going against all odds...STEROID BURST JOURNAL

So we are letting you all in on our secret....we started the steroids on June 11th and have had amazing results.  He is not cured by any means, but the transformation has been astounding and it makes me thank God a billion times over and over again for demonstrating that with the proper medical attention, we could bring our son back.  Documentation is crucial for our follow-up appointment on August 23rd with a collective panel of professionals to determine the appropriate course of action.  Here is the journal I have been compiling since picking up the script...


We followed Dr. G's advice and decided to attempt the Steroid Burst, to temporarily cease the production of antibodies, therefore decreasing inflammation in his brain.  When I went to the pharmacy to pick it up on Saturday, I had many questions for the pharmacist.  He thought it was a very high dose of steroids, and it was a process for me to administer: draw up 8 CC's of air, inject with sterilized needle into saline water, draw out 9 CC's of water, inject in Salu-Medrol powder (the steroid), shake up to dissolve, and draw out the entire contents with needle to place in drink.  The pharmacist saw many scratched out notes, wasn't the one who originally took the phone call from his nurse, and he seemed a little unsure...so I left without the script.  He said he would call the doctor himself on Monday morning to make sure everything was correct.  I talked to Dr G's nurse Monday, and she re-confirmed everything, explaining the process and the reason the pharmacy itself didn't compound the mixture (trying to save us a little money, etc).  I talked for an extensive amount of time with her, and she tried to relieve my anxiety.  She told me that they do this burst all the time, it's completely safe (the FDA approves up to 40mg/Kilo and we decided on 20mg/kilo), but at the same time, also comes with risks.  She told me  not to feel any pressure on our decision- it was simply that- OUR choice.  They were just giving their best recommendation.

I picked the script up that afternoon, with tears in my eyes and shaking hands.  The same pharmacist was there, and told me, "This is really the end- you can't do much more than this if you are trying to turn the reaction around." 

He sold me- not on the drugs, but on the chance of recovering my son.


We started the steroids the next morning- sounds much easier than it truly was.
  Hunter refused the first drink, so we kept diluting until it was manageable to get done.  He probably finished 3/4 of the dose.  Here's the journal from each day...

Day 1: 6/11: Started at 7 AM.  Finished (diluted 4X) 3/4 in 2 hours. 
         11 AM: Very chatty.  Great eye contact.
        12:00PM:  Took kids to the post office...said, "Mommy, I see something unusual in here (what???)- it was a Mickey Mouse pillow pet- he couldn't get why it was at the post office- and I agreed!
        -Showed a lot of attention to Peyton all afternoon.
        -Up in middle of night from 3:00AM-4:40AM)- could not get back to sleep until 4:40

Day 2: Finished entire dosage (almost 500mg of SaluMedrol) in one hour.


got to pick out a toy from his grandparents...
eyes staring to look alive

         -Agitated.  Ran from me in parking lot at IOP.  Pulled his pants down when we entered the building- "I just want to go home!!!!!!!!!!!"  Almost knocked over his birthday cupcakes he brought to share.
          -Aggressive- lots of hitting. 

Day 3: 6/13: Finished his birthday dose in 30 minutes. :)
          -At store, "Mommy, want to know something interesting?"
          -Made it through Toys R Us with no meltdowns
          -Hit new OT twice during session.
          -Lots of whining, hitting, yelling at Peyton
          -Falling asleep in car on way to get birthday ice cream.



Day 4: 6/14: Finished dose in 45 minutes.
          -Better day for Miss D, knocked a chair over and asked, "Am I having a bad day??"
         -Swam at pool for an hour- very compliant.
          -rough beginning to in home ABA, but then did a little work
          -Birthday party- introduced Ian to Pyuish.  Didn't mind chaos in arcade, loud noises, crowded birthday room (over 40 people); let us sing happy birthday to him.

Day 5: 6/15: Last dose.  finished in 40 minutes.
         -Ipad died.  "Mommy, the ipad died, can you get the tablet b/c it died?"  no throwing, yelling, etc.
         -First day of SO swim team.  Screamed first 15 minutes of class.
         -Tried a new food, "Mmm, I love it Mommy!!"
         -Spent one hour in Gap, while Mommy and sister tried on clothes.  Pointed out things to show us.  No fits, no elopement
         -Night waking- up from 4:15-6 AM- hit mom when attempted to take back upstairs.  Back asleep till 7:30
Day 6: 6/16: Mom turned off CARS movie- no issues.
          -in AM, came and hid under bed, laughing "I'm hiding!"
          -joint attention amazing- referential eye contact with objects
         -built legos for over one hour with minimal assist
         -disfluent speech ( initial word repetition)


building his new legos

         -talked on Skype to grandma- said much better eye contact and attention- longest he had ever talked to them



Day 7: 6/17: Great speech at preschool- good conversation.  Good behavior.
         -not one outburst when mom arrived to do tx for 30 minutes- asked twice, "Are you done yet, Mommy?"
         -Asked me if Skyler had a good day.
        -Acting shy when we arrived at the IOP, hiding behind mom.
        -His note said, "Amazing day!  He was in a very good mood." Everyone said he was in such a good mood, very chatty.  Sang songs for them (Happy birthday Jesus)
       - As we walked outside from IOP, there was a pigeon on the ground. "Look mommy, it's a pigeon.  I'm going to say hi to him.  Hi, Pigeon!"
        -Purposefully let him try hard buckle- did not help for at least three minutes- no frustration.  Just said, "Mommy, I need help."

Day 8: 6/18: Walked in to Paige's VBS and out 2X with loud music, drums, and didn't get upset first time- at pickup, hit mommy a few times and said I want to go!

     -Did "school" with buddy JP for almost 90 minutes.  Sat through fine motor activities, circle time, books, scissors and glue project.  No fits!  When finished, went to room by self and did puzzles.
        -OCD about "Old New Red Blue" book- saw it at JP's house this weekend, and can't find our copy.  Wanted to go to store to find it.
        -Took ipad away pretty abruptly and got hit twice- blocked it one time.  Ran to room and slammed door twice.  Sat by the tablet but didn't play it.  Mother took it out of room and  slammed door.
        -Went to pool and did very well; however, hit mother when it was time to leave.  First time he was joking with me about leaving though...he would swim up close to the side of the pool with a big smile on his face and then slowly turn back around.  Seemed so "normal."
        -Dad came home and told him he would find book- after a good attempt and no book, OCD continued.  Did not go to bed until after 9 PM, even though full day and yawning in bathtub.


         
         First time drawing a multiple figure picture- it's a sunny day with a pool and a diving board, and john paul and hunter


I did not assist with these numbers at all- we counted cars and he had to fill in the correct amount of boxes, and write the numbers.  Check out the 6, 9, and the 5 "with a LONG hat," as he told me.

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I always have him write his first and last name- check out the "e"!! I also give him attributes to describe a word, and he has to figure out the word and sound it out (good phonemic awareness practice).  Look at that "tree"!!!

Day 9: June 19th: Had a hard time separating for preschool.  Teacher said it took one minute and she got three kisses today.  Told me when I arrived, "mommy, I told Skyler to do a good job for you."  Asked me, "Are we going to get Old, New, Red, blue?"  Had called Band N and they had it, so we went to get it.  Easy in, easy out of store.  No issues.  IOP- no issues.  No behaviors or meltdowns.  Mommy burned hand on oven and yelled, immediately said "Are y ou OK mommy?" gave up ipad easily for dinner.  Greeted daddy at door. "Daddy, I got old new red blue!"  Ran and showed him the book.  "Mommy made brownies! See, look?" extended hand to show him.  Silly at bathtime.  Became upset b/c "Snowy" didn't have a bed to sleep in.  Raged for 1 hour- kicking walls, hitting dad, screaming, pushing the rocker towards window, hit window behind blinds, threw blankets on floor.  FInally went to sleep around 9 after coming downstairs one more time.  1/2 probiotic.


Day 10: June 20th: Talked to health market and nutritionist.  Probiotics act as modulator- protect against yeast.  Sacchrymiccis B boosts immunoglobins...since we are in the process to suppress those, she thought we should skip that supplement at the present time.  Worked with mom for one hour- not one issue.  When ipad went off later in the day, threw it and screamed.  Paige had her VBS program.  Covered ears and ran out.  Hit mother.  Saw writhing arm/shoulder movement and realized it was a tic, once seen in an anxiety setting.  Arms around shoulders.  Did research on tics...Things that look more like habits, non-sensical things can be confused with OCD.  Phonic tics come in bouts.  The frequency and pattern of tics should be similar in differing hours.  Most common tic is an eye blinking tic- occur midline, occur near head, and proceed complex tics.  The shirt pulling (which he does) can be a tic (complex tic).  If it involves distal parts of the body, it is typically a tic, not a habit.  Tics wax and wane with stressors and anxiety (which we saw tonight).  70% tics are outgrown by puberty.  80-90% of children have a premonetary urge- they can feel the tic coming, like an itch, a tightness...the release is the tic movement.

Day 11: June 21st:Private school- hit dad and blinds, but did not hit teacher (first day).  When the in-home therapists came for a meeting, he looked up and said with great eye contact, "Hi guys." (therapists had commented how great his eye contact was).

Day 12: June 22nd: Hit mom in AM b/c he couldn't find the ipad.  Good creativity...singing "Hickory dickory dock. The snake ran up the clock" and then would laugh with sister. Wouldn't go to bed for sitter b/c he couldn't find his "bug mouth" Mcqueen. 

Day 13: June 23rd: Had 17 minute tantrum bc he wanted the ipad.  Put him in laundry room (recommended by in home therapists) until he could be safe.  Had thrown ipad, hit mom, hit blinds, slammed washing machine up and down multiple times.  Attempted to come out and mother asked him if he was ready to be safe; hit and so was brought back into room.

Day 14: June 24th: Had a better day at Ms. D's house.  No hitting teacher; just dad and blinds when he arrived.  Waited patiently for mommy to finish her speech session.  Was at table coloring with other children when I arrived.  Had swim lesson- hit teacher when she told him to wait before jumping in. Played tablet on way to IOP- wanted to finish long puzzle, mother gave several warnings.  Ended up yelling, hitting, and hit lead therapist when made it inside.  She held hands and tried to stop hitting as he yelled, "let me go!!"  Lasted at least 10 minutes.  Calmed down and had a great day.  Followed all directions and took "no" well.

IOP therapist told mother she went back and reviewed initial assessment (Dec 11).  He looked very different- she said with a year of intensive therapy we should be seeing major changes.  She felt it was "much bigger than just behavior."

Day 15: June 25th: Had school with JP.  Shorter attention span.  needed to say his name multiple times to get and very difficult to sustain attention.  however, great conversation with JP.  Swim lessons: no hitting. ABA session- played tablet majority of session, but did take turns.



Hunter did a really good job telling the therapist nicely to stop touching the tablet screen while he was playing! He also politely requested to not do coloring today. Listener Responding Respond to name Across Room (I) 4/5 Mand Instructions & Explanations Games w/ Peers (VB) N/A Play Skills Pretend Play Doctor & Mailman (VB) Independent Play Coloring-10 min - with mom NOT around (I) Hunter told his therapist very politely that he did not feel like coloring today. He needs one more to master, so this will be completed next session. Social Skills Peer Imitation Imitate peer action spontaneously (no instruction) (I) N/A Mand to Peers Appropriately gains peer attention & make request (I) N/A Sportsmanship Non-Competitive with adults (VB) 80%, 1/1 Hunter did awesome encouraging his therapist when she thought the puzzles she was doing were hard! Move prompt level to I! (He did the last one completely independent, along with a couple within the 80%.) Initiating Conversations Adults & Peers - frequency-10 min duration (I) 1/min Therapist sat quietly leaned over, while Hunter played with the tablet. Hunter would ask questions and talk about the things he was doing. Maintain Conversation Conversational Volleys (4) (I) 90% Awesome job! Hunter held conversations so well today, and answered questions in a timely manner! There was one incident where therapist asked Hunter a question, and he did not respond right away. Play Skills Developing Stories Hunter ends story (I) 6/8 Listener Responding & Tact Prepositions Program Mastered Intraverbal Descriptions Objects NOT Present (I) 70% Barriers Token economy 10 tokens w/10demands (I) Writing Handwriting Letters Lowercase: a, c, o, g, q (1PP;1I per letter) 80% Hunter's letters looked awesome today! His a was floating in the lines, and his o was very tiny. Hunter's g and q's are looking extremely better than last week! He did an awesome job putting the tails below the lines. After doing all the letters, he wanted his therapist to help him make an e. ☺ Social Skills Turn Taking Allows adult turn w/R+ for 1.5min (I) 80% GREAT job taking turns today on the tablet completing puzzles! There were two incidents where Hunter tried to take control of the tablet when therapist was doing a puzzle. 2 more! Respond to Peers Peer calls Hunter's name w/in 1ft (I) N/A Reading Phonics _all, _ell, _ill, _oll, _ull (I) 90% So much better today! 2 more! Sight Words Write, time, look, two, make, like, him, into, has, more (I) 50% Hunter struggled a bit on these today. Reading A-Z Hooked on Phonics Play & Writing Drawing Square (4PP;1I) 60%, 1/2 Hunter did great working on squares! He did two additional ones independently to earn his last token (which is the ½)! Classroom/Group Follow Group Instructions Direct group instruction (1G4I) N/A Social Skills Gaining Peer Attention Tap on shoulder/call name/eye contact G N/A Barriers to Learning Waiting 3 seconds Maintenance Maintenance Box Color: Barriers to Learning Desensitization Less than 1 teaspoon of water on clothes General Challenging Behaviors/Barriers to Learning Antecedents Challenging Behaviors Tantrum/ Non-compliance (min/hr) Aggression/ hr. Self-injury / hr. Property Destruction / hr. Elopement / hr. Hand Flapping / hr. Hair Twirling/hr Perseverative Speech/hr Scripting Verbal Refusals Demand Attention Tangible 1.2/hr Other .4/hr 4.8/hr 1.6/hr New Programs Introduced Parent Concerns Therapist Concerns Hunter had a wonderful day today! He had no challenging behaviors! Hunter did elope once to his bedroom during work time. Therapist followed him and guided him back down without saying a word and Hunter went back to work! Great job! Therapist used her watch as a secret timer today and rewarded Hunter extra play time without him noticing. Hunter was doing an amazing job with polite requests, taking turns, and encouraging his therapist, so therapist told him that because he was being so polite, he could do the next puzzle by himself. During one reward break, therapist timed 10 minutes and secretly did the initiating conversations program. Hunter seemed to enjoy earning his secret playtime. He told his therapist "You know what? I think we should take turns EVERY DAY!"

Yelled at Peyton to stop singing in car.  Pulled car over until he apologized.  After fit for 6 minutes, he apologized.  Did not want to stay at Paige's soccer camp.  Too windy.

Day 16: June 26th: "safe" hands all day.  Able to recover tablet with no hitting, no throwing.  Dropped off at IOP with light tap on arm, did hear him hitting window as mom left.  Had a fantastic day with friends; celebrated friend's birthday.  Great swim lesson with good eye contact and conversation.

No behaviors in IOP.  Good conversation.  Had "safe hands" until mommy took tablet away- hit mom a few times, but started crying immediately after, like he knew he had done wrong.  His hitting seemed like an immediate, I can't help this type of hit.  Very sweet at bedtime, even though got up a couple times.

Day 17: June 27th: Light taps at OT but she read them as needing proprioceptive input.  After working hard with pushing/pulling, behavior stopped.  Great conversation- MOmmy, can we go to the aquarium?  Are Reese and Paige in there?"  Volleyed back and forth with Reese during playdate- mostly were related to McQueen, but answered 70% of his questions with no cues (reese asked, "Who are your friends?"  And he answered, listing several friends.  Told me to tell him sorry when I thought he woke up Peyton- he said, "MOmmy, you should say sorry.  I didn't wake him"  When mother told him she was setting timer for finishing the tablet, instead of yelling no, he said, "Mommy, PLEASE don't set the timer."

-great swim lessons- 100% Wanted to get in the picture with Paige and reese

 

Stopping to look at the aquarium with the kids

 

 Following the lights and pictures to the music.

 Swim lessons with Ms Corina!  Love her!

 

 

-Hunter ruined a fort accidentally that Paige had built.  He was very worried immediately that Paige would be upset with him.  A little later Paige came upstairs and yelled at Hunter.  He got very upset with himself that he ruined it and made Paige upset- showed great empathy.

Day 18: June 28th: Great day at Ms. D's house- ran from front of house back to car, but mother was able to bring him back...was hesitant until teacher said, "look, I have something on the window for you!"  She had taped a picture of McQueen there (b/c he usually goes in and smacks the window).  Had great day, very few challenging behaviors.

-Mom made a comment to Paige and Daddy about the playground equipment that "whacked Peyton in the nose."  He followed that statement with, "Whacked?? Like whackadoodle??"  Didn't even realize he was paying attention.  We all laughed hard.  No hitting for 3 days in a row- marked with stickers on the calendar.  Able to get the TV back! Witnessed him stopping himself from throwing the TV control.

Day 19: June 29th: Little harder day.  Seemed tired- up late night prior.  Didnt' want to stay at Tball game- hit mother and benches when people started to cheer.  Took him to Anointing of the Sick Mass and screamed when the priest put oil on his head (Mass of healing). 

 

Didn't want to get in the pool at Special Olympics Swim Team.  Met friends that late afternoon for swimming/dinner.  Cried b/c he couldn't ride the scooter, b/c his clothes were wet...seemed to be a tired cry.  Watched the other kids put on a show and then sang with microphone for last song.

Day 20: June 30th: Great day.  good conversation.  Lots of questions.  Went to waterpark in

 

afternoon and hit dad when the pool closed- it had just become his turn in line for the lilly pads and they blew the whistles to get out.  Recovered quickly.  bedtime was a struggle.  Up and out of bed, slamming door, said he wasn't tired, wanted his pillowcase changed.  Finally to sleep around 9 PM.

 



Day 21: July 1st: No in-home preschool (closed this week).  Had great day with teacher's aide (sitter at home).  I asked her when I got back from dropping him off at IOP if he had a good day.  She said, "It is so great for me to see him at home- he is such a different kid."  I asked her how so...she said that he was so social with Paige, so happy, so engaged.  I asked her to elaborate more and she provided specific examples of him interacting with her (asking questions, etc).  I told her about the steroids and asked her if she felt like he was in a better place- "Most definetly.  I thought it was all due to home environment, but he is doing so well."

Day 22: July 2nd: Morning ABA session. "Hunter did a great job today. Therapist explained the red & green card. It works well to have the cards separate so that Hunter can hold onto the card or keep it in his pocket or on the table near him. Whenever challenging behaviors started the cards were switched. All 3 tantrums started with property destruction or aggression so Hunter was taken to the laundry room 3 times. The first time in the laundry room he pulled all the laundry out of the dryer so he was prompted to put it back once he was complying with demands as part of the behavior momentum. Overall awesome session. Hunter did great with 3 minute breaks so continue using this time for 2 hour sessions and 5 minute breaks for longer sessions. No arms behind back or pulling his sleeve down was observed.  Had three instances of going to laundry room to have safe hands.  Supervisor was here covering the session."
  Here are notes from PM session:

Need to finish. Hunter was very upset that he could not color his second picture all red and refused to color anymore. His therapist colored part of Lightning blue and Hunter became very upset. For the last 5 minutes Hunter was required to leave the picture (with blue Lightning) in front of him and not comment/complain about it or crumble it up. He did much better with this.

                                                            Playing sound bingo 

 

Also went to the library... tried to play a couple of computer games. 

We were

doing well, all ready to check out when Hunter realized he didn't have the three books I told him he could check out.  Paige told him there were Superwhy books and she led him to the section.  Hunter was holding his two Lightning McQueen books in his hands, and set them on the shelf to look through the Superwhy books.  As quick as he set them down, a little boy grabbed the books and walked towards his mother.  When Hunter looked back at the shelf and realized his books were gone, he became very upset and said, "He took my books!"  As the mother patronizingly said, "Honey, it looks like that little boy is upset about those books.  Do you need those?" and then continued to walk away, Hunter became very upset.  A full screaming session began and as Lara and I both tried to have him use his words and calm down, a librarian walked quickly up to us, as my back was turned and said, "Do you need my help to check out?  Can you take this in the hall?"

 

I took a deep breath and as much as I knew I should take his hand and walk away without a word, I looked at her and said, "My son has special needs.  We are trying the best we can." 

 

At that point, Hunter was hysterical and his therapist followed him as he ran away, screaming.  The librarian apologized and said, "I didn't know.  I can check these books out for you.  I'm sorry- I didn't know."  Recovered in the hallway where we discussed the importance of using words instead of crying.  He told daddy, "Someone took my books from me at the library" when he got home from work.

 

Day 23: July 3rd:  No private preschool.  At home with sitter, swim lessons.  Mom picked up to go to IOP.  Played tablet on way there- gave it back to mother with no problems.  Smiles.  Was only patient at program.  Mother asked in front of child if I should take him home; became upset when mother left him there.  According to therapists, he recovered easily.  Was very excited to go to fireworks/Ryan Kate's house.  When we arrived, jumped on trampoline and interacted with kids.  Got very anxious as it started to get dark, "I want to go home! I don't like the noise!  I don't like the fireworks!  However, after they parade finished, he ended up having a great day. 

Day 24: July 4th:

We met our friends at the parade.  Great compliance...only asked me to cover ears when fire trucks came by the then marching band.  Engaged in conversation with peer at our house with cars.  Played in pool with them- anxiety before getting in (biting nails, shying away).

 

                        getting their treat bags ready for the candy that the walkers pass out

 

 

 

               Wanted his ears covered

                                                                     

 

                                 May or may not have bribed with a sucker for these pictures

                                             

Day 25: July 5: Had sitter in the AM- old therapist from school.  Great compliance, one exception when he wanted to print a picture from the printer.  Therapist said he apologized on own.  Took kids to pool- GREAT compliance.  I even sat on a lounge chair at one point.  SO foreign!!  I didn't have to worry about chasing my kids every which direction...and I SAT!!!!!!!

 

Not one issue.  Parenting is easy!:) Thearpy in the afternoon- notes below.  Became upset one time when I took tablet away mid-puzzle, pushed table but did not hit therapist or mommy.

Day 26: July 6: Played dress-up with daddy while mommy was on bike ride.

 

 

 

 

 

 

  Pretended to be Superwhy and played nice with siblings.  Went to church and was AWESOME.  No behaviors.  Attempted to talk in whisper. :)  Paige had a friend sleepover and he wanted to be included.  Cried b/c he wanted to sleep in their room.  Moved him from the air mattress once he was asleep, found him on couch in the AM downstairs. 

Day 27: July 7: Told the kids they could watch a movie for rest time.  "Hey Paige, lets find a movie that we all like." In the AM, put a CD in player and said, Mommy, look at this CD!  I was cleaning up the table and told him I saw it, and he came in the kitchen, grabbed my hand, and said, "No, mommy, you have to look at it!" as he brought me out to the family room.  Did throw a movie in early AM when I told him no TV.  Noticed a tic-like stutter...on the end of words.  Peter said he noticed it yesterday, example: "Hey Paige-j-j-j-j".  Also noticed lots of shirt raising, with arms extended back.  When I was typing this, he came up tot he computer and pointed at the picture of Paige and him above, and said, "Wow, that's a cool picture!" looking right in my eyes.  When he needed the movie controller, walked in, touched my arm sweetly, and said, "Mommy, we can't find it.  Can you help us?" Later, after I bought him popcorn, "Wow- we have popcorn, Paige!", looking right at her.

Day 28 (FOUR WEEKS!): July 8: So many improvements, but here are the highlights:

-TV has not been hit once..my fancy recording system is that I cleaned it when we brought it out, and there is not one handprint on it. 

-Taken so many more outings. Has not bolted one time (with the exception of the library).

-Successful Mass four weeks in a row

-Has hit mom or dad minimally- always over removing a tangible.  Most of the time, though, now he will say, "When it gets to the end, I will give it to you."  And he does.

-Overall happier disposition.  Smiles often and is very pleasant.

-More gesturing and joint attention in conversational speech.

 

Our quality of life has improved greatly.  I am happy, more easy going, and confident in my son's progress.  I honestly can't believe that a month ago we were getting hit around the clock, dealing with non-stop non-compliance, and wondering if we would ever return to our "normal."

 

We are here.  We have seen the light, so to speak. 

 

And we are not going back. 

 

We are seeing our son once again.

 

Looking forward to collecting more data for our decision making on August 23rd. 

 

 



Need to finish. Hunter was very upset that he could not color his second picture all red and refused to color anymore. His therapist colored part of Lightning blue and Hunter became very upset. For the last 5 minutes Hunter was required to leave the picture (with blue Lightning) in front of him and not comment/complain about it or crumble it up. He did much better with this.