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Recovering

Posted: Wed May 07, 2008 3:48 am
by AyoubsMom
Hi

My 2 and a half month son has BPI...does any moms here had a child with BPI and recovered on their own without surgery?...what are the signs?

King regards, P

Re: Recovering

Posted: Wed May 07, 2008 11:56 am
by Jake'smom
My son is almost 2 1/2 and has had no surgery. I wouldn't say he's completely recovered as there are still some things that are different about his arm than the other one, but there's really nothing he can't do at this point with that arm. It's completely functinal. He lacks some strength in it, and has a very slight contracture (meaning his injured arm is slighty bent at the elbow) you can't really tell unless you try to straighten it and then you see that it doesn't go completely straight.
As far as signs of recovery, I think they are probably very different for each child. I can just tell you what we noticed over the 1st few months. At birth, he could only move his hand and fingers and his wrist was turned away from his body. He turned his wrist toward his body before we left the hospital. Within the 1st week we saw some slight jerking of his arm at the shoulder. So his arm would almost twitch up and down-it was very subtle. By 6 weeks he could raise his arm up in the air and bend his elbow with the help of gravity to touch his face or grab for a toy. His milestones get kind of blurry for me after that b/c he made faster progress after that. I will email you a slideshow of pics I have of his arm between birth and about 1 1/2 or so. We haven't had surgery but he have done PT and OT. Although we aren't currently. We were discharged b/c they felt like there wasn't anything else they could do right now. He needs strength training and they said that until he got a little older it would be difficult to work on that. He had acheived all the goals they had set for him so they released him for now. He will go back if we see him having difficulties as he gets older. I will email you the pics. Please don't hesitate to ask if you have any other questions.

Re: Recovering

Posted: Wed May 07, 2008 11:58 am
by Jake'smom
You don't have your email listed. Mine is shariwessels@sbcglobal.net Just email me your address if you want to see the slideshow.

Re: Recovering

Posted: Wed May 07, 2008 8:39 pm
by Jeannette Curran
I think everyone's recovery is different. It all depends as I understand on how quickly a child can bend their arm to get the hand to the mouth in a sitting position. If this is done by 3 months chances are good for an excellent recovery. My daughter didn't do this until 5 1/2 or 6 months and never needed primary surgery. She can move her arm well but is still internally rotated which causes structural problems for the shoulder and many secondary issues like elbow flexion contactures and difficulty with supination and scapular winging. She is only 14 months and it seems possible she may need a Triangle Tilt in the future but we hope not.

Re: Recovering

Posted: Thu May 08, 2008 3:52 am
by AyoubsMom
Thank you

i hope this finds u well. My email address is p.karamagi@gmail.com

2.5month ago my sons arm wasnt moving at all,i mean no movements at all. Then he started movind his shoulder and wrist in a month, then his fingers but very limited.

I see so much changes in his arm...it seems very strong and he tries so hard to raise it up...but he doesnt bend his elbow at all.When i try to raise his arm he tries to resist so much. I dunno if these are signs or recory or not.Seems like his upper arm works so well than his lower arm.

Sorry for mispellings, english is my 3rd language.

Take care and i hope all our kids have full recovery. Am so glad for those who recovered without surgery.

Love and u all in my prayers.

P.

Re: Recovering

Posted: Thu May 08, 2008 9:39 am
by Jake'smom
I'll send you the pics. The fact that he's trying to resist is actually a good sign. It means he has that control over his muscles.
I have to disagree with the hand to mouth sitting position by 3 months thing though. I just don't think there is any way that you can put such a rigid time frame on it. When my son was born they told me (including a lot of people on this message board) that he had to be able to bend his elbow by 4 weeks laying down. My son didn't do it until 6-8 weeks and he's recovered beautifully.
The questions is how much function will the child have and I do think that the sooner they start to make progress indicates that the nerves are not as damaged. IF they are torn or avulsed-I don't think much progress (if any) happens at all w/o surgical intervention. If they are stretched then the nerves start to heal themselves more quickly. I think (correct me if I'm wrong)that primary surgery is needed ONLY if the nerves are torn. That's the only surgery that is very time sensitive for you to consider. Are you going to therepy? Have you seen any BPI specialists?

Re: Recovering

Posted: Fri May 09, 2008 3:50 am
by AyoubsMom
Hi

Thank you so much for the pictures. Your little boy is very cute. Am so happy he did so well very soon, he is very amazing baby and special too. Seeing his pictures gives me a lot of hope, thank you so much for your kindness.

At the moment am in Algeria and looking forward to come to US in few weeks. I do range motions with him at home. The health care in Algeria is not good, both my son and husband are US citizens and once am in US am looking forward to meet BPI specialist.

I have noticed that, at night when my son in his sleep, he raises his arm above his body(not bending the wrist) when trying to stretch himself. I never see this during the day unless when he is very mad(wanting to nurse), His wrist has changed position too, its not curved away from his body like it used to be but towards his body little bit.

When I do range motions with him, he tried so hard to resist and its getting stronger and stronger everyday.

When he was born here, doctors didn't even let me know about his arm, I didn't find out till few hours letter, also I didn't know how to handle his arm tit few weeks after his birth. The doctors here don't even know how to deal with this. So i did my research online and found all information online(thanks god i have an Internet) and came across this wonderful group. My point is I feel that may be he would have recovered sooner or better if I did handle his arm better. I will never know.

Take care and thank you so much for your replies and kind emails. i hope you are doing well.

Love, P.

Re: Recovering

Posted: Fri May 09, 2008 9:41 am
by F-Litz
Dear Ayoubs Mom,

Nerves grow in at one inch a month. And the nerve has to grow from the neck down the arm. So it takes around 4 to 6 months to get power to the biceps muscle.

Range of motion is done only to keep the joints supple and to give the brain the message that there is an arm. But it doesn't make the nerve grow any faster or any slower. Nothing can make the nerve grow any faster.

There's nothing else you could have done to make any of this healing go faster so please don't feel bad. As mothers, we try all different ways to take on the blame and guilt and you're doing what you have to do... doing range of motion, learning about bpi, and asking questions. You are a good mommy!

I am hoping for the best recovery possible,
francine

Re: Recovering

Posted: Fri May 09, 2008 10:57 pm
by Jake'smom
I agree w/ the last poster...you shouldn't feel guilty about anything! I know that as mom's we take so much responsibility for our kid's injuries, but it's not our faults. You are not the only one whose dr didn't tell them what this was. That happens in the U.S. a lot too, b/c the drs are afraid of lawsuits and they know that they are at risk. My dr. also didn't tell me what it was that was wrong w/ his arm. Thank goodness I had a great pediatrician who told me what it was and sent me to a neurologist right away.
I think that the first few months, they recover to whatever extent that they will on their own and it doesn't really matter what we as parents do. You are doing ROM exercises to keep the arm from getting tight and that's really about all you can do for the first few months. I'm not exactly sure b/c my son didn't have primary surgery, but I think that they don't do that until 5-6 months anyway (someone correct me if I'm wrong on that).
I'm glad that you found us to talk to though b/c I know how great it felt to talk to people who know first hand what it's like when this happens. It was also great for me to hear about older children and adults w/ this injury leading normal and full lives b/c at that time I didn't know what the future held for my son and hearing about people living w/ this injury made me feel a little better about his life even if he hadn't recovered much function in his arm. I don't if that made sense but I hope it did!

Re: Recovering

Posted: Sat May 10, 2008 8:56 am
by ptrefam
Here is a thread with some great discussion. Also it has a link to a little girl, Femke, who had a wonderful recovery on her own. Of course each one is different and it is important that you see a BPI specialist to determine the best treatment for your child. This is just so inspiring, I thought you might like to see it.
Sue