Video story of recovery of LOPI

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Video story of recovery of LOPI

Post by marieke »

Femke is just beautiful! I am very glad to see her recovery is going so well.
Keep up the good work, have fun and play little one!

Marieke (LOBPI, age 30)
http://nurse-to-be08.blogspot.com/
(Mijn moeder is van Holland, Ik begrijp een weinig ook het.)
My aunt and uncle and 2 cousins live there still. (Utrecht, Hilversum en Den Haag)


Message was edited by: marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Video story of recovery of LOPI

Post by katep »

I don't think the video is suggesting that waiting a year is the right decision... at least, I hope not.

It's important to note in the video that surgery was contemplated at 3 months of age, and then ruled out by sufficient recovery by 5 months of age. By showing later recovery, the video shows very well the predictive value of observing recovery patterns over the first months. But the critical decisions were made by 5 months of age.

New parents need to keep in mind is that this child did make certain milestones within "the time frame" which indicated that recovery would be sufficient without surgery. Many children recover even faster, and some slower or not at all. The same pattern of recovery, but occuring much sooner or later, may mean an entirely different long-term prognosis. That is why seeing a specialist, who is well-educated in what recovery patterns to look for, is so important. It is difficult for some parents to understand why a surgeon will say "yes" or "no" for surgery... but this is a good example of how, by observing the recovery over the first 3-5 months, a surgeon can predict later recovery with reasonable accuracy (although definitely not perfect, unfortunately).

Kate
Mandie
Posts: 429
Joined: Tue May 21, 2002 4:46 pm

Re: Video story of recovery of LOPI

Post by Mandie »

I think it is GREAT that it was posted. It gives people a chance to see some of the good when they come here with questions. While the sad stuff needs to he shared, it gets depressing. Believe me, I know from my own self.

I hope to see MORE of her progress in the future!
Tanner's Mom
Posts: 288
Joined: Sun Oct 03, 2004 12:29 pm

Re: Video story of recovery of LOPI

Post by Tanner's Mom »

Could Femke be any more adorable? :)

I think it is so great that you documented Femke's recovery like this. I sure wish we would have done the same. I hope some of the new parents find hope from seeing this video. Thanks so very much for sharing with all of us!

Lisa
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Video story of recovery of LOPI

Post by admin »

Thank you so much for the video. Our son Braden was born on May 30th with the injury. We did have elbow flection at 2.5 months. However, the doctor at the time said he would not get any better. After seeing your video and finding this website I have hope. We have been with a therapist 2 times a week since he was 3 wks old. He also has torticollis. How much therapy did you do at home? And what kind?
Thank you in advance to everyone.
Danielle
johnstrike
Posts: 33
Joined: Fri Sep 01, 2006 4:42 pm

Re: Video story of recovery of LOPI

Post by johnstrike »

@Danielle. In the first months we had a therapist once a week to check her ROM and to teach us the exercises. We did exercises with every change of the diper. Besides that we rubbed her arm gently with a toothbrush to stimulate her sensibility. Also we tried to play as much with her arm as we could.

I never heard of a doctor that could predict that a improving arm would stop with progress at 2.5 months. Is this a real BPI specialist? Our doctor says improvement can continue (not start!) in the first 2.5 years. I would suggest to get a second opinon. Be sure not skip any milestones for surgery.
Amy
Posts: 28
Joined: Wed Aug 30, 2006 6:19 pm

Re: Video story of recovery of LOPI

Post by Amy »

I was just wondering, when are the surgical milestones?
Thank You!
Amy
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Video story of recovery of LOPI

Post by admin »

Some doctors say that if there is no hand to mouth by 3 months then surgery should be done. Femke proved them wrong! If nothing at all has happened by 3 months then mjaybe they are right, but why would anyone want to mess with natural recovery if it is happening? Thank you for posting this beautiful story.
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Video story of recovery of LOPI

Post by katep »

I think most surgeons are now going with "if there is no hand-to-mouth and the hand has not recovered (indicating more global plexus damage) then surgery". There is a multi-center clinical trial underway right now which is attempting to address the timing for primary surgery.

I read one paper by Gilbert (quite awhile ago and I can't seem to find it here so I'll paraphrase!) where he recommends if there are no biceps and deltoids by 3 months then surgery. Paraphrasing, his basic argument was that these children frequently do not recover sufficient power of movement, and the big problem is that by the time you realize the child is not going to fully recover, they have *partially* recovered and then it is very difficult for the parents to sacrifice that known partial recovery for possible improvements from surgery. Basically, better to do primary before the parents get their hopes up too much... !!!

Not exactly sure I agree, but I can see his point.

Kate
bladow03
Posts: 17
Joined: Thu Dec 29, 2005 12:15 pm

Re: Video story of recovery of LOPI

Post by bladow03 »

This is so great to hear. My little girl is having a very similar story. She did not have any arm movement until about 3 1/2 mos. and we actually got it on tape too!! We were seeing the specialist quite frequently because she was right on the line for surgery. However she keeps on improving!! At her last therapy appt. (we only go every 3-4mos) her therapist said she is amazed by the recovery and in her experience has never seen a child keep gaining in this fashion. Of course it is not the norm and each child is different but its nice to hear that another child is experiencing these results. Thanks again for sharing!!

Tara (mom to Ava 1 1/2)
Locked