Re: Hip Injections / Hip Replacements

[Guest guest]

Colleen:

I have absolutely no words of wisdom on this matter at all. I feel horribly for Caitlin, your right even 12 sounds so young for such a drastic need! I will keep all you in my prayers. Vent anytime we are here for you!

Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Hip Injections / Hip Replacements

Hi-

Caitlin has been having severe problems with her hips this spring. Recent x-rays revealed late stage osteo, as well as avascular necrosis. Too many years of severe inflammation and too many years of prednisone. Both the rheumy and the ortho advised she will need double hip replacement. Because she is only 9 and quite small (48 inches, 52 lbs), we were hoping to put it off until she is at least 12. Even that seems frighteningly young to me! However, they warned me that the pain will progress to the point where she will stop walking and get in a chair - and we will have to take action.

We are hoping to buy some time with hip injections. The doc thinks we may buy up to 15 months of enough pain relief to maintain mobility. I just wanted to see if anybody has had experience with this... if so, was it done under general anesthesia or local... and did it work?

Also, for those that have experience with joint replacement, some advice on the best way to go about that.... and does anybody have a story about a child this young having hips replaced?

I know I don't need to add this..... but this whole thing STINKS! I won't bore with the details, but these are some of the longest, pain filled nights Caitlin has ever had - and I feel more helpless than ever. Because this time, making the inflammation go away won't stop the hurt....

Thanks for the ears-

Colleen (mom to Caitlin, 9, systemic)

Get your own web address.Have a HUGE year through Small Business.

[Guest guest]

Goodness, yes that is way young. I was 24 yrs old (now

I'm 34yrs) when I had my hips replaced. I believe it

was general anesthesia. My hips hurt to walk, sit, lay

down, and you name it. And yes it was the best thing

that I did. My hip pain is mostly gone! You just have

to be careful on how you bend, but the ortho and PT

will let ya know all the good stuff. It was well worth

the surgery....hope this helps. (((HUGS)))

Carla (JRA)

--- Colleen <bookissmom@...> wrote:

> Hi-

>

> Caitlin has been having severe problems with her

> hips this spring. Recent x-rays revealed late stage

> osteo, as well as avascular necrosis. Too many years

> of severe inflammation and too many years of

> prednisone. Both the rheumy and the ortho advised

> she will need double hip replacement. Because she

> is only 9 and quite small (48 inches, 52 lbs), we

> were hoping to put it off until she is at least 12.

> Even that seems frighteningly young to me!

> However, they warned me that the pain will progress

> to the point where she will stop walking and get in

> a chair - and we will have to take action.

>

> We are hoping to buy some time with hip

> injections. The doc thinks we may buy up to 15

> months of enough pain relief to maintain mobility.

> I just wanted to see if anybody has had experience

> with this... if so, was it done under general

> anesthesia or local... and did it work?

>

> Also, for those that have experience with joint

> replacement, some advice on the best way to go about

> that.... and does anybody have a story about a child

> this young having hips replaced?

>

> I know I don't need to add this..... but this

> whole thing STINKS! I won't bore with the details,

> but these are some of the longest, pain filled

> nights Caitlin has ever had - and I feel more

> helpless than ever. Because this time, making the

> inflammation go away won't stop the hurt....

>

> Thanks for the ears-

>

> Colleen (mom to Caitlin, 9, systemic)

>

>

>

> ---------------------------------

> Get your own web address.

> Have a HUGE year through Small Business.

________________________________________________________________________________\

____

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play

Sims Stories at Games.

http://sims./

[Guest guest]

Colleen,I am so sorry to hear of these serious developments for Caitlin.And I think we all need to vent sometimes, especially when it comes to seeing our children in pain.Please know that I will be keeping Caitlin (and you) in my prayers. ()Colleen <bookissmom@...> wrote: Hi- Caitlin has been having severe problems with her hips this spring. Recent x-rays revealed late stage osteo, as well as avascular necrosis. Too many

years of severe inflammation and too many years of prednisone. Both the rheumy and the ortho advised she will need double hip replacement. Because she is only 9 and quite small (48 inches, 52 lbs), we were hoping to put it off until she is at least 12. Even that seems frighteningly young to me! However, they warned me that the pain will progress to the point where she will stop walking and get in a chair - and we will have to take action. We are hoping to buy some time with hip injections. The doc thinks we may buy up to 15 months of enough pain relief to maintain mobility. I just wanted to see if anybody has had experience with this... if so, was it done under general anesthesia or local... and did it work? Also, for those that have experience with joint replacement, some advice on the best way to go about that.... and does anybody have a story about a

child this young having hips replaced? I know I don't need to add this..... but this whole thing STINKS! I won't bore with the details, but these are some of the longest, pain filled nights Caitlin has ever had - and I feel more helpless than ever. Because this time, making the inflammation go away won't stop the hurt.... Thanks for the ears- Colleen (mom to Caitlin, 9, systemic) Get your own web address. Have a HUGE year through Small Business.

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[Guest guest]

Hello Colleen, I'm unfortunately unable to chime in as much as I would like too. When I saw the topic, I felt I had to give my 2 cents worth. My son r ( 9 systemic--48inches, 54lbs-on growth hormone) has had many joint injections. His hips have been problems from the beginning and his ortho has told us hip replacement is in the future. We also heard the news that 12 was the earliest and that we should hold off the longest we could. Ky started having injections when he was 3 and for years his arthritis was uncontrollable. He was under anesthesia and the procedure is rather fast. His rheumy did the first couple injections and after moving and another flare an ortho had done his last. I had heard from a mom here on the list, that after the injections the child should stay off that joint for 48hrs. My rheumy had said that was not necessary but I always took the moms advice. The first injections were great. r was in less pain and had alot more

mobility. I would say it lasted about 6months. We were warned in the beginning that injections would not be the answer but only provide relief. I guess the more they go into the joint the less room there is in the future. We did injections for about 3 years maybe 6 times ttl. We had a period where his arthritis let up and we started slowly going off meds. 6 months later it came back and we were told ky should get a wheelchair and wait for hip replacements(new doctors). I flipped. I pleaded for more injections and the ortho said he would try. To our sorrow they did not work and we order a walker. Ky used a walker instead ( I was told once he ends up in a wheelchair he probably wouldn't walk until replacements) for about a year and half and with prayers and the arthritis deciding to let up he has not used it for 2 years. I would recommend trying it. It should relieve some of the pain. It is summer, and warmer and

hopefully you can get Caitlin feeling better. I apologize for be so long winded, when I read your post I truly felt the need to write. Keep us posted Pamela (r 9, systemic) Colleen <bookissmom@...> wrote: Hi- Caitlin has been having severe problems with her hips this spring. Recent x-rays revealed late stage osteo, as well as avascular necrosis. Too many years of severe inflammation and too many years of

prednisone. Both the rheumy and the ortho advised she will need double hip replacement. Because she is only 9 and quite small (48 inches, 52 lbs), we were hoping to put it off until she is at least 12. Even that seems frighteningly young to me! However, they warned me that the pain will progress to the point where she will stop walking and get in a chair - and we will have to take action. We are hoping to buy some time with hip injections. The doc thinks we may buy up to 15 months of enough pain relief to maintain mobility. I just wanted to see if anybody has had experience with this... if so, was it done under general anesthesia or local... and did it work? Also, for those that have experience with joint replacement, some advice on the best way to go about that.... and does anybody have a story about a child this young having hips replaced? I know I don't need to add this..... but this whole thing STINKS! I won't bore with the details, but these are some of the longest, pain filled nights Caitlin has ever had - and I feel more helpless than ever. Because this time, making the inflammation go away won't stop the hurt.... Thanks for the ears- Colleen (mom to Caitlin, 9, systemic) Get your own web address.Have a HUGE year through Small Business.

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[Guest guest]

Colleen,  I am very sorry to hear about Caitlin's hip problems and the need for hip replacements in the future.  This disease is so devastating.  What medicine protocol has she been on?  I thought that the Kineret like drug she was using was working mostly for her?

 

I dont know of anyone that has had those at an early age.  I know of a nice girl at our school that has leukemia who is only 7 I believe and she has stage 2 AVN.  If you think it would be helpful, I can try to hook you two up by phone.   My best to you and Caitlin during this incredibly hard time.  Jan   

Hip Injections / Hip Replacements

Hi-

 

Caitlin has been having severe problems with her hips this spring.  Recent x-rays revealed late stage osteo, as well as avascular necrosis. Too many years of severe inflammation and too many years of prednisone.   Both the rheumy and the ortho advised she will need double hip replacement.  Because she is only 9 and quite small (48 inches, 52 lbs), we were hoping to put it off until she is at least 12. Even that seems frighteningly young to me!   However, they warned me that the pain will progress to the point where she will stop walking and get in a chair - and we will have to take action.

 

We are hoping to buy some time with hip injections.  The doc thinks we may buy up to 15 months of enough pain relief to maintain mobility.  I just wanted to see if anybody has had experience with this... if so, was it done under general anesthesia or local... and did it work? 

 

Also, for those that have experience with joint replacement, some advice on the best way to go about that.... and does anybody have a story about a child this young having hips replaced?

 

I know I don't need to add this..... but this whole thing STINKS!  I won't bore with the details, but these are some of the longest, pain filled nights Caitlin has ever had - and I feel more helpless than ever. Because this time, making the inflammation go away won't stop the hurt....

 

Thanks for the ears-

 

Colleen (mom to Caitlin, 9, systemic)

 

Get your own web address.

Have a HUGE year through Small Business.

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Colleen,

I am so sorry to hear about Caitlin. It certainly hasn't progressed

to this point due to any lack of trying on your part. You have

fought so hard to get her flare free and to reduce the inflammation.

Caitlin has just been at this for so long and the severity of her

flare has been so extensive.

I am sad to think that hip replacements are likely the next step and

my prayer is that these injections will give her some time and also

her pain wont remain this terrible.

My heart aches for you. You have been through so much. I am sure

your family is being supportive but there is also that feeling as a

mom that makes you feel as if you stand on your own island.

I recently visited with my grandmother in Illinois. She was telling

me the story about her daughter's long 8 year battle against cancer.

My grandma went to be by her side for every surgery, every radiation

and chemo therapy, alternative therapy etc...On her daughters last

day, my grandmother walked in the room and naturally things weren't

going very good at all. Still my aunt said " so, mom what do you

think " As my grandmother told me this tears just streamed down my

face. My aunt was in her late 40's but somehow the belief that our

mothers can somehow fix things and make them all better always exist,

no matter the age. To know as a mom that there is nothing left you

can do, is the most helpless feeling in the world. I believe its

that mother lion in is that will fight at all costs to protect out

child. Sometimes we just don't know what were fighting anymore.

Colleen, the road may not get much easier for awhile. And there may

be little you are able to do to ease Caitlins pain. Your presence,

your love, your constant companionship will bring her comfort.

Please always know that you can come, you can vent and share the

heartache and disappointment. " Its not boring anyone with the

details " -I wish that we could do something to make things better for

you. In the end all we can do is be here for you. Be willing to

listen and perhaps those that have walked this path before you will

be able to shed some light or encouragement to give you strength.

Blessings,

sonia (drea 11 systemic jra/gerd)

-- In , Colleen <bookissmom@...> wrote:

>

> Hi-

>

> Caitlin has been having severe problems with her hips this

spring. Recent x-rays revealed late stage osteo, as well as

avascular necrosis. Too many years of severe inflammation and too

many years of prednisone. Both the rheumy and the ortho advised she

will need double hip replacement. Because she is only 9 and quite

small (48 inches, 52 lbs), we were hoping to put it off until she is

at least 12. Even that seems frighteningly young to me! However,

they warned me that the pain will progress to the point where she

will stop walking and get in a chair - and we will have to take

action.

>

> We are hoping to buy some time with hip injections. The doc

thinks we may buy up to 15 months of enough pain relief to maintain

mobility. I just wanted to see if anybody has had experience with

this... if so, was it done under general anesthesia or local... and

did it work?

>

> Also, for those that have experience with joint replacement, some

advice on the best way to go about that.... and does anybody have a

story about a child this young having hips replaced?

>

> I know I don't need to add this..... but this whole thing

STINKS! I won't bore with the details, but these are some of the

longest, pain filled nights Caitlin has ever had - and I feel more

helpless than ever. Because this time, making the inflammation go

away won't stop the hurt....

>

> Thanks for the ears-

>

> Colleen (mom to Caitlin, 9, systemic)

>

>

>

> ---------------------------------

> Get your own web address.

> Have a HUGE year through Small Business.

>

[Guest guest]

This is quite a obstacle and a challege... real painful.

I know one family with a boy with systemic JRA who has AVN.... think he got it around age 6 I believe??? I know he has been on pain killers and they were trying to wait as long as possible before doing surgery as well. I lost touch with them but I think Iknow how to find them again or at least connect you with my old Pediatric Rheumatologist who would be willing to connect you all ifthey are interested/able Imsure.

I will look into that.

Best of fortune.

Issadora

On 6/2/07, jatwill@... <jatwill@...> wrote:

Colleen, I am very sorry to hear about Caitlin's hip problems and the need for hip replacements in the future. This disease is so devastating. What medicine protocol has she been on? I thought that the Kineret

like drug she was using was working mostly for her? I dont know of anyone that has had those at an early age. I know of a nice girl at our school that has leukemia who is only 7 I believe and she has stage 2 AVN. If you think it would be helpful, I can try to hook you two up by phone. My best to you and Caitlin during this incredibly hard time. Jan Hip Injections / Hip Replacements

Hi-

Caitlin has been having severe problems with her hips this spring. Recent x-rays revealed late stage osteo, as well as avascular necrosis. Too many years of severe inflammation and too many years of prednisone. Both the rheumy and the ortho advised she will need double hip replacement. Because she is only 9 and quite small (48 inches, 52 lbs), we were hoping to put it off until she is at least 12. Even that seems frighteningly young to me! However, they warned me that the pain will progress to the point where she will stop walking and get in a chair - and we will have to take action.

We are hoping to buy some time with hip injections. The doc thinks we may buy up to 15 months of enough pain relief to maintain mobility. I just wanted to see if anybody has had experience with this... if so, was it done under general anesthesia or local... and did it work?

Also, for those that have experience with joint replacement, some advice on the best way to go about that.... and does anybody have a story about a child this young having hips replaced?

I know I don't need to add this..... but this whole thing STINKS! I won't bore with the details, but these are some of the longest, pain filled nights Caitlin has ever had - and I feel more helpless than ever. Because this time, making the inflammation go away won't stop the hurt....

Thanks for the ears-

Colleen (mom to Caitlin, 9, systemic)

Get your own web address.Have a HUGE year through Small Business.

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com

..

-- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

Colleen,

I’m sorry to hear that Caitlin has to

deal with this at such a young age. Life just isn’t fair sometimes.

Several years ago I met a family that was

in a similar situation. The daughter ended up having her hips replaced at 12 or

13 and, from what I heard, did quite well after the surgery. Unfortunately we

lost touch with one another so I can’t give you an update on her.

As you may know, attends a JA camp

every summer. She has several friends there who’ve had hip replacements

and they show their scars off as battle wounds!

A while back was having difficulty

with her hips and the possibility of needing new hips was mentioned as we

waited for the orthopedic appointment. A friend of ours is an orthopedic

surgeon and I called him for advice. The biggest piece of advice he gave us was

to get a second opinion if surgery was suggested. Beyond that, he suggested

looking for someone who had done a lot of replacements in young teens. He

mentioned several places, including Mayo, Hospital for Special Surgery and

s Hopkins. Thankfully did not need surgery and we’ve moved

since then so I have no idea where my notes are. If I find them I’ll pass

them on to you.

Liz

From: [mailto: ] On Behalf Of Colleen

Sent: Friday, June 01, 2007 2:21

PM

Subject: Hip Injections /

Hip Replacements

Hi-

Caitlin has been having severe problems with her hips this

spring. Recent x-rays revealed late stage osteo, as well as avascular

necrosis. Too many years of severe inflammation and too many years of

prednisone. Both the rheumy and the ortho advised she will

need double hip replacement. Because she is only 9 and quite small (48

inches, 52 lbs), we were hoping to put it off until she is at least

12. Even that seems frighteningly young to me! However, they

warned me that the pain will progress to the point where she will stop walking

and get in a chair - and we will have to take action.

We are hoping to buy some time with hip injections. The doc

thinks we may buy up to 15 months of enough pain relief to maintain

mobility. I just wanted to see if anybody has had experience with this...

if so, was it done under general anesthesia or local... and did it work?

Also, for those that have experience with joint replacement, some

advice on the best way to go about that.... and does anybody have a story about

a child this young having hips replaced?

I know I don't need to add this..... but this whole thing STINKS!

I won't bore with the details, but these are some of the longest, pain filled

nights Caitlin has ever had - and I feel more helpless than ever. Because this

time, making the inflammation go away won't stop the hurt....

Thanks for the ears-

Colleen (mom to Caitlin, 9, systemic)

Get

your own web address.

Have a HUGE year through

Small Business.