United Brachial Plexus Network, Inc.

Any of you who have kids with mild injuries, I was wondering what types of residual problems are you still seeing? My 2 y/o dd is probably about 95% recovered and I feel I have to fight to continue therapy (because she's functional) - I feel like if we can shoot for 100%, why not? I don't want her to say to me at some point, why didn't you do everything you could to help my arm to be normal? I am a therapist and I think she's a kid that anyone else would have thought was fully recovered, but because I know what I'm looking for, I still see issues (not to say there are not some VERY astute parents on this site, just that I feel everyone (family, therapists) thinks I'm being overprotective and that she's doing fine in their eyes).

Anyway, enough venting! What I'm still seeing is a hiking of her whole right side - the shouder is elevated, the scapula is elevated and wings mildly, there is tightness around her scapula and it pops during ROM. She is lordotic, which could be from previous compensation for lack of shoulder flexion, although she has good ROM now. She intoes, which I believe can be due to some compensation patterns as well. She also seems to be having very mild dominance issues - not always natural to use her right hand; and when she holds a spoon, her thumb is often tucked under her fingers.

So I understand that many kids have much worse issues, and I am thankful that she is doing as well as she is (I guess that's the feeling I'm getting from some of the therapists who have worked with her - that they have seen so many worse kids - and I have too - but like I said if she still has potential to make gains, why not give her as much as we can?) She gets OT 1 time/week, although he keeps talking about decreasing (and I keep bringing up the issues) and PT monitors her once every couple of months, which is more of a re-evaluation than really working with her. We have an upcoming appt w/ PT and I thought I would see if she would increase for a time period to work on decreasing the tightness, because I feel the OT is focusing more on fine motor and strengthening, which she needs, but I'm going to talk to him too about doing more stretching. We also have a picnic coming up w/ Dr. Nath, and I wanted to ask him is this what we are stuck w/ (besides potential progress w/ strengthening), has she made all the nerve recovery she is going to do?

So anyway, just wanted your thoughts on this and some input on what you guys are seeing w/ your mild kiddos. Thanx!

Anna,
This is a tough issues which I'm learning to deal with right now.

Melanie is almost 4.5 and recovered by nine weeks. She never received formal therapy,we used to do roms at diaper changes. We still stretch her once a day because we caught a problem just in time and were able to address it.

Matthew is almost 3. He has a total plexus injury from C4-T1, he's had his third surgery already and we just got the news that he's going to be released. That doesn't mean that we stop working with him at home - it means we increase lifestyle therapy and decrease formal therapy. Unfortunately as parents of this injury we're left with the responsibility of therapy when it becomes maintenance work for the medical therapists. I'm looking at it this way - Matthew gets much more out of lifestyle therapy and a to a growing little boy that means more to him because he gets to be a kid instead of being told to do this in that in a traditional therapy setting. Yes we'll decrease therapy but we'll have an increase in the fun stuff to keep him active - swimming lessons, tumbling, sports, etc.

Cindy

Anna,

I think many of us struggle with these issues at times. I think it is normal and healthy for us to want the best recovery possible for our children. Like the previous poster I too feel there is MUCH that can be done at home. Actually I am integrating therapy throughout the day. Working on getting the thumb out to put on mittens, cutting with scissors, encouraging use of the arm without compensation by holding certain parts of the arm/shoulder down, etc. or reaching for things intentionally placed up high, etc. I think sometimes we can even get more done at home than in an individual session so don't underestimate your importance and ability to become an active therapist for your child DESPITE others opinions. If you want to continue with a professional, which I too am chosing to do, than FIGHT for it all that you can! Follow your heart. Mama knows best! Get Dr. Nath to write you a letter, or your pediatrician, or provide info. on the specific limitations and why these need to be addressed.

If you don't mind sharing, what do you mean when you say 95% recovery? 95% range of motion or does she have full and complete range, touching back of neck, getting hand behind to wipe self, full supination? Is the thumb, winging, and hiking the only issues and range is complete?

You mentioned the hiking of the shoulder and that seems like it should be important to continue therapy to try to minimize that or distinguish that. My child is no longer doing that and I credit therapy and surgery. Compensation isn't ideal, do the therapists think so??? Can't they work on helping her use the proper muscles in the proper way, before they think they have done all they can?

Well, good luck to you and keep us posted.

They told me Richard now 12 would have no residual effects except perhaps some deltoid weakness and a little scapular winging - today at 12 years the shoulder I guess became dislocated somewhere along the way and external rotation is limited to straight out in front and supination is barely nuetral- I would in retrospect have kept doing therapy at home and have him evaluated at regular intervals by someone who knows what to look for and understands the condition more thouroughly so they could warn me and advise me as time progressed about changes that were occurring ever so gradually.

Yes, I didn't mean to say that I'm not doing things w/ her at home, and I started to say that, but I guess got caught up w/ whatever else I was saying! Of course I am working w/ her at home, but just want to continue w/ a second opinion to what I know to do.

She has good range, but I still note tightness passively. It's more those little funky issues I see and I guess I worry that she will have pain later from tightness or compensting w/ overuse of stronger muscles. Or that she will have difficulties in school w/ handwriting and fine motor skills.

Thanx

Since you are a therapist you may be able to post at the forum set-up for therapist only at Caleb's companions page at:

http://www.bpitherapy.anderson-clan.org/index.jsp

Not to discount any info from parents since it is very valuable information and sometimes the best!

Hi my daughter will be 4 soon and has very similar recovery. She is still in pool therapy 1x a week and we are trying taping for the mild scapula winging. She is very fuctional has full range reaches all the way up can touch back of neck and middle of back - bra area too. Only issues we still battle are a small amount of internal rotation, winging and slight drooping of shoulder at times. Mostly its the compensation moves- she still does elbow up to drink more from habit she can drink elbows down and has full supination. She can wheel barrel walk and crab walk so we do this lots for weight bearing. I believe we will alway need therapy at least once a month and to be yearly checked by our specialist we use Dr. Waters. We also do dance and swimming year round. I am glad to hear updates on mild injuries as I feel Kaitlyn is rare she will always have mild issues. I am VERY grateful for all she has and no surgeries but I do hate chasing this monkey it seems it is always there to deal with. I have accepted 100% will probably never come for us. I rarely post any more but do read. Nice to meet you all. Carole