Last night was my first town hall meeting and the very first time that I spoke publicly about my son's health care issues and needs. It was hard for me to do and very emotional. I was so nervous when I was handed that microphone that my heart was beating in my chest. I honestly can't even remember exactly what it is that I even said but it went something like this:
"Hi. My name is Erin Miller. My son has been a patient of Unity Point since he was a tiny baby. Your Neurology Department found the mass in his brain at 10 months old. They guided us through his first Ambulance Ride and following Hospital Stay and they were the ones who gave us our son's Epilepsy Diagnosis last October. Your Neurologist also was the person who encouraged us to try CBD and then was unable to sign our card for us. So, I'm curious as to why your Hospital has a policy against CBD when your Physicians feel otherwise". As I said this, I could see the woman sitting next to me furiously shaking her head "no" and instead of allowing the Nurse Practitioner (who was the one speaking at this event) to answer, the woman seated next to me was handed the microphone. She introduced herself as Chaney Yeast, and promptly informed me that what I was saying was incorrect and that they do not have a "policy" against CBD. I don't recall what else she said because I was absolutely floored at what I was hearing. As soon as I heard her say her name I knew exactly who she was. Unity Point's lobbyist who fought AGAINST the CBD Bill in 2014 was sitting right next to me. She also happens to be the Manager of the Regional Child Protection Center at Blank Children's Hospital. When I first started getting involved in legislature, I read about Chaney Yeast in the news because she was the woman who stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.” I found it interesting that a woman in the crowd was trying to tell me what I have lived and experienced for the whole of 2015 was untrue. I let her know (with microphone in hand) that their own COO had spoken with me on the matter and that I have a letter from him admitting that they won't back it until the FDA approves the use of such oils. We each only had 3 minutes so that conversation went quickly but I scooted next to her on the bleacher and showed the before and after photos of my son and told her of all the improvements that he has made courtesy of the CBD. I explained to her that her Hospital was unable to help us on more than one occasion and that it was difficult to understand how a Physician can tell us behind closed doors to try a medicine and then not give us legal access by signing our Application for a Registration Card. I reminded her that I'd written to their CEO and their VP only to be ignored. But she held fast to saying that none of their Neurologists feel comfortable with CBD or signing for anyone. I was hoping that hearing what we'd gone through with the ups and downs of diagnoses and medical emergencies and their own physicians throwing their hands up in the air and admitting defeat in not knowing how to help - and admitting to us that they didn't know what to do would make her realize how poorly their hospital policy is affecting people. But... she held on to her point that Unity Point does not have a "policy" against CBD - that they are just waiting for FDA Approval. However, they as a Hospital actively lobbied against the CBD Bill in 2014 and will clearly continue to do so which breaks my heart for all of the other children who suffer, who need help and who are being ravaged by pharmaceutical drugs. So, I decided to look up the definition of "policy" to see for myself if I was missing something. What the difference is between not acting on helping a patient (while waiting for approval from the FDA) and the literal definition of "policy" was. Here is what I found: policy noun, pol·i·cy often attributive \ˈpä-lə-sē\ Definition of POLICY1. a : prudence or wisdom in the management of affairs b : management or procedure based primarily on material interest 2. a : a definite course or method of action selected from among alternatives and in light of given conditions to guide and determine present and future decisions b : a high-level overall plan embracing the general goals and acceptable procedures especially of a governmental body Perhaps I am just reading the Dictionary wrong but it seems to me that their actions definitely prove that what they are doing is indeed a "policy" but that is clearly my own opinion. As a mother whose child has been directly impacted by this (non) policy - this is just hard to swallow. I just don't understand why they aren't helping. She tried telling me that we are on the same team and fighting for the same things but I disagree. I don't think that it is okay for a Physician to tell a scared set of parents with a sick little boy that a) they don't know how to help and b) tell them that they should give CBD a try and then not actually be able to help. She told me that she knows that none of them are comfortable signing for the cards. In my opinion, it is wrong for them not to sign when they themselves felt that it would benefit our child. A hospital's non-policy or hesitence to not help and even hinder the cause says everything that it can possibly say without even uttering a word. Clearly, I am thankful that our Physician told us to try CBD a handful of times before we finally decided to pursue that option. If he hadn't done so - my son would NOT be seizure free today. My son wouldn't have those awful side effects from CBD like cognitive gains, sleeping, eating, playing with other children, actually being able to play with toys and improving on his fine and gross motor skills like a champ. That physician saved my son's life. And even though I am angry at him for not standing up for what is right or what he felt was best for our child... I am thankful for him telling us about it. I understand that he is an employee and has to follow the guidelines set upon him by his employer like anybody else. It just happened to affect my family personally and I took it personal as most rational people would. Last night was an emotional night for me and of course I barely slept a wink because all I could think about was "what if". But I can't think that way anymore. I'm changing all those "what ifs" to What Now. I am doing all that I can for my son. I am a good mother. I am a fighter. I am an Advocate and now that makes me an Activist, too. Standing up for what you believe in is hard. I sat in those bleachers with tears pouring out of my eyes as I spoke to that woman but I said what I wanted to say. We definitely aren't fighting the same fight but in the end, she gave me her card and I shook her hand. I just hope that she listened and actually heard. TODAY marks 115 days SEIZURE FREE courtesy of CBD. I haven't had the courage to post here very often because when I try to tell this story over (and over) again I just get angry. After Abe had his ride to the Children's Hospital in October in an ambulance I thought that maybe we'd have answers. We went through a 44 hour VEEG and then a 22 hour Ambulatory EEG and had no events or episodes that we noted. I went all that time and all of those weeks thinking that they had just disproved seizures. WEEKS went by and we heard no news. None. At my follow-up appointment, I was told that his EEG was "abnormal" but I needed to re-schedule the next appointment with my husband so he could go over the EEGs with us. So we did. It was then that he told us that he has "Generalized Seizure Disorder" and that his EEG was "very very abnormal". He described it as "his brain is firing from all over the place all of the time". Then he gave us a list of medications in which we should look into and chose which anti-seizure med we needed to choose. Luckily, I have a great relationship with our Pharmacist who helped us pick based on his extensive knowledge of all that is Abe.
We chose Clonazepam over the rest in hopes that it would help is serious lack of sleep, his agitated mood in addition to helping his seizures. December was THE BEST MONTH we have ever had. All of our friends noticed just from his pictures that he was so happy and he felt sooooo good. He had a shine in his eyes. He smiled. He played with toys. He walked unassisted for the first time in his life at 30 months. He fed himself with a fork for the first time all right before Christmas. Everyone said "he seems like such a different little boy". But then it changed. So we upped his Meds in January, February and March. For most of the month of March I called begging for help to our Neurologist's Office. We were trying to set up peer-to-peer conversation between our local doctor and the Skull Base Surgeon who had been following Abe since he was 10 months old. Our Neurologist had admitted that he needed outside help. I even wrote a research paper for him on the 7q31.31 deletion and our Geneticists findings as well as the info I had from the only 4 other families in the country who have similar but not the same deletion but I never got a response regarding my findings at all which basically proved that the 7q31.31 had no other patients who suffered from seizures. After our Neuro and the Skull Based Surgeon's first peer-to-peer, we were told their concerns were things were structurally changing within the brain. We needed an "urgent MRI" that got pushed back a week. I bawled my eyes out. Then we got the MRI and it showed that in addition to his "11+mm prominent pineal cystic lesion" he now has a new 2cm occipital cyst as well and there are changes in his hippocampus and his temporal horns. It took another 10 days for these results to be discussed with the Skull Base Surgeon (who wanted to give us an even later date but our doctor refused). Just last weekend, he had a seizure with his SCL on that Friday, by Saturday he was crawling and by Sunday he could only take a couple of steps before he collapsed and had to crawl the rest of the way. I called the "on-call" Neuro who asked me "What do you want to do?" In some occasions, it's great to have a doctor ask you that. However, that occasion is NOT when your toddler is having Neurological Issues and no one ever even really discussed with you what that REALLY MEANS or what to look for... that is not what you want to hear. So, she advised us to give him an extra dose of meds and bring him in if it still continued. And it did. So we went to the ER. We were admitted and told he'd need another MRI and no one would even call to discuss with our Neurologist. So they prepped him for said MRI and full sedation (with breathing tube, etc) by giving him an IV (which is horrific for him, in so so many ways) and starving him. By 7pm that night he was a WRECK. They still didn't have a sedation team to do the MRI so they let him eat and then we had to withhold food again until his MRI that was to be at 8 am. Eight o'clock in the morning came by quickly and after waiting several hours more and with Abe having a nervous breakdown, the MRI was canceled and my son was able to eat. By 2pm that day, our Neurologist told us the Skull Base Surgeon still said he was not a surgical candidate for the pineal cyst and had no other advice. No word about the Seizures or the changes in his hippocampus or temporal horns. No mention of the new occipital cyst. No explanation. No nothing. We were told that they didn't know how to help us and that we needed to go somewhere else. Having your Neurologist tell you they don't know how to help your child is overwhelming. I'm NOT angry with him for that at all. I feel lucky that I at least have a doctor who is honest with me and WANTS to help my son get to someone who can help. It's an incredibly scary journey when the specialists need to point you in another direction. To sum it up: I am pissed. I am so frustrated with the medical care my son has gotten since Day One. I am so tired of people being completely oblivious to the fact that even though we (as a Country) feel we live in such a great place with medical help - the fact of the matter is - it depends wholly on what insurance you have and how much money you'e got. If you or your child has a major health care issue and cannot afford private insurance on top of the Medicaid your child qualifies you are screwed. It's even worse if it's rare. It seems to me that the doctors we have dealt with personally, would much rather tell you "I don't know" than actually do some research to try to educate themselves so that maybe they could offer some words of advice. Instead, they just point their finger at the next Specialist and send us on our way. To help you understand my frustration, here is my breakdown in dealing with Neurology, Neurosurgery an Genetics: Almost 18 months ago, I was told that my son had a Pineal Cyst. I was told that they are "notoriously slow growers" and that it most likely wouldn't grow at all. However, we were sent to another hospital for a follow-up MRI with a Pediatric Neurosurgeon. When we checked in and were about to put my son under anesthesia they had to ask me what we were even there for! Yes, that's right. They didn't even know WHY we were there. I had a lengthy discussion with the Nurses, the Anesthesiologist and everyone else involved in my son's care that day as to what we were looking for and much to my shock and horror the Radiologist came back and reported my son's brain scan as "normal" and "no mass lesion" when any fool with eyes can see that THERE IS SOMETHING IN MY SON'S BRAIN. (With this, I must stress the importance of YOU as a parent taking a major role in your child's health care. Get copies of everything. Get records as soon as you can. Get the Discs of all the scans and LOOK at them. READ the reports. You might be shocked at what these "specialists" are missing.) So, I call my Neurologist who in turn is livid and makes the radiologist correct his report. Yet, you know what is scary? Typically Neurologists go by what the Radiologist says! What if that had been his first MRI? What if I HADN'T checked the scans and read the reports myself? Thankfully, we have a Neurologist who cares and advocates for his patients. The truth is, we wouldn't be where we are or as far as we are. YOU have to advocate for your child. No one else is going to do it for you. No news is not good news. No news in actuality probably means someone is not doing their damn job and I have learned that time and time again. Anyhow, after that debaucle we met with the local Pediatric Neurosurgeon who told me that it is likely benign, can't cause symptoms, etc. Come back in one year for a follow-up MRI, which is where this part of our story actually begins. Due to the fact that the Radiologist incorrectly reported my son's brain scan as "no mass lesion" when we were there for a follow-up BECAUSE HE HAS A MASS LESION, I wanted a second opinion. So, we got a referral to our state's teaching university (a four star hospital) and we got an appointment with what we were told was a world reknowned Neurosurgeon who came highly regarded. We also had an appointment with their Pediatric Neurologist as well to get another Neurologist's Opinion. To get to the teaching hospital it is a 2+ hour drive to get there and when we met with this world reknown and highly regarded Neurosurgeon it was clear he had no interest in helping us and didn't even bother closing the door to the consultation. He took one look at my heavily tattooed arms, asked if I'd done drugs while I was pregnant, informed me my son had fluid all around his brain, that whatever was wrong with him happened in utero and that we needed to go to Genetics. He scoffed at my questions and quickly dismissed us. Two hours later we met with the same teaching hospital's pediatric Neurologist who was in such a hurry to get away from us he seemed more like The Rabbit from Alice in Wonderland than a doctor. He couldn't stop looking at his watch, watched Abe roll around on the floor for less than 5 minutes, didn't even DO a physical exam and said "He looks fine to me. Come back in a year if he's still not walking." and he rushed off with his briefcase in his hand. I was livid. I filed complaints. Nothing came of it. I was hurt, disgusted and feeling betrayed by the medical system. How dare they not care about my suffering infant?! After that, I researched day and night and read as many medical reports that I could find to educate myself as much as I could about Pineal Cysts. I joined a private support group for people who suffer from these lesions and for parents of children who suffer from these lesions. Thankfully, I stumbled upon the Skull Base Institute in Los Angeles and Doctor Shahinian. Luckily, my father and step-mother helped us out with the hefty consult fee it took to get a true professional opinion on the lesion in my son's brain. He informed us that my son's cyst was significant, that it was causing vision disturbances and that it would need to be dealt with. Last year was just not the right time. I had a hard time with understanding why his symptoms would need to worsen before this lesion was removed but the difficult truth of it all is - the surgery my son requires is literally the most dangerous sort of brain surgery there is. Pineal Cysts sit in the deepest part of the brain and most Neurosurgeons won't even touch this part of the brain until worsening (ahem, life threatening) symptoms arise. Doctor Shahinian is a Skull Base Surgeon and has actually invented surgical instruments with NASA to make endoscopic brain surgery more do-able and he is the one I will trust to remove this lesion when he says it is time. Luckily, we get to speak with him again on Friday. I am terrified of what he is going to tell us either way. Waiting is the worst but so is the thought of brain surgery. Hoping for brain surgery is even scarier but this little boy deserves to live his life pain-free and surgical intervention is literally his only option. Doctor Shahinian told me to wait a year so I did. I tried to put it in the back of my mind and not obsess over it. I concentrated on helping my son with the things I could help him with and we dove head first into Physical Therapy, Occupational Therapy, Speech Therapy and more. We went to Genetics like the first Neurosurgeon suggested and we found our son has a Rare Chromosomal Deletion but since his father carries the deletion they felt that it was a benign finding. We saw Nephrology and discovered a horseshoe kidney that is for now operating at 100% with one doing 60% of the work and the other doing 40%. We went to Cardiology and thankfully found out his heart is "beautiful". Genetics tested him for several other clinical diagnoses but came up empty handed and told us to come back in two years in hopes that new testing may arise. So they had no genetic proof for the cause of my son's global developmental delay, hypotonia or any of his other health issues and diagnoses with are now pages long. The year went by quickly doing all of those things and Abram was scheduled for a follow-up MRI (back at the hospital where the Radiologist failed to even note his mass lesion) and of course to our dismay our appointment got screwed up courtesy of a careless nurse not reading her reports and filing his MRI with the incorrect insurance which we had not had nor paid for in months. So, we had starved our son for 14+ hours by the time I stormed into their office with my screaming toddler who was beyond consoling at this point. She needed to see that her actions actually has an impact on her patients. A two year old who is non verbal and who has been diagnosed with an Intellectual Disability cannot comprehend why he cannot eat or drink. They would NOT let us get the MRI even though I offered to pay cash. I was disgusted. I filed a complaint and we ended up going back to the Children's Hospital for the follow-up MRI. Our normal health care provider called us the next day with the Radiologist report which stated my son's lesion was "unchanged". I should have known better. When we went to see our Neurologist for a follow-up he didn't even know we'd gotten the MRI even though I had called his office THREE TIMES to let him know it was done and that we were coming in for discussion. He never had a consult with us about this MRI and I am not convinced that those images were ever even looked at. He did send the images on to the same Neurosurgeon's office whose nurse totally screwed us over on Abe's follow-up MRI and some time afterward I got a call from said nurse informing me that there was no need for follow-up. The Pediatric Neurosurgeon had no need to see us. Fast forward 60 days and my son is in an ambulance after what we thought at first was a Night Terror that turned into God knows what. A seizure? Aspirating? No one knows. He spent three days after that on a video EEG that caught NOTHING and then another ambulatory EEG that caught nothing. And let me tell you... putting a child with Sensory Processing Disorder through EEGs is like putting them through torture. My son was so upset that by third day of the Ambulatory EEG that he'd clawed through most of his gauze and shredded it t pieces and managed to pop of eight of the sensors. I just asked for them to end the study at that point. What's the point? It's not accurate if the sensors aren't on. They weren't going to stay on. It was pointless. I was informed then that we were "out of monitoring options" because they were convinced they'd prove that it was seizures causing my son's issues. We have officially had a sleep deprived EEG, two 3-day Video EEGs and an Ambulatory EEG and they have found no evidence or proof of seizures. So I went down to the Hospital in person and got a copy of my son's most recent MRI and was SHOCKED to read that the Radiologist reported that it was unchanged when in fact it had GROWN. I was beyond mad. I called his office. They would not let me speak to him to explain this to me. I called my Neurologist and he told me I'd need to see the local Pediatric Neurosurgeon. I called my health care provider whom I cannot get ahold of on the telephone and it's been two weeks. After explaining to our Neurologist the issues I had with his friend he referred us on to the teaching University to a "new" Pediatric Neurosurgeon up there. This of course took two weeks and four phone calls to get. I'm honestly questioning myself on why I'm even going back there after how their Neurology Department treated us last year but I'm going to try to be open-minded about it. Maybe this guy will not be a total egotistical maniac. If he is... you might hear me screaming. In addition to traveling up to the University we also have an appointment with the Skull Base Institute to speak with Doctor Shahinian.I'm scared shitless of what he is going to say. Waiting is awful. Yet, if he does tell us its time - Abe's Medicaid will not pay for us to go out-of-state for a surgery like this and I do NOT trust the people in this state with something as delicate and life-threatening as brain surgery. The surgery costs in upwards of $300,000 but if it comes down to that I have faith that fundraising will help us get what we need as SBI allows for down payments, monthly payments and the like. I will do anything possible to heal my son of this terrible ailment. So that, my friends is our Journey with Neurology, Neurology, Genetics and the very real fear that is happening to my son. I am beyond thankful for my parents who have given us unconditional support and my friends who always send an encouraging word when I need it the most. To sum it up... this fucking sucks but my son is amazing and resilient and strong. He will overcome this and most likely will not remember any of this craziness. I however, am screaming on the inside and cry a lot when he's not looking. Just so proud that I have people to count on including friends who do research and hand-deliver it to show these jerk Neurosurgeons in Iowa that there is real facts published in Medical Journals proving that what my son has is in fact symptomatic. (Cecil, if you are reading this - you are my hero.) I'm sitting here with tears rolling down my cheeks and I don't really know why. Well, I know why.. I have a hundred different reasons to cry but today it just seems like my seams are coming unstitched a bit. Things have been hard since the moment Abram came into this world. I have been trying my hardest to handle the hurdles in our life with as much grace as possible but I have my moments (days, hours, seconds) of just sheer agony and a lot of weeping and then I feel guilty because so many other moms/families have it harder than we do. Yet then there is this anger.... resentment (?)... jealousy of the life that my little boy will never have. I try my hardest not to cry or feel sorry for my family and for my little boy but today is one of those days where I want to run outside and scream at the sky about how god damned unfair it all is and how angry I am. Since my last post we saw an Orthopaedic Surgeon and Abram just underwent his second "high contrast" MRI yesterday. The Orthopaedic Surgeon informed us that Abram's Hypotonia is the result of nerve damage due to his difficult birth. We were informed that he may never walk and told us that we "could do Physical Therapy until we were blue in the face" and that it wouldn't make a difference. He told me that Abram's hypotonia has more to do with time and the nerves having to re-route themselves. I was heartbroken and left feeling defeated. Abram will never know the difference in what he can and cannot do but as his mama it is painful to see other kids enjoying things while my little boy doesn't really seem to enjoy much. It hurts me to see that he doesn't take enjoyment in the things normal kids enjoy and it's hard to have play-dates when he cries at any high-pitched noise because it literally physically hurts him to hear them. I feel pretty alone and lost on the inside. Most of Abram's days have been hard ones. This poor kid has never gotten a break. He has almost always been in pain and fussing. Only, the part that is the worst is that he can't tell me what hurts. He can't tell me what is bothering him. All he knows to do is to cry and to fuss and all that I know is there is nothing that I can do right now to make him more comfortable. He always seems to be hurting and I don't know how to help him or how to make it better. There is no pill to make my kid feel better. There is no magic potion to help him with his Hypotonia. There is no cure for that god damned thing growing in his brain (other than the very dangerous and invasive brain surgery he will have to endure). I am literally unable to do the one thing all moms are supposed to be able to do and that is to make my little baby boy feel better. So if you are reading this and you have a healthy child... be thankful. Rejoice in the fact that your child can walk, talk, run and play. Remember that when your child has the flu, a bad day or a toothache that those things will pass and most likely for you - tomorrow (or next week) will be a better day. Right now, I guess I just feel lost. RIght now, I want to yell WHY ME?! WHY MY CHILD?! But then I have to remember that somewhere.... someone doesn't have their son or daughter. I have to remember that even though things are hard that this life is a gift and I have to try to enjoy every single moment as much as I can. I have to remember that although Abram's life won't be easy.... that it's his life to live and I cannot and will not succumb to self pity and anger and regret for what could have been for him. These are the unfortunate cards my son has been given and we will overcome it or live with it. There is no other option. I have my son. I have my family. I have my friends. I have an incredible support system and people that care. I have a lot to be thankful for. I also have the right to have a bad day. It's so hard to go through all of this without hitting an emotional bump in the road. For now... we wait for the results of that second MRI and hope for the best. When I met with our Neurologist to take a look at our son's MRI and go over it with him, I had no idea how very scared I would become. I was informed that our son had a 10mm "cystic lesion of the pineal gland" and had no idea what that meant or what it would mean for our family. He pointed out to me where this cyst was and felt very sick to my stomach to see him pointing right to the middle of my son's brain and to a very apparent circular shape in his MRI. While outlining the cyst with his pen on the computer screen he just kept on repeating "See this? It's rough. See here? It's rough. It's rough". Cysts are supposed to be round and my son's cyst has a rough edge that is large enough to be touching his cerebellum and his ocular nerves. He also told us that cysts can and will grow and that we'd need to go to a Neurosurgeon at that point. Luckily, I had my good friend Adria by my side to re-inform me of everything after-the-fact as I was worried that I would forget something important! In addition, I was informed that Abram would have to go through a secondary "high contrast" MRI to find out if it is benign or not. It is now going on three weeks and Medicaid has yet to approve the second MRI and sent us a letter last week stating they will be canceling his insurance through them as of August 1st. So, we now have 16 days to find my son coverage and despite what they say... you can and will be denied coverage for "pre-existing" conditions since we just were told by our private insurance company that they cannot and will not cover him due to these reasons. According to the National Organization for Rare Disorders, "larger pineal cysts are rare findings". Hearing that the thing growing in your son's brain is "rare" is horrible. Even scarier is the fact that we have had a close family member recently overcome and recover from Brain Surgery after being diagnosed with a Stage Four Pineal Gland Tumor. Due to the fact that Abram's "cystic lesion" is already 10mm and is already symptomatic it is inevitable that my son will need brain surgery to remove the lesion from his brain. When I got the news about what was in our little boy's head I spent my nights searching for information and had a hard time coming up with much tangible information about my son's condition. I joined Forums and Support Groups and even Secret Support Groups. I was shocked to see how many adults were complaining of horrible symptoms with cysts smaller than my son's. I felt that THAT explained why we have more "bad" days than good. If my son feels how these adults feel than no wonder he is so crabby and not feeling good most of the time. We have days where its a struggle just to keep him comfortable. However, one name kept getting brought up in all of the forums and support groups and that name was Dr. Hrayr Shahinian of the Skull Base Institute. I looked at their website, read every single word on their website at least a handful of times and talked to former patients and parents of children who are also going through a similar struggle. So, my Dad and step-mom gifted us the hefty consultation fee and we and overnighted Abram's MRI and his 408 page Medical Record to Los Angeles. Within the week we spoke with Dr. Shahinian over the phone to hear his opinion of our son's situation. Dr. Shahinian immediately made me feel at ease with that calming voice of his but he went right into what he had to say to us. He confirmed that the cyst is the cause of our son's vision issues but did not feel that it is what is causing his Hypotonia. He went on to say that it is small compared to the cysts he sees (as he sees thousands of them a year as opposed to the Neuros here who rarely see large pineal cysts). However, he also confirmed that brain surgery would be in our son's future since it is already symptomatic and he went on to say that he advised against us getting the second high-contrast MRI because it's so hard on little kids and instead suggested that we just get another MRI in one year and measure its growth at that time. I never thought I'd be disappointed that my son couldn't have brain surgery right away but that is how I felt. If we know it's already causing issues and effecting his vision why not get it out while he can't remember what happened. Having to hurry up and wait doesn't seem like an option to me but it at least gives us more time to try and raise the funds that we will need to pay for said surgery. Insurance will not cover the procedure and the surgery alone is $100,000 not including the surgical team, nurses, anesthesiologists, hospital stay and travel expenses. I've heard that the final cost is in the upwards of $250,000 from several former patients. Thus the reason to start our fundraising efforts now. I am trying to be reasonable and set a goal of $100,000 by his next birthday since cold cash seems to walk the walk more than any other bargaining tool there is when it comes to one's health care. Meanwhile, I informed Abram's Opthamalogist of our findings with the MRI and he personally called me after he had a full day of surgeries just to discuss our son's case with us. He told us he is very interested in Abram and wants to see him again at our earliest convenience. That it is rare that the cyst would be pushing the exact same pressure on both of his eyes and that he recommended getting the second high-contrast MRI just to be confirm whether it is benign or malignant. Dr. Shahinian is an expert in his field and I trust his opinion and value him as a Brain Surgeon however, the Opthamalogist reminded me that Dr. S has only seen Abram's medical records and his MRI and that he has not seen him in person as he and our Neurologist had and that our Neurologist would not have ordered a second MRI unless he felt that it was medically necessary. So, since two out of three of our Specialists say that the second MRI would be of some good we have decided to go ahead and go through with it. Hopefully Medicaid will see it our way and approve it so we can get Abram the procedure before Medicaid cancels his coverage. So, we are currently just waiting and hoping that Medicaid comes through for us and allows for us to get that MRI before they dump us and potentially leave us without any health coverage. In the meantime, I have applied for Hawk-i and hope that we can get that insurance put into place as soon as possible and that with all hopes we qualify to get it. Abram's dad has insurance through the company he works for but he works for a small business so their rate premiums are through the roof. Purchasing insurance through them would put us right back to living paycheck to paycheck with no savings and a $9,000 deductible before they cover a penny. Add to that the fact that they have already stated they will NOT cover the surgery and I am just feeling angry and overwhelmed! So.... off to do some more waiting! Resources: American Journal Of Neuroradiology US National LIbrary of Medicine - National Institute of Health Skull Base Institute |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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