Improvement ! & Therapy ???

[Brenda]

I am just curious as to the amount of therapy that you/your child had after the primary surgery? Like how often and for how long? I am asking this for one of my daughter's pts.

I know that every child is different. But we are seeing a huge improvement! Tara had her surgery on June 8, prior to that she had no arm movement what so ever! (Her dad LOVINGLY called it her wet noodle arm.) After we removed the binder, I started looking for a PT. I found 3 and decided to go with all of them. I like them all and they each bring something different to my daughter. So I take her to each PT once a week. Yes, 3 times a week. They each do different things with her.

She has not regained any 'control' of her arm, however, she seems to be aware she has another arm and the muscles respond when stimulated. When something she wants is placed in front of her, the upper half of her arm tries to move.

I know it doesn't seem like much to some. But she has gone from a wet noodle arm to having some muscle tone. And to us that means everything.

Anyway, one of her therapists wanted to know 'unofficially' if the amount of therapy increases/decreases success. Or if there are any studies already out there?

Thanks in advance.

[njbirk]

Brenda,
Just a suggestion that you might want to post this query on the general board. The adults with obpi here did not have the opportunity to have primary surgery because they weren't doing this surgery when we were born, in my case, over 49 years ago.

I can tell you that therapy is life long no matter what the extent of the injury. That does not mean that it has to be formal pt/ot, because we can learn the exercises and routines and do them on our own. It is good for us all to do some formal therapy on a regular basis with a pt/ot as we see and experience any change as we age however.

Most of us have found that aquatherapy is the most beneficial long term.

Nancy

[Karen Hillyer]

Hi Brenda, I live in the UK, but I am happy to try and answer your question. My son Gavin was 6 months old when he had a nerve graft surgery (I think this is the one you call primary surgery in the states) Over here, with our National Health Service system, you would only get to see a therapist about twice per month, post operatively. Most of the ROM exercises would be carried out by the parents at home, unsupervised.
Gavin gained some muscle tone post op, but we didn't really see any functional difference until 13 months post op, when he started to bend his elbow.
Certainly the children I know in our group, who have had nerve grafts followed up with regular therapy, either by therapist or parents have had very good results, I don't know if therapy helps the nerves to regenerate better, but it certainly helps the muscles to remain active and have a good tone, which means that once the graft has "taken" the baby is in a much better position to have a useful functioning arm.
I don't know if this really answers your question, but I wish you and your little cherub all the success in the world.
Karen

[m&mmom]

Matthew had primary surgery when he was 6.5 months old. After surgery he had pt twice a week, ot once a week, and acupuncture once a week. In February we dropped acupuncture and he goes to a chiropractor that also does Reiki energy, which I took a class in to do also. He just had mod quad and we will be resuming the same therapy schedule when he's out of the splint.
Hope this helps,
Cindy

[francine]

Post surgical therapy is very important. However the child's psyche and emotional status is important, too and so we cannot overload a child with more than they can handle. The good thing about a great therapist is that she/he will teach the parent what they can do at home as followup so that you can continue the 'work' at home.

Things change as the child grows older and things start to come in... and then there are growth spurts and muscle imbalances. I think that therapy early on is very important as well as evaluations by a bpi specialist to keep on top of things. But do whatever you can to protect your child from burnout. (which may mean taking breaks and switching therapists every so often, etc.)

Also - therapy can mean doing other classes like gymboree or little gym or kindermusik or swimming...or playing in the bathtub

Pr.Gilbert on his site www.obstetricalpalsy.net has a page about therapy that you may be interested in reading. And there is a good page in the awareness section in resources written by margaret Storment about therapy. Also - read Pr. Gilbert's article on a Lifetime of Care in the current Outreach. If you did not get one contact Nancy Birk at nancy@ubpn.org.

[admin]

From what I know therapy is extremely important and the more the better. Our child goes 3 times a week also, and we plan to start aqua therapy. Dr. Waters in Boston is a very experienced doctor who is involved in ongoing research and has studied cases from Boston Children's Hospital from 50 yrs. ago. He STRONGLY believes in the value of therapy and told us that he often see's a clear correlation between a childs recovery and the amount of therapy (professional), as well as what the parents do at home. He said often it is the parents that consider themselves obsessive about therapy that have children that often show the most progress over the years. A big commitment and responsibility for us parents, but hopefully worth all our efforts!

[admin]

P.S. I should clarify that hopefully the therapy is being done properly while stabilizing scapula, gentle ROM, stretching the right areas, therapy with minimal compensation, etc. Some say I don't think you can really harm the child, but I don't think that is totally true. Dr. Waters also talked about the importance for our child to focus on specific stretching which he instructed this on, ask doc which areas tight and how to best stretch.

[Brenda]

Sorry it took me so long to reply, I was rearranging furniture and the computer was unplugged.

THANK YOU for all your input. I very much appreciate it all.