RE: Finally a probable diagnosis!

[Guest guest]

Hi Beth,

   I guess this is probably a bittersweet diagnosis for the both of you.. Now we

will just pray they come up with a way to help the both of you to ease your

pain.

   People with Osteogenesis Imperfecta also have hypermobility, because Maggie

is in her chair most of the time now we don't notice it so much but when she was

up and walking around it really exhausted her to keep everything going in the

right direction!! She also hyperextented her knee's horribly which made her very

unstable.  She would stand, run, fall and break! (not such a great combo!)

  We are thinking of you guys here in Iowa, things have been so busy trying to

take care of both girls. Allyson has responed beautifully to her meds, now if we

can just get her to continue taking them. She is a freshman in highschool and

knows so much more than both her doctor and I. Maggie is just Maggie and as

always her life is chaos!

  Take care and have a wonderful Mother's Day!!  Sending hugs to Hannah too!

  Diane and Maggie age 11 (OI,CP, Autoinflammatory, Autoimmune, Primary

Immunodeficiency, Uveitis.....etc etc

                   Allyson age 15 (Lupus, Poly Arthritis)

 

From: Beth Yohnk <yohnkmom@...>

Subject: Finally a probable diagnosis!

Date: Sunday, May 10, 2009, 1:22 AM

Hello everyone. 

I haven't posted much lately as not much has changed with Hannah.  She still has

widespread joint pain with occasional swelling in her hands/knees/ elbows and

ankles.  If you remember she is extremely hypermobile in every joint.  She has

also been getting treatment for vitamin d deficiency, which contributes to the

joint pain.  She had been up at 1,200 units of vit d daily, which she did for 6

weeks.  When he bumped her dose up her level got up to 26 (32 or better is the

goal).  When we repeated the labs she actually dropped back down to 20.  She is

now on 50,000 units weekly and will take the last dose tomorrow.  Repeat labs

one week after that.

The other thing that has happened is that I have developed joint pain in most of

the same joints as Hannah.  I had already been diagnosed with OA in my back and

neck. Thursday I took my first trip to a rheumy.  He was awesome and thorough

spending over an hour with me.  He took the most involved history I've ever

given.  When we got to my family, he was quite intrigued with Hannah's story

(his exact words were tell me everything from the beginning).  After an

extensive exam he diagnosed me with OA secondary to Hypermobility  Joint

Syndrome.  Turns out I'm hypermobile in every joint too, including my feet.  He

said without even seeing Hannah, based on what I told him she has the same exact

thing.  Interesting how someone who never saw her came up with this and 6 years

going to doctor after doctor couldn't.

Hope you will continue to accept us here.  There are NO groups for kids with

OA.  We could take Hannah to see this doctor, unfortunately  he said until they

come out with a real med for OA, there isn't anything more he could do for.  He

assured me we are doing with right things with her braces, ice, Tylenol, etc.

and to let him know if I have any quesitons about either one of us.  WOW

Beth & Hannah, 12, probable OA secondary to Hypermobility Joint Syndrome (HMJS);

asthma; vitamin d deficiency.

 

Beth

" We can't direct the wind, but we can adjust our sails " -author unknown

[Guest guest]

i know someone with a OA childhood disease but can't think of the n ame of

the disease.. it's unusual... she has fairly severe arthritis but its OA

from early childhood and uses a wheelchair off and on. She's in medical

school now.

if you would like me to ask her to talk with you all,,. i will... she's

really cool and nice. She's working in her pediatric rotation now and I know

her via online. She is rather short for her age. She is a great writer,

funny and well of course, inspiring.. ha...

anyways, sounds like things are getting closer and closer to an answer for

Hannah.

Hugs

Issadora

On Sat, May 9, 2009 at 10:58 PM, Diane Wiederholt <hockeytough@...>wrote:

>

>

> Hi Beth,

>

> I guess this is probably a bittersweet diagnosis for the both of you..

> Now we will just pray they come up with a way to help the both of you to

> ease your pain.

>

> People with Osteogenesis Imperfecta also have hypermobility, because

> Maggie is in her chair most of the time now we don't notice it so much but

> when she was up and walking around it really exhausted her to keep

> everything going in the right direction!! She also hyperextented her knee's

> horribly which made her very unstable. She would stand, run, fall and

> break! (not such a great combo!)

>

> We are thinking of you guys here in Iowa, things have been so busy trying

> to take care of both girls. Allyson has responed beautifully to her meds,

> now if we can just get her to continue taking them. She is a freshman in

> highschool and knows so much more than both her doctor and I. Maggie is just

> Maggie and as always her life is chaos!

>

> Take care and have a wonderful Mother's Day!! Sending hugs to Hannah

> too!

>

> Diane and Maggie age 11 (OI,CP, Autoinflammatory, Autoimmune, Primary

> Immunodeficiency, Uveitis.....etc etc

> Allyson age 15 (Lupus, Poly Arthritis)

>

>

>

>

>

> From: Beth Yohnk <yohnkmom@... <yohnkmom%40sbcglobal.net>>

> Subject: Finally a probable diagnosis!

> < %40>

> Date: Sunday, May 10, 2009, 1:22 AM

>

> Hello everyone.

>

> I haven't posted much lately as not much has changed with Hannah. She

> still has widespread joint pain with occasional swelling in her hands/knees/

> elbows and ankles. If you remember she is extremely hypermobile in every

> joint. She has also been getting treatment for vitamin d deficiency, which

> contributes to the joint pain. She had been up at 1,200 units of vit d

> daily, which she did for 6 weeks. When he bumped her dose up her level got

> up to 26 (32 or better is the goal). When we repeated the labs she actually

> dropped back down to 20. She is now on 50,000 units weekly and will take

> the last dose tomorrow. Repeat labs one week after that.

>

> The other thing that has happened is that I have developed joint pain in

> most of the same joints as Hannah. I had already been diagnosed with OA in

> my back and neck. Thursday I took my first trip to a rheumy. He was awesome

> and thorough spending over an hour with me. He took the most involved

> history I've ever given. When we got to my family, he was quite intrigued

> with Hannah's story (his exact words were tell me everything from the

> beginning). After an extensive exam he diagnosed me with OA secondary

> to Hypermobility Joint Syndrome. Turns out I'm hypermobile in every joint

> too, including my feet. He said without even seeing Hannah, based on what I

> told him she has the same exact thing. Interesting how someone who never

> saw her came up with this and 6 years going to doctor after doctor couldn't.

>

> Hope you will continue to accept us here. There are NO groups for kids

> with OA. We could take Hannah to see this doctor, unfortunately he said

> until they come out with a real med for OA, there isn't anything more he

> could do for. He assured me we are doing with right things with her braces,

> ice, Tylenol, etc. and to let him know if I have any quesitons about either

> one of us. WOW

>

> Beth & Hannah, 12, probable OA secondary to Hypermobility Joint Syndrome

> (HMJS); asthma; vitamin d deficiency.

>

>

>

> Beth

>

> " We can't direct the wind, but we can adjust our sails " -author unknown

>

>

[Guest guest]

Hi Beth,

Remember this, You and Hannah are in the right place here in this

group. Remember another Parent may need your idea or knowledge here. We all are

Family. JA means Juvenile Arthritis and on this there's 100 forms of

Arthritis so this means she still has Juvenile Arthritis. :-). OA is a form of

Arthritis.

Now about the Vitamin D issue. Last summer our Dr did a test on both

hubby and step dad and they were given Vitamin D pills 50,000 units per week.

PLUS they had to sit out in the sun for 20 to 25 minutes per day. Well it

has worked some.

For she gets to craving Milk at times. This yr though she has

been going out and laying in the sun for 30 minutes per day 15 minutes on

one side and 15 on the other side lololol.

There was a piece in our local paper about this very thing. A lot of

people do not realize they are Vitamin D def as Drs do not screen for this.

You have to ask your Dr to test you for it. So this is a good thing to ask

your Dr about.

I am glad though you have gotten a Diagnosis for you and Hannah.

Here's a Study though. How many of the JA kid's have a Parent who

experienced Joint pain prior to their child or after their child was Diagnosed?

In my time with dealing with JA I have noticed many Mom's end up with

Arthritis or Joint pain. Some in this group and some who I know locally.

Here again is it enviromental, A Gene? What? Why does the Parent end

up with this later and the child it hits hard in childhood? Is it food's?

What makes it come out earlier for our kid's and later for us?

I am so glad they are doing research on this Gene and I wish they

would come to this group and listen and take notes about it. A CURE? Maybe down

the road. But us Mom's here could give them a lot of info.

Robbin

P.S. Beth stay and be happy :-). I am staying even though is not

a child anymore she is a Adult. Y'all are my second Family here and we all

care about each other and Our JA Kids.

**************Recession-proof vacation ideas. Find free things to do in

the U.S.

(http://travel.aol.com/travel-ideas/domestic/national-tourism-week?ncid=emlcntus\

trav00000002)

[Guest guest]

Ostio Arthritis?

From: [mailto: ] On Behalf

Of Issadora

Sent: 10 May 2009 07:43

Subject: Re: Finally a probable diagnosis!

i know someone with a OA childhood disease but can't think of the n ame of

the disease.. it's unusual... she has fairly severe arthritis but its OA

from early childhood and uses a wheelchair off and on. She's in medical

school now.

if you would like me to ask her to talk with you all,,. i will... she's

really cool and nice. She's working in her pediatric rotation now and I know

her via online. She is rather short for her age. She is a great writer,

funny and well of course, inspiring.. ha...

anyways, sounds like things are getting closer and closer to an answer for

Hannah.

Hugs

Issadora

On Sat, May 9, 2009 at 10:58 PM, Diane Wiederholt <hockeytough@...

<mailto:hockeytough%40> >wrote:

>

>

> Hi Beth,

>

> I guess this is probably a bittersweet diagnosis for the both of you..

> Now we will just pray they come up with a way to help the both of you to

> ease your pain.

>

> People with Osteogenesis Imperfecta also have hypermobility, because

> Maggie is in her chair most of the time now we don't notice it so much but

> when she was up and walking around it really exhausted her to keep

> everything going in the right direction!! She also hyperextented her

knee's

> horribly which made her very unstable. She would stand, run, fall and

> break! (not such a great combo!)

>

> We are thinking of you guys here in Iowa, things have been so busy trying

> to take care of both girls. Allyson has responed beautifully to her meds,

> now if we can just get her to continue taking them. She is a freshman in

> highschool and knows so much more than both her doctor and I. Maggie is

just

> Maggie and as always her life is chaos!

>

> Take care and have a wonderful Mother's Day!! Sending hugs to Hannah

> too!

>

> Diane and Maggie age 11 (OI,CP, Autoinflammatory, Autoimmune, Primary

> Immunodeficiency, Uveitis.....etc etc

> Allyson age 15 (Lupus, Poly Arthritis)

>

>

>

>

>

> From: Beth Yohnk <yohnkmom@... <mailto:yohnkmom%40sbcglobal.net>

<yohnkmom%40sbcglobal.net>>

> Subject: Finally a probable diagnosis!

> <mailto: %40>

< %40>

> Date: Sunday, May 10, 2009, 1:22 AM

>

> Hello everyone.

>

> I haven't posted much lately as not much has changed with Hannah. She

> still has widespread joint pain with occasional swelling in her

hands/knees/

> elbows and ankles. If you remember she is extremely hypermobile in every

> joint. She has also been getting treatment for vitamin d deficiency, which

> contributes to the joint pain. She had been up at 1,200 units of vit d

> daily, which she did for 6 weeks. When he bumped her dose up her level got

> up to 26 (32 or better is the goal). When we repeated the labs she

actually

> dropped back down to 20. She is now on 50,000 units weekly and will take

> the last dose tomorrow. Repeat labs one week after that.

>

> The other thing that has happened is that I have developed joint pain in

> most of the same joints as Hannah. I had already been diagnosed with OA in

> my back and neck. Thursday I took my first trip to a rheumy. He was

awesome

> and thorough spending over an hour with me. He took the most involved

> history I've ever given. When we got to my family, he was quite intrigued

> with Hannah's story (his exact words were tell me everything from the

> beginning). After an extensive exam he diagnosed me with OA secondary

> to Hypermobility Joint Syndrome. Turns out I'm hypermobile in every joint

> too, including my feet. He said without even seeing Hannah, based on what

I

> told him she has the same exact thing. Interesting how someone who never

> saw her came up with this and 6 years going to doctor after doctor

couldn't.

>

> Hope you will continue to accept us here. There are NO groups for kids

> with OA. We could take Hannah to see this doctor, unfortunately he said

> until they come out with a real med for OA, there isn't anything more he

> could do for. He assured me we are doing with right things with her

braces,

> ice, Tylenol, etc. and to let him know if I have any quesitons about

either

> one of us. WOW

>

> Beth & Hannah, 12, probable OA secondary to Hypermobility Joint Syndrome

> (HMJS); asthma; vitamin d deficiency.

>

>

>

> Beth

>

> " We can't direct the wind, but we can adjust our sails " -author unknown

>

>

[Guest guest]

Osteoarthritis?

xxxxxxxx

From: [mailto: ] On Behalf

Of Robbin40@...

Sent: 10 May 2009 15:02

Subject: Re: Finally a probable diagnosis!

Hi Beth,

Remember this, You and Hannah are in the right place here in this

group. Remember another Parent may need your idea or knowledge here. We all

are

Family. JA means Juvenile Arthritis and on this there's 100 forms of

Arthritis so this means she still has Juvenile Arthritis. :-). OA is a form

of

Arthritis.

Now about the Vitamin D issue. Last summer our Dr did a test on both

hubby and step dad and they were given Vitamin D pills 50,000 units per

week.

PLUS they had to sit out in the sun for 20 to 25 minutes per day. Well it

has worked some.

For she gets to craving Milk at times. This yr though she has

been going out and laying in the sun for 30 minutes per day 15 minutes on

one side and 15 on the other side lololol.

There was a piece in our local paper about this very thing. A lot of

people do not realize they are Vitamin D def as Drs do not screen for this.

You have to ask your Dr to test you for it. So this is a good thing to ask

your Dr about.

I am glad though you have gotten a Diagnosis for you and Hannah.

Here's a Study though. How many of the JA kid's have a Parent who

experienced Joint pain prior to their child or after their child was

Diagnosed?

In my time with dealing with JA I have noticed many Mom's end up with

Arthritis or Joint pain. Some in this group and some who I know locally.

Here again is it enviromental, A Gene? What? Why does the Parent end

up with this later and the child it hits hard in childhood? Is it food's?

What makes it come out earlier for our kid's and later for us?

I am so glad they are doing research on this Gene and I wish they

would come to this group and listen and take notes about it. A CURE? Maybe

down

the road. But us Mom's here could give them a lot of info.

Robbin

P.S. Beth stay and be happy :-). I am staying even though is not

a child anymore she is a Adult. Y'all are my second Family here and we all

care about each other and Our JA Kids.

**************Recession-proof vacation ideas. Find free things to do in

the U.S.

(http://travel.aol.com/travel-ideas/domestic/national-tourism-week?ncid=emlc

ntustrav00000002)

[Guest guest]

Oh my Gosh! That has to feel like a weight has been lifted. Although I'm also

very aware that this isn't exactly " good news " , it's a huge step in the right

direction for you. I'm sorry to hear that you are experiencing the same joint

pain. What tx can they do if any? My husband has OA and we have been told

nothing can be done but am fairly sure your OA is not the typical degenerative

OA?

hugs! -Hadley

>

> Hello everyone. 

> I haven't posted much lately as not much has changed with Hannah.  She still

has widespread joint pain with occasional swelling in her hands/knees/elbows and

ankles.  If you remember she is extremely hypermobile in every joint.  She has

also been getting treatment for vitamin d deficiency, which contributes to the

joint pain.  She had been up at 1,200 units of vit d daily, which she did for 6

weeks.  When he bumped her dose up her level got up to 26 (32 or better is the

goal).  When we repeated the labs she actually dropped back down to 20.  She is

now on 50,000 units weekly and will take the last dose tomorrow.  Repeat labs

one week after that.

>

> The other thing that has happened is that I have developed joint pain in most

of the same joints as Hannah.  I had already been diagnosed with OA in my back

and neck. Thursday I took my first trip to a rheumy.  He was awesome and

thorough spending over an hour with me.  He took the most involved history I've

ever given.  When we got to my family, he was quite intrigued with Hannah's

story (his exact words were tell me everything from the beginning).  After an

extensive exam he diagnosed me with OA secondary to Hypermobility Joint

Syndrome.  Turns out I'm hypermobile in every joint too, including my feet.  He

said without even seeing Hannah, based on what I told him she has the same exact

thing.  Interesting how someone who never saw her came up with this and 6 years

going to doctor after doctor couldn't.

>

> Hope you will continue to accept us here.  There are NO groups for kids with

OA.  We could take Hannah to see this doctor, unfortunately he said until they

come out with a real med for OA, there isn't anything more he could do for.  He

assured me we are doing with right things with her braces, ice, Tylenol, etc.

and to let him know if I have any quesitons about either one of us.  WOW

>

> Beth & Hannah, 12, probable OA secondary to Hypermobility Joint Syndrome

(HMJS); asthma; vitamin d deficiency.

>

>  

> Beth

> " We can't direct the wind, but we can adjust our sails " -author unknown

>

>