Need some help for my mom please

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.

Cathy

49 Replies

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  • Hi

    As no one considered a Transtracheal Catheter,

    This feeds the oxygen direct into the Trachea via a small incision in the throat, a valve is fitted to which you connect the tubing.

  • Thank you Stone for your reply. No, this has not been given as an option at this point but as she starts to further decline that may be what will have to happen. She's still quite feisty and I know she won't agree to that option unless there is no other choice but I will discuss it with her. Thanks for taking the time to respond!

  • Odd they haven't offered transtracheal delivery already. Its pretty common in the U.S. unlike here.

  • Ad give hayfever pills a try i have never suufferd from hayfever till

    I got lung disease

    But i also suffer bad iching and do find antihistamines work

    Ad also run past you doc it wont conflict with meds shes already taking

    .

  • Hi D3NIS, Yes, she has been on three different types on antihistamines, two with no success and one that she takes daily because it does seem to help a little. Glad that they work for you! Thanks for taking the time to reply. I appreciate your suggestion and wish you well.

  • I am using oxygen 24/7. Although I don't have the problem you describe, and I use a cannula, I was also provided with a mask. It fits without any of the tubing coming into contact with the skin. Could this not solve the problem?

  • Hi Huwie Hex, Thanks for your suggestion. In the past when she was in the hospital, before this current problem arose, they had a mask on her and she couldn't tolerate it due to the claustrophobic feeling that she experienced. Maybe there are different types of masks on the market that wouldn't give her that feeling again. I'll check that out. Thanks!

  • I just don't understand "the claustrophobic feeling". I would really want not to have to use medical oxygen, but I have had to adapt to my medical condition. The mask will solve the problem which you described. The mask which I have is trademarked "Venticaire". I think that it is an American Company.

  • I will check out the Venticaire mask. Thanks!

  • Hello Lorenesdaughter, I'm so sorry about your Mum, I have been reading about her condition on the Mayo site, over the years I have found it to be a good reliable source of information. I will give you the link, I was wondering if you were aware that you are advised to be tested if you are related to anyone who has this condition as like my own emphysema it can be passed on through your genes. Your love for your dear Mum, shines out of your post and it touches me deeply, I wish I could give you sound medical advice but after reading as much info as I can, my best advice is to make life as stress free as possible, wishing you both well,hugs huff xxxhttp://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/basics/lifestyle-home-remedies/con-20030959

  • Thank you huffpuffer for both your reply and your compassion. No, I did not know that her disease, or emphysema, could be passed down. Thank you for that info. We have a Mayo Clinic three hours from us and had made mom an appointment to be seen there in February. Unfortunately we had to cancel it due to her health at the time. She felt that the trip, staying overnight in a hotel as well as the travel would be too much for her. She was also worried about the stress of the trip on my dad who is 89. We have talked about rescheduling to try to get her an appointment with both a pulmonary doctor and an allergist but honestly, we are afraid that we will be disappointed by getting the same "there's nothing that we can do", "I have no idea of what is going on with you", comments that we have received thus far. She is a tough lady who has handled all of her medical problems over the past 20 years with grace and dignity and I hope that if/when I am in the same situation that I will handle half as well. Best wishes to you. xxoo

  • Im confused by that im sorry if ive missed something in your post but what tubing is actually touching her face only the cannula should be and you've said she is fine with that

  • Hi Mandy 1365, Maybe my terminology is wrong. The piece that actually goes into her nose doesn't cause a problem but the rest of the tubing that is attached that goes up over her ears and back down under her neck is the problem. From my research, the nose piece is made of an entirely different type of plastic than the tubing.

  • Oh as you have managed to find out what the nasal cannula is made from i hope it isnt too long before you can get the information you need about the tubing.

    Failing that perhaps you could find something thats made from the same materials as the cannula

  • Hopefully that's what I can do or at least find someone else who is having the same issues who maybe was able to get the problem resolved. Thanks!

  • I wish you well in finding a solution for your dear mum. You are a lovely lady and your mum and dad are lucky to have you. What a caring person.

    Please ignore any not so nice remarks and report if necessary though this person is getting deleted regularly which is good.

    Let us know how your mum gets on. Best wishes, xxx

  • Thank you sassy 59!

  • No-one else sees the abusive posts honey, just a sicko, ignore! Sorry you have such a seemingly intractable problem but there just has to be a solution; my mind went back to the oxygen tents from very bygone days, could this be adapted in some way without the restricted mobility of the original? Desperate causes call for desperate measures. Hope you follow up on all the previous suggestions and please let us know how it works out - most of us really care.

  • Thank you Dragonmum. I have certainly gotten several ideas and suggestions that I had not thought of and do intend to pursue them. I appreciate all of the replies...well except for that one...but know that most people care about others and want to help if they can. It has been a blessing to have found this site and I am grateful for the support.

  • Hi Lorenesdaughter I'm not medical and have no experience with what you have explained but thinking about your mother's issues I thought that if you had a pair of light weight glasses frame from optician with no glass and attach the tubing to the frame and it would keep the tubing from her face :-) hope you sort it out soon take care

  • That's a great idea Jaymo1965! She does wear glasses but maybe we can get her a featherlite pair and attach the tubing to them. Love your "thinking outside of the idea!" Thanks!

  • Have a look at the glasses offered here as they may be the answer for your mother.

    oxyview.com/

  • Oh wow! This may help her to be willing to be on oxygen during the day as she is supposed to be. Going to check it out. Thank you!!

  • You're welcome, I sure hope it helps.

  • What a marvelous idea Jackdup! I wonder if they are available in the UK.

  • I know they were at one time but don't know if they still are.

  • That's a great idea Jaymo1965! She does wear glasses but maybe we can get her a featherlite pair and attach the tubing to them. Love your "thinking outside of the idea!" Thanks

  • That's a great idea Jaymo1965! She does wear glasses but maybe we can get her a featherlite pair and attach the tubing to them. Love your "thinking outside of the idea!" Thanks

  • I don't know why my comment won't post as a reply to your post Jaymo 1965.

  • hi would any of these covers help? directhomemedical.com/oxyco...

  • Thanks hilda1 but unfortunately we have tried several types of material, cotton, and fabric tape, as well as covers provided by the oxygen company but she can still feel the burn despite the covers. Appreciate your reply!

  • Good Morning - I am sorry that I cant offer you any advise - my husband uses a nose cannula and to date is OK (fingers crossed). It must be awful for your Mum. How lucky she is to have you. You have had lots of good advise I hope that one of those ideas help you. Take good care, lots of love TAD xx

  • Thank you TAD. Blessings to you and your husband.

  • When I was in hospital and used oxygen the tube I used was like a doctors stephascope and didn't touch me at all and had no problems maybe she could have a ventilator where you could attach a humidifier to it. On cepap machines. Some you can attach oxygen I think there bipap àdk tonight speak to the sleep clinic and see what they can suggest?

  • That's an idea that I hadn't thought of! The medical supply store in my town had no ideas but I hadn't thought about talking to the people at a sleep clinic. Thank you!

  • Your welcome when I started with a mask found it hard but my auto cepap machine pushes air into my lungs and another thing. Masks come in larger sizes perhaps they've given a size too small. Please keep in touch and let me knownhow she's doing.

  • Just a thought, do you know if your Mother is OK with rubber? The old fashioned natural kind. If you could get hold of some, would it be possible to cut a slit in the tube? Then wrap it round the tubing to stop it touching her skin?

    Maybe one of the men here could advise on this? The only thing I can think of, is the old fashioned tubing that was used for enemas.

  • We're thinking that she is allergic to a chemical in the tubing, which is made of PVC, but maybe they have an older piece of rubber hanging around the house that would have been made years ago, before all of the toxic chemicals of today were used. Thank you for the suggestion!

  • Do you store the tubing on a cabinet made from MDF? They use formaldehyde in the building process of the boards?

    Be Well

  • As far as I know she keeps it on her bed when she is not using it but I will caution her not to put it on any of the furniture for that reason. Thank you!

  • I might be thinking too far outside the box but maybe a light weight loose fitting skullcap or even a hat to attach the excess tubing might help.Wish you the best of luck.D.

  • Thank you for your idea! It's certainly something to think about trying.

  • Sorry about your Mums extreme allergy. Have a look at Oxyglasses.com. They supply the O2 through pipes inside the frames, ending in two nasal cannula into the nostril.

    Best wishes.XXX

  • Sorry I gave you the wrong link. Try Oxy-view.com.

  • Thank you Valcopd for your reply and the link. Will check it out.

  • Hell Lorene's daughter, I am so sorry your Mom is suffering like this. I have had an idea you might possibly find works.

    If your Mom is not allergic to pure cotton, or unbleached linen, would you be able to make or buy a simple bonnet? The tubes could go over it and protect the back of her head.

    Something like this perhaps?

    ebay.com/itm/Gingham-Red-Bo...

  • At this point we are willing to try anything! Thanks for the suggestion!

  • Sorry about you lovely mum,I cant help as I use different things ,but I am thinking of your mum,sister,dad,and you .please let us all know how you get on. mags x

  • Thank you coughleigh.

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