The Acute Phase: The Downward Spiral
The Social Worker at Primary Children’s Hospital told us that writing in a journal can be therapeutic. Even more, perhaps sharing our journey these past few weeks may help other families with children who suffer from this rare, devastating disease.
ICU Day #7 (Thursday, July 6th)
1:00 AM: Drew is surprisingly alert tonight between his seizures, although he continues to have slurred and delayed speech. They have him on two different medicines to try and control his seizures, but they seem to be having little effect. As his mother and I sit in the room with him, he holds his mom’s hand and says,”Mom, I have a confession to make.”
His mother smiles and asks, “Confession about what?”
“Well, Mom,” he continues. “I was going to wait and tell you at the end of the summer, but I felt I needed to let you know now. I hope you’re not mad at me.”
A look of worry flashes briefly across his mother’s face before she reassures him, “Drew, you can tell me anything, and I will always love you and be proud of you.”
“Well, you know my friend, M❤️❤️❤️❤️?”
“Yes,” his mother nods.
“Well, she is my girlfriend.”
His mother and I both smile at each other as she says, “We kind of suspected she was your girlfriend, Drew.”
“Yeah, so I know I’m not supposed to have a girlfriend, Mom, but I really like her a lot.”
“You should bring her around more so we can meet her,” his mother says as she strokes his hair. “If you feel really strongly about her, then you just have to promise me that you’ll respect her and treat her like a daughter of God.”
“I will, Mom,” Drew replies. “I promise I will never touch her or do anything wrong to her.” They continue to talk for quite a while about girlfriends and trusting each other more and making good choices.
3:30 AM: Drew continues to drift in and out of sleep between seizures when he asks me, “Dad, is M❤️❤️❤️❤️ still in the ICU Waiting Room?”
“No, Drew,” I reply. “It is the middle of the night and she had to go home to get some sleep.”
Drew’s mother and I take turns resting in the recliner in the corner of his room, so I have been holding Drew’s hand and watching over him for the last couple of hours.
“Hey, Dad? Can you read my cards to me again?” (Several friends and family members had brought him some cards last night). So I pull out the several “Get Well” cards and read them to him again as he drifts back to sleep.
Family hike, June 2017
7:30 AM: Drew has had 10 seizures since midnight, with 7 of them just since 4:00 AM. They had to give him some Ativan to help break the cycle when he has more than 3 seizures within one hour. They seem to be needing the Ativan more and more.
9:30 AM: The family has been reeling this past night with the possibility that all of this time Drew was simply battling a kidney infection. His brother spent some time working over the punching bag in the basement. His older sister stayed up late researching possible answers for this development. His mother and younger sister cried and worried and hoped. As we waited for the doctors, I had been speaking with the nurses and we agreed that the CT scan results did not add up to just a kidney infection, nor would a kidney infection account for all of his symptoms.
By the end of the morning, we had met with all three groups of doctors: ICU, Neurology, and Infectious Disease. All three of them agreed that Drew did not have an infection in his kidneys, but rather, signs of inflammation, which is much different. Several signs that he did not have an infection were normal urine, no fevers, the inflammation was spotty and affecting both kidneys equally, and he never had a bladder infection or complained of pain with urination or in his low back. Furthermore, all of his other signs and symptoms had been improving since Sunday, but his seizures, lethargy, and transient confusion had been worsening. With this information, the Neurology doctors were much more certain that these all pointed to an autoimmune encephalopathy, whereas, the ICU doctors were not quite ready to accept this as the diagnosis and still wanted to wait for a few more lab results and possibly perform some other tests. Additionally, they schedule another CT scan with contrast this afternoon to look a little more closely at the inflammation in his kidneys.
3:30 PM: His seizure activity seems to be slowly increasing as the day goes on, not so much in the intensity or duration of his seizures, but more in the frequency. The two seizure medications don’t seem to be slowing things down at all. His brother and sisters take advantage of periods between seizures when Drew is somewhat alert.
“Hey, Drewbie,” his brother says. “Do you want to listen to some music?”
“Sure,” Drew answers without opening his eyes.
Alex and his younger sister, Ashley, pull up songs on their phone and play them softly. Interestingly, they play one of his current favorite songs by Jon Bellion, but as he listens to it, he says it doesn’t sound right and he asks them to play the right song. They double check that it is the right song, and even pull it up on his phone and play it, and he still says it doesn’t sound right.
Later in the afternoon, he randomly starts to sing a Veggie Tales song: “We are the pirates,… We are the pirates, who don’t do anything….” We had been watching a video clip of the short song, “We are the Pirates Who Don’t Do Anything,” and for some reason he starts singing the first couple of lines to us. At times, he will preseverate on some words or requests, such as asking repeatedly for sips of water over and over again even though we give him some.
Alex playing some music for Drew.
8:45 PM: Three more groups of doctors were consulted today: Neprhology (kidney specialists), Oncology (cancer), and Rheumatology (they help to manage children with autoimmune disorders). The CT scan with contrast was performed after Drew was sedated, and while he was out, the nurses started another IV.
The ICU doctors during evening rounds told us that the CT scan results came back this evening and showed that the inflammation in both kidneys had lessened and looked almost back to normal (again, not something you would expect from an infection). The Nephrology doctors did not see anything else wrong with his kidneys and signed off.
Seizure Count: approximately 20 seizures today; total of 32 seizures since Sunday.
ICU Day #8 (Friday, July 7th)
8:30 AM: The seizures contnue to become more and more frequent now, and to make matters worse, he requires help with his breathing nearly every time. Luckily most of the seizures last less than a minute, but the seizure medications do not seem to be helping.
Again, the ICU doctors are not entirely convinced yet as to the cause of Drew’s condition, but I lose my patience a little bit when they do their morning rounds.
“I can say that Drew is now doing worse than when I brought him in last Friday,” I say to the group of ICU doctors gathered in his room. “I know there are still a few lab tests pending, but could we please start doing more to treat and not continue to run tests?”
Fortunately, the Neurology doctors agree that further testing will not change our course of treatment at this point. The Neurology, Infectious Disease, Oncology, and Rheumatology doctors all feel very certain Drew has a type of autoimmune disorder causing his encephalopathy. Essentially, his immune system created antibodies about ten days ago to fight off the viral infection he had at home, but unfortunately, the antibodies started attacking the tissues in Drew’s brain and kidneys as well, which caused the encephalopathy. The doctors plan to start Drew on some high-dose steroids today and switch out one of his seizure medications to try a fourth medicine in an effort to get his seizures under control.
11:00 PM: It has been a rough day. Drew is up to 33 seizures in the last 24 hours. He really hasn’t been awake much today or spoken to us beyond groaning. Based upon the results they have, we finally hear a name for what type of autoimmune encephalopathy that they believe Drew is fighting — it is called FIRES, which stands for Febrile Infection-Related Epileptic Syndrome. The ICU doctors give my wife a hug as they talk about this suspected diagnosis. They tell us that outcomes are generally poor, and that they may request a visit tomorrow with the palliative care team. As we scramble to look up information on FIRES, there is not a lot of information about this rare disorder, but one thing that is clear: up to 30% of children with this syndrome will die, and right now things appear to be pretty grim for Drew.
Seizure Count: 33 seizures today, 65 seizures total since Sunday.
© Copyright 2017 Jeff, All rights Reserved. Written For: Jeffrey Olsen
How scary! 😢 Have they checked for diabetes or celiac disease?
Those were some of the very first things they checked for.
I will be praying for your son and family. I am so sorry for what you are all experiencing. I can’t even begin to imagine.
Thank you for your open and very complete remarks and your desire to help us understand the symptoms and problem Drew is having. Each hour must seem like a life time. Please know our prayers continue to be with you and our hears weigh heavy with your pain. May our Father in Heaven bring you some peace and comfort. May He also bring Drew the understanding or your love and that prayers are answered.
Our prayers are still coming to Drew and your Family💗
We are praying for your family and can’t imagine how difficult every day must be.
Please know all the Garners are thinking positively and routing for Drew.
I am not sure if this would help. This article has some information.
http://journals.sagepub.com/doi/pdf/10.1177/0883073816669450
Praying for your family 😔
We love you so much! We love Drew, he is such a good example to his peers, we pray for him daily. Know our thoughts and prayers are with your family and Drew! Much love. Eric and Nicki
Hi There! I’m not sure if you remember me from St. Marks. A FB friend of mine continued to post your story (It’s a small world). I took the bait and started reading the other night, and the story started to sound so familiar. That’s when I realized who I was reading about. This is so crazy! I can’t even begin to imagine what your family is going through. I’ve been anxiously waiting to see updates. I’m praying Drew doesn’t fall in to that 30%. My thoughts are with you and I hope they are able to continue on the path for more answers.
I’m Dawn’s cousin Bonnie, my sister-in-law started having seizures and after many tests was finally diagnosed with Lyme disease (it seems like it’s the last thing they test for and it takes a while to get the test results back). Has Drew been tested for Lyme?
Please give Dawn a hug for me and know that I am thinking about all of you and hope you can get some answers and relief soon!
Yes, tests were negative.
We live pretty close to primary children’s hospital and would be willing to help out however we can.we will keep your family in our thoughts. If we can bring you anything, dont hesitate to ask.
Have they tested for Lyme? It can cause these types of symptoms and most doctors don’t think to test for it. I’m so sorry for everything your family and son are going through!
Yes, tests were negative.
70 percent of those with Lyme have the tests come back as negative. It is because the CDC has changed the way they test, and they have left off much of what they used to test for. Make sure they IgG version of the test, and not the general Western test. I went through over 20 doctors before I was diagnosed positive because my doctor is trained in Lyme and made sure they did the proper testing.
Again, I am so so sorry for you and your family. It’s hard when doctors don’t have all the answers, but don’t give up fighting. You have lots of prayers coming your way!
The tests for Lyme disease are not always accurate and can come back negative during the first few weeks of infection. The antibodies that they’re testing for can take a few weeks to develop in the body so if they test during the first few weeks of the disease the results can come back negative, even though the person has the disease. I’ve heard that serious cases can cause seizures & kidney issues. Hopefully they checked his scalp. It doesn’t always produce a rash. Good luck & praying the Dr’s find an effective treatment for your son soon!
Hope you are working with Dr. Constantino. She saved my life and is an epileptic specialist. We are praying for Drew!
I’m so sorry to hear that this is happening to your family. You are in many people’s prayers. I am sure you are getting so many suggestions and ideas from people, but I wonder if he has been tested for Meningitis, bacterial or viral. My younger brother had it and as I have read your posts I remembered vividly many of the symptoms that Drew is now having as we worked to help my brother get better.
I’m sure you read this but it says some children get a positive response with a ketogenic diet? My heart aches for you. I pray that you may all feel comforted during this uncertain time.
Dr. Constitino is our neighbors daughter in law. I was telling Alex about her. Hopefully she can come and take a look a Drew.
Love and prayers from the Eichelberger family.
Love and prayers from the Sycamores 3rd ward council. We pray for Drew each Sunday.
Praying for your family! And for a speedy recovery for Drew.
Did Drew recently have any immunizations prior to this starting?
No.
This is all so heartbreaking! I don’t know you, but my thoughts & prayers are with your son & his family. Please research & consider cannabis as a treatment. It has been a miracle worker for many of our friends who’s children suffer from epilepsy. One friend went from 300 seizures a week to 1-2 a day. CBD is legal for epilepsy on Utah from what I understand. Came across this article last week about a girl who was successfully treated for FIRES with cannabis. Best of luck!
Have they checked for parasites ?
Yes. No parasites.
Did he have a gardacil shot?
No.
Praying for all of you!!! Stay strong & positive!
Had he recently received any vaccinations?
No
Has he received any vaccines recently?
No
We will share and request some of our family and friends to join you in prayer—so sorry for his suffering…
I am so very sorry for your families heartbreaking struggle! Prayers for all of you ❤️
Praying in Michigan for your son, and family.
I’m so sorry to hear about Drew! He was one of my favorite students! I had the pleasure of having him in my first grade class. One of my favorite memories of Drew was, when he preformed in a readers theater in our class. He had such a presence and natural ability to preform. He brought a lot of joy and laughter to our classroom. He is such a kind a caring person. In several of our conversations he expressed how important his family was to him and the desire to make you proud of him. I have enjoyed being able to see him come back and preform at Oakcrest. He has grown into such an amazing young man. My thoughts and prayers are with Drew and your family. I know miracles happen every day! I hope there will be one for Drew.
Love, Mr. Dupaix
But 70% DONT. Continued prayers for you all. ❤
I am so sorry you are all having to go through this. I lost my son to a massive seizure from an undiagnosed problem, when he was 19. I will be praying and fasting as long as I can for him and you.
Praying for Drew and your family.
I’m so sorry to hear what is happening to your son. I can only imagine the fear and worry you and your family must be feeling at this time. I looked up FIRES for myself, and yeah, there’s not a lot of info on it. Something that did come up was that there have been some positive responses with the ketogenic diet. I don’t know much about that diet either, but I figure it’s some hope. I’ll pray for Drew and your family. I hope there’s a miracle coming for him, but if not, definitely comfort. Trust in Heavenly Father that He has a plan for Drew and all of you during this difficult trial. Stay close to Him and Jesus Christ. Lean on family and friends for support. There is no shame in this and shows that you are strong enough to ask for help. I know you’re surrounded by love right now and many people are thinking of Drew and all of you and are praying for you all. Be strong and patient!
Never mind. I saw that this was asked and answered. Have you considered using essential oils?
I have just joined a group who will be praying and fasting for your son. All things are possible with our Lord and Savior, Jesus Christ. We will be praying for you and your entire family as well as the doctors and nurses caring for your son. Peace and hope be with you Jeffrey.
I don’t know your family, but my little family will be keeping Drew and the rest of your family in our prayers. I hope you will get the answers you need and continue to be strong.
Jeff, I’m so sorry to read all of this. My friend led me to your blog today. My prayers are with your son and family. Your son is a powerful soul and mighty in the Lord like you. I understand the pain of watching a child suffer. God bless.
My name is Clarisse Offen and I’m one of many people praying for Drew. I’ve had very few interactions with Drew, but was always very impressed by his demeanor and kindness. My daughter knows him from Musical Theater and Theater productions at the high school, (to easily place her, she was the maid, Mitzi – “thank you, you’re welcome” – in A Murder is Announced).
I shared the blog with Facebook friends, to make others aware of Drew’s situation and add their prayers to ours (I know many kids in the Theater program at the High School because I’ve helped in their productions). When I shared the link to the blog a good friend responded on my page. She read your blog and she has a son who had the same symptoms and diagnosis as Drew. I know when we have loved ones going through medical problems so many people want to help by trying to “troubleshoot” what could be wrong, but more often than not they just end up adding noise when we’re seeking calm. Her son is alive and well, and she offered her support as a parent who’s been where you are today. If you’d like to read her words, let me know and I’ll send them to you privately, or you can look up my Facebook profile (I made the post public, so you’d have access to it): Clarisse Lopes Offen.
We are praying for Drew, for your family, for the doctors and nurses, and we’re hoping you can feel the love and support being sent to your family during this trying time.
My sister in law is so sorry for Drew and the family. She is wondering if the Lyme testing was 2 tier including the Western Blot. Critical for a diagnosis of Lyme. She was near death until the additional Lyme testing. Also has a fairly rare seizure disorder. And DNA test showed additional protozoa blood infection. She finally found doctors who think outside the box. She said a blood test “CD67” was important for Lyme and protozoa.
No exposure. Negative for all Lyme tests, and they ran them twice.
I’ve been reading your blog posts since the very first one. A neighbor of mine shared it on Facebook and I’ve been following ever since. I pray for you all every single day. I know we all wish we knew what to say but I hope you know that you are being prayed for by so many.
How frustrating & how brave You are as parents AND DREW is a marvelous boy.
May your prayers be heard & answered as OUR HEAVENLY FATHER WILL BE DONE, HE LOVES each one of you….especially DREW as a volunteer to help Research. & Study human life for future care of children, & families. Trust & LOVE in His Ways!
As I was reading I couldn’t imagine the rollercoaster of emotions that your family its going thru. I can only pray and plea with Heavenly father for his well being, for blessing the doctors to find a right treatment and for your family and your son to feel loved and comforted in this struggling times.
I also share with a LDS mom page for prayers too
Love and prayers from Ontario – Canada
How is Drew today?
I am praying for you and will ask that you be put on the prayer list at the temple. Please know how much we live you and your family and especially Drew. If I can help in any way please let me know. I will help however I can. Bless you all
Have you thought about cannabis oil for seizures? since you said the medication they are giving him is not helping a whole lot! I’m so sorry and am praying him and your family! I hope you figure out what’s going on. ❤️❤️
Cannabis oil is still on the list of options, but there are other, more proven treatments being attempted first.
Has Drew been given a Blessing ?? Or two ??
Four so far.
Stil thinking of you all.