spontaneous recovery?

[admin]

my daughter, who will be eight weeks old tomorrow brought her hand to her mouth yesterday for the first time! of course i was excited to the point of tears! b/c the past eight weeks have been so trying and difficult i am hesitant to get too excited b/c i dont know a lot about bpi. since yesterday, she has done a lot of elbow bending and bringing her hand to her mouth while she sleeps and when she first wakes up.. she still presents with the "waiter's tip."
i guess my question is, whats next? is surgery no longer needed? is there a chance of regression? is this as good as it will get or will she continue to get better? thanx in advance for your help!

[JessicasMom]

Diane,

My daughter will be 5 months old this week. She too brought her hand to her mouth a little past 2 months old. I don't know what the future will hold for her as far as surgery goes, but I have been told by Dr. Nath (and it is supposedly a commonly held belief) that 95% of the kids who show any weakness by 3 months old will still have some deficits that will most likely require secondary surgery.

Right now my Jessica is doing great. She can do everything with her left arm. The only thing she can't do right now is supinate (palm up). I guess time will tell for our kids.

The good news is that if your baby is getting hand to mouth that means she won't need the primary surgery which is for nerves and that is a miracle to be truly grateful for! We cried when Jessica did this!

Michelle

[Francine_Litz]

Diane - this is just great news and I know you are so excited but I have a question..... you mention that your daughter's wrist is having the waiter's tip issue. How are her fingers? Are they functional? I am asking because even though she has hand to mouth, if the wrist/fingers have issues this is something that should be looked at by a bpi specialist asap.

Usually babies are splinted at night when they have a waiter's tip and it will usually resolve itself... do you have an OT you can go to that will make/get her a wrist splint?

Diane - where do you live? do you already have a bpi specialist who can evaluate her?

-francine

[admin]

I'm so glad your baby is progressing- every bit of spontaneous recovery will make the overall outcome better. I just want to caution you though to have your child monitored by a true brachial plexus specialist over the entire childhood and teenage years - there can be small residual problems that can create new problems - in our case my son was getting quite a bit of spontaneous recovery and at about 3 months our nuerologist the head of pediatric nuerology at the children's hospital in my province dismissed us as patients saying that there is nothing to be done for my son - no physio, nothing just take him home and treat him like a normal baby - well today twelve years later Richard should have had lots of therapy to help the brain "Wire" that injured arm in -sensory therapy- as well as normal physio type therapy rom and strength - somewhere in his early years someone should have alerted us to the issue of shoulder joint problems - his shoulder became malformed and dislocated - the nuerologist predicted full recovery with possibly some residual weakness in the deltoid that might make it hard for him to throw a baseball hard overhand -make sure your child is followed by someone who really knows the ins and outs of bpi because some things need to fixed within certain time frames or its too late for medical intervention and your choices become limited with more limited outcomes. I really think joe average dr. and physio just don't know enough about this to give the right advice - get to someone that knows and has a good reputation - check out the medical resources page - not to scare you - some kids like my third child - do completely recover- but just make sure you are not missing anything that you may not be aware of like we did with my first child.

[JanAmes]

I think we read somewhere that "spontaneous recovery" would be possible if the baby had movement by 4 weeks.
My daughter Sarah is now 20 months old. She had her first elbow movement at 8 weeks. She had movement in her fingers and partial thumb at birth. We never saw the waiter's tip posture, but when she got her elbow movement, she frequently had the back of her hand to her mouth position.
She used a "Joe cool" splint at 8 weeks, then a supination splint to help turn her hand palm up for a few months, then a fixed splint on her elbow to work out an elbow muscle contracture - all from Texas Children's Brachial Plexus Center.
Up until a few months ago, her resting posture for her arm was a "birdie wing" where she couldn't bring her arm down to her side due to the muscle imbalances. She had muscle contracture in her shoulder (due to muscle imbalances) and her elbow. The shoulder contracture released just before she was scheduled to have the modquad surgery so the surgery was cancelled. We have been using TES to help strengthen the muscles. We used a dynasplint to work on her elbow contracture, it has gone from a 30 degree to 15 degree.

She's made great progress with the therapy she's had. She can reach above her head now - you probably won't understand how exciting that is until she's a little older and you see how hard it is. She can't reach very far behind and she can't supinate as much or as quickly with her bpi hand as her other hand. She is sill weak in that arm and she knows it. She compensates by using the other hand more, & we have to work on getting her to use her bpi hand to try & get her body in balance, as I am aware overall body imbalance can lead to learning disabilities later.

Just wanted to give you a snapshot of where things can go even for the less severe cases of bpi. It took a long time for it to sink in to me that this is a lifetime injury. You should see a bpi specialist for evaluation and go back periodically to monitor progress. Get set up with physical therapy (mostly range of motion for you right now) & keep monitoring this message board, you'll get a lot of information on what to look for and what treatments can help. Find out if your state has an Early Childhood Intervention program - if so, your child should qualify for physical therapy and the cost should be minimal.

Good luck.

[admin]

Also just wanted to advise you to make sure whoever is doing therapy with you is making sure the sensory is stimulated as this can cause alot of problems later if the brain's connection to the hand is not good and solid - especially in school stuff.

[Francine_Litz]

Jan - wow! Thanks for sharing that with us. Double WOW! I guess I'm wow'ing the contractures releasing and not needing surgery! That's great!!!
-francine

[tcon]

my 16mo daughter had hand to mouth at 8 weeks also. she had hand use and could shrug her shoulder at birth. She has continued to improve to this day. She can get her arm above shoulder, can touch the back of her head and neck. She has done everything developmentally on time..roll over, sit up, crawl, walk ect. In fact, 90% of people who see her dont know there is anything wrong (her pediatrician cant tell which arm is affected). She is fully functional. With that said, I know she will always need therapy and need to be followed by a bpi specialist. She may need surgery down the road but we are thankful for her recovery so far. Although I wanted to believe the countless (non-bpi experienced) drs & Therapists who told use she would be fine, I knew in my heart bpi would not go away for us and therapy will be part of our lives. Good Luck.

[JessicasMom]

Jan,

Your daughter's early recovery sounds like mine. Jessica is almost 5 months old, had hand and wrist at birth, and was able to bring her hand to mouth a little after 8 weeks. Now she is bringing her hand to her mouth consistently with the back of her hand, and she does get her arm over her head when she stretches or sleeps.

My question for you is this -- when did your daughter develop the contractures? I'm really happy to hear that she was able to avoid surgery. I'm hopeful for no surgery as well, but I don't know when the imbalances or contractures could occur? Right now, although she is weaker in that arm, it is hard to tell which arm is affected (unless she brings her hand to her mouth).

I know that no two childen will have the same recovery, but I'm just trying to get an overall idea of what the future may hold for her.

Thanks,
Michelle

[JanAmes]

Michelle,
Our visits to TCH were when she was 2 months, then 4 months, 6 months where they first told us about the contractures, then at 10 months they told us to schedule the surgery and she was put on the schedule for 2 months later. I was very frustrated with being told to just stretch her as she was starting to resist. I slept with her and placed her on her bpi side with her arm straight up with her own body weight on it to help stretch her out during the night. I can't even tell you how to recognize the shoulder contracture; it seemed a little stiffer than her other shoulder and she had a lot of winging in her scapula (when you looked at her back, the muscles that hold the scapula down were too week to keep it from sticking out). I couldn't tell that the shoulder contracture was "resolved" - I was told that when they cancelled her surgery. Dr. Nath told me that they don't do anything surgically about elbow contractures until they are 3 yrs old. I was told to follow up with TCH by video tape in 6 months. The elbow contracture is visable - she can't straighten her arm. I can feel her bicep is a tight ball (it is improving) & can loosen it with myofacial pressure. She is really fighting me with any work on it now & objects when anyone touches her arm. The dynasplint she used didn't fit at first & we had to put a lot extra padding on it and I had to use rubberbands to attach/hold an extra strap at the wrist to get the proper stretch. She wore it at night, I put it on after she fell asleep.

Sarah has always looked "normal" to anyone who didn't know what to look for. She's ROBPI. She uses her bpi hand to feed herself (she's actually started switching more lately which is good). She doesn't have the scapular winging, but her shoulder is slightly dropped compared to the other one- she does have a shoulder deformity (I felt prompted to check it out after seeing images Francine posted) but the pediatric orthapedic surgeon I took her to did not reccomend any corrective surgery. She can reach over her head, we used cute jaw hair clips to get her to reach up & take them out of her hair which was a great tool to tell improvement when she could reach further over. She would "walk" her hand over her head to reach them. Her elbow contracture limits this movement as well as reaching behind. Therapy has gotten harder in some ways & easier in others as she gets older. I haven't been on the board in a couple of months due to personal issues, but I have fould it very informative. I would advise anyone with BPI reguardless of the severity to keep reading because you learn so much here. Please feel free to email me if you have any other questions.

If you can, discourage Jessica from doing the "sitting crawl" thing. Weight bearing is important & they need to be on hands & knees to develop proper hand-eye coordination - even commando crawling (on the belly) is better than sitting up & using the legs to get around. Sarah started doing it, & I would get above her on my hands & knees to keep her from sitting up & we would crawl around together. She thought it was funny