Ariel's ADEM-A Story of Recovery and Hope

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Ariel's ADEM-A Story of Recovery and Hope

Postby Lauren » Mon Feb 15, 2010 9:40 pm

This story was submitted for another venue. I share it here to give parents and individuals with ADEM that there IS HOPE. There is RECOVERY. Never give in. Never Lose Hope.
God Bless You all,
Lauren
ARIELS' STORY
In January of 2009 my previously healthy teen daughter Ariel began experiencing new headaches, projectile vomiting and confusion which rapidly and ominously evolved into a state which would be any parents’ worst nightmare.
Ariel underwent every test imaginable, multiple spinal taps and MRIs.Diagnoses ranged from meningitis to Lymes’ to Lupus to multiple sclerosis. After several emergency department visits my daughter Ariel was eventually diagnosed with Acute Disseminated Encephalomyelitis or A.D.E.M. This disease is rare, a neurological lightning strike, occurring in less than 1 in 100,000 and with reported mortality of up to 30%.
Theorized to be an autoimmune response to a virus or vaccine and classified within a constellation of demyelinating diseases which include the well known Multiple Sclerosis and lesser known transverse meyelitis, Schilders, Balos, and Devics neuromyelitis, it primarily attacks children and teens.
The medical literature describes a process in which the individuals’ antibodies target and destroy the white matter myelin of the central nervous system. Much about it is simply unknown at present.
In Ariels' case the cause was unknown. She did have several vaccines in one day 6 weeks prior. She does have an uncle with Multiple Sclerosis. She had exposure to a mild gastrointestinal influenza just prior to getting ill. In my mind it was the perfect storm for ADEM.
Ariels’ acute phase would span several months and five separate relapses with hospitalizations including a Mercy Flight from RVMC ICU to Doernbechers childrens hospital in Portland. My health insurance has paid out close to a half a million dollars in reimbursements.
She was treated with the best medical science had to offer on this capricious and savaging disease. High dose steroids offered rapid but only temporary reversal of her neurological degeneration. Next intravenous immunoglobulins were utilized which also provided improvement only to proceed into decomposition and yet another hospitalization.
Her neurologist ,Dr. Walter Carlini ,bravely initiated a treatment in April of 2009, used only as a last resort in these rare cases.
Ariel had a large vascular catheter placed into the right atrium of her heart and plasmapheresis was initiated several times a week. Similar to the concept of dialysis and performed in the dialysis lab of RVMC, nearly her entire blood volume was removed during each session and the plasma component containing the offending antibodies separated, discarded and replaced with donor plasma.
Long after her discharge from RVMC, she continued the plasmapheresis twice a week for 2 more months. Dr Carlini honored his promise to Ariel and for her 18th birthday he authorized the removal of this tunneled catheter.
A small battalion of physical therapists, speech therapists and occupational therapists, neurologists and even a team of specialists at University of San Francisco’s Pediatric Multiple Sclerosis Center laid siege against this disease, advancing and reclaiming neurological territory that had been laid waste.
As a registered nurse of more than two decades, I am more than familiar with human disease, pain and suffering. I thought I really understood what courage was in the face of seemingly random and senseless pain.
I was wrong. I saw my daughter at her worst, unable to control her own body functions, unable to walk, unable to perform or even understand the most basic activities like putting on clothing, brushing her teeth , pouring a bowl of cereal, clapping her hands or reading a simple sentence. I witnessed physical pain that would make a grown man blanch.
What I never witnessed was self pity.
What I never heard was “Why me?”
What I did see was a greater sense of compassion and empathy towards hurting people. What I did hear was a singular focus to move toward her goals, re starting her life, becoming who she really wants to be.
Ariel brings me a cup of coffee every morning. She wraps her beautiful long arms around me and tells me she loves me each and every day. Sometimes several times a day.
Gone are the petty mother daughter arguments on the tightness of her jeans, the heavy metal music she enjoys, the untidy piles of clothes she leaves on her floor. When she dyed and shaved her hair into the blue mohawk she now sports, I barely blinked.
She has re applied and been accepted for a Pacific Northwest YouthCorp session this summer, a goal sidelined last year by ADEM. She is eagerly pursuing her GED at RCC and according to her instructors is doing very well.
This disease carried a potential sentence of disability.
Instead it became a gift. My spiritual faith grew muscles. I have my beautiful, sensitive daughter, alive and becoming well.
I have a daughter who has taught me volumes about courage and perseverance.
Ariel is not the same person. I am not the same person.
How could we ever be the same?
Lauren
 
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby Shirley » Tue Feb 16, 2010 1:14 am

Lauren,
Thank you for sharing Ariel's story, her journey to recovery is remarkable. You said'you never heard her say 'Why me'! I said it many times to myself and others in the early stages of my attack of TM, 6yrs ago. What a brave child, how awful for her to go through this debillertating illness. No, we will never be same again, none of us.

Take care, and again, thank you.

:ymhug:
Keep well



Shirley

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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby marieblond » Tue Feb 16, 2010 1:56 am

it sounds as a fairy tale. because such a lot of specialists are not available here. and when then only for private insured people.

I hope for improvement so simple "by myself" - for doing something in training movement skills. but perhaps it is a fate of the adult persons: I cannot extend my power. it is impossible - and my doc says in this concern nothing.
That which does not kill us makes us stronger.
Friedrich Nietzsche
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby Sew » Tue Feb 16, 2010 3:23 pm

Lauren,
Next time Ariel gives you a hug please give her one back from me. I'm Heather in Calgary and while reading your story tears ran down my face.
How very courageous of your beautiful daughter.
I hope and pray that all goes well for her.
:ymhug:
Heather
When given lemons, make lemonade!
Heather in Calgary
Keep smiling :)
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby Lauren » Tue Feb 16, 2010 5:19 pm

marieblond wrote:it sounds as a fairy tale. because such a lot of specialists are not available here. and when then only for private insured people.

I hope for improvement so simple "by myself" - for doing something in training movement skills. but perhaps it is a fate of the adult persons: I cannot extend my power. it is impossible - and my doc says in this concern nothing.

Dear Marie
I am sorry. It sounds as if you are saying you do not have adequate insurance or support. Ironically, as a single mother, I could not afford to add Ariel to my health insurance at work. Then another corporation bought our facility and for the first time, adding a family member to the health plan wouldn't bankrupt me. This happened just 2 months prior to Ariel becoming ill.
I can't imagine what would have happened had she NOT been covered.
Also just six months prior my 35 year old son, who lives with me had a brain hemorrhage-cause unknown. He is now disabled from working full time-memory loss, ataxia. severe headaches. Just 6 months after Ariel was sick, I had emergency abdominal surgery and was out of work for 2 months. We actually had to get charity food boxes just to eat. I almost went into foreclosure on my tiny 800 square foot house. So needless to say last year wasn't very fun..
In all of that I feel blessed as it could have been so much worse, so much more sad. My thoughts and prayers go out silently as I read each and every story here. The permanent disabilities, the deaths,the aloneness and fear. What can I say? It all just sucks rocks as my teen would say.
Take Care
Lauren
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby Tracy Baumann » Tue Feb 16, 2010 5:32 pm

Lauren,

I would love to speak with you directly. My daughter, 9 yrs this 1/11/10, was recently dx with ADEM, along with several other autoimmune diseases that started when she was 11 months old. This child has been through so much in her short life, that my heart is breaking in a million pieces. I need help and direction. The doctors here are so complacent and really do not know how to treat her. We even ended up in CHOPhilly and I still feel they were holding back. She is having some breakthrough events even on a tapered dose of steroids and I do not want to lose any more ground that we gained back. Please email me as soon as you are able: laydeebugcharm@optonline.net Thank you.
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby Shirley » Tue Feb 16, 2010 6:35 pm

I have tears running my face as I read of another child suffering with ADEM, Tracy, my heart goes out to you and your daughter. Lauren, I cannot begin to imagine the pain of seeing your children getting so sick, and then you yourself. How on earth did you get through all of this, I don't think I would have.

Will be thinking of you both and your children.

Take Care

:ymhug:
Keep well



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ADEM with spastic quadriplegia at 45 years old...how to heal

Postby focviu » Mon Jul 05, 2010 12:35 am

http://focviu.wordpress.com/

Hello.
It is wonderful to read this story, really the healing of Ariel is a gift from God, I am so happy to hear stories like this.
When my beloved cousin got ill in November last year, after all we have been through together fighting with this horrible disease, I thank God everyday that she is alive and I promised that when she gets better I will tell everyone how God made miracles with her.
I will tell you my beloved cousin's story...our story, actually, because eversince she got ill, I haven't left her side.
She is 45 years old, widow, mother of 3 kids. She is a brilliant university teacher, doctor in biochemistry, fresh writer, a great mother and a wonderful human being. She was diagnosed with ADEM and spastic quadriplegia and it seems that in Romania there is nothing more the doctors can do for her.

Briefing of her illness :
The disease has started on 11 th of November 2009, when she had a sudden numbness on her left arm. She drove herself to the hospital for what she thought it would be only a routine check-up. The doctors suspected a debut of multiple sclerosis and she was put on cortisone treatment. Her condition has worsened day by day, the left leg became numb, afterwards the entire body. Already after 3 days, she became unable to speak or react in anyway. The doctors then sent us to another hospital, in Bucharest. There, they reduced the cortisone, took another MRI and denied the initial diagnosis of multiple sclerosis. They suspected at first an encephalitis and started to investigate the possible sources of an infection. No sign of infection has been found. The investigations being taken further, they suspected first a leukoencephalitis, than a cerebral vasculitis, but, there were only assumptions, because the brain lesions and the way the disease was evolving were completely atypical. They discovered a hypertension, hypertiroidis and a very low immunity. Actually, she was immunodepresive and HIV was suspected, but, then denied.
A sudden fever has determined the doctors to transfer her to the viral diseases hospital, where she had an immunoglobulin treatment for 6 days and I could definitely observe a positive reaction of her body afterwards.
After almost 4 months, my cousin has slowly started to get better: she started to talk again, to gain in weight; the skin began to regain its normal color. She was fully conscious, clear, laughing, communicating, expressing her desires, making jokes, having a great appetite, enjoying music and movies and playwrights. She only had difficulties with calculations and short term memory, but, after a short while, we slowly managed to overcome these difficulties by exercising every day, practicing numbers, practicing naming objects and remembering them, practicing an “end of the day journal” where we talked about everything we did that day. I taught her again how to use her voice properly (because she could only speak in whispers at that time)..and so on and so forth.
In the last week of February 2010, my cousin’s state of health was not requiring artificial feeding anymore (by perfusions), she was looking really good and the doctors decided she was strong enough to get into a physical recovery programme. Up to that moment, we had done only massage for her, because, the terrible pains that she had in her muscles and joints were not allowing a serious workout. Due to the fact that she is allergic to painkillers, we were not able to ease her pains in anyway and she was (and she still is) very very sensitive to pain.
In the last week of February 2010, we went to the hospital for physical recovery. There, she was given massage, kinetotherapy and warm packing with paraffin for her joints. She was very responsive to the treatment :after 1 week, she could move her right hand alone, grabbing, sketch of extension on both legs, sitting in the wheelchair (not more than 2 hours, though, but able to hold her head alone and to sit without dizziness), I even managed to stand her up and hold her on her feet for a few seconds. So, the things were going very well.
On the 2nd of March, during a kinetotherapy session, after a few painful moves with the hands and feet, the kinetotherapist suddenly raised her up on the edge of the bed. Seems that the pain was too bad to be handled, because she suffered a cerebral vascular accident. She was urgently taken to intensive care…and we’ve been there for one month. She kept conscious and clear during the attack and afterwards, the hematoma has disappeared completely, but, due to this accident, she remained unable to speak and swallow. After 1 more month of tube feeding and a lot of “training” in swallowing, she started to swallow, but still cannot open her mouth too much and cannot chew.
Presently, I am feeding her mainly on tube and keep exercising swallowing and chewing with water and milk (other foods make her choke). She is perfectly conscious, clear, but she is unable to speak and to express herself otherwise than through smiling, laughing or through the expression of her eyes.
At the advice of the doctors, I am doing massage and kinetotherapy for her ( we agreed that her fragility is very dangerous and we saw that she was not accepting other person but me for massage)…her luck is that I have some knowledge in the field. Her physical condition is improving very slowly. It seems that the hematoma hasn’t affected in anyway her body progress.
Nevertheless, her immunity has remained weak, the body muscle mass needs to be rebuilt, she needs specialized help for learning how to chew and speak again…these are only a few things that I can see that she needs professional assistance for.
The final – not diagnosis, assumption- of the doctors (because they are still not sure) was “ADEM”, that resulted in “spastic quadriplegia”. They have also said that it is a miracle from God that she is alive and she is recovering after such lesions.
Needless to say that we would do ANYTHING for her to get well. What I ‘ve written is only a briefing of her disease’s evolvement, surely I have missed important things.Unfortunately, in Romania there is no way to treat her...no medicine for this illness, no hope for physical recovery, no occupational therapists, nothing!!! I want to help and I don't know how.I am absolutely sure that she will get well, but I don't know what to do for her.
If you know any good neuroimmunologist, medicine...recovery clinic...natural treatment maybe..anything, please, let me know.
Take care everyone and God bless you.
Cristina
Romania
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby edward » Mon Jul 05, 2010 5:56 am

Cristina: I got attacked by ADEM in March of 2008 at 46 yrs old. I was in a coma for 10 days and on life support. Several time during that coma the dr's said I was dying and there was nothing they could do. Their phrase was " he is in the death spiral" But alot of people all over the world were praying for me.
When I came out of a come I was completely paralyzed from the waist down. I could not even wiggle my toe. Nothing from the waist down worked. I could not tolerate the meds very well either.
There is too much to say here but to make it short; When I came home from the hospital , I worked out 3x's per day 6 days per week. At first I had to crawl down the stairs on my stomach because I could not walk but little by little things started coming back. I can write this and it makes it sound simple but it was unbelievalbe difficult. The pain was always there, in my legs mostly. I would spasm every ten seconds for hours and hours etc.....
I spent alot of time praying against this rotten disease also.
I stayed positive and determined I would get my life back.
Anyway, jump to today and I have a buring in my feet all the time, I have sharp pain on my right inner thigh or kneee area. My face is a little numb but that doesnt show. My bowels and bladder function fine but are just "different" than before
but I can walk and run and work out and do everything I did before all this.
Every one who gets this ADEM and TM react different . I do want to mention that my last MRI after all this they can find no lesions. They didnt have an explanation for this. They dont know why.

There is hope for your friend, dont give up hope.
The Bible says" A happy heart is medicine to the body"

Ed
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Re: Ariel's ADEM-A Story of Recovery and Hope

Postby marieblond » Mon Jul 05, 2010 9:54 am

hi ed!! the bible could be written by my grandgrandma!! she told so her long life long..... but only in a rougher kind.

kindly marie ;;)
That which does not kill us makes us stronger.
Friedrich Nietzsche
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