Dear US Senator Joni Ernst,
I was in the Drake Diner in Des Moines, Iowa the day you came to celebrate your win for the US Senate. I was sitting in the booth right by the front door. I had my small son who was two at the time and you had a large group in the back who cheered loudly and clapped for you as you came in.
You didn't notice that when your group of supporters began screaming for you, that my son slammed his head twice on the edge of table. The noise your group suddenly made (without regard to any of the other patrons) both terrified and overwhelmed him. The metal edging on those old vintage-style tables there really did a number on my son's forehead and he had a lump and a bruise for over a week. Two of your supporters noticed my son in hysterics as they walked by. Instead of smiling or offering some form of apology for the uproar, they sneered at us as I was trying to calm him down. I'm sure they saw the huge welt on his forehead and thought of me as a terrible mother. They were both still smoking outside when we left.
You didn’t acknowledge my son that day in the Diner and you aren’t acknowledging him now. So, it didn’t surprise me when you accidentally sent me the response to "crude oil" instead of "cannabis oil" to my e-mail. It’s those little attention-to-details things one has to do when someone truly cares about their people. I was pleased to see that I received an additional e-mail today with your response to "cannabis oil" instead of "crude oil" today.
The bare-boned truth here is you didn't take the time to actually hear what my real concerns were at all. My name was just pasted into a bulk e-mail (just like the "crude oil" response) and sent on out, without any real regard to what is happening to people in the Unites States of America, let alone your home state, Iowa. You yourself claimed in your campaign that you are a “normal, everyday” Iowan. If that were true, you would listen to the concerns of the mothers and families in this state who are reaching out to you for help in Iowa and in Congress.
I was fully aware that you supported the extremely limited bill in 2014, as an Iowa Senator. That is precisely why I reached out to you. You spent a great deal of your letter explaining to me what CBD is. Clearly, I already know what Cannabis Oil is used for or I wouldn't have been reaching out to you for help in the first place. My son has Epilepsy, a Genetic Brain Disorder, a Rare Chromosome Disorder and a long list of other diagnoses you have never heard of and thanks to CBD, my son is 125 days seizure free today!
I reached out to you because I wanted you to know that the "narrow limited use of a marijuana plant" is not working for my particular situation or hundreds of other families. I wanted you to know that children are suffering in your state. Parents are forced to walk a supposed "grey area" in the law and fear that their children will be removed from the home because they are doing what is right. I reached out to you because our own Neurologist (who we'd seen since my son was 10 months old) told us we should to try CBD and was unable to help us. I reached out to you because our state capitol's only Children's Hospital will not back its use without FDA Approval and our Neurologist had to follow protocol. I reached out because that same Hospital actively lobbies against important bills that could help children like mine at the State House. I reached out to you because suffering children and adults need you to stand up and do what is right in Congress to fix things for families like mine.
Never once in my conversation with your Regional Director did I request "the opening of medical marijuana dispensaries and the use of medical marijuana in general" as you mentioned in your letter, although I feel that is the obvious thing to do when you pass a law for things like CBD but don't allow access, like we have here in Iowa.
What I did request was help for my son and for the children in Iowa to have a chance at using a natural, plant based medicine as opposed to the Pharmaceuticals that just keep piling on with every serious seizure. Pharmaceutical Drugs were the worst thing that happened to my son, thus far in his life. Not only did they create new and worsening types of seizures - they took away his ability to walk (for which he worked for years to be able to do) and they took away his words after a serious fit of side effects from the Klonopin. (We later found out he was on too much but that took us going to a World Reknown Hospital hundreds of miles away from home and five months waiting on referrals.)The Keppra he was put him on made him have serious behavioral issues where he did not stop screaming or crying for nearly 14 days straight before our Neurologist pulled him right back off of it.
You claimed in your letter that the "concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing" but that simply is not true. The research is there and in fact, the United States Patent 6,630,507 now held by the US Department of Health states cannabinoids are "substantially free of psychoactive or psychotoxic effects, are substantially non-toxic even at very high doses, and have good tissue penetration, for example crossing the blood brain barrier." In order to hold a patent, did the Government not do enough research themselves? Cited references within the US Patent go back to 1942 so clearly it is not a new concept at all.
My son is not a sympathetic story. My son is a little boy who deserves the same quality of life that all of six of your grandchildren deserve. He deserves the right to think and laugh and smile and be awake and alive instead of being drugged into a stupor on Pharmaceutical drugs whose side effects can be worse and more damaging than the seizures themselves.
If you truly understood how patients, including children like my son are struggling, you would not hesitate to stand up and do what is right in Congress. You have the power to help suffering Iowans and Americans alike.
Dear Mrs. Miller,
Thank you for taking the time to contact me about the use of marijuana for medical purposes. It is important for me to hear from folks in Iowa on policy matters such as this. Additionally, thank you for sharing your personal story about your son and your family.
Currently, some form of marijuana usage is now legal in 38 states, including Iowa. As you know, the medical use of cannabis oil extract was legalized in our state in 2014, and I supported this measure during my time as an Iowa State Senator. Cannabis oil is derived from marijuana plants and is typically used to treat epilepsy. It has high concentrations of cannabidiol (CBD), a non-psychoactive antioxidant, and low concentrations of tetrahydrocannabinol (THC), the mind-altering compound found in marijuana. Though I supported this narrow, limited use of a marijuana plant extract, I have concerns about the opening of medical marijuana dispensaries and the use of medical marijuana in general.
The concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing. Before being introduced to the market, commercially available pharmaceuticals are subject to years of research and testing in order to prove their efficacy and safety. As you may know, marijuana is classified as a Schedule I substance, a label assigned by the Drug Enforcement Administration (DEA) to drugs which it deems have high abuse potential and no medicinal value. Many contend that this classification makes it more difficult for scientists and researchers to study marijuana.
I understand that a number of patients, including children like your son, are struggling with chronic diseases and use marijuana for treatment. More research needs to be done on the medical use of marijuana and I would also like to see more evidence that the substance can be distributed in a safe, responsible, and controlled manner.
Please know that I will continue to keep your views in mind as Congress continues to work on this issue. Feel free to contact my office with any further information, as I always enjoy hearing from Iowans.
Joni K. Ernst
United States Senator
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.
A worried 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.
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.)
It has officially been two years since my son came into the world. It blows my mind how fast the years went yet how long the days have felt this entire time. Abram has come so far since his last birthday. Last July he was unable to sit, hold his own bottle or bear any weight on his legs at all. As of his second birthday, he can walk with the assistance of a walker, hold his own sippy cup and loves to cruise around the house via the walls and furniture. The older he gets, the further behind he gets developmentally, so we are still going strong with therapies and he is now starting speech therapy as well.
It is hard to realize that your child will have to work so much harder for all the things other parents take for granted. This doesn't mean that I don't want to celebrate in the milestones of my friend's children because I DO. I always am in awe and excited for the kiddos who were born much later than Abe who are already walkin' and talkin'. I just remind myself that I got lucky because I got to have my little baby be a baby a little while longer than everyone else. (Although, the damaged ligaments in my wrists tell my body otherwise: carrying a 26 pound toddler everywhere is hard work and not easy on the bones. "Getting old is the pits!" my Grandpa used to say. Now I get it.)
As most people do, I have been doing a lot of reflecting over the last two years. Abram's Birthday will probably always bring up a host of emotions. I can only hope that someday the trauma of his birth and all that ensued afterward won't sting as much. I often still wonder if the events of his birth and the fallacies of the Hospital in the days following his entry into the world are the cause of his issues but I can't allow myself to linger in those thoughts for long.
I will always grieve not remembering holding him for the first time because I was so drugged up after an emergency C-Section that went awry. I will always have the guilt of "what-if" the nurses had attended to his oxygen levels sooner. I will always wonder deep down inside if there was something that I could have done to prevent these issues my son and our lives have had to endure.
Not many people have to endure that kind of grief. It is a deep, hollow and echoing grief that sneaks up and slaps you across the face with it's utter bleakness. It is a gut wrenching sadness having a child who can't tell you what hurts because they are unable to speak. It is a never ending heartache not being able to do the one thing a Mama is supposed to do for her child..... the ability to make things better. To not know what is hurting him or what he needs is horrific. To NOT KNOW the name of the thing that has taken over your whole life hurts so bad that sometimes it makes my throat close up in order to stop the tears from flowing. (Like right now as I am writing this.)
When people ask what is "wrong" with my son, it. Is difficult to explain because it is not just one thing that affects him. Each little diagnoses that my son has includes a huge list of symptoms that affect his daily life in numerous ways and it is impossible for anyone who isn't living it to even get. That is not to say that other mamas don't have it rough or have a bad day but I think it's hard for people to fathom just what we go through on a daily basis.
Unless you've sat on the other side of a two-way mirror to watch your child scream-cry for over a year in order to do something as simple as bearing weight on his legs... you have no idea. Unless you have a child with serious sensory issues there is no way you can get it how much it impacts my son's everything from clothes and eating to playing, socializing and playing. Unless your child has Hypotonia you have no idea how long it takes for my kiddo to reach a milestone. Unless your child has a mass in their brain- there is no way you can get it. (Just how there is no way I can get how hard it is to have an even more medically fragile child. Until you've lived it - you just cannot know.)
So, when I say "You are so lucky" to parents of typical children - I mean it. Just like I am so lucky that Abram doesn't have even worse symptoms or diagnoses but I always speak with those parents enduring more than I can imagine - I always speak to them with integrity and respect. So please, if you know someone going through something similar just be kind.
Don't make offers to help - Do something. Say something. Be there. I see this a lot in other blogs as well so I know I am not alone in this feeling. Send a card. Send a text. Leave a book for them to read on their doorstep or a silly toy. These are things my friends have done for me. You have no idea how much it cheers someone up to find a dinosaur bath toy, an old silver bowl(who did that btw?) or a Mac Tonight wind-up can do for the soul.
NEVER tell a parent with a special needs kid that you have it just as hard if you have a healthy child. I have friends with both typical and special-needs kiddos and they echo this sentiment as well. Parenthood is hard enough for everyone. However, going through a non-stop health crisis since the day your child is born is nothing to scoff at or belittle.
I had written a blog entry about Abram's Diagnosis that we received on New Year's Eve. I had made it my mission to find out what 'it' was that was affecting my son's development by the end of 2013. We'd been fighting for an answer since the day he was born in the summer of 2012 and I was not expecting the flood of emotions that I would feel after getting a diagnosis that involves a rare chromosomal disorder due to a micro deletion of Chromosome Seven; labeled as 7q31.31.
This diagnosis explains many of Abram's other diagnosed issues such as global developmental delay, his hypotonia as well as quite a bit of his behavior issues but unfortunately the Macrocephaly and the Cystic Lesion in his brain are unrelated. Alas, we are doing all that we can do to monitor that situation but I must admit that as I was reorganizing Abe's medical records yesterday, my gut dropped to see pineocytoma there in black in white under what we discussed with his Neurosurgeon in November.
I think I've been in a bit of a shock. I read and re-read the pamphlet from Unique about the commonalities of diagnoses, symptoms, etc and it was relieving to read quotes from parents who have children with a similar diagnosis. A lot of what seemed unanswerable to most of our doctors was explained, finally. I was prepared to get not so good news and even though these issues of Abe's are life-long problems, it was a big burden off my heart to know officially that this was indeed just how my son was made and not caused by his traumatizing birth. There was nothing I could have done to prevent his disorder and that alone was worth the struggles and fight we had to get here!
It hurts deep to know that the things that make your son hurt and struggle cannot be 'fixed' or 'grown out of'. It is world crushing news. It is hard and it hurts and I have days where I felt like I was ready to be okay with it and other days where I wanted to feel sorry for myself, my family and my son. Last Monday, I talked about my feelings with my favorite AEA gal and she made me realize that its okay to grieve, that it IS painful and that in order to move on, I needed to grieve that loss. It was then that I realized I hadn't let myself cry and that my husband and I hadn't even really talked about it. It hurt too bad. Friday we finally talked about everything. l had a good cry and I woke up in a different place and am trying hard to stay there.
Abram is a lot more than a long list of symptoms and diagnoses. He is a wonderful, brilliant little boy whose smile lights up the room. He is clever, funny and spontaneous and has already taught me a great deal about the importance of living in the now and the value of patience and persistence. He has come a long way in the last six months and I can't wait to see how far he goes with his therapies in 2014.
I am thankful for my little boy and all the amazing people he has brought into it. Motherhood has been a crazy ride so far and I wouldn't change any of it for the world.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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