Need help - severely ill young person

xcell

Always looking for new knowledge and options!
Messages
78
Likes
127
Location
Germany
@Janet Dafoe (Rose49)

In our family we have a very severe young person.
He can't sit, we can only feed him with fluent food, he doesn't tolerate light and even quiet sound makes him worse.
Can someone tell us treatments which could help him even a little bit?

In old pictures Whitney's needs eye protection and can't sit.
In the new ones he can look around and sit and doesn't need eye protection even outside.
He looks better.
Does someone know Whitney's current treatment?
 

crypt0cu1t

IG: @crypt0cu1t
Messages
364
Likes
873
Location
California
@Janet Dafoe (Rose49)

In our family we have a very severe young person.
He can't sit, we can only feed him with fluent food, he doesn't tolerate light and even quiet sound makes him worse.
Can someone tell us treatments which could help him even a little bit?

In old pictures Whitney's needs eye protection and can't sit.
In the new ones he can look around and sit and doesn't need eye protection even outside.
He looks better.
Does someone know Whitney's current treatment?
It really depends on what the root cause of your illness is. I was on in the verge of suicide, bedridden for 4 months and seriously sick but after IVIG, I've gone back to work part time, see friends regularly and function at about a 7/10.

It's not guaranteed to work for everyone though, like I said, it depends on the cause of your illness.

Has he had extensive auto antibody testing done? I didn't think mine was autoimmune until my dr found AChR Antibodies.
 

perrier

Senior Member
Messages
942
Likes
1,883
It really depends on what the root cause of your illness is. I was on in the verge of suicide, bedridden for 4 months and seriously sick but after IVIG, I've gone back to work part time, see friends regularly and function at about a 7/10.

It's not guaranteed to work for everyone though, like I said, it depends on the cause of your illness.

Has he had extensive auto antibody testing done? I didn't think mine was autoimmune until my dr found AChR Antibodies.
Are you able to provide more information about how sick you were and who your physicians were and what they treated you with.
 

Belbyr

Senior Member
Messages
459
Likes
1,077
Location
Memphis
@Janet Dafoe (Rose49)

In our family we have a very severe young person.
He can't sit, we can only feed him with fluent food, he doesn't tolerate light and even quiet sound makes him worse.
Can someone tell us treatments which could help him even a little bit?

In old pictures Whitney's needs eye protection and can't sit.
In the new ones he can look around and sit and doesn't need eye protection even outside.
He looks better.
Does someone know Whitney's current treatment?
Have you been able to find a CFS doctor? Are there any drugs in the past you have tried that offered any help? I know how he/she feels to an extent and I'm sure many people here do as well. :(
 

valentinelynx

Senior Member
Messages
916
Likes
2,291
Location
Tucson
In old pictures Whitney's needs eye protection and can't sit.
In the new ones he can look around and sit and doesn't need eye protection even outside.
He looks better.
? Not sure if you're right, but perhaps I'm unaware... what "new" pictures are you referring to? There are photos posted fairly recently that are of Whitney before he became severely ill. I certainly would be delighted to hear that Whitney has actually gotten better!
 

debored13

Senior Member
Messages
2,002
Likes
2,567
Location
Vermont, school in Western MA
It really depends on what the root cause of your illness is. I was on in the verge of suicide, bedridden for 4 months and seriously sick but after IVIG, I've gone back to work part time, see friends regularly and function at about a 7/10.

It's not guaranteed to work for everyone though, like I said, it depends on the cause of your illness.

Has he had extensive auto antibody testing done? I didn't think mine was autoimmune until my dr found AChR Antibodies.
This interests me a lot Bc I’m similarly desperate and haven’t had good testing for autoimmune stuff sone
 
Messages
452
Likes
1,133
? Not sure if you're right, but perhaps I'm unaware... what "new" pictures are you referring to? There are photos posted fairly recently that are of Whitney before he became severely ill. I certainly would be delighted to hear that Whitney has actually gotten better!
@xcell Photo's can be deceiving. Whitney is still as sick as ever. It is my understanding that no treatment has made him better. He has his own thread if you would like to read more
https://forums.phoenixrising.me/threads/whitney-updates.47052/
 

taniaaust1

Senior Member
Messages
12,845
Likes
15,065
Location
Sth Australia
@Janet Dafoe (Rose49)

In our family we have a very severe young person.
He can't sit, we can only feed him with fluent food, he doesn't tolerate light and even quiet sound makes him worse.
Can someone tell us treatments which could help him even a little bit?

In old pictures Whitney's needs eye protection and can't sit.
In the new ones he can look around and sit and doesn't need eye protection even outside.
He looks better.
Does someone know Whitney's current treatment?
Hi, I was as bad as what you are describing there (except I could still eat solid food but I really struggled to chew and would fall asleep while tryng to eat so could not eat a full meal).. also was experiencing paralysis, seizures at noise (eg a lawnmower being used outside was not tollerable), and pain EVERYWHERE (sheets and clothes on me where hurting, I could not bear being hugged or touched.

I was like that for about 9moths where I was bedridden and usually could not even walk to the toilet or get up to get myself a drink. My daughter was having do near everything for me (when I ate which was only once a day as I was too sick and exhausted to eat more often. I was feeding myself with my hands like a toddler does as I lost ability to use a knife and fork as my hands would shake too much when trying to use them and feeding myself was also quite exhausting (trying to get that fork into the mouth, lifting an arm over and arm and getting the arm right was terrible). Also was easier to eat with hands when one can not sit up.

I was actually going comatose for up to 3 days at a time where I would not wake, I often went into a hypersomnia state when that sick. To communicate at times I was having to use like a basic sign language as I lost my ability to put sentences together and my words were coming out often garbled. (consider if your son using simple hand/finger signing to indicate his needs could help.. talking is exhausting). I used to point to my mouth to indicate I want to try to eat or form the shape of my hand holding a cup and bring it up to my mouth to signal that I needed a drink.

So I'd like to let you know I recovered from that state and about 5-6 years later with very slow improvement I reached a full remission which I was in for 2-3 years (unfortunately then caught then a virus going around and ended up sick again). So I hope you and your son do not give up hope, its possible to recover from the most shocking states, it probably is not common but its possible.

My recovery was due to trying to avoid anything which crashed me even more eg no having the lawn outside cut by someone as that would further crash me (into days of not being able to wake up), staying in the dark room, staying away from noise or people talking etc etc. Even at very bad states of this, there are things which can be done to protect the little health a person has left.

I suggest as little interaction with the ME severely sick as possible (as long as they don't mind that, I think less interaction is relieving as stimuli is hard to handle and causes further crashed states eg he gets sicker with very slight noises... cause it's still stimuli and it makes one brain work more, even a whispered question can cause one who is very sick with ME to crash more due to effort in trying to understand, think up an answer and then respond).

One thing which was very bad for me was music, even quiet music, as it was brain stimulation and the beats in music were way too much for my head/brain to handle. One's brain wants to follow noise but its all too much. Complete quietness is a relief to have to a severe ME person, its the only way the brain can try to rest.
 
Last edited: