New and need help

[mushix]

First of all I would like to thank the organizers of this board. I have just found it and although I wish none of us had to be here, this resource is very helpful and I am glad we have it. I am just starting to accept the fact my precious daughter will have some permanent injury even with surgical intervention and its hard. I was hoping to get a glimpse into the future of what this means from you folks who are farther down the road. Heres my story. My daughter is now almost 4 months old and is ROBPI. She was 9 lbs at birth but the delivery was not particular traumatic until the very end when her shoulder got stuck for about 20 secs. She could move fingers at birth but not her arm. Around 6 weeks she had shoulder abduction(spelling?) and around 12 weeks she could bend her elbow. She is now moving her arms regularly but no where near the level of her other arm. I have taken her to a specialist who thinks she does not need a primary (although it not ruled out completely yet) and will likely need a secondary muscle surgery at 2 years of age. He said that the muscle imbalances will get progressively worse.

My questions for people in similar situations are.
Did your child have difficultly in crawling?
Did they become left handed ? Did there arms movements get better then worse because of the muscle imbalances. Did anyone not need surgery after all. What types of limitations do they have around 2 years of age.

I realize that my childs injury is not as severe as many of the people on the board. But it is hard to manage all the therapy the appointments and making sure we are making the right decisions. My faith is the medical establishment is very weak given that three OB's told me I did not need a c-section.

Again I appreciate all the help.

[mlynn]

my son is robpi & is 2. no surgery as of yet. But, botox has been suggested. we are in the process of going to 2nd & third opinions. as of crawling he did but just not like normal kids. hhe walked very late which is very good for the arm. we still weight bare it is vital. we go to lots of thearpy home/ & at a facility. I was so worried too but, I turned that into an active avocate for my child this board has saved my mental sannity. as 4 the medical doctors we need them & I felt the same way until I met our bpi doctors.

[admin]

So sorry you had to find us. What is your email....some of us prefer to email off the boards.

[GAmom]

Hi! My son is now 2 1/2 almost 3. We just recently had surgery this past August but it was bone surgery. He as well had muscle imbalances and we did bone surgery as a result of the imbalances. Brayden is ROBPI as well. He now uses both hands to write/color but it is much better with the left hand. Brayden as a baby did everything all of a sudden. For example, we would work on it in therapy, at home, and daycare for weeks and somethimes months. Then all of a sudden he would just do what we had been working on. He never just gradually worked on doing something. You would get discouraged and then next thing you know he was doing it. Crawling was a little different he started out comando crawling and then built up to regular crawling with the help of therapy. Brayden tends to have like plateau stages where nothing new is gained. He always has good and bad days. Even after surgery he still has some limitations but we are still a work in progress. He has trouble pull up his pants on the right side and it takes him awhile to get that right arm in his shit. But other thatn that he is a happy healthy boy. All Boy. I agree that you have to be a strong advocate for your child. We saw several DR's at several big hospitals that said we should count our blessings that his recovery was as far as it was and there was nothing they could do. Just to continue therapy. Then after 2 yrs and 2month we found one that said yes there is something we can do. I t was a had decision but I prayed long and hard on the idea of surgery. If you ever have any question feel free to email me. Hope my rambling helped some.

Ashley, mom to Brayden ROBPI 2 1/2 GA

[GAmom]

I was typing to fast I think I might have typed an ugly word. SO SORRY. The **** are suppose to be shirt not an ugly word. OOPS!!

Ashley, mom to Brayden 2 1/2 ROBPI GA

[bladow03]

I truly understand your frustrations. My daughter is almost 11 months and also is ROBPI. She has not needed the primary surgery as she keeps progressing. At birth she only had the finger and wrist movement and at about 4 mos started moving the arm. She started doing the army crawl at about 9 months (it is the cutest thing). She now weight bears on that arm great, is starting to do the regular baby crawl and has begun to take her first steps!! We do not have any formal therapy, we do "play" therapy and also have an e-stim unit but we can't use it much because she likes to play with the cords. I too have so many questions as to what the future holds for my little princess. But I also take comfort in the accomplishments she has made and know that no matter what she will be just fine. I wish you all the best luck and feel free to e-mail me, it always feels better talking to someone who understands. ~ Tara

[admin]

Greetings.
I have a 7 year old son, ZekeMax who sounds like he was a tad behind your son's wonderful progression.
Let me just tell you that we declined the surgery that is commonly suggested by the popular surgeons, (that is what they do by the way, can we really suggest them to not suggest surgery?) and I have never stopped being thankful that I declined.
Feel free to email me for more info,
My son participates in all activities he wants to, is popular at school and is a tree climbing chandelier hangin' ruffian like the rest of his brothers and sisters.
Like one of the above posters, we did alot of play therapy, I call it lifestyle therapy, incorporating everything from playing to climbing into the car-seat to reaching for items in the grocery store, as therapy, we also did several years of formal therapy esp. water,
Best of luck whatever you decide,
surgery is a wonderful intervention for many, and if the parent says the child needs it thats good enough for me;
but if surgery is unneccessary it would be
well, unneccssary, I dont have to spell that one out for you...general anesthesia, pain...
and either way has inherent risks that affect total recovery such as immobility at young age...
~Mary

[jaden9801]

My son is four and has had two surgeries and lots of physical therapy. He was 10lbs1oz at birth and I didn't get a c-section either. He has 80-85% use of his right arm now and I know how blessed he is to have it. His right arm is weaker than the left and he does have difficulties. He did have difficulty crawling, in fact it wasn't until after both surgeries that he was able to do it at all. He is left handed and I have to remind him alot daily to use his right arm. And not to sound dumb, I know what bpi is, but what is robpi? Best of luck, jd

[brett]

hey!
i am now 23m from Aust ! i was in the same situation as you child!
feel free to contact me on the email and i would be more than willing to answer any question that u may have in regard to your child!! would be happy to help!
be assured she can live an awesome funfilled life with her problem! god knows i am
brett.heinrich@elders.com.au
regards
Brett

[Joanie]

Hi jaden9801,

ROBPI is Right Obstetrical Brachial Plexus Injured, or Injury, depending on how it is used in a sentence.

I am LOBPI. That's the same thing, except on the left side, and, of course, "injured", because I am not an injury. I am a person who HAS an injury.

Joanie