Frustrated !!!!

[admin]

Hello!

My wife and I are very frustrated and concerned for our daughter Julia. She has a Rt. BPI C5/C6 Neroma
C7 avulsion. She had primary with Dr. Nath at 6 mths,
mod quad at 12 mths, we used TES, have a fantastic therapist for her, are using Botox to weaken strong tricep, and yet bicep is not working. She is now 17 mnths, 3 mnths post op mod quad. Are we expecting to much to fast? I thought she would have so much more by now ? I'm starting to think it's never going to come back and its killing me. I hope some of you with similar inj. can tell me stoies of late return. All the children we've met with good return had more faster than Julia
God Bless All Our Kids
Distraught Father Dan N.J.

[PeggyUBPN]

This sounds very similar to our daughter's injury. All nerves in the brachial plexus were affected, but C6 & C6 were covered with a large neuroma and C7 was avulsed.

I think you should be patient. It is a slow, and not gradient, road. It's going to take several months to see reults from the mod-quad and you'll see it in little improvemnts here and there.
If you'd like to email me, feel free.

Hang in there!
Peggy

[admin]

hello,
I just wanted to share our story on Marcus... Marcus is now 3 yrs. old and has had primary at 6, mod quad at 12, (with Dr. Nath/Shenaq) tendon lengthing surgery in is wrist at 26 months and a botox injection (in hopes of weakening his tricep muscle because it is overpowering his bicep muscle.) I too thought the recovery process would be much faster however I have learned that it will be a slow process for Marcus. As far as movement Marcus does lift his arm.... but is no where close to lifting it behind his head on his own. He can twitch his fingers and has some what of a grasp but his hand is not in a good position when he does it. He can't bring his hand to his mouth.. and can't supinate... I can't say what you should expect or should not expect because every child's injury differs... however I wanted to share a little about Marcus's injury because it seems similar to Julia's injury... if you don't mind me asking what is Julia able to do now with her injured arm? and does she have movement in her hand?? feel free to ask any other questions.. or email me...

Jenny

[admin]

Yes, sounds the same as our Angel,
she is now 2 and has almaost a 90% upward reach..YEA!
She HAS full movement in hand /wrist, but can not yet pull outward, keep the good work up

[admin]

Jenny,
Julia has always had movement in her hand since she was born. She is still limited though. She has trouble holding things in her hand (a lot better since birth) and can't do fine motor skills ( like pick up a piece of cereal). She can lift her arm about 85-90 degrees, but can't bend her bicep. She is starting to use her right arm a lot more then she ever has lately. We have also just started seeing return from primary surgery. So I guess I know it's going to take a while, I guess I just need alittle more then what she has.

Michelle ( Mom )

[LisaL]

Our daughter had C5&C6 injury. We had primary at 6 months and MQ at 11.5 months. It was a slow recovery for us. We really didn't see any improvement until after about 6-7 months post MQ. She really didn't use her bicep muscle the correct way until she was around 2 years old. She is three now.

Lisa

[admin]

My daughter had mod quad at 22 months and we didn't see the real good stuff until about 5+ months later.

[Karen w]

Our daughter had similar injuries with primary at 5 months and mod quad at 12 months. We saw immediate improvement in arm movement(especially lifting up over the head)right after mod quad, but it took quite a long time before we saw any bicep gains. I would say 7-12 months post mod-quad, we began to see some improvement in bicep funtion, so just be patient. She is now 2 months away from being 3 yrs. old and she can bring her hand to mouth, but the last little action (like putting a piece of food in her mouth) is sometimes still difficult for her. We have used TES and NMES as well. I know each child is different, but be aware that your daughter may still be several months away from gaining bicep movement. Just keep up the therapy and prayers!!