Taking the Gloves Off

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Enough is enough is ENOUGH.


I, we, the whole family, has had enough.


As forward as I am, I have tried to step back and let the professionals do what they do best.  I have tried to hard to not be the mom who does too much research and interject my opinions.  I have been as good as I feel like I can be because I want the best care for my son.


Now, don’t get me wrong.  I like our current doctor.  He normally responds to my emails (though not so much lately), he has agreed to confer with a specialist (Dr. Mitchell) in LA to bounce ideas off of each other.  I’ve sent him my YOUTUBE channel to show him his progress.  I’ve kept detailed records of daily symptoms after starting his ACTH shots.


I think it is time for me to be a bit more assertive.  Probably much to his chagrin.  I am going to be doing lots of homework on OMS and I’m going to be asking a lot of questions on my facebook support group.  These people are a wealth of information.  They have had success and they’ve had failures and I want to glean from them.


Our Current Issues


    • Constant Shaking.  Worse after nap.


    • Opsoclonus is constant.


    • Inability to hold utensils and feeding himsef


    • Fine motor skills are struggling


    • Gross motor skills are struggling


    • Not sleeping well


    • Distinct speech issues


    • Glassy eyed wild screaming fits where his whole body stiffens.


    • OCD is rearing its ugly head


    • I believe he has had some acid reflux.


    • Rages


    • Not wanting to eat


    • Unsure of everything and everyone


There are many more issues….but my brain is shutting down.  I will research each and every one of these things and I’m going to fight for what I believe will help him….even if it means stepping outside of myself and trusting Jesus and changes drs.  There is a great dr in Boston and another wonderful lady in LA.


Big Daddy and I will sit down and evaluate his symptoms and how we can holistically help him or if we need help from the world of the medical field.  We will discuss whether we will remain and trust our current dr or step out on faith and go to LA or Boston.


There will be nothing that will stop me from figuring this out.   Nothing.  God goes before me, He is behind me and He has me flanked on the right and the left.  I also have my family holding my arms up and intervening on Hunter’s behalf.  I will not shy away from asking for prayer and specific prayer for him.  This “condition” will not define my son.  He will overcome.  He will win.  He will have no side effects.  He will be the exception to the rule.


I’m done walking around the mulberry bush….never was my strong suit…, I’ll do it my way (with God’s guidance, of course).


Specific Prayer Requests


**figuring his sleep schedule out.


**kicking around melatonin or trazadone


**Switching drs.


**Work on rages and how to better handle it without me losing my shit.


**Asking for help more


**Not feeling guilty about taking time for myself to rejuvenate.


**He has a 3 hr assessment next week for OT, PT, and SLP…anxious for that and to see the results


**15-16 is set for IViG and Chemo


**Meeting with our current dr and me being bold (asking for CBC and FA testing) and not just agreeing to agree.


A Moment I Won’t Soon Forget

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This past Sunday, Big Daddy and I decided that we would go to church with my mama.  See, her Sunday School Class (the Empty Nesters), as collected money the past 2 Christmases and donated it to our fund for Louisville.  We put ALL donated money in a plastic money bag and we have marked it Lville.  We use this for gas, to and from, snacks, food, and hotel stays.  I made last years donation stretch quite a bit…almost until the end of the year.  This year, they surprised us and did it again.  We are so humbled and grateful.


My days are short and busy, so getting to the store to buy a thank you card seemed like an impossible task….also…..I just didn’t know if I could find one that could do justice in expressing ourselves.  These people had never met us.  They have never met my son, they just know what my parents tell them and it is hard for our parents to understand the ins and outs of this life altering thing that Hunter has.  I thought it would be best to personally go, introduce them to Hunter and the rest of my family and answer some questions, as well as, thanking them.


We got there and their SS teacher, Donnie, stepped out in the hall.  When my crew walked in (everyone but my oldest daughter), the look of surprise on my daddy’s face and my Martha’s……that was a good moment.  After being introduced to everyone and them, so graciously feeding my kids LOL….I looked over and there stood my daddy.  With the fellas, drinking his coffee.  See, the thing is is that, growing up my dad came for holidays and if one of us girls sang.  That was it.  I never knew him to go to SS, he would slip in for those brief moments in big church and then he would leave as quick as he could.


In my adult life….I’m pretty sure I’ve never seen him in a church (except for weddings).  My mom faithfully has always gone…dragging her kids behind her 🙂  I was overwhelmed with the sight of him standing there.  He wasn’t there because he was forced.  He was there because he wanted to be there.  He is surrounded by men and women, of God, who love him.  He CHOSE to go.  He drives by himself.  It is cold outside…like bitterly cold and since his medical issues (stroke 2 yrs ago and quadruple bypass earlier this year), he can’t hardly handle the cold.  Yet, there he stood.  With that grin on his face….taking it all in.  He has been in church since God shook him to the core about 11 years ago.  He fell in love with my mama again.  He fell in love with God again.  His SS teacher is a retired cop, he knows the things my daddy has gone through.  He can sympathize and empathize.  They are like a little match made in heaven.


I am in awe of the goodness of Jesus.  I’m blessed to have parents who love each other.  I saw my daddy….in a sunday school class….because he *wanted* to be there.  My heart.  My parents have stood in front of me protecting me from the world, beside me as I made tough decisions, and behind me to hold me up when I start to fall.  They have done anything that I’ve asked of them and then some.  I can never repay them.


My rainbow is growing 🙂


Who Likes Getting Shots

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This past week, we have started a new regime of medication for our zebra.  This is not a fun one….nor are the other medications that he has to take.  This one, however, is just stinky on all fronts.


Our first line of defense in fighting OMS is getting IViG treatments once a month.  This means, we (Hunter and I) either leave SUPER early in the morning to get to Norton’s Children’s Hospital by 8 am or we leave the night before.  We get there, register and then we head to the OMO area where kids are there to get their treatments for whatever they need it for.

We have a wonderful nurse who has been with us every time we have gone.  He is going on this 6th treatment.  When we get there, we do the standard answering questions and getting his vitals.  Within about an hour, they come in (usually the IV team, which consists of 2 women whom I am convinced are angels from heaven) and start his IV.  This is never a fun thing, especially for a toddler.  After that is finished and tears are dried, Kim (our nurse) comes in and gives him Tylenol and Benadryl to help offset any potential side effects.  We then wait for about 30 minutes until Kim comes back and starts is IViG drip.  She gets the blood pressure cuff on his leg, he watches a 1/2 of a movie…gets slightly evil and then goes to sleep.  He may sleep for an hour to 2 hours.  She comes in every 15-30 minutes to adjust the time.  We run this IV for about 6-10 hrs depending on how his body is reacting.

Once he wakes up from his nap, he immediately starts with the Opsoclonus (eyes darting back and forth) and then the shaking starts.  I try to get him to eat lunch, but it is hard.  Last time, I ran to the cafeteria to get him a salad and he ate that pretty well.  Once we are done, we get everything out and we wait another 30 minutes or so and then we drive home for 3 1/2 hours.  Sometimes we stop for supper and sometimes we just get gas and eat junk on the way home.  He *rarely* sleeps on the way home, so that makes for a super fun time.


This January, he will have his third dose of Rituximab (chemo).  He had one about a week after he got out of the hospital, in June and then another 2 weeks after that.  Our goal is to kill off the B-cells that his body is producing.  See, he has either *had* cancer and his body did its job, produced the B-cells and attacked the cancer, reabsorbing it back in his body….but now, they think his brain is a foreign body, so they are now attacking his brain.  Or, it is idiopathic…..he might have had a virus (which he was never sick)…..OR he could get cancer within a few years (neuroblastoma, in his chest cavity).  Most kids have the NB, have it removed, but are still symptomatic.  In January, we will be admitted for 23 hrs and do IViG and Chemo…..good times, again, will be had by all.


Our newest course of action is to add in ACTH.  It is like a steroid on steroids….I have also heard it described as a synthetic hormone that helps your brain to produce Cortisol.  Whatever it is…it is a beast of a medication.  Kids are on this for years. …well, they are on this and when they are weaned, the become symptomatic again and have to restart.  Some kids can move from this to a dex pulse.  Some kids move to oral steroids.  It causes irritability, weight gain, puffyness, jitters, insomnia, hyperactiveness, and all the other things that come along with steroids.  This is not an IV drip, though.  This is a daily shot that I have to administer…IM (in his muscle), in his thigh……with an 18 gauge needle :/  I would use those big ol needles when I would draw blood from a cow and I’m expected to shoot this into my baby everyday for up to 3 yrs?????????!!!!!!!!!!!!!  It is, however, supposed to work quickly….with his symptoms anyway.


Our goal is remission.  I have talked to other moms and their kids took 2 yrs-7 yrs to get into remission.  To be in remission means you are asymptomatic and taking no meds.  These sweet families have encouraged me and helped me understand this is not a sprint…it is a marathon.  The longer Hunter is symptomatic, the more permanent brain damage occurs.  These kids have lasting side effects from the OMS and from the steroids.  There is ADHD, OCD, Rages, learning disabilities, low functioning, and many more things that he could deal with for the rest of his life.  That is a hard pill to swallow.


I get so frustrated when he can’t go to sleep, when he goes from happy to crazy screaming, when he gets violent, or slings food everywhere because he cannot hold his own fork.  If I get so frustrated, I cannot imagine how he feels…..but…..then there was God.


God is still on the throne.  He allowed this to happen for a reason…..this is not catching Him by surprise and He has the perfect provision in mind for Hunter and our family.  I will continue to hold onto hope……I may be swinging from one little frayed end of that rope, but I am hanging on nonetheless.


Kick in the Gut

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So sick of OMS……repeat SO SICK OF OMS.


I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health.  It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics.  It has been a bur in my saddle.


I called our local hospital and they said they could do it.  Yay.  Then the nurse from our doctor’s office called and said she was facing resistance.  She said that because Hunter is “medically fragile” that they will not see him.  He is not a do therapy and get better kind of kid.  He is a do therapy and maintain his status type of kid.


I’m surprised I heard anything past “medically fragile.”  I think I did miss a lot because tose 2 words, used in a sentence with my son, cut me to the core.  The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. dependency on medical care for which daily skilled (nursing) intervention is medically.  Maybe I knew that, deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.


The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition.  I sit here and watch him and I see that he is shakes….I see that he struggles with walking….I hear his speech issues….his food issues….his eye twitching…..and I think he is medically fragile.  There is no cure.  There are massive drugs he has to take to maintain his health but those drugs have massive side effects that has adverse effects on his health.  It is a double edged sword.


This disease is horrible.  It is uncertain.  It is uncurable, by man’s standards.  I hate it but I’m reminded of my sweet friends Mr Cliff and Ms Jan… I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine*  It does not say “be joyful when things are great and everyone is behaving and healthy.”  It says to be joyful ALWAYS.  Be thankful in ALL circumstances.


So…what am I thankful for?


He is alive.


He is with us.


He has an amazing support group.


He has doctors who are going above and beyond.


We get the same nurse for every treatment.


I have a great relationship with his mom.


I am able to email his mom and keep her up to date.


My sisters.  My brother.


My parents and my mother in law.


The support of so many people that I know and love and that I don’t know.


A wonderful church, who prays for him.


All our prayer warriors.


Kids who see a need and meet it.


There is so much to be thankful for………….even on the bad days.


Another Update **This was from 12.10.17**

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It has been 6 mths since Hunter was diagnosed with Opsoclonus Myoclonus Syndrome. It has been a LONG HARD road.  I cannot even describe how hard it is to watch him, day in and day out.


Everyday is hard.  I cannot even remember what it was like when he was “normal.”  Where he was 98% potty trained, speaking well, able to eat, sleep….just being sweet.  Now, our days are filled with Parkinson type shaking, slow and methodical speech, hypersomnia or insomnia, not eating well, not drinking well, rages that are beyond a 3 yr old rage.  His eyes dancing, falling all the time….I mean it is hard.


We are all tired.  Hunter is frustrated.  We are, currently, at the hospital getting another round of IViG therapy.  It is a 7-10 hour IV push.  If we do it too fast, he is throwing up, lethargic, arms/legs hurting, head hurting, and all sorts of fun side effects.  When we can stretch it out, some, he has some symptoms but not all of them.  He is usually symptomatic for about 7-10 days after treatment.  Then we have about 10 days of little symptoms, and then it gears back up before our next treatment.  He only has opsoclonus when he is tired…..but within 30 minutes of starting the IV, his eyes started dancing.


Our attending physician (pediatric neurologist), spent a lot of time with us, today and for that, I am grateful.  He listened to my fears, we talked things through, he was as encouraging as he can be with me and he is wonderful with Hunter.  This disease is 1 in 10 million…………most doctors, nurses, ERs, or pediatric neurologists never see this in their lifetime and there is no cure because we don’t always know the reason for onset.  Most times is neuroblastoma that is encapsulated within the chest cavity.  It can and is removed but it does not stop the symptoms.


There is a treatment that we are adding.  ACTH (a mega type steroid that helps your body to produce the hormone cortisol).  It is a beast.  Side effects sucks.  We will do that in combination with IViG (immunotherapy) and Rituximab (chemo).  We start this new drug in January, so we shall see. It is hard to administer (IM shot) and it is hard to get off of.  The longer my son has these OMS symptoms, the more it takes affect on his brain and causes permanent damage.


One day, there will be a reason for OMS and there will be a cure….heck, it could be Dr. Sweeney who finds the cure, on Hunter….who knows.  I’m thankful for the knowledge of Dr. Wendy Mitchell and her consult with our case….just because she is kind and she has seen a lot of these patients.  I’m thankful for our OMO nurse, Kim………., Dr. Sweeney for listening, emailing me back, wanting all information.


God is good….even in times of trials and pain.  He is teaching me.  He is refining me.  He is telling me that I do not control every aspect of life and I cannot control OMS, but He can because He is bigger.


May a cure be found.


Any questions……..please ask!


OMS: 3 mths Later

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Here we are…almost 3 months into our OMS journey (Opsoclonus Myoclonus Syndrome).  It has not been the easiest time.  We spent about 2 weeks, at onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital). During that 2 weeks, he had 8 high dose steriod treatments and 1 high dose IVIg treatment.  Once we were released, we went back a month later and we got the first Rituximab treatment.  In 2 weeks, we went back to get the next dose of Rituximab.  We will go back in January to get the 3rd dose.


The steriods were to get the inflammation down.  The IVIg is immunotherapy and it replaces the good stuff in his body.  Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain.  The first dose killed off the majority of them.  The second dose killed off the baby ones.  We were hoping remission would come after that second dose, but sadly, it has not.


Hunter still walks around like a drunkard, basically.  He walks with his feet out, like a duck to steady himself.  Stairs are still a challenge.  Mornings and after naps are still filled with uncertainty as to how he will be.  He is more tremulous during those times and when he is doing something that has focused movements with his hands (ie holding a fork/spoon, pencil, coloring, etc).


He is still highly emotional.  I know that he is 3 but it is almost like have 100 kids that are 3, at the same time.  It is exhausting.  He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well. There is not an in between. His eye is still turned in (apparently that is normal for OMS kids) and they still twitch….all the time.  It is so weird.


We start monthly IVIg treatments next month.  Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours.  Our prayer is still remission, of course.  Our goals are to continue either/or (or both) get a mobility service dog for him and we still need to raise money to redo our downstairs bathroom to make it more accommodating to him when/if the need arises for constant use with his walker.


I do not know what the future holds, but I do know the One who holds the future in His mighty hands and I will choose to trust and obey…………




Going the Extra Mile

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When Hunter had his second round of Rituximab, his first round was 2 weeks prior and it did not yield the results that we had hoped it would yield.  We did not see Dr. Sweeney (or any doctor for that matter) during that first round.  This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.


I was able to ask many questions to Dr. Sweeney.  I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand.  He has a heart for children.  Any single man who knows the theme songs to ALL the disney movies and ALL the characters of each of those movies, is a man who is in tune with his audience of kiddoes.


I understood that we would know if this course of treatment was going to work within the next two weeks.  Hunter still has residual steroids in his system, as well as, IVIg.  In two weeks, though, all of that should be out of his system and all remaining B cells should be killed off by this last Rituximab treatment.  Then….we will either see improvement (aka remission) or we will need to rethink the course of action that we need to take.


In the meantime….we know his immune system is comprised.  To help with that, when we are out in public or around sick people…I went on the hunt for some face masks for children.  I could not find any.  I did get a few adult sized ones from my son’s orthodontist, but nothing that would fit his face.  I finally went to my “go to” place….Amazon.  Oh….I love amazon.  I found what I was looking for and they work perfectly (though he hates them).


My next course of action was to help ease his anxiety about going to the hospital.  Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/man handled until I just about went all Hulk on them. Then…we met the IV team.  Oh.  My.  Stars.  Let me just tell you….they are all angels sent from heaven.


Maybe I went overboard….maybe I am coddling him. He is 3. He is my baby. He did not ask for any of this to happen and frankly… this point….within reason….the child will get whatever he needs to help him through this process.


The Rogue Zebra Has Been Caught and Named

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After almost 2 weeks of being in the hospital and having every single test run on him, we were beginning to feel the effects.  I was blessed by so much.  We had great nurses, attentive doctors…my sister arranged for her friends to bring us food and snacks.   My niece came visited, gave me breaks, brought food and toys.  My daughter came up and brought me coke and toys for the baby.  My uncle’s wife came bearing TONS of food and toys for Hunter.  I was blessed.

We continue to be blessed BUT we wanted a diagnosis.

We wanted answers.


Why was he shaking so violently?


Why were his eyes twitching all over?


Why is he sleeping so much/not sleeping at all?


Why couldn’t he walk?


Why did he scream when I stood him up?


Was he in pain?


Why couldn’t he sit up?


Why did he lean to the left, so bad, that I had to barricade him in?


Why couldn’t he chew/swallow?


Why?  Why?  Why?


I got him in the floor and we went for our daily “let’s make our legs work” walk around the nurses station.  While we were walking, we saw Dr. Sweeney and his team pow-wowing about our case.  I told them all not to talk to him or make direct eye contact because now, he was terrified of all people in scrubs, with white coats, or stethoscopes. Everyone just kept on talking and while they were talking, they were watching. We had to walk in between the doctors to get through, so it gave everyone a great idea of how he was progressing or regressing.


Hunter noticed Dr. Sweeney and he stopped and spoke to him.  He told him that he liked him and he needed to come and visit him sometime (cue heart melting)….it took him a while to get that sentence out because his voice quivers and he has to really think about his words before they come out of his mouth.  Dr. Sweeney said that he was on the way and by the time we got to our room, he would be right behind us.


So, we headed back to our room.  We made it to the chairs outside of our room because when we approached our door…he began to cry saying he wanted to go home and not go in there anymore.  Broke my heart.  I didn’t know what to tell him.  We parked outside the room and watched the people walk by to help ease him.


Dr. Sweeney and his crew came up and I told him of his regressions and that by the third high dose steroid, he had stopped tremor-ing so badly, but that he is sort of stalled.  He still struggles with walking and his eyes were everywhere.  With his symptoms list, with his regressions, with his body’s response to the steroids…Dr. Sweeney was completely confidant in diagnosing him.  He said that the entire neuro team had gotten together, that morning, and reviewed everything, and collectively, they came up with this diagnosis.


Hunter has Opsoclonus Myoclonus Syndrome or Dancing Eyes Dancing Feet Syndrome. These are a good set of videos as to how Hunter is right now.  It documents the truncal ataxia, the walking, the rages, fine and gross motor skills.  Click HERE to view them all, if you are interested.  It is INCREDIBLY rare.  There is not enough known about it to have a cure, so this is something he will have for the rest of his life.


3 Ways OMS Can Occur


    • It could have been caused by a neuroblastoma (cancer) that his body recognized.  Once it is recognized as being “foreign”, the body produces B-cells that violently attack the cancer so that it is reabsorbed in the body.  Those “aggressive” B-cells do not just die off after the cancer is reabsorbed…it begins attacking the brain at the cerebellum (the part of the brain that controls your body movement) and the frontal lobe (which controls your moods).


    • Idiopathic (meaning it came from a virus)


    • It is a precursor to neuroblastoma (cancer) that can show up with the next few years.


We will be doing MRIs, CT scans, blood work, PET scans and urinalysis often to make sure there is not minute cancer hanging out.  We have had 8 rounds of high dose steroids, 1 round of IVIg immunotherapy, and will have a total of 3 rounds of Rituximab.  **Edited to say that, as of today (2.22.18 we have had 3 rounds of Rituximab, 7 IVIG rounds, daily ACTH shots, daily antacid, iron supplements, and sleeping medication).


So far…we have seen little change.  We have good days and bad days.  We are all adjusting to our new normal and learning life.  I’m thankful to the doctors who heard me and were proactive in finding his diagnosis.  My prayer, of course, is for complete healing.




Prayers are appreciated.