Sunday, April 24, 2016

Possible Diagnosis and Updates

Kreed has been in the hospital, for the most part since February. He first presented with an inability to walk. Followed by a seizure. Followed by more raging and screaming, no sleeping and a slew of other issues. Kreed's breathing began to be affected and doctor's couldn't figure out why. We finally got a resident to think outside the box and he slowly but surely put together the specialists and got them to talk to each other. Ultimately it was decided Kreed's issues were caused from pain, which we agreed with. He was in immense, unrelenting pain. Kreed has been screaming for months in pain. It's been heart breaking to witness and be a part of. His body is constantly hurting, with activity making it worse and he's going hypoxic as a result.
Neurology came to do a larger work up and determined he most likely has Small Fiber Neuropathy along with his larger neuropathy. The small fiber neuropathy is far more painful and affects so much of the autonomic system. What they don't know is WHY he has small fiber neuropathy. It can be congenital or acquired. If it's acquired and they can find why, he will go back on IVIG. If it's congenital then it means it will continue to progress and he will continue to lose function and we are left with only controlling his symptoms and pain.

At this point in time, pain management is the focus of treatment while they work on finding the cause and can do more targeted treatment. Kreed's pain management is compounded by the vast allergies he has and adverse reactions to many. We have trialed activist for two days and both days he raged in pain. Last night in particular, we let him go around on a scooter and take a walk downstairs. Within 30 minutes of our adventure, he was in horrific pain for the next hour and a half until he got a rescue medication. He finally fell asleep in the early hours of the morning exhausted from pain and activity.
I can write all of the above and not shed a tear. But the reality is our life will never be the same. Kreed's life will never be the same. He could end up in a wheelchair for the majority of the time due to his extreme pain when walking, if they can't control it. They could find the cause and then we will have multiple IV treatments a month and hope it stops the progression. Most agree however, that Kreed's days of carefree hopping are over. We have to be vigilant over his activity levels and always be prepared for pain breakthroughs. Kreed is now a patient of chronic pain. Most normal adults have difficulty with ongoing pain and this has happened to our 18 year old active boy who doesn't understand that activity causes him massive pain. I'm trying to figure out how I can possibly explain this to him. Once he isn't in as much pain, I'm hoping we can resume home schooling and our first subject will be about the body.

Most of all, I told the doctors, we have to save his hands. He cannot lose feelings in his hands because that is how he talks. I will move heaven and earth at that point to make sure he doesn't lose his ability to use his hands to talk. Our life has become a nightmare of hospitals, doctors and pain. Our sweet boy suffers so much and it's not fair. I envisioned an active life with Kreed with many hours of hiking in Colorado and so many other activities.
I will post more later. For now, Kreed has small fiber neruopathy and they are trying to find the cause and decide on a treatment. In the meantime, at this time, Kreed cannot be active without causing himself unrelenting pain. It is unknown how long we will be in the hospital, but I would imagine another week at the minimum.

Monday, April 18, 2016

One Day

Everybody always wants updates on Kreed. I've avoided it for days. We have been in the hospital for 19 days, 40 days overall since February. Kreed is a medical mystery. They don't know why systems are failing on him. He now has decreased urine output and wicked different colors of pee but his kidneys are normal. He still has periods of low oxygen. When he stands or walks he's still in extreme pain. Nothing has changed. Tests have been done. Nothing is found. There is no treatment. 
We have a care conference on Thursday to try and figure all this out. 

Meanwhile our hearts break. Our sweet boy who loved to hike is replaced with a boy in pain who doesn't want to get out of bed. He has deteriorated so much. I cry at night when no one is around because I can't even believe this is our life. Every day I sit and wait and help hold him during rages or advocate for his care. At night I research everything I can possibly think of and more. 

I'm exhausted. My muscles ache. I'm sad. I'm angry. I'm everything. Kreed is in pain. He's sad. He cries. He rages. It's never ending for him. 
I miss the sunshine. I miss him playing sports, coloring, swinging, hiking and loving his life. I never wanted this life for him. I wanted a life full of love and light and happiness and joy. Not pain and suffering. We have worked so hard on so many things to make sure he will have a good life. But now this year I have only been able to watch him be in pain and suffer. 
Idon't know how a normal life will ever come. I don't know what will make him better. I don't know what will come of our life. 

I am so broken for him. I am so sad for him. I am so angry for him. But I will never stop fighting for him. One day he will feel the sunshine again. One day he will want to hike for hours again. One day he will not be in pain. One day he will smile and have fun all day. One day

Saturday, April 2, 2016

When We Need Autism Awareness

It's World Autism Day but you probably won't see me wearing blue today. I'm wearing whatever shirt I could grab in my sleep deprived state that I won't mind will be covered in food, pee or blood or all three. I probably won't have a light bulb that's blue because we haven't had time to shop these days or to take the time to screw in some light bulbs to let our neighbors we support autism awareness. I think they are pretty aware when they hear our son's screams or rages in the driveway 

April 2nd is not when I need autism awareness or to spread it. I need it when my child is in pain and decides that destroying his body is a better idea and he bashes his head into the floor. 
I need it when my son has a new health mystery because he can't tell us what's wrong and he screams and hurts himself in pain. 
I need it when he is up all night, throwing his Bipap off, having behaviors or just not wanting to sleep. 

I need it when we are alone fighting for service for months on end. While he's medically unwell and hurting himself and we have no help, no respite and no break of any kind. 

This year we are in a hospital fighting for help for him. He is battling hypoxia and a host of issues and has to have two staff with him at all times and restraints on his bed. Are you aware that this is a reality of many of our children? They can't tell us what's wrong so everything has to be tested and thought about. Their behaviors can increase as a result of pain and sickness to levels you've never seen. I need autism awareness at these times too and hope for doctors who will understand and see more than just behavior. 

We need autism awareness in those dark nights where our tears fall and we wonder how we will ever make it through another day and with no help. We need autism awareness when we have to put a UFC helmet on our kid to stop him from banging his head to the point of brain damage. We need autism awareness when we have to get gloves and other protective equipment to protect him from severely injuring himself. 
Where is the awareness then? Are people aware of this kind of autism. Kreed is a blessing as himself, but his autism part is not. Kreed and autism are not one in the same. It keeps him from communicating and living even a semi normal life and instead he rips his body apart. Do you know what it's like to watch your child literally rip his toe nails off with his teeth? Are you that kind of autism aware?
We accept our son for who he is and fight like hell to get him the right kind of help so he can relax and enjoy his life instead of being racked with pain, hurting and not in control of himself. We work like hell to have him live his life in his own way and do the things he wants. We advocate for him and give him all the tools necessary to be successful. 

But the world is not aware. As families continue to have to fight for necessary services and often do this alone or have to fight he medical establishments for correct treatment or even schools to provide something as basic as a communication device so they may have a voice. When I don't hear about these stories anymore, I will know the world is more aware. But one day isn't going to do it. Not even close. This is why we document and share Kreed's story. It's real. It's uncensored. It's our truth our life. 

And states need to wake up and add autism to the list of conditions for medical cannabis. We wouldn't even know what to do if we hadn't been able to try Kreed on cannabis. It relaxes his ravaged body. It stops his head banging. It stops his biting and hitting and hurting. It helps his medical conditions at the same time. So when 48 states deny families the opportunity to see what their child can do just by using a simple plant, we are not autism aware. 
So no, we don't light it up blue or wear other autism colors. Because we still sit in dark moments and working like hell to save our son and give him a better life. We work every day to make this happen and we spread awareness every single day of our life and turn the camera on to show every meltdown, every failure, and every triumph and amazing moment. That's how this world will become more aware. When the world can see autism and not just hear about it. When the world can see what our kids are capable of when given the right supports and quit fighting us on giving the right supports, that's when this world will be autism aware. But seeing blue and knowing we have a family with autism in it is not even close to enough or scratches the surface. People see the blue, nod and move on. They don't "see" the effect it has on our son or our lives and therefore doesn't make lighting it up blue or whatever color effective. 

People need to start getting involved. Help a a family out. Remove roadblocks to care. Include our son in regular activities. Be aware that autism is a spectrum and affects kids differently. Be aware that all the kids have various ways they communicate. Send a mom an iTunes gift card and give their family the gift of a communication app if they don't have one and give a child a voice. Volunteer at your local day programs and hang out with these awesome adults. Lobby your local businesses to hire more staff with autism so they have a chance at more independence. Be involved. That's the only way this world will become more autism aware. Lighting it up blue does not help awareness, advocacy or acceptance. DOING something does.

These are our thoughts today. Our truth. Our life. We share it in the open, uncensored every single day so that people can see the realities of nonverbal autism with severe medical problems and then you can truly become aware and understand what would actually help and not just wondering what light it up blue does. 

Thursday, March 31, 2016

Fundraiser

Kreed has been hospitalized almost exclusively since early February. As a result he has needed both parents at home because it takes two people to help deal with Kreed and takes two people to manage the home and be at the hospital for him. Kreed has now suffered through devastating pain with peripheral neuropathy, tonic-clonic seizures with his heart stopping, discovering his rare metabolic disorder that has gone un-treated for 18 years and now a recurrent lung disease. At this point, we don't know how long he will be in the hospital and then don't know how long I will have to be out of work for. So many from Kreed's World have offered to help, so I have set up a paypal account to receive donations. We are appreciative of anyone who can or would like to help.

To make a donation, please use PAYPAL and send to erinmpolk@gmail.com


video


Wednesday, March 9, 2016

Giving up was never an option

The life of Kreed is a difficult one. His youth was filled with chaos and destruction as his skills declined and the world no longer made sense. As he got older and had some form of communication with an AAC device, he then struggled with medical emergency after medical emergency and Kreed became a medically fragile and medically complex child no one could figure out. Perhaps one of the most difficult things for Kreed and being incredibly medically complex is the fact that he has paradoxical reactions to most medications.  For each of his medical conditions, Kreed is unable to take any traditionally prescribed Meds or none of them at all. This made his medical conditions that much worse. Throw in a teenager in the throes of puberty who doesn't understand pain and his self injury raged out of control.  

Once Kreed moved to Colorado, he was met with unparalleled medical care. Doctors finally willing to see his medical issues and not his behavior. They also explored even further his reactions to medication. Kreed is left with very few medications to help him. Doctors spoke to us over and over about alternative medications that could help a majority of his symptoms. We were hesitant and had only moved to Colorado to help Kreed's legs as high elevation kept him mobile. 
After another set of reactions yet again due to his paradoxical reactions and plunging blood sugars that would eventually require a feeding tube, we took their advice. Kreed began medical marijuana in the hopes of somehow saving him from his pain and plunging blood sugars, epilepsy (including now tonic-clonic seizures) and self injurious behaviors. The doctors were confident he wouldn't have a reaction to that and there were many different medical and behavioral reasons for him to try it. 
Within a week, we saw Kreed's blood sugars stabilize. Where once there were plunging, unrelenting lows, there was now stability. Where once talking about a feeding tube was a daily discussion, there is no discussion. 

Kreed also has severe self injury. No medication on earth stopped him in his tracks from tearing his body apart. Now there is. Every other medication on earth made his self injury worse. Now he knows periods of calmness and happiness. He still had attacks now and then, but they are far less and far shorter and less intensity than ever before. 
Cannabis has saved Kreed's life. From the medical to mood effects. We knew next to nothing about cannabis and what it can do for Kreed prior to the doctors pushing us toward it. The more we researched, the more we understood. And the more we realized this medication would save Kreed and countless others. Kreed is highly sensitive to any synthetic drug or chemical. 99.9% of the time he can't tolerate. So how thrilling is it that a simple plant has held so much medicine for Kreed and changed his life. 
We hadn't talked about it on here for some time. There is always fear of backlash. Always fear of comments. But no one lives our life and understands what Kreed goes through. And the fact that he can make it through days without injury, weeks without low blood sugars and his terrible neuropathy pain somewhat controlled, and seizures controlled we would be negligent parents to not try it and then keep him on it once we see it works. Comments don't bother us when we have no shame. We leave no stone unturned for Kreed. And I know his story could help many more by telling this part of his story. So many other children and teens and adults with autism that could be better helped with a simple plant. Where calmness can replace chaos and happiness replace self injury. To not see Kreed try to tear himself limb by limb is in itself amazing to us and autism should be a qualifying condition for so many. While Kreed started cannabis for medical reasons, it's also helped his mood and affect as well and be able to handle so much of the medical issues causing him pain and discomfort. 
Kreed's life took yet another step in a journey to health with cannabis. It has been the one medication to single handily save him from so much. So much so, anytime we are admitted, the doctors always make sure we have it and administer it while inpatient. 

So thank you to the open minded doctors that saw what we didn't, and helped our son find his way out of low blood sugars, constant un-ending pain and self abuse. We have so much to be thankful for in Colorado, and this is certainly one of them. 

 *Disclaimer: I am not here to say what will or won't work for your child. I am not here to push any specific medication. Every child is different and only you know what is best. What I am here to say is do not give up, be open minded, research yourself, and realize that most doctors are more than willing to prescribe it and try it. 

Medical Facts about Cannabis
* There are no recorded deaths as a result of cannabis over-consumption.
* The lethal dose of marijuana has never been quantified because it is so high and humanly impossible to achieve.
* There are no serious lasting side effects.  There are certainly risks and side-effects to consuming marijuana but they are more mild than those of most prescription drugs.
Cannabis does not have to be smoked.   Intake methods include vaporization, eaten in food, taken under the tongue or swallowed as a tincture, oil or even juiced.
* Kreed uses oil 
* Cannabis supports the body as an anti-inflammatory, neuroprotective and a vasodialator.
* There are three main compounds- CBD, and indica and sativa strains of THC. 
* CBD is well known for its medicinal effects on seizures, inflammation and other medical disorders. 
* Cannabis indica is known and used for its sedative and relaxing properties effective in treating medical issues like anxiety, chronic pain, insomnia, muscle spasms and tremors. Indica often causes drowsiness, which is why many prefer to take it at night.
* Cannabis sativa strains are more stimulating and are often preferred for day use as they deliver a more psychoactive energetic-mind-high. This effect is caused by the higher THC levels in sativas than indicas. Often helps with ADHD, migraines and other brain based disorders. 
* We support the use of the whole plant and not just CBD use. 

Sunday, March 6, 2016

The Cost

Nobody ever talks about the cost of things. There is a reason why they say special needs parents often have PTSD but no one wants to talk about it. This last visit with Kreed in the hospital was tough. Every time I close my eyes or things are silent, I just hear him scream over and over again. Or when I look outside at the backyard I see where he had his seizure and stopped breathing. 
A lot of special needs parents operate on 3-4 hours of sleep or less. Does anyone wonder what that does to our brains, body and life? Yet you'll see that same parent smile and say she's fine. But we aren't. 

Or when alarms beep at us at 2am telling us our child is having a seizure, or low blood sugar or oxygen desaturations. We live in a constant state of fear for our children. But no one talks about that. If we miss a falling blood sugar, Kreed could die in his sleep. That's also the reality for so many parents with kids with type one diabetes. Kreed has hyperinsulinism so we deal with constant lows. So no, we don't sleep or rest even when it looks like we can. 

Then comes the daytime after a night of little sleep. Either because medically we can't or our kids start bouncing off the walls at 3am and don't sleep so then we have to protect them from getting into things all over the house or trying to escape the house. 

We love Kreed and do everything we possibly can to ensure he has the best life possible. He didn't ask for this life and to be born into the broken body he has. We will never stop fighting for him, loving him, caring for him and making sure he lives one hell of a life. But at the same time, no one talks about what happens in the times we are alone crying and wondering how we can possibly make it another day or fight another doctor or stay up all night another night checking blood sugars. 
And right now, every time I close my eyes I hear his pain scream as he gets his infusions to end his status migraines. Or the way it felt to hold his lifeless body in my arms. These are the moments we don't always talk about because it is so hard. We are conditioned to tell everyone we are fine and okay and we can keep going. Because what choice do we have? We work every day to keep our children healthy and happy no matter what comes our way. People always talk about taking care of yourselves to take care of others, but the majority of time that's not even possible. Some people don't have extra help at home, either due to lack of services or wait times for services. So we just do the best we can do and make sure everyone knows we are okay and will keep helping our children. 

We don't get to go out and have dinner or see movies. We don't get weekends away together while Kreed is taken care of. Our life is Kreed. Maybe one day when he's more stable we will get those moments. But does anyone wonder what that does to you as well? No sleep. No time. No togetherness except bonded in the stress of a child. 

No one talks about the cost of being a special needs parent. It doesn't mean we love our child any less. It doesn't mean we won't fight like hell for him. It doesn't mean we will let his medical conditions overtake him. But just as there is a cost to him having such a broken body that can't do the things he needs to do, there is a cost to us as his parents and our mental stability. The sleepless nights, the aching muscles from holding him down during another pain rage, the lack of togetherness, and the extreme duress our bodies and minds are put through...that is our cost and some days it is more than we can bear. But you will never know that. You'll see me smile. You'll see me interact with Kreed with no trace of tears. You'll see me lift him up and keep getting him to shine. You'll see me wipe away his tears, the blood and help fix him up. You'll see me work to keep him active and busy and happy. You'll see me help him when it's hard. You'll see me trying to think of new ways to help him. You won't see the tracks of my tears, you won't see the blood I cleaned off myself, you won't see the copious amounts of Advil I took for my aching muscles, you won't see my tired, hurt eyes (but you may see my black one ha)
Because I am fine and he needs us right now more than anything we need. He is in pain and hurting. So we love, we love, we love and we pick up the pieces so that our boy may one day smile again. And we keep going like a force no one has ever seen to keep him well, make sure his doctors listen and to find our way back to his dimples. 

But don't ever deceive yourselves when you see a special needs parent smiling. They bear costs that you will never know about and may never understand. 


Sunday, February 14, 2016

Zebra Diagnosis

There's a medical saying "when you hear hoof beats, think horses, not zebras." However, in Kreed's case, he has always been a zebra and in the past week, we know how rare of a zebra he is. So rare his doctor said you won't find another person in the state of Colorado with it. There are few people over all in the world with it. 

For those that don't know, Kreed's development was fairly normal until he was 3. Kreed spoke. Had great motor control. Was a smiling, happy, rambunctious three year old. Then over the course of a year, Kreed lost everything. Motor control. All speech and language. Everything. Gone. 

Fast forward years later and things continue to go wrong in his body. Non-stop. Every single year he is hit with something new. He has had specialists follow him his whole life, most scratching their heads. He never fit a box. Never fits any box. Looks like autism, but not quite. Looks like so many things but not really. And his continual decline in health led many to believe it was mitochondrial or generic. But still no one could find it. No one could quite put their finger on it. Tests have always been run. MRI's, exnome sequencing, CAT scans, blood work, lumbar punctures. The list is endless. While everyone can find the diagnosis of the year, no one could find the thing that ties it all together. 

Then we moved to Colorado. Kreed has continued his decline, which also seems to have accelerated. More wrong in less time. More doctors and tests. Then one day, he loses the ability to walk completely. We are devastated and have no idea what has become of our life, his life. So we take him the Children's Hospital of Colorado. 

They are just as confused. They are just as lost to Kreed's sudden decline, but they want to find it. A world renowned metabolics Doctor comes to his room and starts to go through his records which we brought with us. And with the odds against it, he finds a pattern. The pattern leads to some tests. The tests lead to a possible diagnosis. After all these years and all these tests, one doctor, in one state, saw something no one else ever has. 

So here we are, waiting on some final tests to determine exactly what Kreed has. But it's the reason for his developmental delay, his neuropathy, seizures and a few other issues. Something he was born with that no one knew. And it was wreaked havoc in his body, not letting him live a normal life. And now we wait, to see if there is treatment and if there is, what that treatment can do for him, if anything. 

All these years we just wanted to know. We wanted to know what was taking our sweet boy from us, what was taking his mobility and motor skills. What took his speech forever. So we are sitting at Day 10 in the hospital, waiting to hear the next plan and the new diagnosis. Waiting to hear what life has in store for us next and what will happen to Kreed for the future. 

This picture depicts the area in Kreed's body with the dysfunction. We are waiting for the final diagnosis, could be one of five or six things or a new presentation of it. 
And this is the boy we hope to get back with treatment. 
And this is the state that held the one doctor (out of two) in the United States who even has a clue about this dysfunction in the body. Talk about luck in moving.