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15
Aug 2009
Hypertonic Saline
Jeremy and I have a big decision in front of us. We’ve been praying about this for a couple of weeks now, and still don’t have a clue what we’re going to do. Two of Asher’s doctors have asked us to consider having Asher go through a clinical study on Hypertonic Saline for one year. People with CF lack water and salt in their mucus which makes their mucus thick. This thick mucus in the airways of their lungs builds up and leads to chronic cough and lung infections. Hypertonic Saline is an extra salty saline in nebulizer form. And, the hope is that it essentially hydrates the mucus and makes it easier to couch to get the mucus out, which helps lung infections from colonizing. This is all good stuff! And, the research they’ve been receiving from adults with CF on this new med is pretty great. The problem is, they don’t have a lot (hardly any at all) data on children under the age of 6 years.
So, we have a decision. Putting Asher on this new med would add about 30-40 mins to his daily regiment, which is already so long. But, the result could be healthier lungs. Again not a lot of data to research here (and you know Jeremy loves the data!), just the hope. There are no major side effects since it’s basically salt water, the time is just a big deal. Asher is going to have to go through so much in his life, and we’re just not sure if we want to put him through more now…but we’ve always said we’re going to hit this disease head on and at full force…so, we keep going back and forth, and back and forth.
If you think of it please pray we’ll make the right decision for him. Here’s a picture of Asher with his friend Reagan, he’s getting some counsel too :).
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Hard to know what to do. I pray that God will give you wisdom.
Wow…we will be praying for wisdom!!
That’s a tough decision to make. I know how valuable time is and I’ll too be praying for wisdom for you guys. By the way, such a cute pic! I think they are talking deeply.
LOVE the new blog. I will be in prayer about this, Rachel. Please keep me posted. I know this is a tough decision…and I know we mom’s of kids w/ CF do not take any decisions regarding our children’s health lightly. Like I said, please keep me posted. This may soon be affecting us as well…
Hugs to you!
The Zabels will be praying that with knowledge will come God’s wisdom. We will also pray that your family will find peace in your decision! Love you, mean it!
Wow. . .praying for wisdom for you guys!!!!
I hope you can come to a decision soon.
The extra time is a big hit to Asher’s day to day life, but there aren’t many experimental treatments you’ll be asked to try out that have no potential side effects. I say go for it.
tough decision, I will be praying for you guys! I love the picture below this entry!
Ok, so this is the new blog, love it even more!
This is a tough decision, and I do pray for wisdom for you both. No side effects is a great thing. Is there a chance that study participants could get a placebo? That would stink for him to have to go through all that without gaining the benefit of the med.
Hi. Asher is adorable! We have a 4 year old with CF, also diagnosed through newborn screening. We also have a two year old without CF. I know what you mean about the studies. We are always trying to make the best decisions about the studies without adding too many treatments to his already complicated routine. Aidan has the same VEST as your guy and wears it daily for an hour. We believe a cure is coming and work hard everyday to fundraise. God bless our little boys!
http://www.caringbridge.org/visit/aidanneville
What a difficult decision. Keep us posted!
This was my first time checking out Asher’s blog. What a great idea! My 3 year old has CF and we have also been asked to participate in this study. I’m still thinking it over as well. It is a lot more to add into the day, especially with the 50/50 chance that we receive the placebo. This is gonna be a tough one for me since I am a single parent. Just not enough time in the day! I’ll be checking the blog to see what you guys decide. Good luck!
I love your new blog Jeremy. Great job. Seeing some new CF friends here makes me happy for you. God won’t take you through this alone. His mercy and faithfulness is new each day. That gives peace.
Rachel and Jeremy, I will keep you guys in my prayers. What a comfort it is to know a faithful God who will keep us in his tender care and walk with us every step of the way. Asher is a blessed boy to have you as parents!