A request from you all.: Hi everyone... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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A request from you all.

LEEJUNFAN profile image
LEEJUNFAN
β€’32 Replies

Hi everyone!

Our dear friend Dan and his family are experiencing much pain at the moment in regards to his Daughters recent admission to Hospital after being diagnosed with Hives.

She's in a lot of distress as they all are.

Please will you all send your love and prayers to Dan and his family as we all know what a great Ambassador he is for us all.

Thank you all so much.

He will greatly appreciate it.

Best wishes always!

Tony and Kim xxπŸ‘ŒπŸ˜ŠπŸ˜Š

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LEEJUNFAN profile image
LEEJUNFAN
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32 Replies
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englishmumof2 profile image
englishmumof2

Sending hugs, love, positive vibes, and I wish some relief! Xxxx

in reply to englishmumof2

englishmumof2.

Thank you my dear friend.

Love from Seattle.

Dan

Love and get well wishes being sent from Scotland. Take good care x

in reply to

Sophers.

Thank you my dear friend from Scotland.

With love from Seattle

Dan

patti86 profile image
patti86

absolutely. I am new here and Dan has been so great at helping.

sending hugs and prayers that everyone is feeling better real soon.

:-)

in reply to patti86

patti86.

Thank you Patti. Our love to you.

Dan/ Seattle

I do some mantras during the day depending on how my energy levels are.

I read from the 37 practices of Bohdisattvas (Tibetan Buddhism) as that is like reading the 10 commandments each day, but a little longer and we who practice are the Bodhisattvas.

So I dedicate the below practice to Dan's daughter and all his family today -

When (sublime spiritual friends) are relied upon, ones faults are exhausted and one's qualities increase like the waxing moon. Cherishing sublime spiritual friends even more than one's own body is the bodhisattvas practice.

ukmsmi4 profile image
ukmsmi4 in reply to

That's a beautiful thought. xxx

in reply to

Amallia.

Your spiritual dedication brings so much meaning and peace into life. Very special thank you for the gift of sharing life here. You are a beautiful soul.

Dan / Seattle

ukmsmi4 profile image
ukmsmi4

Warm gentle healing hugs winging their way across the pond!

Pleases look after yourselves Dan and take all the time out that you need.

Blessing. Margaret. xxx

in reply to ukmsmi4

Margaret.

Your hugs made the journey. We are wrapped in them this morning. We send much love and thanks back your way.

Dan / Seattle

41273416a profile image
41273416a

Dear Dan,

I pray for comfort and healing for your daughter. As a parent,I know you also feel every pain and discomfort your daughter has. Love to you and your family.

Love, Mary B

in reply to 41273416a

Mary.

What a special blessing you send for us. We never outgrow being a parent. It connects us back to her birth and early struggles for life but she made it and thrives as a beautiful strong adult.

Comfort is now felt and healing may be on its way. Our family sends love back to you and yours.

Dan / Seattle

Love, hugs, support, all coming your way to help through this pain, will be thinking and waiting for good news. For all your family. πŸ€—πŸ€—πŸ’ͺπŸ€πŸΆπŸ’«πŸ’

in reply to

Lisa-anne.

The joy of hearing from you. Thank you. We will get through this. I hope you enjoy this day with as much love, peace and comfort as possible.

Dan / Seattle

leonora123 profile image
leonora123

I only dip in and out of here so do not know you as others obviously do, however, I am so sorry that you and your daughter and I am sure the rest of the family are all suffering, my thoughts are with you and I hope that things are looking up for you all very soon, special wishes to your daughter for a speedy recovery.

in reply to leonora123

Leonora123.

How special for you to send us your message. Our whole family thanks you for your good thoughts and wishes.

Dan / Seattle

Hi Dan, you have helped so many people over the past few months I've known you, so now it's our turn to help carry you through this difficult time. Please know that we all have appreciated so much what you've done for us and others.

I hope your daughter gets well again soon. If she was bad enough to go to hospital, then she will have been quite an ill girl, which is so hard for any parent to sit by and watch. Remember to look after yourself...time slips by unnoticed while sitting beside a patient, and it can be difficult to remember to feed yourself and look after your own needs...don't forget now, OK!

in reply to VivienneWaterworth

Vivienne.

You mean so much to me. With all you go through, you still are able to find the right words to carry us through. We will stay right with Andrea until she recovers. Hopefully, we will avoid hospital as I believe we have finally found a way to stabilize her.

Please take care of you. Our love.

Dan / Seattle

Ailsaw profile image
Ailsaw

Sendings lots of hugs πŸ€— and healing wishes to your daughter , take care x

in reply to Ailsaw

Ailsa.

Thank you for your wishes. Very special to hear from you.

Dan / Seattle

Good early morning Community.

We made it overnight without having returned to urgent care. Tony and Kim. Thank you for your call for support. My daughter has actually avoided hospital admission as the emergency doctors had told us she would be admitted if we returned a fourth time for necessary procedures.

Thank the angels above as she remains home with us.

We watched her overnight and continued to administer the meds which have been made available to us.

She only reported one brief spell of breathing distress that required the inhaler within the last few hours. That is an improvement.

A quick look at her skin shows some improvement from the hives at the moment. She had been covered head to toe with severity i had never seen before. We have been told to expect wild fluctuations in this status based on severity of onset and chronicity out one month or more. She also fluctuates with the angioedema which is better at the moment too.

I do find hope in the possibility that we are now getting the meds - six oral and three topical and one emergency injectable - adjusted right to stay on top of the outbreaks.

Urgent specialist referrals await our start to next week.

She is now sleeping and after many days / nights perhaps resting for the first time.

Your replies to our family overwhelms our emotions. We have felt your presence all along. The spiritual support and love kept us going. Thank you from all of our hearts. We do not know how we would make it without you.

Andrea is an amazing soul. She fights very hard and commands a great awareness and self control. I will share your wonderful messages with her and Patricia when they arise for the day.

Praying this day is better for us all. Thank you all again.

Dan / Seattle

in reply to

Hi Dan,

Good to hear that things are getting a little better for Andrea. It's amazing how differently drugs work for each individual and it can be trial and error and while I'm sad she is taking a lot, I'm glad you have them on standby.

I had breathing problems recently and got a couple of epipens. I used to use them for allergies overseas but haven't had to in the UK.

But just knowing you have everything there and you know what to do if something happens again is reassuring and also hopefully lessens stress for you all.

Wondering when you will get your honorary M.D.

And Sending hugs to all πŸ€—

in reply to

Amallia.

Swaying between the conscious and not right now. My medical education is intact as long as you continue posting. You should teach medical school I think...

The firefight is in flux. Finally able to perform due diligence in the science but only in small takes right now. Daughter's stability remains of concern to us all as flares are cycling.

Histamine involvement in physiology is now showing at the home theatre. The preview has been fascinating as I start to understand basics of mast cells, IgE binding sensitivity, degranulation processes, diffusion and function of the different H receptors. I had no earthly idea about any of this...

You have such great capacity to understand physiologic processes, I will leave you with one theory mulling about.

We have noticed flares can voraciously appear right upon waking and activity. Apparently, histamine production gears up to promote wakefulness. One thought is the antibodies may be circulating to attack as the histamine production cycle initiates. So, we wonder if preloading the antihistamines by interrupting the late sleep stage may help. I took this approach trial and error today by waking her to take meds couple hours before awakening for the morning. Then continued load-in during breakfast. The a.m. hours were marginally improved from prior day but had to continue topical steroids throughout. We will try again tonight with adjustment because histamine production stops during sleep.

Oh, the things I don't know.

Song of today:

"Teach Your Children" by Crosby Stills, Nash and Young released in 1970 on the album Deja Vu.

Family sends out love to you Amallia. Weakness rolling back in now. Take care of yourself. Be watchful on your breathing. I need to see about the mantras soon I think.

Dan / Seattle

Seaotter2020 profile image
Seaotter2020VolunteerFND Hope in reply to

Dan saying prayers for you and the family. Yesterday I got treatment plans for acquired angioedena . It includes Icatibant. If I need to go to the emergency room to ask for Berner or Cinryze. Have they suggested this for your daughter? I know you all hate hospitals and ER rooms as much as I.... Blessings upon your family and some peace for you all.

With lover and many hugs

in reply to Seaotter2020

Lauren.

Thank you for writing. I tackle just few message at one time.

Thank you for special information. We still struggling as attacks get to face but not as severe at moment as what ER had been seeing and described as angioedema.

I will note drug names and look at pharmacological. Best to have maximum arsenal available. The recurrence cycles are relentless. Still experimenting with what we have but know next trip in will find us in hospital for more specialized treatment.

Greatly appreciate your knowledge. Best ER can do is stabilize and keep airway open.

Much love and care for you

Dan and Family

cathys20 profile image
cathys20

Holding you up right now in prayer with love for all of your family. God is faithful and is with you all at this time, He never leaves us, He is Omnipresent. God BLess each of you, Cathy

in reply to cathys20

Cathy.

My friend. Our prayers find each other daily. His love is endless and you bring much peace and comfort by sharing His word.

May God Bless you this day Cathy. I am so happy for your gift.

Dan / Seattle

Lawley3 profile image
Lawley3

Wishing you and your daughter all the best Dan, as a parent also I completely understand how difficult it is to see your child suffering. Loving thoughts are sent your way and I pray for a speedy recovery for your daughter.

Best wishes

Louise x

kjkla85 profile image
kjkla85

Sending best wishes to your family Dan - just catching up on posts. Glad to see your daughter is resting and hopefully improving. May God bless you all this Easter x

salfnd profile image
salfnd

Sending All my love and Thinking of your family and sending best wishes.

All my love.

Sal xx

Hopeful40 profile image
Hopeful40

Keeping your family wrapped in a blanket of prayer.

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