Hannah's latest appt/and new injury GRRR

[Guest guest]

Beth,

I told about Hannah. How many Stitches did she get said.

My Son was always getting Stitches and got the Sprains and Broken

bones. lololol. Did Hannah make you watch each Stitch go in?

I wish we could put the Kid's in a Bubble so they stayed Healthy. But we

can't. Us as Mom's try to protect them with all we have. Then they have to

set loose and find thing's out on their own.

Ok on the funny part of the pole. Back several years ago. My Mother in

law was in the house and I was in the garage. She hollered for me and I started

to run out of the garage to see what she wanted. Ummmm I didn't make it out

as my father in law left the 2 x 6 door thingy hanging off the Garage door

and I ran right into it. It knocked me slap on my back lolololol. My nose got

the blunt of it all to. lololol. I am always popping my head on something.

Just 5 weeks ago I climbed up on a counter in the garage and turned and smacked

my head right on the garage door. moved around and I be dang if I didn't hit

the other side of my head. lololol. I said to myself dang Robbin didn't you

feel it the first time lololol. Well the next day my brother parked his Big

truck to close to the walkway and I ran right into his Mirror Yep this time it

brought blood. lololol I didn't know the anything about the blood until I

took my hat off.

Just tell Hannah to watch out for poles lololol. said to tell

Hannah hope she feels better soon.

Robbin

[Guest guest]

Hi everyone:

We took Hannah for her pain management appt yesterday. Overall it went pretty

well and doctors and nurses we saw were wonderful with Hannah. The appt lasted

for 1 1/2 hours. Much of that was spent talking with 2 doctors and a nurse.

They took Hannah out of the room for about 30 minutes and had the doctor,

counselor and PT person evaluate her.

The three " team " member then met and came back in with their recommendations.

The first they said was that they too do not feel Hannah has JRA. They said her

lab work, xrays and exam just do not support that. He mentioned Ehlers-Danlos

Syndrome, but said it was too soon to make that diagnosis. He said she

definitely has wide spread musculoskelatal pain and joint pain. The PT also

told the doctor that she definitely has pain in her hips. I guess for now we

will just watch it closely and we call them if any changes.

He took her off the Mobic and wants us to give her 300mg ibuprofen every 6 hrs

as she has pain. He also prescribed Tramadol (also known as Ultram) which is a

pain med, but not narcotic. I actually take this with great results for my

back. She also going to be meeting with a pediatric psychologist for some

biofeedback exercises (relaxation techniques, stress management, etc) , which we

think will be greatly beneficial.

We are then going to see the " team " again in January to see how she is doing

on the new meds. They feel some of her pain may be exaggerated by her stressing

over this. They also are hoping to improve her quality of sleep. So we told

her her job right now is to be a kid and let us worry about the rest.

So we really did not get any real new answers, but they said even without a

diagnosis they will do everything they can to get her pain free. As a mom, I

can't ask for more than that right now.

As if this child has not been through enough, tonight while getting out of the

car at church in a dark parking, lot she ran into a metal mailbox post and now

has 3 stitches in head!!! She has a terrible headache, but she was sooo brave!

Beth (Hannah, age 10)

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Poor Hannah! Don't you wish we could just wrap them up in bubble wrap and keep

them safe

forever? I really wish I could do that for both Hannah and Elaney!! By the

way, just what is

Ehlers-Danlos Syndrome?---

Beth Yohnk <yohnkmom@...> wrote:

Hi everyone:

We took Hannah for her pain management appt yesterday. Overall it went pretty

well and doctors and nurses we saw were wonderful with Hannah. The appt lasted

for 1 1/2 hours. Much of that was spent talking with 2 doctors and a nurse. They

took Hannah out of the room for about 30 minutes and had the doctor, counselor

and PT person evaluate her.

The three " team " member then met and came back in with their recommendations.

The first they said was that they too do not feel Hannah has JRA. They said her

lab work, xrays and exam just do not support that. He mentioned Ehlers-Danlos

Syndrome, but said it was too soon to make that diagnosis. He said she

definitely has wide spread musculoskelatal pain and joint pain. The PT also told

the doctor that she definitely has pain in her hips. I guess for now we will

just watch it closely and we call them if any changes.

He took her off the Mobic and wants us to give her 300mg ibuprofen every 6 hrs

as she has pain. He also prescribed Tramadol (also known as Ultram) which is a

pain med, but not narcotic. I actually take this with great results for my back.

She also going to be meeting with a pediatric psychologist for some biofeedback

exercises (relaxation techniques, stress management, etc) , which we think will

be greatly beneficial.

We are then going to see the " team " again in January to see how she is doing on

the new meds. They feel some of her pain may be exaggerated by her stressing

over this. They also are hoping to improve her quality of sleep. So we told her

her job right now is to be a kid and let us worry about the rest.

So we really did not get any real new answers, but they said even without a

diagnosis they will do everything they can to get her pain free. As a mom, I

can't ask for more than that right now.

As if this child has not been through enough, tonight while getting out of the

car at church in a dark parking, lot she ran into a metal mailbox post and now

has 3 stitches in head!!! She has a terrible headache, but she was sooo brave!

Beth (Hannah, age 10)

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

:

That's funny, we joke about turning her into bubble girl (remember the old

Travolta movie, Bubble Boy?) I'm thinking more and more of doing this LOL.

Ehler's-s is a joint and connective tissue disorder. There are six

varieties of this. The one that would be affecting Hannah has to do with

hypermobile joints and muscle/joint pain. Luckily she does not have skin

involvement. My good friend's daughter also has this and she has skin

involvement. She gets stitches all the time. Any little cut needs stitches.

Thank God Hannah does not have skin involvement.

Beth

Pickering <rebpick1artist@...> wrote:

Poor Hannah! Don't you wish we could just wrap them up in bubble wrap

and keep them safe

forever? I really wish I could do that for both Hannah and Elaney!! By the way,

just what is

Ehlers-Danlos Syndrome?---

Beth Yohnk <yohnkmom@...> wrote:

Hi everyone:

We took Hannah for her pain management appt yesterday. Overall it went pretty

well and doctors and nurses we saw were wonderful with Hannah. The appt lasted

for 1 1/2 hours. Much of that was spent talking with 2 doctors and a nurse. They

took Hannah out of the room for about 30 minutes and had the doctor, counselor

and PT person evaluate her.

The three " team " member then met and came back in with their recommendations.

The first they said was that they too do not feel Hannah has JRA. They said her

lab work, xrays and exam just do not support that. He mentioned Ehlers-Danlos

Syndrome, but said it was too soon to make that diagnosis. He said she

definitely has wide spread musculoskelatal pain and joint pain. The PT also told

the doctor that she definitely has pain in her hips. I guess for now we will

just watch it closely and we call them if any changes.

He took her off the Mobic and wants us to give her 300mg ibuprofen every 6 hrs

as she has pain. He also prescribed Tramadol (also known as Ultram) which is a

pain med, but not narcotic. I actually take this with great results for my back.

She also going to be meeting with a pediatric psychologist for some biofeedback

exercises (relaxation techniques, stress management, etc) , which we think will

be greatly beneficial.

We are then going to see the " team " again in January to see how she is doing on

the new meds. They feel some of her pain may be exaggerated by her stressing

over this. They also are hoping to improve her quality of sleep. So we told her

her job right now is to be a kid and let us worry about the rest.

So we really did not get any real new answers, but they said even without a

diagnosis they will do everything they can to get her pain free. As a mom, I

can't ask for more than that right now.

As if this child has not been through enough, tonight while getting out of the

car at church in a dark parking, lot she ran into a metal mailbox post and now

has 3 stitches in head!!! She has a terrible headache, but she was sooo brave!

Beth (Hannah, age 10)

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Hi Robbin:

It was only 3 stitches, but I could not believe how much blood there was. I

think Miss Hannah has had enough injuries for one little for this year (and

next). She needs a break, poor kid. She actually wanted to watch them do it,

but of course it was on the front of her head at the hairline so that would have

been a little difficult. So the gym teacher will love us, the ped said no gym

or recess until the stitches come out because of where they are and he wants to

be sure she did not get a concussion too, heavy sigh.

Oh well, someday she will laugh at all of this.

Beth

Robbin40@... wrote:

Beth,

I told about Hannah. How many Stitches did she get said.

My Son was always getting Stitches and got the Sprains and Broken

bones. lololol. Did Hannah make you watch each Stitch go in?

I wish we could put the Kid's in a Bubble so they stayed Healthy. But we

can't. Us as Mom's try to protect them with all we have. Then they have to

set loose and find thing's out on their own.

Ok on the funny part of the pole. Back several years ago. My Mother in

law was in the house and I was in the garage. She hollered for me and I started

to run out of the garage to see what she wanted. Ummmm I didn't make it out

as my father in law left the 2 x 6 door thingy hanging off the Garage door

and I ran right into it. It knocked me slap on my back lolololol. My nose got

the blunt of it all to. lololol. I am always popping my head on something.

Just 5 weeks ago I climbed up on a counter in the garage and turned and smacked

my head right on the garage door. moved around and I be dang if I didn't hit

the other side of my head. lololol. I said to myself dang Robbin didn't you

feel it the first time lololol. Well the next day my brother parked his Big

truck to close to the walkway and I ran right into his Mirror Yep this time it

brought blood. lololol I didn't know the anything about the blood until I

took my hat off.

Just tell Hannah to watch out for poles lololol. said to tell

Hannah hope she feels better soon.

Robbin

[Guest guest]

Beth,

You make me Laugh.....War scar added to her list now. When would

get hurt I would say well it looks like the other one won that fight. We

laugh about what the kid's done growing up. My Son's slam dunk Micheal Jordan

play got his ankle broke half into. lolol. got picked on after the

Wrist

was broken as we said ummm I think we need to keep you away from the boys

now. lololol. Now my son watched the Dr stitch him up once as that Light was

shiney like a mirror and he watched every stitch go in. Besides me watching

each go in to. But 3 Stitches is enough right? lolol.

How are y'all doing?

RObbin

[Guest guest]

Hi Helen:

I remembered you telling be about Ehlers Danlos a while ago and did a lot

research on it. A good friend of mine has a young daughter who has this is.

She has joint pain, but also has severe skin involvement. This poor kid looks

like a road map from all the stitches she's had. She sent me some great links

and has really helped answer a lot of my questions. She has had her daughter

to a geneticist and like us there is no family history of this disease. She

tells me more than 90% of patients with EDS have family history of it. I'll

keep you posted on that. Is there a test they did on Nick for this? I did not

think there was a specific test for this disease, but I could be wrong.

Glad to hear Nick is doing so well.

Sending Prayers & Happy Thoughts,

Beth (Hannah, 10; unspecified arthritis, asthma, gerd)

hburger64 <hburger64@...> wrote:

-Beth

Sorry this reply is so late, im playing catching ( im sick with the

flu or something)

Im glad the appt went well, and that you have a plan. Im interested

to hear about any further testing they might do concerning the

Elhers Danlos as this is something the geneicist and cardiologist

thinks might have in addition to his systemic JRA.

Im sorry about the stitches, ouch!!! hope they heal fast, did you

know with the Elhers Danlos there can be skin involvement in which

it takes longer for wounds etc to heal. i was told if Nick needed

stitches that they might have to stay in longer to give it more time

to heal ( keep an eye on it)

hugs Helen and (9,systemic)

hugs Helen and -- In , Beth Yohnk

<yohnkmom@...> wrote:

>

> Hi everyone:

>

> We took Hannah for her pain management appt yesterday. Overall

it went pretty well and doctors and nurses we saw were wonderful

with Hannah. The appt lasted for 1 1/2 hours. Much of that was

spent talking with 2 doctors and a nurse. They took Hannah out of

the room for about 30 minutes and had the doctor, counselor and PT

person evaluate her.

>

> The three " team " member then met and came back in with their

recommendations. The first they said was that they too do not feel

Hannah has JRA. They said her lab work, xrays and exam just do not

support that. He mentioned Ehlers-Danlos Syndrome, but said it was

too soon to make that diagnosis. He said she definitely has wide

spread musculoskelatal pain and joint pain. The PT also told the

doctor that she definitely has pain in her hips. I guess for now we

will just watch it closely and we call them if any changes.

>

> He took her off the Mobic and wants us to give her 300mg

ibuprofen every 6 hrs as she has pain. He also prescribed Tramadol

(also known as Ultram) which is a pain med, but not narcotic. I

actually take this with great results for my back. She also going

to be meeting with a pediatric psychologist for some biofeedback

exercises (relaxation techniques, stress management, etc) , which we

think will be greatly beneficial.

>

> We are then going to see the " team " again in January to see how

she is doing on the new meds. They feel some of her pain may be

exaggerated by her stressing over this. They also are hoping to

improve her quality of sleep. So we told her her job right now is

to be a kid and let us worry about the rest.

>

> So we really did not get any real new answers, but they said

even without a diagnosis they will do everything they can to get her

pain free. As a mom, I can't ask for more than that right now.

>

> As if this child has not been through enough, tonight while

getting out of the car at church in a dark parking, lot she ran into

a metal mailbox post and now has 3 stitches in head!!! She has a

terrible headache, but she was sooo brave!

>

> Beth (Hannah, age 10)

>

>

>

> Sending prayers & happy thoughts,

> Beth :-)

>

>

>

>

>

>

>

>

[Guest guest]

Beth,

there are various tests to look for the different types of EDS. A

skin biospy can look for collegen mutations. DNA testing can also

identify the vascular type EDS.

We have not gone further with our testing at this point. As you know

Nick does have the heart involvement associated with EDS and Marfans,

he has hypermobility is some of this joints, lax skin, " Cigarette

paper " scars on his knees which is also a sign of EDS. He takes

forever to heal. His bee stings from July have finally healed, but

left nasty red scars. Thankfully hes never needed stitches.

If we had seen changes in his heart condition last month then i would

have wanted to go back to the geneticist and look further into this,

but at this time, I dont think anything would be gained from further

testing. As long as nothing else shows up in the mean time, we will

go back the geneticist in the fall 2008 as orginally planned.

Hows the pain management working for Hannah??

hugs Helen and (9, systemic)

-- In , Beth Yohnk <yohnkmom@...> wrote:

>

> Hi Helen:

>

> I remembered you telling be about Ehlers Danlos a while ago and

did a lot research on it. A good friend of mine has a young daughter

who has this is. She has joint pain, but also has severe skin

involvement. This poor kid looks like a road map from all the

stitches she's had. She sent me some great links and has really

helped answer a lot of my questions. She has had her daughter to a

geneticist and like us there is no family history of this disease.

She tells me more than 90% of patients with EDS have family history

of it. I'll keep you posted on that. Is there a test they did on

Nick for this? I did not think there was a specific test for this

disease, but I could be wrong.

>

> Glad to hear Nick is doing so well.

>

> Sending Prayers & Happy Thoughts,

> Beth (Hannah, 10; unspecified arthritis, asthma, gerd)

>

> hburger64 <hburger64@...> wrote:

> -Beth

>

> Sorry this reply is so late, im playing catching ( im sick with the

> flu or something)

>

> Im glad the appt went well, and that you have a plan. Im interested

> to hear about any further testing they might do concerning the

> Elhers Danlos as this is something the geneicist and cardiologist

> thinks might have in addition to his systemic JRA.

>

> Im sorry about the stitches, ouch!!! hope they heal fast, did you

> know with the Elhers Danlos there can be skin involvement in which

> it takes longer for wounds etc to heal. i was told if Nick needed

> stitches that they might have to stay in longer to give it more

time

> to heal ( keep an eye on it)

>

> hugs Helen and (9,systemic)

>

> hugs Helen and -- In , Beth Yohnk

> <yohnkmom@> wrote:

> >

> > Hi everyone:

> >

> > We took Hannah for her pain management appt yesterday. Overall

> it went pretty well and doctors and nurses we saw were wonderful

> with Hannah. The appt lasted for 1 1/2 hours. Much of that was

> spent talking with 2 doctors and a nurse. They took Hannah out of

> the room for about 30 minutes and had the doctor, counselor and PT

> person evaluate her.

> >

> > The three " team " member then met and came back in with their

> recommendations. The first they said was that they too do not feel

> Hannah has JRA. They said her lab work, xrays and exam just do not

> support that. He mentioned Ehlers-Danlos Syndrome, but said it was

> too soon to make that diagnosis. He said she definitely has wide

> spread musculoskelatal pain and joint pain. The PT also told the

> doctor that she definitely has pain in her hips. I guess for now we

> will just watch it closely and we call them if any changes.

> >

> > He took her off the Mobic and wants us to give her 300mg

> ibuprofen every 6 hrs as she has pain. He also prescribed Tramadol

> (also known as Ultram) which is a pain med, but not narcotic. I

> actually take this with great results for my back. She also going

> to be meeting with a pediatric psychologist for some biofeedback

> exercises (relaxation techniques, stress management, etc) , which

we

> think will be greatly beneficial.

> >

> > We are then going to see the " team " again in January to see how

> she is doing on the new meds. They feel some of her pain may be

> exaggerated by her stressing over this. They also are hoping to

> improve her quality of sleep. So we told her her job right now is

> to be a kid and let us worry about the rest.

> >

> > So we really did not get any real new answers, but they said

> even without a diagnosis they will do everything they can to get

her

> pain free. As a mom, I can't ask for more than that right now.

> >

> > As if this child has not been through enough, tonight while

> getting out of the car at church in a dark parking, lot she ran

into

> a metal mailbox post and now has 3 stitches in head!!! She has a

> terrible headache, but she was sooo brave!

> >

> > Beth (Hannah, age 10)

> >

> >

> >

> > Sending prayers & happy thoughts,

> > Beth :-)

> >

> >

> >

> >

> >

> >

> >

> >