Desperate father - PLEASE help.

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
ConcernedDad
Posts: 7
Joined: Fri Oct 10, 2014 10:29 am
Injury Description, Date, extent, surgical intervention etc: Not officially diagnosed

Desperate father - PLEASE help.

Post by ConcernedDad » Sun Oct 12, 2014 1:41 am

Hello everyone,

I have been reading many posts on here for nearly 2 years and they have been very helpful. I just want to say that I wish you all the best and hope that you find help, comfort, and the best recovery possible for your children. This is my first time actually posting. I'm writing because I am desperate for some help/advice. If you wouldn't mind reading our story below, and you feel like you might be able to help... I would greatly appreciate a response. Thank you all very much in advance.

My daughter was born nearly two years ago with hip dysplasia. She was frank breech in-utero and we were told the hip dysplasia was a result of her in-utero positioning. About three weeks after she was born we noticed a large hardened lump on the right side of her neck and her head was always tilted to that side. She was quickly diagnosed with torticollis (a tight muscle on one side of her neck that forced her head into a tilted position) and again, it was attributed to her positioning in-utero. We were instructed to stretch her neck by turning her head to the right and also touching her left ear to her left shoulder. A few weeks after conducting these stretches, we started to notice that her right arm did not move as much as her left. There seemed to be some limited range of motion. We were told that was a result of the torticollis and we were informed that chiropractic care might be able to help. She was seen by a chiropractor who told us that he probably could help because he has worked with very young children in the past who have also had torticollis. There was no high intensity adjustments or anything like that, just some what appeared to be gentle massage like movements on the back of her neck. The lack of movement didn't seem to improve and almost seemed to even get worse. I became panicked and we took her to many doctors over the next year or so. She has been seen by neurologists, physiatrists, and two brachial plexus specialists. What makes it even more difficult is that we were provided with mixed diagnoses from these various doctors. Finally, just a few months ago she was diagnosed with a probable mild nerve injury to her right brachial plexus. She has very good function in her right arm... we just notice that she has what appears to be slightly less tone in her bicep and shoulder in that arm, and that, when at rest, she seems to externally rotate her left arm more than her right (although she can externally rotate her right arm actively to reach for something that is behind her and to the right). We were given the option of giving her an MRI, however, in the two most recent visits to the two neurologists that we have seen, both of them told us that the MRI would only serve to provide us with specific information about what might be going on, but it would not change anything we would do in the way of treating her. My wife and I decided to follow that advice, and, at the time being, not go through with the MRI (we are just a little nervous about sedating her at her age, especially if the doctors don't think it is necessary).

Although she has good function now, my biggest concern is the possibility of future problems. I do notice that her right shoulder and upper arm seem to be a little less dense (less muscle mass?) than her left arm and shoulder.

My questions are as follows:
1. Would exercises help to strengthen her muscles and if so, are there any specific exercises or treatments that might be able to strengthen the muscles that allow you to externally rotate your arm and flex your biceps?
2. Do children who sustain a BPI ever regress and if so, at what point should it become concerning? (I ask because we've been told by many doctors not to be concerned, although for me, as her dad, it is very concerning).
3. Who/where might I go to for expert consulation/advice? She's been seen by two specialists and I've contacted a third and had brief exchanges but unfortunately have not received further responses. (I ask this because one of the most difficult things about all this has been the feeling that I just can't find the right person/people to take her to that I feel can help her. It's just been a long road that has left us more confused than relieved).
4. Is there anything else we should know?
5. Are there any other questions I should be asking?

Again, than you all so much for all of your help. I've taken this very hard, but I know that there are parents and children out there who are struggling more than we are. Your strength and resolve provides me with so much encouragement, you don't realize how helpful its been.

Thank you so much!

ConcernedDad

Master DIVER TOM
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: Desperate father - PLEASE help.

Post by Master DIVER TOM » Tue Oct 14, 2014 7:44 pm

First you and your daughter are Doing Great-!! ;)
In the 50s my mom took me all over to find help for my birth erbs I was left without surgery or treatment at 10 the doctor told my mom there was no help for me :evil: :twisted:
But I like many here posting find there way to adapt :shock: in are own way ;)
What is Amazing ,how we get by with or without treatment.
I will try to give you help and peace ?? :shock: :roll:
The best thing to in-prove is grasp , I have used a small rubber ball to squeeze for grasp and to stretch the fingers. If you have grasp you can help reaching with holding with the good arm and help the limited arm to reach and put it ware you can grasp and hold on like a bike , this way :shock:
Encourage your daughter to find her way to use what she can with her limitation she left with to adapt the best why she can. The best therapy , is in playing and in sports.
If she get stop by her limitation then try the next surgery to help her to overcome more if a surgery really will help her to overcome more. :roll: I have never understood what surgeries need to be done right away and when you can wait??? :roll: Seems like being in a panic attack in trying :roll:
I drove a semi with birth erbs and a broken scapula and elbow and I drove a motorcycle to.
I never ever loss the little use I had , by using the limitation in trying and doing the limitation do and will straighten, it a over time thing , You see the same in what I and other post here. to ;) :D
If you and your daughter can go to camp sometime , You really get a felling of, I am not alone :shock: Big Time ;) :D
I hope this might help, :roll: :shock:
Tom

marymom
Posts: 692
Joined: Mon Nov 05, 2001 5:05 pm
Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
Location: Fort Pierce, FL

Re: Desperate father - PLEASE help.

Post by marymom » Thu Oct 16, 2014 7:02 pm

Try contacting a physical therapist for specific exercises to help her. Was she born by cesarean? Just curious.

ConcernedDad
Posts: 7
Joined: Fri Oct 10, 2014 10:29 am
Injury Description, Date, extent, surgical intervention etc: Not officially diagnosed

Re: Desperate father - PLEASE help.

Post by ConcernedDad » Fri Oct 17, 2014 2:09 am

Driver Tom... thank you so much for the reply. I really appreciate all that. My biggest concern is that there is some progressive aspect to all of this. I just don't want to see it get any worse, and, if it can happen, I want to do everything in my power now to avoid or at least minimize that.

Marymom, she actually was born by cesarean. She's seen a few different physical therapists who have all been pretty helpful. Sometimes I feel sick to my stomach only because I believe in my heart that some of what we were told to do early on to help her torticollis may actually have inadvertently contributed to making a potential BPI worse. It was just that she was not diagnosed with BPI (and the diagnosis is still even a little unclear to this day).

It's been a long, stressful journey, but I'll do whatever I can to help her as long as we are on it :-)

jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Desperate father - PLEASE help.

Post by jmar » Fri Oct 17, 2014 4:57 pm

the number one thing that will help her with her functioning Is water exercises. if you have access to a pool that would be one of the best things you can do for her is to teach her to swim and do water therapy. it wont be a cure all but it help tremendously. I have a traumatic injury but it is the same injury...just happened later in life. if I go a few weeks without doing my water exercises I can tell a huge difference in my strength and range of motion. one thing I do to help with my shoulder is throw a ball then swim to where I can almost reach it then I stretch to get it. I also throw it over my shoulder. also a noodle to push under the water with both hands put it over my head and let the water drain. that would be fun for her to do and don't have to be mentioned that it is "therapy". if everyone else set the example and did it with her. a great family time together and therapy at the same time.

Master DIVER TOM
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: Desperate father - PLEASE help.

Post by Master DIVER TOM » Sat Oct 18, 2014 10:07 am

There is no crystal ball in outcomes it is :twisted: :evil: Period.
The worst day in my life was when the doctor told my mom , there was no help for me at 10 ,with birth erbs :shock: The apposite fact no matter when these injuries happens,
What limited us also empower us to try,

The act of god comes in trying, For me driving a semi and 25 years driving safely and being a Master Diver being call Nemo is all good, If you Ok with water get in it , Water will help these limitation , How, By floating you can get some the pain out from gravity :shock: If you can float then learning to snorkel and looking at fish on a reef maybe in your future :shock: :D
We are Gluttons to try, Far to many post a Smiles in trying than the despair and depression of Giving up not trying,
It Tough being us, We will never give up in trying , That would be all of us and lurers to ;) :D
We get past our limitation by trying direction comes by our post ;) :D Sometimes :shock:
Focus more in life on what did work by our trys than the others things that did not work out :shock:
Jmar, is 110 present Right :shock:
The best therapy is in play no matter what it is, I go with water for help to , but that came from my Nemo side :D :shock: ;)

Just Thinks :shock:
Tom

marymom
Posts: 692
Joined: Mon Nov 05, 2001 5:05 pm
Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
Location: Fort Pierce, FL

Re: Desperate father - PLEASE help.

Post by marymom » Sat Oct 18, 2014 2:43 pm

Water and play YES! As parents we are constantly looking back wondering, assessing, judging. Take what is helpful and move on- Best of luck, your child is lucky to have parents who are working hard for her/his recovery.
~Mary

Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Desperate father - PLEASE help.

Post by Carolyn J » Sun Oct 19, 2014 12:11 pm

WARM WATER POOLS ONLY,remember.... 8-)
(((((((HUGS))))),
"bossy" gramma Carolyn J
LOBPI/76

jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Desperate father - PLEASE help.

Post by jmar » Sun Oct 19, 2014 12:37 pm

Warm water pools are better. But sometimes that is not available. Cool water is better than nothing. Also it is a proven fact that water exercise is the best therapy.

ConcernedDad
Posts: 7
Joined: Fri Oct 10, 2014 10:29 am
Injury Description, Date, extent, surgical intervention etc: Not officially diagnosed

Re: Desperate father - PLEASE help.

Post by ConcernedDad » Sat Oct 25, 2014 6:54 pm

Thanks to all of you who have posted. Obviously it is a difficult situation. However, the uncertainty of everything makes it even more difficult. We don't even have a solid diagnosis (although a couple doctors are convinced its a mild brachial plexus injury).

I suppose a follow up question is... just generally speaking, what can we expect as new parents with a child who has a OBPI? Does the injury get worse over time? Do new problems arise as a result? Can her current level of function be any kind of a predictor as to what we can expect when she is older? Is it or can it become painful for her. I suppose it's just difficult not having those answers I suppose.

She did have swim lessons, but she is so young, it was mainly just acclimating her to the water. Do you guys have any specific exercises that you would recommend in the water? I do have access to a community pool once a week, so I will certainly try to get her back into the pool.

One thing that has been somewhat concerning is the fact that I feel like I am noticing her arm development just not keeping up with her other arm (in terms of muscle mass and otherwise). Is there anything we can do to help that as much as possible?

Thanks again everyone. I sincerely appreciate having this forum that I can come to for help... and I hope as time goes on, I can offer some help to all of you in some way.

Sincerely,

ConcernedDad

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