United Brachial Plexus Network, Inc.

This is our first time to the site. We were just referred moments ago by another family going threw this. By the way this is dad typing this time. First to give a short history then I will start on the questions. My daughter Sariah was born about 2 and a half years ago here in north Texas. We have 3 other children so we didn't expect any issues with this one. Our last child before Sariah was a 10 lb boy though so throughout pregnancy we kept an eye on babies weight. On the day of her birth, that morning we had a sonigram done to make the call if it would be a regular birth or c-section. Doctor agreed anywhere near 10 lb and c-section would be the way to go. After the sonigram gets read we get told no problem she is between 8-9 lbs lets do this (her water had already broken)To condense this we had a long day and about 7 hrs later and through a very tramatic a terrible birth we had a 12 lb 6.5 oz girl with a left arm that didn't work. Again, to keep this short basically we were told it was erbs palsey and most of the time it heals itself, follow up with your pediatrician and thanks. So basically that is what we did. We saw our doctor, we saw other doctors, we called doctors and most of them really didn't seem interested. Her arm hadn't gotten better and we were approaching her first birthday. My searching for somebody seemed to keep hitting walls. Her left shoulder grew dislocated (I have dislocated mine several times so I knew this) again in speaking with lots of hospitals all over the country the standard response was we dont put babies under two under under anesthesia so we can't do a cat scan/mri wait till then. My frustration deepened and I finally came across Scottish Rites hospital. I called them with all of my questions and finally started getting some answers. I got my doctor to get us a referral to the hospital and since have had 1 major surgery (which was a miricale) and then having to have the shoulder reset and casted a second time. Previous to the surgery her arm was dead. She had some finger movement but it was limited. Her arm also hung in the pulsey fashion partially turned internally. After the surgery and the 6 weeks in the cast we returned to see how it all turned out. Within minutes of the cast coming off she touched her face and her hair with her left hand for the first time. I really think it was the happiest day of our lives. It was shortlived however, to this day I am not sure what happened but about a week later while playing with her 3 older siblings she did something to lose all that we had gained. In that short time she had about 90% use of her arm. All of a sudden we were back to just moving the hand and that is about it. We returned to the hospital hopeful and her shoulder was reset and she was recasted for another 6 weeks. The second time was not as great as the first. She came out really stiff and had only about 35-40% use of her arm. Since that time we have been working with her non-stop as well as her therapists and she is now around 65-70% function. I thank God everyday for this as it was a dead limb prior to the visit to Scottish Rites. At this time we are returning to them agin for a recheck and to address her shoulder blade winging out. I bet that is not the correct term but you get the idea.

Okay, now starts the questions. Please remember any help on any of these is greatly appreceited. It has now been over 2 years since she was born. At the time of her birth we were just glad she lived (she was stuck 3 1/2 minutes) and didn't think there was anything we could do. However at this point knowing there was a lot that could of been done and knowing how many mistakes were made is there a limit on the time for malpractice? Second, what is the best exercise for Sariah to help hold that shoulder blade in? Third what is the best exercise to help strengthen her shoulder as a hole? She is a VERY active 2 year old and loves to jump on the trampoline and hang off the side and give mommy heart attacks. Is there any other advice you would give us to help us in dealing with this for the rest of her life. Finally thank you to all of you who have anything to do with this site. I had never heard about it until tonight and I bet i wont get much sleep going through the rest of it. I wish we would of found it sooner.

Sariah's parents,
It is great that you found us here, so sorry that you have to but at least now you might be able to get advice. Sorry i cant shed much light on what the best exercises are for a 2 year old. Hope some one else can help you with that. I am 18 years old and was injured at birth. So far advice to you as a parent: Just dont hold Sariah back! It seems like you are not doing that from the trampoline statement. Thats awesome! I also loved the trampoline although haveing a nurse as a mom didnt allow my family to have one. But we always had friends that did. The rebel in me come out.

Letting her hang from things is great for her shoulder strength but you may want to watch that is she is still having dislocation issues. I would reccommend asking her doctor about that one, or at least a therapist.

So far it sounds like you are doing amazing with your little girl! Keep up the hard work.
Hugs,
Amy 18 ROBPI from MN

(if you want to read more about me I have set up a website that has my story and a current journal, even a few pictures. The website is: www.freewebs.com/bpimn
Also every Thursday at 8:30 CST 9:30 EST there is an open bpi chat, feel free to join us and get some questions answered.)

Thank you, I really don't believe there is anyway to hold back this child. By far she is the most strong willed of all 4 of our children. (Most of the time she is the boss of the 11,9, and 6 year old.) She also is A LOT more active than any of our other children, and more destructive too. She doesn't realize she is any different and she wont let anyone outdo her. Sometimes it is heartwrenching to see her climbing at the playground but there really is no way to stop her. She also has no sense of fear (which we have plenty of for her), she is quick to try everything. We are very blessed to have her as a child, we are just looking for wayst o make her life easier for her as she grows. We are planning a move to the "country" still about 2 years out but buying property now. I am going to make sure we have strong fences around the place to keep her in when we move : )......

Hello !! Glad you found us and dont be discouraged about the responses you will get plenty.

You are sitting on a goldmine of info down in texas. You have a support group in I believe Dallas/Ft. Worth area. Cheri knows about that. First I want to caution you on what you say if you are planning on going the lawsuit route.

I am in Missouri and our statue of limits on malpractice is 2 yrs. Not sure about ZTexas but just google a search and you will find out.

I believe you should get a therapist as soon as you can that is familiar with brachial plexus. You need to get some professional help with that to see exactly what she needs help with.

As for Mri and that stuff oh my you have Scottish Rite, Dr.Shenaq in houston, Dr. Nath in houston. Dr.Nath has a great website full of info. It is quite detailed. However Shenaq has a site but I dont think it is done yet.

Also please go to the resource section of this website there is alot of useful info there. As well as a site called Injurednewborn.com.

You need to speak to a bpi Doc about strengthing her shoulder . since she has had surgeries already. You do have some good ones there . Make sure you get more than 1 opinion.

Well hope some of this helps.

the site for dallas is www.dfwbpi.com its a good one!

Thank you for the info we are very thankful. As far as the lawsuit goes, we are just exploring our options. Also note the "country" I was speaking of is in the Ava Mo. area. We are looking forward to the "farm" time which translates to family time.

There is a fantastic PT in Ft. Worth--Kathy Fincher with Pediatric Therapy Associates of Ft. Worth. She has tons of BPI experience and has worked with several of the most notable BPI docs in the country. We travel over 400 miles every few months just to see her then I handle all of Natalie's day-to-day PT at home. You also might want to check out Dr. Karen Pape's site www.tascnetwork.net. I have seen huge improvement since putting Natalie under her care. Don't be discouraged about finding all this info this late in the game--it's never to late to get your child the care she requires or to get yourself the help you need.

Thank you, we will look into the Ft Worth PT. Sariah has therapy once a week and we of course work with her always. We are not discouraged in anyway as a matter of fact we are very grateful for finding all this furhter information.

I'm so sorry for what you are all going through. I am attaching a copy of a message that I recently posted regarding Paul St. John, a Neuromuscular Therapist who cured my daughter of 4 1/2 years of chronic pain and two unncessary surgeries. I have spoken to Paul regarding posts that I have read on this board and he told me that he has successfully treated many cases of BPI resulting from birth complications.

Please e-mail me at soyasolutions@yahoo.com or call me at 239 898-8505 if you have any questions as Paul St. John is truly a miracle worker.

Following is my original post. Good luck to you.

Susan Frey




My Daughter is Pain Free--Paul St. John, Neuromuscular Therapist susanfrey Posted: Dec 16, 2005 12:52 AM Reply

My 17 year old daughter is in the process of receiving treatments from Paul St. John, the pioneer of St. John Neuromuscular Therapy. She is nearing the end of her treatments and is "just about PAIN FREE " because of this man who is truly a miracle worker.

After being in chronic pain for over four years which started (in her scapula area) shortly after shoulder surgery in March of 2001 to repair a torn labrum (she was a competitive swimmer), she now has her life back again. When I say that she has her life back again, that is really an understatement. I have my happy, optimistic, positive, loving daughter back again, and Paul St. John is THE reason for that. She had bouts of scapular winging and shoulder pain for over four years and this past summer, the pain got rapidly and progressively worse--she was in pain from her neck down to her quadricep and spent most of her time in bed.

We have been to THE top orthopedists and neurologists in the Baltimore and Tampa Bay areas and have had diagnoses ranging from "there is nothing wrong with her" to incredibly, "she is in the process of developing Muscular Dystrophy". A few doctors recommended a muscle transfer and one a scapular fusion. As their diagnoses and explanations just didn't make sense to me, I looked for alternatives as there was no way that I would let someone do an invasive surgery on my daughter when I didn't have any confidence in what they were saying.

I took her to Paul St. John in St. Petersburg, Florida for a consultation in early October and he determined that, at one time she had a tear to her Leveator Scapula Muscle (we've pretty much determined that it was due to the surgeon tearing that muscle in March of 2001) which triggered a chain reaction from her shoulder girdle down to her quadricep with muscles strangling nerves.

As soon as Paul examined her, he assured me that he could "fix her" and told me that he has cured countless numbers of people with Scapular Winging, BPI-Erbs Palsy, Peripheral Neuropathy and all types of Neuropathies. He has an international clientele; people fly in from all over the world to receive treatment from him.

A friend of mine who is a doctor, highly endorsed Paul and went to him as he lost faith in orthopedists. He's a trauma surgeon and went to Paul because of chronic knee pain. He was a former football player at the University of Oklahoma where he sustained injuries to his knees and was told by several orthopedists that he needed a double knee replacement. He went to see Paul and was cured of his pain within two months.


There are really no words to describe how wonderful he is. We went to a multitude of doctors who didn't care about my daughter's pain and who wanted to immediately dismiss me when I asked questions and then followed up with more questions when their responses didn't make any sense. In the instant that I met Paul, I knew he was different and just knew that he could help my daughter. Not only is he sympathetic to Heather, he is empathetic as well. He was in three major accidents (you can read his story on his website), one in which he was shot out of a helicopter in Vietnam (he was a Green Beret medic) and suffered for years with chronic pain. He then started to resarch the relationship between muscles, soft tissues and nerves (orthopedists only work with bones and nerves)and taught someone how to treat him. As a result, he is pain free.

His website address is www.stjohn-clarkptc.com and the phone number is 727 347-4325. Fortunately for me, St. Pete is just a two hour drive so geography is not an issue; however, after seeing what he has done for my daughter and others, I would fly to the moon to see him. I've discussed this message board with him and he advised me that, for the majority of you who are out-of-towners, he would suggest that if at all possible, to make an appointment to see him in St. Pete as he is an excellent diagnostician and could best determine a treatment plan. If you are unable to continue to see him for treatment in St. Pete, he would then refer you to a St. John-trained therapist in your area and would personally call that therapist and advise how to treat your condition.

If you would like to e-mail me, my address is soyasolutions@yahoo.com. I would be more than happy to talk to you as well as our lives have changed so much because of this man. I've seen what pain has done to my daughter and would do anything that I can to help anyone out there.

Susan

We live in the St. Louis, MO area and this spring we are moving to the "country" also,
Ava MO is a beautiful area, and Just wanted to let you know that there is a great BPI clinic at Kansas City childrens hospital, they are listed on the resources page, Dr, Anderson, the orthopedic surgeon, and Dr. Rhinaldi, rehab doc, are absolutley wonderful.
There are alot of exercises that can help with shoulder strenghtening, but because she has had surgery, then something happened to stop progress, I would not want to give ideas that could ultimately hurt her. A qualified OT or PT could give some Ideas for you, when they know exactly what surgery was done, and what happened to hinder her progress.
Hanging from the monkey bars, and jumping an trampolines are hot topics around here, some say it is fine, some (like me) cringe.....hanging can cause dislocation of the shoulder.....like I said, it's a controversial topic (not trying to start anything here)
As far as malpractice, here in MO there is a 2 yr limit to file for yourself and the child has til they are 18 (+ 2yrs).....but that is here, I'm not sure about your state.

Jeni