Epilepsy Awareness Month

November is Epilepsy Awareness Month. Never in a million years did I ever think this would be a part of my life. Even with all of Conner’s challenges in the NICU, not once did I worry about seizures, however knowing what I know now, I should have.

If you have followed Conner’s journey, you may know that he has Periventricular leukomalacia (PVL). PVL is a type of brain injury that affects premature infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. We knew Conner had PVL vey early on in his NICU stay. We also knew that if he had it, there was nothing that could be done to change it, fix it or improve it. It simply was what it was. In addition, I was worried about Conner surviving that day and couldn’t even begin to think about what this meant for his future. After all, we had to get through the NICU to even have to opportunity to worry about his PVL.

In January 2017, I noticed Conner’s eyes watering while I was changing his diaper.. It was unusual for him, but I brushed it off. A couple days later Conner had an episode that involved his eyes and mouth along with the eye watering I had seen just days before. I had no idea what it was. I had never seen a seizure before, but like many, I thought seizures were more violent, shaking of the body, eyes rolling in the back on your head, etc. I decided to video this episode and I am so thankful I did. Conner’s pediatrician got him in right away and she was concerned enough with what she saw on the video that she got Conner an EEG with his neurologist the next day. However, the same thing happened later that day and after some encouragement from a couple trusted people that know Conner well, I decided to call his pediatrician again. This time she agreed it would be a good idea to direct admit Conner to the hospital.

Other concerning signs:

• Stopped smiling

• Stopped talking/making sounds

• Slept more - fell asleep at times he wasn’t normally sleeping

• Overall was not himself

Conner was hooked up to a video EEG for about 18 hours. I was required to push a button anytime I thought he was having a seizure and I was instructed to write down the time and what it was that I saw him doing. Eventually I was told Conner’s EEG showed Hypsarrhythmia. So what is that? I had the same question (and the resident that relayed this information to me was unsure as she had never heard of it before). After I figured out how to spell it, I learned that Hypsarrhythmia is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal brain electrical activity shows clear separation between each signal and visible pattern. Hypsarrhythmia is synonymous with Infantile Spasm.

Typically Infantile Spasms look like a startle (easily confused with the startle reflex in infants) or head drops (which can be mistaken for lacking head control). Conner’s presented differently and were very subtle.

I had never heard of Infantile Spasms, but a quick google search made my heart drop directly into my stomach. I was speechless. Everything you read on the internet about infantile spasms is terrifying, hopeless and so incredibly hard to read as a parent of a child with that diagnosis. I didn’t know what was next for Conner, but I remember fearing for his future and ultimately his life.

Conner’s neurologist came to talk to me and we decided that the best option would be for Conner to get treatment at a different facility. We had already selected Cook Children’s for Conner’s next bowel surgery (which was put on hold to treat infantile spasms) and conveniently, Conner’s neuro had some connections to Cook. He was able to get Conner in the following week. In the mean time, I did as much research as I could, I called other facilities in hopes they could get Conner is sooner, etc. Looking back, I was so lost. I was starting to feel hopeless and so unprepared for the life I was living. Honestly, who can prepare for something like that anyway.

Once at Cook Children’s we met with the neurologist (who is easily one of our favorite specialists now) . He ran through treatment options and, of course, none of them came without major life changing side effects. if that wasn’t bad enough, the highest percentage of one of the medications stopping the infantile spasms was about 50%. I’ve never been a gambler, but I felt like I was about to gamble with my son’s life.

Eventually we landed on a high dose steroid called ACTH for Conner’s treatment. The plan was a two week course of ACTH injections followed by a 6-week wean with Prednisolone. At that time, ACTH had the highest chance of stopping the spasms (about 50%). It also came with high blood pressure as a side effect. This was a big concern because Conner already had high blood pressure (because he has one functioning kidney). He was on medication for it, but thankfully it was a low dose at the time, so we knew we had room to increase if his blood pressure became more of a concern. Conner’s neurologist actually suggested we try a different medication because of the high blood pressure concern. We felt ACTH was worth the risk and we knew Conner’s nephrologist was already on board with closely monitoring him through treatment. Listen to everything doctors have to say and then trust your gut. You know your child best.

I conveniently breezed by the fact that ACTH was an injection. Conner was inpatient for the first two injections. The nurse did the first one and showed me how to do it. Then the following day I received training and it was my turn to prove I was willing and able to give Conner this injection everyday for 2 weeks. I did it…I cried…Conner cried, but I did it! It got easier the next few days as I knew that what I was doing, while it hurt Conner in the moment, was his only hope for a better quality of life.

Another concerning thing about ACTH is the cost. I recently read an article from CNN that said ACTH costs $39,000 per vial…a 5 ML vial at that. Conner went through a little over two vials in two weeks. Thankfully our insurance was very helpful with covering the medication and getting it to us ASAP. Cook Children’s supplied us with enough medication to get by until our shipment arrived from insurance.

Side Effects:

• Blood pressure is a real side effect. It happens and it can get scary if it is not very closely monitored. Conner’s nephrologist saw him up to 3 times a week depending on how he was doing.

• The moon face…I knew this was coming, but it still surprised me. Conner’s face was HUGE. He gained about 2lbs on steroids and I swear 95% of it was in his face. His skin was stretched out, he looked incredibly uncomfortable and he seemed to have a little harder time breathing.

• Feeding - this is something I was not prepared for. Conner’s appetite increased, but overnight it plummeted to refusing anything by mouth. I started to feed him with a 5ml syringe just to keep him hydrated. I have no idea how he stayed hydrated, but blood work showed he was.

• If refusing to eat wasn't hard enough, what he did manage to take by mouth was thrown up. Talk about a stressful time when he had to take seizure medication and a steroid by mouth. He did not have a g-tube at this point.

Conner’s outcome:
About a week into Conner’s ACTH injections, his seizures stopped. His smile began to return, he laughed and was more himself. Of course, if you’ve had experience with seizures, you know that other things like anxiety, fear they’d return, constantly observing your child, etc. did not go away. In fact, I think all of those things got worse for months. It wasn’t until recently did I feel like I could somewhat relax a bit and not watch Conner’s every move. Conner is 22 months seizure free and Conner’s neurologist reminds us that if he is progressing then we should take that as a good sign.

Today, Conner is doing really well. His EEG will always be “abnormal” because of his type of brain injury (PVL). Conner continues to take Keppra and we’ve recently go to an EEG once a year instead of every 6 months. As of now, Conner’s next EEG is October of 2019 and we will adjust his keppra as needed or with any luck, he will grow out of his keppra dose and not require it any longer (wishful thinking).

Worries for the future:
Infantile Spasms only effect infants (as you might have known from the name). However, infantile Spasms can progress into different types of seizures. I am afraid that there will never be a time in Conner’s life that seizures won’t be a concern. However, the longer he goes without a seizure, the better for his over all development and future.

Things to know:

• Infantile Spasms is considered an EMERGENCY. If you suspect your child is having Infantile Spasms (or any seizure), get them in as soon as possible.

• This is the time to advocate for your child. Don’t accept wait and see or “come back if it happens again.” Sometimes an EEG can tell a lot.

• Take video - if you suspect seizures activity, take video, if possible. This will be so helpful to show doctors.

• Do you research on medications and go in with all your questions

• Oddly enough I found the most support for Infantile Spasms from Facebook groups. Here are the ones that I found most helpful.

  • The Infantile Spasms Community Discussion Group

  • Infantile Spasms

Who is the best fit for CME/MEDEK?

Now that you know what Cuevas Medek Exercises (CME/MEDEK) is, lets talk about who is the best fit for CME/MEDEK therapy. Did you miss what MEDEK is? Check out our post here.

WHO?

MEDEK is a great fit for many kiddos - any child with a motor delay could be a good fit. This includes a birth history that puts them at risk - i.e. micro preemies, like Conner. The list includes down syndrome, cerebral palsy, global developmental delays, hypotonia, chromosomal abnormalities, spinal cord lesions or acquired brain injury may benefit from this form of therapy as well. Osteogenesis Imperfecta, and Muscular Dystrophy are a precaution and need to be handled differently.

PLEASE NOTE: it is STRONGLY RECOMMENDED to have a trained MEDEK therapist work with your child to determine if MEDEK is a good fit for them. It is also STRONGLY RECOMMENDED that a trained MEDEK therapist work with your child and provide a home program for you as a parent. Results are better and typically come sooner if the parent does exercises at home, but also not required.

WHEN?

Children can start MEDEK therapy as early as three months old. The earlier a child is able to start - the better. This can allow stronger neuro pathways to be formed. Unfortunately, Conner was not medically stable until this year (2018). He spent 6.5 months in the NICU and had multiple hospital stays, surgeries and seizures in 2017. He would not have been a good fit for MEDEK until this year. There is also an end point for MEDEK. This is based on the size of the child, their abilities and the strength of the therapist. If you have seen any MEDEK videos, you know that the MEDEK therapist is often hands on with the child in some form.

WHAT?

So, what equipment is needed besides a well trained MEDEK therapist? There is a table that is used for table exercises until child is strong enough to move to the floor. Often times kids do both table and floor exercises (like Conner). The floor exercises consist of a set of boxes, beams, boards and cubes. In addition, balls, schemata (rags…a.k.a. shelf liner), silky organza, disks and pipes are used. All of the equipment may sound curious, but if you have ever seen it in action, it makes total sense.

WHY?

I believe MEDEK is very helpful in many ways for Conner, so I know that over the next few years we need to make it one of our biggest focuses because there will come a time that it won’t be a good fit for him anymore. Speaking of ways MEDEK helps - it is not just physical. MEDEK can also result in changes in speech, eating and cognitive alterness. I can without a doubt say that MEDEK has helped Conner in two of those areas. I wish I could say all three, but we have quite a bit of work to do with Conner’s eating. Since beginning MEDEK in May 2018, Conner is saying more words, he is so much more alert and engaged. His vision is improving and he is all around coming alive and interacting in so many areas. It has been really fun experiencing “firsts” with Conner this year!

I will end by sharing an eye opening experience I had this past week when Jo-Anne Weltman from S.M.I.L.E. Therapy for Kids (in Toronto) graciously came to Tulsa, OK. Jo-Anne worked with 7 different kids while she was here. I have found myself being very closed minded when it comes to who benefits from MEDEK. Conner has cerebral palsy and most of the other kids I know that do MEDEK do as well. However, last week I was able to see just how much MEDEK can help kids with extremely different diagnoses. I was also lucky enough to see and hear each parent’s reaction to how their child did in MEDEK. Many had never done MEDEK before and I observed as other parents starred in awe as their child did something they never dreamed they were capable of doing at this time in their life. It was the exact same look I had on my face when I left Conner’s first MEDEK session. I was stunned…confused…yet more hopeful that I ever remember being in his short life. If your child falls into any of the categories listed above, I encourage you to research MEDEK for yourself and decide if you feel it is a good fit for your child. For more MEDEK resources, click here.

What is Cuevas MEDEK Exercises (CME/MEDEK)?

If you follow Conner on Instagram then you have probably seen me talk about Cuevas MEDEK Exercises (CME/MEDEK). I typically refer to it as MEDEK because it is just easier to type and as a mom, I will take all the extra seconds I can get in a day! I should also start off by saying that I don’t claim to be any type of CME/MEDEK professional. I am just a mom that has seen the benefits of MEDEK for my son and I can’t keep it a secret. I want every therapist, every parent, every doctor and every person I pass on the street to know about this life changing therapy option for kids with motor delays.

So, are you wondering what MEDEK is? About 7 months ago, I was wondering this and so much more. What is this form of therapy? Why have I never heard of it? Why has my mom (who is a PT) never heard of it? Why have none of Conner’s therapists heard of it? Why don’t Conner’s specialists know about it? And ultimately, is it a good fit for Conner?

MEDEK is a form of physical therapy used to treat children with motor delays. It was created by Ramon Cuevas in Venezuela between 1971 and 1973. The basic MEDEK assumption is that in a gravitational environment, we require postural control and the ability to pull up against gravity, to stabilize our body in space. Gravity is considered the main stimulus that triggers the neuromuscular system to react. MEDEK relies strongly on the vestibular and proprioceptor systems.

Typical developing children learn to respond to gravity naturally. It is what our body was designed to do. Children with motor delays don’t have that opportunity. MEDEK creates the opportunity for them to learn to respond to gravity and build strength. It also builds pathways in the brain which allows it to become a more natural and learned movement.

MEDEK exercises can be done on a therapy table or on the floor with MEDEK equipment (boxes, boards, cubes, balls, etc.). There are well over 500 MEDEK exercises. Some kids are on the table in the beginning and progress to the floor. Some kids do both table and floor exercises and some kids are doing floor exercises only. Every child is so different and their abilities and progress vary. There is no one size fits all when it comes to MEDEK, but it has the ability to help so many different types of kiddos.

MEDEK does not require the cooperation from the child and generally there is no coaching a child. If you tell a child what to do then they are only performing for you rather then learning what to do on their own thus resulting in stronger neuro pathways. Kids respond in all ways during MEDEK.

A popular way for kids to respond is to cry, but it is important to know that they are NOT in pain. They may cry because it is HARD. Wouldn’t you cry if you were out of shape and in a bootcamp for an hour. I know I would which is why I don’t work out in public! Some kiddos may cry because they are scared. They are not use to the positions that they are in even though they are age appropriate positions. They will soon realize they prefer these new positions over their old positions. It literally opens up their world to new opportunities.

Many children with motor delays have an immature vestibular system. The vestibular system is the sensory system that provides the leading contribution to the sense of balance and spatial orientation for the purpose of coordinating movement with balance. MEDEK is one of many activities that can be helpful for the vestibular system.

So, how do you help your child while they do MEDEK? It depends on your child, but some common distractions are music, videos on an iPad or iPhone, bubbles or creating games during/after each repetition or exercise.

As you may have found in your MEDEK research, it is not well known in the United States. We are on a mission to change that, but it will take time, it will take spreading awareness and ultimately finding therapists ready and willing to get trained in MEDEK so they can start to change the quality of life for some many kids. To learn more about MEDEK, follow OurLIfeAfterNICU and MEDEKAwareness on Instagram or send us an email.

MEDEK

As a mom of a child with a movement disorder, I am constantly searching for new therapies, devices, adaptive clothing, etc. to help Conner (and me) along the way. I am willing to try most anything before resorting to medication, botox, surgery, etc. This mindset is what brought me to Cuevas MEDEK Exercises (CME or MEDEK). 

MEDEK is a mode of physical therapy used to develop gross motor skills in infants and children with movement disorders due to neurological dysfunction. In Conner's case, his is due to his extreme prematurity and periventricular leukomalacia (PVL). MEDEK was developed by a man named Ramon Cuevas and has been around since the 1970s. 

MEDEK assumes that in a gravitational environment, movement and manipulative skills require postural control or the ability to pull up against gravity and to stabilize the body in space. Gravity is considered the main stimulus that triggers the neuromuscular system to react (Source: The Canadian MEDEK Centre).  It is different from traditional physical therapy, but the ultimate goals of independent sitting, standing and walking are all the same. 

We are in the middle of our 6 days with Ester Fink of The Canadian MEDEK Centre. She is working with Conner twice a day for 45 minutes each session. To say that the sessions are intense, is an understatement. Conner works incredibly hard and afterwards he is exhausted. We are already seeing great progress and get encouraged as he proves he is capable of doing something new each session. 

I managed to gain 10 pounds along the way...Thanks, Toronto! 

One thing that struck a cord with me is one of the theories behind MEDEK. We are constantly encouraging and coaching Conner on what to do. However, when we do that, he is merely performing for us rather than moving because he wants to and knows what to do in particular situations. We are biting our tongues each session and Conner is proving that he CAN move and he WANTS to move. He isn't capable of doing everything each session, but Ester pushes him and he is up for the challenge.

We are proud of Conner and his hard work. We are looking forward to seeing how he improves the rest of the week. We feel that this will be a great addition to the incredible therapy that Conner already receives back home. 

Cerebral Palsy Awareness Month

     The month of March isn't all shamrocks and green beer (although my Irish roots would like to think so)! It is also Cerebral Palsy (CP) Awareness Month. CP is an important piece of Conner's journey for many reasons. 

     I am sure everyone has heard of Cerebral Palsy, but what exactly is it? CP is considered a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development. Cerebral Palsy primarily affects body movement and muscle coordination. 

     Being born at 24 weeks, Conner was at an extremely high risk to develop CP.  Furthermore, Conner has Periventricular Leukomalacia (PVL) which is a form of brain damage. Read more about PVL here. In addition to movement challenges, people with CP can have many other health concerns including: impaired vision or hearing, unable to talk and epilepsy – just to name a few.

     I have said it many times before and I will probably always say it - I NEVER want to hear "Cerebral Palsy" come out of a doctor's mouth when referring to Conner. I knew it was a likely possibility and that eventually I would have to face it. Even with all of my mental preparation, my eyes filled with tears as those two words were spoken by Conner's movement disorder specialist. I imagine that telling a parent their child has CP never gets easy and I will always appreciate the way he kindly delivered the news.  He even asked our permission to give Conner the official CP diagnosis. 

     Cerebral Palsy is a touchy subject for many. Yes, Conner has CP, but receiving the diagnosis didn't change him – he is still the same sweet little boy he’s always been. Being diagnosed with CP is actually helpful for Conner and many other kiddos like him as it can open up a world of new opportunities. Once diagnosed, it can provide more therapy and treatment options that the child will greatly benefit from. If I am being honest, having that diagnosis will lessen the fights one may have with insurance and it may provide additional opportunities for government assistance (i.e. secondary insurance, reimbursement funds, etc.) We are SO very fortunate in that we have very few struggles with insurance (as of now), and that is hard to believe considering Conner's medical bills are well into the $2 million range...and he is only two years old! 

     I often find myself wishing I knew some things sooner. It might not always change decisions I've made for Conner, but I think it would have helped me cope with everything going on. The biggest thing I think of with CP is simple - a CP diagnosis does not suddenly turn your child into someone different. It doesn't suddenly limit their abilities to move and it certainly doesn't limit what they are able to achieve as a person. A CP diagnosis should be seen as a tool – a tool that will help your child gain access to services that they otherwise might miss out on without the diagnosis. It can help them to reach their maximum potential and it may get them there sooner. 

     Don’t be afraid of a CP diagnosis. It is a scary term and it insinuates even scarier circumstances. At the end of the day, it is to your child’s advantage.

Remembering Caden

     Talking about Caden and his death is beyond challenging for me. If you have experienced losing a child then you understand that the pain is deeper than anything you've ever felt - there is actual physical pain that takes your breath away. It can hit you seemingly out of nowhere and it can literally be paralyzing. It is the hardest thing in the world.

     When I am missing Caden and all of the "what should have beens," I remind myself that without Caden, we wouldn't have Conner. Caden was baby A and he was ready to make his appearance much too soon. However, Caden did his best to stay put long enough to save his brother's life. 

     We've been so distracted by everything going on with Conner that we have not fully dealt with Caden's passing. His remains sit in a tiny box in our kitchen/living room. He has been there since the day we brought him home. Conner's tiny knitted hat that he wore when he was two pounds sits gently on top. We spend the most time in the kitchen/living room, so I feel like he is part of the family and not left alone often if he's there. I am also too terrified to move him...terrified of the feelings I don't want to feel, terrified it may appear we've "forgotten" about him. I know someday, when we are ready, we will "properly" memorialize him.  

     For Caden's birthday, Conner does the honors of releasing balloons to him. I imagine he uses the balloons to help celebrate his birthday. We will continue this tradition each year and use that time to talk to Conner about his brave older brother. 

Caden doesn't leave my mind or heart. Happy Birthday, I miss you, sweet boy.