Facial Swelling - no diagnosis

@keithwalker I can only imagine the pain you must be going through. There is nothing worse than to see your child in agony and not having a diagnosis would only make it so much worse.
I sincerely you find a diagnosis and solution to help her.
JK

Look into leaky gut as it can start a host of terrible side effects as I have been going through.

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.

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.

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.

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.