United Brachial Plexus Network, Inc.

I just wanted to say thank you francine,Gwen, Evan,Debbie,Bridget,and others that replied to my message. Thank you for he information and kind words you have provided me. I'm the guy with the new born who posted my message in the OBPI board. Well thanks to your help I'm at the right board now...ha..ha..ha...
Anyway, my son is now 15 dys old. It seems he has Erb's palsy, based on the definition, although I have yet to get him to the neurosurgen yet. This is comming soon....the wheels are finally in motion. Just got my pediatrician to refer me to the Hospital for Sick Kids. They have a well recognized Brachial Plexus Clinic. I guess most of you know that. Some of you may know that is in Toronto, Ontario. And yes, that means I'm a Canadian.....By the way, for those of you in the States, I don't live in an igloo...ha.ha.ha...that's a joke...Must keep my sense of humor...
Like most of you, I also knew nothing of this condition and like most of you I have gone,and am still going, through a wide range of emotion from anger to self pity. Boy these holidays suck.....
Anyway, the positive is that it seems that my son has gained some more purposeful movement with his right arm. In the beginning he could barely move it to his arm to his belly button. Today, he actually move it to his chin. I guess, that's a good thing. Although, I think he can shrug his shoulder, he dosen't really move the upper arm. I find that sometimes I deliberate keep his crying continuing because it seems that as he struggles he tries to move his arm with the other. This may not be the proper thing to do but I have not been given any direction one way or the other to immobilize or keep the arm moving. I had been doing some ROM exercises with him at home and this is what led me to suspect that the injury may be causing him some pain.
I'm not sure when the clinic will call to schedule my son for his assessment so I'm left on my own.
Like I stated before, this injury may be painful for him but at the same time the movement while he cries may be helping him. I'm going back and forth on this issue. I know most of you say every child and injury is different so maybe I'm right.....I'm not sure....HHEELLPP...any comments would be greatly appreciated. Thank you all again for being there.

Hey Rich
At least your trying to find the right information and soon you will. This is the right site to get all the help you need.

If the baby is using one hand to move the other that is called compensation. I use one hand to move the other many times a day.

I wish you good luck... I am one of the OBPI's who said we have pain... with obpi..... I hope the baby is feeling better and gaining more each day

Kath

Hi,

If your son is just 15 days it sounds like you are in for some good news. My son is 4 1/2 months and just started bringing his hand up to his chest a few weeks ago, then he uses his right hand to bring it to his mouth for a good chewing. My therapist said it was a good sign because it showed that he was aware of the other arm and some kids with any kind of paralysis can be unaware of the injured arm.

I remember wondering whether or not Carter was in pain when doing the ROM exercises. But then it seemed more like there were times when he just wasn't in the mood to be messed with. Sometimes he would just lay there and let me do whatever and other times he would fuss and cry. Hard to know for sure but I chose to do his ROM exercises when he was more cooperative.

Its hard at this point when you haven't seen the Neuro. I went nuts. Our Neuro couldn't get us in for almost 8 weeks after Carter was born, but promised to call if they had a cancellation. The first time they called with a cancellation we just couldn't get there, too short of a notice. I was devastated, cried and cried. We were able to make it the next time they had a cancellation so ended up getting in to see him a few weeks earlier than originally scheduled . And after all that he said that we needed to wait and see, start physical therapy and come back when he is 3 1/2 months. It was a bit of a let down to be honest.

glad you found this board. I have only posted a couple times but the out pouring of advice and support is wonderful. I have learned a lot. Hang in there.

Pam

Hi Rich,
It actually sounds to me like your ds is doing awesome to me. My ds did not have significant movement until probably 4 months old. I think especially if you have bending in the elbow sounds good.
You did not mention if your ds is being treated by an OT or PT yet. Do they have him in an imobilizer? I remember as a newborn my ds was in an imobilizer, but we were doing ROM a couple times a day when we had if off for changing and baths.
Sounds like your taking the right steps in pushing to get him in with a specialist early. I know most peds want to take a wait and see approach and it's the parents whpo have to really get things moving along.
I know we can certainly all understand your negative emotions. I'm know we all go there from time to time. I hope for you that it gets easier for you. Dealing with the day to day is difficult enough without having negativity dragging us down. I'm also a firm believer in positivity bringing positive results. It certainly does our children no benifit for us to be drug under by their injury. Of course there are always those moments and days of anger and saddness. And when they come know that we certainly understand and can relate.
Pam C

Rich- I am a bodywork therapist - so a lot of the work I do is "emotional processing". We try to get people to open up their bodies and allow their emotions to surface and come out - thus releasing key points of blockage in their physical bodies. When someone starts an emotional release in my office, I allow for it completely - as long as they are not hurting themselves or me, it's quite wonderful because I know it will bring them some freedom when it's over and they will be able to breathe better. I support them - at least through few words here and there - sometimes I touch them lightly and momentarily to support them to keep on going.

I think that if your son is showing emotion and anger and is crying and moving and you are there to support him and you tell him so - I think it can be a really positive thing. BUT maybe his pain is such that you should be giving him a little tylenol too? or trying some other means of pain control- like the acupuncture you were talking about? There's a fine line between emotional processing and release and just plain old being in physical pain and with a baby it's hard to tell the difference. Being in pain all the time isn't a good thing either as it really overworks the adrenals.

...and with all that said - since you are your son's father - you will know by your own gut feeling when is the right time and when is the wrong time. Don't let the concept of increased movement overrun your son's emotional needs. He has to trust at this very early age that you are not hanging him out to dry (making him be alone in his pain) and that you will be there for him.

i hope this makes some sort of sense,
Happy New Year and give your sweet little baby a kiss from me and Maia,
francine

welcome, Im in S Florida but converse regularly with several kanooks(? spelling) not on the board here who actually go to sick kids- email me if you want their address-
15 days old? Of course he wont be moving...Id watch him cry a little longer too my friend, just to see that shoulder tighten
but not much longer because he is probably so precious and absolutely beautiful and as you dont need me to tell you- is so loveable Im sure you just pick him up and love him-
the best advice I ever received from this board when my baby was an infant was "he is more than an arm"
I hope mama is doing well and bless the new and wonderful path you have found yourself on -
No problems...just challenges
your new baby will have a blessed and wonderful life.
By the way, please ask your doc about chiropractic, I am a strong believer that when regular adjustments are done from the very beginning it helps prevent many of the secondary imbalances and complications and may even create a position in the infabnts body wherein the nerves' actual growth could be enhanced...not to mention that it doesnt hurt and is not invasive.I have used it with my son since he was a baby -I also do the ROMs water therapy and lots of lifestyle therapy with my son...altho he is beginning to do most on his own- he will be 3 in January
Season's Greetings and CONGRADULATIONS

Hello Rich, I replied on the other board you were at but my reply has yet to be allowed to reach you. I will email you privately as I just found your email. There is no need for you to go anywhere else except Toronto Sick Kids. They are exceptional and will give you all the help you need. Talk to you soon