United Brachial Plexus Network, Inc.

I'm so full of questions this week. Any of you do therapy at home with your children? We do not have ANY therapists OT/PT in our area that have experience working with children with BPIS. We have easter seals but ofcourse Ashley doesn't qualify for that program anymore after 3 yrs old. I've met some fine therapists who work with kids on unrelated issues but i'm really on the lookout for "experience". We've been doing some things at home like working on fine motor skills, stretches, etc. Is it acceptable to work on these things at home with your children without actually bringing them someplace? I'm at the point where after 6 years what could they do to your child that your not doing??

hey Ashley,

Do you have access to a ymca with indoor pool or anyplace with indoor pool? I have found out that we get better stretches and excercise in the water. Just a thought.

When I was young all therapy was home therapy and part of my daily life.
I did not even realize how much of it was therapy.
I thought some of my therapy were games and my family was playing with me.

Considering the extent of my injury it worked well for me.
My mother was very persistent and determined.
She had to be, I was very strong and could be very stubborn when I did not want to do something.

I think even if a parent does home therapy it is good to have a child evaluated on a regular basis by professional OT/PT for poor habits.
Only because I know that some of my compensation has created secondary injuries.
Maybe they could (not positive) have been prevented if I had found someone who understood bpi and compensations toll on our body.
Kath ( adult/robpi)

Ashleysmom- sorry I can't remeber if I know your name or not.

We currently take Javier to Shriner's for therapy once a week. We just found out that my husband is being transferred back to VA and what we are planning on doing is take him to a facility for pediatric ot/pt and have him evaluated by the therapists at Shriner's every 3 or 4 months. Maybe if you don't live to far from a specialist you could do something like that. I personally don't see anything wrong with doing home therapy. My parents are in NJ, and from VA it is about a 5 hour drive. But considering we have family in the area, it is worth the drive every few months. good luck

MArlyn

We were doing home therapy only for a while when we moved and had issues with insurance. Personally I like being able to talk to the therapist to know when to change up the home routine and to help with braces and splints. If your child has developmental delays due to the injury and is over three, check with your local school district for an IEP evaluation. My doughter was provided with weekly therapist visits and preschool (including transportation)because her fine motor skills were delayed. We have worked with three different school systems and all the OT had some experince with BPI kids. The bulk of the therapy was done at home, but the therapist gave us ideas and stratagies.

There is an excellent OT/PT program at Boston Childrens but its 1 hr away on a good day. Maybe I could take her every couple months like some one mentioned to be "evaluated". She was doing some pool therapy about 3-4 days a week over the summer but now i guess i just don't know what to do next. Two years in a row I had her IEP done & they thought she was age appropriate. She can't use her right hand for goodness sakes but she's age appropriate. Our special needs program for our district totally ticks me off.

JAvier with his paralyzed arm and hand was also deemed "age appropriate". I tried to get Early Intervention for him. Have your BPI doc help you fightit. You're right, how can they not be delayed with only the use of one hand/arm?


MArlyn

Hi, Melissa. When Nicole started 1st grade last month, we decreased private OT and Aqua PT from 1x/wk each to 1x/month each. Also, she was getting weekly PT and OT at school until last Feb. when they discontinued her svcs. They tried in Nov of 2004 and I fought it and they had to maintain svcs until we resolved it in Feb 2005. When they first wanted to discontinue svcs., Nicole was concerned and felt that she still needed their help. However, just before our last meeting in Feb., she told me that she didn't want to get pulled out of class for OT anymore (the OT worked w/her in the classroom, but they were doing things that the rest of the class wasn't doing). Also, she was getting PT before school, but didn't want to get pulled out of class for it when 1st grade came around. Out of respect for Nicole's wants, we gave up fighting and discontinued school PT and OT. Nicole came off the IEP and went onto what the school calls and SAT (Student Assistance Team). I think it's more a way to make me feel "better" about discontinuing svcs., but I guess it's better than nothing at all. Under the plan, the OT monitors Nicole in the classroom and cafeteria and the PT monitors Nicole in PE occasionally (w/o her "knowing" they're watching) so they can see how she naturally functions. Part of their reasoning is that she knows what the PT and OT want her to do and will "perform" appropriately for them, but they can better assess any problems by looking from afar so to speak. I'm also trying to get into the classroom for some visits to do my own monitoring.

Anyway, I think this age is a good time to cut back on the formal private therapy. Otherwise, they're going to get burned out (IMO). I'm sure you've learned a lot along the way and also a lot of therapy at this age comes from the natural daily routine of living. I agree though with at least going once every few months to keep a close eye on how things are going and to learn any new ideas. Another mom who isn't near any good therapists said that she videotapes therapy sessions when she goes (every 6 or 12 months I believe).

Also, I think that alternative forms of therapy are great too. Nicole just finished therapeutic horseback riding (no riding in the winter) for the year and will do a 2-month weekly ski program for Jan-Feb. She also does Irish Step Dance and Kindermusik weekly.

If you think that Ashley should be receiving school svcs. and want to fight for them, then Dr. Waters can possibly help you. When we last saw him, Nicole had just lost svcs., and he offered his help in fighting for school svcs. if we needed it. I was impressed by his offer to help us with soemthing like that.

Before you start the "school fight" though, I'd have a talk with Ashley to see what she would like to do and if she feels that she needs help or how she'd feel about getting pulled out of the classroom. I feel strongly that this is an area where we greatly need to respect our chidlren's feelings. Plus, the school fighting can be time consuming, so be prepared for that if you choose that route. I recently bumped a couple of threads with some good school info. on IEPs and 504 plans. I hope this helps. It's always nice to see your name here.

~Tina, bpmom@comcast.net, Mom to Nicole (6 1/2 y.o. w/LOBPI) & Joshua (1 1/2 y.o. w/NOBPI)