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Rayna replied to the topic Parents of Children Under 18 with IPF or chILD in the forum Caregivers and Spouses 2 years, 10 months ago
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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Rayna replied to the topic The Awkwardness of Wearing A Mask In Public in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 4 months ago
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…[Read more] -
Rayna replied to the topic The Frequency of Changing Your Nasal Cannula in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 10 months ago
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 tim…[Read more]
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Rayna posted an update in the group
Research and Development 3 years, 11 months ago
Has anyone heard any updates about the effects of Metformin (a common diabetes drug) on reversing scar tissue? https://www.sciencedaily.com/releases/2018/07/180703131423.htm
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Rayna joined the group
Research and Development 3 years, 11 months ago
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Rayna replied to the topic Ofev may reduce risk of death in patients with IPF in the forum Clinical Trials 3 years, 11 months ago
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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Rayna replied to the topic Ofev may reduce risk of death in patients with IPF in the forum Clinical Trials 3 years, 11 months ago
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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Rayna replied to the topic Tips for Carrying Multiple Items as a Patient with PF. in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 12 months ago
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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Rayna replied to the topic Parents of Children Under 18 with IPF or chILD in the forum Caregivers and Spouses 3 years, 12 months ago
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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Rayna replied to the topic Parents of Children Under 18 with IPF or chILD in the forum Caregivers and Spouses 4 years ago
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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Rayna replied to the topic Parents of Children Under 18 with IPF or chILD in the forum Caregivers and Spouses 4 years ago
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…[Read more]
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Rayna started the topic Parents of Children Under 18 with IPF or chILD in the forum Caregivers and Spouses 4 years ago
Hi – I am looking to connect with other parents who have children diagnosed with IPF or chILD.
My son is 13 and recently diagnosed on 4/23/19 with chILD and Surfactant Protein Deficiency; however, there is usually a genetic marker and they haven’t found one yet, even with extensive genetic testing. So, his type is unknown. He is on oxygen 24/7…[Read more]
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Rayna replied to the topic Recent diagnosis; so many questions in the forum Diagnosis Information and General Questions 4 years ago
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…[Read more]