Newly diagnosed and need answers?

When my son was diagnosed with Hemiplegia, I was very grateful to have Google! He was born not too long after Google took over as “THEE” search engine and pushed AOL and Yahoo to the side. It was on Google that I found the ultimate support resource for parents with hemiplegic kids. It’s called CHASA and this acronym stands for Children’s Hemiplegia and Stroke Association.

CHASA was started by a mom who needed support and answers after her daughter was diagnosed and there were no parent resources on the web or in the form of a non-profit association that could bring the awareness and support that children with hemiplegia required. This woman most likely didn’t realize years ago that she would be such an integral and important part to each and every newly diagnosed family that would find the help and answers they seek after diagnosis on CHASA. She is a powerhouse and I’m so grateful for all her hard work and dedication to CHASA and her daughter is graduating from college this year!

A few years ago, the CHASA support group transitioned from a List-Serve type forum and switched to Facebook which had a far greater reach and the amount of members joining our private CHASA groups surged. There are CHASA groups for different age levels, for homeschooling, for additional diagnosis like Epilepsy, regional groups for your closest metro, etc. Since my son’s diagnosis, we were just handed a diagnosis and that was about it. No doctor, not his neurologist or primary care doctor could tell me what to expect with my child. Some obvious things like possible speech impairment and delayed walking were addressed, but no mention of swallowing issues, sensory issues, sleeplessness, chronic constipation, highly susceptibility to respiratory infections, ADHD, and the multitude of complications that arise from traumatic brain injury. CHASA is where parents, new and veterans alike of the hemiplegia journey congregate and compare notes about chronic issues, suggested therapies, new inventions, recommend hospitals and doctors, or simply to vent about the grief and frustrations of parenting a special needs child. It is a magnificent and an all-encompassing resource for information and support and without CHASA, I would have been lost in this complicated journey that we embarked on to help our son rehabilitate from his massive stroke.

This summer will be the second time that we attend the CHASA national retreat which will be hosted in Kentucky this year. We attended in 2009 when my son was two, so he doesn’t remember it and is very excited to go spend a few days with kids just like him. I attended in 2009 in Alabama for my own piece of mind and I got to meet and attend presentations where former CHASA kids were now teens and adults and I knew my boy would be okay. The comfort and relief that retreat brought me was exactly what I needed at the time. This year we made it a priority to attend because my son is now 9 years old and his disabilities are more pronounced and making friends is very difficult for him. He is very shy, but I believe that around kids just like him, he will break the ice more easily and be himself. He is the sweetest kid, a goof ball, and super observant. You wouldn’t suspect that only half of his brain works, he’s a smart ass to boot!

Sadly, everyday CHASA welcomes a new family with yet another child who survived a stroke and are searching for comfort and help. I’m just glad that CHASA and its large group of parents are there to support all the new and existing families 24/7.

Please checkout CHASA on its website: www.chasa.org

On Facebook, search for “CHASA” or “Children’s Hemiplegia and Stroke Association”

The Silent Battle

I am bursting with blog posts and it’s been a long while since I have posted to Hemi Heroes. As a mom, I tend to put my needs, wants, desires, and dreams last—way behind everyone else in the family, even the dogs!

Mothers are natural care takers and would rather make sure their family had everything they needed before they even take a potty break! So in the spirit of my dedication to everyone else, I just neglected my own goals and priorities, yet again. Today, I’ve reminded myself that I can’t get lost in the rabbit hole of being a special needs parent and sometimes we need to pause, take a deep breath, and hit reload for a fresh outlook.

Towards the end of last year, the Universe sent me signs that were hard to ignore. I was done feeling sorry for myself, found inspiration, was motivated to accomplish my goals, and achieve my dreams. I felt a rush of hope and contentment and I had felt this before, but something else always pops up to knock me off this fabulous feeling. Lucas, my youngest child, not only has Hemiplegia, but Epilepsy as well. He handles everything so gracefully, but life is always an uphill battle for him, fighting on two fronts of disabling conditions. So what knocked me off my high this time? Well, it was a new addition to his epilepsy. First, I’ll fill you in with Lucas’ epilepsy back story to put things into perspective.

When Lucas was just over a year old, we flew to San Francisco to meet with Dr. Heather Fullerton, she is the Director of the UCSF Pediatric Stroke and Cerebrovascular Disease Center at Benioff Children’s Hospital and a nationally recognized expert in pediatric stroke. At the time, we were still seeking hope and answers and part of that was Lucas’ risk of seizures. She had said that based on his MRI and where the stroke damage occurred, he had a 30% chance of having seizures, but that if he hadn’t had any in the first 12 months of his life, then his risk went down significantly. Well at the time, that was fabulous news and my husband and I were able to breathe a collective sigh of relief. Lucas had been seizure free thus far and 14 months old.

At age 3, he had his first seizure. We weren’t sure it really was a seizure; he woke up in the morning and stared off, turned pale, and started gagging and coughing up foamy saliva. He also seemed lethargic, but it was so quick and it really didn’t seem like a seizure. We took him to the emergency room and they said he looked fine and to follow up with his neurologist. Lucas’ neurologist told us to keep an eye out for more abnormal activity. The next “seizure-like” episode happened exactly a year later, the same symptoms and once again questioning if it was really a seizure. This happened once more exactly another year later. By the beginning of 2013, Lucas had caught the flu and he began having complex partial seizures regularly, about 2-3 per week. An EEG that April confirmed his epilepsy diagnosis and he began taking a drug called Trileptal (oxcarbazepine) because it was the most effective in treating complex-partial seizures and had the least side effects in children compared to other anti-epileptic drugs.

At first Lucas had no side effects, but he still had seizures. He began to gain weight, which was a positive outcome because he was severely underweight like many kids with cerebral palsy. We also began to notice that his speech had slowed down and he began slurring his words. He was sleeping in a lot and the seizures were still occurring. He also started having different kinds of seizures and these occurrences never happened prior to medicating with Trileptal.

In December of 2013, I made the decision to slowly wean him off Trileptal, I felt it did more harm than good. I had just lowered his dosage a tiny bit and looking back it most likely wasn’t the trigger, but Lucas woke up one morning having a large tonic-clonic (aka Grand Mal) seizure. To say it was scary would be an understatement! My hubby was traveling and I had to experience it all alone. Lucas was shaking all over, he was groaning and making these gurgling sounds of pain, his heart was racing and his breathing was slowing down, he turned pale and then began to turn blue. I knew he would stop breathing and with trembling hands I called 911. It felt like an eternity, but the paramedics arrived just as the seizure had stopped. I feel sick to my stomach even thinking about the details of that morning and thankfully Lucas has no memory of any of his seizures, but it was one of the scariest moments of my life. Of course, I was scared and continued to medicate him with Trileptal, blinded by the fear of losing my boy. We had to keep increasing the dosage and the seizures stopped, but the side effects began to get worse. He became very hyperactive, restless at night, he couldn’t remember simple things like if he had been to a place the day before, and he couldn’t retain anything he was learning. His quality of life was on a downward slope. I then heard the term “ESES” on a Facebook group for parents with hemiplegic children and it sounded a lot like Lucas could have this rare epileptic syndrome.

ESES is an acronym for Electrical status epilepticus during slow-wave sleep (pronounced “ee-sus”) and it is a rare epilepsy syndrome. In children with epilepsy, less than 1% have ESES. It usually appears in mid-childhood between the ages of 6-9 years old. It is also called “continuous spike-wave of slow sleep syndrome” and the cause of this syndrome is not known, nor is there a direct treatment for it with a 100% cure rate.

According to an excerpt from http://www.epilepsy.org/uk, “the first sign of any problem is usually that the rate of a child’s learning appears to slow significantly. Many of the children begin to have problems with either the understanding of speech and language (this is called receptive dysphasia) or expressing their own thoughts (expressive dysphasia) in the form of spoken language.

Epilepsy develops and different kinds of seizures can happen either during the day or during sleep. Many children will have absence (blank) seizures, some myoclonic (jerk) seizures and others will have partial motor seizure (seizures involving jerks of one side of the body only) particularly during the night. Some children will not have any seizures during the night.

However, despite the fact that sleep patterns are often severely disturbed due to the seizures, children with ESESS usually wake the next morning feeling quite refreshed.”

This syndrome is frightening because patients with ESES are most likely to die in their sleep from SUDEP (Sudden Unexpected Death in Epilepsy) and ESES causes severe regression cognitively. The irony is that this syndrome usually clears up in children by the teen years, but the damage would be vast and irreversible to a child’s cognition and intelligence.

So in June 2015, we checked into Hotel Rady (our awesome children’s hospital in San Diego) for a 5-day/24 hour in-patient EEG. After the first night, his epileptologist said that his EEG showed it wasn’t quite ESES yet, but was heading in that direction. His doctor added another seizure medicine called Onfi (Clobazam), which is a “benzo” aka Benzodiazepine, in the same class of drugs as Valium.

Onfi has showed promise in a good percentage of research participants that had been treated with it for ESES, so it was worth a shot. Lucas seemed better almost immediately! He had never slept so soundly, he was seizure free, and he seemed to be learning better. I felt we had finally got an answer to the gnawing feeling that something else was wrong with our son. He seemed to build tolerance to the drug because he began being restless again in his sleep, so we gradually raised the dosage. It always helped at first, but by October he started having staring seizures, a few complex-partial seizures, and the worst part was that he was a walking zombie. Quality of life was zero; he was slurring his words, clumsy, tripping over his own feet, and sleeping a lot. I knew something was severely wrong and we got in immediately to see our neurologist and Lucas had another 24 hour EEG right before Christmas. Lucas’ neurologist came in the next morning and said that he had full blown ESES. She told me that she thought I was just being a worrisome mother and she fully believed she would come in and tell us that it was nothing, but she was so sorry to say that it was indeed ESES. At least, my maternal instinct and special needs mom super powers were sadly on par again.

So what was the new course of action? Well, he had failed two medications and ESES has not been well researched because it’s so rare, but there were a few courses of action to take treatment wise. Just like seizure meds, every patient reacts so differently to treatment and it either works or it doesn’t. Since Onfi was the first course of action and failed, the next step would be high-dose steroids. Prednisone was what she prescribed and she warned me of the significant side effects he could have, but most were uncommon in children. With Christmas just three days away and feeling so overwhelmed, I needed to do my own research. We began to wean him off Trileptal immediately and it is a drug that is known to cause or exacerbate ESES in some patients. I had to wonder if that was the cause of all of this. The Trileptal wean was awful for him, he stopped eating, lost weight, was pale, was completely not himself. His last dose of  this drug that caused him so much harm was on New Year’s Eve.

I really wanted to avoid steroids and repeat an EEG in a few weeks just with the Trileptal out of his sytem, but I knew that Lucas’ neurologist would think I was being difficult and our medical insurance company probably wouldn’t approve multiple EEG hospital admissions. I spent hours reading medical journals and university research studies on ESES and our best hope was steroid therapy. If the steroids fail, he would be facing the possibility of brain surgery, specifically a Hemispherectomy.

I was so hesitant because Lucas is immune deficient and steroids suppress immunity so much that a common cold could land him in the hospital or worse. January is in the thick of cold and flu season, so we pulled Lucas out of his class days. (Lucas attends a charter school that is a hybrid-homeschool program, so he only attends class 2 days per week.) His school was understanding and we started Prednisone at 60mg/day on January 4th.

This dose is super high for an adult, let alone a child. I anxiously awaited the side effects, but the worst side effects at this point were trouble sleeping and rapid weight gain. He was skinny to begin with and to-date he has gained just over 10 pounds in 8 weeks and his clothes are getting snug! We added Melatonin to help him fall asleep and that has been a success as well. We tapered down to 40 mg/day after two weeks, and then 30 mg/day after another two weeks.

On February 16th, we were back at Rady for another EEG and this result was so very important, either the Prednisone was working (it was only a 50/50 chance) or it was not and we would have to pursue surgery. I prayed, begged, and pleaded with God, the Universe, and all of Lucas’ angels to let this drug work. The news was good and the Prednisone was working! The ESES was gone, but there is still abnormal activity only on the left side (the damaged side), but none on the healthy right side. This was great news because it was a good indication that he could be a surgical candidate in case we needed to pursue that route in the future.

We tapered down the steroids again to 20/mg per day and last week we met with his neurologist to discuss the full EEG results. She showed us the December EEG vs. the February EEG and they were like night and day. One was ugly and jagged with spikes all over it and his last EEG was calm and almost flat line in comparison. I was cautiously and optimistically happy! Why was I not jumping up and down with excitement, you ask? Once he tapers off the medication completely, there is a significant chance of relapse and it’s not an option to have a child on steroids for an extended period of time.

I am happy to be able to pause and thank God, everyone that prayed for Lucas, and of course his brilliant and caring doctor for this small victory. The big bad wolf of ESES has been scared away for now! Lucas is doing well too-he’s seizure free, alert, better memory retention, and seems more like himself before epilepsy entered our lives. I’m thankful to have more answers and an action plan for his treatment and for now we continue enjoying each beautiful day bestowed upon us.

 

My awesome and brave son, my hemihero! (Part #3)

Here is the “big” finale to Lucas’ harrowing birth story and the beginning of the long journey we embarked on called Hemiplegia.

Where we last left off, Lucas escaped the NICU seemingly fine after the first 8 days of his life, of which 4 were on a ventilator and a miracle drug saved his life. My hubby and I could finally breathe a collective sigh of relief and fall in love with our little boy. I look back and I’m glad that I didn’t know that there was anything wrong with our new baby, it would have been too much to process and the grief, stress, and anxiety that would have hit me like a runaway train, would have been so overwhelming.

Lucas seemed fine, but then he was also very cranky. My other two children were pretty easy going babies and we chalked up Lucas’ orneriness to colic perhaps? He also didn’t sleep much and we found that very odd for a newborn and he had trouble breastfeeding. I soon gave up on that and he would also have a hard time with the bottle. In my new mom brain, I didn’t even imagine that these were all signs that something was wrong. I remember being sleep deprived and frustrated with a baby that was doing the opposite of my other two kids. That should have been a flashing billboard of abnormality, but again denial is a stronger emotion then acceptance.

The early weeks of his life were spent consoling him and of course getting to know our little guy. At 10 weeks old, my hubby and I were attending a convention in Las Vegas and brought the baby along because my mother-in-law was living there at the time.

We left Lucas with her for one day and when we went to pick him up that night, she said she had noticed that his right hand was fisted and didn’t open up like the other hand. I thought she was overreacting and being a worrywart granny because newborns can’t control their hands well and are still learning more coordinated movements. Yet, now we know that Lucas’ “Mim” was absolutely correct that something was wrong and that was the first clear sign of hemiparesis.

At 5 months old, he seemed to be hitting all the milestones like smiling, cooing, rolling over, etc. We had a follow up with the hospital NICU and Lucas was seen by an occupational therapist. She evaluated him and I brought up the hand issue and she replied by saying, “Yes, he definitely has some kind of palsy.”

Wait! What did she just say? Palsy, isn’t that term part of other bigger issues? I had heard that word, but never really cared to learn more because it wasn’t part of my world. As soon as the visit was over, I grabbed the fairly new invention of a smart phone and googled “palsy”. There was Erb’s Palsy, Bell ’s Palsy, and Cerebral Palsy, but what the heck did these conditions have to do with my baby? We found a top neurologist at our local children’s hospital and it was an 8 week wait to just get an initial visit even with super awesome PPO insurance. Those 8 weeks of wondering what was wrong with my baby were disconcerting to say the least.

Finally the day came for Lucas’ first of many visits to a neurologist and she confirmed that he definitely had some paralysis, but we needed an MRI/MRA to confirm. Another month went by to get that done and then it came, the results that would change everything. The MRI showed a massive stroke that basically wiped out his entire mid left brain. Imagine cutting a honeydew melon in half and taking one half and then scooping most of the melon out, only leaving some of the flesh in the front and rear sections, but everything else was scooped out to the rind. Not much left is there? That is what happened to Lucas’ brain and this part controlled movement. We were flabbergasted because he was kicking and moving all his arms and legs and didn’t seem like a child that suffered a massive stroke. We were told lots of things that day like neuroplasticity would help the brain rewire, need to start therapy, blah blah blah. It all became a blur because now I had to go home and research this diagnosis.

He was diagnosed with right-side hemiplegia, but what did that mean and was that the same as hemiparesis and what was an infarct, a CVA, an ischemic stroke, and did he also have cerebral palsy? The doctor basically diagnosed and confirmed one thing, but that was it. We were told to just take note of his progress and keep up with therapy. No further details, no future outlook of possible side effects of paralysis that would severely affect Lucas’ development and life.

Where was the instruction manual to all of this, your baby has hemiplegia, now what?

Luckily for me, there were other parents who already walked the path we were embarking on and they would become and still are the ultimate resource of in-depth experience and knowledge of what to expect with having a little stroke survivor.

My awesome and brave son, my hemi-hero! (Part #2)

Ah, Happy New Year! Hope 2016 brings us all more health, love, and success!

Lucas had some setbacks with his epilepsy in 2015, mainly a definitive diagnosis of ESES (Electrical Status Epilepticus during Sleep) that has really switched things up for us, but that is a whole other post for my readers to look forward to.

So to continue to Part #2 of Lucas’ story and why he’s my Hemi-Hero, without further ado…

Where was I? Oh, yes, back at the fact that I knew that something was not right with my baby boy.

He was born screaming, almost as if he was in dire pain. Being a veteran mom, I knew his screams were not typical of a newborn, especially because he wouldn’t stop crying. My first two kids did not cry when they were born, they kind of just came out and looked at me and said, “Hey mom, I’m the stranger that has been living inside your body these past 9 months, nice to meet you!”

Lucas was 8 pounds and 7 ounces and his APGAR scores were 9’s, he was a week shy of the 40 week mark, so basically full-term and the OB and the nurse on-call didn’t suspect anything was wrong. I noticed his nail beds and lips would not “pink up” in the usual time a newborn would and he rotated between blood curdling screams and almost falling asleep, but it seems like he was passing out. In my mother’s heart, I knew this baby was suffering. We spent about 2 hours in the labor & delivery room recovering and then they moved us to a suite. He still seemed to struggle, so I asked the nurse to take him to the nursery to be checked out further by the neonatologist.

My hubby and I passed out a while after and were awoken at 4 a.m. by the nurse and told that we shouldn’t panic, but our boy was in the NICU and had been placed on CPAP. While on the machine, he also stopped breathing twice and that was who the “Code Blue” was for. We rushed to the NICU and that was the first time I saw him in the incubator hooked up to all sorts of machines, needles, and wires.

That first day of his life, he only kept deteriorating and they didn’t know why, but suspected a few things. Tests were performed, labs were drawn, and we had to await the results. Later in the day, we were told that he was the sickest of all the babies in the NICU and they were doing their best for him. By now he was on a ventilator and with each passing hour they had to keep turning up the oxygen levels, little did I know that was really bad news. I thank God that I was naïve to what was really going on at the time because my anxiety and freak-out mode would have increased 100 fold!

At just about 24 hours old, the doctor took us into a separate room to discuss what was going on. It’s the room where they give you the really bad news and I felt like we were on an episode of “ER” or “Grey’s Anatomy”, it was surreal. They told us that Lucas had Persistent Pulmonary Hypertension of the Newborn (PPHN), Patent Ductus Arteriosus (PDA), and a Patent Foramen Ovale (PFO). The PDA and PFO were considered “congenital defects”, which is a fancy way to say he was born with these issues. He was currently on his way to 90% oxygen and was too critical to move to the children’s hospital NICU where he may need to get onto an ECMO machine. They wanted to give him pulmonary Surfactant which was usually used in preemies to help them breathe and was not usually effective in full-term babies. Lucas had a 50/50 shot of this medicine working, if it didn’t I don’t think he would have been here with us today. Within 30 minutes of the drug coating his lungs, it began working. We prayed to God and our angels in heaven to help our boy and his oxygen level was able to be reduced to 30% within 30 minutes of administering the treatment. At 100% oxygen, babies can have serious brain damage and are at high risk for going blind and deaf, thankfully I was only told that by a nurse after the fact. My hubby and I were able to breathe a momentary sigh of relief because this medicine was working and we had some hope that Lucas would pull-through.

He remained on the ventilator for 4 more days, each day his oxygen was being reduced, his blood gases were coming into range, jaundice was treated, respiratory rate and blood pressure were stabilizing, and his echocardiograms showed that the PDA was finally closing on its own without the need for surgery. He spent 8 days in the NICU that felt like a sad and scary eternity, but I know that other parents have spent way longer holding vigil for their children in the NICU and it’s an experience we all want to forget and just bring our babies home.

Upon discharge, they said everything had resolved and they expected there would be no long term damage, little they did or we know that these doctors would be so wrong.

My Awesome and Brave Son, my Hemi Hero! (Part #1)

My Hemi-Hero, my son Lucas, is now just over a month shy from turning 9 years old! I feel like the years flew by and yet it seems like an eternity too!

Lucas is my third child and my baby; he has always been full of surprises. My hubby and I only planned on having two children and when we had a girl and a boy, we decided that two kids was enough. We waited until our older son was just over a year old and my hubby was set to have a vasectomy. About two days before his procedure…well let’s just say we had some fun and he decided in a split second to not use our usual form of contraception at the time, the method of withdrawing. I was furious and he argued what were the odds that I would get pregnant, well three weeks later when my period was M.I.A. and my pregnancy test was positive, the odds were pretty good!

I have to admit that not only was I furious, but mentally I had prepared myself for a life with just two kids and I had just started a career that I put on hold for my first son. I did decide to keep the baby, but I resented this fetus. When we found out we were having another boy, I didn’t need any baby items because my older son was just a year old and I didn’t really want to celebrate this baby’s impending arrival. My pregnancy didn’t have any complications or wasn’t unusual, very much on par with my other two pregnancies. I was turning 26 right before Lucas was due to be born, so no issues with me or the baby were expected.

When I was about 32 weeks, it hit me like a ton of bricks- I went into full nesting mode! I was getting excited about our new addition and got everything ready for our new kid. I was finally making peace with putting my career on hold a while longer and having another little boy to love.

A week before my due date, my OB/GYN asked if I wanted to be induced early because of my borderline gestational diabetes and history of large babies, my first child was 8 days early and weighed in at 9lbs., 6 oz.! I said, “Heck yeah!” and on January 26, 2007, I checked into the hospital to be induced. Labor progressed slowly because I was holding out on getting an epidural, but the tension in my body during contractions was not allowing my cervix to dilate fast enough, so I caved and got the epidural. Then things progressed quickly and a few pushes later at about 10:20 p.m., Lucas entered the world.

I knew immediately something was not right…

Where to Begin?

Ideally, a new blog would give you the background that inspired the blog, a poignant story and I promise there is indeed a story to tell! This blog and the many postings to come may not be in chronological order, but more in a spontaneous fashion where inspiration could strike at any time. Some days, I am wildly proud of the things my son has accomplished and other days are a fresh slap on the face, reminding me again that my son isn’t quite a typical child or that people can be cruel, but we both keep trekking forward, conquering hemiplegia everyday!