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Sjogrens Topics => Living With Sjogren's => Topic started by: jonnell on May 06, 2009, 03:56:39 PM

Title: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 06, 2009, 03:56:39 PM
Hi everyone wanted to let you know Im making another trip to Dupont tomorrow not for Jenna but for her big 16 year old sis who we found out this weekend has severe scolosis of the spine.  She is to old for the brace and they think surgery might be necessary.  I wondered if any of you have any experience with this.    She is in alot of pain and now the lower back is swelling.  We have a appointment with a orthopedic doctor so we will see what happens    Hugs and Kisses   Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Scottietottie on May 06, 2009, 04:24:11 PM
Hi Jonnell  :)

My - you are having your problems aren't you!!

I have no personal/family exxperience of scoliosis but I'm a youth worker and a 15 year old I used to work with had an operation for it. The operation sounded horrendous as it involved a metal rod being inserted down the length of her spine. So saying - this amazing young woman was out and about within days of being discharged from the hospital. She was adamant it was not going to impinge on her social life. She showed us her back when it was still stitched up. It looked painful but she considered it bearable. Maybe it felt better than it had before - I don't know.
Anyway - it healed well. She's the life and soul of any party. Friends a plenty and a special boyfriend and wonderful posture!

Good luck with the appointment.

Take care - Scottie  :)
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 06, 2009, 04:45:57 PM
Scottie,  Yea and Kathryn was always the healthy one never anything wrong.  She has been complaining of back pain for awhile but we thought it was from the back pack she was carrying in school.  I thought they were suppose to screen for that in school.  Oh well hopefully its not as bad as the peditrician said  Im praying.   Hugs and Kissess  Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: lynnmarie219 on May 06, 2009, 04:58:53 PM
I hope its not as bad too and that she doesn't need to have surgery! Maybe they will order some physical therapy or other treatment plan for her to try first.

I have scoliosis in my back as well but not to the extent that I would ever need surgery...I go to the chiropractor for monthly adjustments and it helps me with the pain.


Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: KYMOM on May 06, 2009, 06:35:27 PM
Jonnell,  Good luck with the appt for Kathryn tomorrow.  Sorry that this was brought on your family with everything else that you are going through.  Let us know what the doc says.  Roxanne
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: irish on May 06, 2009, 08:37:20 PM
Jonnell, Yes, they are supposed to screen for scoliosis in school. However, there are so many ways that the bones can tip, etc that many times the hand down the spine routine doesn't show any evidence. It takes the Cat Scans, etc to show up the areas.

I took some pediatric nurses training many(and I mean many) years ago at one of our state hospitals that specializes in orthopedic surgery for the kids. It is amazing how fast these kids snap back from the surgery. One of my friends has a daughter who had to have the surgery and it was invasive but she did very well and doesn't havae all the pain. Generally, if the surgery isn't done the curvature just gets worse and can really make daily activities of living hard. Good lyck with your daughter. Irish ;D
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: wednesday mc haggis on May 07, 2009, 01:25:43 AM
jonnell

so sorry all this is happening to your family, one thing after another.

I agree with irish, i worked 6 months in  in orthopaedics,during my training,  and kids ang young ppl seem to bounce back in remarkable ways, the surgery seems to make quality of life post op so much better, and in cases i seen which i know wasnt that many was very successful.

  thought with you all for the trip to dupont, and love and light you you all

T x
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Katybarstool on May 07, 2009, 02:23:21 AM
Hi Jonnell

Let me just add my good wishes for a successful trip to Dupont with Kathryn.

Kathyx
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 07, 2009, 03:28:35 AM
Thank all of you for the well wishes  it makes me feel so much better.  Love to you all     Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Chickpea on May 07, 2009, 06:37:24 AM
Hi Jonnell

Wow - something else for your dear family to deal with!  I'm glad we're able to offer some support and love.

Thinking of you - Chickpea

ps how are YOU feeling about this latest crisis?  Are you getting enough rest?  Eating well and sleeping?  I'm worried about you.
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: missyb on May 07, 2009, 08:13:52 AM
hope it's going ok for you all, and hope you all stay away from the Dr's soon :)
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: kim31072 on May 07, 2009, 08:27:36 AM
My daughter was diagnosed with scoliosis last fall(she was 8 then)her curve is at 16 degrees now...we monitor her every 6 months to make sure the curve is not progressing.If it starts when she hits puberty they will brace her.If your daughter is still in puberty or growing she is still a candidate to brace.It will not correct the curve that is allready there only stop its further progression.

Surgery is an option but depends on how much more growing is left..they wont do it when more height is expected as that can cause further damage.The fusion helps to prevent further curvature...sometimes a brace can help there are many stories of adults wearing them  http://www.spine-health.com/conditions/scoliosis/scoliosis-surgery  . If the curvature continues without intervention it can cause heart and lung issues.


I hope you get a good ortho dr(find one that specializes in scoliosis)and she hears some good news today and gets help with the pain.The one thing I hate is the drs say its not painful until its a bad case but all the stories/testimonials I have read from people that have it say they always remember it hurting even when the dr said it shouldnt.I worry for my daughter and hope that she never has to experience it.

Take care

Kim

Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: harrigan on May 07, 2009, 09:50:25 AM
Oh Jonnell - when it rains, it's a monsoon for some people!  Sorry you are all having so much to deal with right now.  Really hope Kathryn gets some excellent treatment and care.  As Chickpea says, hope you are finding the time and space to look after yourself too.  It's hard with so many people depending on you.  Thinking of you XX Ailsa
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: lighthouse33 on May 07, 2009, 03:35:10 PM
I don't know if you would want to travel to North Carolina but Dr. Hey is well know here.  He does the scolosis surgery.  Here is a link to his website.  He has a blog and patient profiles etc.:

https://www.heyclinic.com/index.asp

He did surgery on my dad earlier this year for cervical spondloytic myelopathy.  The surgery was successful, but it will take up to a year for the numbness to disappear from his hands.  Then we will see if he will ever play golf or carve again.  If there was too much nerve damage then the numbness etc. could be permanent.  We are hoping for the best.

Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 08, 2009, 03:35:17 AM
Well some good news for a change.  Kat doesnt have scolosis(got to love our local peditrician)  She has a condition with her back from poor posture and strain on her back from bookbags etc in school it causes her to have pain and has a hump on her back so they referred her for physical therapy to strengthen her muscles in her back.  I dont know if any of you have ever experienced this.  Thank you all for your well wishes and prayers.   Hugs and Kisses  Jonnell Jenna and Kat
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: HL in NY on May 08, 2009, 04:49:45 AM
Great news!!!

I'm so pleased to hear this (And I'm sitting up straighter too)

You must be so relieved.

Heather
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Scottietottie on May 08, 2009, 06:28:52 AM
Hi Jonnell  :)

Well - that must be a weight off your mind! I'm so glad she doesn't have scoliosis. I was always telling my daughters not to slouch when they were at home. One has a pretty straight back - but the other doesn't. Too much time slumped over a computer I think.  Maybe our kids need 'deportment classes'. They could walk around with books on their heads!

I hope the physical therapy goes well. I know I've benefitted from various physio exercises over the years - and so did my youngest daughter who had lower back problems.

Take care - Scottie  :)
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Chickpea on May 08, 2009, 07:11:05 AM
Hi Jonnell

What a relief!  I couldn't bear the idea of another serious health issue on your shoulders.  As I read your post I could feel myself sitting straighter.  It's so easy to get into bad habits.

Now what about the other issue we raised?  How are you?  Are you taking good care of yourself?  I wondered whether there is support offered for carers in your community?  Where I live (Brighton, UK) there are all sorts of groups offering practical and emotional support for carers, from help with hospital visits to massage sessions for the carer.

Take good care of your dear self - Chickpea
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: harrigan on May 08, 2009, 12:42:16 PM
So pleased to hear the news that no op is needed and that Kat's problem can be helped by some lifestyle changes and strengthening exercises.  It's still going to mean another round of appointments for you to manage though and for that you have my sympathy!

These school bags are a real concern - I see pupils lugging kit, laptops, books etc round with them all day.  I have a lock-up cupboard for my Y7 form and they come in and out all day to get their stuff, but at least they go home upright!

Really hope life settles down for you all for a bit Jonnell! xx Ailsa
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 08, 2009, 04:36:35 PM
Chickpea,  Im doing ok, little tired with all these appointments.  Very thankful that kat doesnt need surgery.  But I need some advice.  All Jennas symptoms are gone from the vomitting, diahrea, and bad stomach pains,  wonder if I should try the plaquinil again at a half of half which is 25 mg a day and will that do anything for her symptoms. I know I should call her Rhumy but they dont like to admit that meds make you sick and they have never given someone so young plaquinil.   Hugs and Kissess   Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: lynnmarie219 on May 08, 2009, 06:30:02 PM
Great news about Kat! I have been in PT on several occasions and it has always been a great help to me...I have always benefited from it!


As far as starting the plaquenil again with Jenna.....I would notify her rheumy and ask.....I'm sure they would want to be informed and follow her through this...especially since she is so young!


Hugs to you all.....
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Patze on May 09, 2009, 03:56:17 AM
That is great news!  Whew, you have to be breathing again!!!

And Lynnmarie makes a good point, please check with the rheumy before starting Jenna back on Plaquenil, you don't want any suprises (I think you've had enough for a few years!).

Take care and I'm sending you a giant hug -


( ( ( ( ( ( ( ( ( ( H U G ) ) ) ) ) ) ) ) ) )


Patze
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: KYMOM on May 09, 2009, 06:29:20 AM
You must feel a great sense of relief.  The backpack are unbelievable.  I can't even carry my teens packs from school.  There classes are so spaced out much of the time that they don't have time to go to the lockers.  When you start the plaquenil again let us know how Jenna is doing with it.  Happy to hear that she is feeling better from the bug.  Hugs to both girls. Roxanne
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: missyb on May 09, 2009, 07:27:55 AM
Seeeeeeeeeeee mom was right, you thought it was the back pack to begin with!
How about one on wheels?
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: JannaLee on May 09, 2009, 01:23:38 PM
Jonnell,

I just got back from a short trip and found this thread!  It is wonderful to hear Kat is going to be okay!

Thinking of you, sweetie!
Janna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Chickpea on May 10, 2009, 02:06:14 PM
Hi Jonnell

It's good to hear that Jenna's symptoms have gone because nausea and a bad tummy can make you feel really low. 

I agree with Patze and Lynnmarie that it makes sense to discuss what's happened recently with her rheumy at Dupont.  They'll be keeping notes on how she's reacting to her new treatment and this will be really helpful to them.  No doubt they'll have good ideas about how to help her adjust to Plaquenil again, and how to introduce the dose slowly. 

Hope she continues to get over her bad tummy.

Love to all the family - Chickpea
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 10, 2009, 05:35:55 PM
She is over the tummy but now complaining of bad leg pains,  it was very hot here for 2 days she had a school trip I chaparone the trip but it about killed her.  Does anyone have any suggestions about how to make these school trips better for her?  She has one this week to the zoo that one will be a lot of walking and shes going with dumb a  dad.  Thank God I have the beach trip she would be a lobster and in major pain if dad went on that one.    Hugs and Kissess  Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Scottietottie on May 10, 2009, 05:48:06 PM
Hi Jonnell  :)

Do make sure when she's on these trips that she is using high factor sunscreen and is covered up from the sun as well. The sun can make all our aches and pains worse. I make sure my arms and legs are covered and usually wear a big floppy hat too.

Take care - Scottie  :)
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: JannaLee on May 11, 2009, 01:55:22 PM
Jonnell,

I've found the plaquenil has helped me the most with my joint pain (in feet, legs and hips.)  It will be a while before Jenna's plaq. gets to a therapeutic level and she will feel a bit better. 

All I can advise is... give her to Dumb A Dad as rested as possible and beg him to use the sunscreen.  Maybe he could give her some Children's Advil (or whatever brand they make Naproxen in children's dose.)

I hope you can get her leveled out during the summer so when she starts school next fall, she will be feeling better.

Janna



Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 11, 2009, 02:48:43 PM
Janna,  I love you you always make me laugh.  How have you been feeling?  Hope everything is going Ok for you and your family  Happy Mothers Day by the way.   Lots of love, hugs,  and kissess    Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: JannaLee on May 11, 2009, 07:18:29 PM
Thanks Jonnell!  I'm not feeling my best.

My son is graduating from college this Saturday afternoon and commissioning into the US Air Force Saturday evening.  Then we have a wedding the next day.

I have a TINY bit of anxiety about getting it all done.  There is food to be cooked and beds to be made and floors to be swept....but I'm going to focus on rest and if it doesn't all get done, that's okay.  The important thing is watching my brilliant son celebrate his achievements!

The floors and beds can be dusty and cooked food isn't all it's cracked up to be!...right?!

Love to you and your kidlets!
Janna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: lynnmarie219 on May 11, 2009, 08:22:37 PM
Janna,

There is nothing wrong with a little dust and raw food! ;)

Congrats to your son on his graduation this coming weekend! You should be so proud and the focus should be on him like you said and not on all the things you need to get done (or didn't get done).

Tell your son we are all proud of him too and thank him for his upcoming service!
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: JannaLee on May 11, 2009, 08:27:36 PM
Lynnie, I love you so much!  Thank you!
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: jonnell on May 12, 2009, 03:29:30 AM
Janna,  Your son is very handsome,  you have a lot to be proud of.  Enjoy your time with him, And RELAX(yea right) Hugs and Kissess    Jonnell and Jenna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: wednesday mc haggis on May 12, 2009, 09:07:58 AM
awwww janna, listen the floors wont be noticed ppl will be too busy look at that lad of yours lol, all the best thoughts and wishes with you that it all goes well, and congratualtions to your son, and you for raising him se well :)

T x
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Chickpea on May 12, 2009, 11:05:01 AM
Janna dearest - just imagine we're all there with you cooking and sweeping and making the beds.  I know we'd love to be able to help out but we'd probably be exhausted after half an hour and no use at all!

I agree with the others:  what people will remember is the loving welcome they receive, not whether the floors are shining. 

What a lot of joy in one weekend!  Can't wait to hear how graduation goes.  And the wedding.  And photos of both?

Thinking of you - Chickpea
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: JJ on May 12, 2009, 02:09:43 PM
My prayers are with you all.

JJ
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: JannaLee on May 12, 2009, 04:03:28 PM
My dear friends!  I think of you all so much anyway, it will be easy to feel your loving support this weekend!

Thank you so much!

Janna
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: KYMOM on May 12, 2009, 06:31:07 PM
Janna, Congrats to your son.  Hope the sun is up and smiling on his day.  Roxanne
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: harrigan on May 15, 2009, 01:10:11 PM
Janna, I hope you are the proudest mum around and that you all have  the most perfect time.  You will be in my thoughts.  xx Ailsa
Title: Re: Jennas big sis goes to Dupont tomorrow
Post by: Chickpea on May 17, 2009, 05:52:42 AM
Hi Janna

Thinking of you today, hoping yesterday was fun and today goes smoothly.

Love to all your family, and loads to you - Chickpea