Hi, because of a post on the general board: Why an ultrasound test done of diaphram?
I have questions of Adult OBPI.
Over this summer I have been reading about other tests done for breathing. I believe Kath mentioned having a test for breathing.....not sure what test.
My Jill, now age 21, born severe LOBPI, at 10# 8 ounces, never had any tests for breathing. Not only that....she was not breathing when born, and had to be revived. Her entire shoulder, arm & hand were limp and hung flaccid with NO feeling.
It is visually apparent that her entire left torso (down to her waist) was affected because of decreased size (shoulder, breast, etc.). She carries her left shoulder higher than her non affected right shoulder, because her stronger right torso muscles were pulling her over.
Non of my daughters were big into sports (although they did do track in Jr. High because no cuts were made), where it (breathing difficulties) might have shown up.
The only testing Jill has had relating to BPI is 2 EMG's (one at age 6 weeks in 1984 & one at age 14 in 1998) and numerous X-Ray's looking for boney deformities (she never had any boney deformities).
Now my question.
Is it possible that Jill could have this Phrenic nerve damage?
Would it have been noticeable by now, or is it yet another thing that could come to light as she ages?
Do any of you know if Phrenic Nerve Damage can go undiagnosed and later come up as a problem....as an OBPI person ages?
Would Phrenic Nerve Damage be more obvious by now, if she had it?
Phrenic Nerve Damage?
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admin
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Re: Phrenic Nerve Damage?
I just happened to log on to this message board. I usually visit the main one for parents with BPI children. I thought I'd read alittle about what adults with BPI had to say.
My son is 5 and sustained phrenic nerve damage, along with his RBPI at birth. I found information concerning phrenic nerve palsy on neonatology.org. Often, however, you have to search under diaphragmatic paralysis to gather information. Often these two terms are used interchangibly.
Phrenic Nerve Palsy occurs in 5-9% of BPIs. 80-90% of all phrenic nerve injuries are associated with BPI. My son's ped pulmanologist said the other 10% of phrenic nerve palsies occur during chest surgery or from a severe trama, because the phrenic nerve is buried so deeply in the body.
The quickest way to tell if your daughter has Phrenic Nerve Palsy is by having a flouroscopy (a moving X-Ray). If she does, the flouro will show the diaphragm in an elivated position. It will be quite obvious. Depending on your doctor, it can be detected by listening to the chest, since the air movement is limited into the lung.
My son has no use of his right diaphragm and never will. The only two possible options for treatment is a type of pace maker, which runs the risk of burning out the nerve entirely, if it is working at all, or a procedure to tack down the diaphragm to allow the lung to expand fully. At this point, our pulmanologist said that as long as our son is heathly, then there is no need to do anything else. Hope this helped!
My son is 5 and sustained phrenic nerve damage, along with his RBPI at birth. I found information concerning phrenic nerve palsy on neonatology.org. Often, however, you have to search under diaphragmatic paralysis to gather information. Often these two terms are used interchangibly.
Phrenic Nerve Palsy occurs in 5-9% of BPIs. 80-90% of all phrenic nerve injuries are associated with BPI. My son's ped pulmanologist said the other 10% of phrenic nerve palsies occur during chest surgery or from a severe trama, because the phrenic nerve is buried so deeply in the body.
The quickest way to tell if your daughter has Phrenic Nerve Palsy is by having a flouroscopy (a moving X-Ray). If she does, the flouro will show the diaphragm in an elivated position. It will be quite obvious. Depending on your doctor, it can be detected by listening to the chest, since the air movement is limited into the lung.
My son has no use of his right diaphragm and never will. The only two possible options for treatment is a type of pace maker, which runs the risk of burning out the nerve entirely, if it is working at all, or a procedure to tack down the diaphragm to allow the lung to expand fully. At this point, our pulmanologist said that as long as our son is heathly, then there is no need to do anything else. Hope this helped!
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Angela Butterfly
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Re: Phrenic Nerve Damage?
Thank you Dani, for the additional info.
Does your child do O.K. with day to day activities. Can he run and play, like regular 5 year olds? Does this hold him back? I hope he can run and play O.K.
Until this summer, I don't remember knowing this could even be possible. I will have to read more about this, at the sites and references you gave.
Does your child do O.K. with day to day activities. Can he run and play, like regular 5 year olds? Does this hold him back? I hope he can run and play O.K.
Until this summer, I don't remember knowing this could even be possible. I will have to read more about this, at the sites and references you gave.
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admin
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Re: Phrenic Nerve Damage?
Yes, he does really well. He actually played soccer in the 5/6 year old league this spring. Of course, he mostly hung on the goal post or other players, but he still had fun! He did seem to tire a little easier than some of the others and would ask to come over and get drinks a lot. At this point, however, I don't know it that was due to the Phrenic Nerve Palsy or just his inexperience with the idea of an organized sport. Until this point, he has ran and played with other children w/o seeming to tire more than others.
The one thing I am very vigilant about is when he starts to sound raspy. We have our own breathing machine that insurance purchased when he was born and an endless supply of pulmacort and zopenex (like albuterol) on hand. If he starts to sound funny, we start breathing treatments for about three days until it clears. He also gets a flu shot each year and had the RSV vacine when he was little.
Honestly, I worry more about his lung than his arm, because in the grand scheme of things, I feel like living without use of his arm is not as life threatening as living without the use of one lung. I am crazy when it comes to things like second hand smoke, etc.!
)
Hope all goes well with your daughter! Let me know how things end up.
The one thing I am very vigilant about is when he starts to sound raspy. We have our own breathing machine that insurance purchased when he was born and an endless supply of pulmacort and zopenex (like albuterol) on hand. If he starts to sound funny, we start breathing treatments for about three days until it clears. He also gets a flu shot each year and had the RSV vacine when he was little.
Honestly, I worry more about his lung than his arm, because in the grand scheme of things, I feel like living without use of his arm is not as life threatening as living without the use of one lung. I am crazy when it comes to things like second hand smoke, etc.!
) Hope all goes well with your daughter! Let me know how things end up.