United Brachial Plexus Network, Inc.

Has anyone taken their child for lung function tests? If so, how old were they? My son has lobpi and had c4 damage as well, left hemi-diaphragm remains elevated. He just turned 4 and the pulmonologist we see says he's too young for the tests. Need to wait till about age 7. Wondering what others have come across with out there. Thanks.

We went for the tests when she was 5 and get them once every 3-6 months since then. The child just has to know how to breath out in a strong manner when told. They had it computerized, so all she had to do was knock down the bricks in the pigs house or make balloons fly, etc. We were so glad we took her when we did. She does not wheeze audibly but can have very reduced breathing capacity. She has some diaphragm involvement. Over the years we medicated her with steroids and albuterol and singulair and nasonex, etc. but we've had to stop all of that because of her bone density losses. But we do what I call "whistle therapy" - we blow into different types of whistles. And she sings at least 2 x a week in music classes. And she's going to start learning how to play a wind instrument this summer. So far so good off the steroids. Good luck.

If you don't mind me asking….how did you know that your child had C4 damage? What test tells you that his left hemidiaphram is elevated? My DS was just diagnosed with having asthma and I am (of course) wondering if his ROBPI has anything to do with it.

My son also has asthma and ever since he was a little baby has had heavy heavy breathing. Is asthma linked with BPI? Does anyone know?

My son has not had breathing problems/asthma. We found out about his left hemidiaphragm being elevated almost by accident. He was having problems with weight gain, and they went to do some x-ray that checks the rate of how quick your stomach empties (I think it's a gastric emptying test)Anyway, the radioligist then casually mentions "Oh, you know he has an elevated diaphragm?" Of course, this was news to us. Since then, we've been seeing a pulmonologist who says he's asymptomatic, but he could present with problems later. Just to keep an eye on him for wheezing, difficulty catching breath, tiring, etc.
There's never a dull moment!

My son has those symtoms, UHG.

Hi,

I am an adult with a TBPI which includes damage to C4. I have had breathing problems since the accident that caused the TBPI, but most medical professionals at that time put it down to the massive chest damage I had (15 broken ribs)

After the ribs had healed, it was obvious I was still having problems, but a simple chest X-Ray showed up the elevated diaphragm which finally proved that the phrenic nerve was/is damaged.

I have been researching phrenic nerve damage combined with BPI and it's outcome for quite a while now. In all this time, I have come across some incredible ignorance of the medical professions of the problem and the symptoms related to it. Many seem to immediately think that the breathing difficulties shown by someone with a BPI are asthma-related, and consequently give wrong or inappropriate treatment without looking for another cause.

Obviously, it would be perfectly possible for someone to have a BPI AND asthma, but I personally would recommend that just ordinary chest X-Rays should be done first before going down the route of using common asthma treatments. If it is purely a phrenic nerve injury that is causing the symptoms, then it is highly unlikely that these treatments will have any positive effect whatsoever.

Lizzy B

Most pulmonary function programs start with normal data with children from the age of 6 and up. It is difficult to know what the normal for children younger than that is. This is due to the fact that getting children to do an acurate test is difficult. Most don't understand the breathing techniques needed to perform the particular test needed. At the clinic I work at we have children 4 and 5 take turns practicing but we have no data to compare them to. I hope this helps.

This is an old post, in case anyone else was confused. Gayle