FEV 1 TEST FOR DAMIEN

[damiensmom]

Well Damien gets to go for infant pulmanory function August 11th hes Fev1. I have read up on this study and I am wondering what other infants forced expitory volume is. Also if I may what lung damage or possible daqmage occured. Dam ien had a lung collapse at 4 months weighing 7 pounds and has only been completely off oxygen for a month. he will be 9 months on the 1st of June.

 

[dyza]

I may be way wrong here, but is there any point to this test in a 9month old, will it give them a true figure? I very much doubt it, make sure that they are doing this for the right reasons, ask lots of questions, ask what they expect to gain from this

 

[damiensmom]

You very much doubt it? Why dont you look up fev 1/ cystic fibrosis and it is also good at determining transplants and getting the most yeaqrs out of that transplant. I stated I read up on it you should do the same

 

[eli]

Hi Aria,

I too don't know too much about it, maybe you can post the link you read.

My daughter had one done at 10months, and when iasked the doc's what the results were they wouldn't tell me. Thay just said it was part of thier research and that the results wouldn't mean anything.
I'm not sure how many doc's do it, but i just assume its being done for research, so htrey can test and see if there is any significance in doing it in babies on a regular basis.
Maybe you can ask your doc's and let me in on what they say, that is if you don't mind sharing.

 

[Diana]

Ok perhaps I can help. In recent years they have designed medical equipment specifically to gather information from infants and they are still studying the results they get in comparison to the lung capacity of healthy children. They generally do this by sedating the infant (with a cough mixture type substance) and they sleep through it while the machines do all the work. It is generally done in three stages and gives accurate measures to the lungs capacity. For example the machine will blow air into the lungs and then a little air bag blows up on top of the babies belly to blow the air back out and all the while a computer takes the necessary readings. It is actually really interesting to watch.

I have 2 girls with CF and the equipment has been around just a little bit longer than my eldest daughter who is nearly 5. So I have seen the process 3 times so far. They will only do this up to the age of 2 because after that the cough medicine to sedate the child is not as effective. It then takes a year or so more for the child to learn how to follow the breathing commands of a normal lung function test.

My eldest daughters results were high 90's and my youngest who had her first recently was 106. They classed them both as normal lung function. I would say the lower the number the better indication it is of a little more damage. I would think that a CT scan would be a better way of seeing if there is any real damage which (depending on which CF clinic you go to of course) can be done when they perform a bronchoscopy.

Hope this info helps and I am really to hear that damien is doing better....I tend to read your posts whenever I see your name just to see how he is. I thinks it's because Elisha was born not long after so I could relate to the age.

 

[dyza]

thanks Dee, sorry Aria, I didn't fully understand how the test would work on a baby i had visions of something completely different to what Dee described. Your right I will look into it more, so as not to make the same mistake again.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dyza</b></i>

thanks Dee, sorry Aria, I didn't fully understand how the test would work on a baby i had visions of something completely different to what Dee described. Your right I will look into it more, so as not to make the same mistake again.</end quote></div>



I understand your thinking since we were not aware of this "procedure". All I could think of was a 9 month old trying to blow out like I do & knowing that wouldnt work yet wondering how the machine used for me could be adapted enough for an infant.!

 

[CFHockeyMom]

Aria,

I think what Craig was questioning wasn't about the value of FEV numbers but the fact that they were trying to obtain them from an infant. For many this technology is an unknown.

People come here to learn and not all of us know it all, hence the reason Craig asked, <div class="FTQUOTE"><begin quote>I may be way wrong here, but is there any point to this test in a 9month old, will it give them a true figure?</end quote></div>

 

[anonymous]

Hi Aria,

My daughter had two infant pulmonary function tests done. Dee described the procedure perfectly. It is interesting to watch, although it made me a little nervous. Your child should be "sleep deprived" before the test. They ask that you keep them up late and wake them up early.

Samantha's FEV.5 (infant tests give half seconds) was 95 on the first test and 94 on the second. However her FEF's for the smaller airways were low. Her results indicated a lot of air trapping in her lungs. They also tested for an asthma component.

I also studied a lot and our doctor gave me a rather scientific article explaining the test and what the various results indicate. She invited my questions and discussion.

I find the more informed you are, the more doctors are willing to share information.

Maria (mom to Sami, three years old w/cf)

 

[Abby]

My daughter had her first infant pft done when she was just over a year old. It was an interesting process and they explained everything as they went along. Unfortunately, her first results were so bad that we had to rush to the hospital the next morning when they got the results. Her lung function was registering in the teens. She hadn't been acting sick and the nurses kept asking why we were in the hospital because she was jumping on the bed, giggling, having a great time. She never once had a fever, activity level never slowed down, appetite was good so needless to say we were shocked to hear how sick she really was inside. She spent 4 weeks on IV meds and had another pft 1 month after completing those. After her tune up she was at 97% and has maintained high 90's since. Had we not had that first pft done, I don't think we would have known how sick she was. It's been over a year since her last pft and I can't wait for her to be old enough for the next step. It's a big reassurance to me to see her classed as normal lung function.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Abby</b></i>

Had we not had that first pft done, I don't think we would have known how sick she was. </end quote></div>


This is the perfect example of why following up on a regular basis & doing treatments regularly are important. I fell into the "I dont feel sick, but my insides show differently" mode quite often. I think for the most part the signs are very subtle so until they have increase to something severe or have gone on for awhile you dont realize or at least for me.

 

[Diana]

Glad I could help.

I thought I should also add for damiens moms peace of mind, this is perhaps the least scary procedure to have put my children through. God knows we do put them through a lot and for very good reason but I especially like this one becasue there is no pain, needles or blood involved. Just peaceful sleeping! -although the sedative they give them can make them a bit grumpy just before they fall asleep.

So you can relax through this one. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[damiensmom]

Luv to all. Damiens ,Doc has been prepairing me for the test ..I know it will be easy for him. And imformative hopefully. I was wondering if all the parents were told or if you had to ask for the results . And I know I cant compare realistically one childs outcome to another .(mine) but I just still wanted to know what there fev1 results were. Damiens overnight oximeter saturation while sleeping overnight never went under 98% I was happy. And even after travel to clinic he was 100 and 99 % I have really tried to learn what i can about the lungs and what happens when they damage.I want to know how well Damien has recoverd. I want to have somthing to compare to. I know realistically it means nothing when comparing one child to the next as far as overall outcome. But there is always some one who has odds agqainst them and faired well. and visa versa . I actually look forward to the test. I hope it helps in whatever way. God bless.

 

[Seana30]

WOW....I had no idea they could do this procedure!

Am I correct in reading that the results are pretty accurate, or is this something still "in the works"?

Seana

 

[damiensmom]

Dyza lots of love to you and yours. it is no problem.

 

[anonymous]

o.k. I am confused...my son is 2 1/2 and I have never even heard of this test. He goes to clinic every three months and noone has ever mentioned this. Is anyone else in the dark about this or am I the only one? Thanks
Carrie

 

[anonymous]

I have two daughters who are 8 and 6 1/2 who both have CF. When my first child was dx, she had infant PFT's done. She was 14 months at the time. But by the time my second daughter was born, we had a new CF doctor (at the same CF clinci), and he did not have them done on her. He said that he didn't see a need to do them. So, it just really depends on the doctor.

 

[anonymous]

It also depends on the clinic and the hospital. Not all clinics do infant pfts. Our clinic only recently began doing them with the addition of a new pulmonologist who had done them previously at another clinic. They also need space for the lab and equipment.

Maria (Sami's mom)

 

[anonymous]

Seana,

From what our doctor told me the results are pretty accurate in comparing them to infants who have normal respiratory function. However, she said you can't exactly compare the numbers to a child's or adult's pft numbers, levels and percentages.

The results do give a lot of information. Besides the FEV.5, they give info on the functioning of the smaller airways, spirometry, info on whether asthma is evident, info on lung volumes, and whether air trapping is occuring.

Maria (Sami's mom)

 

[Seana30]

Thank you for the info Maria!

Seana