side effects of BPI

[dunnfamily]

Hi everyone! I was just reading the post about the scoliosis and I was just feeling overwhelmed about something else that my 2year old son Tyler might have to deal with later in life. While I am stressing out, I was just wondering what exactly are all the possible side effects I need to be looking out for. Tyler has a RBPI and has little functional use of his arm and especially his hand. I am so caught up in worrying about how much that Tyler will struggle in life because of his arm and hand, I really don't know much about how the rest of his body will be affected. His therapist has never talked with me about the rest of his body, she's always focused on "righty" too.

[baby4us]

My daughter had secondary surgery for severely stretched nerves (all of them). We look at whole body issues very closely...her hip is tight on her affected side, causing her to internally rotate at the hip, drop her shoulder, and now she is complaining about pain behind the knee. Her OT thinks that she is referring to where her hamstring attaches to her knee (I think I'm getting this right, just told this today...so it's a bit fuzzy until I look at the anatomy book). Her hamstring is really tight, which her OT believes is from how she is carrying her hip. Her toes turn in on her affected foot.

Bottom line...BPI does affect posturing so you need to look at posturing and all that goes along with issues related to poor posturing.

I always think of it this way...drop one of your shoulders down for awhile and spend just 5 minutes that way...notice how you compensate in your neck, your trunk, your hips, your knees. Keep in mind how doing this permeates through your whole body. It's awkard and hard, and this is what happens to a lot of our kids. So stretching that whole body, and teaching good posture is important. Keep in mind, I'm no therapist, just a mom trying to imagine what my daughter is going through.

[PeggyUBPN]

This is taken from the UBPN sample Proclamation letter:
"
...persons affected by brachial plexus injuries can experience secondary issues, which may include: low tone (hypotonia), developmental delays, speech dysfunction, chronic ear infections on the affected side, possible hearing loss, nail bed dysfunction, weakness of the foot on the affected side, postural issues that may eventually lead to scoliosis and other secondary health issues. "

[CW1992]

Hi. Brittney is 12 yrs old with a left arm moderate injury. She does have good use of her fingers though, but her wrist seems weak. When she was born she also had left hip dysplasia - her left hip was loose and she had to wear a brace for a year. Her left ear drum burst when she was 11 months old, and she didn't show any real signs of discomfort - which was odd to me. She developed scoliosis at age 4, but it has actually gotten much better over the years. Rich, when you mentioned that the way your daughter sits is affecting her pelvis - that reminded me of Brittney who always sat in a 'wedge' or 'V' - which means she kind of sat on her rump/butt/rear (not sure what word to use here) with her knees bent but her feet went out to the side. Her therapist said that is really bad for her spine because it forces the child to arch instead of sitting up straight. She still does this and so does her little sister - but when I catch them I tell them to straighten their legs out in front of them - not behind them.

Brittney started getting "zaps" or shocking, electric feelings in her shoulder when she was about in second grade, but I do remember once when she was younger - like three maybe that it happened. The zaps do not last long and happen randomly, but usually when she has not used her arm as much as usual (like hasn't swam in a while).

Brittney does not have any pain unless she really over does it and then Motrin helps and she is back to herself.

She used to walk on her tip toes all over the place. Her therapist worked on that one - said it was a balance issue. She used to have a hard time walking a straight line but eventually she got better at it and she has pretty good balance now but still falls alot. She trips often - pops back up and says, "I'm OK!" but I worry that one of these times she won't pop back up as quick.

Her school performance has never been a problem luckily, and we have not needed anything special for her thru the school.

Today she seems so much stronger in all areas than she did when she was younger, and of course she can better explain things to me. It seems like there is more to add, and I will if I can think of anything.
Hope this helped,
Christy

[admin]

We have not experienced having additional problems as a result of our son's Erbs Palsy at birth.

No problems with sensation or anything like that. Yes he still has problems with bending his elbow as he cannot do so without winging out his arm but he has never mentioned any pain. His arm is not shorter and even though some muscles are definately more developed than others he still functions extrememly well. We have no reason to believe he has spinal problems or hip problems or problems other than flat feet that he inherited from me... He has good balence and leads a very normal life.

Bottom line is that you can worry yourself sick and you may be getting ahead of yourself. While it is helpful to be observant and keep up with regular exams, please do not drive yourself crazy.

Our son has had primary surgery and got a nerve by pass done at that time. He has done very well and has given us little cause to worry. He is for all appearences a normal healthy child. Some as not as lucky, I do get that .... but the point is that every child is different.

Any time you are concerned, consult your doctor and therapist and ask a lot of questions because often we worry to much about things that are not based on anything other than fear and we need our energy to focus on the reality of our particular situations and not extra stuff that will only serve to drain us. It is a matter of priorities.

[dunnfamily]

Thank you everyone for the feedback. I was a little shocked to hear about some of the different side effects. Especially the ear infections and the tip toe walking. Tyler constantly kept an ear infection when he was little and got ear tubes when he was one year old. We NEVER thought to associate that with his BPI. And noone told us otherwise. That is what is so scary to me because there is noone out there-not tyler's therapist or pediatrician that know a great deal about BPI that can give us a heads up on stuff like that. So I feel like if I don't keep asking you guys questions, I am going to be missing out on some important information about tyler's injury. Also, Tyler walks on his tip toe's alot and we thought well, that is weird and I tried to tell my husband that maybe it was because of his balance issues but he said no, tyler was just doing that. (My husband is still in denial alot) I know it doesn't do any good to worry all the time, but because we live in the country and are limited to doctors and therapists, I feel like I am Tyler's only advocate and source for information. And knowing this is so overwhelming sometimes. We go back to Dr. Grossman's in Miami for an evaluation for more surgeries so it will be great to be around experts in the field who know what they're talking about:)

[dmom]

I know what you mean, because I have felt the same way - How am I going to know what to look for if I don't ask other BPI parents? I'd better ask everything! I have gained so much wisdom from other parents here!

One other side effect mentioned to me ... intoeing. It can be related to a general weakness on the BPI side due to the injury.

Janet

[admin]

Oh Christy! I had to laugh out loud...Juliana does the same thing when she falls...and she still falls. One thing that helped the falling was horsebackriding. We were doing it every week, but the schedule changed and now we will probably have to wait until spring.

Juliana had ear infections when she was little, and they always started on the bpi side. Our ent said there was "no literature" supporting my theory that bpi effected the ear canal, but he thought it made sense. So, he held off on the tubes and I am glad he did.
We have lived thru the gamut of sensory issues. I have found that they come and go, and that they crop up in new and odd places. There are some things that just don't seem to go away: auditory defensiveness, sensitivity to light (she has mild horner's), and major food issues (gag away). She has very poor sensation on the left side and no periferal vision (Kath, do you have that too?).

As for the rest of the body, Juliana did not weight bear on her affected side, so she looked like she had a shortened left leg (we measured it all the time), she had major balance issues, she had all kinds of vestibular wackiness.

I stressed over how difficult her life would be, too. Except that it hasn't been as bad as I thought it would be. She just keeps on keepin' on... She has taught me so much. She compensates and compensating comes so naturally to her, that it doesn't even bother her that she does things "differently".

I can't tell you NOT to stress. I can tell you that it does seem to work out. We did lots of therapy-play time. We turned everything into therapy: window cleaning, stickers, ball pits, play-doh, you name it. Christy will tell you, Rich will tell you, Julia will tell you...there are bumps in the road, but I think the bumps are worse for us than they are for them.

Juliana can tell you that she wants "lefty" to turn palm up like "righty", but if you ask her if there is something "wrong" with lefty, she will say no. It just needs help doing things...

Juliana is in a regular Kindergarten (I wasn't sure that would be a possibility) and she is doing wonderfully.

Just keep loving him, telling him he is great, and he will keep surprizing you with what he can do.

claudia