Things are hard when it comes to what's right and what is wrong. I have tried my best to do what is right when it comes to the extent of the law. I have followed every avenue that was presented. I have asked nicely on more than one occasion for the help that my son needs and for a medicine that can help him. I have been advised to get help from law enforcement and I have been advised against it. I have been told to "do it anyway" from my own lawmakers. I have also been told "I don't know" when asked about the specifics of a law that they themselves have made.
I am beyond frustrated. And in fighting a fight for a medicine that has a stigma so far removed from what is going on in our generation - it is most unfair. If someone had told me when I had my son that I would be fighting for legal access to CBD I would have asked them "CB What?". The truth is - I had no idea I would have to fight so hard just to give my son good care. If you've been reading this blog - you know our struggles. You know how hard I've had to fight for answers for my son. We have been through the ringer with the medical field way before we were even told our son has Epilepsy. We have been told contradicting information and advice since Day 1. I still often linger on the "what-ifs" of the day he was born and if this could have been prevented for the most part. Obviously, I can't prevent a Chromosome Disorder or a fused kidney or a mass in his brain but I often wonder if his Hypotonia, Global Delays and Speech Issues have more to do with his lack of 02 at Birth than anything else. But.. I can do nothing about that. It is what it is. What I can do is fight. I can educate. I can share our story. I can try to hold back tears when I am showing a Senator a video of my son having a fit on Keppra because he can barely handle seeing my son like that. I can try to hold back an Ugly Cry as I share with the President of the Iowa's Senate's Assistant that we STILL can't get help. I can hold back my rage when yet another Physician is more worried about getting sued and "not having a legal leg to stand on". My son deserves a quality of life that doesn't include eyeball lesions, painful rashes, more severe seizures and slower thinking. If a person looks (actually LOOKS) at the things the FDA Approves (and often rescinds) - they make think twice about giving medicines to a child that have the possibility of life-long damaging side effects over a plant. A PLANT. It's not right and it's not fair. But I'm fighting as always. Always for Abe. (Fighting to get a CBD Registration Card has been proven to be quite difficult. So, I have not stopped contacting my State's Representatives. I have officially written each of my State's Senators TWICE and out of 24 Senators - only 3 have responded. Yes, I get that they are out-of-session but they still check their e-mails according to the out-of-office auto responses I have been getting. I have also written to each and every member of the Republican House Members (including my own Rep Ralph Watts) and even had the opportunity to speak to the now newly voted in House Speaker Upmeyer as well.
Tuesday, my District's Senator, Jake Chapman will be coming to our home to meet Abram. I'm excited for him to meet him and see how hard he has to work to do things that his little ones have accomplished with ease. I must admit - before Abram - I had no idea what Epilepsy meant. In my head - I pictured grand mals and only in context with what I'd seen on television. I remember seeing a great old Graphic Design campaign against Epilepsy that used the old stigmas of Epilepsy with silhouttes of children from when I was in college but that was it. I had no idea what it meant for someone to HAVE EPILEPSY. I still don't. I'm still learning. That face down there? That's my view of what Epilepsy is what what is can do to a person. It can make me fear every single night that he might not be here in the morning. It makes me turn on the monitor a million times at night to make sure that he is still breathing. It makes me get second, third and sometimes fourth opinions because so many times we've been disappointed and let down by the people we are supposed to be able to put our trust into. I fight for CBD because I love seeing this smile. I fight for CBD because I long to hear his little voice tell me what his favorite things are or what he's thinking or if he's hurting. Epilepsy is a different battle for each of us. I've met so many other moms with kids whose issues are much more severe but those moms still reach out to share a kind word. Epilepsy steals your child from you little bits at a time. The Pharmaceuticals they want us to give our children can have toxic and long-lasting and often times permanent side effects and even death. Epilepsy steals their words. Epilepsy will rob you of your faith in doctors, in politicians and honestly - even your faith in yourself. It's hard not to be able to take away your child's suffering. It's even harder when there is a medication with a lot less side effects that even has a slight possibility of making things better but yet not enough people in Politics wants to get involved and stand up for these kids that have no voice. I will continue to fight. I am hoping that the Iowa Politicians help make things right in our home state while the Federal Government hopefully steps in and does the right thing to support H.R 1635 and S.1333. This is the face of Epilepsy in my life. He is worth fighting for. Yesterday, I posted my third and final attempt at contacting Unity Point/Blank Children's via their VP and CEO. Although, I never did get an official response from they themselves, the President and COO at Blank Children's Hospital contacted me to address my concerns. I have to be cordial in saying that he was a polite man but he advised me he was going to tell me what I didn't want to hear. I already knew that.... but I wanted to be heard. Not ignored. This is a child we are talking about. The facts are: Unity Point/Blank Children's opposes the CBD Bill here in Iowa and will not consider backing it until the FDA Approves it. I get it. It's big business and big pharma and there is nothing that I can do about it to change anyone's mind. It's just sad that parents and physicians aren't able to make choices for their children and their patients without policies blocking their way. My son has suffered enough. He has been through three years of absolute hell in dealing with the medical world from the very day he was born. It doesn't matter that they don't know how to treat his Rare Chromosome Disorder. It doesn't matter that they didn't know how to treat him when we come into the ER with collapsing spells. It doesn't matter that they put him through unneccesary IVs and starve him for hours and hours for tests that never happened due to the fact that no one wanted to call our neurologist to find out he'd just had an MRI. It doesn't matter that he's only 3 and that we have to travel out of town and out-of-state to get the help that we need. It doesn't matter that his own Neurologist who has been seeing him since he was 10 months old won't sign an card to ensure that we won't go to jail for giving him a medicine that comes from a plant. It doesn't matter that he's got a massive kidney and that a good portion of anti-convulsant medications are out due to the fact that they are metabolized in the kindeys. It doesn't matter that the only two medications that we have been advised are our last options can make him go backwards and lose the skills that he has worked so hard to gain. It doesn't matter that he's had to be in multiple therapies since before he could crawl - just so he was able to sit up. It doesn't matter that at 3 he still cannot even say Mama or that he can't feed himself because his pincer grasp is just now starting to work. It doesn't matter that the mass in his brain makes him feel pressure in his head so badly he'll slam his head into his crib for hours. It doesn't matter that the pressure from the mass in his neck that has been ignored for months has made him start hitting himself in the head and ear. None of what my son has gone through or will go through matters to them. They will not back the CBD Bill until the FDA Approves it. Which could take decades. THESE KIDS DON'T HAVE YEARS TO WAIT. But you know what? It doesn't matter that my kid doesn't matter to them. It doesn't matter that they told me No. It doesn't matter that our Neurologist doesn't have the guts to do what is right. It doesn't matter that our own Physician and our own Politicians have even advised us to do it anyway. None of that matters. He is my son. HE MATTERS. I am going to fight to get him access to a medicine that could literally change his world. THAT IS WHAT MATTERS. KIDS MATTER. LIVES MATTER. Hello, I have written to you (Bill Leaver and Kevin Vermeer) several times since June with no response. Julia is listed as a contact for media on the Unity Point website and I have not received a response from her either. I called and left a message for Mr. Vermeer's assistant last week and did not receive a response that way either. Incase you didn't receive them before, you can find them by scrolling past this email to the bottom as they are also included in this email. I have shared my story with the Des Moines Register, Associated Press, the President of the Iowa Senate as well as with all of the Republican House and Senate Members. Senator Grassley's office admitted that they were aware of your hospital policy not allowing your physicians to sign off on the CBD cards, which I found shocking. I also have contacts at most of the major news outlets for television as well. I am sure Iowans would be interested in hearing that the non-profit and publicly funded hospital who touts in their commercials about how much they care for sick kids are blocking an already extremely limited bill that parents fought so hard to get. Perhaps my last emails were too lengthy but it is difficult to share my son's story without it. I am not going to write why I think CBD is a good choice for my child. Your hospital has made it clear with its policy that you don't trust your own doctors let alone the parents of your own patients to decide what is best for their children. So I will just share with you some facts about my child's healthcare journey. My son just turned 3 this month. In those three years he has had to fight so hard to do things that other kids and families take for granted. Two years ago, I was informed that he has a mass growing in his brain and that the mass would most likely cause seizures and that it would require surgical intervention at some point in his life. The mass is circled in yellow below. Due to that mass, my son has to go through routine MRIs which are dangerous in so many ways to a young body. Yet, your hospital won't let us have legal access to a medicine which is anti-tumoural and anti-seizure. Instead - you would rather us put him through MRIs and multiple sedations to make sure it isn't growing. So every six to nine months we have to say goodbye to our son and pray that he wakes up from sedation and that he doesn't stop breathing during the procedure again. In addition to the mass in his brain he also suffers a Rare Chromosome Disorder called 7q31.31 which deleted the KCND2 gene, which also pre-disposes him to Epilepsy. He is just ONE of THIRTY-FIVE people in the world who are known to have this.
We learned all of this before he turned 18 months old. However, on top of that he was also diagnosed with Hypotonia (he was unable to walk until he was 30 months old), Sensory Processing Disorder, Microganthia and more. His diagnosis list doesn't stop there but due to the fact that you have zero care in the world for what my son is going through or what my family is going through. After all, your paid Lobbyist/Employee/Manager of Child Protection at your hospital 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.” We have seen three Neurologists and five Neurosurgeons. We have been to two Nephrologists (one who incorrectly diagnosed my son at YOUR hospital - forcing us to go to Iowa City), we have been to the CDD to meet OTs, PTs, STs, Developmental Specialists, we have put him through FOUR EEGs and FOUR MRIs and we have seen countless other specialists like Endocrinology, Orthopaedic Surgeons and Cranio-Facial Surgeons. We have been to the MN Epilepsy Group and are heading to Mayo for their diagnostic clinic in the upcoming months as well due to the fact that no one in Iowa can put the pieces together for us. I am writing you because I think that if you even took one look at these kids and the lives that they live you would understand that they need help NOW. My son needs reprieve. His Generalized Seizures and Abnormal Brain activity make is so that he never gets a break. Can you imagine getting shocked all day, every day and even while you are sleeping? Could you imagine how the lack of sleep would make a person feel? My son has never had a full good day. My son has never had a full night's sleep. My son has never had a summer or a spring or a winter without countless appointments and that doesn't even count his therapies. Can you imagine working for months and even years on learning words only to have them taken away by a seizure? Can you imagine how hard it is as a parent not to hear your child call you Mama? It is heart breaking to try to share his story with people who are so against a medicine that may have the chance of changing his entire quality of life. A medicine that has been proven in other countries and other states to be effective on Epilepsy. However, my son doesn't just have Epilepsy. He also has that mass in his brain that I shared with you. If that were your child - wouldn't you rather take the slight risk of giving him a medicine that could have the possibility of not only taking away his seizures but also shrinking that mass in his brain? A mass that all of our specialists are waiting to grow. A mass that has doubled in size since 2013. A mass that can cause life threatening and irreversible neurological damage. If that were your son's brain - wouldn't you want to take the risk of giving him a plant in lieu of waiting for the most invasive brain surgery there is for your toddler? If that were your son - wouldn't you appreciate the Executives at your own child's hospital taking the time to respond to your concerns? Please sirs. Change your policy on CBD. Please help my son. Sincerely, Erin Miller This is my son on Keppra.Dear Mr. Bill Leaver,
I am writing to you in regards to Blank Children's Hospital and my non-stop fight for the right to have access to medicine to help and not further harm my soon-to-be-three year old child. Your current Brand Campaign is "The point of Unity is you.” A touching slogan but not exactly true in its entirety based on my most recent experience with Unity Point Health and Blank Children's Hospital in Des Moines, Iowa. My son has a host of medical issues including Generalized Seizures, a Genetic Brain Disorder, a Cystic Pineal Tumor (a growing mass in the middle of his brain that requires MRIs every 6-12 months that require full sedation/anesthesia on my tiny child - which in themselves are dangerous and life-threatening), Hypotonia, a Rare Chromosome Disorder called 7q31.31 that has deleted the KCND2 gene that pre-disposes my son to Epilepsy and he has a host of other issues including global delays, being non-verbal, having an Intellectual Disability and more. We have had to fight tooth and nail since the day he was born to get proper care for him and due to hospital negligence from the moment he arrived on this Earth (not related to Unity Point) he has suffered endlessly. Some of which could have been prevented with proper medical care and attention. I read an interview that you did with The Advisory Board Company last May and you seem like such a kind, caring and compassionate man. I too grew up in a middle-class household in small town Iowa. I was the only-child to a single-mom who taught early education for over 30 years and my father was a Federal Employee for the entirety of his career with the Corps of Engineers and my Grandparents were farmers and business owners. Making a difference in other people's lives was something that my family prided themselves on and instilled in me at an early age. I grew up knowing that family came first but that you should also help take care of other people as you also mentioned in your interview last May. My son by definition of the Iowa Law has intractable Epilepsy. We have been seeing our Pediatric Neurologist since before my son's First Birthday. Literally, on the day of his First Birthday Party we were consulting with a world-renowned Brain surgeon in California about the possibility of needing brain surgery to remove my son's cystic pineal tumor. On New Years Eve came the news of the rare Chromosome Disorder that even your Hospital Staff admittedly know nothing about and can be of no assistance with, due to the fact that it is indeed so rare. By his Second Birthday he was labeled as having an Intellectual Disability, was unable to walk and it became clear he was globally delayed and non-verbal. The seizures had been intermittent up until then but this past fall diagnosed us with a Generalized Seizure Disorder and we have since tried and failed two Epileptic Medicines. The anti-convulsant my son was on turned him into a completely different little boy. He is currently still on Clonazepam (a benzodiazepine) which does nothing for the abnormal brain disorder he has. Even on the Benzo his brain still fires all the time - throughout the day and night in generalized spikes and slow wave complexes. I know that many families have tried 10 times that many medications and more and their children suffered greatly for it. I for one do not want my son to be a pharmaceutical lab rat. The side effects are scary and after seeing him on Keppra I am terrified of what may happen to him. In your interview with The Advisory Board Company, you stated that you "really encourage people to get out of their comfort zone and be willing to try and fail". I understand that is in reference to your employees and your branding but it should also apply unfalteringly to your patients as well. We have been through the ringer and back with specialists and sub-specialists and had even been told that our son may never walk - to him needing a jaw-distraction surgery - to needing a life-threatening and dangerous brain surgery - to a host of other issues and ailments that most parents have never heard of and that most parents should never have to see their child endure. However, we do this and continue to play this never ending game of doctors and specialists without ever getting any real answers, hope or help but no matter what happens we keep trying - even if it is endlessly out of our comfort zone. My son's Neurologist, your employee, is an amazing and kind-hearted person. They have gone above and beyond helping us when we really needed it. They have been humble enough to admit defeat when they didn't know the answer and instead of telling us that they can help us they have told us that they don't know how to help us on a number of occasions.Shortly after my son's most recent MRI he began to collapse. We were admitted to the ER and were told the next day that they (Our Neurologist) didn't know how to help us and that we needed to transfer elsewhere. We went on to the MN Epilepsy Group at the Children's Hospital in St. Paul several weeks later for yet another VEEG. However, that morning at UnityPoint/Blank Children's Hospital, we were actually having to share a room that night because your hospital floor was so full. After we got that news, our roommate asked for us to be in a private room because she felt that something like that was not meant to be overheard by a stranger and that we deserved to have a private room to mourn the fact that no one knew what to do for our child. Before, during and after that time CBD had been mentioned in regards to other patients having good experience and having visible and shockingly great improvements after using it. Our Neurologist was always very careful in saying that they were not "endorsing nor condoning" but mentioned on more than one occasion that we should go to Colorado to get help. However, Iowa Law has passed a Bill that enables our Neurologist to sign a Registration Application to make it legal for the parents to give this medicine to our children. I researched what I felt would be a good fit and finally approached them with a request to help us obtain the legal backing from the state by filling out what is actually a tiny portion of an application for us to have a license to carry/have on our persons the CBD. The law does not in fact hold the Neurologist accountable for what happens after. It just asks whether they have seen our child and treated them for intractable epilepsy for six months. Due to the fact that our Neurologist themselves had brought the CBD up to us , we were not prepared to hear that in response to our request to help us *not* go to jail for giving our son an organic medication that has the possibility of not only staving off his seizures but also shrinking that horrible lesion in his brain, we would get a very generic and non-personal response that said: "We, the neurologists at Blank, are not signing any authorization cards for CBD use. We went over the law with everyone here and we are not obligated to sign or prescribe. We feel that at this time CBD should be given in the context of the FDA approved trials only and there are other centers which are conducting those trials." Needless to say, this was not only a shock but also a blatant slap in the face for a parent who had gotten their hopes up. I had spent HOURS researching CBD oils and what would be the best strain to help reduce seizures and shrink my son's cystic lesion. I took a great deal of time writing the perfect letter to our Neurologist about why I feel that CBD is the best choice for my son as I am taking a great deal of time to write to you. Having a chronically ill child is TIME CONSUMING and to fight and fight and fight only to be shoved into the mud and be refused help is ghastly. Horrific. Soul-crushing. Cruel. And also, downright inhumane. We are talking about a soon-to-be three-year-old boy who has never had the chance to live a life without pain, without having to FIGHT or without his own brain betraying him with seizures and taking away his words. In your interview, you were asked, "What is "most right" about UnityPointHealth?" and you stated"What is "most right" is the culture and focus of our organization, from our board to our executive teams, to our physicians to our employees. They get what we are trying to do. We changed our vision statement four or five years ago, to "best outcome, every patient, every time." And people believe that is what they do, every day. What is right, whether we're talking about care coordination or how we integrate systems, the focus is [always] on the patient here. And I will tell you, moving away from hospital-centric—and that's what we were, four or five years ago—that vision statement was a powerful declaration to our physicians. That now the focus is not on margins, but best clinical outcome. And you're going to do that every time. Well what did people get into medicine for? To help people. And do you want to help them 90% of the time, 80% of the time? No, you want to help them all the time." If you truly believe in "what is right", I implore you to take a look at your business model again. You can say "The Point of Unity is You" but it's just a hollow promise if you aren't willing to take a risk (risks which you claim are important to take). If UnityPoint as an Entity is not willing to let their Physicians take a chance and do what is right for each individual patient you aren't doing anything right at all. If Iowa LAW feels that we have the right to have access to these medicines, it doesn't seem right that your entire Pediatric Neurology Clinic (which by the way was the *only* option we had in Des Moines when we started our journey) are not signing any authorization cards when they themselves were the ones that brought it up to us as something that could potentially help and change our children's lives. If your focus is truly on the best clinical outcome it seems to me that Blank Children's entire Pediatric Neurology Department is not only going against what you say is so "right" about UnityPointHealth but the very Hippocratic Oaths they swore to follow when becoming Physicians. If you truly want your Hospital to "help people all the time" you need to allow your Physicians to decide what is best for THEIR patients - even if that means taking a risk. UnityPointHealth should be about more than just a brand. You yourself even stated, "a leader always has to step up and do the right thing". Hospitals can indeed gain credibility or lose credibility. You even stated in your interview "A great depleter of credibility is when you don't address people problems. I say to our managers, when you have a people problem—fix it." There is a revolution in medicine coming. Instead of sending your patients to other cities and other states to get the care that they need - take care of them instead. Allow and encourage your Neurologists at Blank Children's Hospital to sign the Registration Cards for Canibidiol so we as parents can help our children the best. Help get the laws changed so you don't have to take the risk at all. Please, just do something. I think you said it best: "...When you don't address a people problem, everybody else in that work unit, in that department, that division, knows you have that problem. And when you don't address it, there are two conclusions that they reach. Either you're not smart enough to see that you have that problem, or you won't deal with that problem. That just depletes your credibility. You didn't do the right thing. They can't trust you now to do the right thing. That's why a leader always has to step up and do the right thing." Please sir, I implore you to step up and do the right thing. You already have a people problem and its only going to get worse. When it comes down to it, UnityPoint is a business and you are losing business. Hundreds of thousands of dollars are going to other hospitals in other cities and other states as they are wiling to stand up and take the risks that you as CEO claim are important to make. Just as I - as a parent - am willing to stand up and take the risk in saying that I want to be able to CHOOSE to give my child a medicine that came from a plant instead of a lab and all that is standing between me and helping my child is your employees signature in a box. An employee who has said that this medicine may be able to help our child. It's that simple.That's it. Please, step up and do the right thing. Help parents such as myself gain access to CBD without having to risk everything to do it. I don't want to have my son be a medical refugee in another city or in another state simply due to UnityPointHealth being unwilling to stand up and fight for what is right for parents and children who are suffering endlessly with debilitating diseases. Sincerely, A worried Mama Hello, Everyone! We have been in the Children's Hospital since Wednesday morning. I have to share that this place is amazing! Everything is such a vast difference in comparison to the care we have received previously. Even the ease at getting the sensors glued to his head to the way they wrap him up and the pack that they use. Instead of being confined to a tiny room on a short length of cord he's in a large room and is allowed to go on a battery pack to play out in a central area with other kids. The nursing staff is nice. The Neurologist/Epileptologist comes around 2-3 times a day and is informative, friendly and helpful. They started to ween Abe off his Klonopin the first day to try and instigate a seizure. So far he hasnt had an "episode" but his EEG shows multiple bursts of epileptiforms throughout the day which is indicative of seizure activity. He had been very lethargic and sleeping A LOT which is very much not Abe. He has been very cuddly though so I'll take the cuddles! The plan seems to be to add in Keppra, an anti-convulsant and slowly take him off the Klonopin once we get back home. Due to withdrawal issues that has to happen slowly and with his sleeping issues we may keep a night time dose but aren't sure in that yet! So, for now we just keep waiting! Thanks again for being amazing and for caring about Abe. Hello, Everyone! Things have been moving along as we now are only a week away from being admitted to the Children's Hospital in St. Paul, MN via the MN Epilepsy Group. Since my last update we had visited with Abram's Pediatrician who prescribed him a sleep medication to help him get some much needed rest. However, after just six days on the drug we realized that it was not a good fit for him. He was becoming very aggressive with his moods and three of the six nights Abram and I landed on the couch sleeping together as he just couldn't settle himself in at all. On the last night, he drenched two different jammie sets in sweat but was only 97.7 for his temperature so I called his Pediatrician and they had me ween him back off. The drug is also used to bring down blood pressure and heart rate and it was having quite the adverse affect on him. We are now officially off and tonight will be the third night. I'm hoping he gets some rest! We spent a lot of time outdoors today so I'm hoping all the nice fresh air will get him some sleep tonight! Our Neurologist finally called us back today as well to tell me that the sleep medicine was not something that he would not have prescribed. Then when I asked him again about the new cyst that was reported in the Radiologist Report on his March's MRI he asked "What new cyst? I didn't even know there was one until I saw your email."(This is the kind of stuff that infuriates me.) But I digress. He is a good kind man and is doing his best. I'm just frustrated that the fact that: 1) I asked him directly about this in the hospital and he dismissed me with his hand like he was shooing a fly 2) The cyst is IN the Radiologist Report and 3) the Cyst is Flagged on the MRI. I just can't wrap my brain around a Neurologist NOT looking at an MRI that they themselves ordered but he promised to go over the images from March at our next appointment with him in June. It is what it is! I honestly feel guilty even sharing that tidbit but it's things like this that help people understand what we go through. Every single family I meet that is suffering with the unknowns of brain cysts, brain lesions and benign brain tumors as well as Epilepsy all go through the gamut of doctors where we all feel like we're chasing our own tails. This is the norm, not the exception but honestly, it feels better knowing that it's not just us! The good news is we are off to a Nationally Recognized program that even the Director of the Epilepsy Foundation here recommended and confirmed as a good place to go. She was kind enough to chat with me over the phone again (we had spoken on the phone last fall before Abram's Epilepsy Diagnosis) and put me at ease that the people we have been discussing Abe's case with (Dr. Chugani in Michigan and Dr. Weiner at NYU) are highly regarded in the field of Epilepsy so she helped me to feel a lot less frustrated and more like we are on the right track! One week from today, Mr. Abe and I will be in a hotel in downtown St. Paul. I'm hoping to get there the day before to get a day of fun in before we're confined to a hospital stay for 10 days or less! Much love to all of you. Thank you again for all your help. We literally couldn't be doing it without you. xo Abram's Mama 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. I have been unable to update this blog in some time. A lot has happened in my family's life since my last post. In November my son was diagnosed with a form of Epilepsy and was put onto anti seizure meds in December. That adjustment in itself has been a roller coaster.
We also moved into a new home, in a new town about an hour away with my Mom. We now live in a multi-generational home and it has been such a great burden off our backs to have some help! Abe however continues to struggle. The first month on his meds seems like a godsend but now just 90 days later we are back to no sleeping, absence seizures and behavioral issues that suggest that something is really hurting or bothering him. We even had to page our Neurologist on a beautiful Saturday afternoon to ask for advice on how to best help him and him being the wonderful man he is - took our phone call when he was at home with his own family. So for now, we have upped his medicine to a stronger dose as the bloodwork revealed it was still sub therapeutic and he had some low areas on some tests as well including his ATP and his red blood cells. We go back next week to retest the blood. I'm praying that the blood work is just a matter of a nutrition issue with his food since he is such a picky eater due to his SPD but we are finally starting Feeding Therapy this week as well! I couldn't be more excited about that. It's been a very long wait to get in. At this very moment - we are waiting to hear back from our Neurologist as we finally had the ability to connect him with Dr. Shahinian at the Skull Base Institute in Los Angeles. Although he is unable to do Pediatric Surgeries at his current hospital, I feel that at this point he is the best point of reference for our Neurologist and for my son to get the care he needs since he has been following him since 2013. Truth be told - thinking of my son having to have brain surgery is absolutely terrifying and I would love for that to be a choice that he makes for himself when the time comes. I am unsure if that is going to be an option for him at all but our Neurologist feels that we NEED A PLAN in case something emergent arose and we needed help. A few other options have opened up for second opinions but right now - he has so much going on the mere thought of starting over with a new Neurosurgeon is overwhelming but I do know a few moms submitting their child's files to Barrow Neurological Institute so I'm excited to see what assistance they may be to help the children and toddlers suffering from these lesions. Abram just woke up from his not-napping at all really... so I have to run... but wanted to update what was going on. :) 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.) |
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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