as his " behaviors " continue

> with no help from the drs. Frustrating does even come close to the

> right word, does it?

>

> Michele W

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

We see a dentist that specializes in kids with special needs and he is

AWESOME. I am always amazed at how Dylan just goes in climbs in the chair,

holds his mouth open and lets him do the exam, cleaning and polishing. All

in about 5 minutes and we are out of there.

Trying to look at his tonsils in a doctor's office is another story. I

guess they need a chair that goes back and a bright light to look at to

distract him. Really it is more than that though, it is just the calm

attitude of the dentist, where he expects the kids to be able to participate

and they do.

On the other issue, you are right, frustrating does not even begin to

describe it.

Kim

> Kim-

> This is how I'm feeling about the delays in Aubrie's surgery date --

> aggravation and answered prayers. Now her dental cleaning at Children's

> had to be canceled so I think I'll go ahead and set her up at our local

> dentist. How hard can it be to clean a kid's teeth in a body cast? I

> can hold her head and arms. So maybe this was the push we needed to get

> going to the regular dentist for cleanings.

>

> Anyway- it is weird how things happen and fall into place -- good and

> bad. It's exciting that you'll be seeing Judith and I really look

> forward to hearing what you learn and how, and if, it helps Dylan.

> Until then, good luck waiting the next month as his " behaviors " continue

> with no help from the drs. Frustrating does even come close to the

> right word, does it?

>

> Michele W

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Gem is an understatement. Roy calls her Saint Doe. Kim

> Kim said:

>

>> She is coming with to our Handle appt to learn the

>> exercises with me.

>>

> And somebody has the gall to say that aides are not useful and

> important!!!!! What a gem!

>

> Michele W

> Aubrie's mom

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Gem is an understatement. Roy calls her Saint Doe. Kim

> Kim said:

>

>> She is coming with to our Handle appt to learn the

>> exercises with me.

>>

> And somebody has the gall to say that aides are not useful and

> important!!!!! What a gem!

>

> Michele W

> Aubrie's mom

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Gem is an understatement. Roy calls her Saint Doe. Kim

> Kim said:

>

>> She is coming with to our Handle appt to learn the

>> exercises with me.

>>

> And somebody has the gall to say that aides are not useful and

> important!!!!! What a gem!

>

> Michele W

> Aubrie's mom

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

sorry you have to go through all this, but glad it's all working in the end.

maria

Aggravation and answered prayer?

The nightmare of Dylan¹s medical care when he developed all of the seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a half

with a child who neurologically could not be still) misread the requisition

and only ran one of the three tests ordered. No wonder I have not been able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one of

my other kids started this every one would have been doing back flips trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

[Guest guest]

sorry you have to go through all this, but glad it's all working in the end.

maria

Aggravation and answered prayer?

The nightmare of Dylan¹s medical care when he developed all of the seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a half

with a child who neurologically could not be still) misread the requisition

and only ran one of the three tests ordered. No wonder I have not been able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one of

my other kids started this every one would have been doing back flips trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

[Guest guest]

sorry you have to go through all this, but glad it's all working in the end.

maria

Aggravation and answered prayer?

The nightmare of Dylan¹s medical care when he developed all of the seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a half

with a child who neurologically could not be still) misread the requisition

and only ran one of the three tests ordered. No wonder I have not been able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one of

my other kids started this every one would have been doing back flips trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

[Guest guest]

Kim,

Sorry to hear about the aggravation with the doctor/lab/etc, I can certainly

relate to that. Glad you're going to see Judith, she's wonderful!

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Aggravation and answered prayer?

The nightmare of Dylan¹s medical care when he developed all of the

seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a

half

with a child who neurologically could not be still) misread the

requisition

and only ran one of the three tests ordered. No wonder I have not been

able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on

the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one

of

my other kids started this every one would have been doing back flips

trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the

doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It

is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different

going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc

in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

[Guest guest]

Kim,

Sorry to hear about the aggravation with the doctor/lab/etc, I can certainly

relate to that. Glad you're going to see Judith, she's wonderful!

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Aggravation and answered prayer?

The nightmare of Dylan¹s medical care when he developed all of the

seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a

half

with a child who neurologically could not be still) misread the

requisition

and only ran one of the three tests ordered. No wonder I have not been

able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on

the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one

of

my other kids started this every one would have been doing back flips

trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the

doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It

is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different

going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc

in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

[Guest guest]

Kim,

Sorry to hear about the aggravation with the doctor/lab/etc, I can certainly

relate to that. Glad you're going to see Judith, she's wonderful!

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Aggravation and answered prayer?

The nightmare of Dylan¹s medical care when he developed all of the

seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a

half

with a child who neurologically could not be still) misread the

requisition

and only ran one of the three tests ordered. No wonder I have not been

able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on

the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one

of

my other kids started this every one would have been doing back flips

trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the

doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It

is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different

going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc

in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

[Guest guest]

I have watched Judith work, I would love to be the " fly on the wall "

to be able to see what kind of answers or therapy she finds. When will

this take place, do you need to travel to her? All the best.

Ann Gloyn

Specialist Teacher

Canada

> The nightmare of Dylan¹s medical care when he developed all of the

seizures

> or tics continues.

> Now we find out that the lab (the one where we waited for an hour

and a half

> with a child who neurologically could not be still) misread the

requisition

> and only ran one of the three tests ordered. No wonder I have not

been able

> to track down the results.

>

> I then informed the neurologist¹s nurse all that has happened in the

last

> few weeks since these involuntary muscle movements began. She

passed on the

> message to the doc and today my answer was, ³No need to redo the

labs, and

> as far as the behaviors he needs to go see a psychiatrist.² I am

furious,

> Dylan definitely has his mannerisms, but what he experienced in that

week

> was not a behavior. It was so clearly an involuntary movement if anyone

> would bother to look instead of just assuming it was a behavior. If

one of

> my other kids started this every one would have been doing back

flips trying

> to figure out what was going on.

>

> On the plus side, when all of this happened in the prayer I sent to my

> church I asked prayers for guidance on where to find answers. Since

that

> time every single piece has easily fallen into place for Dylan to go see

> Judith Bluestone with Handle Institute; appt with Judith, funding,

travel,

> and even the conflicting eye doctor¹s appt being rescheduled by the

doctor,

> not by me. I have to trust that is where he needs to go now, especially

> since it is so opposite of the horrible medical care he has

received. It is

> not as if I expect her to magically make him function like my other

kids,

> but I do believe she can stabilize his nervous system, so he doesn¹t

have

> such dramatic changes in state and function. The pediatrician is

the only

> one who has responded as if he believed there was something

different going

> on, unfortunately he sent us to the ER, where they dismissed us, so

he did

> not get to see them. I am also sure that if he had not seen his CST

doc in

> the midst of this, he would still be just as out of control.

>

> His appt is Aug. 26th, I can hardly wait.

>

> Kim L

> Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

>

>

>

[Guest guest]

I have watched Judith work, I would love to be the " fly on the wall "

to be able to see what kind of answers or therapy she finds. When will

this take place, do you need to travel to her? All the best.

Ann Gloyn

Specialist Teacher

Canada

> The nightmare of Dylan¹s medical care when he developed all of the

seizures

> or tics continues.

> Now we find out that the lab (the one where we waited for an hour

and a half

> with a child who neurologically could not be still) misread the

requisition

> and only ran one of the three tests ordered. No wonder I have not

been able

> to track down the results.

>

> I then informed the neurologist¹s nurse all that has happened in the

last

> few weeks since these involuntary muscle movements began. She

passed on the

> message to the doc and today my answer was, ³No need to redo the

labs, and

> as far as the behaviors he needs to go see a psychiatrist.² I am

furious,

> Dylan definitely has his mannerisms, but what he experienced in that

week

> was not a behavior. It was so clearly an involuntary movement if anyone

> would bother to look instead of just assuming it was a behavior. If

one of

> my other kids started this every one would have been doing back

flips trying

> to figure out what was going on.

>

> On the plus side, when all of this happened in the prayer I sent to my

> church I asked prayers for guidance on where to find answers. Since

that

> time every single piece has easily fallen into place for Dylan to go see

> Judith Bluestone with Handle Institute; appt with Judith, funding,

travel,

> and even the conflicting eye doctor¹s appt being rescheduled by the

doctor,

> not by me. I have to trust that is where he needs to go now, especially

> since it is so opposite of the horrible medical care he has

received. It is

> not as if I expect her to magically make him function like my other

kids,

> but I do believe she can stabilize his nervous system, so he doesn¹t

have

> such dramatic changes in state and function. The pediatrician is

the only

> one who has responded as if he believed there was something

different going

> on, unfortunately he sent us to the ER, where they dismissed us, so

he did

> not get to see them. I am also sure that if he had not seen his CST

doc in

> the midst of this, he would still be just as out of control.

>

> His appt is Aug. 26th, I can hardly wait.

>

> Kim L

> Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

>

>

>

[Guest guest]

Ann,

And yes we have to travel to see her. She is from Seattle, but we will be

seeing her at one of her centers in the San Francisco area.

Kim

> I have watched Judith work, I would love to be the " fly on the wall "

> to be able to see what kind of answers or therapy she finds. When will

> this take place, do you need to travel to her? All the best.

> Ann Gloyn

> Specialist Teacher

> Canada

>

>

>> The nightmare of Dylan¹s medical care when he developed all of the

> seizures

>> or tics continues.

>> Now we find out that the lab (the one where we waited for an hour

> and a half

>> with a child who neurologically could not be still) misread the

> requisition

>> and only ran one of the three tests ordered. No wonder I have not

> been able

>> to track down the results.

>>

>> I then informed the neurologist¹s nurse all that has happened in the

> last

>> few weeks since these involuntary muscle movements began. She

> passed on the

>> message to the doc and today my answer was, ³No need to redo the

> labs, and

>> as far as the behaviors he needs to go see a psychiatrist.² I am

> furious,

>> Dylan definitely has his mannerisms, but what he experienced in that

> week

>> was not a behavior. It was so clearly an involuntary movement if anyone

>> would bother to look instead of just assuming it was a behavior. If

> one of

>> my other kids started this every one would have been doing back

> flips trying

>> to figure out what was going on.

>>

>> On the plus side, when all of this happened in the prayer I sent to my

>> church I asked prayers for guidance on where to find answers. Since

> that

>> time every single piece has easily fallen into place for Dylan to go see

>> Judith Bluestone with Handle Institute; appt with Judith, funding,

> travel,

>> and even the conflicting eye doctor¹s appt being rescheduled by the

> doctor,

>> not by me. I have to trust that is where he needs to go now, especially

>> since it is so opposite of the horrible medical care he has

> received. It is

>> not as if I expect her to magically make him function like my other

> kids,

>> but I do believe she can stabilize his nervous system, so he doesn¹t

> have

>> such dramatic changes in state and function. The pediatrician is

> the only

>> one who has responded as if he believed there was something

> different going

>> on, unfortunately he sent us to the ER, where they dismissed us, so

> he did

>> not get to see them. I am also sure that if he had not seen his CST

> doc in

>> the midst of this, he would still be just as out of control.

>>

>> His appt is Aug. 26th, I can hardly wait.

>>

>> Kim L

>> Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

>>

>>

>>

[Guest guest]

Ann,

And yes we have to travel to see her. She is from Seattle, but we will be

seeing her at one of her centers in the San Francisco area.

Kim

> I have watched Judith work, I would love to be the " fly on the wall "

> to be able to see what kind of answers or therapy she finds. When will

> this take place, do you need to travel to her? All the best.

> Ann Gloyn

> Specialist Teacher

> Canada

>

>

>> The nightmare of Dylan¹s medical care when he developed all of the

> seizures

>> or tics continues.

>> Now we find out that the lab (the one where we waited for an hour

> and a half

>> with a child who neurologically could not be still) misread the

> requisition

>> and only ran one of the three tests ordered. No wonder I have not

> been able

>> to track down the results.

>>

>> I then informed the neurologist¹s nurse all that has happened in the

> last

>> few weeks since these involuntary muscle movements began. She

> passed on the

>> message to the doc and today my answer was, ³No need to redo the

> labs, and

>> as far as the behaviors he needs to go see a psychiatrist.² I am

> furious,

>> Dylan definitely has his mannerisms, but what he experienced in that

> week

>> was not a behavior. It was so clearly an involuntary movement if anyone

>> would bother to look instead of just assuming it was a behavior. If

> one of

>> my other kids started this every one would have been doing back

> flips trying

>> to figure out what was going on.

>>

>> On the plus side, when all of this happened in the prayer I sent to my

>> church I asked prayers for guidance on where to find answers. Since

> that

>> time every single piece has easily fallen into place for Dylan to go see

>> Judith Bluestone with Handle Institute; appt with Judith, funding,

> travel,

>> and even the conflicting eye doctor¹s appt being rescheduled by the

> doctor,

>> not by me. I have to trust that is where he needs to go now, especially

>> since it is so opposite of the horrible medical care he has

> received. It is

>> not as if I expect her to magically make him function like my other

> kids,

>> but I do believe she can stabilize his nervous system, so he doesn¹t

> have

>> such dramatic changes in state and function. The pediatrician is

> the only

>> one who has responded as if he believed there was something

> different going

>> on, unfortunately he sent us to the ER, where they dismissed us, so

> he did

>> not get to see them. I am also sure that if he had not seen his CST

> doc in

>> the midst of this, he would still be just as out of control.

>>

>> His appt is Aug. 26th, I can hardly wait.

>>

>> Kim L

>> Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

>>

>>

>>

[Guest guest]

This dentist is amazing. Even with CST I play hand games with Dylan to keep

him from grabbing the doctor's hands. At the dentist I don't do anything.

He just quickly does his thing and Dylan lets him.

Kim

> Kim-

> I'm not real thrilled with Aubrie's ped dentist. The only thing special

> about him is his skill in cleaning quickly while a kid is held down. I

> wouldn't look forward to that either if I were a kid. I understand the

> job needs to be done, but I think he could do a better job of trying.

> So I'm really looking forward to working with someone else. The only

> thing we need the specialist for his her dental issues-- missing teeth,

> microtooth, etc. But we can go back there or elsewhere when the time comes.

>

> Michele W

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>