This is Wilson.* His mother, Aline, took the picture to mark a happy and hopeful moment following a traumatic period when Wilson participated in a University of Illinois at Chicago clinical trial that tested whether lithium was effective in treating children with bipolar disorder.
ProPublica Illinois reported in April that the UIC psychiatrist who oversaw several federally funded studies, Dr. Mani Pavuluri, violated research rules, failed to alert parents of risks and falsified data to cover up misconduct, and that UIC didn’t properly oversee her work. The National Institute of Mental Health forced UIC to return $3.1 million in grant money in December and, not long after, Pavuluri left the university. Pavuluri, who had founded a UIC pediatric mood disorders clinic in 2000 and treated children from around the country, opened a private practice.
Hundreds of children participated in Pavuluri’s studies. After UIC provided only limited information about how they were affected, we put out a call for families who took part to tell us about their experiences.
That’s when we heard from Aline. Her daughter Page had read our investigation while working in a university research lab and remembered her brother was one of Pavuluri’s subjects. (There is confusion about which studies Wilson was enrolled in.)
Aline had documented her son’s experience as a research subject on CaringBridge, a private online journaling platform that people use to provide updates on a loved one’s health. The journal, which covers late 2010 and early 2011, records the family’s journey through a desperate attempt to help their 10-year-old son, laying bare the heartbreak, loneliness and stress of raising a child with mental illness.
The decision to enroll in the UIC study would affect them all: Aline, a stay-at-home mom, and Thomas, an engineer who works in international sales, and their four children — twin daughters Tess and Page, then seniors in high school, and fifth-graders Wilson and Nash, both with mental illness and learning challenges.
Aline typically wrote late at night from a computer in the guest room, the house finally still with the boys in bed, the room illuminated only by a desk lamp. She typed in a hurry, sometimes interrupted by a child unable to sleep, and she didn’t stop to check for typos.
We’re publishing selected entries from the journal, with her permission, edited for length. Aline, now 55, and Wilson, 18, share their thoughts and memories in annotations that appear throughout the piece.
The journal opens with Wilson’s acceptance into a lithium trial. Aline didn’t know if Wilson would receive the drug or a placebo but even the possibility offered the family a rare sense of hope.
Wilson was excepted into the study! We are very excited but also worried. Wilson will have to go off all of his medications during the next three weeks. Then we go back to UIC and have some blood work done to make sure he is medication free and that he has no underlying health problems. If everything looks good he will begin the first faze of the study.
Faze one is double bind study where he may be taking lithium or a placebo. We will not know which he is on. This means he could be without medication to control his bipolar disorder for that eight weeks. He will not be able to attend school while he does his med wash and may not be able to be in school while he is in faze one depending on how he is doing.
There are safety protocols in place in case of an emergency, but we are, of course, hoping he will be one of the children actually receiving the lithium. We can and will withdraw from the study if it becomes necessary. The plan is to keep Wilson at home throughout the whole study. My main goal will be keeping Wilson and the rest of the family safe during this time. This may mean that Nash, Tess and Page, stay somewhere other than at home. Not looking forward to that.
Every one we meet with was very nice, there were actually toys to play with! Wilson was treated with respect and care which made for a nice change from some other experiences we have had. Even after the study is done they will continue to follow Wilson yearly until we no longer want to participate.
Wilson’s family first began to realize the severity of his mental illness when he was 6 years old. One afternoon, playing with neighborhood friends, Wilson said he heard voices telling him the friends wanted to hurt him. He grabbed a baseball bat and began chasing them around the backyard.
Later that night, Wilson climbed into his mother’s arms. “I don’t want to be like this,” he told her. “What is going to happen to me?”
She rocked him and made him a promise.
“I don’t know for sure,” she remembers telling him, “but we will do everything we can.”
She took him to psychiatrists near their home in a community northwest of Chicago and in the city. A kitchen cabinet became a medicine chest, and Wilson learned to swallow pills. When one medication didn’t help, he was given another.
By the time he was 10, doctors concluded he would likely need to live in a residential treatment center away from home.
Aline and Thomas were desperate to keep Wilson with them. When they heard about Pavuluri’s research, they saw it as their last hope. Pavuluri was doing potentially groundbreaking work on the effectiveness of lithium in children with bipolar disorder.
Wilson had been taking various medications for four years to control his mental illness, particularly his emotional outbursts and psychosis — as many as 14 pills a day — and he would have to stop taking them all to participate in the study.
Aline was nervous.
Today was a little more difficult for Wilson. He was more volatile than one would like but less than we had feared. ...
Wilson had lots of fun hanging out with some of his neighborhood friends and running wild on the trails. ...
We made it through another day, a somewhat hard one but one that also included good things. Tomorrow is another step down in the meds.
Wilson is almost completely off of his medications now, down to just two pills in the evening. Both of which he will be going off of in two days. Just a week and a half ago he was taking six different kinds of medication totaling 14 pills a day. He still has a significant amount of medication in his body. We are hoping the med wash will be done by the 22 and we can than begin the trial.
Over all things are going better than we had expected. Wilson's irritability has actually decreased a great deal. He is dealing with a lot more mania than he had in the past. On Friday morning he got up, ate breakfast and ask if he could go for a run around the subdivision circle which is 1.4 mile. I said sure just put your shoes on first. He ended up running three times around the circle barefoot before he stopped back home.
He has times of just boundless energy and no fear. I have found I need watch him closely when he is feeling too up as he has no ability to judge the safety of whatever pops into his head. Wilson also gets extremely giddy and can not calm down or extremely restless.
Because if these issues Wilson will continue to be part of our school districts home bound program. He also had to at least temporally drop out of the children singing choir and the children bell choir he was involved at church. He has his heart set on playing basket ball again this winter so we are going to try to have him do that.
We want him to have some activities left with friends.
Tomorrow is a big day. I got a call late Friday afternoon asking if we could bring Wilson down to UIC for a fMRI, some blood work and some other test. ...
This is a hard journey but I have great hope that life will improve for Wilson and others because we are undertaking it.
Wilson and his family have struggled to get information from UIC. Over several years, they have received conflicting information about which study he participated in — though Aline’s mention of the fMRI scan in her journal may provide a clue.
In 2014, UIC alerted Wilson’s family that he had taken part in a study in which problems had been discovered. They received a letter UIC sent to the families of 350 children who had participated in at least one of three studies of concern, informing them of “errors” in Pavuluri’s conduct.
According to the letter, Pavuluri enrolled children in the studies who shouldn’t have been eligible, failed to describe the risks and alternatives to the children and their families, and did not perform tests intended to minimize the risks of lithium. Two of those studies included fMRI scans, which measure and map brain activity.
In July, responding to questions from Wilson, UIC officials wrote to say he was “never enrolled” in any of the studies listed in the 2014 letter. And in a letter this month, the university told Wilson that his family got the notification in 2014 because, at the time, the university couldn’t determine who had participated in which study so it was sent “out of an abundance of caution.”
UIC now says, and records show, that Wilson participated in a federally funded study that Pavuluri oversaw known as the Collaborative Lithium Trials, which evaluated the use of lithium in children ages 7 to 17 with bipolar disorder. Lithium has been shown to be effective in adults with bipolar disorder, and the study aimed to see whether the drug — which is not approved by the Food and Drug Administration for children under 12 — would be effective for younger children.
The study, which included 80 children at 10 academic medical centers, concluded lithium performed better than a placebo to reduce mania in children with bipolar disorder and was “generally well tolerated,” according to findings published in the journal Pediatrics. This study was not among the three for which UIC had to return federal grant money.
Aline recorded in her journal that Wilson was given an fMRI scan right before he started taking the study pill, and both she and her son remember him answering questions during the test. But the protocol for the study the university says he took part in didn't include an fMRI.
The study that triggered the unprecedented $3.1 million repayment to the federal government in December included fMRI testing on children before and after they took lithium. It was supposed to be for children at least 13 years old, but Pavuluri enrolled younger children in violation of the rules, records show. UIC also returned money for two other studies.
Aline suspects his test results were being used or considered for one or more of the problem studies UIC was conducting at the same time. But officials told Wilson they can’t find any records showing he had been given an fMRI.
A UIC spokesperson said the university responds to requests for medical or study records “in a timely manner.”
Last week was a busy week, Wilson had to go down to UIC on both Monday and Friday. He did great both days, Monday we were there for 7 hours. ...
About half way through the day Wilson told me he was bored and wished he could go to school and do things like other kids can. Than he said "but is nice to have time with just you mom". He is a very sweet kid.
The grad students that are running the study are universally nice and it is enjoyable to see their excitement about improving treatments for children with bipolar disorder. They seem very comfortable with Wilson even when he doesn't act like a typical ten year old. That on its own is a blessing.
On Friday by the time I got Wilson home, everyone fed and the boys to bed I was very tired. Not just physically tired, rather overwhelmed by life tired. Tired of not having time to myself, (I was not meant to be a home schooler) tired of needing to take the boys behavioral issues into account for every thing I do.
Everything from going to the grocery store to whether we can get together with family for holidays all revolves around how they each are doing on any given day. Making long term plans is difficult and at times imposable. I am a planer so that can be hard for me. Just like Wilson I miss spending time with friends and being involved in outside activities. ...
This week we go down to UIC on Monday. I would like to take the train but not sure if that would work, Wilson has times where he paces and talks none stop for up to an hour. Not something that would go over well on Metra. I hope as we progress in the study and Wilson begins to taking medication we will be able to take the train. ...
I have no idea when Wilson will be able to go back to school. It all depends on wheither he gets to be on the lithium and if so how he does on it. The two of us could be constant companions for quit a while longer.
Once things get at least somewhat more stable around here Thomas and I are going to tackle making a long term plan for Wilson and Nash if something should happen to both of us. To me that is one of the hardest things to think about. What will happen to our beloved sons when we can no longer care for them. They will have their sisters but I will not allow Tess and Page to give up their futures because Thomas and I did not make the plans we should have. Tess and Page have lovingly and without resentmeant given up so much of their "normal" childhood. I want them to use all they have worked for to have the life they want.
The whole family is looking forward to Thanksgiving with Thomas’ side of the family. ...
I Hope you all have a wonderful Thanksgiving with much opportunity to remember life's blessings.
Sometime before Thanksgiving, Wilson received a bottle of the study drug and started taking it. Participants were randomized by a computer program to get either lithium or a placebo, which they were to take for eight weeks. Wilson and his family didn’t know which group he was in and, according to the protocol, neither would Pavuluri or other research staff.
On Thanksgiving, the family gathered at the home of Wilson’s uncle. In the morning, they built a trebuchet for Pumpkin Chunkin, the sport of trying to chuck a pumpkin as far as you can. But then Wilson started having trouble walking.
Today has been wonderful day with family but it had some really scary parts mixed in. Wilson had an adverse reaction to his medication in the late morning. He was very manic and I had tried to get him to run around the house with me to use up some energy. He said yes but than instead of running he kept laughing and falling down. I just though he was being silly and he then went over by Thomas, who was working on a project out in a shed. A short time later I saw Thomas walking Wilson to the house holding Wilson's arm. Wilson was walking funny but I thought he was fighting him because he didn't want to to come in. When they got inside Thomas called me over and told me that Wilson's was having trouble using his legs. We got him to the sofa and he began twitching. Then he said he was having trouble using his arms. I went and called the emergency number we have for UIC while Thomas stayed with Wilson. They did not think it was related to the test med he is on.
We sat with him and over the next 15 minutes Wilson lost control of all of his voluntary muscles. He was basically paralyzed, he could not even open his eyes. He was breathing ok but was crying because he was so scared. Thomas was again on the phone with the doctor, she told him this did sound like a reaction to the medication but he would be ok, she had had this happen before. She told us it would take about and hour to resolve itself but he was not in any danger.
Meanwhile Wilson was totally floppy, we had to hold him upright on the sofa because otherwise he would flop over and start choking on his saliva. Thomas and I sat on either side of Wilson, held him and talked to him. We all very scared, it was hard to trust that the doctor was right and that Wilson would be ok. Of course during much of this time Wilson could not talk. Than we noticed that Wilson's eyes were opening and closing, soon after that Wilson was able to say, "Mommy, mommy".
In another 20 minutes he was back to normal. It was such a relief to see him walking and even smiling. We were so afraid we might loose him or that he would not recover from the paralysis. Than about a hour later his speech deteriorated, he could not speak clearly and was having trouble swallowing. He got to the point where he was drooling and we could not understand him. He was still able to walk and seemed fine otherwise. We kept him close to us and in about an 30 minutes he stopped drooling and in another 20 minutes he speech was back to normal.
We talked to the doctor again in the evening and changed his medication scheadual to try and prevent a reacurance. I hate what Wilson is going through to try and live a better life.
It was also very scary for Tess, Nash and Page. They were great and stayed calm and trused us to take care of Wilson.
We will not let Wilson be away from Thomas or myself until we are sure nothing like this will happened again. I hope you all had a more relaxing day than we did and found many blessings to be thankful for.
Aline has videos of Wilson from that day, and while she won’t watch them, she shared them with ProPublica Illinois and allowed us to publish the audio. We’ve combined two clips from their recordings.
If you listen, imagine Wilson on a couch, his head tilted back and eyes closed. His parents sit on either side of him. He can’t move his legs. Other family members are in the kitchen preparing the Thanksgiving meal.
His father asks him to say the alphabet. He opens his mouth and tries to say “A,” but only a muffled noise comes out.
He whimpers and his head lolls to the side. “I know, I know, I know you’re scared,” his mother tells him while stroking the side of his face. “But I promise you are going to be OK.”
Aline said they called the emergency numbers for the study and spoke with Pavuluri. She said Pavuluri said Wilson didn’t need to go to the emergency room and that he would be OK. Aline remains troubled by her decision not to seek immediate medical care. “We trusted way too much. We were desperate,” she says.
Study notes from that day, which Wilson recently obtained from UIC, show that Pavuluri described Wilson as having “decreased muscle tone” and his symptoms as a “probable moderate side effect.” She recommended he temporarily take less of the study medication.
A UIC spokeswoman declined to comment on Wilson, citing privacy laws, but said: “We take these matters very seriously and we are committed to adhering to the highest standards for research integrity — particularly regarding research issues involving minors — and to complying with all applicable federal, state and university regulations.”
Pavuluri did not respond to recent requests for comment. In an interview in March, she said her research on young children in the Collaborative Lithium Trials persuaded her she had good reason to lower the age of participants beyond what had been approved for the study that came under scrutiny, a decision that ultimately got her in trouble.
In explaining that decision, she said, “I have a lot of experience treating younger kids with lithium in another trial. I felt that it would be good to get experience helping young children and understanding their brains — as well as for scientific reasons — I expanded the criteria.”
Pavuluri said lithium is an appropriate treatment option if children are followed carefully and that she treated all her research subjects and patients “like an angel.”
I just got a call from Dr. P at UIC, in order for Wilson to stay in the study we have to go back to giving him medication 3 times day. We had cut back because of his reaction on Thursday. The way the protocol is written there is not much room for variance from the prescribed schedule. We were hoping to wait until Monday to increase back to three times a day.
As of today we went back to two doses a day and he has done very well. Because he has done so well today we plan on doing as Dr. P has requested. Please keep Wilson in your prayers tomorrow.
Wilson had what we think was some form of a panic attack yesterday evening. He seems to be slipping into a depressed state the last few days. He is sleeping a lot, when he is awake he pretty much just wants to lay down and"rest". I see very little of the energy he has always had. ...
Wilson still has some raging but it is much less. For the last two days there has been almost no mania. See him so unlike himself is hard, I truly miss the mania. At least he was involved in life and happy in those moments. ...
I hate not knowing what to do for my child. I love Wilson and should be able to do a better job of keeping him well. When you have a child regardless of how, you make a promish to take care of them and help them to grew into the person they were ment to be. I feel like we are failing both Wilson and Nash in that important way.
The good news is that Wilson is no longer tired and sleepy all the time.The bad news is that there has been a lot of raging the last two days. Things were bad enough this evening that the girls are packing a bag to keep in their truck. That way they can be ready to stay with a friend for the night if we feel that it is safer for them to stay away from home. ...
Tonight I had to promise Nash that he could sleep with me all night because he is afraid that Wilson will wake in the night and hurt him. On the way to see his play therapist this evening Nash kept telling me he did not want to go back home tonight, he was too scared. By the end of therapy he had calmed down and was ready to go back home, knowing that his Dad and I were both there to keep him safe.
As Tess said today, when you hear Wilson crying in despair you just want to hold him until it is all OK again. But unfortunately when he is feeling the worst he gets no comfort from any of us. Trying to talk to him or just give him a hug will set him off again. ...
He ask me last night what was going to become of him. I told him that we would keep trying to help him and that his dad and I would always be there to help him, he will never be alone in his fight. That seemed to bring him some comfort.
My therapist has told me that one the best things that parents can do is have our children go to bed each night knowing they are loved and wanted. Right now we are trying to make sure each of our children feels that completely.
My world keeps getting narrower and narrower. I know there are other families out there dealing with the same things but I do not know how to find them. I feel so alone in this. There is no one to turn to and ask what do we do now, what can we expect to happen next, how do we help our sons and our daughters through this. ...
I no longer get time to recharge and I can feel it. In the last three days Thomas, Tess and Page, Tess’ doctor and Nash’s therapist have all told me how drained I look. I am drained and we have six and a half more weeks to go in this stage of the trial.
Even before they got married, Aline and Thomas knew they wanted biological and adopted children. Tess and Page were 7 years old when the couple took in a foster child, Nash, who was just 4 days old when they brought him home. Nine months later, another baby needed a family. Born addicted to cocaine, Wilson had spent his first month in the hospital and then passed through four biological relatives’ homes before coming to them when he was 9 months old.
Aline and Thomas eventually adopted both boys.
Nash has severe developmental and intellectual delays. As Wilson required more attention at home, Nash acted out and got in trouble at school.
“We are not able to provide (Nash) with the predictability and attention that is so important for him to function well. I feel we are failing him right now and I find that very painful,” Aline wrote on Dec. 17.
While Wilson’s older sisters periodically slept at friends’ homes during this time, that wasn’t an option for Nash. “He really went through terrible times of feeling unsafe in his own home, and yet he had no control over the situation,” Aline says.
I spoke with Dr. P at UIC today and she faxed in a prescription for what they call a rescue medication. It is a sedative that we can give Wilson when he is so agitated that we are concerned about his or others safety. It is a relief to know that there is something we can do to keep everyone safe. I hope we will not have to use it too often. I do not like the idea of restraining Wilson with medication but I think it may be our best options at times.
Wilson and I made our regular Monday morning trip down to UIC today. His medication will be increased by a small amount starting tomorrow. The doctor assured me that it takes some time for lithium to work and that we should not give up or get too discouraged. Of course nether the doctor or I know whether he is really on lithium or not. As things get harder and harder with Wilson, Thomas and I find not knowing increasingly difficult, but understand the study would not be valid if we knew.
We had a good weekend, with both Thomas and I home we can usually keep Wilson from getting upset by controlling how we all interact with him. We went out and cut a tree in the beautiful snow on Saturday morning. We brought two of the boy’s friends along because Thomas and I knew that between us we could make sure everything went well and it did. It was so nice to see Wilson having fun with friends; he was laughing and enjoying himself completely. We all had fun and I think that morning will be one of our best memories during this time. ...
Today I am going forward with the hope that Wilson is indeed on lithium and we will begin to see an improvement soon. It our worst moments I try to hold onto the belief that is only a temporary situation and that we will be able to help Wilson become healthy again soon.
The last few days have been very difficult. We had to use a rescue medication for Wilson last night and twice today. Both Thomas and I are unsure if we can continue with the study but we do not know where else to turn. ...
We were on the phone with Wilson’s doctor from UIC twice today. She had us switch to a different rescue medication and told Thomas we can give it up to three times a day if we need to. ...
Wilson told me again today how he has lost all his friends because of the bad things he does and that everyone hates him. That is not true, but he does not get to spend time with friends right now. He is one lonely little boy. ...
The future has become such a scary place, what will happen if we do not find an answer for Wilson? He talks about wanting to die and the suicide rate for people with bipolar disorder is high. I hate this illness and what it is doing to my child and family. This is our last year with Tess and Page living at home we should be focused on that, but instead of planning for their future we are trying to save Wilson. So far the girls are both holding up pretty well, they amaze me with their love and compassion for both of their brothers.
As I have promised Wilson over and over we will keep on fighting for him.
It is 11:30 and Thomas is going to try laying down with Wilson so at least Thomas and I can get some sleep and maybe Wilson will fall asleep also. At least we will know he is safe in bed.
Just a quick note, Wilson did not fall asleep with Thomas. He began screaming once we got him to lay down. It turns out that he “knows” that there is someone outside the house waiting to come in at night and kill him. No reassurances including our list: no one wants to harm him, it is too could for someone to be out there, the dog would bark if someone broke in and his Dad and I are here, made him feel safer. He screamed until about 2:00 in the morning. We gave him yet another rescue medication but each time he would begin to settle down he would “hear” something and begin screaming in fear again. ...
We are grateful to have him home with us so we can help him through this dreadful time. Thomas and I as well as his doctors firmly believe that home is the best place for him to be. We feel the blessing of all the love and prayers we know are coming our way.
But other nights that week weren’t any better.
For clarity, we split Aline’s next journal entry into two parts.
We were up until after 1:00 with him last night. He never stopped talking; I tried pretending I was asleep to see if that would make him stop and settle down. He stopped talking to me and instead talked to God. It was the most amazing thing, he was the most lucid he had been all day. He asked God why he didn’t take away his bipolar, why he allowed his (biological) mom and dad to do drugs and why God did not help them stop. He prayed for a miracle, asking for a God to make him a friend and send him to him. He also yelled at God and told Him He was full of shit for letting him have all these problems. He talked about all the people suffering that need Gods help. He talked to God for about a 1/2 hour, than he heard me crying and knew I was awake.
Wilson then came back and laid down with me, he asked me to kill him so I could have a life. I told him I would not have a life I wanted to live without him. We talked some more than I told him to be still and try to sleep we could talk in the morning. He would be quiet for about one minute then said in a rather robotic voice, “I can’t sleep what do I do now?” This went on for over an hour, when I could not take it anymore Thomas took over.Wilson did finally sleep.
That morning, less than five weeks after Wilson was accepted into the drug study, Aline and Thomas made the decision they had desperately hoped to avoid.
We unblinded Wilson this morning. He is completely taken over by his psychosis. ...
This morning we have talked to three psychiatrists, two from UIC and his personal psychiatrist. Turns out he was on lithium, which is why the mania stopped I guess. We are adding an antipsychotic starting this morning. He is now out of the study. We wanted so much to help him get his life back and instead things are far worse.
We will keep on loving Wilson as he is now and working and praying to get our Wilson back.
Tomorrow we go to UIC to do the final paperwork and testing to remove him from the study. It makes me sad because we had such high hope when he got accepted. We will also be seeing a new psychiatrist at UIC that will be taking over his care.
A Dec. 13 blood test showed Wilson had a toxic level of lithium, according to records UIC recently provided to him. (Tests from a week earlier showed he had a safe, therapeutic level of the drug.)
Lithium toxicity can be extremely dangerous. Symptoms range from vomiting and fatigue to slurred speech, seizures, kidney failure and death.
The parental consent documents for the Collaborative Lithium Trials study cautioned about the dangers of lithium toxicity. “Every effort will be made to make sure that lithium toxicity does not occur,” according to the consent form. “Even a small amount of extra lithium can lead to serious side effects.”
I miss our Wilson, the Wilson we have with right now walks different, talks different, and has a very different personality. He is afraid much of the time not only at night but during the day as well. Every noise startles and scares him. He rarely laughs; we have learned not to joke with him because he gets confused and upset. ...
Tonight Wilson’s speech seems slurred and he is drinking a lot of water, both signs of lithium toxicity, if this continues tomorrow I will be talking to his doctor in the morning.
I just want Wilson to get well and have a normal childhood of school, friends, and activities he enjoys. He is so afraid of “them” coming to get him he cannot be alone in a room after dark, even if I or someone else is in the next room he is terrified. He has no life outside of our house. Days go by that he sees no one but his family and healthcare providers. I want to do more for him but do not know how. He is so lonely.
At the beginning of 2011, Wilson still exhibited signs of lithium toxicity and psychosis, according to Aline’s journal. He had frightening visual and auditory hallucinations. He needed his parents to take turns lying with him before he could fall asleep. He couldn’t be left in a room alone.
He continued to take lithium in the hope that it would help control his raging, but in the middle of January, Wilson’s doctor decided it wasn’t helping and he withdrew from the medication over a six-day period.
Wilson began to hang out with school friends again and met with a tutor to catch up on schoolwork. As things started to look up, Aline reflected on the effects of the study.
“The whole family ended up going through what I can only call a major trauma,” she wrote in the last of her five posts in January.
She celebrated that there were some days when there were no “major meltdowns from any child (or parent).” She called those days blessings, and she was grateful for them.
But other difficult decisions lay ahead.
How can this be?
We had a wonderful snow day yesterday. I took lots of pictures and the kids all played together outside. ...
All four of my kids spent time crawling out of Wilson's window and jumping off the porch roof into a huge snow drift. I think they were surprised I let them but this was a once in a life time snow for us. A day of fun they can remember all their lives.
For me it was all the more special because Thomas and I have come to the realization that it is no longer a matter of if Wilson has to move into a residential setting, but rather when. Sometimes when I think about that I hurt so bad I can hardly breathe. I have developed the fine art of finding myself alone and crying uncontrollably for 5 minutes and then pulling myself together and going on with the day.
Thomas and I will begin looking at residential homes for Wilson this month. We still will be working to keep him home with us as long as possible but know we must be ready when the time comes where we no longer can. ...
Wilson just fell asleep next to me as I was reading to him tonight. Someday Thomas and I will be making a choice that means I will not be able to read to him at bedtime. I will not be the one who cares for him when he is sick. I will not be there when he calls for me and is afraid. How can this be?
He loves us, we love him, how can this be?
How can mental illness out fight our love. I do not know how long Wilson will be at home with us but I know it will not be long enough.
How can this be?
By the end of February, Wilson had returned to school and the family took a weekend ski trip. Aline and Thomas had found a residential treatment center for Wilson in Iowa but, for the time being, decided to keep him at home.
Both boys continued to have emotional outbursts, some of them extreme, but less severe than when Wilson was in the study. Aline applied for a state grant to help care for children with severe mental illness.
“Sometimes I wonder how my children will remember their childhood,” she wrote in the journal on Feb. 12. “Not the way I expected, I am sure, but I hope they will all be able to see and remember the good times in the midst of the struggles.”
As their lives began returning to the relative stability they had before Wilson entered the trial, Aline signed into CaringBridge to thank the 15 to 20 people following her journal in one of her final posts.
Thank you all for helping us through this very difficult time, we are very blessed in so many ways.
We are enjoying this break in the action while we have it, keeping in mind that in the past all such breaks have been very temporary.
Peace be with all of you.
Aline hadn’t looked at the journal in years. Then, in the spring of 2018, her daughter told her about ProPublica Illinois’ investigation into Pavuluri’s misconduct and UIC’s lax oversight.
She sent an email to ProPublica Illinois, writing that her son had participated in a lithium study at UIC. “It became apparent that the study was detrimental to his mental health and we ended up withdrawing him from the study,” she wrote.
“We would be happy to share his story.”
Eight years have passed since the UIC study. In July, the family gathered in their backyard to celebrate the high school graduations of Wilson and Nash, a milestone that at times had seemed unattainable. They were surrounded by relatives and friends whose support helped keep them all together, including one, Sarah, who flew in from North Carolina.
Through it all, his family kept him at home. He never moved into a treatment center. Wilson now works 30 hours a week at the same company as his father and takes life-skills classes through the public school district. He remains close with his sisters, who live outside Illinois, texting or Snapchatting with them almost every day.
The success came despite many challenging periods. Wilson was hospitalized multiple times in the years after the UIC study and has attempted suicide. He takes various psychiatric medications.
Wilson wants a permanent reminder of his perseverance. He is saving up his money to get a single word tattooed on his forearm: Resilient.
Aline thought she had written her last words about her son’s experiences nearly eight years ago, but we asked if she would add one more entry. She didn’t hesitate.
Reading my journal after so many years I realized that I had let go of a lot of the memories as we have gone forward and live our life as a family. I know my feelings now reliving that time are impacted by knowing that we came through that experience and more than survived, we all thrived. Wilson is doing better than we could have dreamt. Not because of being in the study as we had expected, but rather despite it.
He continues to struggle with his mental illness but is an incredibly strong young man who reaches to achieve the most he can, and be the best person he is able to be. There have been setbacks but he always pushes himself to get back on track. He is in most ways a very typical 18 yr old man and we are very proud of him.
If I can pass on any advice to families who are where we were then, it is to lead with love and be accepting of support from those who can give it to you. Ask for what you need to help your child without shame. I hope that those who read this will come away with a better understanding of mental illness and the toll in takes on the person with it and those who love them.
It would be a blessing to me to help others that face similar circumstances. I hope my story provides some hope that you, too, will overcome the challenges. I want this to be the story for other families that I was looking for 8 years ago.