United Brachial Plexus Network, Inc.

I am Hannah's mom, Ellen. She was the youngest bpi at camp last year. We recently learned that she has a mild form of CP, periventricular leukomalacia. I was wondering if anyone else has this combination of problems due to their birth injury?

we were told a couple of years ago that Maia had a mild form of CP also because of all the problems we've had with her legs/feet. I never understood why we had all these other problems from a bpi and when it was explained that it was different, it made so much more sense! But I don't know much else about it nor does Maia even know. There can be a whole lot of stuff going on when a child has a traumatic birth. Maia has quite a laundry list and that's why I didn't want her labeled with yet one more thing...

Anytime you have a traumatic birth various problems can arise. As Fran mentioned, these two things BPI and CP are not related, but given all the problems that can happen during the birth it is not a surprise that CP can occur.

CP occurs due to a lack of oxygen to the brain and the brain is injured, it can happen in vitro or during the birth.

Hello,
In April of 2006, I had my very 1st Specialist Consult(at age 68!!) with Dr Nath. My correct diagnisis is Lower limbs CP and Upper body LOBPI. This explained alot of stuff I experienced and endured in my childhood and adolesence & really until finding UBPN in 2004.

I was informed that it is common in some children to have a combination with varieties of injury of both CP and BPI'S. When I "read-up" on the CP information I was fully convinced of my correct diagnosis.

Even tho' it's too late for me to have any surgeries, I recieved alot of emotional healing with this knowledge...
VALIDATION OF ISSUES AND PAIN IS EVERYTHING!

Hugs,[Hugs Heal too]
Carolyn J
LOBPI/70

Ellen,

The cerebral palsy is related to oxygen issues at birth. There are certain medical findings that we look for to link the CP to birth. For example, how much time was there from the delivery of the head to the delivery of the body. What were the baby's APGAR scores at birth. Was the baby born limp or with a blue color. What was the baby's blood PH at birth. With this information I would be able to link the CP back to birth. If you want more information, please post a note or contact me directly.

Ken Levine
617-566-2700
Klevine@Klevinelaw.com
Www.Klevinelaw.com

After Maggie was born they told me she would have CP because she didnt have oxygen for 10 min and there was bleeding on her brain and she was having seizures the night she was born. Well to this day there hasnt been anything else said about it. I guess power in prayer or she just hasnt been rediagnosed with it yet.

Thanks everyone for your input, Hannah wasn't walking yet at 18 months and my pediatrician had us take her to see a neurologist. She still isn't walking at 2+ years, but all the doctors think she will eventually. She will have trouble with all her gross motor skills, which of course makes her arm even more of a challenge. She has had 2 surgerys on her arm and has gained quite a bit of function.
Now I'm wondering if the CP is going to be a bigger problem than the arm for her. Luckily, she is beautiful, smart and very funny so she still has a lot going for her.

It became apparent to me early on that Maia had issues that were at many times way worse than her arm - it was overwhelming at times. Maia had to learn how to sit up - she had to learn how to stand up - she had to learn how to walk (finally at 22 months!) and then when she did walk she fell all the time and we got her gait analyzed and found out that she had a drop foot, a pronated foot and a leg that was 1 1/2 inches shorter (on the bpi side). (she wore foot orthotics for a long time and it did help a lot - it helped with the falling immediately). It took forever for her to learn how to jump without support. And it took absolute years of private PT for her to learn how to do stairs and she still walks them one step at a time and holding on to a rail. She didn't have a rhythm to her walk - she seemed "off beat" so we started her on a program with her PT called Interactive Metronome and that helped her tremendously. It helped her brain /body connection respond faster. Theratogs (a garment worn) helped her dyspraxia - she had trouble moving in space - she couldn't feel the left side of her body very well - and Theratogs was a brilliant helper with those problems. She has had sensory integration dysfunction since day one and we work hard at desensitizing her and she's really come a long way but it's still an issue at times (always at the worst times!).

So YES - it's like you said - these problems were at time much more difficult to deal with than the arm issues. There were time periods where we basically ignored the arm so that we could deal with the priority issues at hand. We learned how to pick our battles.

Now she's 10 years old and she's a drummer - drumming picked up where Interactive Metronome left off. For the first year she had a hard time keeping a balance and a beat (getting that leg to respond and the arm to respond equally) but she's getting stronger and it's coming along. At least one great thing occurred - loud sounds no longer bother her!! hahahaha

As Maia's mom and her caretaker for all these years - I am the only person in her life who truly understands all the layers and levels and struggles and the things that she still works on and the things that make her uncomfortable and why she has certain reactions to certain things. It's been quite a journey... and I have this great bond with her. I'm so proud of her.