Our son has a rare condition "incompatible" with life.We do not know the diagnosis, can anyone help?

Question

The doctors cannot find a diagnosis, so they put him in a classification based on outward appearance.. calling it something like "pheno-shokur" sequence, but i cannot spell it correctly. I cannot find any education, or literature, or any other information on it at all. How can i learn more. We are very strong in our faith in God, and believe that He will heal our son. It is alot of healing required, because our son cannot hardly move on his own at all, and relies on a ventilator and a feeding tube to keep him alive. The doctor recommends that we pull the plug because he says there is nothing that they can do. We need prayers and testimonies of similar experiences for encouragement. Can anyone help? Your prayers are appreciated.

Answer 1

i can tell you that there is a doctor that knows all about this illness he knows the cause the results of it if left un treated and the cure.
will i pray for you your family and your son ? yes.
i dont know the doctors plans for treatment of your son .
this doctor i know is kind of strange he doesnt say much and some times he comes fast and some times slow .
he has never failed to make a house call or visit a patient .
i think you know that the doctors name is GOD.
some of what i shall ask for from him to give to you is trust .
Will a miricle come and cure your son so you can take him home i dont know.
Will a miricle come to that room and touch your son yes that i do know .
we all have to have trust in the plan . i havent the slightess idea why your son got sick and some other kid didnt . no one does.
god sure he knows but he doesnt seem to say much .
should you pull the plug so to speak and let your son strave or sufficate . no you shouldnt do that now any more then you would if he were health and outside playing with his friends.
there is a fine line in a matter such as this . and lots of questions
you must ask yourself have the doctors said they have done all they can to heal my son. if the answer is yes then i hope you understand they dont mean your son harm when they say to do this removal of a feeding tube or a breathing tube . they are saying we can do no more we dont know of one more thing to do . some of them pray i am sure so really as far as all there training and knowledge goes they have done all they can .
you as a parent now must ask yourself some hard questions
i am sure you know that sometimes a person on the ventolator will not die when it is removed . most often when the doctors say that is what will happen they are right i am sure.
there are more tubes and things that can be used in time
if your sons heart fails what are you going to have the staff do .
i suggest to you that you continue to pray not for the miricle you want but for the miricle god has in store.
your miricle and his might be the same .
but i think at this point it is looking like the miricle god has planned is not the one you would pick if it were up to you .
i know that what you want for your son is the ability to leave that bed walk run talk play smile and have the best of everything.
that is what god has planned for your son too . he plans that for all of us. but he goes out of his way to make it extra good for children. . so if your son is healed in the manner you hope for then ok . you know that you are to pray that all that is best for your son take place . pray that the lord will remove from your son all pain all sadness all hungry and all thirst. pray that your son will want for nothing and that he will now or years from now have all of this. why becase you love him god loves him and it is the fathers will.
ask the doctors there for the spelling of the illness and what information they have or know of that you can see .
pray for healing but understand that healing is not always done where we want it . if gods will is to move your son from that hospitail to his then you dont have a thing to worry about god is the greatest doctor there ever was or will be. he will heal your son either here on this earth of there in heaven . either way your son will be healed. you know that.
pray not just for your son but for yourself ask god to help you to understand even just a tiny bit more
i tell you know that i am a person who has had the great gift of seeing an angel of the lord. my mother saw this angel at the same time as me . my mother was ill and dying . my mom died
but i have not any worry that heaven is not real that the angels do not come to bring the children of god home .
please belive this with all i am or ever will be i tell you i saw the angel so its all real .
ask god to help you to understand when you are to say stop to the doctors. the hospitails have a chaplin ;or a minister from outside may come if you ask and with him i suggest you consider what to do regarding when to passively accept the outcome and what it is . may the lord help you keep you guide you strengthen you and comfort you may he help you know more then most times to accept his will her on this earth as it is in heaven .
amen

Answer 2

Have you gotten any additional opinions on his condition? I would stay clear of a doctor that tells you to "pull the plug" on your child, especially when the doctor doesn't even know what's really wrong with him! Was your son born this way? How old is he? I am sorry that I do not have any information or answers regarding your son's condition. The one thing that is for sure, your faith in God will take you right where you need to be! Whatever happens, don't ever lose sight of God. Have you looked into any medical websites? Any phone numbers/hotlines for medical assistance? There is a "nurse line" that gives advice at one of the local hospitals here. They can provide referrals, as well as answer any current health concerns that people have. Maybe call a hospital and ask if they have anything like that? Did you do a general search on "rare childhood illnesses"? How about any of the nurses or techs that do any of his home health? I am assuming that he has home health since you mentioned he is tube fed and on a ventilator. Does he have a Physical Therapist, Occupational or Speech Therapist? Maybe they have seen or heard of a similar condition? Keep asking. Anyone and Everyone. Post a notice in your church bulletin. I will remember your family in my prayers and will let others know to pray as well. Don't give up, whatever you do. You will find answers. They have to be out there. If possible, keep posting and keep us informed. I am new to this site, but will remember your screen name. God Bless you and yours.

Answer 3

Step one: Get a second opinion. (Consider getting another doctor. This one seems to have given up.)
Step two: Find a teaching hospital. It increases the odds that someone will be curious enough to look further before pulling the plug.
Step three. Find a place... clinic, hospital, specialist, who has an interest in whatever this syndrome is. Get the name of the condition right and start searching. Be aware that there are data bases that we peons can't get to but doctors can. One of these data bases is associated with Harvard Medical School, another with Johns Hopkins Medical school.
Assuming your son is a child, another approch is:
There are hospital that step up to the tough ones.. that is "Children with terminal diseases."
St Jude Hospital in Memphis.
Kennedy Kreiger instiute in Baltimore.
Children's Hospital in Washington
The Shriners of North America run 22 medical facilities in North America.
Keep the faith. And keep on swinging.

Answer 4

I'm a nurse and a Christian, and Youth Sunday School Teacher. I strongly believe everything happens for a reason. God has a divine plan for every ones life including you son. I think you shouldn't give up but know always your son is in God's hands. I will be praying for you and your family. Also I have worked in the hospital for many years and I have seen it all. People who you thought would die didn't, and the people who we least expected to die did. I know this is a very difficult time for your family, but hang on, God hears you and He knows everything. Nothing we do escapes His eye. God knows what you are going through. Be strong and never give up no matter what happens. Remember God is truly in control. Watch this video and be blessed. www.mayyoubeblessedmovie.com

Answer 5

can you tell me more about this condition is he breaking out in like hives or any thing all over even his face if not if you could give me more detail maybe i could help because my nephew laid in children's hospital for almost 2 months he hurt so bad he could not hardly move an he cried a lot he was week also he ended up having staff infection in his hip bone and it took a long time for him to get back to normal these doctors you are using now apparently do not have a clue because they are telling you words that you don't understand doctors that do that in my opinion need to get off the case and find a new doctor that mite know something about this condition i really hope this helps please confirm me if it does or not an ill pray rite now lord be with this family an help them thru this trying time an lord please help this little boy to heal an live a long and very happy an productive life amen!!!!!!!!!

Answer 6

I would try to find the correct spelling then go to WEB MD, I will say prayers for you and your loved ones. God Bless

Answer 7

I will remember you and your son on my knees tonight. I wish I had more that I could say...I can only say that God loves your boy and He values him as much as anyone. God bless and give you strength.

Answer 8

That's the first I've heard it...but I'm guessing Buk..

Answer 9

oh gosh! I'm so sorry, I have no knolage about this but I'm going to pray for you and your son. God Bless

Answer 10

Please call the doc or the hospital and have them explain this condition to you tonight -- if they are asking you to make a life or death decision, they need to make sure you know everything possible.