I have been desperately searching for someone, anyone, who can help me to help my mom because her GP, Pulmonologist, Allergist, and Dermatologist have no answers to her problem and we don't know what else to do for her. I found your website, and hope and pray that someone reading this can shed some light to what is causing her so much misery.
My mom is 87 years old and has Pulmonary Hypertension, among other things, and was put on oxygen at night a little over a year ago. She did fine for 6 months then began to have burning and itching on her cheeks, on her throat, and anywhere the tubing touched her skin. The cannula itself causes no problems in her nose. We tried covering the tubing with various things...fabric tape, several types of soft material, cotton, a wrapping that we got from the supplier, all to no avail. She says she can feel it through the materials. We've tried putting the tubing behind her head like a ponytail and that causes her scalp to burn and itch. She describes the burning feeling as like someone is constantly holding an ice cube to her skin. Her eyes have swollen horribly with constant tearing and she has been to the ER due to this. The ER doctor said that she had never seen anything like it. Prednisone helps but even after a 30 day regiment, the burning returns when the medicine leaves her system. She is now on her second round of Prednisone since January which is not good.
They have changed to Free and Clear laundry soap and no fabric softener. No relief.
The Pulmonologist had never seen this before and had no clue what is causing it and what to do. He wasn't familiar with the chemical DEHP.
The Allergist said it must be a contact allergy, one that she has never seen before and sent us to a Dermatologist. He had never heard of this happening and prescribed an ointment which helps very little.
Back to the Allergist for testing and the results showed that she is sensitive to:
1. p-tert-butylphenol formaldehyde resin
2. potassium dichronate
3. diazolidinyl urea
Immediately upon getting these results I took the literature provided and checked the products that she uses. She wears no make up and none of her hair care products listed any of the variations of the above chemicals. I can find nothing in my parent's house that has these chemicals listed as ingredients. I have spent hours and days on the phone and the internet trying to find information to help her. I have looked at government websites, (USA) going through list after list of chemicals and products manufactured with them but the one thing that I have not been able to find is exactly what chemicals are used in the manufacturing of oxygen tubing.
Soon after this started, I contacted Salter Labs, the manufacturer of the tubing that she is provided and were told about DEHP free tubing and got some of that. No change and no relief for her. We have gotten her concentrator changed to a different unit thinking maybe something in the concentrator was causing the problem. The current unit is an Invacare Platnium 5. My dad and I are diligent about cleaning the filter, making sure the water is fresh in the humidifier, changing the tubing on schedule, etc. etc. etc. following all of the instructions that we were given. We have been told more than once that there is nothing inside the concentrator that would cause the reaction that she is suffering with.
My mom is getting worse and now is supposed to be on oxygen 24/7. She refuses to do so because of the misery and pain that the tubing causes her. She is depressed but rarely complains but is slowly dying from lack of oxygen to her organs. She will sit and hold the cannula to her nose and breathe the oxygen for a bit when she gets short of breath during the day but most of the time will just "wait for it to pass." For the past 6 months we have gotten no help from the medical professionals and the Allergist told us flat out that there is nothing that she can do for mom. No one seems to care that this sweet little old lady is suffering daily from the very thing that she needs to live.
What I am hoping that someone can tell me:
Is oxygen tubing manufactured using any of the above three chemicals that she is allergic to? This is something that I have not been able to find out from anyone that I have contacted.
Do you know of, or know if there is a manufacturer of tubing that is free of any of these chemicals?
I very much appreciate your time in reading this and any information that you can give me. It is so very sad and frustrating to know that my mom is going to die sooner rather than later due to what is happening to her.