Jan,

I am so sorry you are having such a time with doctors!!
Please get a second and 3rd opinion...and not from a doctor that the
original docs refer you to....take all the medical records and go to
another surgeon.

I know it is very frustrating...and a hassle to have to change docs
but when your child is in pain and not getting any better something
HAS to be done and apparently this set of docs does not want to do
anything.

Castle

--- In cerebralpalsy@yahoogroups.com, JnDysn@... wrote:
>
>
> Hi I am new to the group and am having some very difficult times
with my son right now.
Jacob is 10 years old and has CP, he is in a wheelchair and is
starting to walk a little bit more and more in his walker.
The problems that we are having is medical issues with a constant
pain in his stomach,
This abdominal pain has been going on and off for a 1 1/2 years now,
but the last 6 weeks has been the worst which has caused Jacob to not
want to eat, sleep or go to school.
He wants Mom with him all the time, even to sleep at night.

>
> We had several scans and tests run and here is what they know so
far, they know that when he eats food gets hung up in the esophagus
then when it finally breaks through, the stomach isn't emptying
properly, and that he has a Hiatal
Hernia, also the fundlyplication surgery that they did when he was 2
has come on done.? The
Radiologist who did the scans said that his recommendation was
surgery to correct all of that.
Jacob's pediatric gastrointerologist and pediatric surgeon both say
that they feel that there must be something more going on and they
are hesitant to operate because they feel there must be something
more going on.
The amount of pain Jacob says he is in doesn't equate to what they
see.
And they seem to be splitting hairs over whether Jacob is really in
the amount?of pain that he says he is in or not.
Jacob at first was saying it was a 3-4 pain, but the last 6 weeks
has been saying it is a level 8 pain.
I know my son and he has had so many surgeries and hospital stays
and he knows pain and never has complained like this.
>
> We were in the hospital for 4 days 2 weeks
ago and thought that they were going to do surgery on that Friday,
but they said they wanted a couple of other specialist to look at
Jacob, the specialist they brought in were a Hypnotists and a child
psychiatrist.
The hypnotists asked Jacob if he would like to walk and if he would
like to be free from pain, and what if he told Jacob he could
hypnotize him and make that happen.
I looked at him and asked him if he thought he was God or something,
because Jacob has CP and brain damage the part of the brain that is
damaged is the part that controls the muscles.
I told him that we have been praying for 10 years for Jacob to walk
and he has been through 10 years of aggressive therapy to walk and he
thought he could just hypnotize Jacob and say rise up and walk and
that would happen.
I would kiss the ground that he walks on and his feet if that could
happen, but I don't think he is God.
>
> The other Dr. they sent us to was a CP Dr. who said that this was
she thought all from the gastric problems.
And that the surgeon needed to do something.
They remembered when Jacob was little and had problems like this with
not eating the stomach not emptying and that they hesitated to do
surgery then and once they did he was like a new child.
I had been trying to tell them that all along.? She also said she
felt something that felt like maybe a tear or pulling away of the
stomach, maybe another hernia right where Jacob points to the pain
which is above the belly button.

>
> The surgeon mean while is on vacation for 2 weeks and my son is
suffering.
I am wondering if any other parents have dealt with anything like
this
Or have any ideas. A lady that I work with said she went thought the
exact same thing with a hernia and Dr.'s telling her it wasn't big
enough to cause all of that pain and yet
when they finally agreed to operate they found that the scans had
only picked up the top part of the hernia and the rest of it rather
large in size had spidered underneath other organs.

>
> I have been fighting this battle as I said for 1 1/2 years, Jacob
will get really bad and de_hydrated and end up in the hospital for a
few days, start feeling a
little better and then a month or so we are back in the hospital.?
This time he has been in the hospital
twice for several days and hasn't wanted to leave the hospital, he
keeps saying "Mom why don't they do something this hurts really bad,
why don't they just operate and get it over with so I can feel better
Now he is starting to get very depressed.
He cries a lot and says that he is feeling really sad and doesn't
want to feel sad, but he can't help it.
>
> I am so torn up over all of this and feel so helpless.? I am trying
to stay strong for him.
This week his Dad told him that he had missed to much school he had
to start going back to school, because he has missed almost 2 months
of school, and that he would have to miss school when and if they do
operate.
So every morning this week it is the same thing, Jacob crying and
saying " Why are you making me go to school?
You are only making me cause dad says so.
Can't you see I am in so much pain"? He is very smart cognitively
and he loves school.
When I took him to school Monday morning, there were 65 kids there
to great him, clapping and cheering, Yeah Jacob is back, Yeah Jacob
is back.
He had a big old smile on his face, and yet still fights us on going
because of the pain.
>
> I am trying to work full-time and take care of everything else at
home with 2 other older boys.

>
> I am sorry this is so lengthy, any thoughts are help would be so
greatly appreciated.
>
> Thanks and God Bless,
> Jan
>
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>
>
>
> How is everyone doing? Please take a second to give us a update.
Let us know
> if there are any new milestones your child has reached. Anything
new in your
> life. Also remember to post a link to your personal website.
>
> Thanks!
> Castle
> Group Owner
>
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