Concerned about kids

((((((((( Lurker )))))))))))) OH NO! I'm so sorry your precious babes are dealing with pain at such a young age. You are NOT wrong. You are mothering your babies!! Yes! keep searching for answers. If you are near an outstanding hospital like Rainbow Babies and Children's or Cleveland Clinic, Mayo, etc. they may have a greater interest in figuring things out. A pediatric rheumatologist might be a good start. Have the doctors checked blood work for ANA ?? There are some really young Lupus patients, unfortunately. There was a mom hear a few weeks back with a very young child who had been dx'd with lupus. If you can travel to get to a good facility, and get a diagnoses (whatever it is) then your local doctors will take it more seriously and treat it. They may be totally unaware of the possibility of lupus in an infant or a young child. Alternatively, they may be watching very closely and not wanting to alarm you. Sometimes they KNOW what it is and they wait until there is some treatment needed. I think they should TELL us everything and let US decide when to worry. There are strange rashes with lupus too. Also, there is another arthritis called Psoriatic Arthritis, but I don't know much about it or if children can be affected. So sorry you are dealing with all of this instead of just being able to enjoy your little ones. Blessings!

Lurker, See if you can get all the copies of all the blood work done so far. You should ask for a copy each time there is blood work. Keep a file just for the blood work and test results. Take this folder with you to each appointment. Eventually there may be a trend to some of the blood work that will help. But doctors are horible at sharing our records with each other. They say they will send it along and it often does not get sent. Just a thought. Blessings!

I don't have any answers but I just wanted to say that I am sorry your kids are going thru this. I can't imagine having to deal with so much pain at such a young age.

Hugs..

Oh my gosh Chaya!!! So frightening!! I'm so sorry for all of you who have children with these horrible problems. Blessings!

((((((((( Lurker )))))))))) I know this is the wrong time of year to suggest this. But we had a topic during the winter about pain keeping us awake. We were sharing some ideas and the hot topic was using electric blankets or grain bags. This is not a great idea if you live in an area that is hot this time of year. But if you don't . . . or if you have air conditioning, the heat can be very helpful. A grain bag is made by taking a man's tube sock and filling it 1/2 to 3/4 full with dry beans, whole grain feed corn or rice. I like the feed corn but its not easily available to some. Fold the top down about 1/2 inch and sew it. Sew a second time. Now you can pop it in the microwave. Try two minutes and then you will know if you might need to leave it in a bit longer. The grain bag is really soothing to the painful areas. You can make several of the bags . . . everyone who tries it will want a couple. They are so comforting. We call it "a hug in a bag". I'm sorry I don't have more help to share. I know some like to ly in their bathtub with epsom salts. This is supposed to help detox muscles. The "Lupus Resources" link at the end of my signature has a post in it with Tips for New Members and another one on how to prepare for a Dr. visit. Blessings!

Hi Lurker and welcome. I'm so sorry your children are going through this. There is nothing worse than seeing your children suffer and not know what to do. I have been going through a similar situation with my son for the past 3-4 years. We do have a wonderful pediatrician who has never given up, but we are having a hard time finding a pediatric rheumy anywhere near us. We saw one for a while that was a two hour trip, but he moved a while ago. My son's (now 10yrs old) problems started about 3 1/2 years ago when he got mono and he never seemed to get over it. His feet and ankles would hurt so bad he'd cry and he was severely fatigued. HIs pediatrician was the one who ran an ANA because of my health history and it came back positive along with a high ESR (a test that shows inflammation). He also regularly shows high levels of strep in his body. The pediatric rheumy we saw said he thought it was JRA and then said, maybe it's not and then said it's some kind of arthritis but wasn't sure what kind. After that pediatric rheumy left we tried another one that was 3 hours away, but she had a fellowship doctor working with her who was awful and didn't listen and didn't believe anything my husband and I said about our son. Now with the help of our pediatrician we are looking at maybe making a long drive to Chicago to see a highly recommended pediatric rheumy. My son now takes celebrex and is on long term antibiotics because he also had rheumatic fever. Things are more manageable with these meds, but he's still very stiff and deals with pain daily. An amazing book that I'd like to recommend is called "It's not Just Growing Pains" by Dr. Lehman. I learned SO much from reading the book. I actually e-mailed Dr. Lehman after reading the book and he's the one who recommended the pediatric rheumy in Chicago. I don't want to make my post too long, but feel free to e-mail me if you want to - it's available in my profile or you can click the envelope icon under my username.

Lurker said... Lynnwood- We have taken them to a pediatric rheumy that was about 2.5 hours from us. He said that he thinks it is just growing pains and he didn't see any need for us to come back. Lurker, one of the main things I got from the book I mentioned is that if a child is having pain upon waking or anytime during the day then it is NOT growing pains.

That's great! Nothing quite like a doctor really listening to make things feel much better!

Lurker,

I'm sorry that your children are suffering so much. My 17yr old daughter has been sick for the last 2 years and we were lucky enough to be referred to an immunologist who ran the 'right' tests. She has been diagnosed with Sjogren's but he is still hesitant to confirm SLE (but deep down I feel it is)

He also advised that we look at food intolerances, my husband has a food intolerance problem - if you are sensitive to this you can have reactions to normal things like fruit and vegies as well as the more common milk, wheat etc. I was wondering if you had looked into that. You said that your children's symptoms started at about 13 mths of age and that is usually when their diets are changing quite dramatically.

They have a lot of information on the subject and some helpful hints. We have changed many things in my families diet and it does help.

Most of all good luck, I know it is so worrying when your children are unwell.

Best wishes from Sydney, Australia.
Jo

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Post edited to remove link

Post Edited By Moderator (AlwaysRosie) : 7/18/2008 8:48:50 PM (GMT-6)

Sorry Alwaysrosie, I must admit I hadn't read all the rules and didn't realise I I couldn't post the link. I'll ask permission today as the information may be of help.
Jo

Hi Lurker, The sun doesn't bother all of us. But it does bother most of us. Those of us with sun rashes actually get an early warning. When I see my malar rash raging, I know what's coming . . . an increase in other symptoms. For me, the rash comes first and then a flare. If hubby sees the extra rosy cheeks, he lets me know and I take it easy. We've avoided a lot of trouble that way. For me . . . the affects of the sun are cumulative. I have to keep track of my sun exposure over any given week. We each seem to find our own limits. I actually have to watch for reflective sun too. Even if I use an umbrella or sit in the shade, I have to avoid reflection from water, sand, etc. Some can't even tolerate fluorescent lighting. Sometimes, we have to look backward. If she ends up in pain, look back and try to see what might have triggered the symptoms. Sun, heat, over doing, not enough rest, stress. There isn't always a trigger. Sometimes we just get sick. I hope she fools us all and gets better!! Blessings!