Video story of recovery of LOPI

[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

[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]

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]

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]

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]

@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]

I was just wondering, when are the surgical milestones?
Thank You!
Amy

[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]

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]

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)