Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Hi Sandi, Sometimes when we give Madi her shot it bleeds just a bit, but not much more than a spot on the bandaid. Sometimes a little of the mtx leaks out before I can get the bandaid on, and sometimes there is a bit of yellow discoloration right under her skin where we gave her the shot. Sometimes she gets a little bruise at the site, and sometimes not. Don't know what makes the difference, but my husband always says- " well, that's gonna leave a bruise " so he must be able to feel it-he gives her the shots, I hold her down. I'm sure you are doing just fine-you'll get used to it-and kudos to you for trying the shots out on yourself, you wouldn't catch me doing that! Tracey & Madi (17mo systemic) > > Tonight I gave Hunter her MTX shot. First time for me - her 80 something > but it bled alittle and the bandage was just alittle bit yellow. When the > nurse did it it never bled - what did I do wrong. It wasn't a lot of blood - but > it still bothers me. Sandi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Sandi...good for you, you did it! :-) I know when Bob has given Aundrea's shot there has been a couple of times when there was blood. As far as the yellow stuff thats just a little of the mtx..Its ok. Aundrea has had occasions where she will have a quarter size area thats pale yellow from where the injection was given. It fades away within a day or sooner. It sounds to me like you did awesome. Are you using insulin syringes? How did Hunter handle nurse mom? (Aundrea 11 systemic jra) > > Tonight I gave Hunter her MTX shot. First time for me - her 80 something > but it bled alittle and the bandage was just alittle bit yellow. When the > nurse did it it never bled - what did I do wrong. It wasn't a lot of blood - but > it still bothers me. Sandi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Hi Sandi, I think it'll be fine. That will happen very occasionally when is having his injections, too. Was it in the abdominal area? Aloha, Georgina Questions Again Tonight I gave Hunter her MTX shot. First time for me - her 80 something but it bled alittle and the bandage was just alittle bit yellow. When the nurse did it it never bled - what did I do wrong. It wasn't a lot of blood - but it still bothers me. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 When I had to give my son his injections of a steriod, I was told to put my finger over the spot where I gave the injection immediately after I pulled the needle out. It helps the stuff stay in, and since his medication was $100 PER shot, that stuff was like gold. Re: Questions Again Hi Sandi, Sometimes when we give Madi her shot it bleeds just a bit, but not much more than a spot on the bandaid. Sometimes a little of the mtx leaks out before I can get the bandaid on, and sometimes there is a bit of yellow discoloration right under her skin where we gave her the shot. Sometimes she gets a little bruise at the site, and sometimes not. Don't know what makes the difference, but my husband always says- " well, that's gonna leave a bruise " so he must be able to feel it-he gives her the shots, I hold her down. I'm sure you are doing just fine-you'll get used to it-and kudos to you for trying the shots out on yourself, you wouldn't catch me doing that! Tracey & Madi (17mo systemic) > > Tonight I gave Hunter her MTX shot. First time for me - her 80 something > but it bled alittle and the bandage was just alittle bit yellow. When the > nurse did it it never bled - what did I do wrong. It wasn't a lot of blood - but > it still bothers me. Sandi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 Firstly, Sandi- GOOD ONYA for having a go. I give Bayly his Mtx into the tummy. Ditto on the little blood spots sometimes after taking the needle out. Although, I hit a blood vessel a few weeks back and it bruised, (about 1cm diameter) But my diabetic niece who gives herself Insulin, often gets that, so I didn't panic (just felt way guilty)! I always press on the spot with my finger straight afterwards, to reduce bleeding, and Bayly says it helps a little with the 'sting'. Haven't noticed any Mtx leaking, I must say. Jo Bayly, 4, Extended Oligo PS: My little daughter Violet told me the other morning that she had to have needles when she was 'a big girl', like Bayly does. Here I am, trying to explain Arthritis to yet another 2-year-old.... *SIGH* http://www.kidsgetarthritistoo.org.au Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 why would debby not want us to have access to the website and all of the information? I dont understand how this happened. any suggestions sue The good Lord gave you a body that can stand almost anything. It's your mind you have convince~~Vince Lombardi Sue ________________________________________________________________________________\ ____ Luggage? GPS? Comic books? Check out fitting gifts for grads at Search http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2007 Report Share Posted July 9, 2007 > > Hi Bee! > > I feel so sorry for you because of this website problem. I send you > strength! And I'm not expecting you to answer now, please take care of yourself!! Hugs! ==>Hi Kaisa. Thank you so much. Now that this is behind me I can concentrate better on getting a job (#1) and other goals I have such as writing a book. I will get another website too. I need to take one step at a time. > ............. > > Hi all! > > Could someone help me with these questions I have,please?! > > 1. I eat very little vegetables and that's why Bee recommended me to > have 2 grams of potassium citrate. Does this mean 2 grams of potassium citrate or 2 grams of potassium? I guess it's potassium, so I should propably take 5,6 grams of potassium citrate.. ==>That means 2 grams (2,000 mgs) of potassium citrate. You do not need 5 or 6 grams, particularly because you are cutting out salt. > > 2.I've been using betaine hydrocloride and currently I'm taking 11 > tablets and there is absolutely no evidence of excess, no heartburn or anything. How many tablets people usually take? I can't afford taking so many of them with my each meal..would it help if I took some other enzymes too? ==>Some people need that many for awhile. There are other things that also increase stomach acid, i.e. lemons (you can have the electrolyte drink without the salt), proteins, fats, spices, etc. If the mixture of foods, water and stomach acid going from the stomach into the first part of the intestines contains enough stomach acid it triggers the pancreas to release other digestive enzymes. > > 3.I have calculated ratios using my height and the result was: > proteins 63 grams > fats 158-220 grams > carbs 50 grams > > Bee recommends ratio of 75% fat and 25% protein if person eats no > carbs. How do I count this ratio? Am I supposed to use the grams or the energy they offer when counting? ==>Find out how many calories your size of body requires per day and translate that into grams like this: Translate calories above into grams per this example: Example: Amount of calories per day = 2,000 Protein @ 75% of total calories = 2,000 x 75% = 500 Fat @ 25% of total calories = 2,000 x 25% = 1,500 To find out the number of grams: Protein above divided by 4 - 500 divided by 4 = 125 protein grams Fat above divided by 9 - 1,500 divided by 9 - 167 fat grams To find out how many grams are contained in your foods go to: http://www.fitday.com or use some other type of Nutritional Calculator. Do not translate grams to ounces or any other type of weight or measurement because it doesn't work that way. 1. Start with the size, amount or weight of food you are going to eat and find the amount of grams of each food group it contains. 2. Work back and forth to determine the size, amount or weight you need to eat of different kinds of foods in order to obtain the correct ratios. For more help about using fitday.com see this article: http://tinyurl.com/3babnw Cheers, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi ..so sorry you are all going thru this. We are going thru the same thing. We have come to realize that SoJA is not a quick diagnoses. Since it is a desease of exclusion...it is a long process. The doctor that used to be at Cleveland Clinic is who we have been seeing and he told us the other day that Anni's symptoms were not typical for systemic jra but when asked if he has ever seen it present like this the answer was yes. It is a wait and see thing. Since she is continueing to have a " fever of unknown origin " we are pressing to have them rule out the scarey stuff. If I were you..I would take him to a teaching hospital. Hang in there..it is hard to watch and breaks a mommys heart to see her baby suffering! Hugs..Flower questions again I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.7/1233 - Release Date: 1/19/2008 6:37 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi - I can only imagine how frustrating this is for you... and I have heard this story many times with kids with JRA. It's often very difficult to get that diagnosis. We were fortunate - Caitlin's disease progressed so quickly over the course of two weeks, that her pediatrician had her admitted to the hospital. By that time, she was spiking 105 degrees several times, usually in the afternoon and evening. She could no loger walk or move her head up or down or side to side. Her voice was high pitched (like on helium) because of the inflammation in her neck. Over the course of five days she was seen by several specialists and had an MRI, spinal tap, x-rays, bone scans, blood tests, echo and EKG. They ruled out cancer and meningitis... and the pediatric rheumatologist confirmed a diagnosis of systemic JRA. They started her on MTX and prednisone immediately and within 24 hours, she was up and playing. We did have a slight side track within the first two weeks. Due to swelling around her heart, we had to see a pediatric cardiologist. After examining her and reading her reports, he said he wanted to go to the hospital and read the rest of her chart. He called me later that day and said that she did not have JRA, but rather rheumatic fever. He explained that a short course of antibiotics would return her to perfect health. My family and I all cried with relief... but in my gut, I knew it was too good to be true. So we had a full set of second opinions - a new pediatric rheumy, oncologist and cardiologist. They all confirmed the original diagnosis and we haven't looked back since. For your other questions - I haven't been to Cleveland, but I believe they have a pretty good rep. I encourage second opnions - this disease has so many variables and faces, the more experience behind the diagnosis - the more confortable you will be facing the treatment plan. When Caitlin was flaring very badly - she often never got out of bad at all. Other times, she would seem to come to life after lunch time. And the fact that she would seem to do fine for awhile and then collapse with fatigue, fever and pain is one of the things that made the beginning so frustrating. You would never know if it was going to be a good day... or if things were going to go downhill. On the plus side - if you get a diagnosis and begin treatment - I promise you that better days will be ahead. Hang in there! Colleen mom to Caitlin, 9, systemic nurse0300 <nurse0300@...> wrote: I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 we are fuo's too that is the only diagnosis that they have made and stuck too. where are you located we are thinking of having someone else just take a look and see what they think. we are seeing oncology again on the 28th to rerule out the scarry stuff ugh...this is really starting to take a toll on my health as well i am just hoping that all of this stress dosent put me into a flare my poor husband would probably go off of the deep end LOL nah he is a good one but a person can only take so much. cynde lee <blooms@...> wrote: Hi ..so sorry you are all going thru this. We are going thru the same thing. We have come to realize that SoJA is not a quick diagnoses. Since it is a desease of exclusion...it is a long process. The doctor that used to be at Cleveland Clinic is who we have been seeing and he told us the other day that Anni's symptoms were not typical for systemic jra but when asked if he has ever seen it present like this the answer was yes. It is a wait and see thing. Since she is continueing to have a " fever of unknown origin " we are pressing to have them rule out the scarey stuff. If I were you..I would take him to a teaching hospital. Hang in there..it is hard to watch and breaks a mommys heart to see her baby suffering! Hugs..Flower questions again I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.7/1233 - Release Date: 1/19/2008 6:37 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 you mentioned something in your post that made me go hummm. we to were told that they thought it was rheumatic fever but he didnt meet all of jones's criteria. what made me go humm was he now has a heart murmur that he did not have before i need to make a mental note to see if they think that a wcho will tell us if he is having any pericarditis which also from my research goes hand in hand with systemic. > I have a few questions to maybe help me with this waiting on a > diagnosis thing, if i asked these before please forgive me! LOL I > am a little nutso right now. LOL > 1.) since your childs first sign that there was something wrong how > long before you got a diagnosis > 2.) were they sure of this diagnosis right away or change their minds > 3.) has anyone thought of seeing if St Jude did any research for jra > and has anyone tried getting in there if so. > 4.) has anyone been treated at the Cleveland clinc > 5.) do you encourage sencond opinions? > 6.) with jra does your child at times seem ok them the next 5 > minutes they are in alot of pain > 7.) during a flare how long before you chils is up and moving during > the day? Caleb on friday it was 130pm before he could walk then it > was with a severe limp and today is a repeat of yesterday. now they > want to try him off the naproxyn and this is what is happening i > feel horrible for him and as a parent. > > I guess I am just getting upset with all of the road blocks and are > looking to my jra moms and dads and grandmas for help. please give > me any advise. I am just having a hard time with stress and the not > knowing right now! > > Thanks in advance for all of your responses. > > and Caleb 7 ? systemic JRA > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 We are in California...Dr Singsen is at Children's Hospital in Oakland...he was at Cleveland clinic for 8 years. Sounds like Coleen had a great team that sorted things out right away. It all depends on the sypmtoms and doctors. Good Luck, Flower questions again I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.7/1233 - Release Date: 1/19/2008 6:37 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 We are in New York and Jordan was in and out of Strong Hospital, a very well known teaching hospital, for six months before I took her to Boston Childrens Hospital and received a diagnosis.Originally we were diagnosed with allergies , then stills, then allergies again then non-hodgkins lymphoma.... she endured 2 surgeries and many CT scans and bloodwork for every imaginable disease there is, including AIDS and every genetic test that can be done,they were positive about the cancer on a friday night and set to do bone marrow and spinal tap the following monday and start chemo on wednesday,but had a change of mind come monday... thats what sent us to Boston, I needed answers.Jordan was running non stop fevers, staying around 105 losing over a pound of weight a day, she dropped 20 pounds in 2 weeks and was covered in a rash that never went away....The doctors here were stumped, since she had no joint pain, and still doesnt.We went to Boston and the rheumatologist diagnosed her in 5 minutes.. she started kineret and has done quite well on it, we hit bumps in the road , ending up in the hospital here since Boston is so far away and Jordan is still a mystery to them. But she is nowhere as bad as she was the entire year of 2006.All I can say is go with your gut and if you dont believe in the doctors you have find one you do believe in, even if you need to travel to another state, your child is worth it. a and Jordan(9 systemic) cynde lee <blooms@...> wrote: We are in California...Dr Singsen is at Children's Hospital in Oakland...he was at Cleveland clinic for 8 years. Sounds like Coleen had a great team that sorted things out right away. It all depends on the sypmtoms and doctors. Good Luck, Flower questions again I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.7/1233 - Release Date: 1/19/2008 6:37 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 1.) since your childs first sign that there was something wrong how long before you got a diagnosis My son had strep two weeks prior to onset (rash and high fevers were onset) He had a very sore throat 2.) were they sure of this diagnosis right away or change their minds No, they orinially thought it was HSP, then vascilitis, then ruled out cancer via bone marrow biopsy. 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. No, don't know 4.) has anyone been treated at the Cleveland clinc No 5.) do you encourage sencond opinions? YES!! Getting a second opinion does not mean you distrust your current doctor or think he/she is bad. In our case, getting the second opinion meant a change of meds that allowed by son to return to " almost " normal, he can now play a sport (something he hadn't done in almost 4 years) If we didn't get that second opinion, we would still be in a zone of feeling better but not under control, and most certainly not having the quality of life he deserves. 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain When he was with the first doctor and only on methotrexate, this was common. Now that he is also taking enbrel, we don't see this at all anymore. 7.) during a flare how long before you chils is up and moving during the day? It varies, but now that we are on the right meds it is much quicker. Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. If your child is feeling pain, and it has limited his basic activities of daily living, then the meds aren't doing the job. Talk to your doctor, seek a second opinion and keep a journal. Sometimes you can feel like you are alone, but your not. Just find that right doctor who can help. [] > > I have a few questions to maybe help me with this waiting on a > diagnosis thing, if i asked these before please forgive me! LOL I > am a little nutso right now. LOL > 1.) since your childs first sign that there was something wrong how > long before you got a diagnosis > 2.) were they sure of this diagnosis right away or change their minds > 3.) has anyone thought of seeing if St Jude did any research for jra > and has anyone tried getting in there if so. > 4.) has anyone been treated at the Cleveland clinc > 5.) do you encourage sencond opinions? > 6.) with jra does your child at times seem ok them the next 5 > minutes they are in alot of pain > 7.) during a flare how long before you chils is up and moving during > the day? Caleb on friday it was 130pm before he could walk then it > was with a severe limp and today is a repeat of yesterday. now they > want to try him off the naproxyn and this is what is happening i > feel horrible for him and as a parent. > > I guess I am just getting upset with all of the road blocks and are > looking to my jra moms and dads and grandmas for help. please give > me any advise. I am just having a hard time with stress and the not > knowing right now! > > Thanks in advance for all of your responses. > > and Caleb 7 ? systemic JRA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 > > I have a few questions to maybe help me with this waiting on a > diagnosis thing, if i asked these before please forgive me! LOL I > am a little nutso right now. LOL > 1.) since your childs first sign that there was something wrong how > long before you got a diagnosis --- 4 months and 12 different doctor visits! > 2.) were they sure of this diagnosis right away or change their minds --- text book case sor Pauci jRA, so knew then they had the right dx. > 3.) has anyone thought of seeing if St Jude did any research for jra no, but that's a good idea. > and has anyone tried getting in there if so. > 4.) has anyone been treated at the Cleveland clinc > 5.) do you encourage sencond opinions? YES!!! My daughter would not be in a " medicated remission " today had we stayed with the 1st Rheumy. I feel as if God nudged me HARD to get the second opinion. I couldn't sleep after another bad appt. w/ our doc. It was the next day that I called The Arthritis Foundation to try to get help. A dear mother of a child w/ JRA called me and gave me the name of our next Rheumy (she's also in this group). I truly believe she was our Angel. Everything changed for the better after our 2nd Rheumy visit, a yr. ago. > 6.) with jra does your child at times seem ok them the next 5 > minutes they are in alot of pain ---- This used to be everyday for us before going on Methotrexate. > 7.) during a flare how long before you chils is up and moving during > the day? She could only walk after about noon some days and then it wasn't until around 3 p.m. or even 5 p.m! This was from age 2 to almost her 3rd birthday. Very hard as a mom to sit by and wait for Naprosyn to work, and it NEVER did. Caleb on friday it was 130pm before he could walk then it > was with a severe limp and today is a repeat of yesterday. now they > want to try him off the naproxyn and this is what is happening i > feel horrible for him and as a parent. Weird since it can take weeks to even start working. Seems like they haven't really given it enough time. But the flipside, don't wait too long if a med is obviously not working either. Ibuprofen was way more effective for Isabelle, so you have to watch each child CAREFULLY. Many Rheumy's are just too busy to put in the necessary energy to prescribe the right med. They too often use a " one size fits all " approach which is severely out-of-date now. > > I guess I am just getting upset with all of the road blocks and are > looking to my jra moms and dads and grandmas for help. please give > me any advise. I am just having a hard time with stress and the not > knowing right now! > > Thanks in advance for all of your responses. > > and Caleb 7 ? systemic JRA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 : I'm going to answer your questions, but please know that Hannah is not the norm as far as this goes I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis...it's been 2 years and we still do not have a real diagnosis 2.) were they sure of this diagnosis right away or change their minds..no one can agree on Hannah 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so....no but we've talked about going to Mayo Clinic 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? YES!!!! (AND MORE IF NEEDED) 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain...yes this is our vicious cycle 7.) during a flare how long before you chils is up and moving during the day? it depends. When she wakes up hurting a really hot bath for 20 minutes can do wonders. Other times she might just sleep really late and take her pain meds. She always pushes herself to move in the morning because she knows if she doesn't she will be hurting and stiff longer than just getting going. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now!.....Just remember what I told you last week. We are our kids advocates and we can't give up on them. It is a frustrating process, but I KNOW there is a doctor out there for each and every one of our kids to help them. Hang in there. Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA Sending prayers & happy thoughts, Beth :-) questions again I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 1.) since your childs first sign that there was something wrong how long before you got a diagnosis - 7 months 2.) were they sure of this diagnosis right away or change their minds - the 2 orthopedists he saw kept treating him for some kind of injury; rheumy was sure right away that it was arthritis 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so - someone on the list in the past did talk about going, but I am not sure if they did. I have often thought this would be a good idea; after all they are not just a cancer center, but a research hospital as well with rheumy's on staff. 4.) has anyone been treated at the Cleveland clinc - not Chris 5.) do you encourage sencond opinions? - yes, it was the third dr (not including his ped) that finally gave the correct diagnosis 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain - yes, for it is usually worse in the morning or if he has had a particularly physical day at work. 7.) during a flare how long before you child is up and moving during the day? When is stiff, it can take about an hour or so to loosen up in the morning. A warm shower would always help that, or doing his PT in warm water. His jra started primarily in his ankles and feet and soaking his feet in warm water and rotating them in the morning was how we would get him loose for school. If he comes home after work and is sore, nothing much beyond a hot shower can help. He is usually stiff and sore the rest of the day. FYI - my son is no longer on meds by his own choice; this is unfortunately something some teens and young adults decide. When was young and on meds, they really helped. Once we found the correct mix for him, he did really well. He was on Celebrex and ultimately methotrexate. Other things did not work as well. He was eventually weaned off the Celebrex, as the rheumy did not want him on an NSAID if it could be avoided. He was doing well on the mtx, when he decided he was tired of the whole thing at 18. He is now talking about heading back to a rheumy as his symptoms have become troublesome again. Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of nurse0300 Sent: Saturday, January 19, 2008 7:30 PM Subject: questions again I have a few questions to maybe help me with this waiting on a diagnosis thing, if i asked these before please forgive me! LOL I am a little nutso right now. LOL 1.) since your childs first sign that there was something wrong how long before you got a diagnosis 2.) were they sure of this diagnosis right away or change their minds 3.) has anyone thought of seeing if St Jude did any research for jra and has anyone tried getting in there if so. 4.) has anyone been treated at the Cleveland clinc 5.) do you encourage sencond opinions? 6.) with jra does your child at times seem ok them the next 5 minutes they are in alot of pain 7.) during a flare how long before you chils is up and moving during the day? Caleb on friday it was 130pm before he could walk then it was with a severe limp and today is a repeat of yesterday. now they want to try him off the naproxyn and this is what is happening i feel horrible for him and as a parent. I guess I am just getting upset with all of the road blocks and are looking to my jra moms and dads and grandmas for help. please give me any advise. I am just having a hard time with stress and the not knowing right now! Thanks in advance for all of your responses. and Caleb 7 ? systemic JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Michele - Your comment about Chris's symptoms starting with ankle and foot pain raises a question for me. Grant has been diagnosed with PsA but recently this has come into question because a new derm that we saw said he didn't have psoriasis... It has got me to research a little more about spondy. Our rheumy said since we don't have an immediate relative with it then he can't diagnose it. Anyways, Grant started with a swollen ankle and now has heel pain. What kind of foot pain did have and does he still have it? Just curious if it is similiar to Grants. & Grant/10/PsA?/Uveitis > > 1.) since your childs first sign that there was something wrong how > long before you got a diagnosis - 7 months > 2.) were they sure of this diagnosis right away or change their minds - > the 2 orthopedists he saw kept treating him for some kind of injury; > rheumy was sure right away that it was arthritis > 3.) has anyone thought of seeing if St Jude did any research for jra > and has anyone tried getting in there if so - someone on the list in the > past did talk about going, but I am not sure if they did. I have often > thought this would be a good idea; after all they are not just a cancer > center, but a research hospital as well with rheumy's on staff. > 4.) has anyone been treated at the Cleveland clinc - not Chris > 5.) do you encourage sencond opinions? - yes, it was the third dr (not > including his ped) that finally gave the correct diagnosis > 6.) with jra does your child at times seem ok them the next 5 > minutes they are in alot of pain - yes, for it is usually worse > in the morning or if he has had a particularly physical day at work. > 7.) during a flare how long before you child is up and moving during > the day? When is stiff, it can take about an hour or so to loosen > up in the morning. A warm shower would always help that, or doing his PT > in warm water. His jra started primarily in his ankles and feet and > soaking his feet in warm water and rotating them in the morning was how > we would get him loose for school. If he comes home after work and is > sore, nothing much beyond a hot shower can help. He is usually stiff and > sore the rest of the day. FYI - my son is no longer on meds by his own > choice; this is unfortunately something some teens and young adults > decide. When was young and on meds, they really helped. Once we > found the correct mix for him, he did really well. He was on Celebrex > and ultimately methotrexate. Other things did not work as well. He was > eventually weaned off the Celebrex, as the rheumy did not want him on an > NSAID if it could be avoided. He was doing well on the mtx, when he > decided he was tired of the whole thing at 18. He is now talking about > heading back to a rheumy as his symptoms have become troublesome again. > Michele ( 20, spondy) > > > > > > > > ________________________________ > > From: [mailto: ] On > Behalf Of nurse0300 > Sent: Saturday, January 19, 2008 7:30 PM > > Subject: questions again > > > > I have a few questions to maybe help me with this waiting on a > diagnosis thing, if i asked these before please forgive me! LOL I > am a little nutso right now. LOL > 1.) since your childs first sign that there was something wrong how > long before you got a diagnosis > 2.) were they sure of this diagnosis right away or change their minds > 3.) has anyone thought of seeing if St Jude did any research for jra > and has anyone tried getting in there if so. > 4.) has anyone been treated at the Cleveland clinc > 5.) do you encourage sencond opinions? > 6.) with jra does your child at times seem ok them the next 5 > minutes they are in alot of pain > 7.) during a flare how long before you chils is up and moving during > the day? Caleb on friday it was 130pm before he could walk then it > was with a severe limp and today is a repeat of yesterday. now they > want to try him off the naproxyn and this is what is happening i > feel horrible for him and as a parent. > > I guess I am just getting upset with all of the road blocks and are > looking to my jra moms and dads and grandmas for help. please give > me any advise. I am just having a hard time with stress and the not > knowing right now! > > Thanks in advance for all of your responses. > > and Caleb 7 ? systemic JRA > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2009 Report Share Posted May 30, 2009 I would make the trip to see Dr. Goldberg. With my son, his lab results have improved a lot over time (he used to have a Herpes I/II level that was 25 times the normal result.) But he still has to improve with his allergy cells although we are on a restricted diet.  My son was on the severe end when we started at 3 years old. He is 10 now and considered higher functioning although he is a work in progress regarding being able to talk more with his peers and making friends. He is doing many things now that I never would have imagined such as almost keeping up with grade level except reading, riding a bike for miles, playing basketball with us, games, etc. (And it is not torture any more trying to get him to do these things. He loves these activities!)  Dr. Goldberg will help you bring the viruses down and get your child healthier. Pediatricians do not know how to interpret these lab results and I believe a lot of them do not think much about the abnormal findings on the lab results. We are lucky that are pediatrician will write the prescriptions if Dr. Goldberg faxes them first. Not all lab tests will show what is going on because there are not tests for all that. He will also give you excellent advice on how to catch your child up developmentally. But as the parent, be prepared for a lot of work, progress & regressions, and difficulties. But once you start to see your child coming along, it is so worth it.  Good luck and feel free to email me back if you have any questions.  Lynn From: neidhardtashley <neidhardtashley@...> Subject: Questions again Date: Friday, May 29, 2009, 7:08 PM I just got back my son Herpes simplex IM back and EB both were negative. I belive someone said that is common for the tests to be negative. I have some of the other tests done in the past. Ex b12- low intracell high in serum, folic acid normal, ferritin low normal? Can someone share some of their labs and improvements they have seen Can my local Dr order the same meds Dr Golberg would order ( I live in Ohio) I am thinking he would be the best to go to and make the trip. I hesitate to make the trip and the protocol not help my son. My son is very severe and all Dr;s say he is a hard case Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2009 Report Share Posted May 30, 2009 The only viral titer that was off in my daughter was her HHV6, and it wasn't as high as I have heard people say on this list. I was discouraged that my daughter couldn't be helped when we went to the MD in NY. Her B12 was too high, her folate was too high, her hematocrit too high. Her IgE was high too. Her NK cells were too high. (The opposite of most) You can't totally trust the tests, because if the immune system is dysfunctioning, it wont make antibodies to viruses or bacteria or yeast. We haven't yet done another viral panel on her, it hasn't even been a year since we started but I have seen huge improvements with my daughter. We had the typical " die offs " and she improved medically/physically. Now we are dealing with her totally out of control allergy responses with Intradermal P/N treatment. Thats a whole other story! Sometimes the only way you can know for sure is trying it out. I know it is expensive but I believe that it could help most kids diagnosed with ASD. If you don't want to go as far as CA you can go to the NY office. www.nnyautismcenter.com hope this helps you! > > I just got back my son Herpes simplex IM back and EB both were negative. I belive someone said that is common for the tests to be negative. I have some of the other tests done in the past. Ex b12- low intracell high in serum, folic acid normal, ferritin low normal? Can someone share some of their labs and improvements they have seen Can my local Dr order the same meds Dr Golberg would order ( I live in Ohio) I am thinking he would be the best to go to and make the trip. I hesitate to make the trip and the protocol not help my son. My son is very severe and all Dr;s say he is a hard case > Quote Link to comment Share on other sites More sharing options...
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