First visit

March 13, 2001

first visit

> Hi

> My name is Lydia and I have a 15 year old with OCD. We have been

> battling different symptoms for years but this year it was finally

> diagnosed. I have a extra complication that my husband who is a

> recovering alcoholic doesn't think we have a proper diagnoses. He is

> working his own program and is still pretty new at it but has made

> progress. I am having a hard time dealing with his personal defects and

> helping my daughter deal with her ocd. He doesn't believe that it is

> real. She is manipulating us. Fortunately we have a very good therapist

> in my mind and in the mind of my daughter Amy. But not my husband. He

> thinks he has all the answers. I don't think so. He is going to find

> someone to do family counseling. That would be fine with me. It is very

> frustrating to deal with him. I can't really talk to him about this

> issue at all and it would be helpful if he would be more understanding

> but that does not seem to be in his nature right now. I am not sure

> where this will go but I do know that we will continue to see the

> therapist and will continue with the Celexa that has seemed to ease her

> anxiety. My husband thinks that she just has seperation anxiety and that

> we just have to be firm with her untill she just gets over it. That

> doesn' t work. We have seen other therapists who try to use consequences

> to change the behavior and that didn't work either. It caused more anger

> and the symptoms just seemed to get worse. I feel all alone right now

> but I have to be strong for Amy and myself. I am letting my husband fend

> for himself right now and he can if he wants look for more information

> about therapies and conseling. We have only started on this new road

> since Feb. 7,2001. That is hardly enough time to give it a chance. My

> daughter is not in school right now and it is a concern with us both but

> we are working with the school and Amy is keeping up pretty well. Thank

> you for listening and I will read all your letters and appreciate your

> sharing.

>

> Lydia

>

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March 14, 2001

Hi Lydia and welcome to the group. From your post, your daughter is one of

the lucky ones in that it you have found a competent therapist for her.

You are right that she is just getting started in therapy, and perhaps your

husband will become a believer as he sees the improvement in her symptom

level.

I am sorry to hear of the disconnect between your husband and yourself.

Judging by the many posts about this to the list these past two years, it is

very common for one spouse to take the reins regarding the child's

treatment, and the other to remain in denial for (sometimes a very long)

period of time. This is the situation in our home and in many others as

well. That your husband is new in his recovery program is probably

complicating his ability to be a positive force in his daughter's treatment

at this time.

Amy is extremely lucky to have a wise and caring mother looking out for her!

:-)

Again, welcome.

Kathy R. in Indiana

> ----- Original Message -----

> From: " doug r tillinghast " <dlatill1@...>

> > My name is Lydia and I have a 15 year old with OCD. We have been

> > battling different symptoms for years but this year it was finally

> > diagnosed. I have a extra complication that my husband who is a

> > recovering alcoholic doesn't think we have a proper diagnoses. He is

> > working his own program and is still pretty new at it but has made

> > progress. I am having a hard time dealing with his personal defects and

> > helping my daughter deal with her ocd. He doesn't believe that it is

> > real. She is manipulating us. Fortunately we have a very good

therapist

> > in my mind and in the mind of my daughter Amy. But not my husband. He

> > thinks he has all the answers. I don't think so. He is going to find

> > someone to do family counseling. That would be fine with me. It is

very

> > frustrating to deal with him. I can't really talk to him about this

> > issue at all and it would be helpful if he would be more understanding

> > but that does not seem to be in his nature right now. I am not sure

> > where this will go but I do know that we will continue to see the

> > therapist and will continue with the Celexa that has seemed to ease her

> > anxiety. My husband thinks that she just has seperation anxiety and

that

> > we just have to be firm with her untill she just gets over it. That

> > doesn' t work. We have seen other therapists who try to use

consequences

> > to change the behavior and that didn't work either. It caused more

anger

> > and the symptoms just seemed to get worse. I feel all alone right now

> > but I have to be strong for Amy and myself. I am letting my husband

fend

> > for himself right now and he can if he wants look for more information

> > about therapies and conseling. We have only started on this new road

> > since Feb. 7,2001. That is hardly enough time to give it a chance. My

> > daughter is not in school right now and it is a concern with us both but

> > we are working with the school and Amy is keeping up pretty well. Thank

> > you for listening and I will read all your letters and appreciate your

> > sharing.

March 23, 2004

Jeri,

I've had nurse practitioners tell me dumb things before, too, about

orthopedics. Yesterday when I called to make a follow up appt. with

my spine surgeon, the scheduler said that because I hadn't been there

in over 1 1/2 years, I'd be scheduled with the N.P. I gently told

her that the O.S. had previously told me that the spine surgery I

need is the most complex one that he does, so I really don't want to

take information about it from anyone but him. She fortunately,

then, didn't give me a hard time about letting me see just him, but

she did have to go ask someone how to make her computer system

accommodate my request.

Don't want to offend any Nurse Practitioners, though. I've seen some

really good ones in other fields. Especially for a brand new problem

that I know nothing about, I am happy to take preliminary info. from

the nurse practitioners, but when it comes down to the nuts and bolts

of someone cutting up my body, I definitely want to look that surgeon

in the eye to get his answers on every single one of my questions.

It's great that you felt prepared by this group for what the doc told

you, Jeri. Does your doc have a good deal of experience doing

Harrington Rod revision surgeries? When you see him again, I'd

definitely ask him how soon other patients similar to you have been

able to go back to work. I have to remember to ask my doc that,

too. Good luck with the CT scan and MRI, and hope you will post how

they go for you,

loriann

March 23, 2004

Jeri - I do not personally think I could be back at work now, and I am exactly 2

months post op. My opinion may change at 3 months - ask again then and I'll let

you know.

>

> From: " giovanni502001 " <jtroia@...>

> Date: 2004/03/22 Mon PM 07:04:22 EST

>

> Subject: First Visit

>

> Hi Friends.

> A funny thing happened to me while waiting to see the doctor today. A

> nurse practitioner came in to see me, and asked a bunch of questions.

> She got a little perturbed when I said my pain is BOTH my lower

> back/legs (8 weeks of sciatica, now subsided) AND my neck/shoulders.

> SO, I told her about my Harrington Rods and that, from research I've

> done, I am pretty sure I have some degenerative disk problems below

> the fusion. The expression on her face changed from slightly

> perturbed to smug! She basically told me that scoliosis surgeries

> today STILL leave the lowest few vertebrae unfused for movement...

> and that I was probably wrong. (At least that was the general tone.)

>

> So, when Dr. Tribus (adult spine degeneration/scoliosis specialist)

> came in the room and shook my hand, the first thing he said was that

> I am RIGHT... arthritis in the unfused vertebrae. In fact, I have one

> disk that's completely compressed on one side (bone on bone) and

> another that's headed in that direction. He described the recommended

> surgery without the terms " flatback " and " revision " and " osteotomy " ,

> but thanks to this group, I knew that he meant exactly those

> procedures. When we changed focus on the Xray from the lower back to

> the shoulder region, I stepped back. My Harrington rod (the one with

> just one hook on top and one on the bottom) is broken at about

> shoulder blade level. The separation is impossible to miss, the top

> piece out of alignment with the bottom piece by 1/4 " to 1/2 " !

>

> When he asked me to go home and think about if I wanted to be

> followed on a yearly basis or get this corrected soon, I said I

> didn't need any time to decide. I'm scheduled for a CT scan and MRI

> (different parts of the spine show up better on one or the other

> scan) on April 22 and follow up appointment in early May. Because I'm

> a substitute teacher hoping to get a permanent job, the timing should

> be good. Do you all think it's probable to go back to work after

> about 2 months?

>

> Now that I know the rod is broken, I can FEEL it. It's the spot I

> refer to as my " burning spot " for at least the last 10 yrs. I suppose

> that means the break happened at least that long ago.

>

> Whew! I'm ready to get this fixed. I welcome any and all comments

> and suggestions. Thanks to everyone ahead of time. Jeri

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

March 17, 2011

Thanks to everyone on you good wishes and thoughts on our first appointment. I

thought Dr. was great, and extremely knowledgable. She said Amelia had

arthritic changes in her knees and ankles. She also has scoliosis and a leg

length discrepancy. She also has some decreased muscle mass in one of her legs,

which can go along with the arthritis. She ordered a lot more blood work, and

started her on Clinoril. I am praying this works for her. We have another

appointment in 2 weeks, right before her 8th grade trip to Washington D.C.,

which I am hoping she can go on. I am a chaperone, so I will be there. The

appointment and blood work took a lot out of her, though. She is still in bed

and had to miss another day of school. Anybody out there dealing with severe

fatigue, and misssing school?

March 17, 2011

Fatigue definitely can go along with the disease. Hopefully the meds getting

in her system will help with that too. Glad you liked Dr. and it was

worth the trip. Keeping fingers crossed for you that she is on the right

path and will get relief soon.

On Thu, Mar 17, 2011 at 9:42 AM, <danmanley47@...> wrote:

>

> Thanks to everyone on you good wishes and thoughts on our first

> appointment. I thought Dr. was great, and extremely knowledgable. She

> said Amelia had arthritic changes in her knees and ankles. She also has

> scoliosis and a leg length discrepancy. She also has some decreased muscle

> mass in one of her legs, which can go along with the arthritis. She ordered

> a lot more blood work, and started her on Clinoril. I am praying this works

> for her. We have another appointment in 2 weeks, right before her 8th grade

> trip to Washington D.C., which I am hoping she can go on. I am a chaperone,

> so I will be there. The appointment and blood work took a lot out of her,

> though. She is still in bed and had to miss another day of school. Anybody

> out there dealing with severe fatigue, and misssing school?

>

--

Moy

jaimelynmoy@...

*Need graphic design work and want to help a great charity? Money raised

through my freelance graphic design will be donated to the National

Psoriasis Foundation. Together we can get one step closer to ending

psoriasis and psoriatic arthritis. www.walkwithandy.com*

March 17, 2011

Dr. is a wonderful doctor and has made such a difference with my son! I'm

so glad that you got the answers you were looking for and are on the right path

to helping her feel better...but also sad for the diagnosis too. It is such a

hard thing to hear as a parent, even though you knew the diagnosis in your

heart. Nobody wants that terrible news that their child has JRA!

I know that leg length discrepancy and decreased muscle mass are things they

always check for with my son. His knees and ankles are really affected as well.

That it so painful!! We will pray for your daughter to start seeing results

from her meds right away and that she is on the road to being pain free soon. I

hope she can make her Washington D.C. trip! I know my son had a trip to Lansing

when he was in 4th grade and was having so much pain and fatigue. They brought

a wheelchair along because there was way too much walking and that helped him

enjoy the fieldtrip so much more. If she's feeling up to making the trip, maybe

a wheelchair is all she needs to help her get around a little better. Is that

something your daughter would be willing to do? I'm sure the chaperone or even

her friends wouldn't mind pushing her. It's just a thought...

I hope she feels better soon!

( 12, Poly)

From: danmanley47@...

Date: Thu, 17 Mar 2011 13:42:54 +0000

Subject: First visit