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ritzbit
08-10-2011, 11:04 AM
How likely is it, when Im the ONLY one in my entire huge family that has lupus or any other autoimmune disoreder, that my brother might also have something wrong? Its been coming up more and more frequently in whispers between me and my mom. He gets really defensive about it if he hears us talking about it. He had an episode long before I was diagnosed where he was at Childrens for a week with an extremely high fever and they kept checking him for JRA but they never found anything wrong with him and he literally got better over night one day and they sent him home. He has also been the one to always have lung problems. Had everything you can think of when he was little then developed asthma. Other than that he was always fine though, no strange aches or pains. That is up until maybe a year ago. The back of his ankle was hurting really bad all the time and made it hard for him to do his taekwondo. Doctor said it was growing pains. It eventually went away. I think what started making my mom concerned was when he would go to ride his bike and come right back saying he was too sore; he loves riding his bike. He heard me and my mom saying stuff when we were at the pool the other day when he was saying his ankles hurt to keep jumping off the diving board and quickly said its not even that bad and got all mad; he's also like a fish when it comes to swimming. And I have noticed that when he plays his video games in his room he'll come in and get a chair from the kitchen to sit on because he doesnt like standing for long while he's playing. Am I being an overly worried big sister or are my concerns justified?

magistramarla
08-10-2011, 12:37 PM
Ritz,
No, I don't think that you are overly worried. We've all noticed that AI issues tend to run in families, and that each affected family member can have different AI issues.
You're getting a handle on yours, and that's a good example for your brother. He'll have to deal with his own issues in his own way. As he gets older and more mature, and if the issues start affecting his quality of life, he'll look into it.
You are a good big sis to worry about him, and he will know that you will be supportive if and when he needs your support.
Hugs,
Marla

tgal
08-10-2011, 01:09 PM
I agree with Marla. There is a fine line between worry and just paying attention. Pay attention so when/if the time comes that you think he may need to see a doctor you will have enough evidence to go to your parents about it.

Gizmo
08-10-2011, 04:15 PM
I personally think that actions speak louder than words. If you brother is changing his favorite activities because of pain, that is a pretty good indication that something is going on. It's wonderful that he has a big sis who understands AI disease and can help him if the time comes. In the meantime, keep those beautiful eyes open for clues to share with the doctor.

steve.b
08-11-2011, 05:01 AM
..... keep those beautiful eyes open for clues to share with the doctor.

ritz, that is good advice.
if talking about his problems, upsets him. just keep an eye on what is happenning.
if it gets bad enough, he will want to talk to you.

lovedbyHim
08-11-2011, 06:18 AM
Ritz, I have two brothers with vitalego, and one sister with RA. You are right to keep watching and if the pain and fatigue get bad enough, I believe he will start to accept the possibility.

ritzbit
08-11-2011, 07:27 AM
I dont want him to be sick. I feel like I see trouble where there is none sometimes, but normally I wouldnt say anything about it. I just dont want to find out sadly one day there is something wrong with him and we didnt do anything for it soon enough. He just turned 13 a few weeks ago. He doesnt need any problems. I was miserable at 13 and about 2 years later found out that I had lupus. I dont want him to be sick, I dont want him to be miserable, and I dont want to worry everyone about him if there isn't a need to.

lovedbyHim
08-11-2011, 07:49 AM
I think time will reveal the truth ritz. Just keeps your eyes and ears open. I have a daughter who has some signs. I said to her one day, " Honey, keep alert to the possibility that you may get an AI disease someday, as you have some red flags." She said, " Do you think I haven't thought of that? It scares the crap out of me sometimes!" I think in time your brother will see the signs and if they get bad enough, he will want the help.

kim,l
08-11-2011, 05:01 PM
dear ritz i know how you feel i noticed changes in my daughter of the last year but just had to watch and take notice to any symptoms that were similiar to mine and as it turns out i was right she has got lupus but your brother may not whe he is ready he will ask for help my daughter did good luck you are a good sister hugs kim l

ritzbit
09-28-2011, 08:27 AM
Soo new inquiry. Do AI diseases/lupus cause strange bruise looking spots on the eye lid. Because I feel like I've read about something like that but wasn't sure. My brother had this weird looking spot on his eye lid yesterday and said it didnt hurt and he hadn't hurt it and he doesnt know where it came from.

ritzbit
11-16-2011, 05:20 PM
Update: My brother has as I said had many odd ball seemingly unrelated problems especially this year. He refused to go to school today and my mom got really mad until he actually got up a few hours later and told her why I wouldn't go. His leg was in a lot of pain and he couldn't straighten it. So she took him to the doctor who said he has Osgood-Schlatter Disease and wanted to get a better look at his knee and sent him for xrays and they showed a tumor that they believe is benign on this leg bone. He goes to another doctor tomorrow to get it looked at more. I hope its nothing like the doctors are making it sound.

Gizmo
11-16-2011, 06:46 PM
Ritz, what a scary time for you and your family! As if you don't have enough to worry about. Remember when you are talking with your parents, that they are probably even more frightened than you are because they now have 2 kids with serious health problems. I hope you can all be kind to one another and talk about what is happening honestly. Is your brother going to the Childrens Hospital also? How are you today?

ritzbit
11-16-2011, 06:57 PM
He's going to an osteo up the street from our house because it was the one my mom could get him in the soonest to see. My mom agrees with me that he's had a lot of pains lately and I said even though the doc (just our pediatrician) said its this Osgood-Schlatter thing maybe you should mention that he was tested forever ago for JRA because the problem has been in his joints and they keep saying with each new one he has a problem with its just growing pains. Even this thing they say he has right now is apparently something that happens when bones are growing or something. Her response was she just doesnt know and she doesnt think JRA would cause a tumor. Im kind of hoping that they do some more xrays at least. If the spot on his leg isn't actually benign then my mom said it could be in his lungs too. I don't know I just hope they look into all of it really good because you don't mess around with anyones health especially a 13 year old boys. I asked her jokingly whats its like to have 2 cripples in the house (I jokingly call myself the cripple when I cant get around because of my legs) and she said its not fun. My brother apparently calapsed earlier when they came home because his legs went "jello". His one leg is so stiff and sore he can't even bend it. He's on the same pain meds as me right now. Its all just weird. I don't think its just this Osgood-Schlatter Disease because of all the other stuff. I knew something was going on and it took him not being able to use his leg to have anyone take real notice of it =(

My appointment went ok. Rheum looked got an xray of my lungs and apparently the ILD isn't getting worse, or at least bad enough to show up on just an xray. I don't know what the blood work looked like though.

steve.b
11-17-2011, 04:55 AM
what can i say ????????????????

hugs

jmail
11-17-2011, 09:05 AM
Hey ritzbit, when they go to check your brother, and do blood work, see if you can't have your mom mention to check his immunoglobulins (http://www.webmd.com/a-to-z-guides/immunoglobulins) to the doc. They help a person's body fight disease and infection. Your brother is probably too young to get a definitive answer, but if his immunoglobulins are low, all sorts of issues can creep in. My youngest brother has (had?) Osgood-Schlatter Disease, but "out-grew" it. He had to quit playing soccer for over a year. He "outgrew" me, too! He's like 6'7". I'm a little shortie around him...

Gizmo
11-18-2011, 03:11 PM
Ritz, will your mom and brother let you go along to his appointments and advocate for him. You could help by remembering incidents and symptoms that they may have forgotten. How about an appointment with the rheumotologist that you see - she at least knows the family history enough to take things seriously.

magistramarla
11-19-2011, 08:55 PM
Hi Ritz,
I'm just catching up on this. Your instincts were good, big sis - you realized that something wasn't quite right. I agree with Gizmo - try to go with him to appointments.
You are the experienced one, and you can be a good advocate for your brother.
Hugs to both of you,
Marla