Facial Swelling - no diagnosis

My name is Keith Walker and I would like to introduce you to my daughter, Ms. Jordyn Rose Walker. She is a 15 year old child who has a mystery illness. She has been treated in three (3) different hospitals by 100s of medical professionals since 2007 and no one can figure out the root cause of her medical condition. As a matter of fact, after her 2017 episode, she was discharged from the hospital by doctors who assured us this was a “One in a Million Occurrence”. We have had 13 years of medical treatments (for symptoms that is) without any progress toward identification of the root cause of her illness or coming remotely close to a diagnosis. In the last 19 months, the secondary complications of this illness has robbed Jordyn of her sense of taste, smell and most recently, she has lost her sight…she is now permanently blind.

If you Google Jordyn Walker's Cause Research, you can see our Facebook page intended to create visibility to her Illness

I am posting this message with the hope that your research hospital will consider seeing her. We respectfully request you make this post visible to all of your talented autoimmune specialists and research physicians.

I can provide her most recent medical discharge summaries from the New Hanover Medical Center, Wilmington NC (July 2017) and the Kansas University Medical Center in Kansas City Kansas (2018). Additionally, there are photo-timelines for both her 2017 and 2018 episodes, and a 2018 Children’s Mercy Hospital Health History.

Overview of Jordyn’s Medical History:
-at 2 Jordyn was diagnosed with HSP
-at 3 she was diagnosed with Colitis
-at 4 she was diagnosed with Osteomyelitis - had surgery to remove
-at 5 she was diagnosed with Osteoarthritis
-at 6, 7, and 8 she was hospitalized for various bouts with colitis at Children's Mercy South - with no diagnosis
Between the ages of 2-8 she had repeat sinus, ear and bronchial infections between Aug-Dec followed by bouts with colitis the following February each year from ages 5 thru 9 years old.

Between 9 and 13, she had minor bouts of colitis but many less infections. In the summer of 2017, the colitis escalated into an extraordinary reaction that resulted in severe hemorrhaging from here mucous glands, extreme facial edema, and necrosis of the tissue on her face, in her mouth nose and throat which resulted in her loss of taste and smell.

In December 2018, the colitis transitioned much more rapidly to facial edema was followed up with exact same symptoms - uncontrollable runny nose, aching teeth, voluntary facial muscle twitching/failure - which precede the extreme body and facial swelling. The 2018 episode has left her permanently blind, as the swelling damaged the optic nerve beyond the capabilities of today’s medical science to repair it.

Thank you in advance for your consideration.

I forgot to mention that the final factor for the diagnosis was the results from a blood test they took. It's called the ACE levels. The results for this test took over a week to get back if I remember correctly.

Just at the end of last year I presented with facial swelling as well. All of it mostly being my partoid glands on both sides if my face. After 2 months of running test and doing CAT scans and MRIs I finally got the diagnosis of sarcoidosis. It's a rare autoimmune disease. I was treated with a high dose of steroids which was tapered off over a period of two months which did take the swelling down. I'm not sure if this is what you have but it does sound somewhat similar to my symptoms as well. I had no other swelling other than that in the face. The doctor said that it was very rare for it to present the way that it did which is the reason it took them so long to diagnose me. I hope this helps. Best of luck to you.

You may want to try Functional Medicine. Contact a Dr James Farley in Mahwah NJ (973) 978-4197. He is an autoimmune specialist.

Happy New Year to everyone. I am researching the Oil of Oregano and Grapefruit Seed Oil and wondered if there was any good suggestions on where and what to purchase. Grapefruit seed oil seems a bit more difficult to find as there are so many forms of the extracts but fewer of the oil forms for oral administration.

John, Those sorts of foods also feed candidia & other fungal, yeast, etc. & will make you sicker. Sugar also very, very bad. I stay away from it as my ears ring really loud & my face will totally blow up, mostly around eyelid & cheek areas. Good to know you will try these natural steps as this is for a cure & not just to cover up symptoms. Feel free to reach out to me anytime. Smiles, Lori Banta

Thank you for your insight. I will try this regimen. And find a nutritionist and a naturalpathic Doc.

I have found that water based foods are best. Refraining from starches, breads and all foods that take moisture from the body works.

Please try oil of oregano, grapefruit seed oil & probiotics for your son. I had a lot of the same issues for years & finally found out they were caused by a fungal infection in my intestines & sinuses brought on by way to much antibiotics needed to kill off a bacterial infection. Please try! Have you tried a nutritionist or naturalpathic dr? This is the only way I found the help I needed after seeing neuro dr, & all other specialist drs.

I have also experienced a lot of the same things you are going through to including facial swelling & digestive issues. The ONLY things that help me are oil of oregano, grapefruit seed oil & a very good probiotic at bedtime (never take during meals). I have to watch everything I eat also but since I have been on these 3 products my lifestyle has improved dramatically. All the doctors I have been shuffled around to have been baffled by my facial swelling, etc. I am telling you this as I did not get better at all until I started the above products mentioned. Your stomach issues are most likely caused by candidia infection (fungal). I have been healing my stomach & sinuses as I believe both these areas were infected. I have dealt with this off and on for 34 years now & this is the only time ANYTHING has worked for me. I also drink a protein shake every morning to help with digestion. All my issues started after an infection that ran wild through my body at age 34 & the doctors did surgery, then gave me the largest amount of antibiotics in the history of this hospital. These antibiotics saved my life but wrecked havoc within me ever since. I did not realize all this until last year. I now stay away from antibiotics unless it's a life threat that I need them. Please go see a good Naturopathic Dr. or a certified nutritionist as this is the only true help I have received. Oh, my facial glands were also so beyond swollen that my neurologist thought I Sjogren’s disease & my blood work showed very high levels for RA. My C Reactive protein levels were off the chart also. I see a specialist at Jewish National Hosp. in Denver next week but feel I really don't need to see him now (had to wait 2 months to get in). Anyway I really hope you take what I have said to heart as it may well be the same kind of issue I have been dealing with. I am so thankful for the naturopathic approach or I would still be super ill right now.