Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Jessi Thanks for the letter, yes we are lucky in the Northern zones for autumn weather, there is so much colour , apple cider , turkey, beautiful deer ,and all that stuff, I used to love the smell of burning leaves, of course that is forbidden anymore. Still the crunch of leaves underfoot are nice! Plenty of that right now! Five months of winter coming up! Snow and more snow! we get about 64" total in this area, thank goodness not all at the same time, you know a foot here, a foot there and it does melt somewhat between times! Further up in the state it is a different story, in Tug Hill they get as much as three feet over night when the wind blows in just right from Lake Ontario! Drive down their streets at such time and only the tops of the ranch houses show . I had to work up there once and the only thing I could see on Main St was a glow shining from the stores and the tops of the street lights, not an area I would care to live in! The streets are clear, but oh the snowmobiles, by the dozens, are on those streets and allowed to be! The Adirondack Mountain areas are full of skiers,on big runs from the tops of designated mountains. There is little colour in the trees this year, not enough to go out and take photos, due I guess to the dry summer, well next year is another hope of course! The leaves that were colorful were drab brown in a day! Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Just my 2 cents worth here...I agree rusty. We have but 2 choices as we battle the war we live and that is give up and surrender or prepare to fight and once you have begun the fight , do not quit! I live by the serenity prayer and it meets me eye to eye daily as it is the wallpaper on my comp. GOD, grant me the serenity to accept the things I cannot change, (one of these being the arthritis) Courage to change the things I can, (this being how I choose to live with it and deal with it) and the wisdom to know the difference (this sometimes being the difficult part). I have given much credit to my parents just as I do the parents on the list! You guys are a big part of how your child(ren) will develope and deal with the all they confront in life including their arthritis. Love, compassion, empathy and support are the most you can give and of course even when it seems difficult give them wings!!! If at first they do not fly, with your support they will take flight!!! Hugs to all! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 : I don't know how Rob deals with it, either. He is just steady and calm and sometimes, does have what we call a 'meltdown', but seems to take everything in stride. He was pretty depressed a few weeks ago, even up to last week, but this week is really bright and cheerful, despite still having pain. I think it is the prospect of, lets see, 17 more days till school's out! That is interesting about the adeno virus being the culprit with your bloody urine. I'll have to look that one up. Rob's bloody pee lasted from May last year till November, then the recent flare up a few weeks ago, and none since. When will you get your CT results back? Are you having any abdominal pain recently? I so wish you could go to San Diego..I would love to meet you! and Rob 15 Spondy PS Any results from the PH probe? On Wed, 12 May 2004 01:05:38 EDT bncknwurnumber@... writes: Sucky- a descriptive word for a situation which is no fun and not fair for someone to go through. With that said. That really sucks. I will be praying incredibly hard for . Poor little guy. Peeing blood is incredibly scary. If you recall a few months ago I was peeing blood for two weeks straight, mine just ended up being the adeno virus that attacked my kidneys.. Common for kids with suppressed immune systems otherwise a rare thing to happen..I dont even know how Rob (big rob) even deals with that, it was incredibly scary and uncomfortable for me....He is an amazing kid, yeah 15 isn't a kid but at 19 I do have seniority to use that word . I really hope they figure out what is going on with and that his pee clears up. Do they have a special nurses bathroom. I hated using school bathrooms they're gross.. so I was allowed to use the private and clean bathroom in the nurses office. Maybe they would let do that and he could get a special pass to leave when he needs to pee. Just a thought. Lots of Love and Prayers poly JRA and Spondy, 19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 " I don't know how Rob deals with it, either. He is just steady and calm and sometimes, does have what we call a 'meltdown', but seems to take everything in stride. " he does it with lots of support and Love from his parents!! If ya'll will excuse me, I am in a bit of an opinionated editorial kind of mood,, so with that said and out there. I took that line there and my take on it is. 'We deal with it because we simply have no other choice but to deal with it. If not then the only other choice it to give up and die! As a teenager growing up with it I never brought up the subject of my arthritis, it was there and it wasn't going away and I wasn't letting it take me down. I never trued away from anything that my friends wanted me to do, But of course there were those who would exclude me from things, because of the arthritis. How I dealt with that was to take on a get into something else mentality. We can't make it go away, and even if there were to be a cure discovered tomorrow! The residual effects will be with me for the rest of my life! So, I live with it, and push ever forward, 'sometimes at a rusty snails' pace' but ahead non the less! Give em lots of support, understand it as best possible, endless encouragement for what ever of lifes endeavors they want to try, so that they! find their own limitations. The greatest barriers we face is those of self defeatism, societal barrier's are but mountains waiting to be climbed. I'll climb those mountain's even if it does take me twice as long, so world don't even think to count me out. Embrace your strength's! sharpen them to a fine point and make your mark in this world. No matter what the size it be! Be true to your self above all other's! tiil next time! Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 > If ya'll will excuse me, I am in a bit of an opinionated editorial > kind of mood,, so with that said and out there. To kind of run with Rusty said here: I think that, in regards to how we deal with the disease, especially at a young age, I would say that it simply is what it is. We are aware that we are different; however, we don't have the context of what it is like to live without the (hopefully minimal) challenges of the disease (or I didn't - Dx'd at age 5), so we just live because our life is our life. Ha. I hope that makes sense. What I basically mean is that we don't know what that grass over the fence is like, so we're, for better or worse, familiarizing ourselves with our own somewhat deteriorated fields. Take care, 30, JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 My sister just got her real estate license this week so we're going to look at houses tomorrow after church. I'm being careful not to stress over it, but I did too much yesterday working in the yard. You be careful not to over do it, OK? Where does the time go? Seems like only a couple years since they were starting school. De Faith is the ability to not panic. -----Original Message-----From: [mailto:kcmija@...] Sent: Friday, March 04, 2005 8:12 PMHepatitis CSupportGroupForDummies Subject: Re: : Well he thinks I should treat but no decision on that yet. We are planning on downsizing here also. We will be just Janet and I in a couple of years and we have way to much house. Going through changes. Goes by fast doesn't it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 I am so glad that you are here. You write wonderfully and are such a comfort. I especially was glad that you wrote about Sophie's journey to diagnosis. As you know. Rob also started with the Louisville rheumy and we moved on to Shriner's in Lexington and then to Cincinnati. We almost went to Riley as we had been there when Rob was a toddler for a second opinion in regard to his asthma and pectus. But we got into Cincinnati sooner. Anyway, I have a question for you: How did you find out about the local AJAO chapter and attend our meeting back in October? We need to extend our outreach and find the kids we are missing, and I was interested in how you found the group. Once again, so glad that you are here. Although sorry that you have reason to be here. I know that you understand! and Rob 16 Spondy PS Has Schultz contacted you about the article yet??? On Tue, 28 Feb 2006 16:14:25 -0500 " Weber " <teamsophie@...> writes: > Christene, > > Welcome to the group. So sorry to hear of your son's possible JRA. > If you > are looking for a bit of a silver lining, it is that you have > started off on > the right foot. You have a rheumy appt. quite soon into the start > of your > son's symptoms and that you have found this group. It took 10 > months > of long and very emotional searching to find a diagnosis for my > daughter. > Her symptoms started the December before her 3rd birthday (in July). > We > didn't get a diagnosis until the Sept. after she turned 3. She has > pauci-articular JRA (affects her left foot and ankle, right knee, > and neck) > and JRA associated uveitis (in simplest terms... arthur of the > eyes). I > didn't find this support until this past November-ish and my > daughter > had been diagnosed for almost a year. I can't tell you how nice it > is to > find others that share a similar experience after a year of feeling > isolated, scared, confused, angry, etc... It is bitter sweet. I > certainly > don't want any child to suffer this terrible disease but I do want > the > advice, encouraging words, and UNDERSTANDING from others that > *actually know > * - not just imagine - what it is like to live mine and my > daughter's lives. > > I'm sure your head is swimming right now. It is a lot to process. > We are > here to help. Others are better versed in the disease than I but > there is a > tie that binds us all. We are here to give you what help we can... > or just > listen. > > To give you a better understanding of my daughter's experience w/ > JRA, I'm > going to include a story I wrote that tells a little of what life is > like > from her (Sophie's) perspective. After that, I'm including a > description I > had written about our experiences from the day Sophie woke with her > first > symptom to the day we actually got a diagnosis. You are also > welcome to > visit the site Sophie has that keeps our family and friends updated > on her > medical progress (www.caringbridge.org/visit/teamsophie). Read the > journal > history for a look into the ups and downs we've had over the past > year. > > Good luck. My heart and hopes are with you and your son! > _______________ > > Sophie's story: > > > My name is Sophie. When I was two years old, I went to bed just > fine but > woke with a stiff neck. My life would never be the same after that > night. It > took 10 long and very emotional months as well as countless doctors > visits, > Xrays, MRIs, CT scans, and blood tests to FINALLY be diagnosed with > pauciarticular juvenile rheumatoid arthritis (JRA) when I was 3 > years > old. This > terrible disease affects my neck, left foot and ankle, as well as my > right > knee. > > > > I have had steroid injections directly into my foot, ankle, and knee > to stop > the swelling and increase my mobility. I participated in rigorous > physical > therapy both at Kosair Children's Hospital and at home to make me > stronger > after having restricted movements for so long. And, I take lots of > medications as well as visit plenty of doctors a lot to try and > combat the > painful effects of my arthritis. > > > > I started out by taking Naproxen twice a day for pain management. > That hurt > my tummy so I started taking Prevacid as well. (My joints are > " quiet " right > now and I'm able to stop taking both of those.) I also take > methotrexate > (mtx) once a week. This fights my autoimmune disorder by lowering > my immune > system. It helps me by keeping the affected joints from attacking > themselves and causing an arthritic " flare " . > > > > The down side is that in lowering my immune system, it takes me much > longer > to get over any type of illness or injury. It also makes me unable > to take > vaccinations that include the live virus. I get " vaccinated by the > masses, " > meaning that my chances of coming into contact and contracting such > a virus > is greatly reduced because the vast majority of other children have > been > vaccinated. I take a vitamin with folic acid so that I don't get as > many of > the negative side effects from the mtx such as mouth sores, hair > loss, and > tummy aches. > > > > It is such a strong drug that my doctor is afraid that other parts > of my > body - like my liver - might be hurt by it. This is why I have to > get my > blood taken every 6 weeks. Sometimes, I have it drawn more often if > I'm in > a " flare " . Mama tells me it is a good thing because it lets > everyone know > if I'm healthy or not. > > > > I try to be brave but it is really tough when the needle stings me! > I cry > and Mama holds me tight, wipes away my tears, blows my nose, and > tells me > over and over that she loves me and that she is so proud of me. She > says - > as she kisses my cheeks again and again - that I'm the bravest girl > she > knows. I don't know if it is true but it makes me feel good anyway. > It > also helps that (the nice lady that takes my blood) is so > patient with > me and gives me so many stickers each time! > > > > Louisville only has one pediatric rheumatologist that can treat my > disease. > That limited choice forces me to have to drive almost 2 hours to see > my > doctor in Indianapolis. She is at the Juvenile Arthritis Clinic in > Riley > Hospital. We used to have to go there every 6 weeks. It is close > to every > 3 months now that my joints have quieted. Mama says they are worth > the > drive because they are so knowledgeable and understanding with my > jra. > > > > I also have an eye disease that is associated with JRA that is > called > uveitis. In simplest of terms, this is arthritis of my eyes. It > is > something I will have for the rest of my life. My case is quite > severe > because it affects all parts of both my eyes. I was told that > damage is a > guarantee. We just won't know to what degree until it occurs. > > > > Even though the diseases are associated, they are treated separately > but in > cooperation with one another. For example, the mtx not only treats > my > arthritis flares but also the flare ups of uveitis. The dosage can > be > adjusted according to their severity. > > > > Eye drops help when trying to keep my eyes " quiet " . I used to take > 2 > different steroid drops up to 6 times a day and 1 type that dilated > my eyes. > I took this one because the calcium created by my uveitis flare > (otherwise > known as band keratopathy) caused my pupils to stick. The bad news > is that > the steroid drops also promote cataracts and glaucoma. The good > news is > that they do work and have been successful at " quieting " the flare > ups of > uveitis that I have experienced. I now take only 1 type of drop 4 > times a > day. It is certainly one of my least favorite things but it isn't > as bad as > having my blood taken. Dare I say that I have even gotten used to > it? > > > > My eyes have been very unstable since learning of my uveitis > diagnosis. My > eye sight can go from 20/20 to 20/200 and back to 20/20 within 2 > weeks > times. I am put on a high dose of oral steroids if my flare is > really bad. > This is to hit hard the swelling in my eyes and hopefully keep them > from > getting damaged. I know the medicine is supposed to help me but I > just get > so sick of having to take so much stuff. The mood swings, > increased > appetite, and rapid swelling/weight gain that the steroid causes is > never > fun. Thankfully, it works pretty quickly and I'm able to get off of > it > after a month or two. > > > > As you can see from reading my story, it is tough to have jra and > uveitis. Each > new day brings with it uncertainty. Will I wake in pain? Will I > have > another tummy ache? Will another joint become inflamed? Will my > joints > that had been quiet flare again? Will my eyes swell? Will I be > able to see > my family as clearly as I could the previous day? Will I have even > more > medicine I have to choke down so I can keep up with other kids my > age? Or, > will this be one of those good days that I like so much? I'm not > sure but I > am brave enough to find out! > > > > Please support me and others like me by participating in this > year's > Arthritis Foundation Walk on June 17th at Slugger Field. TeamSophie > is > always looking for people to walk with us and raise money for this > worthy > cause. If you can't donate your time… your money is always > welcomed! > > > Thank you for caring about me enough to read my story, get involved, > and > give support! Keep reading below for a message from the Arthritis > Foundation. > ________________ > > The diagnosis story: > > > My daughter, Sophie, is one of the loves of my life. She's > compassionate, > adventurous, loving, intelligent, and vibrant. Sharing a life with > Sophie > has brought me some of my most joy filled moments. Unfortunately, > terrifying moments also come with the package. > > > > As Sophie grew, so did her love of the outdoors and of > any type > of physical activity. She was always on the go! For this reason, I > wasn't > too alarmed when she had gone to bed perfectly " normal " but had > woken the > next morning with a stiff neck. She didn't complain of being in any > pain. I > assumed she had pulled a muscle or something and was going to give > it time > to correct itself. > > > > Two weeks passed and nothing improved. She could turn > her neck > about 20 degrees both ways. After that, her neck would stop moving > by > itself and her entire upper body and shoulders would move with her > as she > turned. I took her to see the pediatrician a week before Christmas > 2003. > > > > Thankfully, the doctor could see that something was > wrong with > Sophie's neck movement. She just had no idea as to what was the > cause. The > two doctors she brought in and consulted with were also clueless. > We were > told to take Sophie home and watch for improvement or change for > another > week. Christmas came and went while Sophie's neck troubles stayed > the same. > We took her back to the pediatrician who still had no answers to > give. > Instead, > we were referred to a physical therapist. > > > > I had high hopes that this would be the person with some > answers > as to why my daughter went over night from being such an active > little girl > to barely being able to move her neck from side to side. That > wasn't the > case. The physical therapist (PT) examined Sophie and couldn't find > a > reason for her stiffness. Because he wasn't pediatric, he sent us > in that > direction thinking a PT specializing in pediatrics might pick up on > something he missed. That also was not the case. That PT was as > stumped as > the first. We were sent back to Sophie's pediatrician. > > > > Once again, the pediatrician examined Sophie. I was > angered > because the doctors were very complacent regarding Sophie's > condition. It > was assumed that because she did not complain of being in pain, hers > wasn't > a serious problem. They made blanket statements about waiting it > out and > the problem possibly fixing itself and leaving as abruptly as it > arrived. It > didn't seem to me that my daughter's health mystery was a top > priority to > that pediatric office. I am paralyzed with fear when I think about > what may > have happened if I would have left my daughter's care in their > hands. The > doctors had no other advice for us than to give it time. That is > when I > stepped up to the plate and made it my mission to find the cause to > Sophie's > neck problems. We left that pediatric office and never returned. > > > > I am very fortunate to have a husband that works outside > of the > home so that I can stay at home as a full-time mother. At that > time, Sophie > was our only child. I shutter to think just how long it may have > taken to > get a diagnosis if I hadn't been able to literally devote all my > time to > Sophie and the mystery of her neck. The next 8 months of our lives > were > spent looking for answers. > > > > Sophie saw countless specialists and had numerous tests > run > during the time we searched for answers. I'm sure I won't cover > them all > but here is a list of where our time was spent: We went through the > First > Steps process to see if Sophie qualified for any assistance or > physical > therapy. She did not since her difficulties didn't cause any > developmental > delays. That coordinator suggested we see an ENT. Sophie's ENT was > alarmed > at her lack of neck movement but felt it wasn't anything in his > field of > expertise that was the cause. He suggested we see a pediatric > orthopaedist. > > > > > We had an appointment with her, had X-rays taken of Sophie's neck > and then > returned for a follow-up with that doctor. Since the X-rays showed > nothing, > that doctor ordered an MRI and CT of Soph's neck and spine. When > these > results were in, we were told – yet again – that no cause could be > found. Next > came the pediatric neurosurgeon. He looked over all the films and > past test > results and couldn't find anything which led to him ordering a few > more > X-rays. Again, he found nothing that would cause Sophie's problems > with her > neck. > > > > By this time, we were supposed to follow up with the ENT who was > shocked > that we hadn't found any answers. He suggested we see a pediatric > neurologist. During the time we had to wait for our appointment > with the > neurologist, Sophie's left ankle started swelling. We took her to > the > Immediate Care Center (it was a weekend, of course). They took > X-rays, > found nothing to be broken, wrapped her ankle, said to stay off of > it, and > sent us on our way. This turned out to be the best thing that could > happen > for Sophie. > > > > The pediatric neurologist recognized Sophie's symptoms > (stiff > neck and especially the swollen ankle) as those of a possible > Juvenile > Arthritis patient. He gave us the name of the ONLY PEDIATRIC > RHEUMATOLOGIST > in Louisville as well as pulled a few strings to get us an > appointment > fairly quickly. I had also been interviewing new pediatrician > offices > during all of this and had found one I really liked. I took the > information > the neurologist gave us, as well as all her old medical records to > Sophie's > first appointment with the new pediatrician. He seemed to agree > with the > previous doctor in that it looked as if we were dealing with > Juvenile > Arthritis. He ordered another battery of blood tests which > ultimately came > back showing that it truly was Juvenile Arthritis that had its > clutches on > Sophie. It was suggested by her pediatrician that we travel north > to > Indianapolis to the Juvenile Arthritis clinic at Riley Hospital. I > was > reluctant to make the 2 hour drive if we could be seen and treated > by a > doctor who was only 10 minutes from our home. > > > > So, we kept our previously made appointment with > Louisville's > pediatric rheumatologist. After looking over all of the past > doctors' > notes, blood test result, and films from Sophie's X-rays, MRI and CT > scan, > as well as examining her for himself, he confirmed that Sophie did > have > Juvenile Rheumatoid Arthritis. > > > > *FINALLY A DIAGNOSIS!* > > > > After 10 long and emotion filled months, we finally had > a name > for the mysterious beast that had taken hold of our daughter's neck > and > ankle. I would love to have believed it was nothing and would go > away on > its own. My heart and head knew that would never happen. So, it > was time > to regroup and focus on the fight ahead of all of us! > > > > I had some initial personality conflicts with the Louisville > " rheumy " and > didn't feel that Sophie's need would be best served there. So, I > took the > advice of my new pediatrician and took her up to Indy. After a > thorough > exam and discussion with the Indy doctor, the original diagnosis > was > confirmed. It was determined that Sophie had pauciarticular > juvenile > rheumatoid arthritis. > > > > It affected her neck, left foot and ankle, and right knee. She was > immediately prescribed naproxen, methotrexate, and physical therapy. > We > also decided to go ahead with steroid injections directly into her > left foot > and ankle as well as her right knee. To do this, they needed a > clear > picture of all the tiny foot joints involved so we needed another > MRI. We > were also told to get to a pediatric ophthalmologist as soon as we > possibly > could. > > > > The injections went very well. They quieted the joints almost > immediately. > Sophie was much less grumpy, had more energy, and more mobility. > Her neck > was longer to come around but after much PT and hard work on her > part, > Sophie's neck has almost returned to normal. She still doesn't have > full > range of motion but only a trained eye could pick that up. > > > > The pediatric ophthalmologist appointment didn't go nearly as well. > Sophie > did have JRA associated uveitis. She was found to have a pretty > severe case > that affects all parts of both of her eyes. This is more commonly > referred > to as panuveitis. She was put on heavy doses of oral steroids as > well as 2 > differing steroid eye drops and 1 drop for dilating her eyes. We > were told > that ocular damage is a guarantee. We just won't know the severity > until it > occurs. > > > > I had never heard of juvenile rheumatoid arthritis before my > daughter was > diagnosed with the disease. In fact, I had never even known they > could have > arthritis. Now, I fight this disease daily - and for the rest of > her life - > along with my daughter and husband. Each time Sophie goes to bed, I > wonder > if she will wake in the morning with a new arthritis flare. Each > night she > closes her eyes, I wonder if she will be able to see as clearly > through them > the next time they open. > > > > Though I would never let Sophie see, I'm scared and afraid. I'm > scared that > her next flare might be crippling. I'm scared that my darling and > precious > daughter's eyes will become permanently damaged at some point. I'm > scared > that I will not have done enough to keep my daughter safe and well. > However, > I'm afraid that not enough research is being done regarding JRA. > What is > its cause? What is its course? What are its weaknesses? What is > its cure? > I find it to be pathetic that it took 10 months and countless > doctors and > tests before my daughter was diagnosed. > > > I'm afraid that the government might be as complacent as Sophie's > first > pediatrician. The mentality of, " …if she doesn't complain then it > must not > be too bad, " just doesn't cut it. It is bad. She is important. > Something > must be done. > > ___________________ > > Sorry this has been so long but I thought it might help open a > window into > the world of JRA. Please keep us updated as you continue your > journey with > your son. > > Weber > Profession Mom to: > Sophie 4 - pauci/panuveitis > Charlie 31 weeks - fussy but oh-so-lovable > teamsophie@... > > > > On 2/28/06, Tepper, Michele <MTepper@...> wrote: > > > > Hi, Christene. Yes, my son still has it. He is in a medicated > remission > > of sorts. When he takes his meds regularly (he is on > methotrexate), he > > has no symptoms. Now, he is going through a period where he is > rather > > non- compliant about the meds. It's one of my on going vents here > on the > > board and so he will have some swelling and back pain. The type > of > > arthritis he has is in the tendons a lot, which is where he now > has most > > of his problems. Again, if he would take the med better, I feel he > would > > have no problems. From what I understand, some teenagers go > through > > this. He began his at 13 (in his ankles), so we have been told he > > probably will not outgrow it. It will always be of concern. I know > that > > others here, whose children were younger when it began, may > outgrow it. > > Usually when I say my son has arthritis people react with " Oh > that's not > > so bad. Everyone gets that " What they do not understand is that > > arthritis in a child (or rheumatoid arthritis in an adult) is an > auto > > immune disease like diabetes. It is not osteoarthritis like many > older > > people get. It is so hard to see a young child unable to walk or > run and > > in pain. It is life altering. My son could not run for 2 years of > his > > life; it was too painful. Yet he continued to do sports and be as > active > > as possible, like the kids on this list. The kids here are real > heroes > > to me. They keep right on going, not letting this stop them. Once > the > > right " cocktail " , as we call it, of meds is found for your son, he > will > > begin to be able to move better. It may take time and the meds are > often > > strong ones, but the difference they make is often phenomenal. > Also, one > > thing to keep in mind - rheumatoid arthritis is a different > disease than > > JRA. Just because a child has JRA, does not mean that he will get > RA as > > an adult. As a matter of fact, my son's rheumy uses the initials > JIA > > (juvenile idiopathic arthritis) to differentiate between the two. > > Michele ( 18, spondy) > > > > RE: NEW MEMBER TO JRA > > > > I can't imagine waiting 7 months to see a Ped Rheumy...once I get > the > > actual diagnosis of what my son has then I will be able to talk > to > > others who share the same disease. Yes Michele this is the place > for me > > to share my thoughts and feelings and thank you for the > encouragement > > that things will get better as much as I don't feel like it will > at the > > moment. Does your son still have it? When I tell people that my > 2 year > > old could possibly have JRA they look at me like he has some > contagious > > disease. I will keep you posted on what the doctor says about all > his > > symptoms. CHRISTENE (ALEXANDER 2 YEARS OLD) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 , I can't thank you enough for your kind words. They brought a smile to my face. I sent Donna a copy of both " essays " for her advocacy trip. I don't know, hopefully someone reads them and one or the other tugs at a heart-string or two. I can't wait to hear what she has to say about the trip upon her return! As far as hearing about our local AJAO, I initially stumbled across it on my own. I devoured the internet resources when JRA was thrown out as a possible dx. During my search, I came across a site for what a believe was FACES at the time. I glanced at it quickly and kept going when I saw it wasn't quite what I was looking for at the time. Once Soph's dx was confirmed by Louisville's ped. rheumy, my best friend's husband found out that a co-worker of his was also battling this disease with her daughter (I hope I didn't lose you on that one...). She was incredibly kind and sent him home with a book of hers that introduced and explained JRA. She also had a personal note stuck in the pages. In it, she mentioned FACES and I filed the info./name in my memory. (As I've shown here lately, it is truly a wonder that I was able to recall that info. at a later date.) I believe her name is Peak or Peaks. Does that name ring a bell? I have never spoken with her but did send a note of thanks back with the returned book. I often look to see if her name pops up on the jra lists... Anyway, I emailed FACES a couple of times once Sophie's treatment was underway. However, I just wasn't at a place where I wanted to get involved. I was still too overwhelmed with the new direction my life had taken as a parent of a chronically ill child. I did leave my email with Donna (I'm assuming) and received periodic updates on events. When I saw that there was a local walk benefitting arthritis I new that was going to be my and my family and friends introduction into active advocacy for Sophie and JRA. While we were participating in the 2005 walk, Donna saw our TeamSophie - JRA - shirts and stepped in to introduce herself, meet Sophie, and inquire about our story. The rest, as they say, is history! I saw the email about the newly formed/renamed AJAO and then the one detailing October's meeting. I couldn't pass up the chance to involve myself and my family. I'm so thankful that and I attended. It gave me the priceless opportunity to meet Donna, , and you! Though the time together was short, I think the bond of fighting JRA made it feel as if you are all kindred spirits and had been lifelong friends. As far as suggestions for getting the word out, I'm afraid I don't have many. I find it extremely unfortunate that Dr. Shikler never mentioned the fact that a support group exhisted. I'm sure it would help if he did so with his other patients. (Maybe he does and that detail just got overlooked during our visit...) Soph's ped. rheumy in Indy said she would love info. to distribute from her clinic to those families living in our area. Other than that, I'm tapped out! I'm sorry to say that I probably wouldn't have found you all if it hadn't been for my own diligence and hunger for educational resources and the help of . I don't know, . That is definitely something I'm going to contemplate further! It breaks my heart knowing that there are families out there suffering through this alone when support such as AJAO is out there just waiting... heck, BEGGING to help, educate, encourage, and support! Touching on your other question before I sign off... I have yet to hear from . I still welcome and look forward to her contacting me. Thanks again for your kind and caring support! On 2/28/06, snooksmama@... <snooksmama@...> wrote: > > I am so glad that you are here. You write wonderfully and are such a > comfort. I especially was glad that you wrote about Sophie's journey to > diagnosis. As you know. Rob also started with the Louisville rheumy and > we moved on to Shriner's in Lexington and then to Cincinnati. We almost > went to Riley as we had been there when Rob was a toddler for a second > opinion in regard to his asthma and pectus. But we got into Cincinnati > sooner. > Anyway, I have a question for you: > How did you find out about the local AJAO chapter and attend our meeting > back in October? We need to extend our outreach and find the kids we are > missing, and I was interested in how you found the group. > Once again, so glad that you are here. Although sorry that you have > reason to be here. I know that you understand! > and Rob 16 Spondy > PS Has Schultz contacted you about the article yet??? > > On Tue, 28 Feb 2006 16:14:25 -0500 " Weber " <teamsophie@...> > writes: > > Christene, > > > > Welcome to the group. So sorry to hear of your son's possible JRA. > > If you > > are looking for a bit of a silver lining, it is that you have > > started off on > > the right foot. You have a rheumy appt. quite soon into the start > > of your > > son's symptoms and that you have found this group. It took 10 > > months > > of long and very emotional searching to find a diagnosis for my > > daughter. > > Her symptoms started the December before her 3rd birthday (in July). > > We > > didn't get a diagnosis until the Sept. after she turned 3. She has > > pauci-articular JRA (affects her left foot and ankle, right knee, > > and neck) > > and JRA associated uveitis (in simplest terms... arthur of the > > eyes). I > > didn't find this support until this past November-ish and my > > daughter > > had been diagnosed for almost a year. I can't tell you how nice it > > is to > > find others that share a similar experience after a year of feeling > > isolated, scared, confused, angry, etc... It is bitter sweet. I > > certainly > > don't want any child to suffer this terrible disease but I do want > > the > > advice, encouraging words, and UNDERSTANDING from others that > > *actually know > > * - not just imagine - what it is like to live mine and my > > daughter's lives. > > > > I'm sure your head is swimming right now. It is a lot to process. > > We are > > here to help. Others are better versed in the disease than I but > > there is a > > tie that binds us all. We are here to give you what help we can... > > or just > > listen. > > > > To give you a better understanding of my daughter's experience w/ > > JRA, I'm > > going to include a story I wrote that tells a little of what life is > > like > > from her (Sophie's) perspective. After that, I'm including a > > description I > > had written about our experiences from the day Sophie woke with her > > first > > symptom to the day we actually got a diagnosis. You are also > > welcome to > > visit the site Sophie has that keeps our family and friends updated > > on her > > medical progress (www.caringbridge.org/visit/teamsophie). Read the > > journal > > history for a look into the ups and downs we've had over the past > > year. > > > > Good luck. My heart and hopes are with you and your son! > > _______________ > > > > Sophie's story: > > > > > > My name is Sophie. When I was two years old, I went to bed just > > fine but > > woke with a stiff neck. My life would never be the same after that > > night. It > > took 10 long and very emotional months as well as countless doctors > > visits, > > Xrays, MRIs, CT scans, and blood tests to FINALLY be diagnosed with > > pauciarticular juvenile rheumatoid arthritis (JRA) when I was 3 > > years > > old. This > > terrible disease affects my neck, left foot and ankle, as well as my > > right > > knee. > > > > > > > > I have had steroid injections directly into my foot, ankle, and knee > > to stop > > the swelling and increase my mobility. I participated in rigorous > > physical > > therapy both at Kosair Children's Hospital and at home to make me > > stronger > > after having restricted movements for so long. And, I take lots of > > medications as well as visit plenty of doctors a lot to try and > > combat the > > painful effects of my arthritis. > > > > > > > > I started out by taking Naproxen twice a day for pain management. > > That hurt > > my tummy so I started taking Prevacid as well. (My joints are > > " quiet " right > > now and I'm able to stop taking both of those.) I also take > > methotrexate > > (mtx) once a week. This fights my autoimmune disorder by lowering > > my immune > > system. It helps me by keeping the affected joints from attacking > > themselves and causing an arthritic " flare " . > > > > > > > > The down side is that in lowering my immune system, it takes me much > > longer > > to get over any type of illness or injury. It also makes me unable > > to take > > vaccinations that include the live virus. I get " vaccinated by the > > masses, " > > meaning that my chances of coming into contact and contracting such > > a virus > > is greatly reduced because the vast majority of other children have > > been > > vaccinated. I take a vitamin with folic acid so that I don't get as > > many of > > the negative side effects from the mtx such as mouth sores, hair > > loss, and > > tummy aches. > > > > > > > > It is such a strong drug that my doctor is afraid that other parts > > of my > > body - like my liver - might be hurt by it. This is why I have to > > get my > > blood taken every 6 weeks. Sometimes, I have it drawn more often if > > I'm in > > a " flare " . Mama tells me it is a good thing because it lets > > everyone know > > if I'm healthy or not. > > > > > > > > I try to be brave but it is really tough when the needle stings me! > > I cry > > and Mama holds me tight, wipes away my tears, blows my nose, and > > tells me > > over and over that she loves me and that she is so proud of me. She > > says - > > as she kisses my cheeks again and again - that I'm the bravest girl > > she > > knows. I don't know if it is true but it makes me feel good anyway. > > It > > also helps that (the nice lady that takes my blood) is so > > patient with > > me and gives me so many stickers each time! > > > > > > > > Louisville only has one pediatric rheumatologist that can treat my > > disease. > > That limited choice forces me to have to drive almost 2 hours to see > > my > > doctor in Indianapolis. She is at the Juvenile Arthritis Clinic in > > Riley > > Hospital. We used to have to go there every 6 weeks. It is close > > to every > > 3 months now that my joints have quieted. Mama says they are worth > > the > > drive because they are so knowledgeable and understanding with my > > jra. > > > > > > > > I also have an eye disease that is associated with JRA that is > > called > > uveitis. In simplest of terms, this is arthritis of my eyes. It > > is > > something I will have for the rest of my life. My case is quite > > severe > > because it affects all parts of both my eyes. I was told that > > damage is a > > guarantee. We just won't know to what degree until it occurs. > > > > > > > > Even though the diseases are associated, they are treated separately > > but in > > cooperation with one another. For example, the mtx not only treats > > my > > arthritis flares but also the flare ups of uveitis. The dosage can > > be > > adjusted according to their severity. > > > > > > > > Eye drops help when trying to keep my eyes " quiet " . I used to take > > 2 > > different steroid drops up to 6 times a day and 1 type that dilated > > my eyes. > > I took this one because the calcium created by my uveitis flare > > (otherwise > > known as band keratopathy) caused my pupils to stick. The bad news > > is that > > the steroid drops also promote cataracts and glaucoma. The good > > news is > > that they do work and have been successful at " quieting " the flare > > ups of > > uveitis that I have experienced. I now take only 1 type of drop 4 > > times a > > day. It is certainly one of my least favorite things but it isn't > > as bad as > > having my blood taken. Dare I say that I have even gotten used to > > it? > > > > > > > > My eyes have been very unstable since learning of my uveitis > > diagnosis. My > > eye sight can go from 20/20 to 20/200 and back to 20/20 within 2 > > weeks > > times. I am put on a high dose of oral steroids if my flare is > > really bad. > > This is to hit hard the swelling in my eyes and hopefully keep them > > from > > getting damaged. I know the medicine is supposed to help me but I > > just get > > so sick of having to take so much stuff. The mood swings, > > increased > > appetite, and rapid swelling/weight gain that the steroid causes is > > never > > fun. Thankfully, it works pretty quickly and I'm able to get off of > > it > > after a month or two. > > > > > > > > As you can see from reading my story, it is tough to have jra and > > uveitis. Each > > new day brings with it uncertainty. Will I wake in pain? Will I > > have > > another tummy ache? Will another joint become inflamed? Will my > > joints > > that had been quiet flare again? Will my eyes swell? Will I be > > able to see > > my family as clearly as I could the previous day? Will I have even > > more > > medicine I have to choke down so I can keep up with other kids my > > age? Or, > > will this be one of those good days that I like so much? I'm not > > sure but I > > am brave enough to find out! > > > > > > > > Please support me and others like me by participating in this > > year's > > Arthritis Foundation Walk on June 17th at Slugger Field. TeamSophie > > is > > always looking for people to walk with us and raise money for this > > worthy > > cause. If you can't donate your time� your money is always > > welcomed! > > > > > > Thank you for caring about me enough to read my story, get involved, > > and > > give support! Keep reading below for a message from the Arthritis > > Foundation. > > ________________ > > > > The diagnosis story: > > > > > > My daughter, Sophie, is one of the loves of my life. She's > > compassionate, > > adventurous, loving, intelligent, and vibrant. Sharing a life with > > Sophie > > has brought me some of my most joy filled moments. Unfortunately, > > terrifying moments also come with the package. > > > > > > > > As Sophie grew, so did her love of the outdoors and of > > any type > > of physical activity. She was always on the go! For this reason, I > > wasn't > > too alarmed when she had gone to bed perfectly " normal " but had > > woken the > > next morning with a stiff neck. She didn't complain of being in any > > pain. I > > assumed she had pulled a muscle or something and was going to give > > it time > > to correct itself. > > > > > > > > Two weeks passed and nothing improved. She could turn > > her neck > > about 20 degrees both ways. After that, her neck would stop moving > > by > > itself and her entire upper body and shoulders would move with her > > as she > > turned. I took her to see the pediatrician a week before Christmas > > 2003. > > > > > > > > Thankfully, the doctor could see that something was > > wrong with > > Sophie's neck movement. She just had no idea as to what was the > > cause. The > > two doctors she brought in and consulted with were also clueless. > > We were > > told to take Sophie home and watch for improvement or change for > > another > > week. Christmas came and went while Sophie's neck troubles stayed > > the same. > > We took her back to the pediatrician who still had no answers to > > give. > > Instead, > > we were referred to a physical therapist. > > > > > > > > I had high hopes that this would be the person with some > > answers > > as to why my daughter went over night from being such an active > > little girl > > to barely being able to move her neck from side to side. That > > wasn't the > > case. The physical therapist (PT) examined Sophie and couldn't find > > a > > reason for her stiffness. Because he wasn't pediatric, he sent us > > in that > > direction thinking a PT specializing in pediatrics might pick up on > > something he missed. That also was not the case. That PT was as > > stumped as > > the first. We were sent back to Sophie's pediatrician. > > > > > > > > Once again, the pediatrician examined Sophie. I was > > angered > > because the doctors were very complacent regarding Sophie's > > condition. It > > was assumed that because she did not complain of being in pain, hers > > wasn't > > a serious problem. They made blanket statements about waiting it > > out and > > the problem possibly fixing itself and leaving as abruptly as it > > arrived. It > > didn't seem to me that my daughter's health mystery was a top > > priority to > > that pediatric office. I am paralyzed with fear when I think about > > what may > > have happened if I would have left my daughter's care in their > > hands. The > > doctors had no other advice for us than to give it time. That is > > when I > > stepped up to the plate and made it my mission to find the cause to > > Sophie's > > neck problems. We left that pediatric office and never returned. > > > > > > > > I am very fortunate to have a husband that works outside > > of the > > home so that I can stay at home as a full-time mother. At that > > time, Sophie > > was our only child. I shutter to think just how long it may have > > taken to > > get a diagnosis if I hadn't been able to literally devote all my > > time to > > Sophie and the mystery of her neck. The next 8 months of our lives > > were > > spent looking for answers. > > > > > > > > Sophie saw countless specialists and had numerous tests > > run > > during the time we searched for answers. I'm sure I won't cover > > them all > > but here is a list of where our time was spent: We went through the > > First > > Steps process to see if Sophie qualified for any assistance or > > physical > > therapy. She did not since her difficulties didn't cause any > > developmental > > delays. That coordinator suggested we see an ENT. Sophie's ENT was > > alarmed > > at her lack of neck movement but felt it wasn't anything in his > > field of > > expertise that was the cause. He suggested we see a pediatric > > orthopaedist. > > > > > > > > > > We had an appointment with her, had X-rays taken of Sophie's neck > > and then > > returned for a follow-up with that doctor. Since the X-rays showed > > nothing, > > that doctor ordered an MRI and CT of Soph's neck and spine. When > > these > > results were in, we were told � yet again � that no cause could be > > found. Next > > came the pediatric neurosurgeon. He looked over all the films and > > past test > > results and couldn't find anything which led to him ordering a few > > more > > X-rays. Again, he found nothing that would cause Sophie's problems > > with her > > neck. > > > > > > > > By this time, we were supposed to follow up with the ENT who was > > shocked > > that we hadn't found any answers. He suggested we see a pediatric > > neurologist. During the time we had to wait for our appointment > > with the > > neurologist, Sophie's left ankle started swelling. We took her to > > the > > Immediate Care Center (it was a weekend, of course). They took > > X-rays, > > found nothing to be broken, wrapped her ankle, said to stay off of > > it, and > > sent us on our way. This turned out to be the best thing that could > > happen > > for Sophie. > > > > > > > > The pediatric neurologist recognized Sophie's symptoms > > (stiff > > neck and especially the swollen ankle) as those of a possible > > Juvenile > > Arthritis patient. He gave us the name of the ONLY PEDIATRIC > > RHEUMATOLOGIST > > in Louisville as well as pulled a few strings to get us an > > appointment > > fairly quickly. I had also been interviewing new pediatrician > > offices > > during all of this and had found one I really liked. I took the > > information > > the neurologist gave us, as well as all her old medical records to > > Sophie's > > first appointment with the new pediatrician. He seemed to agree > > with the > > previous doctor in that it looked as if we were dealing with > > Juvenile > > Arthritis. He ordered another battery of blood tests which > > ultimately came > > back showing that it truly was Juvenile Arthritis that had its > > clutches on > > Sophie. It was suggested by her pediatrician that we travel north > > to > > Indianapolis to the Juvenile Arthritis clinic at Riley Hospital. I > > was > > reluctant to make the 2 hour drive if we could be seen and treated > > by a > > doctor who was only 10 minutes from our home. > > > > > > > > So, we kept our previously made appointment with > > Louisville's > > pediatric rheumatologist. After looking over all of the past > > doctors' > > notes, blood test result, and films from Sophie's X-rays, MRI and CT > > scan, > > as well as examining her for himself, he confirmed that Sophie did > > have > > Juvenile Rheumatoid Arthritis. > > > > > > > > *FINALLY A DIAGNOSIS!* > > > > > > > > After 10 long and emotion filled months, we finally had > > a name > > for the mysterious beast that had taken hold of our daughter's neck > > and > > ankle. I would love to have believed it was nothing and would go > > away on > > its own. My heart and head knew that would never happen. So, it > > was time > > to regroup and focus on the fight ahead of all of us! > > > > > > > > I had some initial personality conflicts with the Louisville > > " rheumy " and > > didn't feel that Sophie's need would be best served there. So, I > > took the > > advice of my new pediatrician and took her up to Indy. After a > > thorough > > exam and discussion with the Indy doctor, the original diagnosis > > was > > confirmed. It was determined that Sophie had pauciarticular > > juvenile > > rheumatoid arthritis. > > > > > > > > It affected her neck, left foot and ankle, and right knee. She was > > immediately prescribed naproxen, methotrexate, and physical therapy. > > We > > also decided to go ahead with steroid injections directly into her > > left foot > > and ankle as well as her right knee. To do this, they needed a > > clear > > picture of all the tiny foot joints involved so we needed another > > MRI. We > > were also told to get to a pediatric ophthalmologist as soon as we > > possibly > > could. > > > > > > > > The injections went very well. They quieted the joints almost > > immediately. > > Sophie was much less grumpy, had more energy, and more mobility. > > Her neck > > was longer to come around but after much PT and hard work on her > > part, > > Sophie's neck has almost returned to normal. She still doesn't have > > full > > range of motion but only a trained eye could pick that up. > > > > > > > > The pediatric ophthalmologist appointment didn't go nearly as well. > > Sophie > > did have JRA associated uveitis. She was found to have a pretty > > severe case > > that affects all parts of both of her eyes. This is more commonly > > referred > > to as panuveitis. She was put on heavy doses of oral steroids as > > well as 2 > > differing steroid eye drops and 1 drop for dilating her eyes. We > > were told > > that ocular damage is a guarantee. We just won't know the severity > > until it > > occurs. > > > > > > > > I had never heard of juvenile rheumatoid arthritis before my > > daughter was > > diagnosed with the disease. In fact, I had never even known they > > could have > > arthritis. Now, I fight this disease daily - and for the rest of > > her life - > > along with my daughter and husband. Each time Sophie goes to bed, I > > wonder > > if she will wake in the morning with a new arthritis flare. Each > > night she > > closes her eyes, I wonder if she will be able to see as clearly > > through them > > the next time they open. > > > > > > > > Though I would never let Sophie see, I'm scared and afraid. I'm > > scared that > > her next flare might be crippling. I'm scared that my darling and > > precious > > daughter's eyes will become permanently damaged at some point. I'm > > scared > > that I will not have done enough to keep my daughter safe and well. > > However, > > I'm afraid that not enough research is being done regarding JRA. > > What is > > its cause? What is its course? What are its weaknesses? What is > > its cure? > > I find it to be pathetic that it took 10 months and countless > > doctors and > > tests before my daughter was diagnosed. > > > > > > I'm afraid that the government might be as complacent as Sophie's > > first > > pediatrician. The mentality of, " �if she doesn't complain then it > > must not > > be too bad, " just doesn't cut it. It is bad. She is important. > > Something > > must be done. > > > > ___________________ > > > > Sorry this has been so long but I thought it might help open a > > window into > > the world of JRA. Please keep us updated as you continue your > > journey with > > your son. > > > > Weber > > Profession Mom to: > > Sophie 4 - pauci/panuveitis > > Charlie 31 weeks - fussy but oh-so-lovable > > teamsophie@... > > > > > > > > On 2/28/06, Tepper, Michele <MTepper@...> wrote: > > > > > > Hi, Christene. Yes, my son still has it. He is in a medicated > > remission > > > of sorts. When he takes his meds regularly (he is on > > methotrexate), he > > > has no symptoms. Now, he is going through a period where he is > > rather > > > non- compliant about the meds. It's one of my on going vents here > > on the > > > board and so he will have some swelling and back pain. The type > > of > > > arthritis he has is in the tendons a lot, which is where he now > > has most > > > of his problems. Again, if he would take the med better, I feel he > > would > > > have no problems. From what I understand, some teenagers go > > through > > > this. He began his at 13 (in his ankles), so we have been told he > > > probably will not outgrow it. It will always be of concern. I know > > that > > > others here, whose children were younger when it began, may > > outgrow it. > > > Usually when I say my son has arthritis people react with " Oh > > that's not > > > so bad. Everyone gets that " What they do not understand is that > > > arthritis in a child (or rheumatoid arthritis in an adult) is an > > auto > > > immune disease like diabetes. It is not osteoarthritis like many > > older > > > people get. It is so hard to see a young child unable to walk or > > run and > > > in pain. It is life altering. My son could not run for 2 years of > > his > > > life; it was too painful. Yet he continued to do sports and be as > > active > > > as possible, like the kids on this list. The kids here are real > > heroes > > > to me. They keep right on going, not letting this stop them. Once > > the > > > right " cocktail " , as we call it, of meds is found for your son, he > > will > > > begin to be able to move better. It may take time and the meds are > > often > > > strong ones, but the difference they make is often phenomenal. > > Also, one > > > thing to keep in mind - rheumatoid arthritis is a different > > disease than > > > JRA. Just because a child has JRA, does not mean that he will get > > RA as > > > an adult. As a matter of fact, my son's rheumy uses the initials > > JIA > > > (juvenile idiopathic arthritis) to differentiate between the two. > > > Michele ( 18, spondy) > > > > > > RE: NEW MEMBER TO JRA > > > > > > I can't imagine waiting 7 months to see a Ped Rheumy...once I get > > the > > > actual diagnosis of what my son has then I will be able to talk > > to > > > others who share the same disease. Yes Michele this is the place > > for me > > > to share my thoughts and feelings and thank you for the > > encouragement > > > that things will get better as much as I don't feel like it will > > at the > > > moment. Does your son still have it? When I tell people that my > > 2 year > > > old could possibly have JRA they look at me like he has some > > contagious > > > disease. I will keep you posted on what the doctor says about all > > his > > > symptoms. CHRISTENE (ALEXANDER 2 YEARS OLD) > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 and ! I am working as I type on a newsletter, and an intro to AJAO-KY packet. This will include our info , the new newsletter, AJAO conference info, etc....I need input on this as well. I am hoping to have something together early next week. get with me asap on this ok... Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 : Thank you so much for your reply. I think that taking brochures and information to Riley would be awesome! Do you have a contact person there, perhaps Donna or myself could get in touch and see about them putting a sign up list in their office. This is a great idea! Let me know about any further thoughts re: getting the word out! and Rob 16 Spondy On Wed, 1 Mar 2006 15:34:37 -0500 " Weber " <teamsophie@...> writes: , I can't thank you enough for your kind words. They brought a smile to my face. I sent Donna a copy of both " essays " for her advocacy trip. I don't know, hopefully someone reads them and one or the other tugs at a heart-string or two. I can't wait to hear what she has to say about the trip upon her return! As far as hearing about our local AJAO, I initially stumbled across it on my own. I devoured the internet resources when JRA was thrown out as a possible dx. During my search, I came across a site for what a believe was FACES at the time. I glanced at it quickly and kept going when I saw it wasn't quite what I was looking for at the time. Once Soph's dx was confirmed by Louisville's ped. rheumy, my best friend's husband found out that a co-worker of his was also battling this disease with her daughter (I hope I didn't lose you on that one...). She was incredibly kind and sent him home with a book of hers that introduced and explained JRA. She also had a personal note stuck in the pages. In it, she mentioned FACES and I filed the info./name in my memory. (As I've shown here lately, it is truly a wonder that I was able to recall that info. at a later date.) I believe her name is Peak or Peaks. Does that name ring a bell? I have never spoken with her but did send a note of thanks back with the returned book. I often look to see if her name pops up on the jra lists... Anyway, I emailed FACES a couple of times once Sophie's treatment was underway. However, I just wasn't at a place where I wanted to get involved. I was still too overwhelmed with the new direction my life had taken as a parent of a chronically ill child. I did leave my email with Donna (I'm assuming) and received periodic updates on events. When I saw that there was a local walk benefitting arthritis I new that was going to be my and my family and friends introduction into active advocacy for Sophie and JRA. While we were participating in the 2005 walk, Donna saw our TeamSophie - JRA - shirts and stepped in to introduce herself, meet Sophie, and inquire about our story. The rest, as they say, is history! I saw the email about the newly formed/renamed AJAO and then the one detailing October's meeting. I couldn't pass up the chance to involve myself and my family. I'm so thankful that and I attended. It gave me the priceless opportunity to meet Donna, , and you! Though the time together was short, I think the bond of fighting JRA made it feel as if you are all kindred spirits and had been lifelong friends. As far as suggestions for getting the word out, I'm afraid I don't have many. I find it extremely unfortunate that Dr. Shikler never mentioned the fact that a support group exhisted. I'm sure it would help if he did so with his other patients. (Maybe he does and that detail just got overlooked during our visit...) Soph's ped. rheumy in Indy said she would love info. to distribute from her clinic to those families living in our area. Other than that, I'm tapped out! I'm sorry to say that I probably wouldn't have found you all if it hadn't been for my own diligence and hunger for educational resources and the help of . I don't know, . That is definitely something I'm going to contemplate further! It breaks my heart knowing that there are families out there suffering through this alone when support such as AJAO is out there just waiting... heck, BEGGING to help, educate, encourage, and support! Touching on your other question before I sign off... I have yet to hear from . I still welcome and look forward to her contacting me. Thanks again for your kind and caring support! On 2/28/06, snooksmama@... <snooksmama@...> wrote: > > I am so glad that you are here. You write wonderfully and are such a > comfort. I especially was glad that you wrote about Sophie's journey to > diagnosis. As you know. Rob also started with the Louisville rheumy and > we moved on to Shriner's in Lexington and then to Cincinnati. We almost > went to Riley as we had been there when Rob was a toddler for a second > opinion in regard to his asthma and pectus. But we got into Cincinnati > sooner. > Anyway, I have a question for you: > How did you find out about the local AJAO chapter and attend our meeting > back in October? We need to extend our outreach and find the kids we are > missing, and I was interested in how you found the group. > Once again, so glad that you are here. Although sorry that you have > reason to be here. I know that you understand! > and Rob 16 Spondy > PS Has Schultz contacted you about the article yet??? > > On Tue, 28 Feb 2006 16:14:25 -0500 " Weber " <teamsophie@...> > writes: > > Christene, > > > > Welcome to the group. So sorry to hear of your son's possible JRA. > > If you > > are looking for a bit of a silver lining, it is that you have > > started off on > > the right foot. You have a rheumy appt. quite soon into the start > > of your > > son's symptoms and that you have found this group. It took 10 > > months > > of long and very emotional searching to find a diagnosis for my > > daughter. > > Her symptoms started the December before her 3rd birthday (in July). > > We > > didn't get a diagnosis until the Sept. after she turned 3. She has > > pauci-articular JRA (affects her left foot and ankle, right knee, > > and neck) > > and JRA associated uveitis (in simplest terms... arthur of the > > eyes). I > > didn't find this support until this past November-ish and my > > daughter > > had been diagnosed for almost a year. I can't tell you how nice it > > is to > > find others that share a similar experience after a year of feeling > > isolated, scared, confused, angry, etc... It is bitter sweet. I > > certainly > > don't want any child to suffer this terrible disease but I do want > > the > > advice, encouraging words, and UNDERSTANDING from others that > > *actually know > > * - not just imagine - what it is like to live mine and my > > daughter's lives. > > > > I'm sure your head is swimming right now. It is a lot to process. > > We are > > here to help. Others are better versed in the disease than I but > > there is a > > tie that binds us all. We are here to give you what help we can... > > or just > > listen. > > > > To give you a better understanding of my daughter's experience w/ > > JRA, I'm > > going to include a story I wrote that tells a little of what life is > > like > > from her (Sophie's) perspective. After that, I'm including a > > description I > > had written about our experiences from the day Sophie woke with her > > first > > symptom to the day we actually got a diagnosis. You are also > > welcome to > > visit the site Sophie has that keeps our family and friends updated > > on her > > medical progress (www.caringbridge.org/visit/teamsophie). Read the > > journal > > history for a look into the ups and downs we've had over the past > > year. > > > > Good luck. My heart and hopes are with you and your son! > > _______________ > > > > Sophie's story: > > > > > > My name is Sophie. When I was two years old, I went to bed just > > fine but > > woke with a stiff neck. My life would never be the same after that > > night. It > > took 10 long and very emotional months as well as countless doctors > > visits, > > Xrays, MRIs, CT scans, and blood tests to FINALLY be diagnosed with > > pauciarticular juvenile rheumatoid arthritis (JRA) when I was 3 > > years > > old. This > > terrible disease affects my neck, left foot and ankle, as well as my > > right > > knee. > > > > > > > > I have had steroid injections directly into my foot, ankle, and knee > > to stop > > the swelling and increase my mobility. I participated in rigorous > > physical > > therapy both at Kosair Children's Hospital and at home to make me > > stronger > > after having restricted movements for so long. And, I take lots of > > medications as well as visit plenty of doctors a lot to try and > > combat the > > painful effects of my arthritis. > > > > > > > > I started out by taking Naproxen twice a day for pain management. > > That hurt > > my tummy so I started taking Prevacid as well. (My joints are > > " quiet " right > > now and I'm able to stop taking both of those.) I also take > > methotrexate > > (mtx) once a week. This fights my autoimmune disorder by lowering > > my immune > > system. It helps me by keeping the affected joints from attacking > > themselves and causing an arthritic " flare " . > > > > > > > > The down side is that in lowering my immune system, it takes me much > > longer > > to get over any type of illness or injury. It also makes me unable > > to take > > vaccinations that include the live virus. I get " vaccinated by the > > masses, " > > meaning that my chances of coming into contact and contracting such > > a virus > > is greatly reduced because the vast majority of other children have > > been > > vaccinated. I take a vitamin with folic acid so that I don't get as > > many of > > the negative side effects from the mtx such as mouth sores, hair > > loss, and > > tummy aches. > > > > > > > > It is such a strong drug that my doctor is afraid that other parts > > of my > > body - like my liver - might be hurt by it. This is why I have to > > get my > > blood taken every 6 weeks. Sometimes, I have it drawn more often if > > I'm in > > a " flare " . Mama tells me it is a good thing because it lets > > everyone know > > if I'm healthy or not. > > > > > > > > I try to be brave but it is really tough when the needle stings me! > > I cry > > and Mama holds me tight, wipes away my tears, blows my nose, and > > tells me > > over and over that she loves me and that she is so proud of me. She > > says - > > as she kisses my cheeks again and again - that I'm the bravest girl > > she > > knows. I don't know if it is true but it makes me feel good anyway. > > It > > also helps that (the nice lady that takes my blood) is so > > patient with > > me and gives me so many stickers each time! > > > > > > > > Louisville only has one pediatric rheumatologist that can treat my > > disease. > > That limited choice forces me to have to drive almost 2 hours to see > > my > > doctor in Indianapolis. She is at the Juvenile Arthritis Clinic in > > Riley > > Hospital. We used to have to go there every 6 weeks. It is close > > to every > > 3 months now that my joints have quieted. Mama says they are worth > > the > > drive because they are so knowledgeable and understanding with my > > jra. > > > > > > > > I also have an eye disease that is associated with JRA that is > > called > > uveitis. In simplest of terms, this is arthritis of my eyes. It > > is > > something I will have for the rest of my life. My case is quite > > severe > > because it affects all parts of both my eyes. I was told that > > damage is a > > guarantee. We just won't know to what degree until it occurs. > > > > > > > > Even though the diseases are associated, they are treated separately > > but in > > cooperation with one another. For example, the mtx not only treats > > my > > arthritis flares but also the flare ups of uveitis. The dosage can > > be > > adjusted according to their severity. > > > > > > > > Eye drops help when trying to keep my eyes " quiet " . I used to take > > 2 > > different steroid drops up to 6 times a day and 1 type that dilated > > my eyes. > > I took this one because the calcium created by my uveitis flare > > (otherwise > > known as band keratopathy) caused my pupils to stick. The bad news > > is that > > the steroid drops also promote cataracts and glaucoma. The good > > news is > > that they do work and have been successful at " quieting " the flare > > ups of > > uveitis that I have experienced. I now take only 1 type of drop 4 > > times a > > day. It is certainly one of my least favorite things but it isn't > > as bad as > > having my blood taken. Dare I say that I have even gotten used to > > it? > > > > > > > > My eyes have been very unstable since learning of my uveitis > > diagnosis. My > > eye sight can go from 20/20 to 20/200 and back to 20/20 within 2 > > weeks > > times. I am put on a high dose of oral steroids if my flare is > > really bad. > > This is to hit hard the swelling in my eyes and hopefully keep them > > from > > getting damaged. I know the medicine is supposed to help me but I > > just get > > so sick of having to take so much stuff. The mood swings, > > increased > > appetite, and rapid swelling/weight gain that the steroid causes is > > never > > fun. Thankfully, it works pretty quickly and I'm able to get off of > > it > > after a month or two. > > > > > > > > As you can see from reading my story, it is tough to have jra and > > uveitis. Each > > new day brings with it uncertainty. Will I wake in pain? Will I > > have > > another tummy ache? Will another joint become inflamed? Will my > > joints > > that had been quiet flare again? Will my eyes swell? Will I be > > able to see > > my family as clearly as I could the previous day? Will I have even > > more > > medicine I have to choke down so I can keep up with other kids my > > age? Or, > > will this be one of those good days that I like so much? I'm not > > sure but I > > am brave enough to find out! > > > > > > > > Please support me and others like me by participating in this > > year's > > Arthritis Foundation Walk on June 17th at Slugger Field. TeamSophie > > is > > always looking for people to walk with us and raise money for this > > worthy > > cause. If you can't donate your time? your money is always > > welcomed! > > > > > > Thank you for caring about me enough to read my story, get involved, > > and > > give support! Keep reading below for a message from the Arthritis > > Foundation. > > ________________ > > > > The diagnosis story: > > > > > > My daughter, Sophie, is one of the loves of my life. She's > > compassionate, > > adventurous, loving, intelligent, and vibrant. Sharing a life with > > Sophie > > has brought me some of my most joy filled moments. Unfortunately, > > terrifying moments also come with the package. > > > > > > > > As Sophie grew, so did her love of the outdoors and of > > any type > > of physical activity. She was always on the go! For this reason, I > > wasn't > > too alarmed when she had gone to bed perfectly " normal " but had > > woken the > > next morning with a stiff neck. She didn't complain of being in any > > pain. I > > assumed she had pulled a muscle or something and was going to give > > it time > > to correct itself. > > > > > > > > Two weeks passed and nothing improved. She could turn > > her neck > > about 20 degrees both ways. After that, her neck would stop moving > > by > > itself and her entire upper body and shoulders would move with her > > as she > > turned. I took her to see the pediatrician a week before Christmas > > 2003. > > > > > > > > Thankfully, the doctor could see that something was > > wrong with > > Sophie's neck movement. She just had no idea as to what was the > > cause. The > > two doctors she brought in and consulted with were also clueless. > > We were > > told to take Sophie home and watch for improvement or change for > > another > > week. Christmas came and went while Sophie's neck troubles stayed > > the same. > > We took her back to the pediatrician who still had no answers to > > give. > > Instead, > > we were referred to a physical therapist. > > > > > > > > I had high hopes that this would be the person with some > > answers > > as to why my daughter went over night from being such an active > > little girl > > to barely being able to move her neck from side to side. That > > wasn't the > > case. The physical therapist (PT) examined Sophie and couldn't find > > a > > reason for her stiffness. Because he wasn't pediatric, he sent us > > in that > > direction thinking a PT specializing in pediatrics might pick up on > > something he missed. That also was not the case. That PT was as > > stumped as > > the first. We were sent back to Sophie's pediatrician. > > > > > > > > Once again, the pediatrician examined Sophie. I was > > angered > > because the doctors were very complacent regarding Sophie's > > condition. It > > was assumed that because she did not complain of being in pain, hers > > wasn't > > a serious problem. They made blanket statements about waiting it > > out and > > the problem possibly fixing itself and leaving as abruptly as it > > arrived. It > > didn't seem to me that my daughter's health mystery was a top > > priority to > > that pediatric office. I am paralyzed with fear when I think about > > what may > > have happened if I would have left my daughter's care in their > > hands. The > > doctors had no other advice for us than to give it time. That is > > when I > > stepped up to the plate and made it my mission to find the cause to > > Sophie's > > neck problems. We left that pediatric office and never returned. > > > > > > > > I am very fortunate to have a husband that works outside > > of the > > home so that I can stay at home as a full-time mother. At that > > time, Sophie > > was our only child. I shutter to think just how long it may have > > taken to > > get a diagnosis if I hadn't been able to literally devote all my > > time to > > Sophie and the mystery of her neck. The next 8 months of our lives > > were > > spent looking for answers. > > > > > > > > Sophie saw countless specialists and had numerous tests > > run > > during the time we searched for answers. I'm sure I won't cover > > them all > > but here is a list of where our time was spent: We went through the > > First > > Steps process to see if Sophie qualified for any assistance or > > physical > > therapy. She did not since her difficulties didn't cause any > > developmental > > delays. That coordinator suggested we see an ENT. Sophie's ENT was > > alarmed > > at her lack of neck movement but felt it wasn't anything in his > > field of > > expertise that was the cause. He suggested we see a pediatric > > orthopaedist. > > > > > > > > > > We had an appointment with her, had X-rays taken of Sophie's neck > > and then > > returned for a follow-up with that doctor. Since the X-rays showed > > nothing, > > that doctor ordered an MRI and CT of Soph's neck and spine. When > > these > > results were in, we were told ? yet again ? that no cause could be > > found. Next > > came the pediatric neurosurgeon. He looked over all the films and > > past test > > results and couldn't find anything which led to him ordering a few > > more > > X-rays. Again, he found nothing that would cause Sophie's problems > > with her > > neck. > > > > > > > > By this time, we were supposed to follow up with the ENT who was > > shocked > > that we hadn't found any answers. He suggested we see a pediatric > > neurologist. During the time we had to wait for our appointment > > with the > > neurologist, Sophie's left ankle started swelling. We took her to > > the > > Immediate Care Center (it was a weekend, of course). They took > > X-rays, > > found nothing to be broken, wrapped her ankle, said to stay off of > > it, and > > sent us on our way. This turned out to be the best thing that could > > happen > > for Sophie. > > > > > > > > The pediatric neurologist recognized Sophie's symptoms > > (stiff > > neck and especially the swollen ankle) as those of a possible > > Juvenile > > Arthritis patient. He gave us the name of the ONLY PEDIATRIC > > RHEUMATOLOGIST > > in Louisville as well as pulled a few strings to get us an > > appointment > > fairly quickly. I had also been interviewing new pediatrician > > offices > > during all of this and had found one I really liked. I took the > > information > > the neurologist gave us, as well as all her old medical records to > > Sophie's > > first appointment with the new pediatrician. He seemed to agree > > with the > > previous doctor in that it looked as if we were dealing with > > Juvenile > > Arthritis. He ordered another battery of blood tests which > > ultimately came > > back showing that it truly was Juvenile Arthritis that had its > > clutches on > > Sophie. It was suggested by her pediatrician that we travel north > > to > > Indianapolis to the Juvenile Arthritis clinic at Riley Hospital. I > > was > > reluctant to make the 2 hour drive if we could be seen and treated > > by a > > doctor who was only 10 minutes from our home. > > > > > > > > So, we kept our previously made appointment with > > Louisville's > > pediatric rheumatologist. After looking over all of the past > > doctors' > > notes, blood test result, and films from Sophie's X-rays, MRI and CT > > scan, > > as well as examining her for himself, he confirmed that Sophie did > > have > > Juvenile Rheumatoid Arthritis. > > > > > > > > *FINALLY A DIAGNOSIS!* > > > > > > > > After 10 long and emotion filled months, we finally had > > a name > > for the mysterious beast that had taken hold of our daughter's neck > > and > > ankle. I would love to have believed it was nothing and would go > > away on > > its own. My heart and head knew that would never happen. So, it > > was time > > to regroup and focus on the fight ahead of all of us! > > > > > > > > I had some initial personality conflicts with the Louisville > > " rheumy " and > > didn't feel that Sophie's need would be best served there. So, I > > took the > > advice of my new pediatrician and took her up to Indy. After a > > thorough > > exam and discussion with the Indy doctor, the original diagnosis > > was > > confirmed. It was determined that Sophie had pauciarticular > > juvenile > > rheumatoid arthritis. > > > > > > > > It affected her neck, left foot and ankle, and right knee. She was > > immediately prescribed naproxen, methotrexate, and physical therapy. > > We > > also decided to go ahead with steroid injections directly into her > > left foot > > and ankle as well as her right knee. To do this, they needed a > > clear > > picture of all the tiny foot joints involved so we needed another > > MRI. We > > were also told to get to a pediatric ophthalmologist as soon as we > > possibly > > could. > > > > > > > > The injections went very well. They quieted the joints almost > > immediately. > > Sophie was much less grumpy, had more energy, and more mobility. > > Her neck > > was longer to come around but after much PT and hard work on her > > part, > > Sophie's neck has almost returned to normal. She still doesn't have > > full > > range of motion but only a trained eye could pick that up. > > > > > > > > The pediatric ophthalmologist appointment didn't go nearly as well. > > Sophie > > did have JRA associated uveitis. She was found to have a pretty > > severe case > > that affects all parts of both of her eyes. This is more commonly > > referred > > to as panuveitis. She was put on heavy doses of oral steroids as > > well as 2 > > differing steroid eye drops and 1 drop for dilating her eyes. We > > were told > > that ocular damage is a guarantee. We just won't know the severity > > until it > > occurs. > > > > > > > > I had never heard of juvenile rheumatoid arthritis before my > > daughter was > > diagnosed with the disease. In fact, I had never even known they > > could have > > arthritis. Now, I fight this disease daily - and for the rest of > > her life - > > along with my daughter and husband. Each time Sophie goes to bed, I > > wonder > > if she will wake in the morning with a new arthritis flare. Each > > night she > > closes her eyes, I wonder if she will be able to see as clearly > > through them > > the next time they open. > > > > > > > > Though I would never let Sophie see, I'm scared and afraid. I'm > > scared that > > her next flare might be crippling. I'm scared that my darling and > > precious > > daughter's eyes will become permanently damaged at some point. I'm > > scared > > that I will not have done enough to keep my daughter safe and well. > > However, > > I'm afraid that not enough research is being done regarding JRA. > > What is > > its cause? What is its course? What are its weaknesses? What is > > its cure? > > I find it to be pathetic that it took 10 months and countless > > doctors and > > tests before my daughter was diagnosed. > > > > > > I'm afraid that the government might be as complacent as Sophie's > > first > > pediatrician. The mentality of, " ?if she doesn't complain then it > > must not > > be too bad, " just doesn't cut it. It is bad. She is important. > > Something > > must be done. > > > > ___________________ > > > > Sorry this has been so long but I thought it might help open a > > window into > > the world of JRA. Please keep us updated as you continue your > > journey with > > your son. > > > > Weber > > Profession Mom to: > > Sophie 4 - pauci/panuveitis > > Charlie 31 weeks - fussy but oh-so-lovable > > teamsophie@... > > > > > > > > On 2/28/06, Tepper, Michele <MTepper@...> wrote: > > > > > > Hi, Christene. Yes, my son still has it. He is in a medicated > > remission > > > of sorts. When he takes his meds regularly (he is on > > methotrexate), he > > > has no symptoms. Now, he is going through a period where he is > > rather > > > non- compliant about the meds. It's one of my on going vents here > > on the > > > board and so he will have some swelling and back pain. The type > > of > > > arthritis he has is in the tendons a lot, which is where he now > > has most > > > of his problems. Again, if he would take the med better, I feel he > > would > > > have no problems. From what I understand, some teenagers go > > through > > > this. He began his at 13 (in his ankles), so we have been told he > > > probably will not outgrow it. It will always be of concern. I know > > that > > > others here, whose children were younger when it began, may > > outgrow it. > > > Usually when I say my son has arthritis people react with " Oh > > that's not > > > so bad. Everyone gets that " What they do not understand is that > > > arthritis in a child (or rheumatoid arthritis in an adult) is an > > auto > > > immune disease like diabetes. It is not osteoarthritis like many > > older > > > people get. It is so hard to see a young child unable to walk or > > run and > > > in pain. It is life altering. My son could not run for 2 years of > > his > > > life; it was too painful. Yet he continued to do sports and be as > > active > > > as possible, like the kids on this list. The kids here are real > > heroes > > > to me. They keep right on going, not letting this stop them. Once > > the > > > right " cocktail " , as we call it, of meds is found for your son, he > > will > > > begin to be able to move better. It may take time and the meds are > > often > > > strong ones, but the difference they make is often phenomenal. > > Also, one > > > thing to keep in mind - rheumatoid arthritis is a different > > disease than > > > JRA. Just because a child has JRA, does not mean that he will get > > RA as > > > an adult. As a matter of fact, my son's rheumy uses the initials > > JIA > > > (juvenile idiopathic arthritis) to differentiate between the two. > > > Michele ( 18, spondy) > > > > > > RE: NEW MEMBER TO JRA > > > > > > I can't imagine waiting 7 months to see a Ped Rheumy...once I get > > the > > > actual diagnosis of what my son has then I will be able to talk > > to > > > others who share the same disease. Yes Michele this is the place > > for me > > > to share my thoughts and feelings and thank you for the > > encouragement > > > that things will get better as much as I don't feel like it will > > at the > > > moment. Does your son still have it? When I tell people that my > > 2 year > > > old could possibly have JRA they look at me like he has some > > contagious > > > disease. I will keep you posted on what the doctor says about all > > his > > > symptoms. CHRISTENE (ALEXANDER 2 YEARS OLD) > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I have a call into the rheumy and left a message with the nurse. I asked her to have the dr. give my husband a call. We discussed everything and I think we would feel better about putting her back on mtx rather than treating her with high dose ibuprofen or tylenol. We know that the mtx worked and to us it feels like a better option. So we will see what the doc says...My husband wasn't to excited about being the one to talk with the rheumy, but he always has so many questions for me after an appointment that I figured it was his turn to step up! :-) I'll let you know what we find out. Aundrea is feeling better right now with getting 800 mg ibuprofen daily. She has jaw, shoulder, wrist and finger pain but the level of pain is much more tolerable with the ibp. Sorry to hear that Hannah is still feeling so lousy. Are you calling the rheumy back..I can't remember when her next appointment is. (Aundrea 10 systemic jra)- -- In , Beth Yohnk <yohnkmom@...> wrote: > > : > > Wondering if you were able to reach Aundrea's doctor today and what he/she suggested. Just thinkg about her as Hannah is in so much pain last night & today and the Naproxen is not helpring right now. > > > Beth Yohnk > Happy Thoughts..Be Well > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 : I'm so glad to hear Aundrea is feeling better, but I also know you worry about the Ibuprofen. Hannah is feeling better tonight. Although per the recommendation of the ped, my mom gave her an extra Naproxen after lunchtime today. That will mean she will have 750mg Naproxen today. I worry about doing that long-term. I am supposed to check in with him tomorrow. Hannah is not supposed to see the rheumy until the 27. She has her bone scan scheduled for next Wed and she did not want to see Hannah before that. We will be asking some tough questions when we see her. I feel enough tests have been done and its time for a diagnosis and an action plan. The current is obviously not cutting it. Let me know what your rheumy advised and tell Aundrea Hannah will be e-mailing soon. She was so hurting last night she ended up with ice packs on her ankles, knees & chest and then the heating pad for most of the night. sonia1md <sonia1md@...> wrote: I have a call into the rheumy and left a message with the nurse. I asked her to have the dr. give my husband a call. We discussed everything and I think we would feel better about putting her back on mtx rather than treating her with high dose ibuprofen or tylenol. We know that the mtx worked and to us it feels like a better option. So we will see what the doc says...My husband wasn't to excited about being the one to talk with the rheumy, but he always has so many questions for me after an appointment that I figured it was his turn to step up! :-) I'll let you know what we find out. Aundrea is feeling better right now with getting 800 mg ibuprofen daily. She has jaw, shoulder, wrist and finger pain but the level of pain is much more tolerable with the ibp. Sorry to hear that Hannah is still feeling so lousy. Are you calling the rheumy back..I can't remember when her next appointment is. (Aundrea 10 systemic jra)- -- In , Beth Yohnk <yohnkmom@...> wrote: > > : > > Wondering if you were able to reach Aundrea's doctor today and what he/she suggested. Just thinkg about her as Hannah is in so much pain last night & today and the Naproxen is not helpring right now. > > > Beth Yohnk > Happy Thoughts..Be Well > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Hey , you and hang tight and hang tough. Rob is a great kid and has a great foundation. He will be fine and the both of you will be as well..hugs! Donna************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Gail? When were you sleeved and hows your weight now.. just curious. hope all goes as well with me as it has with you. Re: food Date: Sunday, September 21, 2008, 5:33 AM I will hoping to get the sleeve soon(self pay), but i have decided on the sleeve after months of trying to decide between the band, sleeve or mgb. Ive been reading all the posts daily and have really beenn keeping up with things. You all recently talked about the food and head hunger and i guess until i get sleeved i blame my hunger on my belly, lol. I am getting over a really bad stomach flu/bug and with the nausenas,bad stomach ache, diarhea, acid reflux(mind u i have never had this in my life, and i wasnt even eating). I can now say i know what you mean by head hunger...... ..because as i was feeling better my stomach was not yet ready for food but i was so craving food even though i wasnt really hungy. just wanted to throw that in there,,was weird i really couldnt relate then bam i relate...funny how that works lol No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.0/1682 - Release Date: 9/20/2008 10:24 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 : I was sleeved on June 27th, 2008 and have lost somewhere around 36-37 lbs. I only weigh myself once a week so that the scale does not determine my moods. I started out at 236 and am now in the 100s! I haven't seen that in 10 years! So, for me, it is a great victory. I also haven't exercised as I should and know it would probably speed up my weight loss, but this is one of the areas that I need to work on and get more consistent with. I am allowing myself a gentle journey and being happy. I am feeling so great and am getting lots of compliments too! After a lot of research, I didn't want the band for the constant maintenance and band related issues. I am so happy that I had the sleeve! It cured so many of my issues that I didn't realize that were 'gut' or 'stomach' related. Warmly, Gail From: <kmanddj2watchtv (DOT) net>Subject: [Dr-Aceves-bandster s] Re: food @groups. comDate: Sunday, September 21, 2008, 5:33 AM I will hoping to get the sleeve soon(self pay), but i have decided on the sleeve after months of trying to decide between the band, sleeve or mgb. Ive been reading all the posts daily and have really beenn keeping up with things. You all recently talked about the food and head hunger and i guess until i get sleeved i blame my hunger on my belly, lol. I am getting over a really bad stomach flu/bug and with the nausenas,bad stomach ache, diarhea, acid reflux(mind u i have never had this in my life, and i wasnt even eating). I can now say i know what you mean by head hunger...... ..because as i was feeling better my stomach was not yet ready for food but i was so craving food even though i wasnt really hungy. just wanted to throw that in there,,was weird i really couldnt relate then bam i relate...funny how that works lol No virus found in this incoming message.Checked by AVG - http://www.avg. com Version: 8.0.169 / Virus Database: 270.7.0/1682 - Release Date: 9/20/2008 10:24 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hey gail, im hoping to have surgery end of oct if the person i asked for the loan comes thru.if not i have to wait til end of jan which is ok too but since ive made up my mind what i wa nt i want it now ya know lol, im gettn a little excited about going forward but yet very scared , im a single mom raising two kids and know my ex would not be that good at taking care of our thirteen yr old special needs child. but im doing this for us three not just for me. [Dr-Aceves-bandster s] Re: food @groups. comDate: Sunday, September 21, 2008, 5:33 AM I will hoping to get the sleeve soon(self pay), but i have decided on the sleeve after months of trying to decide between the band, sleeve or mgb. Ive been reading all the posts daily and have really beenn keeping up with things. You all recently talked about the food and head hunger and i guess until i get sleeved i blame my hunger on my belly, lol. I am getting over a really bad stomach flu/bug and with the nausenas,bad stomach ache, diarhea, acid reflux(mind u i have never had this in my life, and i wasnt even eating). I can now say i know what you mean by head hunger...... ..because as i was feeling better my stomach was not yet ready for food but i was so craving food even though i wasnt really hungy. just wanted to throw that in there,,was weird i really couldnt relate then bam i relate...funny how that works lol No virus found in this incoming message.Checked by AVG - http://www.avg. com Version: 8.0.169 / Virus Database: 270.7.0/1682 - Release Date: 9/20/2008 10:24 AM No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.0/1682 - Release Date: 9/20/2008 10:24 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2009 Report Share Posted July 23, 2009 Here is the websitehttp://www.iherb.com/Alvita-Teas-Pau-D-Arco-Tea-Bags-Caffeine-Free-24-Tea\ -Bags-2-12-oz-60-g/3434?at=1 Quote Link to comment Share on other sites More sharing options...
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