Friday, September 13, 2013

Grief and guilt - Life with a child with special needs.



Disclaimer- this is my personal blog. By no means am I trying to trivialize someone else’s loss. The purpose of this entry is to reflect upon the emotions of grief and how they affect me and my family. 

A dear friend of mine lost her 3 beautiful triplets at 21 weeks pregnant. 2 little girls and 1 little boy. It is normal and appropriate for me to be sad, heartbroken, and wanting to be there and help out the grieving family.  They are sweet friends of mine and I loved being with my friend during her first few weeks of pregnancy to talk her though the "morning" sickness and rejoice in her excitement. Daydreaming about nursery colors, furniture, and baby cuddles is what us new young moms love doing. I gave her some of my maternity clothes and joked with her about just going ahead and rocking a Mumu because those 3 little ones are going to make her belly grow, FAST. Rightfully, I should be sad for my friend and wishing things were different for her; praying for their family and being supportive and providing comfort when I can.

Inappropriate behavior is sobbing off and on for a week, crying and lying awake until the wee hours of the morning, and wondering if I was going to make it through my work day without getting emotional. I cried through all of my showers and my entire drive home, everyday since she was admitted to the hospital. It’s the only times I have when I am alone. I am even crying now just talking about crying.

This doesn’t come off to me as normal sadness for a friend’s loss. Even Case commented about it, when he comments, I know it is bad. Then one night, it all came out. To me, Case had seemed distant for a few days, so I confronted him about it. I asked him, “What the heck is wrong with you.” He fired back, “What is wrong with you?” I responded, “Obviously I am upset and want to talk about it”. He said, “I have noticed, tell me about it.” I started, “Well its just that this is so unfair to my friend. I can’t believe they have to go through this, I am so sad for her they are the best and don’t deserve this pain suffering and anger, UGH! WHY!  I can’t imagine Case, I can’t imagine….what if this were us….what if this were Charlotte. I don’t want them to be angry like me. They are too good to be angry like me.” 

Communication pretty much stopped there because I wasn’t able to finish between all the hitching I was doing.

What the heck? Was I angry, and why? What did any of this have to do with Charlotte? These were my own words and even I was confused.

In that moment it literally hit me like a brick wall and I just sat there sobbing in front of my husband. I got it. For months I had been grieving for my own loss and I didn’t even know it. I think I probably “knew” it but I wouldn’t allow myself to know it. Following this epiphany, I did some research and found a name for what I was doing, it is called “disenfranchised grieving” and it is real common among parents of special needs kids. Apparently here is the deal in a super short summary (it is actually REALLY complicated)and I am a pretty good example. LOL. Just read on....

 Parents with special needs children often grieve the loss of the “typical” child that we had daydreamed about all during our pregnancy. After all, who plans for a child with special needs? It’s not part of the plan and our dreams, hopes, and plan literally dies. The grief makes sense when you think about it, often parents who are hopeful for a certain gender child go through something similar; but here is where it gets complicated and different. If parents with children of special needs actually admit to grieving (rarely happens and this is why) they are often met with statements like, “It could be worse”, or “at least you can still hold your children and that is more than some parents can say”. This is why special needs parents rarely admit to grief, because you are right, it could be worse and at least we can still hug and hold our kids at night. But you have not cured our grief, as a matter of fact, you just complicated it. Now, I feel guilty on top of my grief. How horrible of a mother am I to not only grieve the loss of my “typical” child but to also be unappreciative of the gift I have. I am a horrible mom and worse, a horrible Christian for not appreciating God’s gift. Yes, I get that things could be worse, but it doesn’t make me feel any better either.  

 I remember being in denial and thinking that everything was over with when we left Le Bonheur Children’s Hospital. Seizures are a thing of the past.  We have a diagnosis and meds, its over. We can go on to being “normal”. 

I remember feeling isolated and seeking out parents in similar situations. 

I remember feelings of anger at my friends with “typical” children. In my mind, they had no clue what living with this Epilepsy and SUDEP fear was like and the day in and day out struggle and discipline needed to keep a child seizure free. It IS really hard. I can't miss C's meds by even an half hour or she will have smaller seizures.“THEY” should appreciate their children more (hypocritical right?). I remember being very angry, a lot. 

I remember feelings of sad and helplessness as I held my daughter through her seizures, and I cried. There wasn’t anything I could do. I could yammer on this soapbox for hours……..I have digressed.

Growing up with my Aunt Dale with Downs Syndrome, I thought I knew what it was like to be a parent to a child with special needs from my grandmother’s experience. Key word here, “thought”. Wow, you have no clue until you are there in the thick of it. I never saw grief in my grandparents but I am sure it was there, maybe I just actually hope it was there. I sure wish Daddy Nub were alive, he would tell me like it was. Momma June is a good resource, but she often paints too rosy of a picture.

All of this is hindsight, I had no clue that these were my emotions and they are characteristic of grief. I had no clue until now. It is appropriate for me to be sad and grieving for my friend, it isn’t appropriate for me to find myself in a full on depression crying for days. At least now I know, and knowing is half the battle.

Being introverted, I have deep dialogs with myself, in my head. What you read here is only a crumb of what is pooling around in my head. It took me a few days of talking in my head to figure this all out, and I then followed it up with research. Could I somehow actually be grieving for a child who is still living? Yes, and it isn't uncommon. From the research I found, it looks like I may be struggling with this for the rest of Charlotte’s life. Here is where it gets sad for special needs parents. When most people grieve, they tend to cope better with it as time passes. It may still hurt and be sad, but 20 years later isn’t going to be exactly like day 1. For special needs parents, 20 years later can be exactly like day 1. Changes in their children’s condition or life changes presenting new challenges to face with their condition are all vehicles that open their grief back up. For me personally, every seizure pulls my old scab back off and makes it bleed again. I HATE telling C “no” every time she points at a swimming pool and says, “puul puul”. It feels like lots of little paper cuts on my heart. 

Even from other parents of children with special needs I hear things like, “it will get better, just have to live day to day”.  I get that too, but you have been living a steady state with your child’s diagnosis. I have been told to wait with baited breath until my child is 2 and HOPEFULLY she will be normal. Wishing my daughter’s infancy and toddler years away is not what I was hoping for, nor can I start to try to come to some kind of resolution to cope with C’s condition because I am waiting until her 3rd birthday before I know if she is going to be “typical” or not.  

Then guilt. Did I mention guilt was involved? If I didn’t let me say it again, guilt. Lots of guilt. There is the guilt that we feel this way when others have a worse condition. It feels awful. 

It is a relief to be able to label my feelings, but it doesn’t make them easily go away. Tomorrow, I am going to go show my love and support to my dear friend as she lays her sweet triplets to rest. Tomorrow morning I will get up, feed my daughter breakfast, medicate her, play with her, watch cartoons with her, shower and get ready to go to the service. Charlotte will be spending a few hours with her papaw while Case and I attend the service.  I will feel sad, very sad and extremely guilty. Here I am complaining about my grief of my living daughter when my dear friend as to lay her babies to rest. To make matters worse, my daughter has been doing well. A few seizures, but no developmental delays.  If you never looked at her genetic sequence, or saw her have a seizure, you would say she was a normal healthy child (this compounds my guilt). I have no reasons to grieve, but I can’t help the way I feel either. While I still feel very sad, my friends who have experienced great loss have been an amazing inspiration to me. 

 My dear friends have been such an inspiration with the way that they have been dealing with the grief of their children’s passing. Their amazing faith has been an inspiration. They have helped me to lean more on “God’s plan” and less on “Gena’s plan”. It is still hard, but realizing and beginning to come to terms and accept my feelings is a good start. Both myself, and my friends have a very long road to hoe, but we are never alone and God is always by our side.

Friday, August 23, 2013

Seizure #7



Charlotte had seizure #7 on Aug. 19th

Anna (age 12) and Andie (age 5) were at my house playing with Charlotte when it happened and alerted Memaw (my mother, Sherry). I am so thankful for the little guardian angels watching over my Charlotte. I remember myself around that age, and some of my friends; none of us would have been nurturing enough to even humor the idea of spending time with a 1 year old baby! I can’t say enough nice things about the little girls that come over to play with Charlotte. They are so sweet, always giving way to Charlotte; playtime is ALWAYS about her, not them. They are so good for her and to her!  This duo helped get C from toddling around on her walker, to walking on her own in a matter of hours. They have taught her the difference between colors and C can point out her primary colors if asked. C went from not really knowing what to do at play time, to making up some of her own games with me, once the girls have gone home. They delight in teaching her new things and words. Anna knows as well as I do when Charlotte is hungry, tired, or wants something. Anna can understand more of Charlotte’s vocabulary than I can and even helps to clue me in on what C is trying to say to me. Anna has a natural tendency toward nurturing and patience. She will make an excellent mother herself one day, or nurse or teacher. She “gets” kids, far different than me at the same age. Heck I still have a hard time “getting” kids. I am too analytical sometimes, it’s the Chemist in me. hahahhahaha While my mom and grandmother are great at watching C while I am away at work, they just can’t play with her like the kids can. About the time C began going mobile, I started praying that “something” would happen to help C build on her mobility and learn new things. I wanted something to foster her natural curiosity and intelligence.  I wasn’t sure exactly how I wanted that to happen; just that C would be in an environment to foster her quick cognitive development. These little girls are the answer to some of my prayers. Memaw and Momma June are always here with the kids, but C just doesn’t learn from Momma June and Memaw like she does Anna and Andie.

Anna is 12 and will be approaching her teenage years here soon. I know it is a matter of time before the fun of teaching someone else new things is going to wear off, and the lure of “teenage” things are going to become more enticing. I was 13 once too.  I have strategically been popping Anna a $5 bill as often as I can to keep her interest. 

I have digressed on my story…..so Anna and Andie were playing with Charlotte and they were behind my couch were Memaw couldn’t see them. I didn’t see this seizure, so I am going on what I was told. From what I know, Charlotte was walking behind the couch, using her walker when she went down. It was hard for Anna, or my mom, to tell if the seizure was caused by the fall, or the fall by the seizure. Charlotte goes down and Anna immediately recognizes that she is having a seizure and tells Memaw. Memaw might be getting a little older and slow, but when her grand-baby is hurt she jumps into action. From what I know, this seizure progressed similar to the last one. By the time Memaw had been informed of the seizure, got up, picked up C, took her to her room , laid her on her changing pad, prepped the emergency meds; Charlotte had come out of her seizure. Total 1 min tops. Momma said, “it was really odd, she came out of it laughing”. Memaw also reported that during this one, C seemed like she was trying to focus on her and maintain concentration. During most of her other seizures her eyes are open, but it is pretty obvious no one is home. Memaw said that C was doing her best to follow Memaws movement and remain conscious through her jerks. No emergency meds were given and after about 10 mins of some wobbly weak legs, she was back to playing with her friends like nothing ever happened. 

The little girls stayed at my house several more hours playing with Charlotte. I am so thankful that those little girls can see C for the fun little girl that she is, and not her seizures. They were not scared or freaked out, they patiently waited for C to regain her composure and just went right back to playing. It makes this little worried Momma's heart smile.

The next day I put in a call to Dr. Fulton to let him know that C had another seizure. We had got back her blood work from her last seizure and found that her Keppra levels were only at 31. Not really that high when compared to the dose she is taking. After the last seizure, Dr. Fulton told me that we had a long way to go before she reached her theoretical limit on Keppra.  Even though C is taking 50% more than an adult dose of Keppra, she is an infant, and infants are notoriously bad about absorbing med (or really anything for that matter). Keppra dosage  increases linearly so if she is at 30 now, and she will top out at 50, we have some play with her dosage. Before even informing the Dr, and knowing this information, I went ahead and increased C’s Keppra dosage. Being a Chemist, I do linear calculations and regressions ALL DAY, so I knew what I was doing and had my Dr’s consent before I just randomly went and started giving my baby a higher dose.  I still haven’t spoken with Dr. Fulton directly since this last seizure (I keep missing his call), but per our last conversation, the plan was to keep increasing her meds until she reached the blood saturation limit of Keppra.  Preemptively, I asked him what happens once we have reached her limit on Keppra. He told he that once we have reached that point, and she is still having seizures, we are going to try another medication. The next med is not approved for use in the US so we have to order it from the UK through the Charlie Foundation. It is the ONLY MEDICATION to be double blind tested to work for infants and kids with SCN1A seizure disorders. So, being a planner, we have a plan and I am happy. Doesn't sound very easy, but that is fine, I will wade though some rough current for my baby girl!

I truly believe that while C’s seizures haven’t decreased in frequency, they have decreased in severity because of her new diet. Since starting C on her MAD (Modified Atkins Diet) diet, she has been able to come out of her seizures on her own. To an Epilepsy mom, this is BIG NEWS! Our Dr.’s are less impressed because they want C totally seizure free, and we do too, but for Mom and Dad, this is an improvement! Until now, Case and I have been worried sick that C would have a seizure at night (proven by seizure #5), and would seize all night long and lead to SUDEP (Sudden Unexpected Death in Epilepsy). C is at high risk for this and has led us to all kinds of weird measures that most parents to 1 year olds aren’t employing. Ask me about my 3 fail safes. LOL. Lord help. :) Neither Case nor myself have slept well in MONTHS because of C’s status (lasting more than 20 min) seizures. All of those seizures ended in medical intervention. Every hard breath over the baby monitor and one of us wakes to go check her. One of us has been up every hour of the night, for nearly a year. Knowing that we have had 2 seizures that stopped without medical intervention, he and I sleep so much better. Of course we don’t want our daughter to have seizures, but being able to come out of a seizure on her own is such a big improvement from the previous months. We are just happy that she is now managing and we take it one day at a time. 

C has taken well to her diet and loves her meat, veggies, cheese and occasional fruits. Mom has benefited as well and lost 5lbs in the past month. I don’t want to subject my baby to something I wouldn’t do myself, so MAD diet, here I come. :)  C and I often share plates so I have to be good for her! C has 3 of her 4 molars coming in right now. So far, she is happy and healthy. Lots of play time and learning time. :) We delayed her MMR vaccine because her 1 year appt. was only a week from her previous seizure. She is growing fast and while she may not ever "out grow" this, she will at least be able to communicate with us when she doesn't feel well. Thank you Lord for the strength you have given Case and I and guiding C's diagnosis. I know we wouldn't be where we are today without you. Thank you to my special guardian angles, Anna and Andie! :) 

Wednesday, July 31, 2013

Purple Bear



For any friends and family keeping up with Charlotte, you probably noticed I have went through a few name changes on my blog here lately. I think I have finally settled on the perfect name, “Purple Bear”.
I never intended on keeping the blog up past Charlotte’s birth. I had no need to. The purpose of the blog was to keep mine and Case’s distant family in the loop with my pregnancy and Charlotte’s birth. Our blog was never intended to document our diagnosis or medical adventures. Those things happen to other people, not us. 

Charlotte’s 1st seizure was on Dec. 29th. I was home alone with her when it happened. I was an ignorant 1st time mom, and I didn’t want to be that mom that freaked out every time my kid ate dirt. Since Charlotte began acting normal after about 2 minutes of being very VERY stiff and still, I wrote it off. I did take some photos of her face and sent them to Case, “hey does this look funny to you, she is acting weird”.  She was 5months old. 

Charlotte had some big milestone come right after that 1st unknown seizure. She got 2 teeth, she began pushing her chest up 90 degres from the ground and attempting to combat crawl. We had our 6mo doctor’s visit coming up, this was big stuff to report to our doctor. I was so excited to tell him how amazing my daughter was, I totally forgot to mention “that time she acted funny”. We had no clue Charlotte had any types of Epilepsy. We had no clue she had a genetic mutation and we knew NOTHING about pediatric hospital stays or what an Epileptologist was. We had no clue our child was going to have some special needs. 

Feb 2013 was Case’s  1st Valentine ’s Day to attempt a prize for his little girl. Charlotte was still to little to really understand, but I was super excited. I couldn’t wait to see what love, care, and thought he would put into a loving prize for our baby girl. Charlotte LOVES balloons, so I just KNEW Case was going to come home with a big bunch of balloons for Charlotte to oogle over. I had “my” heart so set on balloons for Charlotte, that when Case came home carrying a bear, I was a little disappointed. When he walked in the door holding the bear for Charlotte and roses for me, I kept looking around. Surly he bought some balloons, Case KNOWS she loves balloons and besides Charlotte isn’t old enough to form attachments to objects. No balloons. Despite no balloons, I was thrilled that he thought of us. The bear was cute. It was purple holding a pillow heart that said “Love”. Charlotte liked the bear, but as I mentioned earlier, she was still too young to really form any attachments to objects. As quickly as she examined the bear, she threw it down. She was more interested in running  around in her walker. 

2 weeks later Charlotte would have her 1st generalized seizure that she wouldn’t come out of on her own. She seized for about 25 minutes. She was given multiple doses of Valium and Ativan before it stopped. From this point on we kept our over night bags packed. The seizures were so frequent, we kept luggage with the overnight essentials to grab and go, when the next event happened. We lived in a state of heightened alertness just waiting on the next seizure. Is it now,….what about now…..or maybe….. NOW…..ok well maybe in the next 5 minutes…….or it could be RIGHT NOW and we don’t know it. We didn’t know what to do and felt helpless. After the 1st hospital stay with a baby, we became pros at packing a diaper, food (you can’t rely on the hospital to bring you milk or food in a reasonable time when the baby is crying), and toys. Charlotte didn’t have a ton of stuffed animals, so her Purple Valentine’s day bear always made the cut into the bag. Stuffed animals pack easy. ANYTHING to help pass the long days and nights confined to a hospital room. That purple bear has followed us across multiple states, and has been hugged through multiple blood draws and needle sticks. Charlotte has cried into purple bear, hugged purple bear and chewed on his nose so much that it is torn to shreds. Much later we would realize that purple is the awareness color for Epilepsy. Case and I often feel helpless to Charlotte’s seizures. We are both problem solvers, and not having the ability to help or cure Charlotte is really hard on the both of us. We want to actively “DO” something but we can’t. We can’t stop the seizures and when they happen, we just have to hold her, comfort her, and love her. Love is the only thing we can do for Charlotte. The purple bear’s arms are bound to a pillow with the word “love” stitched on it. Our love is often the only thing we can give her, and what binds us together and comforts us when we have nothing else. Our love for one another helps us to keep from allowing Epilepsy to rip us apart. Without love holding us all together, we have nothing.  1 Corinthians. 

When I was debating on the name change of the blog, I wanted something that reflected the crazy journey that we have been on this past year. Nothing was really striking me as significant. I then remembered Charlotte’s favorite bear that she sleeps with every night, Purple Bear. Little did we know that Valentines day before, the seizures really gained some speed, that Charlotte would form such a strong attachment to this bear. Little did we know all of the amazing little significant symbols this bear would come to mean to us. I find it interesting  that out of all of the stuffed animals (you get quite the collection going once you have been to the Ped. Hospital a few times! Hahah)that  Charlotte has, she chose to form her attachment to purple bear. All of her other animals are about the same size, and most of them more cuddly; but she chose that one. She cuddles it at night before drifting off to sleep, and HAS to carry purple bear by his ears every morning to the breakfast table. She loves her purple bear.

That purple bear holds so many meanings to Charlotte and for our family, I thought it would make the best title for our journey though Charlotte’s diagnosis. 

Hoped you enjoyed my rambling thoughts. :)

Tuesday, July 30, 2013

Seizure #6



I believe my last blog post was all about how much “FUN” Charlotte’s birthday was…..time to catch you guys up.

Charlotte was a PILL on Sunday July 21st. We are still trying to learn how her seizure affect her, but I *think* that about 15 hours following her Valium dose, she gets something like a hangover. Since we didn’t give her a dose of Valium until about 5pm on Saturday, she was so difficult about 10am the next day. Clingy to the point that I couldn’t change my own clothing, if I sat her down, she cried. I couldn’t distract her with anything, I couldn’t comfort her with my words, she HAD to be touching me; ALL DAY LONG. This is out of character for her on a normal day. Case couldn’t pacifier her and hold her, it HAD TO BE ME. Usually, Charlotte actually prefers Case. My mommy side LOVES being the one she wants to hold her; but at some point I have to change out of my PJ’s or use the bathroom. A shower would have been nice. I knew we had a long drive to Memphis the next day, so I was very worried how much of a pill Charlotte was going to act.

Saturday (Birthday) seizures, Valium at 5pm. Sunday, MAD BABY. Monday Charlotte wakes up, HAPPY BABY talking away at her purple bear in her crib. We load up and had an uneventful car ride to and from Memphis (in 1 day. That is a pretty big deal with a little guy).

On the Monday following her birthday, July 22nd, we were due for another follow-up with Dr. Fulton at Le Bonheur. I can’t say enough amazing things about Dr. Fulton and his staff! He worked with us and allowed us to show up to his office on a day and time that he normally doesn’t see patients’. Try that with any other doctor. Even more amazing, Dr. Fulton did just ask us how Charlotte was doing and walk out of the room, spending only 30 seconds at best with you and your baby. NO. Dr. Fulton spent the next 4 HOURS with Charlotte. Let me say that again, 4 HOURS. He talked with us about Charlotte’s development. He wanted to know all the new words she had learned. He wanted to see her mad walking skills and let her walk around the room. He checked her reflexes and talked to Case and I about our genetic study. He also gave us a plan on what to expect next, if our current plan of action doesn’t seem to be working. We talked about Charlotte’s diet, and her failed Birthday party. The entire time he is just monitoring her. I noticed about 2 hours into our visit that Charlotte was having some myoclonic jerks in Dr. Fulton’s office. Having your kid actually exhibit symptoms while they are at the doctor’s office is like winning $200 off of a lottery scratch off card. It isn’t unheard of, but rarely happens. I saw one and said, “Oh my goodness, did you see that Dr. Fulton?”, he said “yes, I have seen a few so far”. Case and Greg couldn’t even see them or tell they were happening; that is how in tune Dr. Fulton is with Charlotte. Utterly amazing! Once Charlotte settled down some and her meds kicked in, she didn’t have any more myoclonic jerks that day. The rest of the time in the doctor's office we spent getting mine and Case’s blood work done for our genetic study. We are still hoping (although not super likely) that one of us has the same genetic mutation that Charlotte has. We won’t get the results back for nearly 2 months. We also discussed Charlotte’s diet and we now have a nutritionist who monitors Charlotte. Charlotte is on a “Glycemic Index/Modified Atkins” diet for seizures. All of Charlotte’s food has to be measured (for serving sizes) and the carbs calculated. Meat, cheese, butter, heavy cream, and eggs are free game. Most fruits and veggies have to be given with caveats. Watermelon, bananas, pineapple, fruit juices, bread, rice, pasta, cereal, and Milk (the toddler staples) are all cut from her diet. Right now, this diet is easy to follow. Charlotte LOVES ham and cheese, and she isn’t old enough to have peer pressure and outside influences. Now is a great time to try “diet therapy” to see if it works, while we can strictly control what she eats. I now have a food diary for Charlotte and I add up her carb intake every day.  The Modified Atkins diet is WAY easier to follow than the kids who are on straight Ketogenic diets. The Ketogenic  diets for seizures are SO strict that you even have to monitor what kinds of soap, lotions, cosmetics, ect that you use since your skin can absorb carbohydrates. I hope we never have to get that strict with Charlotte!  Up to this point, it has been over 2mo since Charlotte’s last generalized seizure and all I had done was cut out her bread, pasta and rice! I was so hopeful that this diet would be our ticket to a seizure free life!
Dr. Fulton increased Charlotte’s meds, and we scheduled a follow up appointment.

 We are on track to be seizure free for 3 whole months if we can just make it to Aug. 9th! This would be the longest time EVER she has went without a generalized seizure since she was 5 months old.

All was well until Tuesday July 30th. I was out with lunch with Case. His phone rings, he looks at the number and then answers. He is very serious and concerned. He doesn’t say ANYTHING at all for about 2 minutes. My anxiety starts to creep up, but I try to write it off as “work stuff” since the call was on his work phone. Just to be sure all was well, I grab my phone to make sure no one was trying to get a hold of me. I had no missed calls. Case is still really quite for a phone call. I forget what he said when he finally started talking to the person on the other end of the line, but from the few words I caught, something had happened to Charlotte. My heart sank, I was so hopeful it was his work calling him. Knowing the nature of her seizures, I knew that by the time someone was in a position to call either me or Case, the situation was either under control, or she was already loaded up in an ambulance. My intuition was right. Charlotte had another seizure.

Case was completely heartbroken. You could literally see the life come out of his face and you could watch his heart sink before your eyes. He hung up the phone and I was expecting to dash to the Pediatric ER, but that wasn’t the case. Charlotte had a seizure, but it only lasted 30 seconds at the most, and the seizure quit on its own. I could tell that it was all Case could do to hold his emotional composure during lunch. He was taking this really hard. He wanted to go home and check on her. I couldn’t, I have no PTO from work anymore. Case has plenty of sick leave and he volunteered to go home and check on Charlotte. My mom did a great job handling the situation. Charlotte was outside pushing her little walker when she fell over and started having a seizure. My mom was right there when it happened and scooped her up an wisked her into her nursery and placed her on her changing pad. She grabbed her emergency meds and by the time she turned back around, Charlotte was out of her seizure and looking at her Memaw. Sherry wasn’t exactly sure what to do, so she gave Charlotte the emergency Valium anyways. If Charlotte gets her emergency Valium and doesn’t need it, it doesn’t hurt her, only makes her loopy. While she was loopy following the Valium, she had fun the rest of the day playing with the neighbor kids and walking around the house. 

It sounds bad, and the seizures are horrible, but it could be worse. I tried to remember what the Doctors were telling us, that should her seizures get worse (more frequent, she doesn’t come out of them on her own, she doesn’t respond to emergency meds, or they begin to interfere with her learning) then we are going to have some serious problems. While Charlotte had a seizure today, it lasted only 30 seconds. Her previous seizures all lasted 30 minutes plus! Charlotte was able to come out of todays seizure on her own, in the past she had to have multiple shots of Valium AND Ativan to stop her seizures. We were only 10 days shy of being seizure free for 3mo. When she had her last seizure, they were coming every 2 weeks (and at $250 per ER visit, + ambulance rides they were also becoming very expensive). Despite todays event, I honestly feel that we are starting to find our right path for getting Charlotte as seizure free as possible. I think that the low carb diet is working. She only had enough “sugar stores” to fuel this seizure for only 30 seconds. Your brain uses sugar as its fuel. If you have no sugar, your brain doesn’t have any easily accessible fuels to use. Your body will then begin to burn fat as a fuel source, but fat is much harder to access than quick easy carbohydrates. Without quick easily accessible sugar to burn, your brain then becomes too lazy to try to pull from your fat to feed the seizure. Seizure stops.They require a lot of energy and Charlotte ate like a pig following this seizure.

Once the seizure was stopped, Charlotte insisted on seeing “Day day” (Dale), then resumed her happy normal (but loopy) self. 

I called Dr. Fulton’s office and told them about the seizure. Her Keppra level is increased to 15mL per day (a normal adult dose maxes out at 10mL a day) and we are having blood work taken in a week to check her levels. Infants are notoriously bad at absorbing liquid medications, so Dr. Fulton suspects that we could throw as much of this stuff at her that we want, but she would still only absorb a certain amount. If Keppra isn’t going to work to control her seizures, we are going to have to try another medication. I am not excited about trying a different medication. Nearly every other anti-seizure med has some pretty rough side effects that I am not looking forward to. Prayers all goes well. 

Our Tally 
1.       Dec. 29th (5mo old)
2.       Feb. 24th (7mo old –Said “Mama” in the hospital for the 1st time during a blood draw)
3.       March 24th (8mo old – stood up for the 1st time in her hospital crib)
4.       April 23rd (9mo old)
5.       May 9th (9mo old)
6.       July 30th (1 year old)