New member

Report post · October 27, 2010

I was thinking I remembered Chuck saying wait a few hours for calcium

but I'm not really sure. Chuck???

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20new%20member>

> westieabbey <westieabbey>

>

> Tue Oct 26, 2010 5:08 pm (PDT)

>

> ,

>

> Is it okay to take Calcium an hour after taking Levothyroxin? No one

> told me to wait a few hours.

>

> Barb

Report post · October 27, 2010

Wouldn't you think a doctor would tell us this? I'm so glad you did

Chuck. I've been taking calcium with vitamin D an hour after Levothyroxin,

since I was told to wait an hour to eat, and take the calcium once with a meal

in the morning, and once with a meal at night. Now I guess I'll take it

with lunch and dinner.

Thanks,

Barb

In a message dated 10/27/2010 6:54:27 P.M. Eastern Daylight Time,

gumboyaya@... writes:

On 10/27/2010 9:43 AM, wrote:

> I was thinking I remembered Chuck saying wait a few hours for calcium

> but I'm not really sure.

Yes, at least four hours. Same for iron and magnesium. These three form

complexes that immobilize the thyroxines. And, they will do it in the

blood stream, not just before absorption.

Chuck

Report post · October 27, 2010

On 10/27/2010 9:43 AM, wrote:

> I was thinking I remembered Chuck saying wait a few hours for calcium

> but I'm not really sure.

Yes, at least four hours. Same for iron and magnesium. These three form

complexes that immobilize the thyroxines. And, they will do it in the

blood stream, not just before absorption.

Chuck

Report post · January 5, 2011

,Welcome to the group. I'm glad you found us. You have actually found a soft place to land. Lots of support, lots of knowledge and information and a wide range of people in all stages of their walk with hep C. You will hear from people who have just been diagnosed, some who have been aware of their hep C for awhile, some treating, some not treating, and a few of us who have gone thru treatment already and come out on the other side.

My name is Teri. I was diagnosed in 2004. I went thru treatment in 2005-2006 for 48 weeks. For me treatment worked. I am clear of the Hep C virus.

It's easy to get scared about hep C. It's a very intimidating virus. There is a lot of stigma surrounding it as well as myths and just plain bad information. Some of the bad information out there is enough to scare most people silly.

I had about 25 years worth of damage to my liver by the time I was diagnosed. I too thought I got mine from a blood transfusion. The timing worked. It was the only thing that was major that fit the timeline. That is until I realized all the ways we could have been exposed to this virus. The dentist office, getting our ears pierced in the mall, immunizations when we were kids (they re-used needles and syringes back then.. there was even a shot-gun) the possibilities are endless. I try to tell everyone now to not worry about how they got this virus. It's really not important. What is important is what you do now that you know you have it.

Now, to set your mind at ease a little bit. More people die with hep C than from it. Do me a favor, read that line again. It's important. Granted, hep C can make you pretty sick and uncomfortable, mostly fatigued, but for the most part, people die with it. Many people will never even know they have it. It's a very slow moving virus.

You mention not having a doctor to tell you what to do next... Do you have a doctor at all that you see regularly? I ask this because even though you have decided not to treat, your hep C needs to be monitored. The damage it does to the liver is slow moving but it can accelerate. It's best to be followed up by someone regularly. The fact that you don't feel to good at the moment may be a reason to get checked a bit further. Have you had a biopsy done? Do you know the extent of your liver damage and whether or not treatment would be beneficial to you?

Are there questions you have about treatment that have kept you from exploring that route? I'm pretty well versed on the treatment end of this if you have questions.. now don't get me wrong, I am not strictly a pro-treatment kind of person. Everyone has different reasons for why they are looking at treating or not treating but I have found that some people have chosen not to treat because of information they may have heard about treatment that may or may not be accurate. If you have any questions, there are many of us here who have gone a round or two with treatment and we would be more than happy to answer any questions you might have.

The only dumb question is the one you don't ask.

There are many links in the library for this group. Don has spent a lot of time gathering information on all aspects of Hep C. You'll find a lot of useful information there. Here is the link to the page with all the info:

/links

Let us know what we can do to help... you're going to find quite a few people chiming in to say hello rather quickly!

Hugs,Teri

On Wed, Jan 5, 2011 at 10:34 AM, hilarym250 <hilarym250@...> wrote:

Hello everyone,

I'm new to this, thought it's about time I joined because I live alone and not in a support group.I scare myself silly sometimes with what I read so hopefully someone will be able to reassure me from time to time.

I've known about this hep c for 15 years but have had it 25 years from a blood transfusion...I've chosen to go down the alternative route...but it's scary not having a doc telling me what I should do next! Don't feel too good at the moment.

Also I've never found good info on diet and recipes...the blandness of steamed fish and chicken puts me right off food.

Bye for now

Report post · April 4, 2011

Hi Dave,

I can relate to your experience. Here in a few words what solved my problem. I

followed the candida diet (no sugar, no yeast, no gluten, no vinegar, no

milk/cheese ect...) and took Chlorella (a high quality one, you know it's good

when your stools turn green) 3000 mg 3 times a day, plus black garlic and

cilantro as much as I could. These supplements took out the heavy metals that

are the main cause of yeast infection. Yeast overgrowth in just a symptom, the

underlying cause is intoxication. Take something to support your kidneys and

liver at the same time. After doing this for 3 months I was able to eat anything

without any problem!

Dan

>

> Hi,

> I'm a 30 year old male and I've experienced certain unrelated

> 'experiences' throughout my life which really began with an awful breath

> problem and a coating on my tongue. Of course I've been to the dentist and

> the doctor but have always come away with with no practical help.

> In a desperate attempt at solving my own problem I looked at a couple of

> websites with one particularly helpful one at

> http://www.tau.ac.il/~melros/faq/36.html , This particular page mentioned

> the possibility of yeast infection.

> I started reading about Candida and suddenly realised that my 'experiences'

> could possibly be linked.

> My experiences are:

>

> Terrible breath problem

> Occasional difficulty in swallowing

> Fuzzy headed - feels like I'm not really here

> Unable to gain high energy

> Mood swings

> Bloated feeling after eating

> Insomnia

> Unable to catch up with sleep - constant tiredness

> Depression

> Lack of concentration

>

> Could this be Candidiasis?

>

> I'd like some professional advice before taking any further steps but

> unfortunately seeing my doctor would be a complete waste of time as I have

> seen him for a number of things and all I get is an unhelpful opinion.

>

> Any advice greatly appreciated

>

> Oh, I'm in the Surrey area in the UK.

>

> Thanks

>

> Dave

>

Report post · May 4, 2011

I am a new member to this group and quite honestly this is the only group I have ever joined and am not quite comfortable yet. I had a Harrington fusion in 1967 to correct a double curve, at the age of 13. It was performed at War Memorial Childrens Hospital, London Ontario by Dr. Kennedy. This surgery served me well, but after 30 years I started to experience symptoms I had not experienced before. The most notable was a tendancy to tip forward. Onto the web I went and much to my surprise, and perhaps dismay, there was article, after article describing what I was experiencing. Hip and leg pain, pins and needles in the foot, searing heat in the upper thigh, the drop to the knees sharp pain as the discs below and above the fusion deteriorated and the fatigue. The mind numbing

fatigue from coping with these symptoms and the loss of sleep from the persistence of the symptoms, perhaps even worsening, when in a reclining position. But much to my surprise the symptoms were the least of my problems. The real frustration is finding someone who recognises this syndrome. I still to this day don't think the family physician has done much research on the subject even after presenting him with the research that I did on my own. However he has supported any request I had for referrals, and I was fortunate enough to have initially been sent to a physiotherapist that did recogize the flatback and was able to suggest names for perhaps referral. He also recognised the limitations he had in helping relieve the symptoms. So I have been to several specialists, one telling me to come back when I could no longer walk, one eager to do the surgery within a few months, and one telling me perhaps in 5 years. That being 6 years ago. I have

been to a physician from whom I received an injectable cocktail to the lower spine (3x) for which there was little or no relief. I have been to a neurologist who asured me there was help when I was ready, but for now I am coping well. I did go on a CPP disability for which I was thankful to be accepted immediately. However, believe me I would much rather be working as I worked in the health field and miss it terribly. I am very interested in how this type of syndrome affects each individuals personality, or if psychologically. Certainly I could understand how easy it could be to become depressed. I am also interested in coping skills others have developed.

Thanks D.S.

Report post · May 4, 2011

Deb,

Welcome to the group. Your symptoms sound very similar to mine before

I had my revision surgery two months ago. Since your last set of

consultations with surgeons was several years ago, I would consider

trying this route again. I'm assuming that your condition has

progressed since then. You should also keep in mind that the field is

likewise progressing.

I completely understand where you are coming from with respect to your

concerns about depression and coping. I never suffered from depression

until after my condition worsened. It's difficult to keep your spirits

up when you never seem to be able to find the solutions or even proper

relief from the pain caused by your condition. I did go to therapy for

a bit, and also take an antidepressant to help manage those feelings.

But the thing that helped keep my spirits upholds than anything else

was when I took up a creative hobby -- jewelry making. I am able to

get lost in the design process, and it keeps my mind focused on

something positive rather than all the horrible symptoms I had been

experiencing.

I wish you luck in finding solutions that work for you.

Report post · May 5, 2011

Deb,I think many of us when confronted with yet again an uprising of our scoliosis, find ourselves depressed and sad, and even angry, that all this has come back years or decades later to bite us in the ass again. I sure did! I got diagnosised with Flatback in 2000, after 15 years of knowing something was terribly wrong, and saw 20 some doc's over those 15 years looking for answers. Luckily today, Flatback is far more recognizable, to most ortho's, and even most PCP's. Your story, alas is far more classic, but it now comes down to what you want to do and how you want to handle it.

Given you are in Canada, and the pace to surgery is slower for the most part there, if you are ready personally, I'd check out the Scoliosis Research Society page, just Google them, they have a doc locator there, look for docs with aging spine in their description.

For me once diagnosised, after living with Flatback for 15 plus years, I was done, and wanted it fixed, and I wanted my functioning life back, and worked with my surgeon towards that plan. I figured that it wasn't going to get better on it's own, I was getting worse by the day,and why not give surgery a shot.

While revision surgery for me, and yes it took more than one for me, gave me back a functioning life, it is something to consider fully, and do your homework, and know there is various levels of outcomes, all the way from painfree like I am, to those who are upright, but still have residual pain. It all comes down to are you willing to accept where you are now, with pain and disability, that will probably as time ticks on get worse, or do you want to pursue a surgical option in hopes of a good outcome. For me, acceptance wasn't an option, I had kids, and hubby, and I wanted to be back at life.

Coping, while either waiting for surgery, or waiting to decide, has some things that have helped others. Injections have worked briefly for some, not for me, but for some it gives some relief. PT gives some relief, as does swimming. Some do pain mgt, and get some pain relief from medications. Also core strengthening and keeping ones weight in check can help a bit.

This all can be depressing, and pain does affect mood, I was a flat out @#$%^, in the midst of it, you hurt, but also your mind hurts from the sadness of it all. If you see yourself there, get help.

The ball is in your court, and this is your body, and only you can decide. For me surgery gave me hope, just as it did when I was a kid. Does it suck that we had to confront this scoliosis mess twice, you bet, but, for a great deal of us, it was so worth the second battle, cause getting that pain gone or reduced, and getting our uprightness restored, is so worth the fight. Many get back to full lives, work and family, and truly to good outcome stories are far more often than when I had my revisions a decade ago.

I suggest reading member stories on the site in the FILES section, print info on Flatback there to show friends and family, so they get the scope of it. See more docs, or decide amongst who you have seen, and then make the ultimate decision if surgery is for you. Only you can decide. For me, surgery was my shot, and I took it. Some it takes far longer to get their brain wrapped around the idea, and to get their ducks in a row. I think for me that finding my surgeon, and knowing he was there to get me better, gave me the strength to proceed. It all felt right.

Do let us know as you go forward, if you have appointments, we can put them on the groups calendar, and we can be there to discuss with you their findings. Know many of us have been right where you are now, and get how tough it is.

Colorado SpringsOn Wed, May 4, 2011 at 10:16 AM, Deb Sinclair <dgsinclair50@...> wrote:

I am a new member to this group and quite honestly this is the only group I have ever joined and am not quite comfortable yet. I had a Harrington fusion in 1967 to correct a double curve, at the age of 13. It was performed at War Memorial Childrens Hospital, London Ontario by Dr. Kennedy. This surgery served me well, but after 30 years I started to experience symptoms I had not experienced before. The most notable was a tendancy to tip forward. Onto the web I went and much to my surprise, and perhaps dismay, there was article, after article describing what I was experiencing. Hip and leg pain, pins and needles in the foot, searing heat in the upper thigh, the drop to the knees sharp pain as the discs below and above the fusion deteriorated and the fatigue. The mind numbing

fatigue from coping with these symptoms and the loss of sleep from the persistence of the symptoms, perhaps even worsening, when in a reclining position. But much to my surprise the symptoms were the least of my problems. The real frustration is finding someone who recognises this syndrome. I still to this day don't think the family physician has done much research on the subject even after presenting him with the research that I did on my own. However he has supported any request I had for referrals, and I was fortunate enough to have initially been sent to a physiotherapist that did recogize the flatback and was able to suggest names for perhaps referral. He also recognised the limitations he had in helping relieve the symptoms. So I have been to several specialists, one telling me to come back when I could no longer walk, one eager to do the surgery within a few months, and one telling me perhaps in 5 years. That being 6 years ago. I have

been to a physician from whom I received an injectable cocktail to the lower spine (3x) for which there was little or no relief. I have been to a neurologist who asured me there was help when I was ready, but for now I am coping well. I did go on a CPP disability for which I was thankful to be accepted immediately. However, believe me I would much rather be working as I worked in the health field and miss it terribly. I am very interested in how this type of syndrome affects each individuals personality, or if psychologically. Certainly I could understand how easy it could be to become depressed. I am also interested in coping skills others have developed.

Thanks D.S.

Report post · May 5, 2011

Hello Deb

Are you still living in Ontario? If so, I was wondering who you have had consults with? I had revision surgery with Dr. at Toronto Western Hospital a year ago. I am doing pretty well although I haven't returned to work as yet. I work in the health care field as well as a nurse and because my work is so physical he said to take the year off. I see him at the end of this month and then will decide about going back.

If I can help you with any questions, let me know. You can email me privately if you prefer at juliehodgson04@.... I have names of other Docs in the Toronto area.

From: Deb Sinclair <dgsinclair50@...>Subject: [ ] New member Received: Wednesday, May 4, 2011, 12:16 PM

I am a new member to this group and quite honestly this is the only group I have ever joined and am not quite comfortable yet. I had a Harrington fusion in 1967 to correct a double curve, at the age of 13. It was performed at War Memorial Childrens Hospital, London Ontario by Dr. Kennedy. This surgery served me well, but after 30 years I started to experience symptoms I had not experienced before. The most notable was a tendancy to tip forward. Onto the web I went and much to my surprise, and perhaps dismay, there was article, after article describing what I was experiencing. Hip and leg pain, pins and needles in the foot, searing heat in the upper thigh, the drop to the knees sharp pain as the discs below and above the fusion deteriorated and the fatigue. The mind numbing fatigue from coping with these symptoms and the loss of sleep from the persistence of the symptoms, perhaps even worsening, when in a reclining position. But

much to my surprise the symptoms were the least of my problems. The real frustration is finding someone who recognises this syndrome. I still to this day don't think the family physician has done much research on the subject even after presenting him with the research that I did on my own. However he has supported any request I had for referrals, and I was fortunate enough to have initially been sent to a physiotherapist that did recogize the flatback and was able to suggest names for perhaps referral. He also recognised the limitations he had in helping relieve the symptoms. So I have been to several specialists, one telling me to come back when I could no longer walk, one eager to do the surgery within a few months, and one telling me perhaps in 5 years. That being 6 years ago. I have been to a physician from whom I received an injectable cocktail to the lower spine (3x) for which there was little or no relief. I have been to a neurologist

who asured me there was help when I was ready, but for now I am coping well. I did go on a CPP disability for which I was thankful to be accepted immediately. However, believe me I would much rather be working as I worked in the health field and miss it terribly. I am very interested in how this type of syndrome affects each individuals personality, or if psychologically. Certainly I could understand how easy it could be to become depressed. I am also interested in coping skills others have developed.

Thanks D.S.

Report post · May 5, 2011

, Thanks so much for your note. My surgeon thinks he can help me a great deal. Iâ€™ve had flatback for nearly 25yrs and have been unable to work for 15 despite having an RN and JD because I canâ€™t sit or stand for long at all. Dr. Kebaish shook his head and was obviously miffed that I hadnâ€™t been referred to him sooner as he is so sure the surgery will make a huge difference for me. I am fused from C1-T1 and will be fused from T11-S1 (now Iâ€™m fused from L2-S1) and have adhesive arachnoiditis so no one can say for sure what degree of disability Iâ€™ll have after surgery but Iâ€™ll be happy if I only get as far as being able to exercise without inducing tremendous pain so that I can keep any more muscle atrophy at bay. I know I will have increased pain for awhile after surgery because of my arachnoiditis, as well as post surg pain, but the fact that you are just 2mos out and can see youâ€™ll be able to return to work gives me great encouragement. I see my surgeon on the 18th for pre ops and a lengthy discussion so I will have a better idea of what to expect then. His secretary said he doesnâ€™t want PT until at least 2mos has gone by after surgery, and that too is when he allows driving, so I know Iâ€™ll be limited for awhile. Since getting on a huge dose of narcotics Iâ€™ve been able to do a daily walk of 1-2 1/2 miles and I hate to give that up, as it has been so liberating after many yrs of being unable, but l have to go forward in hopes of getting more of my abilities back, for my sake as well as my familyâ€™s. wrote a note that resonated with me this morn â€“ about the surgery representing hope for her. Thatâ€™s where I am. Even if I could only work part time or do volunteer work Iâ€™d be thrilled. Good Luck in your recovery! Kate

From: Curran

Sent: Thursday, May 05, 2011 1:12 AM

Subject: Re: [ ] New member

Kate,My surgeon explained to me that the surgery would greatly Reece oreliminate the pain in my legs, and would likely also result Indecreased pain in my lower back as well. For me, the pain in my legswas practically gone immediately following surgery.You can defInitely expect to be less functional didn't the initialweeks/months following the procedure. After that, the ultimatereduction in pain levels depends on a lot of factors, includingwhether all those years of nerve impingement caused any permanentdamage to the nerve or not.No surgeon can guarantee exactly what amount of relief the surgerywill give you. In my case, even though I'm only two months post-op, Ican already tell that when I fully heal, I will be in much bettercondition than pre-surgery.I was working right up until the week before my surgery, but myability to continue was hanging on by a thread. I have always plannedto return to work following surgery, and my surgeon estimated that itwould take 3-6 months. I'm at 2 months and am still on leave fromwork, but definitely still anticipate being able to return within thenext couple of months.Have you had these kinds of discussions with your surgeon yet? Whiles/he won't be able to guarantee an outcome, your surgeon should beable to give you his/her best judgment as to what you can expect.Best wishes,

Report post · May 5, 2011

Kate,

While some doctors do not do PT until a while after surgery, it seems

to me that going for walks is recommended, starting as early as when

you return home from the hospital. While you definitely won't be able

to walk those kinds of distances at first, you will not need to give

up your walks altogether. In fact, the fact that you've been walking

so much pre-surgery would probably benefit you greatly. For example, I

was not physically active before surgery, and so regaining strength

and endurance after years of inactivity will take a lot more work.

Your being physically active now will make that part of your recovery

so much easier.

When I finally made the decision to have surgery, i also experienced

that feeling of hope like you mentioned. After years of terrible pain

and no great solutions, the surgery represented a chance to regain my

functionality and decrease my pain. It's a tough decision to make

given how complicated all of our medical histories are, but if the

surgeons feel you would benefit from it, and you agree with them, it

can be a great option. For what it's worth, I am very glad that I had

the surgery.

If you ever want to chat one-on-one, feel free to email me offlist.

Report post · May 5, 2011

, Thanks so much for the encouragement. Iâ€™m pleased to make contact with you and would be happy for you to contact me offlist as well. Iâ€™m pulling for you to have a timely and complete recovery. Best, Kate

From: Curran

Sent: Thursday, May 05, 2011 6:36 PM

Subject: Re: [ ] New member

Kate,While some doctors do not do PT until a while after surgery, it seemsto me that going for walks is recommended, starting as early as whenyou return home from the hospital. While you definitely won't be ableto walk those kinds of distances at first, you will not need to giveup your walks altogether. In fact, the fact that you've been walkingso much pre-surgery would probably benefit you greatly. For example, Iwas not physically active before surgery, and so regaining strengthand endurance after years of inactivity will take a lot more work.Your being physically active now will make that part of your recoveryso much easier.When I finally made the decision to have surgery, i also experiencedthat feeling of hope like you mentioned. After years of terrible painand no great solutions, the surgery represented a chance to regain myfunctionality and decrease my pain. It's a tough decision to makegiven how complicated all of our medical histories are, but if thesurgeons feel you would benefit from it, and you agree with them, itcan be a great option. For what it's worth, I am very glad that I hadthe surgery.If you ever want to chat one-on-one, feel free to email me offlist.

Report post · May 7, 2011

Hi Deb -

We have lots in common - I also had my first surgery (Harrington Rod) at War

Memorial Childrens Hospital in London, Ontario in 1963 and Dr. Kennedy did

it! Do you remember a Dr. Rennie Brown? He's the one that worked with Dr.

Kennedy when I was there.

I had flatback - just like you, the first thing I noticed was the lean

forward, not to mention the pain that goes along with it but the one thing that

really bothered me was not being able to walk much. I tolerated it until 2007

and upon doing research into a surgeon that could help me, went to Ford

at Sunnybrooke in Toronto (I was told by the Ont. Scolosis Society that he was

the best!) He left me worse than I was! So, I sent my xrays and a letter to

Dr. Bridwell in St. Louis because he is talked about often on this site as being

one of the best. He looked at the xrays and had his secretary call and refered

me to a doctor who trained under him - Dr. at Western Hospital in

downtown Toronto. I had much more faith in him because he talked about the same

things I read here and what Dr. Bridwell had said. He promised me he could

straighten me out and that would help the nerve pain down my leg. In April 2010

I had the surgery. I can now stand straight and walk about without the pain. I

can look at everyone's face instead of their shoes. I think, all things

considered, he did a good job on me. Of course, I'm not painfree or would I

consider my back normal, but it is much improved. I was approaching 60 years

old, and I knew I had to make up my mind soon because my bones weren't getting

any younger. Now I wish I'd done it sooner. When I think of all the suffering

and being unable to do as I wished. If you want to know more feel free to

e-mail me. My e-mail address is with my name in the members file.

Elaine

>

> I am a new member to this group and quite honestly this is the only group I

have

> ever joined and am not quite comfortable yet. I had a Harrington fusion in

1967

> to correct a double curve, at the age of 13. It was performed at War Memorial

> Childrens Hospital, London Ontario by Dr. Kennedy. This surgery served me

> well, but after 30 years I started to experience symptoms I had not

experienced

> before. The most notable was a tendancy to tip forward. Onto the web I went

and

> much to my surprise, and perhaps dismay, there was article, after article

> describing what I was experiencing. Hip and leg pain, pins and needles in the

> foot, searing heat in the upper thigh, the drop to the knees sharp pain as the

> discs below and above the fusion deteriorated and the fatigue. The mind

numbing

> fatigue from coping with these symptoms and the loss of sleep from the

> persistence of the symptoms, perhaps even worsening, when in a reclining

> position. But much to my surprise the symptoms were the least of my problems.

> The real frustration is finding someone who recognises this syndrome. I still

to

> this day don't think the family physician has done much research on the

subject

> even after presenting him with the research that I did on my own. However he

has

> supported any request I had for referrals, and I was fortunate enough to have

> initially been sent to a physiotherapist that did recogize the flatback and

was

> able to suggest names for perhaps referral. He also recognised the limitations

> he had in helping relieve the symptoms. So I have been to several specialists,

> one telling me to come back when I could no longer walk, one eager to do the

> surgery within a few months, and one telling me perhaps in 5 years. That being

6

> years ago. I have been to a physician from whom I received an injectable

> cocktail to the lower spine (3x) for which there was little or no relief. I

have

> been to a neurologist who asured me there was help when I was ready, but for

now

> I am coping well. I did go on a CPP disability for which I was thankful to be

> accepted immediately. However, believe me I would much rather be working as I

> worked in the health field and miss it terribly. I am very interested in how

> this type of syndrome affects each individuals personality, or if

> psychologically. Certainly I could understand how easy it could be to become

> depressed. I am also interested in coping skills others have developed.

>

> Thanks D.S.

>

Report post · May 14, 2011

Dear Alvera,

Thank you. I have considered Dr. LaGrone & he will probably be my next stop after the Mayo. I have a cousin in Amarillo, so that sound like a good place to go. I will keep you advised as to when I come that way. Thank you for the prayers, they may help the most.

Prayers & God's Blessings to You........back to you......Sincerely Robbie Dildine

Would like to encourage you to get an opinion from Dr. LaGrone inAmarillo, Tx. He is a noted Revision Specialist. I've been seeing himfor 11 years. I've had to put surgery on hold, because I had a doublemasteomy. Since I am now 6 years away from that bump in the road...I ammore than ready to rid of the pain stemming from flatback. Had the Harrington Rod and lukey wire surgery in 1985 in OKC by Dr. S FultonTompkins. ....Would be more than glad to meet up with you if you dochoose to visit Dr. LaGrone. I live 2 hours from Amarillo, Tx.Prayers & God's Blessings to You........Alvera White

Report post · May 15, 2011

Looking forward to hearing and meeting you....

Alvera

Re: [ ] Re: New member

Dear Alvera,

Thank you. I have considered Dr. LaGrone & he will probably be my next stop after the Mayo. I have a cousin in Amarillo, so that sound like a good place to go. I will keep you advised as to when I come that way. Thank you for the prayers, they may help the most.

Prayers & God's Blessings to You........back to you......Sincerely Robbie Dildine

Would like to encourage you to get an opinion from Dr. LaGrone inAmarillo, Tx. He is a noted Revision Specialist. I've been seeing himfor 11 years. I've had to put surgery on hold, because I had a doublemasteomy. Since I am now 6 years away from that bump in the road...I ammore than ready to rid of the pain stemming from flatback. Had the Harrington Rod and lukey wire surgery in 1985 in OKC by Dr. S FultonTompkins. ....Would be more than glad to meet up with you if you dochoose to visit Dr. LaGrone. I live 2 hours from Amarillo, Tx.Prayers & God's Blessings to You........Alvera White

Report post · May 21, 2011

Welcome to the group,

The group is a great source for info and just being able to vent our

frustrations and joys over our children and their chronic illness. My daughter

was 4 when she was diagnosed with jia but I believe looking back she has had

arthritis since is was much younger. I wish you all the best in hopes of finding

the right drug for your child and that he continues to only have it in one knee.

and that someday he will get to a point of remission.

Again welcome and feel free to ask anything and let yourself vent I have found

it definately helps in knowing you are not alone with this illness .

...mom to Sophie ^ yrs old jia and iga deficiency.

>

> Hi,

>

> I am new. My son was just diagnosis with JRA. We are currently waiting for

which type he has. He is 17 months old and has been limping on his left leg for

4 months. They think it is in his left knee only so far. We go for a MRI the

first week of June. I am waiting for my insurance to approve PT, eye doctor,

and the MRI. I am hoping we can get his range of motion back on his left knee.

It does not straighten but he can bend it. He takes naporsyn in the am and pm.

So far it seems to help with the pain. We are trying to be optimistic but some

times it is hard. I am currently pregnant with my second child so I pray this

is not something she will have. Overall he is a happy baby just limps. Thank

you for listening.

>

Report post · May 22, 2011

Hi Nikki,

I'm new as well, and my daughter was also just diagnosed. She's 21 months old

and has been limping for at least 4 months. So far her arthritis only seems to

be in her left knee. She's taking Naproxen twice a day, which helps a bit though

it doesn't stop her limping, and she just had a cortisone shot in her knee two

days ago under general anesthesia. She can't fully straighten her leg anymore

either. The physio lady said she'd contact us after a meeting with the doctor

and nurses to let us know if we'd need regular physio appointments and/or

splints/casts to correct it.

JRA is only thought to be hereditary in the sense that children with it often

have family histories of autoimmune disorders. I have two immediate family

members with type 1 diabetes, and I had Graves' disease myself in between my

pregnancies. My son, who is nearly two years older than my daughter, is

perfectly healthy so far.

Am I correct to assume from your comment about waiting for approval from your

insurance that you're in the US? I have to say that, while I always had great

insurance coverage in the US myself, I'm very happy that I'm Australia now that

my daughter has been diagnosed. The public healthcare system here is so much

better, and if a doctor orders a test or treatment that's all there is to it. I

really hope you don't have to jump through too many hoops to get your son

treatment!

Best,