Long time, no visit! Question!!!

[Bonnie]

Sorry folks, I haven't been here for a long time. My daughter is now 18 months old and has an ROBPI. We have been to a specialist 4 times but she has had no surgery to date.

My specific concern/question is this:
My daughter used to crawl. She was able to weight bare on her right arm (though with a lot of effort and energy probably). She has never been strong enough to catch herself from a fall.

She was crawling today and kept collapsing.

Does this happen to any other children and have you discovered that this improves as they get older, that they have to keep excersising forever or are there surgeries to improve this problem?

I wonder if her therapy really helps in the long term or if it just "band-aids" the situation while she is attending. She hasn't had her regular massages and attention for about 3 weeks now....

Thanks for any support/advise you can offer. I'm needing some understanding ears right now!

Bonnie
Mom to Avery

[admin]

Hi sure it gets better as soon as they can walk but give a soft doll in her arm then as she learns to walk she can fall into the toy its also arm theopy by grasping and holding on to the doll get her a ball to squeze and theopy is very important the trick is to make it fun so they dont think it is theory. I was born with ERbs in my left arm and I am 51. so I can tell you some but there will be others can help about surgrey just remember there is help here and not you are not alone! TOm

[Francine_Litz]

Bonnie - it could be lack of strength, it could be difference in length, it could be biceps contracture.... it's something to ask your specialist about and OT/PT.

You may want to try a pedi-wrap or an air splint to give her arm more support so that she CAN crawl... crawling is SO important and so beneficial for their shoulders. You just put it on to crawl and then take it off. It holds the arm straight and supports it.

Look at the splint page to see a cutiepie wearing a purple pedi-wrap. http://www.injurednewborn.com/maia/splints.html

good luck,
francine

[Francine_Litz]

(just remembered something else...) another reason for collapse when crawling is a radial head dislocation.... (this happened to Maia) in which case crawling might be contraindicated OR it may be suggested that crawling only be done with support...

I think it's a good time to check with your bpi specialist...

good luck,
francine

[PeggyF]

Bonnie,

in re: to your remark about therapy...yes, it helps. It helps to keep the muscles and nerves from atrophying so badly, if nothing else. It can also help strengthen and keep range of motion going. I'm a firm believer that therapy goes a long way...even if it seems like you are not getting anywhere.

One other thing to think about,too, is maybe your daughter is getting some sensation back (tingling or something) and it just doesn't feel right.
It is definitely something you want to talk with your doctors/therapists with.

Hang in there!
Peggy

[Bonnie]

Everyone keeps telling me to check with my therapists, specialists, doctor.

Sadly, that isn't really possible for me. I know more already than any "professional" in town here (I'm stuck in mid-Saskatchewan).

I have found a private PT (one of only 2 who work with Children) and she has come out once. She seems very eager to research and learn but hasn't had any experience with Erb's Palsy.

Our BPI "specialist" is in Toronto (a 4 hour plane ride!).

Thanks for all your input and ideas. They are helpful.

Thank you,
Bonnie

[Angela Butterfly]

Hi Bonnie,
I have posted several times lately, having found this sight 2 weeks ago. If you have been reading you know I have a 19 year old LOBPI daughter. She has made what could be deemed miraculous recovery, and is fully functional, in all areas. Is her left side just like her right. No. But she can get her own hair up in a pony tail with both hands. She carried her own lunch tray at school. She can not do pushups, other than against the wall. She is a very talented artist, and is on her way to becoming an Art Teacher.

I do believe therapy is very important. It sounds like you are in therapy burn out. And thats o.k. Everyone needs a vacation from whatever they do regularly. So it sounds like you have had 3 weeks off, and it is soon time to get back at it.

I too felt very isolated, although I must admit you have farther to go than I did. For me the closest trained O.T's and Doctors were 100 miles away, in an area so densely populated to what I was used to. I lived 5 miles from the closest very small town surrounded by fields of grain. Chicago, and it's traffic scared me to death. When Jill was 6 weeks old we were put on a shuttle bus between Childrens Memorial Hospital and Northwestern Hospital, so she could have her first Therapy appointment at one hospital, and then her first EMG at the other. I had no idea where I was at and was clenching my 6 week old in my arms. I spoke out loud and was in a panic of getting lost in this very overwhelming large city. The very nice people (mostly medical professionals) sitting around me were so kind and talked to me to calm me down. They assured me I would not get lost. Well I got through it, and I kept going as frightening as it was. My hands & wrists ached and ached the next day, because I had so tightly clenched the steering wheel, for the long drive there and back. I was so afraid and overwhelmed, like it sounds like you are too. Please don't give up.

My Jill was completely limp and flail, with no feeling. I was told her nerves were avulsed, by more than one doctor. But my heart said "don't give up on her, like they did for people like my older brother, cause they were wrong too".

My Daughter's injury involved her entire left torso, shoulder, arm, hand, & fingers. I used to pinch her to test if she could feel. One day, forever forward, she cried, and I celebrated. I have read on these boards where many have reminded that weight bearing is very important. Jill needed O.T. for so many area's I found it overwhelming. It was most painful for me to try and do weight bearing on an arm that was more like a cooked piece of spaghetti. It boggled my mind. I felt like I did not have enough hands to support her in all the areas needed to allow her to weight bear. It hurt my heart to do her weight bearing. So I shyed away from doing the weight bearing one. Well, let me tell you Weight Bearing Is Important, like everyone is saying here. I, for Jill learned the hard way. It is also important to hold the scapula down in place, under the arm, so it does not wing out when you do ROM for your baby with her arm up. I didn't realize that then either.

Please don't stop with the therapy, long term. Take the short break, both you and she need, and get back up on that horse.

If you pray. Please pray for guidance and wisdom, to know what to do, then stop be quiet, rest, relax, and listen (So often, I got my answers while in the shower -- cleansing). Then pray for the strength to carry it out. Often times every morning, I would stop and pray to just give me the strength to get through this day, and believe me I was exhausted. When I look back, I am absolutely amazed at what I had accompolished, for the good of my family. And did I fall, cry, pull the covers up, shake with fear. You bet ya.

I had no one to help me. I had no sisters, and no mother. I knew no one with this injury. All I had was an older, learning disabled brother, that the schools had turned away, to guide me to never give up. 15 years ago his I.Q test said he was Average Intelligence, low end. He works in a factory, lives on his own, and is fully supporting himself.

I also learned, to take a picture of all the therapy I had to learn, all at once. The O.T. would pose with Jill, in position, and I would snap my polaroid camera, and immediately make any notes on the bottom of the picture. I couldn't remember it all in a rushed infrequent training session. Then as Jill got older, (and I was busy working in my Commercial Construction Office, or traveling to a job site, etc,) I put together a picture book of therapy for her to do, while I was working. I directed her to do one of her excercises and snapped a picture. Below I wrote any additional reminders.

I hope none of this sounds too harsh. It is not meant too. I have not forgotten how overwhelming it can all be. Therapy worked for Jill. She never did have any surgery. I must say, with the changes in treatment, I have been reading on this web sight, I wonder if she had been born now, what they would have said. But believe me she is so abel, there is little she can't do.

[Kathleen]

Angela

I have tears in my eyes... I heard my mother's voice in your words. She had to travel on subways and bus to take me into the city for appointments for a very long time. We lived by bus and subway at least two hours at that time due to changing trans and buses. She often talked about her trip but I learned the emotions connected with those trips from you... I use to be so annoyed because she watched over me so carefully and pushed me to move so hard... I know it is because of her that I gain any function and so much more than any doctor predicted... I am a parent and cannot even begin to understand how hard this is on parents...

Thanks for being so open and sharing it help so many younger mom and OBPI/adults like me to again appreciate all the hard work. My Mom did all of my therapy with the help of one big brother for weight bearing and the words you wrote brought a visual to me... thanks now I need a tissue.
Kath