Re: Additional procedures?

[Guest guest]

The Mayo Clinic (famous research hospital in MN) told

us don't go on fishing expediations, life is too short,

treat the symptoms.

I would only have the genetic test if your daughter has other

health issues. Does she have a known heart abnormality, short stature,

orthopedic issues. If so maybe she does have

a genetic issue like fragile X carrier.

When my daughter was 9 she slowed in growth and we knew

with her other health issues we should figure it out.

And the genetic test, gave it a name, but it didn't

change the treatment she was getting. In our case it

answered why there were many health issues.

Pam

>

> My dd was very recently diagnosed and now we're facing follow-up appointments

for genetic testing (lab work and MRI). The thing is, dd is terrified of all

medical procedures, and I'm not really big on having her be a " guinea pig " for

the research for the diagnostic center.

>

> The only reason for the testing (other than research purposes) that could be

given was to look for a certain mutation of a gene, which may indicate that she

MAY be at a higher risk for certain types of cancer as an adult (breast cancer,

ovarian, etc). When I asked if knowing she was at a higher risk would open up

avenues of prevention, of course the answer was no.

>

> Additionally, we've already gone to one of these appointments (which is 2

hours away and requires me to take dd out of school each time), only to find out

that the wrong order was given by this same doctor. He was supposed to have

ordered the procedures be done under sedation because of her anxiety, but failed

to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

>

> I am leaning towards not having the appointment rescheduled, regardless of

what the doctor thinks. Does anyone out there have any advice?

>

[Guest guest]

Thanks Pam, for the advice. Thankfully, she doesn't have any other health issues

like you mentioned. The only other thing that was noted by the developmental

ped. was that she had a large head. I think this is what is prompting him to

request the genetic testing, although I admit that a lot of the medical jargon

flew over my head a little. But no short stature, no heart issues and no

orthopedic issues. I honestly feel like it is exactly what you called it, a

fishing expedition.

> >

> > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> >

> > The only reason for the testing (other than research purposes) that could be

given was to look for a certain mutation of a gene, which may indicate that she

MAY be at a higher risk for certain types of cancer as an adult (breast cancer,

ovarian, etc). When I asked if knowing she was at a higher risk would open up

avenues of prevention, of course the answer was no.

> >

> > Additionally, we've already gone to one of these appointments (which is 2

hours away and requires me to take dd out of school each time), only to find out

that the wrong order was given by this same doctor. He was supposed to have

ordered the procedures be done under sedation because of her anxiety, but failed

to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> >

> > I am leaning towards not having the appointment rescheduled, regardless of

what the doctor thinks. Does anyone out there have any advice?

> >

>

[Guest guest]

Back when my son was very " medically involved " we met some great folks whose

daughter had been and continues to be very involved with the medical system.

They gave us the advice that if the results of a procedure/test etc. aren't

going to change the treatment they're receiving, then they don't bother with it.

It sounds like this might be the case with the tests you all are facing, so I

figured I'd share their advice.

Good luck.

Carolyn in Maine

> > >

> > > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> > >

> > > The only reason for the testing (other than research purposes) that could

be given was to look for a certain mutation of a gene, which may indicate that

she MAY be at a higher risk for certain types of cancer as an adult (breast

cancer, ovarian, etc). When I asked if knowing she was at a higher risk would

open up avenues of prevention, of course the answer was no.

> > >

> > > Additionally, we've already gone to one of these appointments (which is 2

hours away and requires me to take dd out of school each time), only to find out

that the wrong order was given by this same doctor. He was supposed to have

ordered the procedures be done under sedation because of her anxiety, but failed

to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> > >

> > > I am leaning towards not having the appointment rescheduled, regardless of

what the doctor thinks. Does anyone out there have any advice?

> > >

> >

>

[Guest guest]

I wouldn't I know when we wanted to see a nuerologist he wanted

a brain MRI. I waited until my daughter needed a hip MRI.

This invovled sedation etc. The brain MRI does not make

sense unless there are seizures, headaches some symptom.

Somtimes doctor's feel they have to offer tests to cover

a mal practice suit. I know my daughter's orthopedic orders

xrays yearly 7 years after her hip operation, when he

told me there was nothing he could do unless there was

pain, I stopped all the xrays, because it caused

such anxiety for my daughter.

We want to keep the medical professionals a positive

healing situation for our kids, there is a risk for

emotional issues if we do to much needless tests,

especially in the case of a very fragile emotional child

like many AS kids are.

Pam

-- In , " jonikkag " <jonikkag@...> wrote:

>

> Thanks Pam, for the advice. Thankfully, she doesn't have any other health

issues like you mentioned. The only other thing that was noted by the

developmental ped. was that she had a large head. I think this is what is

prompting him to request the genetic testing, although I admit that a lot of the

medical jargon flew over my head a little. But no short stature, no heart issues

and no orthopedic issues. I honestly feel like it is exactly what you called it,

a fishing expedition.

>

>

>

> > >

> > > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> > >

> > > The only reason for the testing (other than research purposes) that could

be given was to look for a certain mutation of a gene, which may indicate that

she MAY be at a higher risk for certain types of cancer as an adult (breast

cancer, ovarian, etc). When I asked if knowing she was at a higher risk would

open up avenues of prevention, of course the answer was no.

> > >

> > > Additionally, we've already gone to one of these appointments (which is 2

hours away and requires me to take dd out of school each time), only to find out

that the wrong order was given by this same doctor. He was supposed to have

ordered the procedures be done under sedation because of her anxiety, but failed

to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> > >

> > > I am leaning towards not having the appointment rescheduled, regardless of

what the doctor thinks. Does anyone out there have any advice?

> > >

> >

>

[Guest guest]

I couldn't agree more. Just last week a new neurologist was requesting lab work "just to rule everything else out" to look for any chromosome abnormality blah, blah, blah - he even said he didn't think he would find anything. At the time I went along with it and the lab was in the same building so it would be easier, less time to think about it. I wasn't sure how my son would handle it. I knew he would stress about it and cry etc. but with the incentive of that new skateboard he's been wanting, I thought he'd pull through okay. Well, I was wrong. Very wrong. And I think the whole experience traumatized me almost as much as it did him!!

The male technician, at the very first hint of my son's hesitation, started being very scary-mean. He said "we can do this the hard way or the easy way", soon my son was under the chair and the tech called another male tech and they were each pulling - no, wait - YANKING my son's legs to get him out. He was screaming and scared to death by the way these idiots were handling it. I was shouting for them to stop -everyone needs to calm down for a minute! They were like, ma'am we can handle this. I said no, your not handling it this way. They were going to strap him down on the table, it was crazy and all happening so fast. Finally, the lab supervisor who heard all the screaming came in and told those 2 to leave. She spoke softly, talked to my son, explained how everything worked, gained his trust to try. It took about 45 minutes for her to get to that point but he let her try while in my lap and I had to talk to him about stuff to distract his mind. Well unfortunately they couldn't find the vain, he started screaming again and she suggested we try a different day with a sedative.

After having more time to think about it we decided the blood work isn't necessary at this time. He's not having any issues, the Dr. was just doing busy work Dr. stuff, ordering tests or prescribing meds. We'll wait, maybe it will be necessary down the line.

Do you guys have scary lab stories to share also? Are most Aspies hyper sensitive and anxious about pain, more so that NT kids?

( ) Re: Additional procedures?

I wouldn't I know when we wanted to see a nuerologist he wanteda brain MRI. I waited until my daughter needed a hip MRI.This invovled sedation etc. The brain MRI does not make sense unless there are seizures, headaches some symptom.Somtimes doctor's feel they have to offer tests to covera mal practice suit. I know my daughter's orthopedic ordersxrays yearly 7 years after her hip operation, when hetold me there was nothing he could do unless there waspain, I stopped all the xrays, because it causedsuch anxiety for my daughter. We want to keep the medical professionals a positivehealing situation for our kids, there is a risk foremotional issues if we do to much needless tests,especially in the case of a very fragile emotional childlike many AS kids are.Pam -- In , "jonikkag" <jonikkag@...> wrote:>> Thanks Pam, for the advice. Thankfully, she doesn't have any other health issues like you mentioned. The only other thing that was noted by the developmental ped. was that she had a large head. I think this is what is prompting him to request the genetic testing, although I admit that a lot of the medical jargon flew over my head a little. But no short stature, no heart issues and no orthopedic issues. I honestly feel like it is exactly what you called it, a fishing expedition. > > > > > >> > > My dd was very recently diagnosed and now we're facing follow-up appointments for genetic testing (lab work and MRI). The thing is, dd is terrified of all medical procedures, and I'm not really big on having her be a "guinea pig" for the research for the diagnostic center. > > > > > > The only reason for the testing (other than research purposes) that could be given was to look for a certain mutation of a gene, which may indicate that she MAY be at a higher risk for certain types of cancer as an adult (breast cancer, ovarian, etc). When I asked if knowing she was at a higher risk would open up avenues of prevention, of course the answer was no. > > > > > > Additionally, we've already gone to one of these appointments (which is 2 hours away and requires me to take dd out of school each time), only to find out that the wrong order was given by this same doctor. He was supposed to have ordered the procedures be done under sedation because of her anxiety, but failed to do so. In fact, it was scheduled so late in the day that the sedation department had closed, and dd refused to allow the procedure to be done. In other words, it was a wasted trip. > > > > > > I am leaning towards not having the appointment rescheduled, regardless of what the doctor thinks. Does anyone out there have any advice?> > >> >>

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[Guest guest]

Thanks to everyone for the advice. I'm so new at this and often feel like I'm

navigating alone. It's so easy to let the doctor's judgment replace my own since

I don't know what I should be doing and should not be doing. But I instinctively

didn't want these tests done, since no one could satisfactorily explain the

reason for them and it puts so much undue stress on dd.

> > > >

> > > > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> > > >

> > > > The only reason for the testing (other than research purposes) that

could be given was to look for a certain mutation of a gene, which may indicate

that she MAY be at a higher risk for certain types of cancer as an adult (breast

cancer, ovarian, etc). When I asked if knowing she was at a higher risk would

open up avenues of prevention, of course the answer was no.

> > > >

> > > > Additionally, we've already gone to one of these appointments (which is

2 hours away and requires me to take dd out of school each time), only to find

out that the wrong order was given by this same doctor. He was supposed to have

ordered the procedures be done under sedation because of her anxiety, but failed

to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> > > >

> > > > I am leaning towards not having the appointment rescheduled, regardless

of what the doctor thinks. Does anyone out there have any advice?

> > > >

> > >

> >

>

[Guest guest]

Val, that's horrible! I'm so sorry you and your son had to go through that.

That's exactly the type of scene I envision with dd and want to avoid.

I remember when she was bitten by a spider a couple of summers ago. Her ankle

was swollen about 3X the normal size, so we had to take her to the ER. Well,

blood work had to be done in that instance, but it was so traumatic for her and

she cried so hard. My mother, myself and one nurse had to basically distract her

and hold her down while another nurse drew the blood. I think I may have cried

almost as hard as she did, but it had to be done so they would know what meds to

give her to reduce the swelling.

DD is extremely anxious about anything she thinks may cause her physical pain.

She's already pretty apprehensive about doctors/dentists in general (she walks

into her dentist's office and calmly announces each time that she is not having

her teeth x-rayed...and doesn't!) and all these tests have worsened her fears. I

assume that is a part of her AS.

> > > >

> > > > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> > > >

> > > > The only reason for the testing (other than research purposes) that

could be given was to look for a certain mutation of a gene, which may indicate

that she MAY be at a higher risk for certain types of cancer as an adult (breast

cancer, ovarian, etc). When I asked if knowing she was at a higher risk would

open up avenues of prevention, of course the answer was no.

> > > >

> > > > Additionally, we've already gone to one of these appointments (which

is 2 hours away and requires me to take dd out of school each time), only to

find out that the wrong order was given by this same doctor. He was supposed to

have ordered the procedures be done under sedation because of her anxiety, but

failed to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> > > >

> > > > I am leaning towards not having the appointment rescheduled,

regardless of what the doctor thinks. Does anyone out there have any advice?

> > > >

> > >

> >

>

>

>

>

>

>

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>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.449 / Virus Database: 271.1.1/3556 - Release Date: 04/06/11

18:35:00

>

[Guest guest]

I have too many. But what I do now is this. I call the office.

I tell them about my daughter and ask for a very

supportive staff person. I drive them crazy asking what the

procedures are so I can rehearse them with my daughter.

I warn the staff if they can't help her stay calm tell me

and I will find another office (this gets their attention I would say).

You can not go to a doctor " COLD " meaning without talking to them

about your child. I would say he has autism, he is oppostional,

he needs supportive calming staff ....it would be unethical

for the medical profession to refuse treatment ot tests.

I have blood work down no more than once a year, I try to

combine what is down in one visit.

I tell the office staff Dr. X was not supportive, she was yelling

who else would be supportive, that gets attention too.

You tell them, we want medical visits to be positive. We

want to shape cooperative behavior and we need your help to

do so.

It took me years to prefect my process. I think with the help

of therapists teaching me how to advocate I get the help

I need.

At hosptials if your child is staying overnight you can

ask for a social worker to meet you and your child and

help them cope with the hospital stay. I did this a

Children's in Phili for a MRI. My daughter had

a social worker with through the whole sedation process

to gain her cooperation.

We have been through a lot. My daughter has many health issues.

Cardio check, orthopedic checks, endo checks.

Pam

hstfor Do u

> > > >

> > > > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> > > >

> > > > The only reason for the testing (other than research purposes) that

could be given was to look for a certain mutation of a gene, which may indicate

that she MAY be at a higher risk for certain types of cancer as an adult (breast

cancer, ovarian, etc). When I asked if knowing she was at a higher risk would

open up avenues of prevention, of course the answer was no.

> > > >

> > > > Additionally, we've already gone to one of these appointments (which

is 2 hours away and requires me to take dd out of school each time), only to

find out that the wrong order was given by this same doctor. He was supposed to

have ordered the procedures be done under sedation because of her anxiety, but

failed to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> > > >

> > > > I am leaning towards not having the appointment rescheduled,

regardless of what the doctor thinks. Does anyone out there have any advice?

> > > >

> > >

> >

>

>

>

>

>

>

> ------------------------------------------------------------------------------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.449 / Virus Database: 271.1.1/3556 - Release Date: 04/06/11

18:35:00

>

[Guest guest]

Yes I think so, it is anxiety for sure and the setting is

so different.

Even getting my daughter to take medication for anxiety was

an ordeal.

Everything we go is gradual exposure ...like what is used for

OCD patients that have fears ....gradual and rehearsed.

Pam

> > > > >

> > > > > My dd was very recently diagnosed and now we're facing follow-up

appointments for genetic testing (lab work and MRI). The thing is, dd is

terrified of all medical procedures, and I'm not really big on having her be a

" guinea pig " for the research for the diagnostic center.

> > > > >

> > > > > The only reason for the testing (other than research purposes) that

could be given was to look for a certain mutation of a gene, which may indicate

that she MAY be at a higher risk for certain types of cancer as an adult (breast

cancer, ovarian, etc). When I asked if knowing she was at a higher risk would

open up avenues of prevention, of course the answer was no.

> > > > >

> > > > > Additionally, we've already gone to one of these appointments (which

is 2 hours away and requires me to take dd out of school each time), only to

find out that the wrong order was given by this same doctor. He was supposed to

have ordered the procedures be done under sedation because of her anxiety, but

failed to do so. In fact, it was scheduled so late in the day that the sedation

department had closed, and dd refused to allow the procedure to be done. In

other words, it was a wasted trip.

> > > > >

> > > > > I am leaning towards not having the appointment rescheduled,

regardless of what the doctor thinks. Does anyone out there have any advice?

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

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> >

> >

> >

> > No virus found in this incoming message.

> > Checked by AVG - www.avg.com

> > Version: 8.5.449 / Virus Database: 271.1.1/3556 - Release Date: 04/06/11

18:35:00

> >

>

[Guest guest]

I have success in some procedures with my asperger's/mood disordered son (he's now 11). When he was 9 he finally refused to let the dentist work on his mouth. (He'd been getting less compliant for several checkups before that). So he asked to do the sedation dentist thing. I started thinking fast. I knew it would cost alot and be a pain, and I also know my son LOVES nerf guns.

So I told a white lie and said, this doctor will need to see you and look in your mouth so he can recommend the right sedation dentist; we'll have to come back for that. So this dentist schedules autistic kids BEFORE they open (if necessary) so we returned one morning before school. I also told school we probably would not be in until after lunch.

So he first took one of his valiums at home. Then we showed up and before we got out of the car, I showed him the nerf gun in the box. I told him if he let this dentist today check his teeth the normal way, he could have the nerf gun (it was huge; i got it at a discount store for $10). I said, "Everytime you get overwhelmed, you can ask them to stop for a minute. But keep going. Think of the NERF! Everytime you want to quit, think of the NERF!" you can have it immediately after we get back to the car.

And he got through the visit!! The next time, we used valium and I offered $10 to spend immediately at Walmart. That got him through. The next time we did not use valium and I offered $10 at Walmart. The next time I did not use valium and I did not offer any incentive and he got through. So eventually I worked him OUT of the motivational stuff and he's just doing it.

As far as blood draws go, he recently needed three blood draws over a month. The first one, even with the pediatrician speaking to the clinic techs, went horribly awry. They kept lying to him, so I kept correcting them in front of my son. "No, you are not just going to put the rubber band on and 'look at his arm.' You'll put the band on and then you'll doing the blood draw. And that's OK. We talked about that."

"No, it WILL hurt, and that's OK! We talked about that. We'll doing the breathing exercises (imagine blowing a feather or pinwheel HARD while the needle is going in) and it will work out."

So the next time we went to the hospital, they used anesthetizing cream, which took an hour to work so we had to wait, luckily we brought books. The tech was wonderful, they used the TINIEST needle with a butterfly stabilizer on it, and my son said surprised when she was done, "I AM SUCH A WIMP!" because he was so anxious beforehand. The next time we had bought own cream ahead of time (rx from pediatrician, cost $4 w/insurance), put it on an hour before we left, and were ready for the little needle and it was no problem. He still wanted me to hide his face and talk him through the breathing but it wasn't much of a deal at all.

So there is hope! Good luck everyone

Geneva