New baby diagnosed

[oscarsdriver]

Happy Easter Everyone!

I am a proud new Papa (dad) to a beautiful little baby boy, Elijah James. In the first week we noticed that he rarely if ever moved his arm and he held his hand curled under. My families pediatrician scheduled physical therapy and we have been twice, we have noticed improvement in his hand ( which he can now hold palm up and usually cares palm down, but not curled under) and his ability to move his arm in general. However, he is still having trouble moving at the elbow and moving his arm when he is awake. He can move his arm (even above his head sometimes) when he is asleep, or just waking up. In our last visit with our pediatrician, she suggested that we see a specialist since Elijah is a month old now. I must admit that it has taken me until now to research Erb's Palsey, which I attribute to my fear of knowing the truth and the extreme sadness which overtakes me when I think of my beautiful boy. My question is to parents like myself who are going through this, what should I expect from this appointment? Is there anything that I can do besides physical therapy? I love my little guy with all my heart and as most fathers feel... just want the best for my boy. After reading I have hope that his little nerves aren't completely torn, but hate to get my hopes up. Is their any other resources that you know of that I might read or find to do what is best for him? When I talk to the doctors I can't help but feel that I can do something more than "wait and see" and the advise of "these things usually work themselves out." is becoming cumbersome. If you have any advise I gladly welcome it! Thank you, and I will keep all of those going through this ordeal in my prayers along with my son.
-Jimmy

[KimW]

First off, congratulations on the birth of your son!

Secondly, I’m sad that you have joined the ranks of parents with an injured child — unfortunately, there are many of us.

I have a wonderful 11-year-old daughter with a permanent right brachial plexus injury. Most days it doesn’t even enter my mind that she is injured, although I’m sure that is hard for you to fathom right now. She has her challenges but kids are truly amazing beings with the ability to adapt to all of life’s challenges.

All these injuries are very different. Many children with the same nerves affected will have varying degrees of use. Some children need surgical intervention and many do not. The key is to see a bpi specialist early (you can find doctors through our medical directory via the resources link above) and to continue to do range of motion/physical therapy every day.

My daughter did have surgery on her arm but as you will find, there are varying opinions on which children should and shouldn't have surgery and at what point in their development they should have it. The key is to find a bpi specialist you feel comfortable with and make the best decisions for your child.

Keep your head up, seek as many medical opinions as possible and check back here often for support and resources!

Best wishes and congrats again! Feel free to email me at any time with questions! Please keep us informed on Elijah's progress!

[marleneross]

Jimmy-

Congratulations on the birth of your son.

I would like to say that it will get easier, my daughter is now 4 months old with ROBPI and everyday seems to get easier.

In the beginning every time I would look at her I would see here limp arm and start crying. Now every time I look at her I see this amazing child that is just growing so fast, don't let this wonderful time in your life pass you by, don't focus just on his arm.

It sounds like your son is already off to a great recovery. My daughter can currently get her arm to 90 degree angle and has just started to move her elbow. That is great news that he is able to go up above his head, I would not think it makes a difference if he is awake or asleep, either the nerve is working or not. Please let us know how your visit with the specialist goes.

Please feel free to e-mail me offline if you would like to discuss anything.

Marlene

[karan71]

Hi There..First and foremost so sorry to hear of the little guy. Next, I'm not sure where you live but within the "UBPN Family" WE have alot of great Doctors..let me know where you are from and I can guide you in the right direction or at least try. I know exactly how you are feeling right now. Our son who is now almost 10 years old..was born with a Left bpi and I remember like it was yesterday those feelings of Ugh..will he ever be able to crawl, feed himself, dress himself, swing a bat, play football etc..Our son Avery had a severe bpi we have had four surgeries since he was 4 1/2 months old up til 2 months ago when he had a elbow reconstruction. I am VERY PROUD to say that this kid amazes us everyday with what he does. He pitched a "no hitter" game last baseball season in the majors..he also ended his year with six yes six home runs!! He is Captain of the defense in pop warner football..he hits like a pro. and someday I am convinced he will be talked about on ESPN ( lol). All of this has come from hard work and dedication on us as his parents and him too. I'm letting you know all of this because even though things seem bleek now it won't be a few years to come. Keep the baby in therapy, thats important. Be your sons strong advocate. If you would like to contact me directly please feel free. Karan.

[oscarsdriver]

Thank you so much... all of you for your support, best wishes, advice, and prayers. It is so nice to discuss our situation with people who know and care. As a former colligate athlete I became overwhelmed with the knowledge that I may never be able to play catch with my son... then I thought.... how vain of me. What I am thankful for is the most beautiful little boy I have ever laid eyes on ( and yes I'm prejudice, just like every parent should be). It encourages me to no end your stories of your children overcoming and even excelling in everything those beautiful childhood years entail. I live in Summerdale, Alabama. A small rural town about 15 minutes north of the Gulf of Mexico. I work for a organization that cares for abused, neglected, and abandoned children from throughout our state. In dealing with children from unfortunate circumstances there isn't a whole lot I haven't seen, however when Elijah was diagnosed I felt completely clueless. We are scheduled for a trip to UAB in Birmingham to see Dr. Mayberry on April 22. If you have heard anything about this program or the doctors their please let mw know, or if you have had success somewhere else or could suggest someone in our region that would be wonderful. Thank you again for all of your encouragement. Never think that I tire of hearing them, I am elated and it offers me and my family such wonderful hope. I will certainly post what the doctors say, and will proudly post progress. With that said, as I held him last night as he began to wake, he moved his right arm across his body and touched his face on his right side. I almost weep thinking about it. I think gravity then took over a bit and he got his arm above his head.... but at least the range of motion is there. Have a wonderful day and I hope to hear from you again soon. Best Wishes and May God Bless you and yours!

[katep]

Hi Jimmy,

I'm glad you found this very supportive community, but sorry you needed to.

It is definitely a good sign that your son is lifting his arm up when he is waking up, at one month old. That is a good indicator that the injury is at most moderate if you are seeing shoulder movement (even just upon awakening) at that age. This is typically when you first see movement. You are seeing instinctual, reflexive movement, which is the same kind of movement a newborn does (remember the Moro reflex when a child startles and his/her arms move? This is the same kind of thing but only starting when the child is older because his/her arm is recovering). The movement that you see when he is first waking up should start to happen when he is awake and he should gradually get more and more control over his movement.

For comparison, we saw the same recovery pattern with my son, but stretched out quite a bit more. Joshua has a moderate injury, and has needed one surgery for his shoulder. His movement started exactly as you describe - when first waking up. I used to go up early and stand in the doorway to his room, hoping to see something as he woke up. At first his arm only lifted slightly off the bed when first waking. He was 3.5 months old when it first started. Over the next month it gradually lifted further and further off the bed, and his movement started kicking in while he was awake, as well. The late start to his shoulder movement indicated a permanent injury of some degree. The longer it takes, the more damage had to be healed before the nerves reconnected. We've been very lucky that he has regained almost all his movement. I expect that your son's prognosis should be better due to him moving his arm earlier.

I pray that you see continuing improvement before your doctor's appointment.

Kate

[oscarsdriver]

I have a little update. Elijah (my son) went to the therapist the other day and my wife asked for all of his records so we can take them to Birmingham with us when we go see the specialist. THe therapist said that Elijah had improved his movement across his body and the out to the side and up movement ( I don't know the proper terms for these movements), and she said she sees vast improvement in strength in his shoulder!

[oscarsdriver]

I wanted to let everyone know how Elijah's appointment went in Birmingham with his specialist. When we saw the doctor she said that she usually sees baby's when they are about 3-4 months old so she asked if we could come back in 6 weeks so we are going back in 6 weeks. She said that he seems to be moving his arm pretty well but when he comes back she hopes to see improved movement in bending at the elbow, if she doesn't she is going to schedule a meeting with a neurosurgeon. So that's where we are right now. She did give us one more exercise to do, so that was good. And personally we see improved movement he is stretching his arm and does it more frequently than just when he wakes up so that is encouraging! Thank you guys for your support and I will keep you informed of any other updates!d