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Stephanie
Posted Saturday, November 01, 2003 2:14 PM


 

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CynthiaJ, The main reason they put cast's on my daughter's legs is because she had such a bad flare for such a long time that she was unable to straighten her legs out. (If she was sitting on the floor her legs were slightly bent at the knees and PT was not going to correct this problem). So after the injection procedure the therapist casted her, then when they dried they cut the casts on both sides so we could actually take them off. They still wanted her to go to PT but other than that she wore them night and day. She even walked in the casts. Well the whole thing worked she finally was able to straighten her legs! It was such a nightmare to watch her go through that. She does have some deformity in her left knee but I dont believe that was the reason for the casts. Stephanie
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CynthiaJ
Posted Saturday, November 01, 2003 4:38 PM


 

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Stephanie- Mandy is going through the same thing your daughter did. Her left leg is bent, with a constant limp and she can not straighten her knee. It is deformed now as well so we are doing the injection. If the swelling goes down after they are going to fit her for a brace. This type she will only have to wear at night. PT seems to be helping with the morning stiffness but she can not bend her knee without screaming in pain. All seemed to be slowing down the last few days until this morning. Colon problems are flaring fast today and she is losing blood once again. I can't stand fighting both these conditions. I cant treat one without flaring the other. It all just gets old. She sees both doctors on the 12th so hopefully things will improve. Terry- I have learned so much from you already. PLEASE dont stop posting !!! I am reading through the old post again just to make sure I have not missed anything. By the way--- Cynthia is my legal name, everyone just calls me Cindy. Take care-- Prayers to all
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TerryB
Posted Saturday, November 01, 2003 6:28 PM


 

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Cynthia, Does your daughter have ulcerative colitis? I can't seem to find anything about "allergic colitis. It is Remicade that has been used for both Crohn's disease and rheumatoid arthritis in adults. It is used "off-label" for kids. You probably have read all about this already. What I'm wondering is if any of the "biologics" (like Enbrel or Remicade) have been studied for the form of colitis that your daughter has.
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Stephanie
Posted Saturday, November 01, 2003 6:59 PM


 

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Cindy, We also had a brace. It was made of hard plastic that she wore at night. It worked well and she didnt seem to mind it. But then when she had a bad flare thats when they casted her. While she was still under anesthesia the DR was able to straighten her leg w/ out it being painful. You really have a difficult situation dealing with JRA and the colon problems. I dont know if you are open to the idea of seeing a holistic DR but since your daughter is unable to take meds maybe they could find another approach. We see a Homeopathic Dr and I feel its been benificial for us. Just an idea. I have also chossen not to vaccinate my daughter right now because she is doing so well. I feel it may compromise her immune system to much. Stephanie Oh yeah, I had never heard about the facial scaring side effect. How does that happen? If they get a cut or scrape it leaves a scar? Is it permanent?
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AmyB
Posted Sunday, November 02, 2003 7:01 PM


 

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Stephanie - My daughter and I consider ourselves experts on facial scaring. The facial scaring is a side effect from medicines like Naprosyn. They call the side effect naprosyn induced sulfa profuria. (That's how I spell it, not the doctors. One day, I might find the true spelling.) The facial scarring is really just very "fryable" skin. It occurs on face and hands. More often in summertime when the sun is out. When my daughter has the slightest trauma to her face, like a sudden movement of a finger, sticker, object or brush, it can turn into a scar. The places immediately scab over. In the beginning we didn't even realize it was happening. A scar/scab would appear and we would try to figure out what it was from. This side effect happens to 10% of those taking Naprosyn. Mostly fair skinned, blue eyed blond hair girls. It happened after 10 monthes on Naprosyn. There is no permament damage and the scars will eventually heal to freckles. We switched to trilicyate medicine for her inflamation control of the arthritis. While we have really struggled with this side effect, her arthritis is under somewhat of control. The controlling of the arthritis is more important than the terribile side effect. The most important thing is to recognize this side effect, so that meds can be switched. The skin will usually get better after a month or two off of the Naprosyn; however, my daughter seems to be an extreme case in that we are battling this problem monthes after being off Naprosyn. If you need to know more, let me know. Take care, Amy
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Stephanie
Posted Sunday, November 02, 2003 7:42 PM


 

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Amy, Thanks for the info! Do you know if its just with the naprocyn or can it hapen with sulindac too? She recently fell at school and got a pretty good scrape on her head now it turned white like she lost her pigment color. It looks real wierd! I looked sulindac up but it didnt say it was one of the side effects. Cindy, I had Alexa allergy tested by the homeopathic doctor that we see because I wanted to see if there was any correlation with food allergies and arthrits. It was a real pain in the butt because she came back "reactive" to a lot of foods. So for 3 months I had to prepare ALL her foods for her. One of her reactive foods was corn which is in EVERYTHING. For some people corn can be as bad as the peanut allergy. The reason Im telling you this is you may want to have this type of allergy test done. Its called ALCAT allergy test. Not a lot of DRs do it. They drew a couple of viles of blood and they sent it to a lab in Florida. It is a FOOD allergy test and its pretty accurate. We gave up the rective foods for 3 months than added them back in one at a time. She has never had any past problems with food but I just wanted piece of mind to know that the arthrits was not coming from a specific food. Stephanie
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CynthiaJ
Posted Sunday, November 02, 2003 8:51 PM


 

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To all- Yes, Mandy has been diagnosed with two auto-immune diseases. So far, according to the ped. Gastro, they are not related. The peds Rheumy thinks they are. Irritable Bowel Syndrom, Irritiable Bowel Disease, and Crohn's are all associated with JRA. There is no published medical data on allergic colitis and JRA. The two doctors and the immunologist to talk about her case after we have been there. Its really a mystery that both would present and seem to be related. They will probably publish a paper on her by the time she's 10 !!! The colitis started first and I was nursing her. I dont drink milk or eat dairy because I am allergic to that as well. The others I only eat in moderation and small quantities. I was on the same diet as she is from the time I was 5 to 13 with the exception of soy. Rheumatiod arthritis does run on my mothers side. She has it in her hands and feet; my great-grandmother had it all over and was in a fetal position by the time she passed. On my husbands side there is arthritis, lupus, crohns and ISB ( his sisters each have one of these). The best I can make of the whole situation is she just got nailed genetically. I can always tell when she reacts to something with her colon. She gets terrible, awful smelling diahrea and the blood is visible. It was easier to tell when she was in diapers but now I can still see it when she wipes. Corn does not seem to bother her but orange vegetables, citrus fruit, red fruit (strawberries cause hives) are all bad. There is no message board that I know of. There was a site that you could put your email address on and I have had about 20 emails from parents. They all just want information because it is not out there. So far most of the children have outgrown the problem and are doing fine. Amy- I will keep that in mind about blue eyed, blond girls if they ever put Mandy on Naprosyn. That is what she looks like. Thanks again for letting me vent- Cindy
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