Where do we go from here?

[Guest guest]

Okay, after I made all these posts yesterday about how well DD was doing,

unbeknownst to her. She had a tummy ache last night, and then this morning, she

could barely get down the stairs. Now, her LEFT hip was in such terrible pain.

She also had PT and counseling today, which kept her moving and busy, but it was

painful for her. She said tonight, she was afraid she won't be able to make it

down the stairs tomorrow. I know she is familiar with her patterns and feelings,

so she may be right, but I pray not. Since we were going to be at the hospital

next door to the dr today, I called them for the back MRI results, which weren't

in, and to ask the dr to order an xray on her left hip. The one time she was

really bad off with her right, he didn't see any sense in doing the xray. But, I

think that it can show something, or a difference from before, if we go ahead

and take a look. He readily agreed and we got that done.

She has had ALL these tests; blood (that showed the RMSF and strep that she was

treated for), xrays (that haven't shown much if anything at all), normal MRIs

and EEGs, physicals, etc. The only thing that did show up after 6 mos, is the

minor tightness in her right leg muscle and right hip. So, she is doing PT.

Then, she is suppose to go to that dreaded physical after the PT is done. She is

so tired of going to the dr, and to say the least, we are tired of going.

So, where do we go from here? It is possible that she has this come and go pain

for up to 2 yrs if she really did have RMSF, only 1 for the strep. Yes, having

both could turn autoimmune, but I really hope it will just work its way out.

So, since there is nothing seriously wrong with her (if anything at this point),

besides intermittant extreme pain, what do we do now? There was a while that we

just lived through the flare ups and didn't bother the dr. Then, after so many

times, I finally did take her back. But, the other dr hasn't found anything new

really. I am inclined to just go with us dealing wtih it on our own unless she

wakes up unable to walk someday, or long lasting fevers. If this is just

residual, it is a waste of time, money and the drs resources to keep going back.

I really think that we have done everything that we can do. I know we could get

second opinions. I did get a call back from Shriner's and I am suppose to call

them back after I get the back MRI results. They would want all the records,

etc. So, that is still an option. But, I also know there are worse children than

her to take those slots.

I really just want honest answers from mothers like you all. Some of you have

read of her journey. If she was your DD, and didn't seem to have anything really

wrong with her besides pain, without hope of a diagnosis, what would you do?

When would you decide the dr should be called again? Kymberli

[Guest guest]

Hello,

I believe a second opinion is definitely in order.  You really want to check out

everything.  You should never think that the slots at Shriners Hospitals are for

others.  I work at a Shriners and everyone is welcomed!  I would suggest you go

there.  Hope you find some answers soon>

 

Maureen

From: fwlady65401 <fwlady65401@...>

Subject: Where do we go from here?

Date: Wednesday, July 29, 2009, 5:51 AM

 

Okay, after I made all these posts yesterday about how well DD was doing,

unbeknownst to her. She had a tummy ache last night, and then this morning, she

could barely get down the stairs. Now, her LEFT hip was in such terrible pain.

She also had PT and counseling today, which kept her moving and busy, but it was

painful for her. She said tonight, she was afraid she won't be able to make it

down the stairs tomorrow. I know she is familiar with her patterns and feelings,

so she may be right, but I pray not. Since we were going to be at the hospital

next door to the dr today, I called them for the back MRI results, which weren't

in, and to ask the dr to order an xray on her left hip. The one time she was

really bad off with her right, he didn't see any sense in doing the xray. But, I

think that it can show something, or a difference from before, if we go ahead

and take a look. He readily agreed and we got that done.

She has had ALL these tests; blood (that showed the RMSF and strep that she was

treated for), xrays (that haven't shown much if anything at all), normal MRIs

and EEGs, physicals, etc. The only thing that did show up after 6 mos, is the

minor tightness in her right leg muscle and right hip. So, she is doing PT.

Then, she is suppose to go to that dreaded physical after the PT is done. She is

so tired of going to the dr, and to say the least, we are tired of going.

So, where do we go from here? It is possible that she has this come and go pain

for up to 2 yrs if she really did have RMSF, only 1 for the strep. Yes, having

both could turn autoimmune, but I really hope it will just work its way out.

So, since there is nothing seriously wrong with her (if anything at this point),

besides intermittant extreme pain, what do we do now? There was a while that we

just lived through the flare ups and didn't bother the dr. Then, after so many

times, I finally did take her back. But, the other dr hasn't found anything new

really. I am inclined to just go with us dealing wtih it on our own unless she

wakes up unable to walk someday, or long lasting fevers. If this is just

residual, it is a waste of time, money and the drs resources to keep going back.

I really think that we have done everything that we can do. I know we could get

second opinions. I did get a call back from Shriner's and I am suppose to call

them back after I get the back MRI results. They would want all the records,

etc. So, that is still an option. But, I also know there are worse children than

her to take those slots.

I really just want honest answers from mothers like you all. Some of you have

read of her journey. If she was your DD, and didn't seem to have anything really

wrong with her besides pain, without hope of a diagnosis, what would you do?

When would you decide the dr should be called again? Kymberli

[Guest guest]

G'day Kymberli,

I take it RMSF = Rocky Mountain Spotted Fever? If so, from what I've

heard and read, it can have long-term effects, and even relapse, years

after the initial infection and treatment (e.g. discussions

http://forums.wrongdiagnosis.com/showthread.php?t=1853

<http://forums.wrongdiagnosis.com/showthread.php?t=1853> )

And from what we've been told about hip pain, it's darn difficult to

diagnose what exactly is going on in there. Bayly has terrible problems

with his left hip, due to JIA, and has had xray, MRI and ultrasound.

The docs explained it to us that xray is next to useless unless there is

a fracture or obvious bone loss or bone density problems.

MRI-with-contrast is best to see anything going on in the smallest

areas. And Ultrasound will only show obvious effusion. So hips are hard!

But if your daughter is having tummy problems, muscle or joint pain, or

weakness, I would definitely ask for a second opinion. If nothing else,

it will put your mind at ease that you have explored every option for

your DD. And if she is having constant pain, then she really needs some

attention as often pain = damage.

As for hating hospitals, and doctors, and testing, I am totally hearing

you on that!!

Best wishes,

Jo

Bayly, 7, extended oligo

>

> Okay, after I made all these posts yesterday about how well DD was

doing, unbeknownst to her. She had a tummy ache last night, and then

this morning, she could barely get down the stairs. Now, her LEFT hip

was in such terrible pain. She also had PT and counseling today, which

kept her moving and busy, but it was painful for her. She said tonight,

she was afraid she won't be able to make it down the stairs tomorrow. I

know she is familiar with her patterns and feelings, so she may be

right, but I pray not. Since we were going to be at the hospital next

door to the dr today, I called them for the back MRI results, which

weren't in, and to ask the dr to order an xray on her left hip. The one

time she was really bad off with her right, he didn't see any sense in

doing the xray. But, I think that it can show something, or a difference

from before, if we go ahead and take a look. He readily agreed and we

got that done.

>

> She has had ALL these tests; blood (that showed the RMSF and strep

that she was treated for), xrays (that haven't shown much if anything at

all), normal MRIs and EEGs, physicals, etc. The only thing that did show

up after 6 mos, is the minor tightness in her right leg muscle and right

hip. So, she is doing PT. Then, she is suppose to go to that dreaded

physical after the PT is done. She is so tired of going to the dr, and

to say the least, we are tired of going.

>

> So, where do we go from here? It is possible that she has this come

and go pain for up to 2 yrs if she really did have RMSF, only 1 for the

strep. Yes, having both could turn autoimmune, but I really hope it will

just work its way out.

>

> So, since there is nothing seriously wrong with her (if anything at

this point), besides intermittant extreme pain, what do we do now? There

was a while that we just lived through the flare ups and didn't bother

the dr. Then, after so many times, I finally did take her back. But, the

other dr hasn't found anything new really. I am inclined to just go with

us dealing wtih it on our own unless she wakes up unable to walk

someday, or long lasting fevers. If this is just residual, it is a waste

of time, money and the drs resources to keep going back. I really think

that we have done everything that we can do. I know we could get second

opinions. I did get a call back from Shriner's and I am suppose to call

them back after I get the back MRI results. They would want all the

records, etc. So, that is still an option. But, I also know there are

worse children than her to take those slots.

>

> I really just want honest answers from mothers like you all. Some of

you have read of her journey. If she was your DD, and didn't seem to

have anything really wrong with her besides pain, without hope of a

diagnosis, what would you do? When would you decide the dr should be

called again? Kymberli

>