Re: Aggravation and answered prayer?

July 21, 2004

UGH, Kim,

too many things to worry about!!

I wish I could offer something more. It sounds like you have already exhaused

the search for a ped. psych and neuro. Hard to believe that there is nothing

available--I am so sorry. Hopefully the Handle thing will help and give you

(and Dylan) something to start with.

If our consulting psychiarist is on campus before Friday (our last day for the

summer) I will ask him if he knows anyone in Arizona. If you don't get anything

from me by Friday, it means I did not see him.

pam

July 21, 2004

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

July 21, 2004

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

>

July 21, 2004

Ann,

He sees Judith on the 27th of August. I'll let you watch his assessment

video at some point if you want, so you can be a fly on the wall that way.

As much as I believe Judith can help with his ongoing issues, the other part

of me still thinks he had a PANDAS type of reaction. I read one abstract

where four of the cases had exposure to strep, which Dylan did. I want his

antibody test repeated in a month. He had every symptom of PANDAS the

sudden onset, the excessive nature of the tic like movements, the incessant

additional motor activity, the exposure to strep, but the antibody level was

not high enough for it to be PANDAS.

Kim

Then it is so amazing how the CST can still help his nervous system calm

down, no matter the cause.

> 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

>>

July 21, 2004