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Subject :Pulmonary Function Test/Sleep Study..
2008-11-23 23:52:48
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| Roxanne |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi Guys, Just wondering how many of you guys have had these tests? I would think these test are just as important as an EKG and echo. Nicholas docs have not mention them :? |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2008-12-09 02:36:10
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| bmdmom |
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| Ninja |
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Joined: 2007-03-07 02:22:22
Posts: 79
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Yes, the boys have had these tests annually. Nathanial will have a sleep study done this summer for the 1st time. I'm not looking forward to it! |
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Tanya mom to two BMD boys
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Subject :..
2008-12-09 04:02:03
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Nicholas actually haven't had these test done & i'm curious to know why his doctors feel it's not necessary. We have our 6 month appointment on Dec 19th and i'm requesting these tests for him. Nichoals just finished meds for a chest infection and had a chest xray this morning as he still has the cough. I'm wondering if his chest infection has something to do with his BMD as this disease weaken all muscles. I feel like I know more than his doctors sometimes it's very upsetting. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-01-05 11:19:30
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| Meisa |
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| Experienced |
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Joined: 2007-11-14 11:37:47
Posts: 39
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Hi Roxanne,
A pulmonologist recommended my son to have a sleep study done because he was waking up in the middle of the night and was thirsty. I haven't gotten this scheduled yet and was wondering how your sons went. My son is now sleeping better but the sleep study is on my list of things to do for him. |
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Subject :..
2009-01-05 22:08:44
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi Meisa, Happy New year! Nicholas actually hasn't had these test yet. We had our 6 month checkup just before christmas and I requested these tests for him. We are currently waiting for our appointment. I will let you know the results when we get them. Nicholas has been sick quite a bit this past fall and we were concerned because he suffered a chest infection which he was treated. His docs said he doesn't feel the infection had anything to do with his BMD as this stage in his life. He's 9. We want the Lung Function test anyway just to be sure. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-01-06 03:25:37
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| Meisa |
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| Experienced |
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Joined: 2007-11-14 11:37:47
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Hi Roxanne,
Happy new year to you as well. My son had the pulmonary function test (PFT) done at Children's in Cincinnati. The tests were pretty hard to do and in fact I don't think I would do very well on them myself. Jordan did really well with most but it wasn't easy. The doctors do worry about chest infections and it's a good thing you're looking more into it. I hate to say it, but half the time you have to push to get tests done with these clinics. I've learned to be more aggressive and am Jordan't advocate.
The pulmonologist recommended a sleep study for him which we haven't done yet. Good luck with it all. Here's to a healthy and happy 2009!
Meisa |
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Subject :..
2009-01-07 22:11:11
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi there, We rec'd Nicholas appointment yesterday in the mail. It's on January 26th, My youngest birthday. He will be 6. I will let everyone know how things go. Wish us Luck! :) |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-01-27 03:10:35
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi Guys, Well Nicholas had his Pulmonary Function Test yesterday. Not sure all the details yet. We have a follow up appointment next week to discuss the results with her. We do know that he will be diagnosed with asthma (from what the tech was saying and the fact we had to give him his puffer) I can't help to think MD and asthma might be linked somehow. How many boys with BMD have been diagnosed with Asthma? :? Thanks for any input.
regards.
Roxanne. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-04-24 04:41:28
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| bmdmom |
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| Ninja |
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Joined: 2007-03-07 02:22:22
Posts: 79
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Roxanne,
Nathanial was given a steriod inhaler saying he has reactive airway disease from BPD (in NICU). Its similar to asthma I guess - causes him to have a regular cough. The daily inhaler has helped. |
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Tanya mom to two BMD boys
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Subject :..
2009-04-24 07:40:36
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| kgoodfellow |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Not sure of the BMD/Asthma link. I've got BMD, but no asthma (or allergies for that matter). |
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K. Goodfellow |
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Subject :..
2009-06-15 04:10:09
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Nicholas has been diagnosed with moderate asthma and takes an inhaled steroid, twice daily. I'm worried about how this BMD might interact with his asthma in years to come :? More worries !! Tanya, that's interesting about what the docs said about the fact Nathanial was vented right after his birth. Nicholas too was on a vent the 1st couple of days of life. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-06-20 02:14:28
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| brandonsmom |
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Joined: 2009-01-11 01:21:29
Posts: 19
Location: Gardner, Mass |
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hello to all,
I'm am very curious about this sleep study. Brandon has a very hard time falling asleep and wakes up thirsty as well (we just leave a cup of water w/ him at night). He aslo sleep walks quite a bit, does anyone else have this issue? Don't know if any of this is related, but I wonder.
Brandon also suffers from night sweats, (that are worse if he has a lot of physical activity during the day). Does this sound similar to anyone?
Sometimes I feel alone, w/ what my Brandon has to deal w/ everyday but I get through it. I'm so glad to have this website and see that, we are not alone. |
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Sherri
Brandon 8, Joshua 6
both w/ BMD
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Subject :..
2009-06-24 21:08:17
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| Emma |
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| New |
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Joined: 2007-08-29 03:51:23
Posts: 5
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Hi Guys,
Yeah! Our Ben takes ages to go down at night and has regular night sweats.
Take care
Em x |
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Emma |
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Subject :Reoccurring Cough..
2009-07-08 21:34:33
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| Evans' Mother |
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| Experienced |
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Joined: 2008-03-26 04:43:09
Posts: 37
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My son seems to keep getting a running nose with a cough. The doctors always say, oh he's fine normal for kids, but it seems like every month he gets the same thing. Anyone else experience this with themselves or their sons? |
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