New TBPI

[babyryd]

Hi, my 7 year old son was recently injured in a motocross accident and we are just beginning to learn the severity of his injury and trying to cope with all that lies ahead. He has no sensation or motion in his left arm/hand and has horners syndrome and is just beginning to experience the pain I've been reading about. Because of his young age, I'm having a difficult time finding similar situations and feeling overwhelmed. Any suggestions where to go from here as we begin this journey?

[Karl w/ a K]

Hi d,
Where do you live? Is your son seeing a tbpi specialist? What tests have been done so far? Sounds like a pop quiz doesn't it? That was the last question. Because of his age, you might put Dr. Nath on your short list of who to see. I think he treats children as well as adults. But don't quote me on that one. Let's see if we can get other people who have been been treated by him to help me out. What do you say guys, need a little help here. In the mean time, take a deep breath (inhale, come on). Okay, exhale. I don't know why, but it helps. Now sit tight, and more answers will come...Karl...

[cbe411]

Lourdes,

I am sorry to hear about your sons injury but you have come to the right place. There are many people around here who are willing to offer advice where they can.

I would advise you to get your son to BPI specialist asap. You can look here http://ubpn.org/medicalresources/ Doctors are listed by country. If you are in the states I would check out Dr. Nath, he works with obstetrical and traumatic brachial plexus injuries in children and adults. Also you might want to check they Mayo clinic in Minnesota. There are many great pediartic docotors out there but I am not sure how many work on traumatic chilren or even if that makes a difference. I will post you message on the general board too. There you will find more parents who might be able to help too! Feel free to ask any and all questions!!! Good luck!

COurt xx

[admin]

Hi, I have a young son also, age 12 that had an accident on his atv resulting in a right brachail plexus injury. Im glad you found this site, its full of information and the people here are really great to help. Where are you from? My e mail is softballmom09@hotmail.com if youd like to chat.

[admin]

Thank you for your encouragement. Because we are so new to this (accident 3/6) we feel very alone. We are thankful to have found you all. Our son, Chase, is 7 and we live in Pleasanton, CA. We are going to be seeing Dr Hunh @ Lucille Packard Childrens Stanford on Mon, and Dr Betts @ Childrens Hosp Oakland on Tues and are encouraged by "John's story @ Mayo". We have two younger children (Haley 5, Cole 3) and are willing to travel anywhere to find the best care for Chase. Would love to continue to here from you all and learn about your stories.

[babyryd]

Thank you all for your encouragement. We are thankful to have found this site and support. Because we are so new to this(accident 3/6)we are still in a state of shock. As I mentioned earlier, my son Chase, is 7 and we live in Pleasanton, CA. We will be seeing Dr Hunh @ Lucille Packard Stanford (which is listed as one of the BPI treatment ctrs)on Mon and Dr Betts @ Childrens Hosp Oakland on Tues. We are currently trying to manage his discomfort with 200mg neurontin, 300mg ibuprofen and acetominophen/cod daily. We have two younger children (Haley 5 & Cole 3)and are willing to travel anywhere to get Chase the best available treatment. We look forward to hearing from you and learning more about your stories. Thanks so much!

[jennyb]

Hi and welcome-so sorry to read about your son's injury. There are a couple of long term tbpi here who got their injury as children, hopefully they will see your post and respond.
You're doing the right thing seeing a specialist as soon as possible. I haven't read the profiles of the doctors you're seeing, it would be worth checking with them how many trauma injuries they deal with. In tbpi it's important that the team you see has a main interest of trauma injuries (rather than a main interest in birth injuries) because the injuries themselves and the treatment protocols are very different, plus the pain gives the tbpi a whole other dimension. Results are very long term in these injuries, results from initial treatment can take 2 years or more to show up, as one previous poster has said. Find a team you ae comfortable with and who offer very regular progress checks. A pain clinic attached to the unit can be a great help too. The Mayo clinic probably have the most experience with serious tbpi injuries and advanced treatment of them in the US, but would be quite a way for you to travel.

I hope your child's injury isn't too bad and I'm sorry to hear he's in so much pain. Please let us know how you go on.
If you want to mail me please click on my name.
Jen NZ

[babyryd]

Hi Karl, thanks for your enthusiasm at a time when I have none - You all are a breath of fresh air. I was feeling lonely and hopeless and you've offered me hope and a sense of community. I'm ready to do whatever it takes to get chase the best care possible. We live in Pleasanton, CA but have a spacious motorhome and are willing to pack our family and go...

[admin]

Hi, Im also new to this, my 14 year old daughter had her accident on 1/14. You are so right to move on this quickly. Within a week of her being out of the hospital ( she was in a month)we flew to the Mayo Clinic in Rochester Minnesota (they have an awesome Traumatic Brachial plexus team there) We did lots of research and they were the only ones willing to attempt her surgery (she had complete avulsion of her brachial plexus on the right side) with horner syndrome and phrenic nerve paralysis. Also, at Washington STate University in St.Louis, Missouri there is a Dr.Mckinnnon who is also supposed to be very good with TBPI. Hope this helps and good luck. Email me anytime at coxfamily@gci.net

[admin]

Bumping this up for Lourdes and Chase.