Tuesday, August 31, 2010

This is DJ...Dino Christopher Rivera Jr.

     On July 4th, 2010 he was your typical little 4 year old boy, just shy of his 5th birthday.  A few days later life changed for DJ as well as for everyone that knows and loves him.  
      After a night of enjoying the holiday with friends it was time to head home.  DJ was told to get his shoes on but complained he couldn’t put on his right shoe.  Like any other tired 4 year old being difficult is pretty much the norm.  The next day he mentioned his leg was bothering him.  At his age growing pains are normal so there was not great concern of something being wrong.  
       July 6th things proved not normal…..  DJ was rushed to the emergency room at 2 a.m.   His right leg had started jerking uncontrollably.  The hospital couldn’t determine a cause.  The following day DJ saw his pediatrician and with no symptoms showing up during the visit the doctor could not find a reason for what had happened either.       
      About a week passed and even though the jerking in his leg seemed to go away you could still see twitching and fluttering in his foot and toes.   On July 20th, the night after DJ’s 5th birthday, as he was falling asleep the whole right side of his body began jerking uncontrollably.  It was like an epileptic seizure but he was totally conscience, aware, and frightened.   He was once again taken to ER but this time they did a CT head scan and it was recommended he have an outpatient EEG followed up with a neurologist.
       It was July 28th when DJ had his first EEG at the Children’s Hospital along with blood work.  All showed nothing abnormal.   On July 31st, with the continued jerking and unable to sleep, DJ started complaining of the pain he was experiencing.  Another trip to ER and this time he was given steroids, an antibiotic, and Valium for the pain and to help him sleep.   Doctors were suspecting something called Chorea.   It is brought on by an untreated Strep infection or possibly Rheumatic Fever, but all DJ’s blood work showed no signs of infections.  DJ was referred to his pediatrician for an EKG and ECHO referral as Chorea could damage the valves of his heart.  August 3rd the cardiology report came back good, everything was normal with his heart.
          On August 4th DJ was admitted for three days to the Children’s Hospital in Aurora to undergo a total work-up which included massive blood tests, urinalysis, a second EEG, an MRI, and a Spinal Tap.  All medications previously prescribed, with the exception of Valium, were discontinued and he was started on anti-seizure medications.
         DJ wasn’t your typical little 5 year old boy anymore.  He couldn’t run and play with his friends, roller skate, or ride his bike.  He was due to start Kindergarten on August 19th but since his release from the hospital the frequency as well as intensity of his muscle seizures increased.  Doctor’s were working hard for a diagnosis.  Results were indicating EPC (Epilepsia Partialis Continua).
         When the first day of Kindergarten started, DJ was there.  He only made it about 30 minutes with Mommy at his side.  During the short period of time he experienced four episodes.  He wanted to go the second day but the muscle seizures sent him home within an hour and a half.   By Monday, August 23, with seizures more intense, his mobility had decreased greatly.  It was that day the call came from the doctor…..  as far as a diagnosis they were leaning toward Rasmussen Syndrome.
   Rasmussen syndrome: A brain disorder caused by inflammation of brain cells in one hemisphere. Its cause is unknown. Rasmussen syndrome causes seizures often difficult or impossible to control with medication, and eventually results in brain shrinkage (atrophy). Treatment is with surgery, if possible. The inflammation seems to stop of its own accord eventually, but the damage done is irreversible.
It is also called Rasmussen encephalitis. There are frequent and severe seizures (convulsions), progressive loss of motor skills and speech, hemiparesis (paralysis on one side of the body), encephalitis (inflammation of the brain), dementia, and mental deterioration. The disorder affects a single brain hemisphere (one side or the other of the brain but not both sides) and generally occurs in children under the age of 15.
The standard treatment for Rasmussen's encephalitis is surgery to remove or disconnect the affected part of the brain (hemispherectomy). Anti-epileptic drugs are usually not effective in the long run in controlling the seizures. Alternative treatments may include plasmapheresis (the removal and reinfusion of blood plasma), ketogenic diet (high fat, low carbohydrate), and steroids (cortisone-like drugs).
The prognosis varies. Untreated, the disorder may lead to severe neurological deficits including mental retardation and paralysis. In some patients the surgery decreases the seizures. However, most patients are left with some paralysis and speech deficits.
Rasmussen's encephalitis is believed due to a number of causes. In some cases there is an abnormal immune attack against what is called the glutamate receptor GluR3. Antibodies directed against GluR3 have been identified in patients. (Reference: Rogers et al.: Autoantibodies to glutamate receptor GluR3 in Rasmussen's encephalitis. Science 265: 648-651, 1994.) Plasmapheresis (skimming off the blood plasma) has been tried (to remove the GluR3) but the improvement was short-lived.
      A PET scan and Testicular Ultrasound were scheduled for August 25th.   Now, with the possibility of Rasmussen Syndrome, the doctor also scheduled DJ to undergo IVIG (Immune Globulin – Intravenous) for 8 hours August 26th and again on August 27th.  He was able to do this on an outpatient basis in the Infusion Center at the Children’s Hospital in Aurora. The treatments, at this time, seem to have done some good.  DJ’s right arm has not seized since the first treatment and as of this writing, after the second treatment, his leg seizures have also slowed some, both in frequency and intensity.  
      IVIG however wasn’t a total solution or cure.  Results of the PET scan came in, and even with the positive outlook from the treatment there were concerns about what was next.  With the PET scan showing abnormalities the original MRI was re-read.  DJ was scheduled for his second MRI and a fourth EEG.  The MRI was done on Monday, August 30 and his overnight stay at the hospital for the EEG, September 1st.   His MRI results showed more shrinkage on the left side of his brain which confirms the Rasmussen Syndrome diagnosis.  DJ will soon be scheduled for a hemispherectomy.
       The hemispherectomy will remove the part of DJ’s brain affected with Rasmussen.  It is unknown, until a detailed evaluation by the neurosurgeons is complete, if a portion or the entire left side of DJ’s brain will need to be removed.  Surgery is the only way to totally arrest Rasmussen Syndrome.  The thought of such an invasive surgery is scary but case studies show the younger the patient the more plasticity in the brain for the remaining side to take over and start gaining back the skills lost from the portion removed.   Time is of the essence.  His motor function on the right side, at this point, has been the only thing affected by the seizures.   
        After the surgery DJ is looking at an extended stay in the Children’s Hospital for his recovery.  He will undergo extensive physical, speech, and occupational therapy.  With hope and faith he will soon be back to the energetic, happy, social little guy he was before Rasmussen’s interrupted his life.

43 comments:

  1. We love you DJ and have committed all our prayers to your recovery!!!

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  2. DJ,
    You do not know me but a friend of yours and mine, Miss Farrah told me about you. We are praying for you and your family. We are also praying that your doctors will have the guidance and the wisdom to help you feel better. Just remember that JESUS loves you and he hears you. So hang in there and be strong. And when you are feeling low open up that big heart and talk to Jesus. Love you
    Steph Martin and Family

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  3. Our prayers are with u guys!!

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  4. Thank you Kristen for providing the above information about DJ and what has been occurring with him the past month and half. This space will keep us informed as you all head into this next phase. It is an interesting but scary situation he and you and your family are facing. All my prayers and thoughts are with you all.

    Love,

    Uncle John

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  5. God hears little boys too ,we love you little guy.Our prayers r with you!! hugs&kisses your cousins in Az. the ybarra's and duran's

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  6. DJ is in our thoughts and prayers. Please let us know if you need help with anything. We are right up the road.
    Love,
    John, Alexa, Liam and Donovan (Litels)

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  7. Dino & Kristen, my heart goes out to you and your family. My prayers will also be with you. DJ is a strong little man that will keep on going.
    Love
    Chris Arteaga

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  8. Dino & Kristen -
    Our thoughts and prayers are with you as you make the most difficult decisions parents could possibly be asked to make. Know that we are here to support you and do whatever we can from a long distance. DJ is lucky to have you both as his parents and to have such a wonderful family and group of friends.
    Love to you all -
    Lisa, Jim, Karah & Halynne Jolly

    We love you all!

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  9. Our thoughts, prayers, and hugs are with you every single day and every single step down this road.

    Love you all,
    Cara, Christian, and Adriana

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  10. many many thoughts and prayers are coming your way from california DJ.

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  11. Hi DJ,
    You might not remember us because we have not seen you since you were very little, but we remember you. We think of you everyday DJ, and we are all praying for you. Sending you a BIG hug from Arizona.
    Lots of Love,
    Shannon, Trinity, & Morgan

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  12. Dino, Kristen and DJ, Love you guys and am praying for God to show himself in and thru the difficult days that lie ahead. Thanks for sharing this info. My heart goes out to you all, will be lifting you up daily in prayer. Love Tina

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  13. Sending love and light your way.

    Outcomes are VERY good with a hemispherectomy. My son experienced a rapid onset seizure disorder at age two and suffered from hundreds of seizures a day until age three, losing speech and fine motor skills as a result. The seizures were unresponsive to a variety of anti-convulsants. He was eventually put on the Ketogenic diet and experienced an immediate reduction in seizures. Within a few weeks, he was seizure free. Over time, he regained all of his skill loss and remains seizure-free now, nine years later. A healthy and happy young man!

    While staying at the Ronald McDonlad House, we met several families whose children had VERY good results with a hemispherectomy!

    Good luck and Godspeed to you and yours,
    Pattie Archuleta

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  14. Cristina and CiannaAugust 31, 2010 at 10:28 PM

    Hey little man! Your big sister and I are headed to see you in a few days! We know you are a very strong little guy and we will be here with you every step of the way. Dino and Kristen I know how strong you two are Cianna and I are here if you need anything. We will see you guys in a few days. We love you Dj!

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  15. Teresa Duran GordonSeptember 1, 2010 at 8:24 AM

    Dino, Kristin an DJ

    Thank you so much for the blog. I am praying for you. Like the song says, " Jesus loves the little children". Jesus is holding your little guy up. I know that Heavenly Father is watching over all of you. Please let me know if there is anything I can do from my end. Love and Hugs, Your cousin Teresa

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  16. Elizabeth SpetnagelSeptember 1, 2010 at 8:46 AM

    Hi Guys,
    We miss you at school!! I would love to come visit you at the hospital after your surgery. Please let me know if I can :) Thinking about you, Miss. Spetnagel

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  17. WOW!!!!!! Though I became aware of DJ and your family through an email that Teresa forwarded, my heart goes out to all of you, especially little DJ. I sincerely hope and pray that you will experience the positive outcome that you desire and get your lively little boy back very soon. We will pray for a speedy recovery.

    Chris Johnson

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  18. Kristen and Dino, prayers have been answered for DJ's diagnosis. We give Jesus the glory for this. So now that we know what his ailment is I stand in agreement with your family, friends, and those who have traveled this path that Jesus's hand will be with the doctors as they perform the surgery. I will continue to pray in agreement for your precious son and for your whole family. He does answer our prayers.

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  19. Dear Dino and family.
    I am a good friend to your grandma Ann. I have many poeple in Phoenix Arizona praying for you. I have a grandson named Devon who is very close to your age and he wants you to know that he is praying for you too. You are a very brave little boy who has lots of poeple who love you. With faith for your healing. Lorrie Carman and family.

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  20. Kristen and family, you are facing some very difficult times as parents. Thinking of this situation as something that you have to go through AND as something that will get better will help you stay strong.DJ needs you to stay strong and positive. My thoughts of encouragement are coming your way.Mrs. Barbat

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  21. Lynsey Marah And DustySeptember 1, 2010 at 1:51 PM

    Hey Dj. its Lynseyy Marahh And Dusty Your Biq Cousins.We Love And Miss You VERY Muchh, it Makes Us Sadd Too Have Too Readd This Storyy! But We Hope Youu Get Better REAL SOON! We Keep Youu in Our Dailyy Prayers Always.

    Love Alyways, Lynseyy,Marahh And Dusty<333

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  22. Amy (Cabanillas) HahnSeptember 1, 2010 at 3:47 PM

    Dino and family - The strength of your family, friends and belief in all the prayers being sent your way will get you thru this. I know we haven't seen each other in years, but my thoughts and prayers are with your son for a speedy and healthy recovery.

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  23. Dino and family,

    We are so very sorry to hear of your son's condition. It's so heartbreaking when small children are affected by things they don't quite understand. Our prayers are with you in these days and weeks ahead as you navigate through the surgery and recovery process.

    Kevin and Dina Van Hazel

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  24. My Friends,
    My heart just hurts so much that you are going through this. I am a strong believer in prayer and faith. Let your friends be strong for you and take care of eachother. I will do anything you ask. I will pray for you every night. Please don't hesitate to let your friends be there for you. It's a return on the investment you made in us. God Bless..

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  25. Little D.J an Angel from God... My family and I pray for you recovery.. I don't know you but I do know you are a fighter... May God be with you through out your journey.... My prayers go out to you and your family!!

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  26. Little D.J your a strong boy.and always remember that god is always there by your side.. god Bless you D.J keep staying strong cuz i know you can.. my prayers too you little man...and always remember you are gods gift to this world.... Love Ruby L..

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  27. DJ- People in MN are keeping their fingers crossed that you get better soon. We hope that your doctors are the BEST & SMARTEST in the world. Listen to your favorite music to help you get over the rough spots. The words of the song, "The Climb" have a great message for you and your family! We're pulling for you.

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  28. Thank you for sharing DJ's story with all of us. Just as we know that his mommy and daddy are very strong and caring, and his extended family and friends are tremendously supportive – so do we know that DJ will conquer this illness and shine as brightly as ever.

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  29. To the Rivera family - through family I heard of your story. I work with the Children's Miracle Network in Kansas City and hear stories of children who have illnesses and injuries every day, I will never cease to be amazed at the strength of our children and the families that support them. I wish your family miracles and hope! From Kansas City, my prayers to you - Erin Martinez-Manning

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  30. Your cousins the Shively's are thinking of all of you and the challenges that your up against. We know that DJ will make it through this ordeal and come out even stronger for it. We will keep you all in our thoughts & prayers. Pam & Ron Shively

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  31. Let me know if I can do anything. If you ever need a last minute baby-sitter or anything, I'm usually home during the day, unless I'm running Hope to an appointment, and we're just a few doors down the street. I'll send you an email with my cell #.

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  32. Dino, I am so sorry to hear about your son's condition. I know haven't seen you in years, but it sounds like you have an amazingly strong and loving family. There is an incredibible number of people that are going to be your prayer warriors! We serve a big, big God, and He is Mighty to save! Know that I will be praying and believing for your son's healing!

    Tina (Cress) Weight

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  33. Amy Rivera and familySeptember 2, 2010 at 5:16 PM

    I will be praying for DJ and for your family! I am sorry to hear that this has happened. I've been told that God doesnt give you anything that he knows that you can't handle.You are a wonderful family and very strong. It takes special people to deal with things like this and even though it is hard, i pray that things get better soon! Please keep us posted and i hope all goes well!
    Lots of love from ur cousins in Missouri,
    Love you,
    (Tony's daughter)
    Amy Rivera and family

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  34. Our love and prayers go out to you all, and we know that our Heavenly Father walks with you and will keep you all in His loving embrace. I have forwarded this blog to extended family and the prayer chain goes on.Lord hear our prayers.
    Love and Hugs from your cousin Ramiro and Family

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  35. A dear friend in Tuscan, AZ sent the email about little DJ to us in Georgia. We have a little 5 yr grand daughter who is so special to us so I know how special little DJ is to your family. I also know how special he is to God & Jesus will certainly take care of him. Kristin and family keep your faith in the Lord, always be positive and you will conquor this terrible medical problem. DJ will grow up and live his life for Jesus. Our prayers are with you. God Bless little DJ and his entire family.

    Kay & Family, Ga.

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  36. Dino, I am a friend of your father's here in Tucson. I just got off the phone with Art and he gave me the web site to follow DJ's fight. I send my prayers and support to you, your wife and DJ...Art is wanting to be there and I know he is there in loving spirit...keep your faith and know God's will will be done. blessings,c

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  37. Hi D.J
    I am friend of your father here in Casa Grande.I went to school with him.I you have a loving family.Who loves you very much. I have two girls 9 and 7 they are both are sending you prayers.They loved the Childeren hospital here Phoneix they let them play with everything there.I wanted to play too but my girls told me that I might break something...man!! Love from friends here in Az.Elizabeth,Alexandria and Genevieve =0)

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  38. Thinking of you and praying for a successful surgery. We love all of you and hope that all of our prayers keep you comforted.
    Franny and family

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  39. mij0 love you praying for you god loves you from uncle tony rivera sr. and family

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  40. Hey guys,

    We are praying for a speedy recovery. Our prayers our with you...

    Jeff, Adrianna, Kaila and Jaiden...

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  41. DJ, Dino and Family,
    Been praying for you. One passage I've prayed on over and over is 1 Peter 5:7 "cast all your anxiety on him because he cares for you"
    May the Lord continue to hold you in His arms and give you strength to get thru this.

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  42. Dino & family
    DJ is a strong little man just like his tata. My prayer go out to all. be strong and have faith.
    Sebastian

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