United Brachial Plexus Network, Inc.

Louise,
How old was Elizabeth when this first happened? Tenaya's first time was in kindergarten. My wife tells me that Tenaya gets this dull pain (in her elbow) every couple of months also and that it usually accompanies a fever. She said that Tylenol will work once but the next time only ibuprophine works and then back to tylenol. It lasts for a couple of days and then goes away.

I have wondered if this has anything to do with an impairment of lymph circulation in the affected arm. There are a lot of lymph nodes in the brachial plexus area and neck. I think lymph fluid is circulated through the extremeties by muscle contraction and might be stagnant in areas with atrophied muscles.

I hope this is something that our girls grow out of!
Thanks for the information about your daughter, it helps to hear that this is a problem for others also but I'm sorry too. Perhaps we can touch bases about this in the future and compare.

Have you asked any doctor to explain it? I'll do some MEDLINE searches to see if it is documented anywhere.


Joshua

Josh, you might want to ask someone more wholistically oriented, they sometimes tend to understand from a different perspective as to how the seperate systems all affect and interact...?
Thinking of a chinese medicine practitioner, such as acupuncture ~ just a thought.

Joshua and Louise,

I would like to continue this discussion as it occurs and maybe we can all learn more from it and how to take care of it!

I've tried tylenol and some massage, but Emma doesn't like to take tylenol at all and certainly does not want me to touch her arm when it hurts.

Thanks for the feedback. It would be nice if they outgrow this, but I'm not sure that will be the case..we can always hope!

Peggy

Mary,

I would definitely seek other types of treatment if this becomes a "real" problem or if it escalated to a degree that limited Tenaya's activity. Right now it is a transient occurrence and goes away with or without intervention. When it occurs, Tenaya just wants her arm to be left alone.

I will keep your suggestion in mind and hope that it isn't ever required.
Joshua

I read your post several days ago and still cannot get it out of my mind. My son is 4 1/2 with a ROBPI. I can't even imagine how I would answer him. I'm glad you talked about taking your daughter to a therapist to learn about talking about her feelings. I have been wondering if I would have to take my son. I think that it wouldn't hurt. He never complains but kids keep alot of things inside. I think he will need to learn to express some of his feelings.

Thanks so much for sharing.

Hi Ruth,

Thanks for your comment! I felt that although there was no real problem with my daughter's ability to express herself YET, I could see that she would need to be able to express her feelings about her arm soon because other children were asking her about it and she didn't know what to tell them. I'm leaving it up to her to decide whether or not she wants to tell them anything at all but I wanted her to know that she had options. What she decides to tell them will depend upon how she feels about her arm and herself and I (luckily) caught her before she had any strong feelings one way or another. I knew that I was totally inadequate to take this on alone because there was no way I could be objective.

I also got lucky that I found someone she liked and could work with easily. I really expected to go through several therapists before finding such a person because there are a lot out there with an agenda on how things "should" be and have a hard time not interjecting their own program.

Joshua

Hi Joshua,

Thanks for sharing. I worry about how others are going to accept my son. How will they make him feel? How will he handle it? I think I am going to look into finding a therapist before he gets to far into school, probably next year. He doesn't say a lot about his arm. He knows it is different but right now he is in Early Education with other children that have disablilites and there is no peer pressure. I worry when in a few years he main streams into class with regular kids. He is always such a happy child.

Just thinking out loud. I am greatful I have such a wonderful child. I think all our children who have been through so much are just great kids.

Ruth