Mis diagnosed with Bi-Polar

[momgotchat]

Hi,

I believe my mentally disabled adult son has been diagnosed with Bi-polar disorder. My son became disabled at 2 1/2 after his brain surgery to remove a cancerous tumor (Medulla Blastoma).  After surgery, over the course of a year he was diagnosed with with; Mild mental retardation, Scoliosis, Cataracts, Neurological disorder and Hypothroidism.

Growing up he had a great pediatrician that was very selective about giving his patients medications.  He worked closely with my sons Neurologist(s) and other Dr's to make sure he got the correct medications and not getting anything that was not necessary. He had a great dis concern for Doctors who over medicated their patients.     After his 2 years of cancer treatment was completed and he was in remission, the only medications he was on throughout his childhood up until 4 yrs ago was his synthroid and his growth hormone shot, eye drops and vitamin supplements for iron and calcium which were taken daily.

His pediatrician warned us that when he reached adult hood and we considered putting him into an assisted living type situation that we needed to be very watchful and concerned about medications and diagnoses that my be made on him.  He warned that unfortunately a lot of disabled adults entering into assisted living homes get misdiagnosed and put on many medications that they don't need.  And that pharmaceutical companies pressure doctors into prescribing medications, and a lot of patient end up on med's that are not necessary.  He warned me to be careful and not let this happen to my son.

I now I am afraid that this has happened so my son.  He entered into by his own choice an adult 18 bed assisted living program.  Within a year he had been pu ont about 10 or so medications, several of them being allergy meds.  Since he has been diagnoses have been added including; Asthma, Migraine head aches, Severe Restrictive Pulmonary Disease, Constipation, Depressive Disorder, Bipolar Disorder, and Failure to Thrive.

The medications that have been added to the above meds since living in this home are: Ferrous Sulfate, Loratadine, Ranitidine, Mirtaxapine (for appetite stimulant) , Butal/AOAO.CAFF (as needed), and Cyproheptadine.  He used to have Abuteral/Atrovent treatments, but they have been discontinued.

My concern is for the recent Bipolar Disorder.  My husband and I have been medics for year and dealt with many Bi-polar patients,  We feel we are very familiar with the disease at it's various levels.  The symptoms that come with this disease even at it's lowest level do not describe my son. He has been depressed in the passed because he does not want to be where he is.  But I have never seen him does display the classic symptoms of psychosis and up and down mood levels such as he has been diagnosed.  

My son has been tested and his IQ level is 53.  Part of his diagnosis came from questions asked directly asked to him.  They told me that my son said he had "racing thoughts", see's things and hears things that are not real.  When I interviewed my son with the same questions in a non-suggestive way, he did not know what "racing thoughts meant.  He described it as "I'm always thinking about running away from this place".  When I asked him about seeing and hearing things.  He says, "sometimes when I get up to fast I get dizzy and if I'm standing in front of someone it looks like they have more than one head like overlapping", and "I see like whiet cloudy spots"and "sometimes it sounds like I have wind in my ears like echoing" .  My son has frequent ear infections, and both of his ears are constantly packed with hard wax (not covering ear drum) and getting irrigated on a regular basis. The irrigation does not remove all the wax.  I believe the cataracts explain the white cloudy spots, and the ear infections explain the getting dizzy (equilibrium balance) and the wind like noises in his ears.  He is also on various types of medications that I believe may be contributing so some of his symptoms.

My son does show depression because he does not like his living situation.  Before entering into this living situation he lived with me and he worked out in the community, working at Taco bell, Pizza hut, a local grocery store, and he was highly  involved in sporting activities, camping and outdoor community activities with his like peers.  He was always busy doing something.

When he entered into his current living arrangement, all of this was taken away from him.  He sits a lot  in his room and listens to music, plays video games and watches TV.  He was no longer allowed to work out in the community, not involved in Special Olympics sports after numerous request,  and involved in very few outings with his peers.  He was sent to work in a workshop putting together nuts and bolts and shredding paper all day.  This became very old and depressing for him.  He has expressed his feelings and attitude about his situation at all his annual reviews.  They have not done much make his situation any better.  So his attitude has deteriorated and his anger has escalated over the past year.  He has a few peers at work that he says are constantly bugging him and making him annoyed.  This causes him to yell at them.  Some of the staff eat his food that he brings home form eating out and this irritates him, causing him to curse at them.  He does not like the staff to watch him take a bath, he feels violated. So as a result sometime he refused to take a bath.  

So his Bi-polar diagnosis has been based on this ongoing situation. He comes home with us every weekend.   He does not display any of these behaviors at home.  We've had him home on vacation for over weeks at a time and he has never displayed up and down moods, depression, yelling at his siblings etc.  He is his old go happy self.  And as soon as he goes back to the home, he starts almost immediately showing these so called Bipolar symptoms.

I'm am just not convinced that he has Bi-polar and Psychosis. If he had bi-polar wouldn't  he continue to have symptoms when he was at home with his family?  They want to put him on Risperdal, and I ahve refuse consent.  They previously wanted to put him on Mirtazapine  but I refused consent.  Later they introduced it as a appetite stimulant so I consented.  He's been on it for a year, but has lost 10 pounds, and they don't want to take him off.  I think they want keep him on it for a psychotropic med.  He is also recently started another appetite stimulate, Cyproheptadine.

Do you think he was mis-diagnosed?  And should I take him off the Mirtazapine?  I understand he has to be weaned off gradully, so what is the safest procedure for doing this?

Thanks for any information.
Sandy
Concerned mom

[Xila31]

I don't know if there is a doctor forum specifically for bipolar but I think there is an ask an expert or doctor forum on medhelp. But, I think even over the internet a doctor can't rediagnose your son. If you really believe he is misdiagnosed try to find help in your community.

[momgotchat]

Sorry, I thought this was a Ask a Doctor forum.  That's what i thought I clicked on hmm.  Is there a forum for a doctor I can copy and past this too?

[ILADVOCATE]

I'd say the best thing is for him to be in housing that is in the community. There is supported and supportive housing where he would be supervised but still in an integrated setting. As for what medications and what he doesn't in some facilities they do overmedicate people. Have him see an outside physician and psychiatrist and ask them if they agree with all of the medications he is on and why. If there is any resistance from the facility there are protection and advocacy centers in all states for a person with a developmental disability. Only a doctor and psychiatrist could say what his exact diagnosis is and what medications he needs but if his functioning overall declined when he entered the facility then that would indicate they are doing something wrong.

[Xila31]

This is very hard to answer, really. I mean on the one hand it sounds like he is depressed due to his living situation. From what you explain it sounds like there are some serious problems going on at his assisted living facility. If it were my son I would have the facility investigated, just from some of the things you have said.

It sounds like his job is depressing, but it sounds like he is depressed, very much so. Whether or not this is caused by him living in this place or clinical, it doesn't matter. I think maybe it is not a good place for him.

As for bipolar, it is hard to say. With someone in your son's situation his mood swings seem normal. Like if a little kid is unhappy they can have drastic mood swings. But, I would say that really your best option is to get him to a psychiatrist who is not only good with bipolar but also with bipolar people who are also disabled similarly to your son. Unfortunately none of us here are are doctors, so we can't really know if he is misdiagnosed or not.