United Brachial Plexus Network, Inc.

When my daughter went to have all her tests done they also did a ultrasound of her diaphram.We will not see the doctor until August so I was wondering if anyone knows why this test is needed.Have any of you or your children had to have this test?
I really appreciate everyone being so wonderful and answering all my questions, on and off the posts.Thank You

The phrenic nerve controls the diaphragm, which affects breathing. Damage to the phrenic nerve can also accompany the original injury to the nerves of the brachial plexus. So that is what they are looking for.

It is good that they are doing such complete testing.

Nancy

I had 2 docs tell me and a OT, that you can sometimes see if a child has phrenic nerve damage. If they lay on their back and you watch the rise of their belly if it is uneven, they have damage. However, when Javier was younger- I would watch his very uneven belly-rise and become so scared. He did not have phrenic nerve damage. So much for the uneven theory. It is great that they are being so thorough with the testing. Best of luck to you and your child.

Marlyn

Thanks Tress, for asking this question.
Over this summer I have been reading about other tests done for breathing. I believe Kath mentioned a scope into the lung?

My question. 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 revived. Her entire shoulder, arm & hand were limp and 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 Pherenic nerve damage? Would it have been noticeable by now, or is it yet another thing that could come to light as she ages?

Angela I did not have a scope. I had breathing tests because I believed I did not have true Asthma and mentioned it to the doctor.
I failed some of the tests and mentioned that I was told as a child/teenager that my diaphram was spastic and it cause breathing problems, croup etc. I can be walking and comfortable and run out of breath. The specialist said he believes that my symptoms are the same as post polio paitents suffer from. It is muscle fatigue. He said when my lungs get compromised I don't have the strength to fight off the attacks so now I must have an inhaler in every area of my house and car and pocketbook and use it when I feel tight.

I hardly ever use it but he thinks I am better off using it immediately because I will not get as sick as I use to... I have and EXTREMELY sensitive sense of smell and often perfumes, cigar smoke, pipe, fire place, wood burning will al set me off. I drive my husband crazy because I won't stay anywhere that smells funny to me. Until I realized that some of the kiddo's have super sense of smell I thought I was being a pain...

It is important to check the children out for phrenic nerve damage and I am happy to see that a doctor is truly evaluating the child entire body and does not think it's only and arm injury.

Kath

Nicole's Pediatrician ordered a fluoroscopy when she was a baby, to see if there was phrenic nerve damage. It's an xray that watches the person breath. I don't think there was any particular reason he ordered it other than b/c she had a severe BPI and that phrenic nerve damage sometimes accompanies BPIs.

~Tina, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI)

Kath:
I find you comment about the sense of smell so interesting.... I happen to have a hightened sense of smell, but I think it is from being in the Kitchens...

However, Juliana is like a dog...she can smell ANYTHING! And we have left places because she says it smells funny.

Maybe a facial nerve is involved that we don't even realize.

claudia

Claudia
Trust me I smell things other people can't smell. I cannot stand the food on table when I am finished eating... can't stand the smell... It is annoying sometimes. I choose my seat in church even at the Opera to make sure I am not sitting next to anyone with strong perfume. When I lived in the city and traveled by public transportation... I use to get off the train especially when I was young and in school,I could not stand the smell of some people...even clean people... but than again some of them were strong... My boss use to go crazy because after lunch I could tell him what he had to drink at lunch... LOL...

I had Horner's and phrenic nerve damage and yes part of my face is paralyzed ( not very noticable) but I am aging more on the left than the right... good for photos ... right side only... LOL..
Kath

hello all im mommie to gabby 18 mos rbpi, she haD A FLUROSCOPY DONE TO CONFIRM THAT THE phrenic nerve was damaged and that she has only 50% use of the diaphram on the right side, she has symptoms to asthma and if she gets a cold with a cough we automatically go for an xray to rule out pneumonia. We will be trying a o2 oximeter on her at nite we thnk she's not getting enough o2 at nite and that is why she wsakes up so much during nite.

Shelly
That is what the doctor want me to do because I am the world's worst sleeper... he think I would begin to sleep better. My arm and face also wake me up if they are not covered and warm. He think that is why I was always sick as a child with croup and had pneumonia a several times. He feels the minute something compromises my breathing I should use the inhaler to immediately open my air passages. I hope this will work for Gabby and she will become a better sleeper than I am.
Kath (adult/obpi)