June 9, 2019 at 9:06 pm #19762
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 and needs a wheelchair for mobility outside of the house.
Currently, I am looking for activities to entertain him this summer. He usually goes to overnight camp, but it is not wheelchair friendly and the heat/humidity makes is oxygen level drop. We also used to have season passes to Six Flags, but recently had to get a refund because they don’t allow oxygen on the rides.
He is having a hard time accepting this way of “living” and doesn’t want to be seen with oxygen or in a wheelchair. Does anyone have any suggestions for motivating him to do anything and oxygen friendly activities? I’m thinking archery, fishing or even golf if he takes a cart. Any exertion makes his oxygen level drop, but it does bounce back up.
I am also nervous about flying anywhere. I don’t know how much oxygen he would need. He had one altitude test before his biopsy/bronchoscopy and failed miserably. The surgery worsened his condition, so we probably have to repeat the test.
June 10, 2019 at 4:06 am #19763Mark KoziolParticipant
Hello Rayna, it is very disheartening to hear what your son is currently battling. I know there are camps specifically for children who are disabled. I am just not privy to where they are located. Maybe do a google search and later when I get home I will also look for camps for special needs children. Take care. Mark
June 10, 2019 at 4:54 am #19764
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.
June 10, 2019 at 6:18 am #19765CynthiaParticipant
It’s heartbreaking to think of a child dealing with this disease. Do they think he’ll be a good candidate for a lung transplant? I do hope he finds ways he can enjoy the summer.
June 10, 2019 at 6:35 am #19766
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.
June 10, 2019 at 8:33 am #19768
Thanks for writing and sharing your son’s story. I can confirm that I know several pediatric lung transplant patients who have survived (and thrived!) beyond that 5 year mark so I do hope that is the same for your son. Prioritization actually doesn’t have to do with age, it has to do with match of the donor lungs. Of course, if there are two recipients that match the donated lungs then a child takes priority, although this rarely happens due to antibodies, blood type, etc. I know the one child I worked closely with had to have the lungs cut down to fit her chest cavity, so there certainly are options out there to ensure children get lungs but the ultimate priority for anyone on the transplant list is match between donor and recipient. I just wanted to sure that information was as clear as possible for everyone 🙂
June 10, 2019 at 9:39 am #19770
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.
June 10, 2019 at 1:22 pm #19772MarianneParticipant
Hi! Sorry to hear of your son’s diagnosis. I know there are wheelchair basketball leagues. I am not sure of they are available for teens. Does your son’s doctor know of other teens who have chILD? Are there any support groups online where he could chat with other teens? This is a hard disease for adults to accept and I can only imagine the difficulties of a young teen accepting it. Charlene – do we have a group of under age 20 online in PF news? My heart goes out to you and your family during this difficult time.
Marianne – diagnosed 5/24/19 with IPF
June 11, 2019 at 7:40 am #19777
Thanks for your kind words and support you offered to Rayna, I am sure she appreciates it 🙂
As for your support group question – it is a good one, as I toyed with the idea of creating a forum for IPF patients under a certain age, but went instead with the Young Adults forum to try and include a number of different ages. While I know there are other young adults out there (I am 31), as I see their postings on Facebook groups, this forum hasn’t been a widely used one in terms of connecting with other young patients. Off the top of my head, I can’t think of anyone who is a parent of a child with a fibrotic lung disease. I do know a few parents of kids with pulmonary hypertension, but it is a different disease. Good question, I do hope Rayna feels supported here. Although we’re patients and not parents, I hope we can provide her with some support and comfort for her son.
June 10, 2019 at 8:02 pm #19773MarianneParticipant
Here are some links that might help you connect with others that have a chILD
Children’s Interstitial Lung Disease Foundation –
National Health Lung Blood Institute –
Hope these help.
July 26, 2020 at 7:26 am #25063DanaParticipant
Our daughter is awaiting diagnosis now. She is 14. She is a cancer survivor , she was born with retinoblastoma. She received chemo at birth and then again at 2.5 yrs when the cancer escalated and tracked out of her eye. She has done great and has been cancer free over 10 yrs! During one of her survivor appointments she failed her exercise test… no one really thought much about it , maybe she just isent athletic? During that appt she refused to do a PFT . So , during the next year we thought she had allergies and took her to her pedi they gave her meds and I asked for a PFT she failed, we thought she just” was being stubborn”. We noticed a dry cough and she seemed short of breath.. she never complained until one day she said when she galloped her horse she was out of breath. I immediately got her to the pedi who immediately got her to pulmonologist who started all the testing…her CT showed fibrotic changes, ground glass ect. She has now had every test known to man which showed nothing and the last thing is the biopsy (open lung). Her says go easily down to 89’s but with rest will recover into 90’s. I think this will be latent chemo caused fibrosis , the life expectancy from diagnosis is 5 years. How do you tell kids this info? I am a nurse and I have answered her questions but offered no other additional. She has a slight cognitive delay from chemo also. She is also adopted. She was 8 mo old when we adopted her. The waiting is killing us even though we know the outcome. Transplant will be her only chance at survival …
July 28, 2020 at 10:21 am #25076
Thank you so much for writing, though I am terribly sorry to hear that your daughter is awaiting diagnosis. You wrote to me a few days ago (I apologize for the delay in getting back to you!) … do you have any additional answers yet? Your daughter sounds incredibly brave, as are you to walk this difficult journey alongside her.
Unfortunately, this disease is so cruel as it can manifest itself as something that occurs after chemotherapy. I have a few friends who developed PF secondary to their breast cancer treatment, so unfair! I’m so glad you got her to the doctor who then referred her to a pulmonologist for testing; identifying PF early is really important. Here’s the thing about the prognosis Dana: it’s just a number. While the literature, though some of it is outdated, says 3-5 years, I know many people who have far exceeded that window of time. This is important to remember, although easier said than done, I know. I really struggled with the prognosis as well, when I was diagnosed at 28.
I am lucky to have worked in both an ICU, bereavement center and oncology inpatient unit with kids prior to getting sick. Speaking with her openly and honestly when answering her questions is important, and of course doing so in an age-appropriate way. When talking to children about chronic illness, the literature is pretty consistent in “how” to do this: let them guide the conversation. They will ask the questions that they need to in order to satisfy their curiosity; this is one “easy” way to gauge how much/how little to tell them. When they stop asking questions, that is all the information they need at that time and will come back with more when their curiosity peaks again. In my experience, its when parents try to determine how much/little to tell them that both the child and adult gets overwhelmed, meaning one might not be ready to receive the information, despite the other wanting to give it. Does this help at all?
Feel free to connect with me directly Dana ([email protected]) if I can be of any assistance. I want to be mindful of how much information I pour into my reply here.
Thinking of you and please keep in touch.
July 28, 2020 at 10:47 am #25077
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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