House Resolution 298 – Advocate Epilepsy Awareness!

The Epilepsy Foundation of Greater Chicago has drafted a bill, the RAISE Act (Raising Awareness and Insight into Seizures and Epilepsy), and will continue to push for its introduction.  RAISE would make it safer for students, workers and citizens with epilepsy to access emergency care, continue employment, and achieve an education.  The Epilepsy Foundation strongly supports House Resolution 298 as a first step toward the introduction of the RAISE Act that would create a national epilepsy awareness campaign to increase the understanding of epilepsy and seizures in the workplace, schools and communities.

AJ may or may not have epilepsy – however I have come in contact with so many people, who they themselves have epilepsy, or who have family and friends who do, and so many of them children. As you all know I am having conflicts on the spiritual front, but I do sometimes believe things happen for a reason – and this disease was brought to my attention for some reason and thus I feel moved to advocate for those with this disease, or seizure disorders in general – regardless of her outcome.

Remember, in a previous post of mine I mentioned that there are 3 million people afflicted with this disease in the US (50 million globally). This disease is as common as breast cancer, in fact this disease is dated as far back as the 5th century (if not farther) and still has nearly the same stigma now, as it did then. Yes, we may not be burning people at the stake because we think they are possessed by demons, but people with epilepsy are still treated fairly poorly, due to so much that is misunderstood – and the numbers of those afflicted only keep growing, and 1/3 of them never find out why.

Also, sadly, treatments for this disease have not evolved fast enough as people need them to – the blame: the limited funds the foundation receives for research on an annual basis (and it’s about to get worse: http://on.fb.me/p2fDx2 ). So many people learn for what to look for well after the seizures have done damage to the brain. The internet has helped some of this evolution in the amount of knowledge shared – but even once a person knows what to look for – the causes, triggers and even finding the right medicine becomes a challenge and sometimes as (or more) harmful as the seizure itself.

While not trying to sound like a late night commercial that tries relentlessly to pull tears from your tear ducts: I do hope you will follow me and help support this resolution for the millions out there with this awful disease.

The info: (As taken from  Epilepsy Marinhme Facebook page) “The U.S. House of Representatives House Resolution 298 is a bi-partisan resolution to help raise public awareness about epilepsy.  As many of you know, increasing public understanding about epilepsy and seizures is one of the Epilepsy Foundation’s top priorities.  House Resolution 298 is a great first step – strong support for this Resolution will help in the Epilepsy Foundation’s fight to educate everyone about epilepsy and give us a huge boost toward legislation that will help make every American “Seizure Smart”.  Attached are letters for constituents of each state.  Download your state’s letter, edit the capitalized phrases with your personal details, and forward the letter to your Congressional Representative.  Find your Representative’s location information at http://capwiz.com/efa/dbq/officials/” (Epilepsy Marinhme, 1)

I am a small voice, and have a limited readership, but I hope that if you are reading this, you might forward it on and help them make a huge step forward. Thank you!


God are you there?

Last Tuesday, before the rush to ER, I broke down in the shower and cried like I never had before. I have been feeling quite alone in this battle in trying to find out if my daughter is truly sick – being diagnosed with Epilepsy and wondering what her future will look like. I am agnostic – there was a day when I believed in things greater than me – even a bit of the supernatural. However my experiences brought me to truly question any existence beyond what we have here. I rely heavily on scientific proof and this far, obviously nothing has shown me otherwise. I have to be honest and admit that I find worship to be the place for answers when we have none – to make us feel like things will be OK because there is something else at hand. I always feel there is a better way of dealing with things.. being realistic.. but then something turned inside.

I did what a lot of people do when they are in a crisis and have no where else to turn – I directed my voice toward the universe in hopes something out there would hear me. I prayed. I prayed that the truth of AJ’s illness come forth, that she have as normal a life as she can – (in our societies definition of normal) and that I have the strength to be her constant advocate and make the right choices.

Then Wednesday came and she suffered what the drs called a Grand Mal – but after 48 hours of observation they never picked up a seizure. Was this God answering my request? Truly this went through my head. Since then, everyday I am now in constant wonderment and inside me I kept telling my self I needed to talk/write about the experience.

Does this mean if things go for the worst that I will exclaim there is no God – I may, I am human after all.. but I suddenly feel this strong hand on my shoulder and that feeling has to mean something.


Updates

Last week: My sweet AJ was rushed to ER on July 13th – nice and early in morning while her dad was in Yoga.

I went to put AJ in her crib, slightly awake in hopes that she would take a nap since it was 6am and I am not a morning person nor is my preschooler – so I was hoping for a couple of extra hours. I watched as she squirmed and groaned and then she went into an episode. Her head started to tick from the right side to center and then back , then her arms started to hit the bed, and then the legs – I was told later she had a tonic clonic, aka: grand mal – but the lack of synchronicity was due to the lack of motor skills at this age.

I had been videoing it for the neurologist since the next day we had to go in for a LP and blood work and I wanted to show him the change in presentation and length of time since the Keppra was started. Then I noticed it was reaching the “3” minute mark – I tried to rouse her out of it – no response – then she went completely limp – still no response. It was after the 5 minute mark.. I kept questioning myself if I should call 911. I was apprehensive that as soon as I would call them she would snap out of it. Forgiving myself that could happen I called. 3 minutes later the police came and he was the first to assess her – no response – but good vitals. The Paramedics came in shortly after – limited response, they thought she felt hot (this can happen in a seizure) so they undressed her and finally roused her out.

I tried calling and texting my husband, knowing full well it was for naught since he was in class – but at least he would get the message(s). My daughters and I got into the ambulance and off to the hospital we went. Her oxygen dipped a little while in there so they gave me oxygen to blow over her nose and mouth (not mask). Finally after what felt like an eternity, we reached the hospital. The hospital began to check her vitals, but since she was diagnosed with epilepsy they immediately began to get her ready for a second transport to The Children’s Floating Hospital in Boston.  My husband at this point got the message but was far from getting to the hospital so I had to allow them to take my baby while my oldest and I had to stay at the hospital. (They didn’t have a booster for the oldest so could not transport us together.)

Now to shorten the Tufts experience, essentially they doubled her dosage of Keppra and attached her to an EEG machine. They observed her for 24 hours,  saw her have physical seizures but did not capture EEG seizures, possibly due to the Keppra. So they had said they wanted to do another 24 hr observation without the Keppra. Technically, since they gave her another double dose at 9am that morning the 24 hr observation should have started at 9pm – but even more technically Keppra takes about a week to completely get out of the system. So I knew that the possibility was strong that if Keppra was hiding something, that it still would be. The drs told me that if they did not see seizures Friday, they would let us go home off the keppra at 5 pm. While the prospects of going home were obviously positive for us – I knew that we still risked a seizure and because the knot in my stomach was not feeling untied and I still felt sick over her abnormal EEG, I was not feeling comfortable with the idea of going home yet.

It wasn’t helping that the doctors were not 100% confident at what they were seeing – they knew she wasn’t having EEG seizures (at the time), but saw her have physical seizures and black outs. This meant they obviously did not have an answer for the abnormal EEG.  They want as far as to entertain the thought they were seeing a possible transition from neonatal status to full infant status. They stated that it was possible she suffered from some amount of neurological retardation due to the maternal environment she experienced – but because she was catching up so quickly that the electronic synapses were firing hard and strong to make connections. Yet they can’t prove any of their theories, but felt comfortable sending us home.  Yet due to their underwhelming confidence I basically told them that either she stay longer due to being in a safer place than home or they were going to send me home with an ambulatory EEG device to capture data over the weekend and a visiting nurse – impressed by the suggestion , they agreed.

This past Monday we went back to have the electrodes  removed. They have since downloaded the data and I am waiting for a review of the data. Hopefully by Wednesday I will receive a preliminary report of all of the EEG findings from last Wednesday through the weekend. From there we have a few paths we may go down:

  1. They find seizures, but since the double dose seems to control it, we will continue the meds
  2. She has no EEG seizures – and the abnormal EEG has to be answered for…
  3. She has something else – the abnormal EEG still needs to be answered for…
  4. She does have a seizure disorder, but we do not know for sure until she has reached the age of 24 months

Thursday we have Early Intervention coming to the house. They will observe her and hopefully allow your to be part of the program so that we can ensure her development does not get hindered by the seizures or what ever is wrong…

So for now the path is very unclear and messy with obstacles, but I continue to hold her hand down it and hope to God that we find a rake along the way to smooth out this life’s trip for her.


The diagnosis and moving forward

So I am a little behind, but I think that is OK. It’s been a rough and trying week.

The MRI came back normal – thank goodness. Now it means this is likely a genetic disorder – and since neither of our families have been able to confirm anyone ever having this, we have to assume this genetic mutation is new to the “family”. From here we focus on the medicine and hope it curbs the seizures. I am not comfortable giving a newborn this kind of medicine, but I understand not doing so means I could, and likely would, lose my daughter.

AJ’s acclimation process with Keppra has been a trying one, but I am hoping we are getting there. As of now the seizures have majorly changed their presentation. She is having clusters of seizures – some are getting much longer – so far the longest being 2 minutes. These long ones get me nervous, to the point I say her name, touch her face in hopes to snap her out of it. I can’t let her go to 3 minutes, otherwise we risk extremely adverse situations. It also scares me that what I see during the day, may be happening at night – while I am in bed. We talked about those special mats or even shirts you can buy that detect odd movement – but what newborn do you know that doesn’t have some kind of odd movement? So, unfortunately at this age it would render useless for us.  So here – even this agnostic girl prays.

Friends and friendly acquaintances of mine have told me many stories of people they know, or they themselves, who have had to deal with seizure disorders and how they grew out of it. I always ask “How old were they, you, when the seizures started?” and so far the response is late childhood, early teens. AJ is one month, and even the pediatric neurologist states that her starting so early is worrisome. Sure I can try to remain hopeful – but I am not going to sit here with rose-colored glasses and think everything is peachy-keen. She is so young, and so far trying to find related medical or individual information for newborns and seizures has been limiting – mostly  the information I have found has been related to children who are 3 months or older.

All I can do now is be extremely watchful of AJ and any changes in her, or the seizures, that seem out-of-place. I am, and have been, reading up on everything I can (knowledge is power) so I can be very aware and cognizant of what to expect down the road should things go in the wrong direction. I also have been studying this so I am aware of the daily things to consider if we are able to get them under control: like ensuring she gets enough sleep, limiting some amount of stress, possible diet changes etc. I want to know of every therapy, medicine and anything new that could help improve her life.

I will admit though it is very disheartening to know that any new scientific findings  around epilepsy will be limited, at least for the foreseeable future. This disheartened feeling is not just with respect to my daughter, but also anyone having to deal with these types of brain disorders. There are 3 million people in the US and nearly 50 million world wide afflicted with epilepsy. Nearly, or exactly, as common as breast cancer. Yet, it is one of the lowest funded for research. On top of that, 1/3 of those afflicted, do not respond to the medicine. So, what is modern science doing for them? It baffles me how something like this just gets over looked or shuffled around. Of course, I would never have known how our government tries to ignore these diseases if it were for AJ’s diagnosis.

We have a 24 monitoring session scheduled soon.  When she was given her first EEG, it came back abnormal, but they didn’t get any seizures, they only physically saw them. This test will hopefully give us a better indication of how many and what we are really dealing with. Until then, its medicine, note everything we see, communication with the doctors and try to remain positive, at least for her sake.


One of many hard days…

Today was a rough day, and I know I stare down a long road of days that will be similar. It started out OK, at least for me. My husband had the 5am feeding and apparently AJ did not want to go back to sleep. My other daughter and I were woken at 7:30 so I can get her ready for day camp. We don’t let her go often because of finances, however I promised her that she could go for a full day – one day this week – she really wanted to have lunch there. (She just turned 4, so it’s the small things that get her excited).

I got her ready, and sent her and my husband off. I fed AJ, played some classical music, and after her feeding sat her on her mat and we “played”. As well as a newborn can play… after some time passed she was ready to eat again. (It was one heck of a work out.) This is when the seizures started. I must have seen one right after another for a good hour – her feedings and ability to sleep totally hindered. Even way after the cluster, she was having a hard time eating – it is almost like she forgets how to, she makes a high pitch sound and as much that does go in, comes right back out.

Throughout the day she had many seizures though, and seemingly longer as well. They are still under a minute, which is considered mild, but to see so many one right after the other makes me very worried. I feel like I am watching something take away my AJ. On one hand she shows to be a healthy baby girl who plays, makes the most adorable sounds, is alert, curious etc and then I watch as my daughter is knocked unconscious or unaware, I watch it go through her body from her head, to her face down her arm and legs – I watch this thing take pieces of her away.. or at least those are the dark thoughts I have when I watch her have a seizure — all I can do is watch and hold her, tell her I love her and ask that she be alright, all the while feeling helpless.

I am sitting here staring at her now, finally she is asleep. I wonder what tomorrow will be like and what we might learn from the MRI. I hope we learn something that will put us on a path of recovery.


Welcome AJ

On June 2nd 2011 a new little being was brought into this world. A beautiful 7lb 5 oz 19 1/2in long baby girl with so much hair, she could make a bald man cry.

The pregnancy was less than fun, and to be frank if this had been my first pregnancy, I am not sure there would have been a second. There were many scary moments – there is nothing like spending the 2nd month of pregnancy being told there was a 50/50 chance of the pregnancy being successful. Fortunately, the issue during that time resolved itself – but a new one in my last month of pregnancy reared it’s ugly head and had me frightened enough that I created a written will and special letters to my daughter(s) and husband – which thankfully I did not have to share.

The issues this pregnancy dealt me had me feeling very guilty though – guilty that each of them could be my fault. You see, I deal with chronic migraines. They are pretty much under control. When I have them (usually 1 episode a month that last 3-4 days) I take a medicine named Zomig. It helps relieve much of the pain. During my pregnancy though, they got out of control and I had to continue to take the medication after trying general OTC’s – which didn’t work.

As the pregnancy went on, and complications arose, I kept wondering if it was the medicine. However, I kept being encouraged that things should be fine, especially after early screenings for birth defects came up pretty clean. Both my doctor and husband thought I was being a bit neurotic and I would be told “think positively”.

So I breathed and hoped, and after getting through some last scary moments of my pregnancy Addison Joy (AJ) was born. Once we heard her cry both my husband and I cried. Although he told me I was being too much of a worry-wort during pregnancy, he was just as worried – so when we both saw her and heard her cry, counted her toes etc etc, we were so very relieved. We both could not wait to hold her. The nurses and drs checked her over and thought she looked great – no issues, no need for NICU, we had ourselves a beautiful military issued baby girl

After having spent 2 weeks previously in the hospital, and being able to have a typical birth, I went home the next day. I wanted to get back to my little girl at home and the rest of my family. I was apprehensive though. My oldest (at the time 3, she just turned 4 [Happy Birthday Abs]) is a rather exuberant child who has a very hard time playing by herself and not having someone by her side all day – that someone being me. I knew having a little one would be difficult, thankfully though my husband’s family was up to help us acclimate and get us onto some semblance of a routine.

I was able to bond with my newborn as they took my oldest out to play – I noticed right away something that looked like seizures – eyes rolling back, facial twitches – but nothing with the body. Which sent me back in my memory as to feeling tremors in my pregnant stomach. I even asked my OB if babies could have seizures in utero and if you would be able to feel them – but as I watched my daughter I also took note that she could be falling asleep – just with her eyes open like babies do at this age. I didn’t say anything because my family knew I was beating myself up through the whole pregnancy, and I didn’t want them to think I was still being a worry-wort.

During her second week of life, I kept noticing these “things”, mainly during early morning feeds. However once I started to notice a true pattern the beginning of the third week of her life, I called the dr with my concerns. Prior to calling him I did do what every loving (and neurotic) mother does – search google high and low for information – too much info – but there was one piece of gold that I found that allowed me to show the dr what i was seeing – it was this youtube.com video: .

This was the moment I knew I had a really great pediatrician – right away he got us into see the chief of neurology and his staff at the Tufts Children Hospital in Boston. They are an amazing group of doctors. We came in, I finally had my own video to share, and shared our story. They told us we would not be leaving the hospital without a plan. Originally we were there for an evaluation and EEG, but they added on a ultrasound as well. They wanted as much info as possible to help my little girl.

I wish I could leave this post and say – I was crazy and she is fine – just odd sleeping patterns. Unfortunately however, she had an abnormal EEG with hi-voltage patterns which indicate the likelihood of seizures. The ultrasound came back clean however – showing that there are no large abnormalities causing them. They have placed her on Keppra and tomorrow we go in for an MRI. The seizures are not under control yet though – just changing their presentation – but she had to be put on a rather low dose since her first dosage of the serum sedated her. So hopefully by the end of the week we will get them under control when we can raise the dosage – and also hopefully we will know from the MRI what her prognosis will be.

So now if you have not guessed it, the intent of this blog is to write about my daughters and my experience as a mother. I am sure many of the posts subsequent from this one will be focused on AJ and our experiences, especially for the next few months or so – as I hope to provide information that helps someone else, like the youtube video helped me. However, in addition to this, I will post about being a working mother, a mother who goes to school, childhood, milestones etc.