Stressed out about Doctors appointment

May 12, 2006

Hello all,

I just wanted to vent a little about my sons doctors appointment

yesterday. I had to take him back for his six month checkup at the

Genetisit. We had been refired to her last fall by the neurologist

and had some genetic testing done. It came back that my son has

translocated first and seventh cromosomes. Anyway, following that

appointment we had gotten a dx of aspergers from both her and the

Neurologist. At yesterdays appointment she ask me would you like to

know for sure that your son has aspergers? I was extreamly put off

by this question because I thought that I already knew. She went on

further to say that my son is large for his age and that she wanted

to do a bone x-ray. Next she told me that she thought that my son

being large could contribute to asperger like symptoms. Now we have

to take him to a Neuropsychologist to confirm his dx. I feel like I

am back to square one. My son also has sleeping problems and she

felt that a sleep study would be helpful. Not to mention she sent

him for blood work yesterday and had him tested for allergies. What

about play therapy? Has anyone else had any experiance with getting

someone who is experianced in play therapy? Any feedback on all of

these issues would be great. Thanks for listening.

Janie

May 12, 2006

>

> It came back that my son has

> translocated first and seventh cromosomes.

And that does mean anything specific?

> At yesterdays appointment she ask me would you like to

> know for sure that your son has aspergers?

I think that's an odd question, but I don't know the circumstances.

It's like asking if you want to know for sure if someone is nice.

It's always a subjective opinion in the end.

< Next she told me that she thought that my son

> being large could contribute to asperger like symptoms.

How so? Does she mean in a neurological way, or because he might be bigger than

his

peers, that may contribute to social problems.

<. What

> about play therapy? Has anyone else had any experiance with getting

> someone who is experianced in play therapy?

My son was in play therapy for two years before he was dx'd. He was very

frustrated

with everything and she helped him develop strategies to deal with it. Not

perfect

but we made a lot of progress. He would have been better off if we had known

what the

actual problem was, we would have been with a specialist. Such is life.

Jackie

May 12, 2006

As a Mom with 2 children who have learning disabilties/differences I

would like to share what I believe what the geneticist was trying to

relay: There is a question in their mind whether or not the

chromosome translocation is the true reason for any differences

perceived in the past that led to the diagnosis of Aspergers. They

are wondering whether or not he has been misdiagnosed. It may be that

your son does not have AS, but the chromosome condition similates ASD-

like qualities. My daughter, for example, has a duplication of a

partial chromosome and has been described as having " autistic

tendencies. " It is a very rare disorder, but it appears that other

children with the duplication also have the same traits. Whether she

has autism or simply a manifestation of the chromosome abberation is

questionable and I do not think that even in our day and age,

physicians are knowledgable enough to make any conclusive arguements

either way. I know, just as you said, it feels like you are at square

one again, but really you are not: the insight can be valuable at

retaining services based upon a more concrete evaluation. Treatment

does not have to vary, he is still the same boy with or without and

the therapies that have worked in the past for him will still

continue to be successful. It is also helpful to know whether other

members in your family may carry the translocation as well (many

people do without any obvious signs!)

Take Care and try not to worry over the diagnosis itself, just keep

on plugging ahead on what works for your child. You may also find

some useful advise in an organization named NORD (National

Organization for Rare Disorders) as they often have links to support

groups particular to a disorder, including rare translocations of

chromosomes. Good-luck!

Velvet

> >

> > It came back that my son has

> > translocated first and seventh cromosomes.

>

> And that does mean anything specific?

>

> > At yesterdays appointment she ask me would you like to

> > know for sure that your son has aspergers?

>

> I think that's an odd question, but I don't know the circumstances.

> It's like asking if you want to know for sure if someone is nice.

> It's always a subjective opinion in the end.

>

> < Next she told me that she thought that my son

> > being large could contribute to asperger like symptoms.

>

> How so? Does she mean in a neurological way, or because he might

be bigger than his

> peers, that may contribute to social problems.

>

> <. What

> > about play therapy? Has anyone else had any experiance with

getting

> > someone who is experianced in play therapy?

>

> My son was in play therapy for two years before he was dx'd. He

was very frustrated

> with everything and she helped him develop strategies to deal with

it. Not perfect

> but we made a lot of progress. He would have been better off if

we had known what the

> actual problem was, we would have been with a specialist. Such is

life.

>

> Jackie

>

May 13, 2006

my son has asperger's and is very large too, he seems to not know the limits

with eating, and over eats so much that his tummy hurts, He has had a 80

pound gain in one year.......and I know he uses food to sooth any kind of

feeling he is having, whether it be good or bad, but especially with other kids

etc........picking on him, that really makes the eating sky rocket, I am

extremely worried about him, to the point I have even thought about locking the

fridge, when I say NO MORE, he sneaks when I am out of the kitchen, any one

KNOW

or have any suggestions with this?

Thanks,

Lynda

May 13, 2006

My friend had a similar issue with his son (who is not

on the spectrum.) He realized that it was very hard

for him to stop his son ... so he did the next best

thing: he stopped getting any processed foods (chips,

cookies, coke, etc.) and instead stocked his pantry

and fridge with healthy foods such as nuts, fried

peas, carrots, etc.

Its funny how quickly your tummy tells you that its

full when you're eating carrots

--- CLNALT@... wrote:

> my son has asperger's and is very large too, he

> seems to not know the limits

> with eating, and over eats so much that his tummy

> hurts, He has had a 80

> pound gain in one year.......and I know he uses food

> to sooth any kind of

> feeling he is having, whether it be good or bad, but

> especially with other kids

> etc........picking on him, that really makes the

> eating sky rocket, I am

> extremely worried about him, to the point I have

> even thought about locking the

> fridge, when I say NO MORE, he sneaks when I am out

> of the kitchen, any one KNOW

> or have any suggestions with this?

> Thanks,

> Lynda

>

> [Non-text portions of this message have been

> removed]

>

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May 16, 2006

Subject: ( ) Stressed out about Doctors appointment