Anyone with Central Pontine Myelinolysis
Posted , 49 users are following.
Hi anyone out there have any information on central pontine myelinolysis , my 26yr old son has been diagnosed with this condition. He has been in hospital for 6 weeks and spent the last 4 weeks in intensive care, he went into hospital on Christmas eve after having seizures to do with alcohol withdrawal the first couple of days he was doing fine then things started to go wrong. He started to loose his balance he started slurring his speech and was getting very confused. He then lost his ability to swallow then started to slip into a coma at which point intensive care induced him into a coma and we were told not to expect him to survive. A week later he started to come round and could breath for himself but could only use his eyes,3 weeks later and he can communicate by blinking his eyes can squeeze my hand with both hands can wiggle his toes and can understand everything we say to him. We know we have a long way to go and don't know what the long term recovery is but would be grateful for any info from anyone who has come through this condition.
4 likes, 280 replies
caroline87050 elaine04862
Posted
HI Elaine,
My name is Caroline. I have just come across this site and hope that you are still on it.
Like you, i am a mother who's son was diagnosed with cpm. It happened 6weeks ago. He was in a coma but out of it now. Can breath, use his eyes and move his head and one thumb.
If you're still here, i would be so grateful to hear how your son is, what worked or didn't work - and of course how you are!
My son is in the UK.
Hope to hear from you, and if not, somehow you will know you're not alone
Caroline x
gary44503 caroline87050
Posted
HI Caroline and Cleong, I'm so happy to hear the progress. Sorry we lost touch Cleong. In my case it was about 2 months until I could have water or apple sauce. They did tests for shallowing and I failed a few times. I was I rehab about 7 months until my insurance ran out. I can do most things to care for myself now.but still not in good shape. Probably about 60%.. Still horrible emotional issue. They say I have ptsd and full body nerouphy which I might have for life. Hope not. Just remember move slow Richards going to want a lot of answers but there aren't any. It is just a very slow recovery. Once again I am very happy with both the recoveries. Take care, Gary
caroline87050 gary44503
Posted
Gary, thank you for sharing. Hoping that Richard will have a swallow test next week. - it's so hard as you know, the thought of a simple drink is almost the only one he has! Fingers crossed....
I hope that your body improves much more Gary. Are you still having physiotherapy? Can a good healer help you with your emotional state? I am a Psychotherapist, Hypnotherapist and Shamanic Practitioner. To be honest the way i feel is best, for Richard, to assist his healing is Shamanic Healing. The shock and trauma that you have all found yourselves in!, i can't even begin to imagine, I know that this type of healing will be invaluable and will not re-traumatise.
Thank you again, sending warmest wishes
Caroline x
joe64679 caroline87050
Posted
How is Richard progressing?
Joe
caroline87050 joe64679
Posted
Dear Joe,
Hello! And hello to you all
Thank you so much for asking.
Richard was moved to Oxford Centre for Enablement 2 weeks ago. A brilliant place. Having 4 sessions for various things each day. He has started to swallow
and is now up to 3 pots of yogurt a day. All going in the right direction.
I had to finally leave him, now that he's where he needs to be. His, partner, father and sister all live in the UK so he will be fine. I arrived back in Canada on Wednesday night.
I'm hoping to have the opportunity to facetime with him once or twice a week. His key worker is looking to fit me in on his schedule
How are you all out there? improving , even if very slowly, every day.
Love to you all
Caroline x
gary44503 caroline87050
Posted
HI Caroline, that's great to hear. Pretty soon his going to wanted a whopper with cheese! At least that was my first choice. I Think it was because of the TV and I love hamburgers. As for me today is ok. A few days ago not so much. Welcome back to the time zone. I think were in the same one. Take care, Gary
caroline87050 gary44503
Posted
Good Morning Gary
So pleased today is a better day for you.
Thank you so much for getting in touch. Saw Richard yesterday via face time - a wonderful invention!. And will do so each week. He looked well and right now the centre are sorting out a proper chair for him and working hard to get him to where he can be. H is now up to 3 yoghurts a day
t feels very odd for me not to be there with him, but it is good to be back on Pacific time. My kids here need me now... no rest lol !
I'm face timing with Richard tomorrow and will tell him what you said.
Take care and i hope today is an even better day for you
Cx
gary44503 caroline87050
Posted
Awesomesauce, say hi from all of us. There's not many of us but we are with him 100%. Bye,
gary44503 caroline87050
Posted
HI EVERYONE? Hows everyone doing?. havent heard from anyone in a while? Myself i doing ok. i miss hearing from you all
caroline87050 gary44503
Posted
Good Morning Gary,
Glad to hear you're doing ok. I also have been thinking of you all and wondering how you're doing. Richard's progress has slowed right down. He still is unable to speak, walk, stay in his wheelchair for very long. But he can eat a little mashed food 😃 He is moving his left arm and fingers and is working on teaching himself how to use a keyboard to communicate with , an interesting voice it has! Tinny with an American accent - Richard is very English with a deep voice, so it does make us laugh. He is still in the Oxford Rehabilitation centre, so very grateful for that blessing. He needs care around the clock so there is no way he can go home. The next step is in discussion and it looks like a mid-way house, where 3-4 people reside with 24hr nursing care in residence also. I am now back in Canada, but Richard and i face time everyweek and i am in touch with his team and family constantly. Richard is amazing, i cant believe that he, and it seem, you all handle your respective situations with such grace.
Sending love and blessing to you all, and again thank you Gary for getting in touch,
Caroline x
alison_74676 caroline87050
Posted
Hi everyone it's been a while. Even though I don't post much, I often think of you all & hope your keeping well?
Caroline, from your post of Richard, although it seems things are going slowly . It would seem he has made some progress,which is a joy to hear.
Although for you, I'm sure you would like to see him home. I'm positive that day will come soon enough. You don't need me to tell you,it's a very long road, & no-one can know for sure how much progress will be made or how quickly.
The fact Richard is able to move at all is wonderful, and in your darkest moments--remember this! Take care Caroline, please give my best wishes to Richard, and all the family xx.
HELLO GARYX
gary44503 elaine04862
Posted
HI Caroline, I get no help. My insurance ran out. We tried everything but no one will see me. No money No help! I'm just winging it. It's just me and my 19 year old daughter, oh well, what happens happens to me. I'm just glad Richards has great support. Bye, Gary
michael_82772 elaine04862
Posted
Elaine, go now to the hospital and request a copy of your sons complete file including imaging. While the alcohol has played a major role you should search for records on his sodium level on admission and each subsequent lab for sodium levels. If his sodium level was allowed to rise too fast that could be the cause of his condition. My wife (non-drinker) was admitted for kidney failure but doctors allowed her sodium to rise from 114 to 133 over a ten hour period. That is a 19 mEq/l rise in ten hours when it is not recommended to exceed 8 mEq/l in 24 hours. She is on a breathing machine at night, has trouble walking, eye site, and has bi-lateral tremors in her hands and arms. She almost died twice during a two week ICU stay. The doctors should have been checking her sodium level every two hours (per the critical care doctors orders) but did not. Two days after the too sudden sodium rise she had a seizure and her condition crashed. Four days later she had another seizure. Despite having a video of her first seizure doctors have minimized her symptoms suggesting she didn't have seizures despite the video, putting her on seizure medication,and restricting her driving for six months. MRI's now prove the damage done as a result of the too fast sodium rise. In her case it appears areas of her brain outside of the central pons ere affected or extrapontine myelinolysis. We will pray for your son just remember to question everything in your sons treatment and above all get those records. By law they have to give them to you at no charge. Then get a second opinion away from the facility treating your son. Good luck and God Bless
Cleong elaine04862
Posted
How is everyone doing?
My dad recovery progress has slow down. N himself seems stressful. He sleep most of the time now. N seldom exercise.
Think how can I motivate him.
caroline87050 Cleong
Posted
Hello Cleong,
Thank you for contacting us. It is amazing that your father has progressed so much much and so fast. Maybe he just needs this time to rest and gain a little equilibrium. Motivation can only come from within. You know you have and are doing everything you can to help and support him.
I know it's distressing, but if you can, just be thankful for where your father is in his life journey.
You take much of yourself! Sending love and blessings to you both
Caroline xx