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Help in INDY

Posted: Wed Mar 27, 2002 4:49 pm
by momcares
I am in Indianapolis, IN my son is almost a year old. His waiter's tip is only noticeable to me, and the therapists. To look at him he looks normal. The only test that has been done is the swallow study back in late January, 02,that showed he's been aspirating on liquids. He is very low toned in his oral skills and has never closed his mouth all the way. I did request that the neurologist do an EMG and or a MRI but he told me his injury is so mild that he didn't need one. Now he has all these oral issues on top of the sensory issues which makes the oral motor therapy difficult since he doesn't like for his face to be touched. I'm not sure if we are doing ROM exercises but we have a brush (looks like a vegitable brush) that we use every 90min. to help stimulate the nerves. He is a left obpi with his shoulder slightly leaning forward. His ped. told me this is not a painful injury (he's never called it an "injury") and that he wouldn't have any problem as he gets older. I would greatly appreciate finding out about some specialists in INDY. He also has a cavernous hemangomia with a knot in it under his bpi arm. Anybody have a hemangomia?

Re: Help in INDY

Posted: Wed Mar 27, 2002 10:57 pm
by karen r
I've heard that there is a bpi specialist in Indianpolis but I don't know the name or where the doctor practices. I'm sure someone will post here though.

If you're interested in another opinion, the Ohio BPI Picnic on June 1st in Columbus (3 hrs. drive from Indy)is pleased to host a team from the Brachial Plexus Clinic from Baylor College of Medicine/Texas Children's Hospital in Houston, TX. You can find out more information about the picnic and print a registration form at:
http://members.aol.com/kritz74433.

Many of us have traveled to Texas for treatment for our children. This will be the 3rd year that TCH has come to our picnics to evaluate children with bpi for free. If you have any questions, don't hesitate to contact me: ohioerbspalsy@aol.com


Re: Help in INDY

Posted: Thu Mar 28, 2002 12:46 am
by admin
It seems from your post you really need to see a different doctor!! It may seem not too bad now but what about as he gets stronger and the stronger muscles grow stronger and the weak ones stay weak?? That's when the problems arise...I hope someone here can guide you to someone good.
T.

Re: Help in INDY

Posted: Thu Mar 28, 2002 3:25 pm
by blakesmom
I was told by an ortho that lives here in Peoria, IL that Dr. Alexander Mih has dealt tith the BPI. He is at Indiana Hand Center. We wanted to go there for a second opinion, but he doesn't accept our insurance. They are very helpful in sending information. I think their # is 1-800-888-HAND. Just going from memory, I hope it is the right #.

Re: Help in INDY

Posted: Thu Mar 28, 2002 4:00 pm
by momcares
I printed the registration form. Thank you!! I really don't think Toni needs surgery, but I am concerned about his oral issues (I've read that they can be caused from nerve damage). Do you think that something like that could be found in these evaluations? I wouldn't want to take time away from a child who has severe nerve damage.

Re: Help in INDY

Posted: Thu Mar 28, 2002 4:10 pm
by momcares
Thank you for the telephone number...I'm calling now. They don't accept my insurance either. At least we tried. Thanks again.

Re: Help in INDY

Posted: Thu Mar 28, 2002 4:12 pm
by blakesmom
Has your child seen a developmental pediatrician? blake sees one once a year for his BPI(for insurance purposes) and he checks out how Blake is developing at everything including his BPI. He sent Blake for a assessment with a speech therapist last year just to check him out(he was o.k., actually advanced, but we took him just to be sure) This ped. is located at our Easter Seals. Maybe you could check this out? good luck.

Re: Help in INDY

Posted: Thu Mar 28, 2002 4:18 pm
by blakesmom
for ROMs, go to the resources page on this site and click on ROMs and there is a description and a diagram to help explain what should be done for your child.

Re: Help in INDY

Posted: Thu Mar 28, 2002 5:49 pm
by momcares
My service coordinator for his therapy is looking into some development care at the children's hospital here in INDY. His therapist does some evals too; last one was at nine months and he was at a 4 month level with fine motor (they just started working with him orally). He's almost advanced with his Gross motor (walking, etc.) but is still high toned in his trunk and hips. I'll keep you posted and if you hear of any specialists in Indy let me know.

Talk to ya Monday,

Have a happy easter!!


Crystal G.