We went back to OKC today... Got the rest of the numbers form last weeks Pulmonary Function Test... Thanks to the help of RunSickboyRun, I think I got it this time.... Thanks Ronnie... (but please correct me if I am wrong..)
FVC ( Forced Vital Capacity ) Predicted 1.23 Lane 1.08 Lane's FVC=88%
FEV1 ( Forced Expired Volume in 1 Second ) Predicted 1.08 Lane .83 Lane's FEV1=77%
FEV1/FVC (Combined) Predicted 92 Lane 77 Lane's FEV1/FVC = 84%
Based on this last PFT we qualified to do a trial (must have greater or = to FEV1 75%) for a new drug Denufosol Tetrasodium Inhalation Solution. (which might improve the body's ability to clear secretions out of the lungs. I will discuss this further at a later time, we are first finishing our Enzyme study (and I am curious to get our fecal fat test results). Although Lane was not diagnosed until he was 4, I know he had Pancreatic Insufficiency since birth... Of course I reported it to the doctors on several occasions but I reported it as diarrhea... So I am curious to see his results on both types of enzymes.
I mention the Denufosol trial because we would be able to closely learn more about the PFTs, allowing Lane to have allot of guidance over a years time on how to properly perform these tests. Age 5 is a common age to start PFTs, but by being so young it takes a little time to get the most accurate readings as possible... so it is a good opportunity now for him to learn from the get go.. and he loves shooting that Rocket to the Moon...
The Denufosol Trial sounds like a really neat drug... Is anyone doing this trial???
Also curious to talk with anyone about sinus problems in child, Lane has had allot of what we called sleep apnea, (pre Diagnosis) but basically he is snoring and choking in his sleep, due to blockage. Curious about other young children...
Showing posts with label CF Pulmonary Function Testing. Show all posts
Showing posts with label CF Pulmonary Function Testing. Show all posts
Wednesday, August 12, 2009
Wednesday, August 5, 2009
Update on Dr. Appt...
Morning Meds, 2 nebs treatments and vest therapy and we actually made it out of the house by 7:30am to head to OKC for our Dr. Appointment... Thirty minutes into the drive he is already taking a nap! :) 
First things first, we must weigh in... Wow, we (okay he) gained 4lbs.... we have been trying to gain weight for 6 months without gaining 1 single pound and we just made up for it.... 
Here is the proof!!! 46lbs...
We get our blood pressure..
Lane then does his Pulse oximetry . He is always amused his finger is red... 
Brother Nick, does his sweat test (he was the last one to be tested) and his results were negative for CF... So all three older kids are CF free amen... 
Lane then did his pulmonary function test (PFT)... Scored .83 of the predicted 1.06 (not really sure if I just noted that correctly still learning).... We are counting on the score raising since Lane has only performed the test on two different occasions and they need a little practice :)
This is the swab culture that Lane had done... This picture does not look so bad, but believe me he was GAGGING...... This is to test for Pseudomonas....
This was the highlight for Lane.... He waited for this moment all week.... its ME... Yes Lane could not wait until mom had her poke... We are trying to determine on which side of the family the delta f508 gene is on, so it can easily narrow down testing for family members wanting to do gene testing to determine if they are a carrier or not... so this one is for you Lane... Love ya...
Now it was time to enjoy the rest of the day with a treat. We ate some pizza and played some games... I have been trying to attach something fun with each visit... Hopefully always making good memories one visit at a time....
And look, shortly after starting home Lane is out again.... wearing the well earned stickers across his shirt....
Made it back home 10 hours later and started treatments all over again... Exhausted...
We accepted the offer to join 40 other subjects from approximately 16 study sites in the US and Canada in a study for (PERT) Pancreatic Enzyme Replacement Therapy. Pert has contributed to a significant increase in the life span of CF patients. This study is for Ultrase MT12. In the past FDA did not require the approval of these drugs, however starting in April 2010 the FDA will be regulating and requiring approval of the safety and effectiveness of these enzymes. Lane is currently using Creon 10 and will continue to for the first half of the study and then switch to the Ultrase for the second half.... The study seems to require allot of information, but will only take place over the span of 38 days. So we are going to give it a try, knowing it will benefit the many CF patients that use the drug. Although we do not currently take Ultrase, I still feel we can benefit from participating as well. Hopefully we will discover which enzyme works best for Lane as well as receiving some testing free of charge that would otherwise cost us as well as our Insurance.... I am grateful to be able to work really closely with the nutritionist during this time period learning as much as posible about Lane and his diet as well as receiving additional information about the extent of Lane's medical condition concerning his pancrease and digestive system . So Lane will start this next week...
First things first, we must weigh in... Wow, we (okay he) gained 4lbs.... we have been trying to gain weight for 6 months without gaining 1 single pound and we just made up for it.... Here is the proof!!! 46lbs...We get our blood pressure.. Lane then does his Pulse oximetry . He is always amused his finger is red... Brother Nick, does his sweat test (he was the last one to be tested) and his results were negative for CF... So all three older kids are CF free amen... Lane then did his pulmonary function test (PFT)... Scored .83 of the predicted 1.06 (not really sure if I just noted that correctly still learning).... We are counting on the score raising since Lane has only performed the test on two different occasions and they need a little practice :)This is the swab culture that Lane had done... This picture does not look so bad, but believe me he was GAGGING...... This is to test for Pseudomonas....This was the highlight for Lane.... He waited for this moment all week.... its ME... Yes Lane could not wait until mom had her poke... We are trying to determine on which side of the family the delta f508 gene is on, so it can easily narrow down testing for family members wanting to do gene testing to determine if they are a carrier or not... so this one is for you Lane... Love ya...Now it was time to enjoy the rest of the day with a treat. We ate some pizza and played some games... I have been trying to attach something fun with each visit... Hopefully always making good memories one visit at a time....And look, shortly after starting home Lane is out again.... wearing the well earned stickers across his shirt....Made it back home 10 hours later and started treatments all over again... Exhausted...We accepted the offer to join 40 other subjects from approximately 16 study sites in the US and Canada in a study for (PERT) Pancreatic Enzyme Replacement Therapy. Pert has contributed to a significant increase in the life span of CF patients. This study is for Ultrase MT12. In the past FDA did not require the approval of these drugs, however starting in April 2010 the FDA will be regulating and requiring approval of the safety and effectiveness of these enzymes. Lane is currently using Creon 10 and will continue to for the first half of the study and then switch to the Ultrase for the second half.... The study seems to require allot of information, but will only take place over the span of 38 days. So we are going to give it a try, knowing it will benefit the many CF patients that use the drug. Although we do not currently take Ultrase, I still feel we can benefit from participating as well. Hopefully we will discover which enzyme works best for Lane as well as receiving some testing free of charge that would otherwise cost us as well as our Insurance.... I am grateful to be able to work really closely with the nutritionist during this time period learning as much as posible about Lane and his diet as well as receiving additional information about the extent of Lane's medical condition concerning his pancrease and digestive system . So Lane will start this next week...Tuesday, June 9, 2009
OKC Dr's Visit... Can you give me some good news..
We headed to Oklahoma City today to see Lane's CF doctor.... Lane participated in his first pulmonary function testing, which consisted of blowing into a big machine and trying to shoot a rocket to the moon... He was a little nervous at first, suspecting that there had to be something they were hiding from him, like a poke.... He was relieved to discover it was totally painless, and he did very well. I discussed the gene testing we had done on Lane. You receive two genes, one from each parent. In a CF patient, both genes are mutated. We have to pay each time we test for a new mutation so it can be a long and expensive process. For Lane, one copy was confirmed to be Delta F508, (which our Dr stated was a severe gene mutation of CF ), and they did not determine which gene mutation the other copy was. Our Doctor wasn't concerned with the other gene at this time, since it would not alter his treatment at the point. Not sure how that all fits together right now, will just have to wait and see, although I would have preferred any other 
results than the ones I was given. Like how about no CF... I was not surprised. I have spent many hours online researching different symptoms of gene mutations, and based on some of Lane's symptoms, like the wrinkling in on his fingers and hands (known as Aquagenic wrinkling) I already braced myself for the possibility he had the Delta F508 mutation. His visit went well, except for his weight which we need to focus on... So he will get a lot of high calorie smoothies....yum.... So I think "what now?"..... I can not go down that dark hallway to the little room in the corner of my mind, that only offers thoughts of despair. I cannot look ahead or look back. I must stay in the present.... Today, right now, this moment, and 
today was a good day... It is often hard for me to be able write the words that my heart is harboring.... I often start to journal, and it often becomes to overwhelming for me to continue. I often feel as if I am blogging to myself, and use the forum to work through my own thoughts and issues... I am currently battling with my inner self... and well yes a little angry... I don't want to be a part of this club. Everything in our life is completely upside down, and although I have faith that God will walk beside me through all this change, I still don't want to be apart of this club... I do know however, that this is right where God has intended for me to be at this moment in my life... My mind has flashed before me all of the ginger bread crumbs left throughout my life that lead me too this point, and when I place them all together, I get chills up my spine... I truly believe God has a purpose for me, my family, and most of all Lane. It does not sooth my aching heart though. So I shall walk this path, shed my tears along the way, and continue to grow in my faith that my father will provide, and never leave me....
results than the ones I was given. Like how about no CF... I was not surprised. I have spent many hours online researching different symptoms of gene mutations, and based on some of Lane's symptoms, like the wrinkling in on his fingers and hands (known as Aquagenic wrinkling) I already braced myself for the possibility he had the Delta F508 mutation. His visit went well, except for his weight which we need to focus on... So he will get a lot of high calorie smoothies....yum.... So I think "what now?"..... I can not go down that dark hallway to the little room in the corner of my mind, that only offers thoughts of despair. I cannot look ahead or look back. I must stay in the present.... Today, right now, this moment, and 
today was a good day... It is often hard for me to be able write the words that my heart is harboring.... I often start to journal, and it often becomes to overwhelming for me to continue. I often feel as if I am blogging to myself, and use the forum to work through my own thoughts and issues... I am currently battling with my inner self... and well yes a little angry... I don't want to be a part of this club. Everything in our life is completely upside down, and although I have faith that God will walk beside me through all this change, I still don't want to be apart of this club... I do know however, that this is right where God has intended for me to be at this moment in my life... My mind has flashed before me all of the ginger bread crumbs left throughout my life that lead me too this point, and when I place them all together, I get chills up my spine... I truly believe God has a purpose for me, my family, and most of all Lane. It does not sooth my aching heart though. So I shall walk this path, shed my tears along the way, and continue to grow in my faith that my father will provide, and never leave me....
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