My son is slipping away

My son, age 20, started having severe neurological/psychological symptoms around Nov. 1, 2008. He was going to college and living in a town 30 miles away at the time. His ceruloplasmin test this month showed a level of 12.4, but no KF rings, and we can't get a good urine test. Here are his symptoms and behavior, I will try to keep this brief:
11/2/08: He came home. He said his friends had told him he “needed to go home, he needed to be around his family.” He was tearful, distant, agitated and explosive and appeared to be in extreme emotional pain. He lacked eye-hand coordination and could not split wood. He ranted. He had dark circles under his eyes and was losing weight. He could not answer questions and did not understand them.
11/8/08: He was quiet and did not follow conversation. He barely spoke. His actions were methodical.
11/9 - 11/21/08: He was either extremely agitated or “blank” and could not converse in person or on the phone.
11/22/08: He was quiet but appeared angry for no apparent reason. He was unaware that he was saying things that did not make sense. He seemed “trapped,” tearful and indecisive. His eyes were involuntarily darting back and forth horizontally. I looked it up on the computer and discovered it was referred to as “nystagmus.” He had not showered or changed clothes since the day before, and he has always been very diligent about his personal hygiene.
11/26/08: It took him 8 hours to drive home from San Jose (a 3-hour trip). He said many things that were illogical and out of context with the situation.
11/27/08: He was frantic, throwing all of his clothing into garbage bags. He alternately screamed, yelled and cried. He could not understand questions I asked him. He repeated some questions back to me. He was still losing weight and had very dark circles under his eyes. When he wasn’t yelling or crying his expression would be blank except for frequent anguished grimaces. His face would freeze in agonized expressions. He asked me if he was dying.
11/28/08: His expression had deteriorated to a very flat affect most of the time. He was agitated but walking stiffly. He would sit motionless with tears running down his face. When spoken to he could not answer and said only a word or two all day. He repeated some of his actions methodically. His expression would be blank but there would be tears pouring down his face. He would frequently have an agonized grimace frozen on his face. No one understood what was wrong and he could not explain and was unrecognizable. He had dark circles under his eyes, was thin and could not talk. He cried a lot. He stayed close to family but could not engage in conversation.
11/29/08: 7 family members went to a nearby outdoor market. He followed like a robot. He could not speak when spoken to. He seemed unaware of the cold. He ate a big breakfast but halfway through tears started running down his face and continued for the rest of the meal. He was still stiff with a flat affect and silent for the most part. When we returned home, he packed up some of his things and left in his car. His dad sent him a text: “you need to come home.” He came home and cried. He later came into my room crying and shouted at me: “What is my name?! What is my name?!” He went into my bathroom, shut the door and screamed.
11/30/08: He was very agitated, confused, explosive and jittery. He would hold his head, bend over and scream. He had not showered. I asked him if he would like to shower, he did not. Simple things made him explode. He could not organize his things. I hated for him to drive but I couldn’t stop him.
11/2/08: His sister went to the city his apartment was in and talked to his friends. They said he was not doing drugs but they didn’t know what was wrong with him. He would be lying on the couch staring at the wall when they left the apartment and when they returned hours later he had not even changed positions. They said he would attempt to talk to them but could not speak.
I talked to his girlfriend. When he was down to meet her parents he could not answer simple questions they asked him (this had to be extremely distressing for him).
12/3/08: Took him to the doctor. He was capable of very little verbal expression. There was a long (4-5 seconds) delay when he tried to speak. He seemed to not hear us speaking to him much of the time. At the Dr’s office he got on and off the scale three times. He looked frightened. He could not answer the doctor’s questions. His weight had decreased to 168 pounds from 181. He had lost 13 pounds in the past month. The P.A. tested for every illicit drug known: negative.
12/5/08: He had an MRI. The MRI and all basic labs and urine tests came back normal, except for low B12.
The physician's assistant treating him believes it is depression but my son says he is not depressed. I believe his symptoms are more neurological. He does not want to take meds for depression.
12/6/08: His affect was flat. He could barely talk. He ate well, though. He could not carry on a conversation but he could play a game involving numbers. He did not speak all night.
12/11/08: Another visit to P.A. He could speak a little better that day, but still haltingly and with inappropriate delays. He could not adequately answer the P.A.'s questions. He denied that anything was wrong; he could not remember doing the things we told him about. Discussing his symptoms appeared to make him angry.
12/13 - 12/16/08: He seemed better for the first time in six weeks.
12/18/08: He had an EEG. When we entered the room for the test he asked me if he had a brain tumor.
12/22 - 12/23/08: He was “missing” common social cues, i.e., when to respond, etc. He did not appear to hear people speaking. He stared at one spot for long periods of time.
12/24/08: He was tearful, silent for the most part, and full of anxiety on Christmas Eve. His improvement has stopped and his symptoms are getting worse again. He had a shocking and terrible few days.
12/30/08: Back to the P.A. My son said the medicine made him feel “weird.” I stressed that he did not want to take psychotropic drugs unless every other possible cause of his symptoms had been ruled out.
12/31/08: He could not safely make the 3-hour trip to his girlfriend's parent's home so we drove him. He stared straight during the trip and spoke very little. He was having facial tics and at times his face would freeze in an odd expression or grimace for 10 seconds or more.
1/6/09: His movements were robotic and he did not appear to hear us much of the time when we spoke to him.
1/7/09: He became upset and hit himself in the head 6-7 times (slammed his right hand hard into the side of his head). He had done this back in November. Referral made to UC Davis Neurology Clinic.
1/8/09: His symptoms had decreased in the afternoon.
1/9/09: is closer to being himself than he has been since before his symptoms started! Could his symptoms be caused by inflammation due to a condition in his brain/spinal area? We had been giving him 600 mg. Ibuprofen twice a day for the past couple of days for muscle soreness.
1/10/09: He was again experiencing symptoms. He moved stiffly, could not hear us much of the time, appeared confused, and could barely speak. We had taken him grocery shopping. By the end of the day he could not push the cart. He would stand with his arms on the cart, his head down, and not move at all. He was experiencing facial tics. He would repeat odd gestures, i.e. removing his cap and wiping his hand from the top-back of his head forward. He could not speak and he had a confused and frightened expression on his face. I had to firmly link arms with him and lead him to the car.
1/11/09: Still very little speech and a lot of staring. He is still eating a lot. If we asked him a question we had to speak directly to him, make direct eye contact, standing close, for him to be able to listen and acknowledge us.
1/13/09: Took him to the Endocrinologist. He could speak minimally. His movements are stiff. Dr. is testing for Wilson’s disease and told me about the KF rings.
1/14/09: Lab tests done.
1/16/09: Ophthalmologist confirmed no KF rings.
1/17/09: His distorted faces (like someone with cerebral palsy) are happening more frequently.
1/19/09: Lab tests: Ceruloplasmin 12.4 (lower than normal, indicates Wilson's); Prolactin 14.4 (higher than normal)
1/20/09: Back to the Endocrinolgist. The urine test was ruined because they only gave him 1 jug and he filled it up within 20 hours; also they instructed us to refrigerate it and it was supposed to be room temperature. The Dr. ordered another urine test, with 2 jugs.
My son's short-term memory loss and confusion prevent our ability to capture 24 hour's worth of urine. He is suspicious of the jugs. He does not understand the test. He has now been referred to UC Davis Hepatology Dept. but they have not called me back yet.
He can no longer play board games: he thinks he is playing, but he is doing bizarre things and not really participating.
Has anyone experienced anything like this? My son cannot attend school and is losing his ability to complete tasks more each day. Right now he is helping his uncle with construction tasks but I know he should not be driving and may soon lose the ability to do so. I don't know what to do. I am going to call UC Davis Monday and beg them to see him sooner.
Can't they just perform a genetic test for the ATP7B gene?
It does appear that my son is being poisoned. Every few days we see new signs of the brain damage. His uncle gave him an extra set of keys and by the time he returned home he did not know where they came from or why he had them. His personality is almost gone and he never says more than a couple of sentences all day. His grimaces are now so frequent, and his walking so stiff, that he is stared at when we go anywhere.
HELP!! I can't believe we have to accept this day by day, and wait for these appointments. I am afraid his brain damage will be irreversible the longer we wait. If not Wilson's, then what?

By Judy_Nguyen
Posted March 7, 2009 at 2:44 am
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how is your son doing?

I just joined this inspire thing. I used to go to UCdavis and worked there as well, and that's how I know Dr Lorenzo Rossaro, he used to treat me while I was still in Davis. He really is a great doctor, and DR medici seems pleasant as well.

A few years ago, I was in the UCD hospital as well, and I was in fulminant hepatic failure. I had no clue I was that sick. I was actually just at UCDMC for a check up. and they admitted me right away, I had was in a daze, and still to this day I can't remember everything. but Dr Rossaro was sweet, and visited every day that I was in there, and made it a point that me and my brother understood everything that was going on with my labs, and with my treatment.

its scary being on the patient side, being in the bed, weak, not in control... I feel for your son, from the bottom of my heart. but I hope you are continuing to make decisions for your son, until he gets better, and can do so on his own.

judy

By pedsrn9999
Posted February 20, 2009 at 7:51 pm
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How is your son doing? Dimitri was readmitted to Cedars last night for severe pancytopenia. They put in another PICC line and he's getting platelets, packed red blood cells and IVIG. We went to our bi-weekly appt and when they saw the labs they admitted him right away. He had virturally no immune system left. ACK!
Shirley

By QueenofCopper
Posted February 9, 2009 at 5:21 pm
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God bless us all with our cross we bare.. Having WD myself, I thank God for everyday... may your son think positive always.. and please keep the faith!
Dee

By acutedistress
Posted February 9, 2009 at 8:46 am
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Pedsrn999,
You have a compelling way with words. And they are right on. I would do the same with the baseball bat! In this case the end would justify the means. I understand your love for your son - I love my son more than life itself - If I could just have an arm and a leg cut off and have him back I wouldn't hesitate to do it.

By acutedistress
Posted February 5, 2009 at 4:27 pm
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We took our son to the hospital on Tues., 2/3/09 and they restrained him (horrible indescribable experience) and he wet himself, thrashed and screamed for 10 hours and they could not give him any more sedatives without intubating him because they had given him max dosages and they were afraid his breathing and heart would stop. He had a liver biopsy (he was in tremendous pain afterward, we were not aware it was so painful), a DNA genetic test for the ATB7B gene, and a brain MRI with and without contrast. They did not get the urine because they didn't want to put in a catheter while he was thrashing and screaming - so no urine. We took him home late last night (2/5/09). 2 men: my husband and brother-in-law, were needed throughout to carry this out (not counting the 7 nurses and about 8 UC Davis policemen). There is no doubt we will have to do it again.
The doctor has completed 3 ceruloplasmin tests (all low range, from 12-18) but she wants one more diagnostic test (DNA or liver) before beginning chelation.
I will let you know the outcome. Thank you all so much for your caring advice. I wish I had read about Scribner's experience with her son before we left because we were not prepared for the agony of that experience and the whole family is traumatized. But now we know and next time should be a little less terrible.
Nothing in the world is worse than seeing your child terrified and confused and not being able to loosen restraints when they are begging you to do so.
I will provide updates as we get them.
Of course during both hospital visits the UC Davis psych team of doctors evaluated him and determined he could not provide informed consent so they allowed me to sign for everything. We are working on a solution to that so he doesn't have to endure those extra hours before they can test or treat each time.
Thank you all so much. I wish I could trade places with my son.

By QueenofCopper
Posted February 5, 2009 at 4:16 pm
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Bless u all!! this is exactly what i live.... I go to therapy and I Luv it! Take ur meds and talking always does a body good!!!
Denise

By yorksoldat
Posted February 5, 2009 at 9:15 am
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i think that your son discovered beer while away at college. Beer is heavy in copper. Maybe you can talk a Dr into giving him penicilimine or something and see what happens. You have to take what I say with a grain of salt because i'm no expert i've just been learning from the internet and treating myself.

By yorksoldat
Posted February 5, 2009 at 9:03 am
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I was starting to have similair problems but not so severe. I went on a gluten free diet. I also took a laxative. I avoided chocolate, coffee and other stimulants and found some relief. Sometimes there can be a buildup in the colon I think. I would also make sure he eats atleast one orange and one apple per day. I'm no expert but I think it's something you can try that shouldn't make things worse.

Good luck

By pedsrn9999
Posted February 4, 2009 at 3:53 pm
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This sounds like such a nightmare. Not only a I a mom with a kid with WD but I'm a nurse practitoner. I love my son so much that if I had to I'd physically restrain him myself to keep him in a safe place and have the tests done. When D got sick this time I was allowed to gown and mask with the team and I helped them intubate him and put in his lines. Sometimes that meant handing them supplies and other times it meant holding down his hands while they did unspeakable things to him. Yes....looking at the small picture, they WERE hurting him. Looking at the big picture....they were saving his life. Honestly, if I would have had to knock him out with a baseball bat to get him to cooperate I would have. That may sound mean and wicked but I have my son here and he's alive. Please get medical power of attorney and do what needs to be done to help him. He is incapable of consenting to anything reasonable right now. I am praying every night for you! {{{{hugs}}}}
Shirley

By SearchingforAnswers
Posted February 4, 2009 at 10:16 am
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I am very sorry that trying to get a diagnosis has been become so stressful for you and your son. I, too, became very frightened for my daughter when I read about the others' conditions. However, we need to keep in mind that helping the person to become stablized mentally will go a long way toward getting them to cooperate.
Whether your son has WD and/or copper toxicity reading these articles may help you to understand the effects that copper has on the body:
http://www.arltma.com/CopperToxDoc.htm and http://www.advancedfamilyhealth.com/copper_toxicity.htm#_MentalIllness
High copper, no matter what the cause, can cause changes in one's neurotransmitter balance. There is a simple neurotransmitter urine (one sample) test that can give you this information, and then targeted amino acid therapy can help. Phone consultations with a board certified psychiatric nurse practitioner are also available on this site: www.integrativepsychiatry.net/neurotransmitter_tests.html.
I sincerely hope this helps to alleviate some of your distress.

By McVeggie
Posted February 3, 2009 at 11:50 pm
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I am shock that you even considered bargaining with you son if he does this and that he can go home. I think someone mention on this post to get a power of attorney over your son. You should get that done fast if you want your son to live for another 20+ years. At the rate your son is deteriorating. I wouldn't even consider even negociating with him at all. UC Davis from my understanding got a very good medical team over there. He has to be in the hospital for the doctor to find out what is actually wrong with him. You need admit him even if he doesn't want to be admitted. So what if he move out of your house for good permanently afterward? At least you will have an ease mind that he will be leaving the hospital with a diagnosis and under a self sufficient term to able to care for himself. Your son clearly doesn't have a clear mind to make any decision for himself right now. So what he think you are making it all up? Be strong, be determine and be firm to do what you know will be best for your son. Before its too late to even save your son's life.

By Scribner
Posted February 3, 2009 at 9:26 am
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Your son needs to be hospitalized. You "lying" to him is in his best interest right now. I would not hesitate to tell either of my children a "white lie" if I knew they would get medical attention they needed. You took him home - you are right back to square one. The next time you take him to the hospital you will have exactly the same thing happen. I know you want to be kind, but he is hurting himself and you never know what he is going to do from one day to the next - you can't keep living like this - not only is it bad for him - it is emotionally bad for you. You talk about them retsraining him and I know you are scared for him - it is to protect him and get him the help he desperatly needs right now - it is not to be mean. The doctors/nurses will work with you in every way to make sure your son is as comfortable as possible. When my son came out of his liver transplant, they had him fully restrained, IV's coming out of both arms, one main tube in his neck with 5 lines that came out of it with tubes eveywhere and a tube in his throat to help him breath. He looked into my eyes and mouted, "I can't breath." I explained to him that it was a temporary tube and they would take it out when he could breath on his own. A tear rolled down his face and he kept repeating himself. My 2 sisters and I took turns repeating it an reassuring him as each of us turned away and burst into tears. That was indeed one of the most heart renching moments of my life - but it had to be done - he would have ripped out the tubes and IV's. You too have to make that decision - your son does not have the stability to make rational decisions that are in his best interest. No matter how hard it is - get it over with - take him to the hospital and have as many tests done at once as you can - tell the doctors to schedule everything they can in as short of period of time as they can. Even if a test comes back negative, it is one step closer to a diagnosis and the start of some sort of treatment plan. Him being home is not going to do that. You should take advantage of this opportunity to get the tests run. I continue to pray for your family each day.

By kjmon
Posted February 3, 2009 at 4:14 am
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My son was tested for Wilson's Disease by one of the best biogenetic doctors in the world for the ATB7B Gene. The doctors name is Dr.Silhoun Hahn and he is with Children's Hospital in Seattle, Washington. He is very familiar with Wilson's disease. They would be worth speaking to and could direct you to doctors in your area that specialize in Wilson's. My son came up negative, thank God. Dr. Hahn is one of the best! I pray that you find the answers you are looking for.

By acutedistress
Posted February 2, 2009 at 3:46 pm
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Dear pedsrn9999, reading your post made me nauseous with sympathy for you. I am so sorry - my heart bleeds for you. And I am so afraid.
On Thursday, Jan. 29th, we took our son to his appt. with Dr. Medici, the hepatologist at UC Davis, in Sacramento, 1 1/2 hour drive from our home. Right now regarding diagnosis we have nothing to go on but his low ceruloplasmin and neuro/psych symptoms. We attended our appt. and drove home. On Friday Dr. Medici put the pressure on at UC Davis to get our son a bed Friday night in their transfer center, the "Accelerated Access Unit." They wanted to admit him Friday night so their 3 teams of doctors (neurologists, hepatologists and psychiatrists) could do tests over the weekend, monitor his condition (blood, etc.) and do a liver biopsy under general anesthetic on Monday. General Anesthetic is not the norm for this test but Dr. Medici agreed to do it that way because we didn't know if my son could remain still for the 10-minute procedure (needle through the side) and lay on his side for 3 hours afterward (to prevent bleeding).
We spent several tense hours at home waiting for the call that UC Davis was ready for us while trying to prevent our son from leaving the house (I should have known it would not work). He left on his bicycle once but returned home when his girlfriend arrived. UC Davis called asking that we arrive by 8:30 p.m. My son didn't want to go to the hospital but we pressured him. We (my son, dad, I and girlfriend) left home at 7 p.m. We arrived at the hospital about 8:45 p.m. Friday night. As soon as we entered the room he asked when he could leave. He refused to put on the hospital gown. He tore off his hospital bracelets. He refused the IV. He refused the sedative. We tried to reason with him for hours: us, the nurse, his girlfriend, to get him to take an Ativan pill to calm his agitation. We thought if he calmed down he might then cooperate. His girlfriend is passive and this is over her head and she is really no influence, however he is calmer when she is present.
The nurses/doctors repeatedly told me they could not force him to accept any procedure or pill. So at 11 p.m. Friday night, since he refused all that was requested, we asked him to at least cooperate with the 24-hour urine copper test. Ideally they would have started it the next morning but we were desperate.
In order to get his cooperation to pee in the jug his dad and I promised him that he could leave at the end of the test, 24 hours later, or approx. 11:30 Sat. night. He refused. I broke down sobbing for awhile, and then I became angry. I told him I didn't want to wake up every morning wondering if he was going to die from a disease that is so easy to treat. I ranted and raved that we had been watching him suffer (and suffered with him) for three months and I'd be damned if he was going to stop everything here, when he had the very best doctors setting up a plan to help him. He was completely impassive to my pleas (normally my tears provoke him to tears) but he stopped trying to leave.
Because it was the weekend and the bed next to my son was vacant, the hospital allowed my husband and I share it. Th nurse blocked the bathroom door with chairs so he could not urinate anywhere but the jug. We lay awake all night listening in case he headed for the door. The night was endless; he was agitated and yelled a couple of times.
The four of us lay fully clothed on the 2 skinny beds all night. It sounded like my son and his girlfriend went to sleep (the curtain was drawn). The nurse took his vitals twice during the night and placed more hospital bracelets on him; he tore them off. I was astounded that the staff at UC Davis was so patient.
The next morning when he awoke he asked when he could leave. We reminded him that that he had promised to cooperate with the jugs in exchange for our promise that he could leave at 11:30 that night when it was done. He peed in the jug but stated he would not stay there all day.
His dad and girlfriend had to leave at 7:30 a.m. to make the 1 1/2 drive back home to bring my son's girlfriend to work from 10-1, and then they would back. The nurses offered to get a doctor's note for his girlfriend's work but she wanted to go to work.
At 7:30 a.m. Saturday it was just my son and me at the hospital. He became irate. He refused to eat or drink. I had to use the bathroom with the door cracked so I could make sure he didn't leave.
They told me the team of neurologists would be by between 9 and 10 a.m. to see him. He had already had brief consults with the hepatology team and the neurology team the night before; nothing could be started because he had refused all procedures and even an I.V., and they stated they could not force him and that he had the right to refuse.
I lay on the bed near the door, with the curtain drawn between our beds, because my presence infuriated my son. I could hear ripping and spitting; he was tearing his shirts (T-shirt and outer long-sleeved shirt) and spitting on the floor and window sill. I heard the buttons of his shirt hitting the floor and other sounds I could not identify. Without my son's knowledge, I texted my husband telling him I needed help ASAP.
My husband called my son's uncle, Rick, to come down. It would take Rick about 2 hours to get there.
Then my son got up and headed for the door. I stood in front of him (but not close) trying to calm him and get him to stay. He swore and turned sideways and raised his arm to strike the wall with his fist but I stepped in front of the wall and he turned away. I said "Stop! Don't do that!" and he stopped. Last year, he broke two bones in his hand due to hitting a wall. He would not see an orthopedic surgeon until after it healed badly and then he would not consent to surgery to repair it. He has never hurt anyone; he is completely non-violent to others but vents his agitation on himself.
He squeezed past me and left the hospital at about 8:55 a.m. Sat. morning in his T-shirt (ripped) only, no outer shirt and no coat. I told the nurse's station as I followed him out that I would try to get him to return but it might be awhile.
It was very cold outside and I had to jog to keep up with him. I noticed rows of red, raised blisters on his wrist that looked like something had been dragged across his arm or it had been caught in something. I later realized the marks were from his two (possibly more) successful attempts at pulling off the hospital bracelets; they are very hard to remove. At that time, however, I didn't know what they were and he would not answer me.
I kept up with him; the only reason we didn't get lost was because UC Davis was the tallest building around.
As he walked he kept spitting in anger. He would spit and let it run down his chin. I followed him for about an hour and 15 minutes until I coaxed him back. When we got back he refused to enter the hospital for another 30 minutes. I was freezing and he had to be cold. Eventually I asked him to please return to the room so he could use the jug. I told him I was cold. He went back to the room but did not use the jug.
We resumed our spots. Between 10:30 and 11:30 am Saturday my son sat immobile staring out the window and spitting. He headed once for the bathroom but I blocked it. I asked him if he had to poop. He said yes, and he was about to poop in his pants. So I allowed him to use the bathroom.
I told the nurse what happened. She went in after he was finished and asked if he had also urinated in the toilet. He said he had. She told me the 24-hour test was no good and couldn’t be used because he had not captured all the urine.
I told the nurse that there was no reason to keep him further at that point because he was determined to leave and we were not able to stop him. He finally laid back down a little bit and when I peeked around the curtain at 11:30 a.m. Saturday he appeared calm - or at least worn out. I told him the urine test was ruined. I told him the nurse would call the doctor about discharging him as per our promise made the night before (he agreed to cooperate only with the urine test – although he didn’t try very hard).
His uncle Rick arrived at about noon and my son appeared happy to see him. My son got a towel and wiped up the wet floor by his bed where he had been spitting. He was eager to go. I told him we had to wait to see what the doctors had to say. The three of us went to the cafeteria (I informed the nurse's station). My son had not eaten or drank anything all day and still refused to do so.
After his uncle (Rick) and I ate we went back to the room. Eric was a little calmer with Rick there, but still ready to bolt.
At about 1:30 Saturday afternoon a psychiatrist came into the room to evaluate my son's "capacity to give his informed consent" for the tests they wanted to perform. Rick and I left the room and she spent about 45 minutes with him.
When she came out, the psychiatrist shut the door and spoke with me and Rick. She determined that my son was incapable of giving his informed consent. At that time, since he was an inpatient (technically - even though he was not cooperating he had been admitted) two doctors could sign forms stating the procedures were medically necessary. She stated she would talk to the other teams (doctors) and tell us how they wanted to proceed. Up until this time I was told they could not force anything on him. That was why we had promised him he could leave after doing the urine test.
At about 2:30 pm Saturday his nurse, Mary, came into the room and I asked her if we could take fresh urine jugs and start a new test at home. She stated we could, and that in fact we could start the test right then. She got a fresh jug and wrote the start time on it: 2:35 p.m. Saturday. She said she would get fresh ice (the jug needed to be on ice) and a lab order slip so we could turn in the jug on Sunday. She said she would call the doctors about discharge.
By 3 pm Saturday my son still did not need to pee so the new jug remained empty; he had refused to drink or eat all day. His lips were dry and becoming chapped. I implored him to drink some water; he refused.
His dad and girlfriend got back to the hospital around 3:30. He went outside and refused to come back in; his dad, girlfriend and uncle were outside with him.
I waited a couple of hours and heard nothing. At about 4:30 p.m. Saturday I went to the nurse's station. The nurse (Mary) who was supposed to get the lab order for the jugs and start the discharge paperwork had done none of it. Nor had she called the doctors. There had been a shift change.
The new nurse knew nothing about our difficulties. By then it was about 6:00 p.m Saturday night. She said all the teams of doctors had gone home; they were under the impression my son was staying at the hospital. It was what they had ordered. They stated that if he left it would be "against medical advice." I was surprised the teams of doctors had been informed that my son was staying because the nurses were aware of his refusal to cooperate.
Since we had been told for most of his stay that they could not force him to cooperate, we had promised him he could leave after the urine test; we could not break our word now, nor were we capable of changing his mind. We had given him our word prior to the psychiatric evaluation.
The nurse said she would call the chief resident and get back to me.
Dr. Wong (chief resident?) called me and told me again the doctors wanted him to stay. I explained again that we also wanted him to stay but could not change his mind, and that we had been basically blocking the door all afternoon and evening.
Dr. Wong stated the doctors were firm but that she would contact them again and call me back.
Dr. Wong called back and stated that since my son did not have "capacity" the doctors were willing to physically restrain him (probably his dad and uncle) and then "chemically restrain" him. I told her that we had been telling him since he arrived that he had the choice and we could not force him (which was the case until after the evaluation). We had promised him he could leave at 11:30 that night (Saturday). I told her that if we forced him now he would feel utterly betrayed and we were afraid he would not remain at home with us afterward.
We did not want to overpower him and force him at this point. We would have to go home, see how the 2 recently drawn ceruloplasmin tests came back, and arrange a liver biopsy on and in/out basis. She said the doctors did not agree and that she would prepare the discharge paperwork stating that I allowed him to leave against medical advice.
We didn't want him to leave either but our only other choice was to restrain him and possibly lose his cooperation forever.
Dr. Wong brought the discharge paperwork to my son's room for me to sign, and at about 9:30 p.m. Saturday night we left UC Davis against medical advice. It was not what anyone wanted except my son (and maybe his girlfriend, who does not seem to grasp the seriousness of the situation).
We (me, his dad and uncle) were crushed but did not want to risk “losing” him by breaking our promise and overpowering him. We were afraid he would not remain at home afterward and that it would be even more impossible to help him.
The repeat ceruloplasmin tests (drawn 1/30/09 and 1/31/09) take a week and will not be done until later this week, the chief resident told me. If they are still low we are going to figure out how to force him to do the liver biopsy, since he is not capable of making an informed decision. In the event that is the case, his dad and uncle will speak to him to try to persuade him because he has fixated his anger on me and accused me of “making the whole thing up.”
The psychiatrist (who did his evaluation) said my son probably came to that conclusion (to blame me) when he thought about the situation and tried to fill the voids in his memory and understanding. She does not believe he is schizophrenic but believes something is causing his symptoms. She wanted to start him on a medication (Risperdal) to alleviate his psychiatric symptoms while the doctor worked on confirming/ruling out Wilson’s disease but my son refused.
Today I will call the insurance and also fax Dr. Medici a letter explaining the situation and to request information regarding how I can proceed to be appointed to make medical decisions for my son. I am also going to get a legal consultation through my employee assistance program to find out what my options are for helping my son.

By mom2six
Posted February 1, 2009 at 10:28 am
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Pedsm999:

I just wanted to say I am so sorry about whats going on with your son!
My prayers and thoughts are with you and him!
Keep us posted when you get the chance.

By pedsrn9999
Posted January 31, 2009 at 2:47 pm
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I just read all of this and it brought me to tears. Right now I'm sitting next to my 21-year-old son at Cedars Sinai in Los Angeles. He was diagnosed with WD in August of last year and deteriorated so quickly that they had to do a liver transplant in October. He has some tremors in his hands but it seems that his WD affected his liver more than it affected his neuro system. He has endured medical procedures that would bring most people to their knees.

I had to strongly advocate for proper treatment from day one. When he was first admitted to our local hospital in August with severe jaundice and LFTs beyond normal they could not figure out what was wrong with him. I finally insisted he be transferred to a liver center so we could get a diagnosis. We ended up at Cedars and they figured it was the "rare" Wilson's disease pretty quickly. They tried to save his liver by using large doses of Trientine but it didn't work. In the process of trying to save his liver he developed hypoplastic bone marrow. They thought it would correct after the transplant but it didn't and he's required close ongoing monitoring from a hematologist with transfusions of RBCs and platelets in order to maintain his cell levels.

Segway to today....We've been back in the hospital now for over 2 weeks. On January 15th he woke me up at 3 a.m. saying he was "sick". He had a temp of 104 and started to have severe vomiting. I got him back to our local ER as quick as I could. Within a couple of hours of admission he was on life-support with multi-organ failure in septic shock. Turns out he had the "rare" post-transplant complication of Teflitis. In order to save his life they had to do an emergency hemi-colectomy. He now has an ileostomy bag. His only memory is walking into the ER with me. He woke up on a vent 7 days later with no clue as to what had happened. He's VERY lucky to have survived this complication.

Yesterday they did a bone marrow biopsy (his second one). If your son ever has to have one INSIST it be done under conscious sedation. They are now testing him for the "rare" disease called Hemophagocytic lymphohistiocytosis (HLH) which could be a side effect of the immunosuppression he has had due to the liver transplant.

This has not been a fun 6-months for us. Just when I thought things were getting back to a "new" normal it exploded all over again. I'm a nurse practitioner so I have the advantage of being medically savvy. I know the "language" and I know how to talk to the doctors. For lay people I would suggest that you learn as much as possible about this illness. Make cheat sheets to carry with you. INSIST on copies of ALL labs and procedures and keep them in a notebook. Get your son to complete his advance directives NOW (I have medical power of attorney for my son and I carry his advance directives with me. It really saved a lot of time when he went into the hospital this time because I was able to consent for all his treatment and surgery). ALWAYS keep this paperwork with you when you go to the multitude of doctors appointments. NEVER hesitate to put your foot down and DEMAND answers for your son. It could end up saving his life.

I'm sending lots of {{{{hugs}}}} to you in this journey. If you have any questions email me at pedsrn9999@sbcglobal.net.

Shirley

By SearchingforAnswers
Posted January 30, 2009 at 1:17 pm
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Whenever you feel up to it, please let us know how your son's appointment went yesterday.
Don't forget that there are people here who care - whether the diagnosis is WD or not.

By acutedistress
Posted January 28, 2009 at 8:44 am
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Thank you so much for the info about the liver biopsy. It is such a relief to hear. When I mention the possibility my son gets very distressed, throws his arms up, shakes his head "no" and is agitated for a bit. We just remain firm and tell him he is going to cooperate because he can't have a life without his health. I think/hope that once the de-coppering has taken place he can be more reasonable. And yes, I think he will cooperate better with the doctors than he does with us. A couple of weeks ago when I was taking him to the doctor he asked, "why?" so I know that sometimes he remembers, sometimes he forgets. The times he forgets and I explain, he shakes his head in wonder. I don't know how much he "gets." I am desperate for improvement. It is breaking my heart.
I found this website when I started researching Wilson's Disease before he was referred to UC Davis. You're right, this website is a wonderful thing.

Welcome to Inspire!

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