Rayna
Forum Replies Created
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If this is a form of children’s interstitial lung disease it changes everything. Life expectancy is much better than adults. My 14 year old was diagnosed with IPF/chILD last year. Unknown cause.
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My son wears a ? on the school bus or any other crowded places or when there are people around him coughing or sneezing.
It is embarrassing for a teenager, but he knows it is to keep himself safe especially since he just got out of the hospital from a dx of flu, RSV and possibly pneumonia ( they couldnt tell if it was pneumonia or scar tissue on the xray).i want a mask that says, “Not sick, u r.”
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Aquaphor is water based. It has the consistency of vaseline and no odor. That’s what we use.
I use alcohol wipes when we r out and about if i forget to bring a backup. The alcohol evaporates in seconds.
I replace the cannula whenever it gets dirty, at least once each week, sometimes more often like if my son sneezes and doesn’t lift it up in time.
My medical supply company has an order for 8 or 9 per month, but I seem to be able to get as many as we need whenever we need it. I never counted, but they send us a box full of them.
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Hi Charlene, it has not been approved for use in children yet. They are starting trials with children hopefully in early 2020 and my sons doctor wants to get him into that ASAP.
She told us that it can possibly reverse the fibrosis but from what I’ve read I can only slow it down. What has your outcome been so far on this medication?
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Has anyone taken Ofev or been involved with the trial? My son’s doctor wants to enroll him when it is approved for children, possibly in 2020.
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We have been looking for a 5L continuous flow POC. My son cannot activate the pulse kind. Does a 5L+ POC exist? Our DME company gave us obe that goes up to 3L continuous and my son uses an oximizer to get up to the 5L requirement to maintain min. 91% oxygen.
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Thx Charlene! Yes of course match is #1. The 13-18 priority info came from my son’s doctor. If any of the pediatric patients’ parents would like to connect, I would love to hear about how they dealt with/are dealing with this diagnosis.
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We are in the process of laying the groundwork for transplant, but I hope we don’t end up there. The 5-year survival rate is only 50%. ? Kids aged 13-18 get priority status for transplants. His PFT after surgery was 32%. Last time we tested it was 40%. We redo the test monthly and he gas monthly steroid infusions for 3 consecutive days.
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Hi Mark – His doctor’s office has a family camp at the end of the summer; however, at this point he does not want to be with other disabled kids. He has not accepted his situation yet and just wants his old life back, pre-surgery, when he didn’t need a wheelchair or oxygen. He doesn’t even want to go out in public on oxygen. He was granted a wish through Make-a-Wish but won’t accept it until he is off of oxygen.
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Hi Cynthia – Sounds like we just went through the process at the same time. My son is the one diagnosed. He is 13 but has had a similar experience to yours. I cannot help you with Medicare as he has private insurance and we are currently applying for disability insurance through MassHealth. Are you able to use a pulse activated POC? My son needs the continuous flow, so we have a carry-on suitcase size POC. It only goes up to 3L, so we have an oximizer to boost his oxygen should he need it. Most of the time he is sitting in a wheelchair with the POC, so it’s not an issue. He has a tank as a backup. I would go with the DME company that can provide the equipment you need. We had to switch companies because our first company couldn’t provide a POC. My son needed that in order to return to school.