No Surgery Route

[kksmommy]

I think we have decided to go the no surgery route. We saw Dr. Kozin in April (she was just over 3 mos)and he suggested waiting until she was between 6-8 mos. to see if she got biceps. She got them a week after we left. We haven't seem him again ( 10 mos now) but keep him informed of her progress. She can get her hand to her mouth and raise it to her browline. She still has a tendency to draw her wrist back when she is grasping but I have noticed quite an improvement in the last few weeks. She is actually letting her affected arm hold things while she plays with the other one. At this point have am content with the function she has and I know as she gets older and is able to understand her injury she will be better able to participate in therapy. I cannot risk the level of function she has now to potentially make it better with the possibility of it becoming worse. I was just wondering what problems to anticipate if we do no surgery. I am still unclear about when and why they get contractures and if she is at risk. Are the any of you who chose the non-surgical route? After 12 mos what obstacles did you face? If primary is not performed, what are some of the surgeries that could possibly recommended?

[johnstrike]

I was wondering if a real OPI expert ruled out the possibility that the bending of her arm is achieved with compensation.

I get a little suspicious when you write "She still has a tendency to draw her wrist back when she is grasping but I have noticed quite an improvement in the last few weeks" that might or might not be a hint that she is compensating.

With my daughter it took two experts to rule out if she was compensating. So it's not always that obvious.

[Mandie]

we went the no surgery route with Sarah, age 5.
The decision is your own, it is your child, and if you feel you made the right one, good on ya!

You can email me with ANY questions you might have and I will answer them there. (I'm running late for work)

msoileau@charter.net

~Mandie

[claudia]

The contractures can show up at any time and can be sudden or something you notice slowly. Remember to stretch fully and carefully everyday. Plus, I found massage to be a big help (helps with pain too).

As for secondary surgeries...the ACR and tendon transfers are the two you might be looking at.

I recommend having Kozin look at her again, as a BPI doc should keep an eye out whether the decision to do surgery or not is made. btw, if you are not going to see him because you decided not to do surgery, and you think he won't be accepting of that decision, you are wrong about him. Kozin fully accepts parents choices and even cancelled a surgery that we were going to do on Juliana because we ALL were waffling on it. Not every child that a BPI doc sees and follows is a surgical candidate.

At 10 months old, you should be going to playgrounds, swimming, picking stickers off the windows... doing lots of stuff that requires reaching and stretching.

I'm so glad for you and April that she got function back on her own.

claudia

[kksmommy]

We have not been back to Dr. Kozin yet because he hasn't recommended another visit. We were going to go up in early Aug. but after talking with Linda, his nurse, she said he wouldn't need to see her yet because she was getting 90 degrees. I am thinking we will most likely go back in Jan when she is just over a year for another eval.

Her OT said that she is using her biceps rather than compensating she is also using her shoulder muscles. She has experience with BPI but she is the only one I really have to go with. We don't have a close BPI specialist close and her neurologist is an idiot when it comes to BPI.

[tcon]

we have a 5yr old, no surgery-to date but I never rule it out. I highly recommend being followed at least every 6 months for the 1st 3 years by BPI expert. These drs pick up on things we have no clue about. I agree, Kozin is a great resource, even if you go the no surgery route. I truly believe he only recommends surgery if it is needed. dr waters as well. They are both known as the conservative doctors.

we were in the same boat as you for the firs 2 years, I wasn't sure if we should have surgery but i kept going back to the great function our daughter had and didn't want to risk it. Actually, one of the drs we had seen at 1 yr of age, who recommended surgery a few times (which we obviously declined) saw her when she was 4 and was shocked that he had recommended surgery previously.

Good luck. follow your gut but dont ignore that she should be followed to monitor progress. some OTs and PTs, as well as some drs are fooled by the compensatory movements these little ones develop

[Kristie]

My son is 6 and hasn't had surgery. But we are not closed to that option if and when the need arises. We are very particular about why we would do surgery though.

The issues he has today are weakness, lack of range of motion, abnormal posturing of the arm, etc. He is extremely functional and I totally understand being concerned about losing some of the function due to surgery. As I understand it when surgery is performed there are some loses to get some gains and for my son I have not been entirely convinced that I want to make that trade.

For awhile we were pretty aggressive with his therapy but have slacked off the last few years. Well it is time to get aggressive again... and not let up! I need to get a call into his therapists tomorrow!!!! Thanks for the reminder!

Please feel free to contact me if you would like to chat further!

Blessings,
Kristie

[MWhitted]

Hi...I currently have a 11 month old son with a ROBPI and we have yet to have surgery. His doctor has been impressed with his progress and even though he is still lacking in some areas, I know that we are making the right choice. We have a follow up in Jan to see if we will do surgery for his wrist. One thing that made me feel better about the no surgery thing was that my doctor didn't make my husband and I feel like there would be no hope if we waited. Go with your gut and God bless you.

If you wanna talk, email me.

Maria
Mothe of Amaru

[Ben's Dad]

Hi Kristie,
My son is 7 and hasn't had surgery also. A lot of the things you mentioned are very similar to our son as well. I was curious to know what abnormal posturing your son has. We've noticed that too, especially when he's tired. And why you want to get aggressive again with therapy, because we have thought about the same thing. Thanks.

[Kristie]

Hello Ben's Dad~
Ian arm hangs slightly forward and bent a cross his abdomen. I recently also noticed that his wrist and seems to droop down as well.

While at camp this year I realized that if I don't keep being aggressive with therapy then Ian will lose what he has been blessed with.

I am willing to do surgery but to my understanding you often times lose to make a gain. I am not convinced that Ian would gain much but could lose function instead. So I am more than willing to pursue very aggressive therapy... now only if I can get my docs to agree!

Blessings,
Kristie