neuroleptic malignant syndrome

French

Hi everybody 

2 days ago, I learnt something new unfortunately. This road is definitely paved with many difficulties. 

My partner who clearly suffered from moving legs syndrome saw the neurologist who decided to try a new treatment because she said olanzapine wasn’t well adapted (everything was however fine during 2 months). She put him on rispedal. About 1 week after he became  aggressive, with sudden changes of behavior. The MC had him admitted to the clinic. They investigated with Scan and blood analyses. His CPK level was very high 1950. This lead them to a neuroleptic malignant syndrome. 

The psychiatrist their considers that now his medication is so delicate that he can’t stay in a MC (in particular this one where the medical coordinator is incompetent, considering regular mistakes and shortage in medication) in Tunisia and he should come back in France.

So I am organizing his sanitary transfer with the help of my insurance company. I should go their in 6 days, still don’t know if he will be repatriated before or after… where il will be after that (certainly at hospital emergency)…

We are back to point 0 has we say here…

May flowers

Sorry you are dealing with this, we say here “back to square one”.

Did they rule our iron deficiency for the leg movement? Here is some info on it, maybe something to ask the doctors https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html 

I believe my FIL has restless leg syndrome too, he cannot stop moving his legs, day and night - he slaps his legs and says something is crawling on them.  He seems to be responding to additional iron in his diet, but it is slow going. I do iron in the form of blackstrap molasses as it is non constipating (an issue for him). 

Quilting brings calm

Wow,  I’ve never heard of this disease,  the symptoms of which  ( according to the internet) don’t sound like restless leg syndrome  at all.  Although he could have RLS on top of everything else. 

My spouse( no dementia) has had RLS for over 20+ years.  Treated with generic Requip, then a nighttime dose added.  A few years ago it got really bad.  A neurologist added a Neupro patch and a daily dose of Horizant.  Horizant is a expensive form of gabapentin that does not have a generic.  

My spouse has has a CPAP machine for about a decade( prescribed by his family doctor). A few months ago a  pulmonologist who also does sleep disorders determined the CPAP isn’t the right machine for my spouse.  He’s waiting on a BPAP,  which the doctor thinks will help his RLS as well as a host of other things aggravated by poor quality sleep.  Blood work also indicated he was low on iron.  He started out with 1 ferrous gluconate 324 a day.  That didn’t bring the iron level up enough, so he is now on 2 a day,Blood work to be repeated in a couple months.  His neurologist has bowed out in favor of the pulmonologist since RLS was the only reason for o the neurologist.  The neurologist felt the pulmonologist/sleep disorder doctor  could handle it.  

My spouse went on Medicare in July and Horizant is not covered and is over $500 a month. My spouse and the doctor decided to take him off of it rather than get a manufacturers discount card.  He’s doing pretty well  so far.  He’s trying to get off the Neupro patch also as both the neurologist and the pulmonologist feel he’s on too many medications - 11.  5 for diabetes, 4 for RLS( that’s counting the Horizant) 

My point? Have his iron level checked.  The pulmonologist/sleep doctor wants my spouse’s to be at 75.  We found  our about the iron level and the BPAP as a coincidence of going to this new doctor for a cough - which he determined was caused by his blood pressure medication.  This new doctor is amazing. 

M1

So sorry French.  Neuroleptic malignant syndrome is quite real and can be fatal.  I can imagine it's too difficult to monitor this from Tunisia.  I hope he can be transferred directly to a hospital near you, stabilized, and then admitted to memory care in France.  That is, assuming that he gets over this without permanent kidney or muscle damage.  Please let us know how you are when you can.  I'm sure August is a difficult time to have to do this.

JoseyWales

French, I'm so sorry for this new problem. It sounds scary. And to have to handle all this while so far apart must be so very hard.

How does placement work in France when he comes back? Do you have somewhere you think he might be able to go? I know there was a facility he was in before returning to Tunisia, could he go back there? If I remember right it wasn't nearly as nice as Tunisia and had lots of people who were much older, but maybe he won't be aware of the age of the others anymore? That's the case for my husband.

Ed1937

French, I'm sorry. Neither of you needed that. I hope things progress well for you.

Jo C.

French; I am so very sorry for what is happening.   Neuroleptic Malignant Syndrome is a very dangerous condition as described by M1.  It can indeed be life threatening and can lead to organ damage including organ failure.  This condition explains so many of his physical symptoms as well as changes in his behavior.  The poor man; so much suffering.

Getting him back to France as soon as possible and having him brought to a hospital is now critically necessary.  I can understand and imagine how difficult and complex arranging all of this is; I send to you very best wishes that all will be able to be done quickly and with reasonable ease.

Let us know how you are and how he is doing, we will be thinking of you and we truly do care.

J.

French

Thank you for your kind replies. Yesterday I had the emergency coordinator. He told me that my partner had a light neuroleptic malignant syndrome. So no muscle damage. I believe he was sent to the emergency on time thanks to the other resident spouse (my spy) who insisted that he must be admitted to the hospital. He had some kind of madness moments such has he never experienced before.

he can’t be transferred in a regular flight, he is too agitated and the pilot wouldn’t accept him.

Today I have to go to social security to have him re-admitted . Without that he can’t be transferred because no hospital will admit him.

Yes here in august everything is very slow. I guess they will ask me for a letter from his family doctor who is on holidays, the same for the neurologist. I am decided to laying siege to their offices till I obtain what I need. 

After ? He will be in the hospital and as they will want to discharge him, they will help with placement. At this moment we will be in September it will be easier. What is sure is that we won’t have a place in the best MC I selected.Not at first.