United Brachial Plexus Network, Inc.

Hello everyone. I need help locating a PT who specializes in water therapy for our 18 month old LBPI. We live in the San Francisco bay area. The recomended hospital only has one PT who works with infants and she is booked with a "year long" waiting list. Maybe someone can point me to a website which has pictures of appropriate exercises. Thanks in advance for your assistance.

I would recommend that you contact your local YMCA. While the staff at my local YMCA is not trained in PT, per se, they have lots of experience in working with children with paralysis. I have had an awesome expereince with my YMCA.

When I was first researching PT's for our daughter Tara, LOBPI I ran into this same problem. The pediatric PTs in our area had huge waiting lists.

Don't give up! I decided to call every PT clinic in the area regardless if they took kids or not. When I called for a consultation I explained my daughters situation - that she needs therapy now not a year from now when she moves up a list. And that all the ped. pts are booked can they fit her in even though they don't see kids. That more important than her becoming an on going patient can they teach us as parents what we need to keep up until we do find a pt.

And for the last 3 years Tara has been going to a PT who WAS a pediatric therapist and had BPI experience. He just switched to adults over the years - It just didn't say this in the 'ad'. This clinic offers a swim therapist that we wouldn't have had through the private ped pt clinics. And today there are a few more kids who come in there.
Besides the twice a week awesome therapy my daughter gets, the part I love is that this clinic takes pts in training and we get to spread awareness & BPI therapy to lots of new pts.

So, keep calling until you find someone who will work for you and your child. There will be someone out there - it just might not have the pediatric care broadcasted.

Brenda
mom to Tara Grace, LOBPI

Brenda,

Thanks for the great advice. I've been looking for a water therapist for my infant son, and although some of the "ads" say water therapy, I called and they don't do kids. I had just asked it as a yes or no "do you work with kids" question. I might just try calling again and see if they would be willing to see my son. We have our own pool, so I just need some suggestions for what to do with him. Thanks.

Please just bring your kids into the water and have them play. ANYTHING they will do in the water is something a therapist will do with them as well. At age 18 months, it's not complicated and it is always play therapy. Bring toys with you. Throw toys at each other. Dunk the toys in the water (with the affected arm). There's a whole list on what you can do in the water in the Awareness section. Just splashing is a great workout. My daughter had aquatic PT for about a year and there was nothing they did that was anything different then what I would have normally done myself (at that age). As they get older, then there are things that you could be taught to do with her also not complicated. Just have fun because being in the water is great. There are the mommy & me swim classes and family swims at the YMCA's, etc. Enjoy!

Guest:
Also look into local schools for the disabled (that's where we did aquatherapy). And, there is a company here in the east called SafetySwim. They operate franchised swim centers. The nice thing about their pools is that they are kept at a warm temperature. Even if you can't get an aquatherapy program, try a mom and me. And don't forget, swim lessons when your child gets older.

good luck,
claudia

Here are some great ideas:
http://ubpn.org/awareness/A2003aquatic.html

Also, if there is a year long waiting list for the PT who works with infants, then perhaps there are other PTs or OTs who work in the same pool and have experience with little ones. It's hard to believe that they wouldn't hire someone else if there's that much of a demand. You can't really wait a year for a therapist. You might also see if there are other facilities. Check with other area hospitals and wellness centers; ask the Pediatrician for suggestions; ask any "land" (non-aqua) therapists that you use. We feel that aqua therapy has been very beneficial in our daughter's recovery. She's 6 y.o. now and has been in aqua therapy since about 1 1/2 y.o., amazingly w/the same pool therapist except for during maternity leaves. BTW, she's also the therapist who wrote the article in the above link.

~Tina

you might also want to try your states Early childhood intervention, here it is called First Steps.
My daughter graduated from First Steps at her 3yr bday this past december and we had a heck of a time finding an aqua therapist for her. Her case worker thru the Dept. of Mental Health(have to go this route in our state for 1st steps) found us a therapist and an actual therapy pool....HURAY. We live in MO, and the Dept of mental health follows the child for 5 yrs. May not get much $ support for therapy after age 3 but the case workers (at least ours)are very helpful. She has even been instramental in helping with our daughters 504 and IEP.
I don't know how your state works, but I thought I would throw this out just in case it helps

Dr. Nath just told us to enroll Danny in swimming lessons! That's how we handled it. I initially checked into aquatherapy and found problems finding someone, as well. The swimming lessons have been great. I don't know why I worried so much! I think sometimes we get too worried that *everything* has to be done for our children by licensed, experienced therapists. But you can actually do a whole lot yourself!

The important thing is to get that water resistance to help the arm strengthen. If you can get to a YMCA yourself, I say just take your child to the pool and play! As someone already said, a therapist isn't going to do anything much different than you would do yourself. And you're a whole lot cheaper!

Good luck,
Janet

I think that swimming lessons are better than nothing in the pool at all and are also good as children get older (although I'm not sure what swimming lessons would entail for an 18-month old baby). I know though that Nicole has gotten much more out of pool therapy over the past 4 1/2 years than she would've gotten from swimming lessons. I do plan to get her into swimming lessons and know that the pool therapy might have to phase out, at least to a certain extent, when she starts school full days in Sept., but in the meantime we'll continue with the Aqua PT. I'm not sure how well Nicole will like the swimming lessons b/c she doesn't like cool water pools (to Nicole, anything below about 90 is too cold). Again, any time in the pool is better than none, but I definitely recommend therapy in a heated pool and also at least periodically with a licensed and experienced aqua therapist to, at a minimum, monitor the child and teach new things to the parent. Just my opinion. As far as expense, we've been thankful to have good insurance benefits accompanied by a medicaid waiver that pays for the $15 co-pay.

~Tina